718 results on '"patient‐centred"'
Search Results
2. Couple dynamics and interaction needs with healthcare professionals in long-term neurological rehabilitation: A hermeneutic qualitative study
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von Bosse, Alexa, König, Peter, and Jansen, Eva
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- 2025
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3. Quality of Decision Making in Radiation Oncology
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Vinod, S.K., Merie, R., and Harden, S.
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- 2024
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4. Inter-personal versus content: assessment of communication skills in Iraqi physicians
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Al-Hemiary, Nesif J., Cucchi, Angie, Al-Nuaimi, Ahmed Sameer, Al-Saffar, Hilal, and Al-Ani, Kifah
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- 2020
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5. Reflections on the ERN ITHACA 2024 Patient Workshop in Bucharest
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Zdolšek Draksler, Tanja, Hugon, Anne, and Dan, Dorica
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- 2025
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6. Patient-Centred Counselling Tools for Dispensing Contraceptives in Community Pharmacy Settings: A Systematic Review
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Vijai Indrian P, Chong WW, Ali A, and Mhd Ali A
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contraception ,patient-centred ,community pharmacist ,family planning ,counseling tools ,dispensing contraceptives ,Gynecology and obstetrics ,RG1-991 - Abstract
Parimala Vijai Indrian,1 Wei Wen Chong,1 Anizah Ali,2 Adliah Mhd Ali1 1Centre of Quality Management of Medicines, Faculty of Pharmacy, Universiti Kebangsaan Malaysia, Kuala Lumpur, Malaysia; 2Department of Obstetrics and Gynaecology, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur, MalaysiaCorrespondence: Adliah Mhd Ali, Faculty of Pharmacy, Universiti Kebangsaan Malaysia, Jalan Raja Muda Abdul Aziz, Kuala Lumpur, 50300, Malaysia, Tel +603-92897286, Fax +603-26983271, Email adliah@ukm.edu.myBackground: The patient-centred counselling tools are a comprehensive resource to assist community pharmacists in providing effective treatment choices and assisting with decision-making.Aim: To identify and select suitable tools community pharmacists use with targeted patient-centred outcomes for dispensing contraceptives.Methods: Five electronic databases, Web of Science, Cochrane Library, PubMed, Scopus, and Google Scholar as additional sources for published and unpublished studies, were searched to identify literature for contraceptive tools or strategies for pharmacists to decide on contraceptive choice and dispensing by pharmacist. Studies involving pharmacists or tools suitable for pharmacists from any country, published since 1990 were considered.Results: A total of 21 publications met the inclusion criteria. Robvis’ tool was used for visualizing the risk of bias for each result. There were three studies that used the tools specifically by community pharmacists and others focused on general family planning users and pharmacists. The suitability of patient-centred interventions in community pharmacy settings was further evaluated.Conclusion: The evidence for special tools for pharmacists for dispensing contraceptives in community settings is limited and further research is needed to develop and evaluate novel interventions for pharmacists in community settings.Keywords: contraception, patient-centred, community pharmacist, family planning, counselling tools, dispensing contraceptives
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- 2024
7. Perspectives of current and future use of electrical stimulation home-devices from people with spinal cord injuries and healthcare professionals.
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Bochkezanian, V., Bowditch, L., and Quel de Oliveira, C.
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ELECTRIC stimulation , *MEDICAL personnel , *SPINAL cord injuries , *ASSISTIVE technology , *MUSCLE strength - Abstract
AbstractIntroductionMethodsResultsConclusions\nImplications for rehabilitationElectrical stimulation (E-stim) can reduce the impact of complications, like spasticity, bladder dysfunction in people with spinal cord injuries (SCIs), enhancing quality of life and health outcomes. With SCI prevalence high in regional Australia and a shift towards home-based community integrated care, the perspectives of people with SCI and healthcare professionals on current and future use of E-stim home-devices are needed.A mixed-methods concurrent triangulation approach was used. A cross-sectional survey collected demographics and perspectives on E-stim technology from 84 individuals with SCI and healthcare professionals. Focus groups with 36 participants explored the experiences, facilitators, and barriers of using E-stim home-devices.Healthcare professionals prioritised the use of E-stim for muscle strength and functional improvements, whereas people with SCI prioritised alleviating secondary complications. Healthcare professionals emphasised personal responsibility; however, people with SCI saw the clinical relationship as an important facilitator. Both groups agreed on the cost, accessibility, and funding as major barriers.Different expectations between healthcare professionals and people with SCI highlight the need for improved communication when establishing goals and expected outcomes. Successful E-stim home-device implementation relies on device availability and tailoring education to suit people with SCI and healthcare professionals.Having an easy access to an electrical stimulation (E-stim) home-device can be a useful tool to improve muscle strength and reduce secondary complications, such as spasticity, bladder, and bowel dysfunction in people with spinal cord injury (SCI).Communication between healthcare professionals and people with SCI with clear goals and expected outcomes should be improved for successful implementation of E-stim home-devices.Tailoring education for healthcare professionals, people with SCI and people involved in decision-making for implementation of E-stim home-devices is essential to meet the needs and priorities of people with SCI.Having an easy access to an electrical stimulation (E-stim) home-device can be a useful tool to improve muscle strength and reduce secondary complications, such as spasticity, bladder, and bowel dysfunction in people with spinal cord injury (SCI).Communication between healthcare professionals and people with SCI with clear goals and expected outcomes should be improved for successful implementation of E-stim home-devices.Tailoring education for healthcare professionals, people with SCI and people involved in decision-making for implementation of E-stim home-devices is essential to meet the needs and priorities of people with SCI. [ABSTRACT FROM AUTHOR]
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- 2024
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8. A qualitative study investigating the views of stroke survivors and their family members on discussing post-stroke cognitive trajectories.
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Hobden, Georgina, Tang, Eugene Yee Hing, and Demeyere, Nele
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STROKE patients , *VOLUNTEER recruitment , *MEDICAL personnel , *COGNITION disorders , *THEMATIC analysis - Abstract
Cognitive impairment is common early after stroke but trajectories over the long term are variable. Some stroke survivors make a full recovery, while others retain a stable impairment or decline. This study explored the perceived advantages and disadvantages of discussing potential cognitive trajectories with stroke survivors and their family members. Stroke survivors at least six-months post-stroke were purposively sampled from an existing pool of research volunteers recruited originally for the OCS-Recovery study. They were invited, alongside a family member, to participate in a semi-structured interview. Interviews were audio recorded, transcribed, and analyzed using reflexive thematic analysis. Twenty-six stroke survivors and eleven family members participated. We identified one overarching theme and three related subthemes. The overarching theme was: One size does not fit all. The subthemes were: (1) Hearing about potential cognitive trajectories helps to develop realistic expectations; (2) Discussions about cognitive trajectories may be motivating; (3) Cognitive decline and post-stroke dementia discussions may be anxiety-provoking and depressing. Healthcare professionals should adopt a person-centred approach to sharing information about post-stroke cognitive trajectories. Discussions should be tailored to individual needs and preferences, with dementia-related topics in particular addressed with the utmost selectivity and sensitivity. [ABSTRACT FROM AUTHOR]
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- 2024
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9. Caring touch as communication in intensive care nursing: a qualitative study.
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Sandnes, Lise and Uhrenfeldt, Lisbeth
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NURSE-patient relationships , *INTENSIVE care nursing , *CRITICALLY ill , *PATIENTS , *QUALITATIVE research , *HUMANITY , *TOUCH , *INTERVIEWING , *DIGNITY , *PATIENT-centered care , *COMMUNICATION , *RESEARCH methodology , *TRUST , *PHENOMENOLOGY , *CRITICAL care nurses , *HOPE - Abstract
Purpose: This article describes intensive care nurses' experiences of using communicative caring touch as stroking the patient's cheek or holding his hand. Our research question: "What do intensive care nurses communicate through caring touch?" Methods: In this qualitative hermeneutically based study data from two intensive care units at Norwegian hospitals are analysed. Eight specialist nurses shared experiences through individual, semi-structured interviews. Results: The main theme, Communicating safety and presence has four sub-themes: Amplified presence, Communicating security, trust and care, Creating and confirming relationships and Communicating openness to a deeper conversation. Communicative caring touch is offered from the nurse due to the patient's needs. Caring touch communicates person-centred care, invites to relationship while respecting the patient's dignity as a fellow human being. Caring touch conveys a human initiative in the highly technology environment. Conclusion: Caring touch is the silent way to communicate care, hope, strength and humanity to critical sick patients. This article provides evidence for a common, but poorly described phenomenon in intensive care nursing. [ABSTRACT FROM AUTHOR]
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- 2024
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10. Experiences of facilitators and barriers for fulfilment of human needs when living with restless legs syndrome: a qualitative study.
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Odzakovic, Elzana, Allgurin, Monika, Jonasson, Lise-Lotte, Öberg, Sandra, Fridlund, Bengt, Ulander, Martin, Lind, Jonas, and Broström, Anders
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HIERARCHY of needs theory (Psychology) , *LIFE , *HEALTH self-care , *HEALTH services accessibility , *SAFETY , *MEDICAL care use , *RESEARCH funding , *QUALITATIVE research , *MEDICAL personnel , *CONTENT analysis , *INTERVIEWING , *MEDICAL care , *QUESTIONNAIRES , *HYPERSOMNIA , *PSYCHOLOGICAL adaptation , *DESCRIPTIVE statistics , *ATTITUDE (Psychology) , *PATIENT-centered care , *CHRONIC diseases , *NEED (Psychology) , *RESEARCH methodology , *LOVE , *TRUST , *SLEEP , *COMMUNICATION , *QUALITY of life , *HEALTH behavior , *BASIC needs , *RESTLESS legs syndrome , *NEEDS assessment , *SOCIAL support , *SOCIODEMOGRAPHIC factors , *COMPARATIVE studies , *PATIENTS' attitudes , *PSYCHOSOCIAL factors , *SLEEP disorders , *MENTAL depression , *ACTIVITIES of daily living , *DISEASE complications - Abstract
Purpose: Restless Legs Syndrome (RLS) is a widespread condition that affects sleep leading to daytime sleepiness, depression, and reduced quality of life. This study aims to determine and describe how patients with RLS experience their everyday life, with a focus on facilitators and barriers related to Maslow's hierarchical theory of human needs. Method: Semi-structured interviews were analysed with qualitative content analysis resulting in facilitators and barriers affecting the fulfilment of the five human needs. Results: Addressing RLS symptoms through medications and a quiet sleep environment fulfils psychological needs. Control over RLS symptoms, engagement in activities, trust in treatments, and social support meet safety and security needs. Social inclusion, close relationships, and meaningful interactions fulfil a sense of belongingness and love needs despite RLS. Competence in managing RLS, effective self-care strategies, confident communication, and trust-building support esteem needs. Finally, comprehensive understanding through person-centred interventions and coping fulfils the self-actualization needs in managing RLS. Conclusion: Holistic and person-centred interventions, including facilitators for the fulfilment of physiological, psychological, and social needs could help healthcare professionals to provide holistic care. [ABSTRACT FROM AUTHOR]
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- 2024
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11. A technology-enabled collaborative learning model (Project ECHO) to upskill primary care providers in best practice pain care.
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De Morgan, Simone, Walker, Pippy, Blyth, Fiona M., Daly, Anne, Burke, Anne L. J., and Nicholas, Michael K.
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INTERDISCIPLINARY education , *HEALTH services accessibility , *SATISFACTION , *PROFESSIONAL practice , *INTERPROFESSIONAL relations , *RESEARCH funding , *PRIMARY health care , *EDUCATIONAL technology , *CONFIDENCE , *PHYSICIANS' attitudes , *DESCRIPTIVE statistics , *MENTORING , *CONTINUING medical education , *PROFESSIONS , *INFORMATION needs , *THEMATIC analysis , *PAIN management , *CLINICAL competence , *PROFESSIONAL employee training , *RESEARCH methodology , *ABILITY , *CONCEPTUAL structures , *LEARNING strategies , *QUALITY assurance , *COMPARATIVE studies , *NEEDS assessment , *DATA analysis software , *HEALTH care teams , *TRAINING , *LABOR supply - Abstract
Background: The South Australian (SA) Chronic Pain Extension for Community Healthcare Outcomes (ECHO) Network was established to upskill primary care providers in best practice pain care aligned to a patient-centred, biopsychosocial approach using didactic and case-based virtual mentoring sessions. The aims of this study were to assess: (a) participation, satisfaction (relevance, satisfaction with format and content, perceptions of the mentorship environment), learning (perceived knowledge gain, change in attitudes), competence (self-confidence) and performance (intention to change practice, perceived practice change) of the ECHO Network clinician participants; and (b) self-perceived barriers at the clinical, service and system level to applying the learnings. Methods: A mixed methods, participatory evaluation approach was undertaken. Data sources included analysis of program records (learning needs assessment, enrolment survey data, program participation data and online surveys of healthcare professionals including a satisfaction survey after each ECHO session (n = 106 across the ECHO series of 10 sessions; average response rate = 46%), a case presenters survey (n = 7, response rate = 78%) and an outcome survey after all 10 ECHO sessions (n = 11, response rate = 25%). Results: Forty-four healthcare professionals participated in the ECHO Network from a range of career stages and professional disciplines (half were general practitioners). One-third of participants practised in regional SA. Participants reported that the ECHO sessions met their learning needs (average = 99% across the series), were relevant to practice (average = 99% across the series), enabled them to learn about the multidisciplinary and biopsychosocial approach to pain care (a verage = 97% across the series) and provided positive mentorship (average = 96% across the series). Key learnings for participants were the importance of validating the patient experience and incorporating psychological and social approaches into pain care. More than one-third of participants (average = 42% across the series) identified barriers to applying the learnings such as limited time during a consultation and difficulty in forming a multidisciplinary team. Conclusions: The ECHO Network model was found to be an acceptable and effective interdisciplinary education model for upskilling primary care providers in best practice pain care aligned to a patient-centred, biopsychosocial approach to pain managment. However, participants perceived barriers to translating this knowledge into practice at the clinical, service and system levels. Chronic pain affects one in five people in Australia and has a high economic burden on individuals and the health system. Upskilling primary care providers in best practice pain care is critical. The South Australian (SA) Chronic Pain ECHO Network was established to improve knowledge, confidence, attitudes and practice of primary care providers and provide professional support. The ECHO Network model was found to be an acceptable and effective model for upskilling primary care providers in best practice pain care. [ABSTRACT FROM AUTHOR]
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- 2024
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12. What is the Status Quo of Patient-Centred Physiotherapy Management of People with Headache within a Biopsychosocial Model? – A Narrative Review.
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Mingels, Sarah, Granitzer, Marita, Luedtke, Kerstin, and Dankaerts, Wim
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Purpose of Review: Patient-centred care (PCC) is deemed essential in the rehabilitation of musculoskeletal pain. Integrating such care within a biopsychosocial framework, enables to address all facets of the individual pain experience, and to manage the individual instead of the condition. This narrative review describes the status quo of PCC physiotherapy management of people with headache within a biopsychosocial model. PubMed, EMBASE, Web of Science, Scopus were searched (update 07.05.2024). The search-query comprised terminology relating to "headache", "patient-centred", "biopsychosocial", "physiotherapy". Additional eligibility criteria were reviews, trials, cohort, case report, case–control studies in English, Dutch, French. Recent Findings: Gaps are exposed in patient-centred physiotherapy management of migraine, tension-type headache, and cervicogenic headache. While a biopsychosocial approach is advised to manage migraine and tension-type headache, its use in clinical practice is not reflected by the literature. A biopsychosocial approach is not advised in cervicogenic headache. Psychosocial-lifestyle interventions are mainly delivered by health-care providers other than physiotherapists. Additionally, psychologically-informed practice is barely introduced in physiotherapy headache management. Though, managing the social context within a biopsychosocial framework is advised, the implementation by physiotherapists is unclear. Comparable conclusions apply to PCC. Summary: PCC is recommended for the physiotherapy management of primary and secondary headache. Such recommendation remains however theoretical, not reaching clinical implementation. Yet, a shift from the traditional disease-centred model of care towards PCC is ongoing and should be continued in physiotherapy management. With this implementation, clinical and economical studies are needed to evaluate its effectiveness. [ABSTRACT FROM AUTHOR]
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- 2024
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13. Patient-Centred Counselling Tools for Dispensing Contraceptives in Community Pharmacy Settings: A Systematic Review.
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Indrian, Parimala Vijai, Chong, Wei Wen, Ali, Anizah, and Ali, Adliah Mhd
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FAMILY planning ,DRUGSTORES ,PHARMACISTS ,CONTRACEPTIVES ,CONTRACEPTION - Abstract
Background: The patient-centred counselling tools are a comprehensive resource to assist community pharmacists in providing effective treatment choices and assisting with decision-making. Aim: To identify and select suitable tools community pharmacists use with targeted patient-centred outcomes for dispensing contraceptives. Methods: Five electronic databases, Web of Science, Cochrane Library, PubMed, Scopus, and Google Scholar as additional sources for published and unpublished studies, were searched to identify literature for contraceptive tools or strategies for pharmacists to decide on contraceptive choice and dispensing by pharmacist. Studies involving pharmacists or tools suitable for pharmacists from any country, published since 1990 were considered. Results: A total of 21 publications met the inclusion criteria. Robvis' tool was used for visualizing the risk of bias for each result. There were three studies that used the tools specifically by community pharmacists and others focused on general family planning users and pharmacists. The suitability of patient-centred interventions in community pharmacy settings was further evaluated. Conclusion: The evidence for special tools for pharmacists for dispensing contraceptives in community settings is limited and further research is needed to develop and evaluate novel interventions for pharmacists in community settings. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
- View/download PDF
14. Fragmented care in lupus: Patient experiences and insights
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Armand Bam
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systemic lupus erythematosus ,chronic illness management ,multidisciplinary care ,care fragmentation ,patient-centred ,interprofessional collaboration ,team dynamics ,integrated care. ,Vocational rehabilitation. Employment of people with disabilities ,HD7255-7256 ,Communities. Classes. Races ,HT51-1595 - Abstract
Background: Systemic lupus erythematosus (SLE) is a complex autoimmune disease requiring interprofessional collaborative care because of its varied manifestations. This study explores the experiences of individuals living with SLE regarding the communication and collaboration among their healthcare providers. Objectives: This study aimed to explore the communication dynamics that shape treatment experiences and well-being in SLE care. Method: A qualitative multiple case study design was used, with thematic analysis of semi-structured interviews from six people living with SLE. Results: Three primary themes emerged: the necessity of cohesive healthcare teams, the centrality of client-centred care and the significant challenges posed by fragmented healthcare systems. Conclusion: The study highlights the need for integrated care models to enhance communication and coordination among healthcare providers. Contribution: This research adds empirical insights into the communication dynamics within medical teams managing SLE, advocating for client-centred and systemic improvements in care coordination.
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- 2025
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15. Collaborative goal setting in palliative rehabilitation: a case report
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Charlotte Siew Hwee Heng
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Palliative rehabilitation ,Physiotherapy ,Goal-setting ,Patient-centred ,Case report ,Special situations and conditions ,RC952-1245 - Abstract
Abstract Background Palliative rehabilitation amalgamates the principles of palliative care and rehabilitation to enhance patients’ quality of life by optimizing physical function and maximizing autonomy despite advancing illness. Alongside providing non-pharmacological symptom management, it emphasizes personalized goal-setting tailored to individual needs. This case illustrates the transformative impact targeted physiotherapy interventions can have on patients’ physical function, morale and motivation in spite of their expected deterioration. Case presentation An 85-year-old male with angioimmunoblastic T cell lymphoma was admitted to home hospice care. He was referred for physiotherapy to optimize his function and mobility despite his short prognosis. A conversation guide was used throughout the duration of therapy to identify personal goals, prescribe and review the use of appropriate interventions, and discuss future therapeutic plans. Within a month he achieved his functional goals, experienced reduced physical dependency, and had increased satisfaction in his ability to participate more actively in self-care. This also resulted in significant improvements in his confidence, mood, and overall well-being. Engaging the patient actively in his care and management journey provided him with significant motivation and hope. Conclusion The case study highlights the vital role of physiotherapists in facilitating transparent communication among patients, healthcare providers, and caregivers throughout palliative rehabilitation. Through open dialogue and utilizing conversation guides, physiotherapists help understand patient preferences, goals, and motivation. This patient-centred approach ensures that therapeutic interventions align with individual needs, enhancing overall patient care and the provision of holistic palliative care.
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- 2024
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16. Cellulitis in the Emergency Department: A prospective cohort study with patient‐centred follow‐up.
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Nightingale, Rachael S, Etheridge, Nimai, Sweeny, Amy L, Smyth, Graham, Dace, William, Pellatt, Richard A.F., Snelling, Peter J, Yadav, Krishan, and Keijzers, Gerben
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ANTIBIOTICS , *CELLULITIS treatment , *CELLULITIS , *SOFT tissue infections , *ERYTHEMA , *RESEARCH funding , *EDEMA , *SCIENTIFIC observation , *QUESTIONNAIRES , *HOSPITAL emergency services , *TREATMENT effectiveness , *DESCRIPTIVE statistics , *LONGITUDINAL method , *ORBITAL diseases , *PAIN , *ELECTRONIC health records , *HEALTH outcome assessment , *TREATMENT failure , *COMPARATIVE studies - Abstract
Objective: There is substantial practice variation in the management of cellulitis with limited prospective studies describing the course of cellulitis after diagnosis. We aimed to describe the demographics, clinical features (erythema, warmth, swelling and pain), patient‐reported disease trajectory and medium‐term follow‐up for ED patients with cellulitis. Methods: Prospective observational cohort study of adults diagnosed with cellulitis in two EDs in Southeast Queensland, Australia. Patients with (peri)orbital cellulitis and abscess were excluded. Data were obtained from a baseline questionnaire, electronic medical records and follow‐up questionnaires at 3, 7 and 14 days. Clinician adjudication of day 14 cellulitis cure was compared to patient assessment. Descriptive analyses were conducted. Results: Three‐hundred patients (mean age 50 years, SD 19.9) with cellulitis were enrolled, predominantly affecting the lower limb (75%). Cellulitis features showed greatest improvement between enrolment and day 3. Clinical improvement continued gradually at days 7 and 14 with persistent skin erythema (41%) and swelling (37%) at day 14. Skin warmth was the feature most likely to be resolved at each time point. There was a discrepancy in clinician and patient assessment of cellulitis cure at day 14 (85.8% vs. 52.8% cured). Conclusions: A clinical response of cellulitis features can be expected at day 3 with ongoing slower improvement over time. Over one third of patients had erythema or swelling at day 14. Patients are less likely than clinicians to deem their cellulitis cured at day 14. Future research should include parallel patient and clinician evaluation of cellulitis to help develop clearer definitions of treatment failure and cure. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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17. Collaborative goal setting in palliative rehabilitation: a case report.
- Author
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Hwee Heng, Charlotte Siew
- Subjects
PHYSICAL therapy ,T-cell lymphoma ,HEALTH self-care ,PATIENTS' families ,INTERPROFESSIONAL relations ,PALLIATIVE treatment ,CONVERSATION ,MEDICAL personnel ,GOAL (Psychology) ,DECISION making ,FUNCTIONAL status ,CONFIDENCE ,MOTIVATION (Psychology) ,PATIENT-centered care ,MORALE ,QUALITY of life ,PATIENT-professional relations ,AFFECT (Psychology) ,CANCER patient rehabilitation ,HOSPICE care ,WELL-being ,HOPE ,PATIENTS' attitudes - Abstract
Background: Palliative rehabilitation amalgamates the principles of palliative care and rehabilitation to enhance patients' quality of life by optimizing physical function and maximizing autonomy despite advancing illness. Alongside providing non-pharmacological symptom management, it emphasizes personalized goal-setting tailored to individual needs. This case illustrates the transformative impact targeted physiotherapy interventions can have on patients' physical function, morale and motivation in spite of their expected deterioration. Case presentation: An 85-year-old male with angioimmunoblastic T cell lymphoma was admitted to home hospice care. He was referred for physiotherapy to optimize his function and mobility despite his short prognosis. A conversation guide was used throughout the duration of therapy to identify personal goals, prescribe and review the use of appropriate interventions, and discuss future therapeutic plans. Within a month he achieved his functional goals, experienced reduced physical dependency, and had increased satisfaction in his ability to participate more actively in self-care. This also resulted in significant improvements in his confidence, mood, and overall well-being. Engaging the patient actively in his care and management journey provided him with significant motivation and hope. Conclusion: The case study highlights the vital role of physiotherapists in facilitating transparent communication among patients, healthcare providers, and caregivers throughout palliative rehabilitation. Through open dialogue and utilizing conversation guides, physiotherapists help understand patient preferences, goals, and motivation. This patient-centred approach ensures that therapeutic interventions align with individual needs, enhancing overall patient care and the provision of holistic palliative care. [ABSTRACT FROM AUTHOR]
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- 2024
- Full Text
- View/download PDF
18. New horizons in clinical practice guidelines for use with older people.
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Martin, Finbarr C, Quinn, Terence J, Straus, Sharon E, Anand, Sonia, van der Velde, Nathalie, and Harwood, Rowan H
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MEDICAL protocols , *ELDER care , *HEALTH services accessibility , *SOCIOECONOMIC factors , *FRAIL elderly , *DECISION making , *FUNCTIONAL status , *EVALUATION of medical care , *PATIENT-centered care , *COGNITION disorders , *EVIDENCE-based medicine , *STAKEHOLDER analysis , *COMORBIDITY , *PATIENT participation - Abstract
Globally, more people are living into advanced old age, with age-associated frailty, disability and multimorbidity. Achieving equity for all ages necessitates adapting healthcare systems. Clinical practice guidelines (CPGs) have an important place in adapting evidence-based medicine and clinical care to reflect these changing needs. CPGs can facilitate better and more systematic care for older people. But they can also present a challenge to patient-centred care and shared decision-making when clinical and/or socioeconomic heterogeneity or personal priorities are not reflected in recommendations or in their application. Indeed, evidence is often lacking to enable this variability to be reflected in guidance. Evidence is more likely to be lacking about some sections of the population. Many older adults are at the intersection of many factors associated with exclusion from traditional clinical evidence sources with higher incidence of multimorbidity and disability compounded by poorer healthcare access and ultimately worse outcomes. We describe these challenges and illustrate how they can adversely affect CPG scope, the evidence available and its summation, the content of CPG recommendations and their patient-centred implementation. In all of this, we take older adults as our focus, but much of what we say will be applicable to other marginalised groups. Then, using the established process of formulating a CPG as a framework, we consider how these challenges can be mitigated, with particular attention to applicability and implementation. We consider why CPG recommendations on the same clinical areas may be inconsistent and describe approaches to ensuring that CPGs remain up to date. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
- View/download PDF
19. Right Patient Selection
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Curtis, Kerrie, Gavin, Nicole, Duggan, Caitriona, and Moureau, Nancy L., editor
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- 2024
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20. Engaging a community to focus on upper limb function in people with multiple sclerosis: the ThinkHand campaign case study
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Alison Thomson, Rachel Horne, Christine Chapman, Trishna Bharadia, Patrick Burke, Elizabeth Colwell, Mark Harrington, Bonnie Boskovic, Andrea Stennett, David Baker, Gavin Giovannoni, and Klaus Schmierer
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Multiple Sclerosis ,Patient public involvement ,Public engagement ,Design ,Clinical trials ,Patient-centred ,Medicine ,Medicine (General) ,R5-920 - Abstract
Abstract Background: Solving complex research challenges requires innovative thinking and alternative approaches to traditional methods. One such example is the problem of arm and hand, or upper limb function in multiple sclerosis (MS), a neurological condition affecting approximately 2.9 million people worldwide and more than 150,000 in the United Kingdom. Historically, clinical trials and research have focused on mobility and walking ability. This excludes a large number of patients who are wheelchair users, limiting their quality of life and restricting access to possibly helpful medications. To address this issue, the ThinkHand campaign was launched in 2016, aiming to raise awareness about the importance of upper limb function in MS and develop alternative ways to measure, record, and account for hand and arm function changes. Main body: The campaign utilised innovative strategies at scientific conferences and online surveys to engage people affected by MS, healthcare professionals, charities, and researchers in discussing the importance of preserving upper limb function. Through co-design and interdisciplinary collaboration, the campaign developed new tools like the low-cost cardboard version of the Nine-Hole Peg Test, facilitating remote monitoring of hand function. Additionally, the campaign co-created the “Under & Over” rehabilitation tool, allowing individuals with advanced MS to participate in a remote rehabilitation program. The impact of the ThinkHand campaign has been significant, helping to shift the focus of both academic and industry-supported trials, including the O’HAND and ChariotMS trials, both using upper limb function as their primary end point. The campaign’s patient-centred approach highlighted the importance of recognising patients’ perspectives in research and challenged established assumptions and practices. It demonstrated the effectiveness of interdisciplinary collaboration, systems thinking, and co-creation with stakeholders in tackling complex problems. Conclusion: The ThinkHand campaign provides valuable insights for health research practices. By involving patients at all stages, researchers can gain a deeper understanding of the impact of disease on their lives, identify gaps and focus research on their needs. Experimentation and iteration can lead to innovative solutions, and openness to unconventional methods can drive widespread change. The ThinkHand campaign exemplifies the potential of patient-centred approaches to address complex research challenges and revolutionise the field of MS research and management. Embracing such approaches will contribute to more inclusive and impactful research in the future.
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- 2024
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21. Perceptions, preferences, and experiences of tuberculosis education and counselling among patients and providers in Kampala, Uganda: A qualitative study.
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Ayakaka, Irene, Armstrong-Hough, Mari, Hannaford, Alisse, Ggita, Joseph, Turimumahoro, Patricia, Katamba, Achilles, Katahoire, Anne, Shenoi, Sheela, Davis, J, and Cattamanchi, Adithya
- Subjects
HIV ,Patient-centred ,Uganda ,counselling ,implementation science ,patient education ,patient preferences ,peer education ,peer navigation ,sub-Saharan Africa ,tuberculosis ,Humans ,Uganda ,Tuberculosis ,Qualitative Research ,Counseling ,HIV Infections - Abstract
Tuberculosis (TB) education seeks to increase patient knowledge about TB, while TB counselling seeks to offer tailored advice and support for medication adherence. While universally recommended, little is known about how to provide effective, efficient, patient-centred TB education and counselling (TEC) in low-income, high HIV-TB burden settings. We sought to characterise stakeholder perceptions of TEC in a public, primary care facility in Kampala, Uganda, by conducting focus group discussions with health workers and TB patients in the TB and HIV clinics. Participants valued TEC but reported that high-quality TEC is rarely provided, because of a lack of time, space, staff, planning, and prioritisation given to TEC. To improve TEC, they recommended adopting practices that have proven effective in the HIV clinic, including better specifying educational content, and employing peer educators focused on TEC. Patients and health workers suggested that TEC should not only improve TB patient knowledge and adherence, but should also empower and assist all those undergoing evaluation for TB, whether confirmed or not, to educate their households and communities about TB. Community-engaged research with patients and front-line providers identified opportunities to streamline and standardise the delivery of TEC using a patient-centred, peer-educator model.
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- 2022
22. Engaging a community to focus on upper limb function in people with multiple sclerosis: the ThinkHand campaign case study.
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Thomson, Alison, Horne, Rachel, Chapman, Christine, Bharadia, Trishna, Burke, Patrick, Colwell, Elizabeth, Harrington, Mark, Boskovic, Bonnie, Stennett, Andrea, Baker, David, Giovannoni, Gavin, and Schmierer, Klaus
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PATIENTS' attitudes ,MULTIPLE sclerosis ,MEDICAL personnel ,CONSCIOUSNESS raising ,EVIDENCE gaps ,ARM ,OLDER patients - Abstract
Background: Solving complex research challenges requires innovative thinking and alternative approaches to traditional methods. One such example is the problem of arm and hand, or upper limb function in multiple sclerosis (MS), a neurological condition affecting approximately 2.9 million people worldwide and more than 150,000 in the United Kingdom. Historically, clinical trials and research have focused on mobility and walking ability. This excludes a large number of patients who are wheelchair users, limiting their quality of life and restricting access to possibly helpful medications. To address this issue, the ThinkHand campaign was launched in 2016, aiming to raise awareness about the importance of upper limb function in MS and develop alternative ways to measure, record, and account for hand and arm function changes. Main body: The campaign utilised innovative strategies at scientific conferences and online surveys to engage people affected by MS, healthcare professionals, charities, and researchers in discussing the importance of preserving upper limb function. Through co-design and interdisciplinary collaboration, the campaign developed new tools like the low-cost cardboard version of the Nine-Hole Peg Test, facilitating remote monitoring of hand function. Additionally, the campaign co-created the "Under & Over" rehabilitation tool, allowing individuals with advanced MS to participate in a remote rehabilitation program. The impact of the ThinkHand campaign has been significant, helping to shift the focus of both academic and industry-supported trials, including the O'HAND and ChariotMS trials, both using upper limb function as their primary end point. The campaign's patient-centred approach highlighted the importance of recognising patients' perspectives in research and challenged established assumptions and practices. It demonstrated the effectiveness of interdisciplinary collaboration, systems thinking, and co-creation with stakeholders in tackling complex problems. Conclusion: The ThinkHand campaign provides valuable insights for health research practices. By involving patients at all stages, researchers can gain a deeper understanding of the impact of disease on their lives, identify gaps and focus research on their needs. Experimentation and iteration can lead to innovative solutions, and openness to unconventional methods can drive widespread change. The ThinkHand campaign exemplifies the potential of patient-centred approaches to address complex research challenges and revolutionise the field of MS research and management. Embracing such approaches will contribute to more inclusive and impactful research in the future. Plain English Summary: Solving complex research challenges requires creative thinking and new ways of doing things. One such challenge is understanding the problems with arm and hand function in multiple sclerosis (MS), a neurological condition that affects more than 150,000 in the United Kingdom. In the past, research focused mainly on walking ability, leaving out many people who use wheelchairs. To tackle this issue, we created the ThinkHand campaign in 2016. Its goal was to raise awareness about the importance of hand and arm function for people with MS (pwMS) and find better ways to measure changes in these functions such that they can become outcomes in clinical trials. This could provide a pathway to better treatments for pwMS who cannot walk. The campaign used various methods, including surveys, social media posts, exhibitions and music to involve pwMS, healthcare professionals, charities, and researchers in discussions about the issues. Working together, they created tools to support pwMS, particularly those at an advanced stage of the disease (pwAMS), to take part in research and measure their hand and arm function. Through our collaborative approach focusing on patients' perspectives, the campaign challenged old ideas and deeply embedded practices. It showed that collaboration between different areas of expertise involving pwMS at all stages of research can help solve complex problems. This campaign teaches us valuable lessons for health research. When researchers listen to patients and try new things, they can better understand how a disease affects people's lives and develop better solutions. In conclusion, we show how embracing a patient-centred approach can address complex research challenges and improve how we study and manage MS and other conditions in the future. [ABSTRACT FROM AUTHOR]
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- 2024
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23. Riflessione pedagogica e servizi integrati per la personapaziente. Un approccio pedagogico alla Radioterapia.
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Zane, Elisa
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MEDICAL personnel , *ART centers , *PATIENT care , *RADIOTHERAPY , *PROFESSIONAL employees - Abstract
In the daily challenges that healthcare professionals are called upon to face, pedagogical reflection can be a valuable ally to medicine, assisting professionals in managing the dynamics of the patient relationship. The dialogue between medicine and pedagogy represents an opportunity for interdisciplinarity that allows us to transcend the boundaries of science, fostering a vision of holistic patient care. The Radiotherapy department is an ideal setting to understand the patient’s genuine demand for treatment. This contribution, without claiming to be exhaustive, highlights some of the various personalized practices that the Gemelli ART Radiotherapy Center has implemented to place the patient at the centre of the treatment process. Rather than merely describing and classifying these practices, the focus is on reflecting on the foundations of ethically oriented actions undertaken at the Centre. [ABSTRACT FROM AUTHOR]
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- 2024
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24. PACTO – a mHealth tool promoting therapeutic adherence.
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Botelho, Mariana, Pinto, Marta, Lopes, Gonçalo, Casaca, Ana, and Santos, Carolina
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MOBILE health ,MEDICAL personnel ,MEDICAL care costs ,CARDIOVASCULAR disease related mortality ,MEDICAL prescriptions - Abstract
The sustainability and viability of the public health services accessible to all has been widely discussed worldwide, due to the aging of the population, increasing burden of chronic diseases and consequent rising of healthcare expenditures. The mortality and burden of cardiovascular disease is one of the most important drivers of public and private expenses and hypertension and non-compliance with medical prescription one of the leading contributors. Therefore, strategies that promote therapeutic adherence are necessary to control cardiovascular disease and its major outcomes. A solution named PACTO was developed and emphasizes the role of the patient as an active partner of health professionals. PACTO is a mHealth solution with a variety of functionalities that accompanies the patient throughout the treatment journey, with multiple incentives that promote behavioural changes. Finally, PACTO may work in interoperability with other applications already in use in primary healthcare, reducing its initial investment and clinical teams' overload, while increasing adherence, patients' health and quality of life, and sustainability of health systems. [ABSTRACT FROM AUTHOR]
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- 2024
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25. Pharmacotherapy in frail older patients in acute care settings : medicines utilisation and optimisation
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Saeed, Dima, Parsons, Carole, and Carter, Gillian
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Frailty ,frail older patients ,medication use ,medicines optimisation ,medication review ,deprescribing ,patient-centred ,polypharmacy ,Inappropriate prescribing ,complex interventions ,medication-related fall ,pharmacists ,healthcare professionals ,secondary care settings ,acute care settings ,systematic review ,qualitative study ,Delphi technique ,service evaluation ,semi-structured interviews ,pharmacy service - Abstract
Background: Frailty is the most problematic syndrome among older people. It is multifactorial and characterised by decreased reserve and resistance against internal and/or external stressors. Frail patients are at increased risk of adverse drug events, polypharmacy, potentially inappropriate prescribing, falls, unplanned and extended hospitalisations and mortality. To reduce the risk of these complications, prescribing in this vulnerable population should be driven by a patient-centred decision-making approach and a comprehensive medication review is warranted, including patient assessment and subsequent selection of the optimal treatment regimen. Pharmacists, as medication experts, play an essential role in optimising and ensuring the rational use of medications and reducing the risk of medication-related harm, in collaboration with other healthcare professionals (HCPs). However, the implementation of pharmacy services among frail older patients is not yet well established in acute care settings. To date, little work has been conducted to investigate the appropriateness, effectiveness and safety of medication use in hospitalised older frail patients. Additionally, there is limited evidence on the impact of medicines optimisation and the integration of a pharmacist-led medicines optimisation service on quality of prescribing as well as clinical and humanistic outcomes for this vulnerable population. Aim: This research aims to comprehensively study medication use among older frail patients, and the impact of medicines optimisation interventions and the involvement of pharmacists on patient clinical and humanistic outcomes in the acute care setting. Furthermore, it aims to explore HCPs' perspectives of a pharmacist-led medicines optimisation service for frail older patients in the acute care setting. Method: Qualitative and quantitative methodologies were used throughout the four studies described in this thesis. A systematic review was undertaken to determine the effectiveness of medicines optimisation interventions in improving medication appropriateness and clinical and humanistic outcomes in frail older patients in secondary/acute care settings. A service evaluation study was undertaken to evaluate the impact of the Medicines Optimisation in Older People [MOOP] model, a pharmacist-led case management approach, on outcomes and prescribing appropriateness for frail older people admitted to an acute frailty ward. Semi-structured interviews were conducted via telephone and Microsoft Teams with HCPs to explore their experiences and perspectives of the MOOP model. Data saturation was the main determinant of the sample size and thematic data analysis was conducted. Finally, three iterative rounds of a Delphi consensus validation online survey were undertaken to develop and validate a medication-related fall (MRF) screening and scoring tool developed from a tool used in current clinical practice and clinician input. Results: Based on the findings from the systematic review, medicines optimisation may improve medication appropriateness in frail older inpatients. However, the review highlighted the paucity of high-quality evidence examining the impact of medicines optimisation and the involvement of pharmacists on quality of prescribing as well as clinical and humanistic outcomes for frail older inpatients. The service evaluation study of the MOOP service revealed that for the 200 patients recruited into the service, 1020 interventions were made during and post hospitalisation; of these, 92% were assessed as significant and resulted in enhanced care standards. The service also resulted in improvement in prescribing appropriateness, as demonstrated by statistically significant reductions (P-value < 0.05) in Anticholinergic Cognitive Burden (ACB), Anticholinergic Effect on Cognition (AEC) and Medication Appropriateness Index (MAI) scores, falls risk score and total number of prescribed medications. In addition, the MOOP service demonstrated cost savings and reduced the annual medication cost. Semi-structured interviews with HCPs revealed four core themes: the complex patient population; the impact of the service; the key role of the pharmacist in the multidisciplinary team and resource requirements. The MOOP service streamlined and optimised care provision and the discharge process, improved HCPs' knowledge of medication and reduced their workloads, and increased patients' awareness of their medications. Participants acknowledged the MOOP pharmacist as a medication expert and an integral member of the multidisciplinary team. They highlighted the need for funding and staffing resources to support the implementation of the MOOP service to ensure continual delivery of optimal outcomes. Consensus was reached for 19 medications/medication classes to be included in the final version of the MRF tool and to reject eight medications/medication classes. Consensus was not reached regarding eight medications which were not included in the final version. Of the 19 included medications/medication classes, ten were classified as high-risk, eight as moderate-risk and one as low-risk in their potential to cause falls. To qualify and score the falls risk associated with the use of medications, numerical values are allocated to each medication class, with three points allocated to the high-risk medications; two points allocated to the moderate-risk medications and one point allocated to the low-risk medications. The overall medication-related falls risk for the patient is then determined by summing these scores. Conclusion: Medicines optimisation is safe, feasible and effective in improving prescribing appropriateness for frail older patients in acute care settings. A pharmacist-led medicines optimisation service was positively perceived by HCPs who were satisfied with their collaboration with clinical pharmacists in this service which enhanced provision of care and drug therapy, as well as knowledge and prescribing skills. The MRF tool is simple and has the potential to be integrated into medicines optimisation to reduce falls risk and negative fall-related outcomes.
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- 2022
26. An assessment of patient-centred care in patients with chronic musculoskeletal conditions attending chiropractic practice
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Stuber, Kent Jason, Dolan, Gina, and McCarthy, Peter
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patient-centred ,patient-centredness ,Chiropractic ,mixed methods - Abstract
Background: Patient-centred care is seen as an increasingly important component of health care quality, particularly for patients with chronic conditions. Chiropractors frequently see patients with chronic musculoskeletal conditions and the chiropractic profession is often described as patient-centred. Objectives: To assess how patient-centred chiropractic care is for patients with chronic musculoskeletal conditions and gain an understanding of patient and chiropractor experiences and perspectives of how chiropractic care is patient-centred. Design: Mixed methods Methods: An explanatory sequential mixed methods design with quantitative priority was used. Quantitative data was collected from 885 chiropractic patients with chronic musculoskeletal conditions who attended 1 of 20 Canadian chiropractic clinics. The patients each completed a questionnaire that included a modified version of the Patient Assessment of Chronic Illness Conditions (PACIC) to assess the patient-centredness of chiropractic care. Chiropractors from the study clinics completed a questionnaire that included the Patient-Practitioner Orientations Scale (PPOS) to assess chiropractor attitudes and orientation towards patient-centred care. Facilitated focus group interviews were conducted with patients, while individual semi-structured interviews were conducted with chiropractors. Interviews were transcribed and analyzed using thematic analysis. Results: Patient perceptions of more patient-centred care provided by chiropractors were significantly associated with patient satisfaction, younger patient age, having a mental health condition, attending the chiropractor's clinic for fewer years, and the number of chiropractic visits and other healthcare providers seen in the past year. More positive chiropractor attitudes toward patient-centred care were significantly associated with seeing more patients per week and more years in practice. Interview findings largely confirmed the survey findings. Patients described chiropractors as good listeners who provide holistic care. Chiropractors and patients both emphasized the importance of a close, trusting relationship. While chiropractors generally encourage patient engagement, patient involvement in treatment decisions and goal setting typically occurs earlier in their relationship. Follow-up by chiropractors mostly takes place in regular maintenance care visits. Conclusion: The study suggests that patients with chronic musculoskeletal conditions are highly satisfied with the care that they receive from their chiropractors and it incorporates numerous elements of patient-centred care including a close therapeutic relationship, shared decision making and individualized treatment plans tailored to their specific context.
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- 2022
27. The role of standardised product terminology in product development and clinical practice.
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Czaplewski, Greg and Smitka, Kim
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PROFESSIONAL practice ,TERMS & phrases ,MEDICAL quality control ,DIFFUSION of innovations ,PRODUCT design ,NEW product development ,PATIENT care ,DECISION making in clinical medicine ,NURSING education ,PATIENT-centered care ,SURVEYS ,MOTIVATION (Psychology) ,MEDICAL equipment ,OSTOMY ,EVIDENCE-based medicine ,USER-centered system design - Abstract
Convexity products for ostomy care have been available many years. However, there still remains confusion regarding both nomenclature regarding convexity products and their clinical application. This gap creates a non-scientific approach to patient care as the clinician often relies on personal experiences creating more of an 'art-based' approach rather than care delivered from evidence. Recent publications are helping to improve the base knowledge of the clinician with new evidence that supports such clinical decision making in clinical practice. Ultimately, this evidence-based approach can improve patient outcomes by facilitating quality care while assisting product developers to create products that are more humanistic and patientcentered. This article explores some of this recent evidence, some clinical applications substantiated by evidence, and the potential for future product developments and ostomy product standardisation. [ABSTRACT FROM AUTHOR]
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- 2024
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28. What are patients' perspectives on the value of physical therapy? A prospective cohort study.
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Barrett, Dustin R., Nielsen, Lauren M., Rhon, Daniel I., and Young, Jodi L.
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MUSCULOSKELETAL system diseases , *TREATMENT effectiveness , *DESCRIPTIVE statistics , *LONGITUDINAL method , *THEMATIC analysis , *STATISTICS , *PHYSICAL therapy services , *CONFIDENCE intervals , *HEALTH outcome assessment , *PATIENTS' attitudes - Abstract
Purpose: To assess and identify patients' perceptions about the overall value of physical therapy services for musculoskeletal conditions and how these values were associated with their outcomes. Methods: The association between the perceived value of physical therapy (as a score) and Patient‐Reported Outcomes Measurement Information System (PROMIS) pain interference and physical function at 6‐weeks was assessed in a prospective cohort. Generalised linear models were used to identify relationships between the value of physical therapy score and PROMIS outcomes. Kendall's tau was used to identify correlations between responses and outcomes. Results: A total of 133 participants met the final inclusion criteria. The majority of participants were female (63.9%) with a mean age of 55.53 (SD 15.36) years. A majority of participants (63.9%) reported a previous positive personal experience with physical therapy. There was no significant relationship between perceived value of physical therapy and pain interference (β −0.32, p = 0.07, 95% CI−0.67, 0.03) or physical function (β 0.19, p = 0.29, 95% CI−0.16, 0.54). Stronger beliefs in agreement with the value of non‐invasive treatment were significant, but weakly correlated with lower pain interference (r = −0.18, p = 0.048) and higher physical function scores (r = 0.22, p = 0.03). Conclusions: Participants had an overall positive perception of the value of physical therapy prior to initiating physical therapy, but this perception was not associated with 6‐week pain and function outcomes. A better understanding of the driving factors encouraging patients to seek physical therapy services is needed to provide value‐based care. [ABSTRACT FROM AUTHOR]
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- 2024
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29. How Person-Centred Is Cardiac Rehabilitation in England? Using Bourdieu to Explore Socio-Cultural Influences and Personalisation.
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Blackwell, Joanna, Allen-Collinson, Jacquelyn, Evans, Adam, and Henderson, Hannah
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THERAPEUTICS , *ATTITUDE (Psychology) , *RESEARCH methodology , *PSYCHOLOGY of cardiac patients , *SOCIAL theory , *PATIENT decision making , *PATIENT-centered care , *INDIVIDUALIZED medicine , *SOCIAL factors , *INTERVIEWING , *NATIONAL health services , *PATIENTS' attitudes , *EXPERIENCE , *ETHNOLOGY research , *CARDIAC rehabilitation , *PARTICIPANT observation , *THEMATIC analysis , *JUDGMENT sampling , *STATISTICAL sampling , *PATIENT compliance - Abstract
The National Health Service (NHS) cardiac rehabilitation patient care pathway has remained largely unchanged for many years despite, on average, half of all eligible patients declining to engage. To investigate reasons for non-engagement, we explored the experiences of ten cardiac patients who participated in cardiac rehabilitation, dropped out, or declined, as well as experiences of seven people deemed significant others by participants. Our ethnographic study involved participant observations, repeat in-depth semi-structured interviews, and reflexive journaling. Reflexive thematic analysis was conducted, focusing on participants' lived experiences. Utilising Bourdieusian concepts of habitus, capital, and field, this article highlights how personal biography, material conditions, and dispositional inclinations combine to make cardiac health care decision-making individual and complex. Despite this, health professionals were not always attuned to specific circumstances arising from differences in patients' experiences and lifeworlds. By considering service improvement recommendations that acknowledge socio-cultural influences, cardiac rehabilitation can work towards providing patients and their significant others with more appropriate, personalised, and person-centred support. [ABSTRACT FROM AUTHOR]
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- 2024
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30. A discrete choice experiment to quantify the influence of trial features on the decision to participate in cystic fibrosis trials.
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Dobra, Rebecca, Davies, Jane, Elborn, Stuart, Kee, Frank, Madge, Susan, and Boeri, Marco
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CYSTIC fibrosis , *LOGISTIC regression analysis , *DRUG accessibility , *PATIENT experience , *MINIMAL design - Abstract
• It is vital to incorporate patient views into trial design. • We used complex experimental design to find out what pwCF value most when deciding whether to take part in trials. • Location of trial and distance travelled to site were the most important attributes when deciding whether to participate. • Post-trial medicine access, type of medicine, stipend provision and washouts were moderately influential. • Trial design had minimal influence and pwCF do not seem to find placebo-controlled trials off putting. Patient-centred trial design optimises recruitment and retention, reduces trial failure rates and increases the diversity of trial cohorts. This allows safe and effective treatments to reach clinic more quickly. To achieve this, patients' views must be incorporated into trial design. A discrete choice experiment was used to quantify preferences of pwCF for trials features; medicine type, trial location, stipend, washout, drug access on trial completion and trial design. Respondents were presented pairs of hypothetical trial scenarios with different level combinations assigned through experimental design. Respondents were asked to pick their preferred option or decline both. The cross-sectional data were explored using a Random Parameters Logit model. We received 207 eligible responses between Oct2020-Jan2021. The strongest influence on the decision to participate was trial location; pwCF favour participation at their usual clinical centre. Greater travel distances made respondents less willing to participate. Post-trial drug access ranked second. pwCF would rather participate in modulator trials than trials of other drugs. In general, pwCF did not favour a washout period, but were more prepared to washout non-modulators than modulators. Stipend provision was not ranked highly, but higher stipends increased intention to participate. Trial design (placebo vs open-label) had minimal influence on the decision to participate. There are complex interactions between placebos and washouts. We used quantitative methods to systematically elicit preferences of pwCF for clinical trials' features. We explore the relevance of our findings to trial design and delivery in the current CF trials landscape. [ABSTRACT FROM AUTHOR]
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- 2024
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31. Current state-of-the-art and gaps in platform trials: 10 things you should know, insights from EU-PEARL
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Franz Koenig, Cécile Spiertz, Daniel Millar, Sarai Rodríguez-Navarro, Núria Machín, Ann Van Dessel, Joan Genescà, Juan M. Pericàs, Martin Posch, Adrian Sánchez-Montalva, Ana Belén Estevez, Àlex Sánchez, Anna Sanjuan, Elena Sena, Emma Granados, Esther Arévalo de Andrés, Fátima Nuñez, Gara Arteaga, Gabriela Perez Fuentes Ruiz, Guillermo Fernández, Jesus Rivera-Esteban, Joan Comella, Josep Antoni Ramos-Quiroga, Juan Espinosa, Juan Manuel Pericàs, Lada Murcia, Lucinda Cash-Gibson, Maria de Valles Silvosa, María Fernanda Barroso de Sousa, Olga Sánchez-Maroto Carrizo, Pol Ibañez-Jiménez, Salvador Augustin, Santiago Perez-Hoyos, Sergio Muñoz-Martínez, Silvia Serres, Susana Kalko, Amelie Michon, Anton Ussi, Ben Lydall, Edwin van de Ketterij, Ignacio Quiles, Tamara Carapina, Constantin Kumaus, Dariga Ramazanova, Elias Laurin Meyer, Marta Bofill Roig, Martin Brunner, Pavla Krotka, Sonja Zehetmayer, Charlotte Carton, Eric Legius, Amina Begum, Carmine Pariante, Courtney Worrell, Giulia Lombardo, Luca Sforzini, Mollie Brown, Nancy Gullet, Nare Amasi-Hartoonian, Rosalie Ferner, Melisa Kose, Andrea Spitaleri, Arash Ghodousi, Clelia Di Serio, Daniela Cirillo, Federica Cugnata, Francesca Saluzzo, Francesco Benedetti, Maria Giovanna Scarale, Michela Zini, Paola Maria Rancoita, Riccardo Alagna, Sara Poletti, Britt Dhaenens, Johan Van Der Lei, Jurriaan de Steenwinkel, Maxim Moinat, Rianne Oostenbrink, Witte Hoogendijk, Michael Hölscher, Norbert Heinrich, Christian Otte, Cornelia Potratz, Dario Zocholl, Eugenia Kulakova, Frank Tacke, Jelena Brasanac, Jonas Leubner, Maja Krajewska, Michaela Maria Freitag, Stefan Gold, Thomas Zoller, Woo Ri Chae, Christel Daniel, Leila Kara, Morgan Vaterkowski, Nicolas Griffon, Pierre Wolkenstein, Raluca Pais, Vlad Ratziu, David Voets, Christophe Maes, Dipak Kalra, Geert Thienpoint, Jens Deckerck, Nathan Lea, Peter Singleton, Kert Viele, Peter Jacko, Scott Berry, Tom Parke, Burç Aydin, Christine Kubiak, Jacques Demotes, Keiko Ueda, Mihaela Matei, Sergio Contrino, Claas Röhl, Estefania Cordero, Fiona Greenhalgh, Hannes Jarke, Juliana Angelova, Mathieu Boudes, Stephan Dressler, Valentina Strammiello, Quentin Anstee, Iñaki Gutierrez-Ibarluzea, Maximilian Otte, Natalie Heimbach, Benjamin Hofner, Cora Burgwinkel, Hue Kaestel, Katharina Hees, Quynh Nguyen, Daniel Prieto-Alhambra, Eng Hooi (Cheryl) Tan, Mario Raviglione, Pierpaolo de Colombani, Simone Villa, Eduard Maron, Gareth Evans, Adam J. Savitz, Anna Duca, Anne Kaminski, Bie Wouters, Brandon Porter, Catherine Charron, Cecile Spiertz, Christopher Zizzamia, Danny Hasselbaink, David Orr, Divya Kesters, Ellen Hubin, Emma Davies, Eva-Maria Didden, Gabriela Guz, Evelyn Verstraete, Gary Mao, George Capuano, Heddie Martynowicz, Heidi De Smedt, Ingela Larsson, Ines Bruegelmans, Isabelle Coste, Jesus Maria Gonzalez Moreno, Julia Niewczas, Jiajun Xu, Karin Rombouts, Katherine Woo, Kathleen Wuyts, Kathryn Hersh, Khrista Oldenburg, Lingjiao Zhang, Mark Schmidt, Mark Szuch, Marija Todorovic, Maartje Mangelaars, Melissa Grewal, Molli Sandor, Nick Di Prospero, Pamela Van Houten, Pansy Minnick, Polyana Bastos, Robert Patrizi, Salvatore Morello, Severijn De Wilde, Tao Sun, Timothy Kline, Tine de Marez, Tobias Mielke, Tom Reijns, Vanina Popova, Yanina Flossbach, Yevgen Tymofyeyev, Zeger De Groote, Alex Sverdlov, Alexandra Bobirca, Annekatrin Krause, Catalin Bobrica, Daniela Heintz, Dominic Magirr, Ekkehard Glimm, Fabienne Baffert, Federica Castiglione, Franca Caruso, Francesco Patalano, Frank Bretz, Guenter Heimann, Ian Carbarns, Ignacio Rodríguez, Ioana Ratescu, Lisa Hampson, Marcos Pedrosa, Mareile Hark, Peter Mesenbrink, Sabina Hernandez Penna, Sarah Bergues-Lang, Susanne Baltes-Engler, Tasneem Arsiwala, Valeria Jordan Mondragon, Hua Guo, Jose Leite Da Costa, Carl-Fredrik Burman, George Kirk, Anders Aaes-Jørgensen, Jorgen Dirach, Mette Skalshøi Kjær, Alexandra Martin, Diyan Hristov, Florent Rousseaux, Norbert Hittel, Robert Dornheim, Daniel Evans, Nick Sykes, Camille Couvert, Catherine Leuven, Loïc Notelet, Madhavi Gidh-Jain, Mathieu Jouannin, Nadir Ammour, Suzanne Pierre, Volker Haufe, Yingwen Dong, Catherine Dubanchet, Nathalie de Préville, Tania Baltauss, Zhu Jian, Sara Shnider, Tal Bar-El, Annette Bakker, Marco Nievo, Uche Iloeje, Almari Conradie, Ece Auffarrth, Leandra Lombard, Majda Benhayoun, Morounfolu Olugbosi, Stephanie S. Seidel, Berta Gumí, Claudia García Guzmán, Eva Molero, Gisela Pairó, Núria Machin, Raimon Cardelús, Saira Ramasastry, Saskia Pelzer, Andreas Kremer, Erno Lindfors, and Chris Lynch
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Adaptive designs ,Master protocols ,Patient-centred ,Clinical research ,Integrated research platform ,Medicine (General) ,R5-920 - Abstract
Summary: Platform trials bring the promise of making clinical research more efficient and more patient centric. While their use has become more widespread, including their prominent role during the COVID-19 pandemic response, broader adoption of platform trials has been limited by the lack of experience and tools to navigate the critical upfront planning required to launch such collaborative studies. The European Union-Patient-cEntric clinicAl tRial pLatform (EU-PEARL) initiative has produced new methodologies to expand the use of platform trials with an overarching infrastructure and services embedded into Integrated Research Platforms (IRPs), in collaboration with patient representatives and through consultation with U.S. Food and Drug Administration and European Medicines Agency stakeholders. In this narrative review, we discuss the outlook for platform trials in Europe, including challenges related to infrastructure, design, adaptations, data sharing and regulation. Documents derived from the EU-PEARL project, alongside a literature search including PubMed and relevant grey literature (e.g., guidance from regulatory agencies and health technology agencies) were used as sources for a multi-stage collaborative process through which the 10 more important points based on lessons drawn from the EU-PEARL project were developed and summarised as guidance for the setup of platform trials. We conclude that early involvement of critical stakeholder such as regulatory agencies or patients are critical steps in the implementation and later acceptance of platform trials. Addressing these gaps will be critical for attaining the full potential of platform trials for patients. Funding: Innovative Medicines Initiative 2 Joint Undertaking with support from the European Union’s Horizon 2020 research and innovation programme and EFPIA.
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- 2024
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32. Informing a value care model: lessons from an integrated adult neurogenomics clinic.
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McLean, Alison, Tchan, Michel, Devery, Sophie, Smyth, Renee, Shrestha, Rupendra, Kumar, Kishore R., Tomlinson, Susan, Tisch, Stephen, and Wu, Kathy H. C.
- Subjects
- *
CLINICAL pathology , *EVALUATION of medical care , *NEUROLOGICAL disorders , *SEQUENCE analysis , *MEDICAL care costs , *RETROSPECTIVE studies , *ACQUISITION of data , *VALUE-based healthcare , *GENOMICS , *MEDICAL records , *HEALTH care teams , *MEDICAL referrals , *INTEGRATED health care delivery , *POLYMERASE chain reaction , *LONGITUDINAL method , *ADULTS - Abstract
Background: Advances in genomics provide improved opportunities for diagnosis of complex neurogenetic disorders, yet the optimal approach to translate these benefits to the outpatient clinic is unclear. Aims: We retrospectively reviewed referral indications and outcomes of an integrated multidisciplinary team (MDT) clinic pathway for adults with suspected neurogenetic disorders. The associated cost implications were estimated. Methods: Consecutive patients who attended the neurogenomics clinic from January 2017 to April 2020 were included. The clinic comprised neurologists, clinical geneticists and genetic counsellors, who assessed each patient concurrently. Results: Ninety‐nine new patients were referred spanning 45 different clinical diagnoses. Following MDT clinical assessment, 23% (23/99) of referral diagnoses were revised prior to molecular testing. Eighty‐one patients (82%) underwent genetic testing, including 43 exome‐based panels, 15 whole‐genome sequencing, 14 single gene tests, 27 repeat‐primed polymerase chain reaction testing and two chromosomal microarrays. Overall, 33/99 patients (33%) received a diagnosis, either a molecular diagnosis (n = 24, of which 22 were diagnostic and two were predictive) or a clinical diagnosis (n = 9). Of the clinical diagnosis cohort, five patients received a diagnosis without molecular testing and four patients whose negative testing (one diagnostic and three predictive) allowed exclusion of genetic differentials and, hence, confirmation of clinical diagnoses. The diagnostic rate following MDT and diagnostic testing was 30% (28/94), excluding the five predictive testing cases. MDT assessment aligned with eventual molecular diagnoses in 96% of cases. The estimated average costs were AU$1386 per patient undergoing MDT assessment and AU$4159 per diagnosis achieved. Conclusions: We present an integrated multidisciplinary neurogenomics clinic pathway providing a diagnostic yield of 33% (30% excluding predictive testing cases), with costing implications. The relatively high diagnostic yield may be attributed to multidisciplinary input integrating accurate phenotyping of complex disorders and interpretation of genomic findings. [ABSTRACT FROM AUTHOR]
- Published
- 2023
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33. Patients' experiences of patient‐centred care in hospital setting: A systematic review of qualitative studies.
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Havana, Tiina, Kuha, Suvi, Laukka, Elina, and Kanste, Outi
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- *
HOSPITALS , *CINAHL database , *SYSTEMATIC reviews , *PATIENT-centered care , *EXPERIENCE , *PATIENTS' attitudes , *MEDLINE , *THEMATIC analysis , *PATIENT-professional relations - Abstract
Background: Patient‐centred care (PCC) has been proposed as an appropriate approach for addressing current shifts in healthcare needs. Although the importance of PCC is generally recognised, PCC is poorly understood by patients in the hospital settings. Objectives: To identify patients' experiences of PCC in hospital settings. Methodological design: This systematic review followed the Joanna Briggs Institute's (JBI) guidance for systematic reviews of qualitative evidence and the PRISMA checklist for reporting systematic reviews. The search strategy included peer‐reviewed qualitative studies published after 2010 in English or Finnish. The databases searched were SCOPUS, MEDLINE, CINAHL and Medic. Unpublished studies and grey literature were searched in MedNar. Ten qualitative studies were included, and their quality was assessed by two independent reviewers using JBI quality assessment criteria. The data were analysed using thematic analysis. Setting and participants: Studies were included if they had explored adult patient experiences of PCC in hospital settings. Results: A thematic analysis produced 14 subthemes which were grouped into five analytical themes: the presence of the professional, patient involvement in care, receiving information, the patient–professional relationship and being seen as a person. Conclusions and implications: This review suggests that the implementation and provision of PCC in hospitals is incomplete and patients' involvement in their own care should be in the focus of PCC. The majority of patients experienced receiving PCC, but others did not. The need for improvement of patient involvement was strongly emphasised. Patients highlighted the importance of professionals being present and spending time with patients. Patients felt well‐informed about their care but expressed the need for better communication. Meaningful patient–professional relationships were brokered by professionals demonstrating genuine care and respecting the patient as an individual. To improve the implementation of PCC, patient experiences should be considered in the development of relevant hospital care strategies. In addition, more training in PCC and patient–professional communication should be provided to health care professionals. [ABSTRACT FROM AUTHOR]
- Published
- 2023
- Full Text
- View/download PDF
34. Patient-centredness in primary care walk-in clinics for refugees in Hamburg
- Author
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Josephine Nana Hill, Katarina Krüger, Sigrid Boczor, Thomas Kloppe, Olaf von dem Knesebeck, and Martin Scherer
- Subjects
Refugee ,Video interpreter ,Patient-centred ,Shared decision-making ,Empathy ,Patient enablement ,Medicine (General) ,R5-920 - Abstract
Abstract Background The huge increase of refugees to Germany caused a great challenge to the health system. We aimed to examine the level of patient-centredness in medical consultations with refugee patients, aided by video interpreters in primary care walk-in clinics (PCWC) in Hamburg. Methods Videotaped consultations (N = 92) of 83 patients from 2017 to 2018 were analysed. Two raters used the Measure of Patient-Centered Communication (MPCC) and the International Classification of primary care (ICPC-2). MPCC scores with regard to patients’ reason for seeking medical care and the procedures taken were explored using variance analyses adjusted for age, gender, and the duration of the consultation. The duration was further explored by Pearson correlations. Results Patient-centredness of all consultations on average was 64% (95% CI 60–67) according to MPCC, with health-related issues affecting the results. The highest level of patient-centredness was achieved in psychological health issues with 79% (65–94), the lowest in respiratory ones with 55% (49–61). Longer consultations resulted in higher MPCC scores. Conclusions The level of patient-centredness varied in the addressed health issues as well as in the duration of the consultation. Despite the variation, video interpreting in consultations supports a solid patient-centredness. Practice implications We recommend the use of remote video interpreting services for outpatient healthcare to support patient-centred communication and to fill the gap of underrepresentation of qualified interpreters on site, regarding a high diversity of spoken languages.
- Published
- 2023
- Full Text
- View/download PDF
35. Measurement of person-centred consultation skills among healthcare practitioners: a systematic review of reviews of validation studies
- Author
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Anne van Dongen, Duncan Stewart, Jack Garry, and Jim McCambridge
- Subjects
Person-centred ,Patient-centred ,Measurement ,Consultation skills ,Healthcare practitioners ,Special aspects of education ,LC8-6691 ,Medicine - Abstract
Abstract Background Person-centred care is integral to high-quality health service provision, though concepts vary and the literature is complex. Validated instruments that measure person-centred practitioner skills, and behaviours within consultations, are needed for many reasons, including in training programmes. We aimed to provide a high-level synthesis of what was expected to be a large and diverse literature through a systematic review of existing reviews of validation studies a of instruments that measure person-centred practitioner skills and behaviours in consultations. The objectives were to undertake a critical appraisal of these reviews, and to summarise the available validated instruments and the evidence underpinning them. Methods A systematic search of Medline, EMBASE, PsycINFO and CINAHL was conducted in September 2020. Systematic reviews of validation studies of instruments measuring individual practitioner person-centred consultation skills or behaviours which report measurement properties were included. Review quality was assessed with the Joanna Briggs Institute Critical Appraisal Checklist for Systematic Reviews and Research Syntheses. Details of the reviews, the included validation studies, and the instruments themselves are tabulated, including psychometric data, and a narrative overview of the reviews is provided. Results Four reviews were eligible for inclusion. These used different conceptualisations of person-centredness and targeted distinct, sometimes mutually exclusive, practitioners and settings. The four reviews included 68 unique validation studies examining 42 instruments, but with very few overlaps. The critical appraisal shows there is a need for improvements in the design of reviews in this area. The instruments included within these reviews have not been subject to extensive validation study. Discussion There are many instruments available which measure person-centred skills in healthcare practitioners and this study offers a guide to what is available to researchers and research users. The most relevant and promising instruments that have already been developed, or items within them, should be further studied rigorously. Validation study of existing material is needed, not the development of new measures.
- Published
- 2023
- Full Text
- View/download PDF
36. Using a patient-centred composite endpoint in a secondary analysis of the Control of Hypertension in Pregnancy Study (CHIPS) Trial
- Author
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Rebecca K. Metcalfe, Mark Harrison, Joel Singer, Mary Lewisch, Terry Lee, Peter von Dadelszen, Laura A. Magee, Nick Bansback, and the CHIPS Study Group
- Subjects
Patient-centred ,Randomized controlled trial ,Composite endpoints ,Pregnancy hypertension ,Perinatal ,Medicine (General) ,R5-920 - Abstract
Abstract Background Clinical trials commonly use multiple endpoints to measure the impact of an intervention. While this improves the comprehensiveness of outcomes, it can make trial results difficult to interpret. We examined the impact of integrating patient weights into a composite endpoint on the interpretation of Control of Hypertension in Pregnancy Study (CHIPS) Trial results. Methods Outcome weights were extracted from a previous patient preferences study in pregnancy hypertension (N = 183 women) which identified (i) seven outcomes most important to women (taking medication, severe hypertension, pre-eclampsia, blood transfusion, Caesarean, delivery < 34 weeks, and baby born smaller-than-expected) and (ii) three preference subgroups: (1) ‘equal prioritizers’, 62%; (2) ‘early delivery avoiders’, 23%; and (3) ‘medication minimizers’, 14%. Outcome weights from the preference subgroups were integrated with CHIPS data for the seven outcomes identified in the preference study. A weighted composite score was derived for each participant by multiplying the preference weight for each outcome by the binary outcome if it occurred. Analyses considered equal weights and those from the preference subgroups. The mean composite scores were compared between trial arms (t-tests). Results Composite scores were similar between trial arms with the use of equal weights or those of subgroup (1) (95% confidence intervals [CIs]: − 0.03, 0.02; p > 0.50 for each). ‘Tight’ control was superior when using subgroup (2) weights (95% CIs: 0.002, 0.07; p = 0.03), and ‘less-tight’ control was superior when using subgroup (3) weights (95% CIs: − 0.11, − 0.04; p < 0.01). Conclusions Evidence-based recommendations for ‘tight’ control are consistent with most women’s preferences, but for a sixth of women, ‘less-tight’ control is more preference consistent. Depending on patient preferences, a single trial may support different interventions. Future trials should specify component weights to improve interpretation. Trial registration ClinicalTrials.gov NCT01192412
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- 2023
- Full Text
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37. Developing an integrated model of care for vulnerable populations living with non-communicable diseases in Lebanon: an online theory of change workshop.
- Author
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Truppa, Claudia, Ansbro, Éimhín, Willis, Ruth, Zmeter, Carla, El Khatib, Aya, Roberts, Bayard, Aebischer Perone, Sigiriya, and Perel, Pablo
- Subjects
- *
NON-communicable diseases , *THEORY of change , *INTEGRATIVE medicine , *FAMILY support , *FINANCIAL crises - Abstract
Introduction: The Syrian crisis, followed by a financial crisis, port explosion, and COVID-19, have put enormous strain on Lebanon's health system. Syrian refugees and the vulnerable host population have a high burden of Non-communicable Diseases (NCD) morbidity and unmet mental health, psychosocial and rehabilitation needs. The International Committee of the Red Cross (ICRC) recently introduced integrated NCD services within its package of primary care in Lebanon, which includes NCD primary health care, rehabilitation, and mental health and psychosocial support services. We aimed to identify relevant outcomes for people living with NCDs from refugee and host communities in northern Lebanon, as well as to define the processes needed to achieve them through an integrated model of care. Given the complexity of the health system in which the interventions are delivered, and the limited practical guidance on integration, we considered systems thinking to be the most appropriate methodological approach. Methods: A Theory of Change (ToC) workshop and follow-up meetings were held online by the ICRC, the London School of Hygiene and Tropical Medicine and the American University of Beirut in 2021. ToC is a participatory and iterative planning process involving key stakeholders, and seeks to understand a process of change by mapping out intermediate and long-term outcomes along hypothesised causal pathways. Participants included academics, and ICRC regional, coordination, and headquarters staff. Results: We identified two distinct pathways to integrated NCD primary care: a multidisciplinary service pathway and a patient and family support pathway. These were interdependent and linked via an essential social worker role and a robust information system. We also defined a list of key assumptions and interventions to achieve integration, and developed a list of monitoring indicators. Discussion: ToC is a useful tool to deconstruct the complexity of integrating NCD services. We highlight that integrated care rests on multidisciplinary and patient-centred approaches, which depend on a well-trained and resourced team, strong leadership, and adequate information systems. This paper provides the first theory-driven road map of implementation pathways, to help support the integration of NCD care for crises-affected populations in Lebanon and globally. [ABSTRACT FROM AUTHOR]
- Published
- 2023
- Full Text
- View/download PDF
38. Behaviour Change for Oral Health
- Author
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Prescott, Peter, Asimakopoulou, Koula, Lein, Jostein Paul Årøen, Willumsen, Tiril, editor, Lein, Jostein Paul Årøen, editor, Gorter, Ronald C., editor, and Myran, Lena, editor
- Published
- 2022
- Full Text
- View/download PDF
39. Patient-centredness in primary care walk-in clinics for refugees in Hamburg.
- Author
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Hill, Josephine Nana, Krüger, Katarina, Boczor, Sigrid, Kloppe, Thomas, von dem Knesebeck, Olaf, and Scherer, Martin
- Subjects
MEDICAL consultation ,ANALYSIS of variance ,EMPATHY ,NOMADS ,CONFIDENCE intervals ,AGE distribution ,PATIENT-centered care ,PATIENT satisfaction ,PRIMARY health care ,SEX distribution ,PEARSON correlation (Statistics) ,REFUGEES ,COMMUNICATION ,QUESTIONNAIRES ,DECISION making ,DESCRIPTIVE statistics ,INTRACLASS correlation ,RESEARCH funding ,DATA analysis software ,VIDEO recording ,TELEMEDICINE - Abstract
Background: The huge increase of refugees to Germany caused a great challenge to the health system. We aimed to examine the level of patient-centredness in medical consultations with refugee patients, aided by video interpreters in primary care walk-in clinics (PCWC) in Hamburg. Methods: Videotaped consultations (N = 92) of 83 patients from 2017 to 2018 were analysed. Two raters used the Measure of Patient-Centered Communication (MPCC) and the International Classification of primary care (ICPC-2). MPCC scores with regard to patients' reason for seeking medical care and the procedures taken were explored using variance analyses adjusted for age, gender, and the duration of the consultation. The duration was further explored by Pearson correlations. Results: Patient-centredness of all consultations on average was 64% (95% CI 60–67) according to MPCC, with health-related issues affecting the results. The highest level of patient-centredness was achieved in psychological health issues with 79% (65–94), the lowest in respiratory ones with 55% (49–61). Longer consultations resulted in higher MPCC scores. Conclusions: The level of patient-centredness varied in the addressed health issues as well as in the duration of the consultation. Despite the variation, video interpreting in consultations supports a solid patient-centredness. Practice implications: We recommend the use of remote video interpreting services for outpatient healthcare to support patient-centred communication and to fill the gap of underrepresentation of qualified interpreters on site, regarding a high diversity of spoken languages. [ABSTRACT FROM AUTHOR]
- Published
- 2023
- Full Text
- View/download PDF
40. Measurement of person-centred consultation skills among healthcare practitioners: a systematic review of reviews of validation studies.
- Author
-
van Dongen, Anne, Stewart, Duncan, Garry, Jack, and McCambridge, Jim
- Subjects
CINAHL database ,MEDICAL care ,MEASUREMENT - Abstract
Background: Person-centred care is integral to high-quality health service provision, though concepts vary and the literature is complex. Validated instruments that measure person-centred practitioner skills, and behaviours within consultations, are needed for many reasons, including in training programmes. We aimed to provide a high-level synthesis of what was expected to be a large and diverse literature through a systematic review of existing reviews of validation studies a of instruments that measure person-centred practitioner skills and behaviours in consultations. The objectives were to undertake a critical appraisal of these reviews, and to summarise the available validated instruments and the evidence underpinning them. Methods: A systematic search of Medline, EMBASE, PsycINFO and CINAHL was conducted in September 2020. Systematic reviews of validation studies of instruments measuring individual practitioner person-centred consultation skills or behaviours which report measurement properties were included. Review quality was assessed with the Joanna Briggs Institute Critical Appraisal Checklist for Systematic Reviews and Research Syntheses. Details of the reviews, the included validation studies, and the instruments themselves are tabulated, including psychometric data, and a narrative overview of the reviews is provided. Results: Four reviews were eligible for inclusion. These used different conceptualisations of person-centredness and targeted distinct, sometimes mutually exclusive, practitioners and settings. The four reviews included 68 unique validation studies examining 42 instruments, but with very few overlaps. The critical appraisal shows there is a need for improvements in the design of reviews in this area. The instruments included within these reviews have not been subject to extensive validation study. Discussion: There are many instruments available which measure person-centred skills in healthcare practitioners and this study offers a guide to what is available to researchers and research users. The most relevant and promising instruments that have already been developed, or items within them, should be further studied rigorously. Validation study of existing material is needed, not the development of new measures. [ABSTRACT FROM AUTHOR]
- Published
- 2023
- Full Text
- View/download PDF
41. Classifying knowledge used in complementary medicine consultations: a qualitative systematic review
- Author
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Kate Davies, Milena Heinsch, Campbell Tickner, Caragh Brosnan, Amie Steel, Gupteswar Patel, and Molly Marsh
- Subjects
Complementary medicine ,Patient consultation ,Knowledge ,Patient-centred ,Systematic review ,Other systems of medicine ,RZ201-999 - Abstract
Abstract Background Complementary Medicine (CM) is widely used internationally but there is limited understanding of the forms of knowledge CM practitioners use in their clinical practice and how they use this knowledge in interactions with patients. This review aims to synthesise the existing evidence on the forms of knowledge that are mobilised, and the role of this knowledge in the interactions between practitioners and patients during CM consultations. It considered a diverse range of CM practice areas to develop a classification of CM practitioners’ knowledge use in consultations. Methods Systematic searches of health and sociology databases were conducted using core concepts, including complementary and alternative medicine, practitioners, and knowledge. Articles were included where they reported on data from recorded CM practitioner and patient consultations and offered insights into the types and applications of knowledge used in these consultations. 16 unique studies were included in the review. Data were extracted, coded and analysed thematically. Results Results demonstrate that diverse sources of knowledge were mobilised by practitioners, predominantly derived from the patients themselves –their bodies and their narratives. This reflected principles of patient-centredness. The use of discipline specific forms of knowledge and references to biomedical sources illustrated ongoing efforts towards legitimacy for CM practice. Conclusion CM practitioners are navigating tensions between what some might see as competing, others as complementary, forms of knowledge. The classification system provides a useful tool for promoting critically reflective practice by CM practitioners, particularly in relation to self-assessment of knowledge translation and patient interactions.
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- 2022
- Full Text
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42. Meaningful use of a digital platform and structured telephone support to facilitate remote person-centred care – a mixed-method study on patient perspectives
- Author
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Emmelie Barenfeld, Joanne M. Fuller, Sara Wallström, Andreas Fors, Lilas Ali, and Inger Ekman
- Subjects
eHealth ,Tele-Health ,Telemedicine ,Patient-centred ,Patient-centered ,Person-centered ,Public aspects of medicine ,RA1-1270 - Abstract
Abstract Background Process evaluations are useful in clarifying results obtained from randomised controlled trials (RCTs). Traditionally, the degree of intervention usage in process evaluations is monitored by measuring dose or evaluating implementation fidelity. From a person-centred perspective, such evaluations should be supplemented with patients’ experiences of meaningful use, given that intervention use should be agreed upon between interested parties and tailored to each patient. This study aimed to elucidate patients’ experiences of a remote person-centred care (PCC) intervention by deepening the understanding of, if, how and for whom the intervention contributed to meaningful use. Methods Patients (n = 86) were recruited from the RCT PROTECT intervention group. A convergent mixed-method approach was implemented. Data were collected in parallel with the ongoing RCT via a survey, including ratings and written comments on meaningful or non-meaningful use. Also, interviews were performed with twelve purposefully selected participants. Descriptive statistics, logistic regression and content analysis were employed. Data sources were integrated in the results. Results Most participants rated the overall intervention as meaningful to use, with the telephone support rated as most meaningful. Interviews and written comments showed that patient ratings on meaningful use were explained by four categories: Not in need, Communication deficiency, Benefits in everyday life and A personal boost. Meaningful use of rating symptoms on the digital platform was predicted by living alone (adjusted odds ratio [aOR] = 2.8 P = .044). A diagnosis of chronic obstructive pulmonary disease (COPD) predicted meaningful use of digital platform direct messaging (aOR = 3.5, P = .045). Moreover, having access to direct-dial telephone contact explained meaningful use among participants with low ratings of technical competence (aOR = 3.6, P = .014). Conclusions The combined digital platform and structured telephone support could be helpful in identifying preventive actions to maintain health for people diagnosed with COPD and chronic heart failure but tends to be more meaningful for those diagnosed with COPD. Overall, lower adoption of the digital platform was seen compared to telephone support. Shortcomings were noted in the digital platform’s implementation that negatively influences experiences of meaningful use. When used, the intervention proved to be an easily applicable and valued tool to support preventive actions in a person-centred manner.
- Published
- 2022
- Full Text
- View/download PDF
43. Patient‐related outcomes and Oral Health‐Related Quality of Life in endodontics.
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Doğramacı, Esma J. and Rossi‐Fedele, Giampiero
- Subjects
- *
QUALITY of life , *PERIAPICAL periodontitis , *ENDODONTICS , *PATIENT compliance , *PERIAPICAL diseases , *PATIENT satisfaction , *TOOTH fractures - Abstract
There is increased interest in outcome measures that complement the classic goal of endodontics, being the prevention and healing of apical periodontitis. Possible outcome measures can be subdivided into patient‐centred outcomes (PCOs), encompassing data collected by nonpatients aiming to assess the effectiveness of an intervention and patient‐reported outcomes (PROs), which are reported directly by the patient. PROs can be subsequently classed into PRO measures that ascertain patients' view of their symptoms, their functional status, and their health‐related quality of life, and patient‐reported experience measures that focus on aspects including the humanity of care, patient satisfaction, patient preference and adherence, personal costs, expectation fulfilment, and decision regrets. The present review aims to define various patient‐related outcomes and discuss the literature available regarding PCOs and PROs in endodontics. This includes those proposed to assess the effectiveness of endodontic treatment for pulpitis and apical periodontitis for use in the development of European Society of Endodontology S3‐level clinical practice guidelines that have been included by all working groups, except for the radiographic assessment of apical periodontitis. Based on limited evidence in the field, it can be summarized that after recall periods of various lengths, endodontic treatment is associated with a high likelihood of tooth survival and limited need for further intervention, including extraction and further restorative procedures. Oral Health‐Related Quality of Life (OHRQoL) is likely to improve following the completion of treatment. Nonetheless, the literature assessing the association between OHRQoL and endodontics is hampered by the use of instruments that have not been previously validated. Amongst the remaining outcome measures discussed in the present review, it is worth highlighting that there is only one study assessing exacerbations in teeth with the presence of endodontic pathosis, which suggests a very low incidence of this adverse effect following endodontic treatment. Patients' expectation fulfilment, adherence, and satisfaction are closely inter‐related and depend also on various nonclinical factors. Further studies assessing PCOs and PROs, in association with healing and prevention of apical periodontitis, are required to better understand endodontic treatment from the perspective of patients. [ABSTRACT FROM AUTHOR]
- Published
- 2023
- Full Text
- View/download PDF
44. Preventing Wrong Tooth Extraction in Primary Care Oral Surgery: L oc SSIP s – Key Aspects of Implementation for Achieving and Sustaining Compliance.
- Author
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Tagar, Harjit Kaur
- Subjects
DENTAL extraction ,ORAL surgery ,PRIMARY care ,DECIDUOUS teeth ,PATIENT safety - Abstract
The success of Local Safety Standards for Invasive Procedures (LocSSIPs) in preventing wrong tooth extraction and other patient safety incidents is based on sustained staff compliance from the outset, ahead of implementation. This paper (the second of two on the topic of LocSSIPs) aims to equip primary care dental practitioners with key practical solutions to implement LocSSIPs successfully and sustainably, and the leadership knowledge to create a long-term, safe, patient-centred and just service. [ABSTRACT FROM AUTHOR]
- Published
- 2023
- Full Text
- View/download PDF
45. Using a patient-centred composite endpoint in a secondary analysis of the Control of Hypertension in Pregnancy Study (CHIPS) Trial.
- Author
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Metcalfe, Rebecca K., Harrison, Mark, Singer, Joel, Lewisch, Mary, Lee, Terry, von Dadelszen, Peter, Magee, Laura A., and Bansback, Nick
- Subjects
HYPERTENSION in pregnancy ,PREECLAMPSIA ,SECONDARY analysis ,PATIENT preferences ,BLOOD transfusion ,CONFIDENCE intervals - Abstract
Background: Clinical trials commonly use multiple endpoints to measure the impact of an intervention. While this improves the comprehensiveness of outcomes, it can make trial results difficult to interpret. We examined the impact of integrating patient weights into a composite endpoint on the interpretation of Control of Hypertension in Pregnancy Study (CHIPS) Trial results. Methods: Outcome weights were extracted from a previous patient preferences study in pregnancy hypertension (N = 183 women) which identified (i) seven outcomes most important to women (taking medication, severe hypertension, pre-eclampsia, blood transfusion, Caesarean, delivery < 34 weeks, and baby born smaller-than-expected) and (ii) three preference subgroups: (1) 'equal prioritizers', 62%; (2) 'early delivery avoiders', 23%; and (3) 'medication minimizers', 14%. Outcome weights from the preference subgroups were integrated with CHIPS data for the seven outcomes identified in the preference study. A weighted composite score was derived for each participant by multiplying the preference weight for each outcome by the binary outcome if it occurred. Analyses considered equal weights and those from the preference subgroups. The mean composite scores were compared between trial arms (t-tests). Results: Composite scores were similar between trial arms with the use of equal weights or those of subgroup (1) (95% confidence intervals [CIs]: − 0.03, 0.02; p > 0.50 for each). 'Tight' control was superior when using subgroup (2) weights (95% CIs: 0.002, 0.07; p = 0.03), and 'less-tight' control was superior when using subgroup (3) weights (95% CIs: − 0.11, − 0.04; p < 0.01). Conclusions: Evidence-based recommendations for 'tight' control are consistent with most women's preferences, but for a sixth of women, 'less-tight' control is more preference consistent. Depending on patient preferences, a single trial may support different interventions. Future trials should specify component weights to improve interpretation. Trial registration: ClinicalTrials.gov NCT01192412 [ABSTRACT FROM AUTHOR]
- Published
- 2023
- Full Text
- View/download PDF
46. 'In all my years of experience working in the renal charity sector, I have never seen such levels of poverty, hardship, anxiety and distress'.
- Author
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MBE, Sandy Lines
- Subjects
CHARITY ,HEALTH services administration ,PATIENT advocacy ,PATIENT-centered care ,HOME hemodialysis ,TRANSPORTATION of patients ,KIDNEY diseases ,HEALTH insurance reimbursement ,NATIONAL health services ,POVERTY ,ANXIETY ,PSYCHOLOGICAL distress - Abstract
Sandy Lines MBE discusses the latest in the 'cost of staying alive' crisis [ABSTRACT FROM AUTHOR]
- Published
- 2023
- Full Text
- View/download PDF
47. A Strategic Design Analysis to Facilitate the Transition for All to the New Patient-Centered Healthcare Model in China
- Author
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Accolla, Avril, De Luca, Federico, Kacprzyk, Janusz, Series Editor, Gomide, Fernando, Advisory Editor, Kaynak, Okyay, Advisory Editor, Liu, Derong, Advisory Editor, Pedrycz, Witold, Advisory Editor, Polycarpou, Marios M., Advisory Editor, Rudas, Imre J., Advisory Editor, Wang, Jun, Advisory Editor, Shin, Cliff Sungsoo, editor, Di Bucchianico, Giuseppe, editor, Fukuda, Shuichi, editor, Ghim, Yong-Gyun, editor, Montagna, Gianni, editor, and Carvalho, Cristina, editor
- Published
- 2021
- Full Text
- View/download PDF
48. Development of an evidence-informed implementation strategy for a digital supportive care platform for brain tumour patients, their carers and healthcare professionals.
- Author
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Schadewaldt V, O'Brien T, Kalla M, Krishnasamy M, Burns K, Bray SC, Gilbert C, De Abreu Lourenco R, Thomas J, Capurro D, Chapman W, Borda A, Dhillon RS, Whittle JR, and Drummond KJ
- Abstract
Background: Implementation challenges of digital health solutions (DHSs) comprise complexities of behavioural change, resource limitation, inertia in existing systems, and failure to include consumer preferences. Understanding the factors which contribute to successful implementation of DHS is essential. We report the development of an implementation strategy for Brain Tumours Online (BT Online), a digital supportive care platform for patients with brain tumours, their carers and healthcare professionals., Aim: To develop an evidence-informed implementation strategy for BT Online, considering the specific barriers and facilitators to implementing DHS for adults with a brain tumour and their carers and healthcare professionals., Methods: A rapid review methodology was used to summarise factors relevant to implementation of DHS for people affected by cancer. Themes from the review were supported by implementation guidelines for DHS and the combined evidence informed the implementation strategy. Each theme was matched with specific steps for implementing BT Online., Results: The rapid review identified 10 themes, namely, awareness of the new digital platform; institutional integration and support; data security, the quality, usability and accessibility of the platform; belief in the benefit of the platform; the need for holistic and tailored features; the timing of introducing the platform; engagement of healthcare professionals; and the re-definition of roles and workload. The themes were matched with 51 concrete implementation steps., Discussion: The purpose of the strategy was to minimise risk of implementation failure, consider the specific context of care and generate a reference framework to evaluate BT Online prior to upscaling to use outside the research context. Our method contributes a novel approach of developing an evidence-informed rigorous implementation strategy if existing implementation frameworks do not apply., Competing Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2025.)
- Published
- 2025
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49. Patient perspectives of shared decision-making in emergency surgery.
- Author
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Spence R, Moug SJ, Minnis M, Chaudhary A, Docherty M, Jamal S, MacTavish S, and Bisset CN
- Subjects
- Humans, Female, Male, Middle Aged, Adult, Emergencies psychology, Aged, Informed Consent, Surgical Procedures, Operative psychology, Decision Making, Shared, Patient Participation
- Abstract
Aim: Shared decision-making (SDM) is now considered the gold standard approach to counselling and obtaining patient consent. Research into patient perceptions of SDM is lacking and barriers to its implementation remain, specifically in the time-pressurized, high-risk emergency general surgery (EGS) setting. The aim of this work was to explore what EGS patients understand about SDM, gaining insight into their perspectives and experiences to understand the potential barriers both clinicians and patients may face., Method: This work consisted of two parts: part 1 was an initial scoping review to inform the development of part 2-a patient and public involvement (PPI) exercise. The scoping review determined the quantity and quality of research in this area enabling long-listing of known SDM concepts. This long-list developed questions and structured discussions for the PPI exercise. Responses were transcribed, then analysed using thematic analysis., Results: The scoping review found limited evidence for both the implementation of SDM in EGS and patients' perspectives. Seven papers considered SDM in other settings that allowed long-listing of the values and concepts for the PPI exercise. Nine patients and four supporters were identified from an established EGS database. After open discussion of the values and SDM concepts, thematic analysis was performed that identified two key themes: patient perceptions of how surgeons make decisions, and patient experiences of EGS decision-making. Five subtheme analyses showed participants were not aware of surgeons' use of '30-day mortality' and could not quantify surgical risk, feeling time pressures and out of control. Almost all relied on surgeons to make their decision, valuing the surgeon's opinion over their own., Conclusion: With no previous reported evidence, this work provides the first patient insights into SDM in the EGS setting. With multiple barriers identified, further work is essential to increase implementation of this gold standard approach to patient consent., (© 2025 Association of Coloproctology of Great Britain and Ireland.)
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- 2025
- Full Text
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50. End-of-life issues in the ITU - 10 important points to remember.
- Author
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Vincent JL
- Abstract
End-of-life (EOL) issues have become increasingly common in intensive therapy units (ITUs), largely due to advances in critical care that enable patients to be kept alive for extended periods. Death in the ITU now generally follows an EOL decision, which can pose ethical, emotional, and practical challenges. Our approach to such issues should be based on adherence to the four bioethical principles -autonomy, beneficence, nonmaleficence, and distributive justice- as well as the concept of proportionate care, and requires careful and effective communication with the whole ITU team, including the patient and their family. In this article, we discuss 10 key considerations related to EOL care in the ITU, in an attempt to highlight some critical aspects of EOL decision-making for intensivists navigating this sensitive and multifaceted area of practice., (© The Author(s) 2025. Published by Oxford University Press on behalf of the European Society of Cardiology. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)
- Published
- 2025
- Full Text
- View/download PDF
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