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Abstract Background Developments in the care of critically ill patients with severe burns have led to improved hospital survival, but long-term recovery may be impaired. The extent to which patient-centred outcomes are assessed and reported in studies in this population is unclear. Methods We conducted a systematic review to assess the outcomes reported in studies involving critically ill burns patients. Randomised controlled trials (RCTs) and cohort studies on the topics of fluid resuscitation, analgesia, haemodynamic monitoring, ventilation strategies, transfusion targets, enteral nutrition and timing of surgery were included. We assessed the outcomes reported and then classified these according to two suggested core outcome sets. Results A comprehensive search returned 6154 studies; 98 papers met inclusion criteria. There were 66 RCTs, 19 clinical studies with concurrent controls and 13 interventional studies without concurrent controls. Outcome reporting was inconsistent across studies. Pain, reported using the visual analogue scale, fluid volume administered and mortality were the only outcomes measured in more than three studies. Sixty-six studies (67%) had surrogate primary outcomes. Follow-up was poor, with median longest follow-up across all studies 5 days (IQR 3–28). When compared to the suggested OMERACT core outcome set, 53% of papers reported on mortality, 28% reported on life impact, 30% reported resource/economic outcomes and 95% reported on pathophysiological manifestations. Burns-specific Falder outcome reporting was globally poor, with only 4.3% of outcomes being reported across the 98 papers. Conclusion There are deficiencies in the reporting of outcomes in the literature pertaining to the intensive care management of patients with severe burns, both with regard to the consistency of outcomes as well as a lack of focus on patient-centred outcomes. Long-term outcomes are infrequently reported. The development and validation of a core outcome dataset for severe burns would improve the quality of reporting.

Abstract Background Relatively little is understood about real-world provision of oncology care in ambulatory outpatient clinics (OPCs). This study aimed to: 1) develop an understanding of behaviours and practices inherent in the delivery of cancer services in OPC common areas by characterising the organisation and implementation of this care; and 2) identify barriers to, and facilitators of, the delivery of this care in OPC common areas. Methods A purpose-designed ethnographic study was employed in four public hospital OPCs. Informal field scoping activities were followed by in-situ observations, key informant interviews and document review. A view of OPCs as complex adaptive systems was used as a scaffold for the data collection and interpretation, with the intent of understanding ‘work as done’. Data were analysed using an adapted “Qualitative Rapid Appraisal, Rigorous Analysis” approach. Results Field observations were conducted over 135 h, interviews over 6.5 h and documents were reviewed. Analysis found six themes. Staff working in OPCs see themselves as part of small local teams and as part of a broader multidisciplinary care team. Professional role boundaries could be unclear in practice, as duties expanded to meet demand or to stop patients “falling through the cracks.” Formal care processes in OPCs were supported by relationships, social capital and informal, but invaluable, institutional expertise. Features of the clinic layout, such as the proximity of departments, affected professional interactions. Staff were aware of inter- and intra-service communication difficulties and employed strategies to minimise negative impacts on patients. We found that complexity, coordination, culture and capacity underpin the themes that characterise this care provision. Conclusions The study advances understanding of how multidisciplinary care is delivered in ambulatory settings and the factors which promote or inhibit effective care practice. Time pressures, communication challenges and competing priorities can pose barriers to care delivery. OPC care is facilitated by: self-organisation of participants; professional acumen; institutional knowledge; social ties and relationships between and within professional groups; and commitment to patient-centred care. An understanding of the realities of ‘work-as-done’ may help OPCs to sustain high-quality care in the face of escalating service demand.

Plain Language Summary High-quality health care for women and girls should be provided by health workers who are respectful and caring. Health workers should also work with others as a team and help women and girls make their own decisions about their health care. This approach is called patient-centred care. Female genital mutilation (FGM) is a cultural practice associated with poor health outcomes. Women who have experienced FGM have not always received quality health care. We studied the guidance and tools to help health workers provide care to women and girls with or at risk of FGM. This study aimed to understand how health workers are supported to provide woman and girl-centred health care in these documents. We searched for these documents on the websites of health professional associations, government health departments and organisations working in FGM in the United Kingdom, Ireland, Canada, The United States, New Zealand, and Australia. The documents were analysed using a tool that described all the important areas needed to provide patient-centred health care. Of the 124 documents, we found that only 12% contained information about all aspects of patient-centred care. Only one document had details about all the areas that are part of patient-centred care. This study shows that we need to improve the FGM-related guidance provided to health workers to care for and protect women and girls. There is a need for health workers to involve women and girls with or at risk of FGM in designing guidelines and tools and evaluating them to these documents best fit their needs.

Background: Relatively little is understood about real-world provision of oncology care in ambulatory outpatient clinics (OPCs). This study aimed to: 1) develop an understanding of behaviours and practices inherent in the delivery of cancer services in OPC common areas by characterising the organisation and implementation of this care; and 2) identify barriers to, and facilitators of, the delivery of this care in OPC common areas.Methods: A purpose-designed ethnographic study was employed in four public hospital OPCs. Informal field scoping activities were followed by in-situ observations, key informant interviews and document review. A view of OPCs as complex adaptive systems was used as a scaffold for the data collection and interpretation, with the intent of understanding 'work as done'. Data were analysed using an adapted "Qualitative Rapid Appraisal, Rigorous Analysis" approach.Results: Field observations were conducted over 135 h, interviews over 6.5 h and documents were reviewed. Analysis found six themes. Staff working in OPCs see themselves as part of small local teams and as part of a broader multidisciplinary care team. Professional role boundaries could be unclear in practice, as duties expanded to meet demand or to stop patients "falling through the cracks." Formal care processes in OPCs were supported by relationships, social capital and informal, but invaluable, institutional expertise. Features of the clinic layout, such as the proximity of departments, affected professional interactions. Staff were aware of inter- and intra-service communication difficulties and employed strategies to minimise negative impacts on patients. We found that complexity, coordination, culture and capacity underpin the themes that characterise this care provision.Conclusions: The study advances understanding of how multidisciplinary care is delivered in ambulatory settings and the factors which promote or inhibit effective care practice. Time pressures, communication challenges and competing priorities can pose barriers to care delivery. OPC care is facilitated by: self-organisation of participants; professional acumen; institutional knowledge; social ties and relationships between and within professional groups; and commitment to patient-centred care. An understanding of the realities of 'work-as-done' may help OPCs to sustain high-quality care in the face of escalating service demand. [ABSTRACT FROM AUTHOR]

This article reads Charlotte Brontë's letters documenting her sister Emily Brontë's experience of tuberculosis in late 1848, considering how the correspondence has cultivated a one-sided account of Emily's final months. Rereading the letters analytically, I argue that the differences between the sisters that Charlotte articulates gravitate around her implicit conception of the "good" consumptive, with Emily's resistance positioning her unfairly as a "bad" patient. Informed by Roy Porter's conception of "patient centred", I read against the grain of Charlotte's letters to challenge dominant accounts of Emily's illness and death. I suggest that when considered contextually and from Emily's point of view, Charlotte letters offer alternate ways to understand Emily's experience of tuberculosis and her behaviour in her final months. [ABSTRACT FROM AUTHOR]

Background: Recruitment and retention of participants in clinical trials for Parkinson's disease (PD) is challenging. A qualitative study embedded in the PD STAT multi-centre randomised controlled trial of simvastatin for neuroprotection in PD explored the motivators, barriers and challenges of participants, care partners and research staff. Objective: To outline a set of considerations informing a patient-centred approach to trial recruitment, retention, and delivery. Method: We performed semi-structured interviews and focus groups with a subset of trial participants and their care partners. Quantitative and qualitative data were obtained through surveys circulated among the 235 participants across 23 UK sites at the beginning, middle and end of the 2-year trial. We also interviewed and surveyed research staff at trial closure. Results: Twenty-seven people with PD, 6 care partners and 9 researchers participated in interviews and focus groups. A total of 463 trial participant survey datasets were obtained across three timepoints, and 53 staff survey datasets at trial closure. Trial participants discussed the physical and psychological challenges they faced, especially in the context of OFF state assessments, relationships, and communication with research staff. Care partners shared their insights into OFF state challenges, and the value of being heard by research teams. Research staff echoed many concerns with suggestions on flexible, person-centred approaches to maximising convenience, comfort, and privacy. Conclusion: These considerations, in favour of person-centred research protocols informed by the variable needs of participants, care partners and staff, could be developed into a set of recommendations for future trials. [ABSTRACT FROM AUTHOR]

Objectives: To identify key attributes of healthcare quality relevant to patients and kin and to compare them to Lachman's multidimensional quality model.Methods: Four focus groups with patients and kin were conducted using a semi-structured interview guide and a purposive sampling method. Classical content analysis and constant comparison method were used to focus data analysis on individual and group level.Results: Communication with patients, kin and professionals emerged as a new dimension from interview transcripts. Other identified key attributes largely corresponded with Lachman's multidimensional quality model. They were mainly classified in dimensions: 'Partnership and Co-Production', 'Dignity and Respect' and 'Effectiveness'. Technical quality dimensions were linked to organisational aspects of care in terms of staffing levels and time. The dimension 'Eco-friendly' was not addressed by patients or kin.Conclusions: The results enhance the comprehension of healthcare quality and contribute to its academic understanding by validating Lachman's multidimensional quality model from patients' and kin's perspective. The model robustness is increased by including communication as a quality dimension surrounding technical domains and core values.Practice Implications: The key attributes can serve as a holistic framework for healthcare organisations to design their quality management system. An instrument can be developed to measure key attributes. [ABSTRACT FROM AUTHOR]

Participation in clinical work is important for medical students' professional development. However, students often report that they experience a passive observer role, and further research on contextual factors that influence student participation is needed. The theory of practice architectures contributes a new perspective to this challenge by elucidating how cultural-discursive, material-economic, and social-political arrangements enable and constrain student participation in clinical work. The aim of this study was to explore how practice architectures in clinical learning environments enable and constrain medical students' participation. The study was designed as an ethnographic field study in three student clinics: 106 h of observation. Analysis comprised ethnographic analysis followed by application of the theory of practice architectures. The ethnographic analysis resulted in six themes: setting the scene, when to call for help, my room – my patient, getting in a routine, I know something you don't, and my work is needed. Applying the theory of practice architectures showed that material-economic arrangements, such as control of the consultation room and essential artefacts, were crucial to student participation and position in the clinical workplace. Furthermore, co-production of a student mandate to independently perform certain parts of a consultation enabled a co-productive student position in the hierarchy of care-producers. The findings offer a conceptually generalisable model for the study of material and social dimensions of clinical learning environments. Although not all clinical learning environments may wish to or have the resources to implement a student clinic, the findings offer insights into general issues about the arrangements of student participation relevant to most clinical teaching contexts. [ABSTRACT FROM AUTHOR]

Introduction. Sponsors of clinical trials propose variations of home visits and virtual contact points with the patients instead of visits at the clinical sites, as well as other digital and remote solutions. The objective of the study was to search and analyse the experience and practice of European countries on applying decentralized elements and a hybrid approach of conducting clinical trials’ activities and procedures, as well as to establish the applicable rules and regulation. Material and methods. A questionnaire survey was conducted among European countries in the period December 2020 – February 2021, by email communication. Results. In most of the countries, it was not forbidden, and respondents indicated the opportunity of medical specialists to help patients at their home. 37.50% of the countries indicated that the applicable legislation cannot be related to the medical or clinical trials legislation or national commercial law but “Other”. Based on the practice, all or some of the activities can be done as a home care. 68.75% responded negatively to the application of the “site-less” model, but 81.25% considered that the combination of on-site and home visits can be better than only visits at sites. Conclusion. Based on this research, the implementation of decentralized elements in the clinical trials in Europe is often based on a case-by-case evaluation only. Notwithstanding the application of various national requirements and acts, they are either fragmentary, or not specifically applicable for such cases.

Abstract Background Myasthenia gravis (MG) is a chronic autoimmune neuromuscular disease, characterised by fluctuating muscle weakness which makes it challenging to assess symptom severity. Mixed methods psychometrics (MMP), which combines evidence from qualitative research and modern psychometrics, is a versatile approach to the development of patient-centred outcome measures (PCOM) in the context of rare disease. Our objective was to develop the MG Symptom patient-reported outcome (PRO) to assess key aspects of MG severity from the patient perspective. Methods We used MMP to develop a novel PRO instrument in a multi-step process. An initial conceptual model for MG patient experience was developed and expanded based on preliminary literature review and two waves of concept elicitation interviews with people with MG (Step 1). Based on this, the novel PRO instrument, the MG Symptoms PRO, was drafted. The draft instrument was refined by combining qualitative and quantitative data collected in a Phase 2 clinical study (Step 2). Results Findings from the literature review and concept elicitation interviews (n = 96) indicated that patient experience in MG includes proximal muscle weakness symptoms related to several body parts, along with muscle weakness fatigability and general fatigue. Then, a set of 42 items across five scales (ocular-, bulbar-, and respiratory muscle weakness, physical fatigue, and muscle weakness fatigability) was developed. Qualitative evidence endorsed its relevance, clarity, and ease of completion; quantitative analysis with Rasch measurement theory methods demonstrated strong measurement properties, including good targeting and high reliability. Classical test theory analyses showed adequate reliability of the instrument and mild to moderate correlations with other widely used MG-specific outcome measures. Conclusions The MG Symptoms PRO has potential to be used both to measure treatment benefit in clinical trials and monitor symptom severity in clinical practice. Its component scales were purposefully designed to stand alone, enhancing interpretability of scores given the heterogeneity of MG, and enabling modular use. Compared with existing MG PROs, it contains more detailed assessments of muscle weakness and muscle weakness fatigability symptoms, which are of key importance to people with MG. The MMP approach used may serve as a case study for developing PCOMs across rare disease indications.

Jessica Wihl,1– 3 Linn Rosell,1,2 Kirsten Frederiksen,4 Sara Kinhult,1,3 Gert Lindell,5 Mef Nilbert1,4,6 1Department of Clinical Sciences Lund, Division of Oncology and Pathology, Lund University, Lund, Sweden; 2Regional Cancer Centre South, Region Skåne, Lund, Sweden; 3Department of Hematology, Oncology and Radiation Physics, Skåne University Hospital, Lund, Sweden; 4Danish Cancer Society Research Centre, Copenhagen, Denmark; 5Department of Surgery, Skåne University Hospital, Lund, Sweden; 6Clinical Research Centre, Hvidovre University Hospital and Copenhagen University, Copenhagen, DenmarkCorrespondence: Jessica WihlDepartment of Clinical Sciences Lund, Division of Oncology and Pathology, Lund University, Scheelev. 2, Lund, 223 63, SwedenEmail jessica.wihl@med.lu.sePurpose: Multidisciplinary team (MDT) meetings integrate complex information and base recommendations for clinical management on interdisciplinary and multiprofessional decision-making. To support high-quality decision-making and define key performance indicators, we aimed to determine completeness of case information and contributions to MDT case discussions in cancer care.Methods: In a prospective observational study design, based on three MDTs, we applied the Metric for Observation of Decision-Making (MODe) tool to assess the quality of case presentation and team members’ contributions to case discussions. The MDTs handled patients with brain tumors, soft tissue sarcomas and hepatobiliary cancers. The results were correlated to patient and team characteristics and to MDT leadership skills.Results: Data were collected from 349 case discussions during 32 MDT meetings. Information on radiology received the highest scores, followed by case history and information on histopathology. Patient-related information was less frequently mentioned and generally received low scores. Contributions to the case discussions were predominantly by the chair, surgeons, and oncologists with limited contributions from nurses. Leadership skills showed a positive correlation with case presentations scores and failure to reach a treatment recommendation correlated with lower case discussion scores.Conclusion: Considerable resources are spent on MDT meetings in cancer care, which motivate initiatives to ensure high-quality and efficient decision-making processes. We identify unbalanced contributions from team members during MDT meetings, demonstrate limited provision of patient-related information and show that leadership skills may positively influence the quality of the case presentations. We suggest that MDTs should consider and develop these aspects to ensure high-quality MDT-based case management and decision-making.Keywords: tumor board, cancer conference, decision-making, patient-centred, comorbidity

Supportive care may have significant input into the treatment of patients with heart failure (HF). Support, understanding and being treated as a whole and unique person are vital for patients with HF. In order to develop a person-centred program, it is important to know patients’ needs from their perspectives. The aim of the current review and meta-synthesis was to explore the needs of patients with HF from their perspective. A qualitative review was conducted using the keywords: (“needs” OR “need”) AND (“heart failure”) AND (“qualitative”) in four databases. Pre-defined inclusion and exclusion criteria were set. The ‘Consolidated criteria for reporting qualitative studies’ item checklist was used to assess the research methodologies of the included studies. A “thematic synthesis” methodological approach was used: (1) Line by line coding of the findings from primary studies. (2) The resulting codes were organized into related areas thus building descriptive themes. (3) Analytical themes were developed. Eleven articles were included in the present review. The results from the meta-synthesis extracted five different categories covering patents’ needs: Self-management, palliative care, supportive care, social support and continuing person-centred care. The need for continuing empowerment and support to meet those needs was also identified, revealing the core theme: ‘Wind beneath my wings’. The meta-synthesis quotations highlighted the necessity for dynamic and interactive continuing person-centred care focusing on the ongoing patients’ needs through the HF trajectory. Giving more emphasis to the human dimension and holistic approach of patients with HF, along with cardiology medicine development might be a key factor in improving clinical outcomes and health related quality of life.

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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. [ABSTRACT FROM AUTHOR]

Objective: The importance of ensuring that patients understand and remember information from rheumatology consultations is well recognised. However, literature focuses on 'one-size-fits-all' information resources. In this qualitative study our 'upclose, in-depth, inside-out' exploration sought to understand the personalised written consultation summary, a rheumatologist's patient-centred strategy developed through ongoing reflection.Methods: A research team of a rheumatologist, practice nurse, two patients, registrar and researcher used a participatory research approach, collaborative inquiry Semistructured interviews were undertaken with 29 patients. Data analysis was dialogical and iterative, moving from descriptive to conceptual.Results: Implicit within the personalised written consultation summary were domains and actions of: INVOLVEMENT in the process (contributing to the content, clarifying and negotiating the content, being present as it is written), CONTINUITY of information (taking the summary, sharing it with others, storing it at home) and SECURITY for ongoing management (owning the summary, being reminded about management plans, having a basis for re-checking).Conclusion: Aligned with the findings are patient-centred intentions for health literacy, personal health information management and medication adherence. The second highlights an important theoretical basis for patient-centred rheumatology strategies beyond consultations.Practice Implications: A model and reflective questions are presented to inform ongoing reflections about patient-centred information strategies. [ABSTRACT FROM AUTHOR]

Objective: The purpose of this study was to provide an overview of existing methods used to develop a Question Prompt List (QPL) for an oncology setting.Methods: We conducted a search of the literature published between 1999 and 2019 in five online databases followed by a hand search, and extracted data on the methods used to develop a QPL.Results: A total of 21 studies were included. The review shows differences in the development of older QPLs (1999-2009) and current QPLs (2010-2019). However, most QPLs were developed using interviews or focus groups with patients and an expert session to review or adapt the QPL. Health professionals, patients, and researchers were included in nearly all the studies.Conclusion: To develop a QPL, it is important to combine several information sources and at least to involve health professionals, patients, and researchers in the development process. Review or evaluation steps can improve the appropriateness and acceptance of a QPL.Practice Implications: Further research is needed to define the type of target population for new QPLs and to develop a framework for their development. [ABSTRACT FROM AUTHOR]

Background: This study was designed to investigate how patient-reported shared decision-making relates to other aspects of patient centredness and satisfaction. Methods: Questionnaire study with patients. Consecutive patients in primary care responding post visit. Associations are presented as proportions, positive predictive values, with 95% confidence intervals. Results: 223 patient questionnaires were included. 62% (95% Confidence interval (CI): 55–69) of the patients indicated the highest possible rating of being involved in the decisions about their ongoing care (self-reported SDM). Self-reported SDM had a positive predictive value (PPV) of between 85% (CI: 77–90) and 95% (CI: 90–98) for five other patient-centred aspects and satisfaction. Conclusion: The results suggest that shared decision making is the patient-centred aspect hardest to achieve and that a patient-centred process leading up to the decision-making increases the chance of the patient being involved in the decision-making. [ABSTRACT FROM AUTHOR]

The purpose of this commentary is to consider circumstances under which it may be ethical to permit patients to use licit substances in rehabilitation contexts. While the content of this commentary may be transferable to other healthcare spaces, our focus on rehabilitation is based on some important distinctions that exist between rehabilitation and acute care spaces. [ABSTRACT FROM AUTHOR]

Introduction/Purpose: To compare knee arthrocentesis first‐attempt success using landmark‐guided, ultrasound‐localised and ultrasound‐guided techniques when performed by third‐year medical students. Methods: In this prospective, crossover study with randomised order of events, medical students performed three different arthrocentesis techniques on knee models: landmark‐guided, ultrasound‐localised and ultrasound‐guided. Each subject attempted the techniques in a randomly assigned permutation at both high‐ and low‐volume simulated knee effusions. The data were analysed with general estimating equations, which produced odds ratios comparing first‐attempt success between different techniques at all effusion volumes. Results: Ninety four of 111 third‐year medical students were enrolled. Proportions of first‐attempt success for the landmark‐guided, US‐localised and US‐guided were 72%, 86% and 75%, respectively. For all effusion volumes, US‐localised demonstrated a statistically significant increase in first‐attempt success over the landmark‐guided technique, OR = 2.38 (95% CI: 1.52–3.70). There was a greater increase in first‐attempt success at low‐volume effusions, OR = 2.86 (95% CI: 1.47–5.56), but no significant increase at high‐volume effusions: OR = 1.85 (95% CI: 1.00–3.45). For all effusion volumes, US‐guided demonstrated no difference to first‐attempt success compared with landmark, OR = 1.15 (95% CI: 0.71–1.85). At low‐volume effusions, US‐guided demonstrated a statistically significant increase in first‐attempt success over landmark‐guided, OR = 2.17 (95% CI: 1.10–4.35), with no significant difference at high volumes, OR: 0.55 (95% CI: 0.28–1.06). Discussion: The data presented here suggest that in this simulated knee model of arthrocentesis, ultrasound‐guided approaches tend to have best efficacy at lower volume effusions, while ultrasound localized tends to do best at higher volume effusions, and both tended to perform better than the landmark technique. This study specifically looked at novices to both arthrocentesis and ultrasound, so extrapolating these results to other groups would require more study, but suggests that ultrasound incorporation into arthrocentesis benefits may offer some benefits for success rates and first attempt success. Conclusion: In simulated knee arthrocentesis, ultrasound‐guided techniques increased first‐attempt success over landmark‐guided techniques among medical students. This increase was most evident for arthrocentesis of smaller volume effusions. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Issue addressed: Australian pharmacists are increasingly moving towards the provision of patient‐centred professional pharmacy services for chronic disease management. Some of these services are targeted towards improving patients' health and wellbeing through the facilitation of patient‐driven health behaviour change. This paper investigates whether the provision of behaviour change interventions by Australian pharmacists is adequately underpinned by the current competency framework. Methods: The foundation and behaviour change competences within each of the domains in the generic health behaviour change competency framework (GHBC‐CF), was mapped to the Australian pharmacist competency framework. Results: Although the Australian competency framework underpins most of the foundation and behaviour change competences of the GHB‐CF required to undertake low‐intensity interventions, for medium to high‐intensity interventions four specific task‐related competences need to be addressed. These are F12 'Ability to recognise barriers to and facilitators of implementing interventions', BC4 'ability to agree on goals for the intervention', BC5 'capacity to implement behaviour change models in a flexible but coherent manner' and BC6 'capacity to select and skilfully apply most appropriate intervention method'. Conclusion: Additional training is necessary if pharmacists aspire to provide behaviour change interventions for chronic disease management, in particular those that are complex as they involve changes to multiple health behaviours. So what?: The identification of these gaps is critical and can potentially be addressed in postgraduate training programs and as pharmacy curricula are updated. [ABSTRACT FROM AUTHOR]

Abstract Background Patient and family engagement in health care has emerged as a critical priority. Understanding engagement, from the perspective of the patient and family member, coupled with an awareness of how patient and family members are motivated to be involved, is an important component in increasing the effectiveness of patient engagement initiatives. The purpose of this research was to co‐design a patient and family engagement framework. Methods Workshops were held to provide additional context to the findings from a survey. Participants were recruited using a convenience sampling strategy. Workshop data collected were analysed using a modified constant comparative technique. The core research team participated in a workshop to review the findings from multiple inputs to inform the final framework and participated in a face validity exercise to determine that the components of the framework measured what they were intended to measure. Results The framework is organized into three phases of engagement: why I got involved; why I continue to be involved; and what I need to strengthen my involvement. The final framework describes seven motivations and 24 statements, arranged by the three phases of engagement. Conclusion The results of this research describe the motivations of patient and family members who are involved with health systems in various roles including as patient advisors. A deeper knowledge of patient and family motivations will not only create meaningful engagement opportunities but will also enable health organizations to gain from the voice and experience of these individuals, thereby enhancing the quality and sustainability of patient and family involvement.

Abstract Background The Patient Perception of Patient‐Centeredness (PPPC) questionnaire was revised, and there is a need for the questionnaire to be tested in diverse primary care populations. Objectives This study aimed to examine the factor structure of the Revised PPPC questionnaire (PPPC‐R) in French‐speaking patients with multimorbidity. Design Secondary analysis from baseline data of the French arm of Patient‐Centered Innovations for Persons with Multimorbidity Study (PACEinMM Study). Setting and participants Participants were adult patients with multimorbidity attending primary health‐care settings. Outcome measures Exploratory factor analyses were applied to examine the factor structure of the PPPC‐R. Cronbach's alpha values were calculated to assess the internal consistency of the whole questionnaire and of each factor explored. Results There were 301 participants, mean age 61.0, 53.2% female. The PPPC‐R showed very good internal consistency, with three factors: Patient‐Centered Clinical Method (PCCM) Component 1‐Exploring the health, disease and illness experience + PCCM Component 4‐Enhancing the patient–clinician relationship (Factor 1); PCCM Component 2‐Understanding the whole person (Factor 2); and PCCM Component 3‐Finding common ground (Factor 3). There was a good internal consistency within each factor (Cronbach's α = 0.87 for 8 items in Factor 1, 0.77 for 5 items in Factor 2 and 0.87 for 5 items in Factor 3). Discussion and conclusions The French PPPC‐R factor structure was in accordance with the underpinning conceptual model and presented with three factors. Further assessment of its validity and reproducibility are needed to allow its use as a measure of patient's perception of patient‐centeredness.

Objectives: Our intention was to develop a meta-understanding of the 'human aspects' of providing palliative care. Integral to developing this meta-understanding was recognising the individuality of people, their varied involvements, situations, understandings, and responses, and the difficulty in stepping back to get a whole view of this while being in the midst of providing palliative care. We intended for this meta-understanding to inform reflections and sense-making conversations related to people's changing situations and diverse needs. Methods: Using collaborative inquiry, this qualitative research was undertaken 'with' clinicians rather than 'on' them. Our team (n = 7) was composed of palliative care clinicians and researchers from a co-located rural health service and university. We explored our personal perceptions and experiences through a series of 12 meetings over 8 months. In addition, through five focus groups, we acccessed perceptions and experiences of 13 purposively sampled participants with a range of roles as carers and/or healthcare providers. Data were dialogically and iteratively interpreted. Findings: Our meta-understanding of 'human aspects' of providing palliative care, represented diagrammatically in a model, is composed of ATTRIBUTES OF HUMANITY and ACTIONS OF CARING. ATTRIBUTES OF HUMANITY are death's inevitability, suffering's variability, compassion's dynamic nature, and hope's precariousness. ACTIONS OF CARING include recognising and responding, aligning expectations, valuing relationships, and using resources wisely. The meta-understanding is a framework to keep multiple complex concepts 'in view' as they interrelate with each other. Significance of findings: Our meta-understanding, highlighting 'human aspects' of providing palliative care, has scope to embrace complexity, uncertainty, and the interrelatedness of people in the midst of resourcing, requiring, and engaging in palliative care. Questions are posed for this purpose. The non-linear diagrammatic representation of ATTRIBUTES OF HUMANITY and ACTIONS OF CARING facilitates multiple ways of engaging and revisiting palliative care situations or navigating changes within and across them. [ABSTRACT FROM AUTHOR]

Background: Developments in the care of critically ill patients with severe burns have led to improved hospital survival, but long-term recovery may be impaired. The extent to which patient-centred outcomes are assessed and reported in studies in this population is unclear.Methods: We conducted a systematic review to assess the outcomes reported in studies involving critically ill burns patients. Randomised controlled trials (RCTs) and cohort studies on the topics of fluid resuscitation, analgesia, haemodynamic monitoring, ventilation strategies, transfusion targets, enteral nutrition and timing of surgery were included. We assessed the outcomes reported and then classified these according to two suggested core outcome sets.Results: A comprehensive search returned 6154 studies; 98 papers met inclusion criteria. There were 66 RCTs, 19 clinical studies with concurrent controls and 13 interventional studies without concurrent controls. Outcome reporting was inconsistent across studies. Pain, reported using the visual analogue scale, fluid volume administered and mortality were the only outcomes measured in more than three studies. Sixty-six studies (67%) had surrogate primary outcomes. Follow-up was poor, with median longest follow-up across all studies 5 days (IQR 3-28). When compared to the suggested OMERACT core outcome set, 53% of papers reported on mortality, 28% reported on life impact, 30% reported resource/economic outcomes and 95% reported on pathophysiological manifestations. Burns-specific Falder outcome reporting was globally poor, with only 4.3% of outcomes being reported across the 98 papers.Conclusion: There are deficiencies in the reporting of outcomes in the literature pertaining to the intensive care management of patients with severe burns, both with regard to the consistency of outcomes as well as a lack of focus on patient-centred outcomes. Long-term outcomes are infrequently reported. The development and validation of a core outcome dataset for severe burns would improve the quality of reporting. [ABSTRACT FROM AUTHOR]

Background: A woman and girl centred, rights-based approach to health care is critical to achieving sexual and reproductive health. However, women with female genital mutilation in high-income countries have been found to receive sub-optimal care. This study examined documents guiding clinicians in health and community service settings in English-speaking high-income countries to identify approaches to ensure quality women and girl-centred care for those with or at risk of female genital mutilation. Method: We undertook a scoping review using the integrative model of patient-centredness to identify principles, enablers, and activities to facilitate woman and girl-centred care interactions. We developed an inclusion criterion to identify documents such as guidance statements and tools and technical guidelines, procedural documents and clinical practice guidelines. We searched the databases and websites of health professional associations, ministries of health, hospitals, national, state and local government and non-government organisations working in female genital mutilation in the United Kingdom, Ireland, Canada, The United States, New Zealand, and Australia. The Appraisal of Guidelines for Research and Evaluation tool was used to appraise screened documents. Findings: One-hundred and twenty-four documents were included in this scoping review; 88 were developed in the United Kingdom, 20 in Australia, nine in the United States, three in Canada, two in New Zealand and two in Ireland. The focus of documents from the United Kingdom on multi-professional safeguarding (62), while those retrieved from Australia, Canada, Ireland, New Zealand and the US focused on clinical practice. Twelve percent of the included documents contained references to all principles of patient-centred care, and only one document spoke to all principles, enablers and activities. Conclusion: This study demonstrates the need to improve the female genital mutilation-related guidance provided to professionals to care for and protect women and girls. Professionals need to involve women and girls with or at risk of female genital mutilation in the co-design of guidelines and tools and evaluation of them and the co-production of health care. Plain Language Summary: High-quality health care for women and girls should be provided by health workers who are respectful and caring. Health workers should also work with others as a team and help women and girls make their own decisions about their health care. This approach is called patient-centred care. Female genital mutilation (FGM) is a cultural practice associated with poor health outcomes. Women who have experienced FGM have not always received quality health care. We studied the guidance and tools to help health workers provide care to women and girls with or at risk of FGM. This study aimed to understand how health workers are supported to provide woman and girl-centred health care in these documents. We searched for these documents on the websites of health professional associations, government health departments and organisations working in FGM in the United Kingdom, Ireland, Canada, The United States, New Zealand, and Australia. The documents were analysed using a tool that described all the important areas needed to provide patient-centred health care. Of the 124 documents, we found that only 12% contained information about all aspects of patient-centred care. Only one document had details about all the areas that are part of patient-centred care. This study shows that we need to improve the FGM-related guidance provided to health workers to care for and protect women and girls. There is a need for health workers to involve women and girls with or at risk of FGM in designing guidelines and tools and evaluating them to these documents best fit their needs. [ABSTRACT FROM AUTHOR]

Aims: Drug tolerability refers to the degree to which drugs' overt adverse effects can be tolerated by patients. The tolerability profile is of comparative importance to its efficacy and safety, as it largely determines adherence to treatment and ultimately treatment success or failure. However, the term is frequently used imprecisely, and it is unclear if tolerability is limited to subjective patient‐reported symptoms or also covers certain objective signs and findings. The aim of this systematic review was to assess how clinical studies define, evaluate and present drug tolerability. Methods: The study consisted of a systematic review of clinical studies in PubMed® reporting the term "tolerability". Results: Eighty clinical studies were screened and 56 studies reporting drug tolerability were retained. None of the retained studies defined events encompassed by the term tolerability by making a distinction between safety and tolerability. Twenty‐five studies claimed to evaluate tolerability, but none of them described how to evaluate tolerability from the patient perspective. Most studies (54 out of 56) concluded that the treatment was well tolerated, apparently implying favourable safety. However, none of them actually presented tolerability in terms of a contrast between safety and tolerability. Conclusions: Tolerability is used frequently, albeit incorrectly, to refer to a drug's favourable safety profile. Focused evaluation of drug tolerability (i.e., the patient perspective of adverse drug reactions) should become routine. Presentation in regulatory documents, such as risk management plan summaries, product information and patient leaflets should be a continuation of the process of patient‐centred healthcare. [ABSTRACT FROM AUTHOR]

Background: Client-centred practice aims to involve the person in making decisions during the therapeutic intervention process, giving him or her a central and active role. Objectives: To analyze the effects of client-centred practice in occupational therapy on issues related to occupational performance and participation among people with stroke and traumatic brain injury. Material and methods: A systematic review of randomized clinical trials examining the effects of a client-centred practice carried out by occupational therapists in patients with stroke or traumatic brain injury aged over 18 years was conducted. PubMed, Web of Science, Scopus, OT Seeker, PsycINFO and EBSCO were used to retrieve potentially eligible publications. Results: Eight studies, from 294 identified, were included. The extracted data showed that the application of client-centred practice in occupational therapy improved satisfaction with occupational performance compared to conventional interventions. However, client-centred practice and conventional intervention had similar effects on functionality (Activities of Daily Living), life satisfaction and burden on caregivers. Conclusions and significance: Client-centred practice has the effect of achieving greater satisfaction with occupational performance. This suggests that client-centred practice in occupational therapy helps patients to accept the new limitations on their occupational performance. Further studies are needed to determine the effects of client-centred practice on other aspects. [ABSTRACT FROM AUTHOR]

Patient care has been the major focus of most healthcare discussions, as a way to reinforce strategies that ensure care is of benefit to patients. Understanding the interactions between the patient and radiographer unlocks various opportunities to deliver improved patient care. The purpose of this study was to assess the quality of care received by patients and determine its contributing factors as perceived by patients during the general X-ray examinations. The study used a quantitative, descriptive and cross-sectional survey design. Data were collected from 66 purposefully sampled participants, using a questionnaire. The quality of care for different phases of the radiographic procedures was analysed and the relationships between dependent and independent variables, as well as identified contributing factors, were measured using SPSS version 25. The quality of care rendered to patients in the radiography department before the commencement of the procedure, during the procedure and after the procedure was rated as good, by 77.3%, 81.8% and 68.2%, of the patients respectively. The overall quality of care received by the patients was rated as high, by 89.4% of the patients. Poor communication, overcrowded rooms, radiographers and receptionists' attitudes were factors highlighted by patients as affecting the quality of care they received. Most patients rated highly the quality of care rendered during radiographic procedures, with a few areas reported as negatively affecting this care. Continuous professional development on communication and patient-centred care for radiographers is recommended to improve and maintain the quality of care rendered to patients. [ABSTRACT FROM AUTHOR]

Objectives: Self-management of patients with advanced cancer is challenging. Although healthcare professionals may play a crucial role in supporting these patients, scant scientific attention has been paid to their perspectives. Therefore, we examined healthcare professionals' views on self-management and self-management support in this population.Methods: We conducted qualitative interviews with 27 purposively sampled medical specialists (n = 6), nurse specialists (n = 6), general practitioners (n = 8) and homecare/ hospice nurses (n = 7) in the Netherlands. Transcripts were analysed using thematic analysis.Results: Healthcare professionals experienced self-management of patients with advanced cancer to be diverse, dynamic and challenging. They adopted instructive, collaborative and advisory roles in self-management support for this population. Whereas some professionals preferred or inclined towards one role, others indicated to switch roles, depending on the situation.Conclusions: Just like patients with advanced cancer, healthcare professionals differ in their views and approaches regarding self-management and self-management support in this population. Therefore, instructive, collaborative and advisory self-management support roles will all be useful under certain circumstances.Practice Implications: Healthcare professionals can support self-management by being aware of their own views and communicating these clearly to their patients and colleagues. Education in self-management support should include self-reflection skills and discuss the relation between self-management and professional care. [ABSTRACT FROM AUTHOR]

Aim and objectives: To evaluate the effect of patient‐centred self‐management programme on mental health, self‐efficacy and self‐management of patients with hypertensive nephropathy. Background: If the symptoms of hypertension are not well‐controlled, deterioration of renal function will accelerate and evolve into hypertensive nephropathy. Design: A randomised single‐blind trial. This article follows the requirements of CONSORT statement. Methods: The experimental group (n = 35) after pre‐test used patient‐centred self‐management programme once a week for a total of 4 weeks and the intervention effect was measured after 3 months for post‐test. Contrarily, the traditional care was employed for the control group (n = 35). The measuring outcomes included mental health, self‐efficacy and self‐management. Trial registry is listed under https://clinicaltrials.gov/ with Identifier No. NCT04633993. Results: After the intervention, the average score of mental health for the experimental group was 20.79 (SD = 0.82) which was higher than the 19.27 points for the control group (SD = 0.77) and showed a significant difference (F = 8.31, p =.005, partial eta2 = 0.133). In terms of self‐efficacy, the average score for the experimental group was 214.13 (SD = 6.40), which was higher than the 189.58 points for the control group (SD = 6.03) and exhibited a significant difference (F = 11.82, p =.001, partial eta2 = 0.197). Regarding self‐management, the average score of the experimental group was 75.12 (SD = 2.29) which was significantly higher than the 68.80 points of the control group (SD = 2.43) (F = 11.17, p =.001, partial eta2 = 0.190). Conclusions: In addition to promoting mental health of individual cases, this intervention also increases their self‐confidence in disease control and improves their self‐management on diseases. Relevance to clinical practice: The intervention provides an effective option for clinical care workers as a replacement for or supplement to the traditional care. [ABSTRACT FROM AUTHOR]

Background: Myasthenia gravis (MG) is a chronic autoimmune neuromuscular disease, characterised by fluctuating muscle weakness which makes it challenging to assess symptom severity. Mixed methods psychometrics (MMP), which combines evidence from qualitative research and modern psychometrics, is a versatile approach to the development of patient-centred outcome measures (PCOM) in the context of rare disease. Our objective was to develop the MG Symptom patient-reported outcome (PRO) to assess key aspects of MG severity from the patient perspective.Methods: We used MMP to develop a novel PRO instrument in a multi-step process. An initial conceptual model for MG patient experience was developed and expanded based on preliminary literature review and two waves of concept elicitation interviews with people with MG (Step 1). Based on this, the novel PRO instrument, the MG Symptoms PRO, was drafted. The draft instrument was refined by combining qualitative and quantitative data collected in a Phase 2 clinical study (Step 2).Results: Findings from the literature review and concept elicitation interviews (n = 96) indicated that patient experience in MG includes proximal muscle weakness symptoms related to several body parts, along with muscle weakness fatigability and general fatigue. Then, a set of 42 items across five scales (ocular-, bulbar-, and respiratory muscle weakness, physical fatigue, and muscle weakness fatigability) was developed. Qualitative evidence endorsed its relevance, clarity, and ease of completion; quantitative analysis with Rasch measurement theory methods demonstrated strong measurement properties, including good targeting and high reliability. Classical test theory analyses showed adequate reliability of the instrument and mild to moderate correlations with other widely used MG-specific outcome measures.Conclusions: The MG Symptoms PRO has potential to be used both to measure treatment benefit in clinical trials and monitor symptom severity in clinical practice. Its component scales were purposefully designed to stand alone, enhancing interpretability of scores given the heterogeneity of MG, and enabling modular use. Compared with existing MG PROs, it contains more detailed assessments of muscle weakness and muscle weakness fatigability symptoms, which are of key importance to people with MG. The MMP approach used may serve as a case study for developing PCOMs across rare disease indications. [ABSTRACT FROM AUTHOR]

Abstract Background Community engagement is increasingly recognized as a valuable tool in clinical and translational research; however, the impact of engagement is not fully understood. No standard nomenclature yet exists to clearly define how research changes when community stakeholders are engaged across the research spectrum. This severely limits our ability to assess the value of community engagement in research. To address this gap, we developed a taxonomy for characterizing and classifying changes in research due to community engagement. Methods Using an iterative process, we (a) identified areas of potential impact associated with community engagement from author experience, (b) categorized these in taxonomic bins based on research stages, (c) conducted semi‐structured interviews with researchers and community stakeholders, (d) validated the codebook in a sample dataset and (e) refined the taxonomy based on the validation. Community stakeholders were involved in every step of the process including as members of the primary study team. Results The final taxonomy catalogues changes into eleven domains corresponding to research phases. Each domain includes 2‐4 dimensions depicting concepts within the domain's scope and, within each dimension, 2‐10 elements labelling activities through which community engagement could change research. Conclusions Community engagement has great potential to enhance clinical and translational research. This taxonomy provides a common vocabulary and framework for understanding the impact of community engagement and suggests metrics for assessing the value of community engagement in research.

Abstract Background Patient-centred communication and empathy are key enablers for patient-centred care. However, several studies suggest a downward trend regarding the empathic communication skills of physicians during medical residency. It is known that communication training can have a positive effect on patient-centred communication, empathy and relational skills. Training residents in patient-centred communication and empathy can be an opportunity to improve the patient-centred care. To evaluate the training a tri-focal perspective will be used. Methods A 3-day training was developed to improve residents’ patient-centred communication and empathy skills at an academic medical health centre, in the Netherlands. The training included: (1) the basics of patient-centred communication and empathy (through presentations, scientific literature), (2) practicing with actors, and (3) reflecting on residents’ video recorded consultations (by themselves and communication experts). A pilot study with a pre-post design was conducted to evaluate the training from patient and observer perspectives. Semi-structured interviews were used to get insight into residents’ perspective. Nine residents from different specialities followed the training and enrolled in the pilot study. During two random days consultations between residents and patients were video recorded. Patients were asked to fill in two questionnaires, indicating their perspective on residents’ empathy and communication skills before as well as after the consultation. All video recorded consultations were coded to rate residents’ communication skills, empathy, computer use and agenda-setting. Statistical analysis were performed using multilevel analysis. Results A total of 137 eligible patients took part in the pilot study. Trained residents showed significant improvement in patient-rated empathy scores. According to observers, residents’ computer use improved significantly after the training. The communication skills of trained residents did not improve significantly. Agenda setting by residents showed a downward trend. Almost all residents were satisfied with the training, especially with the video-feedback. Conclusions A brief training significantly increased residents’ empathy scores according to patients and significantly decreased residents’ computer use according to observers. These findings indicate that the quality of patient-centred care can be improved by integrating patient-centred communication into residency programs, at an academic medical health centre. The ultimate goal is to structurally embed the training in residents’ education program.

Background Eating and drinking problems are common among people living with later-stage dementia, yet few studies have explored their perspectives. Objective This study aimed to explore how people living with mild dementia understand possible future eating and drinking problems and their perspectives on assistance. Design Qualitative study using semi-structured interviews. Setting Community. Methods We conducted semi-structured interviews with 19 people living with mild dementia. Interviews were transcribed verbatim and analysed thematically. Results Five themes were identified: (i) awareness of eating and drinking problems; (ii) food and drink representing an individual's identity and agency; (iii) delegating later decisions about eating and drinking to family carers; (iv) acceptability of eating and drinking options; and (v) eating and drinking towards the end of life. For people living with mild dementia, possible later eating and drinking problems could feel irrelevant and action may be postponed until they occur. Fears of being a burden to family and of being treated like a child may explain reluctance to discuss such future problems. People living with mild dementia might wish to preserve their agency and maintain good quality of life, rather than be kept alive at later stages by artificial nutrition and hydration. Conclusion For people with mild dementia, eating and drinking problems may seem unrelated to them and so get left undiscussed. Negative connotations regarding eating and drinking problems may hinder the discussion. The optimal time to discuss possible future problems with eating and drinking with people with mild dementia may need an individual approach. [ABSTRACT FROM AUTHOR]

Supportive care may have significant input into the treatment of patients with heart failure (HF). Support, understanding and being treated as a whole and unique person are vital for patients with HF. In order to develop a person-centred program, it is important to know patients' needs from their perspectives. The aim of the current review and meta-synthesis was to explore the needs of patients with HF from their perspective. A qualitative review was conducted using the keywords: ("needs" OR "need") AND ("heart failure") AND ("qualitative") in four databases. Pre-defined inclusion and exclusion criteria were set. The 'Consolidated criteria for reporting qualitative studies' item checklist was used to assess the research methodologies of the included studies. A "thematic synthesis" methodological approach was used: (1) Line by line coding of the findings from primary studies. (2) The resulting codes were organized into related areas thus building descriptive themes. (3) Analytical themes were developed. Eleven articles were included in the present review. The results from the meta-synthesis extracted five different categories covering patents' needs: Self-management, palliative care, supportive care, social support and continuing person-centred care. The need for continuing empowerment and support to meet those needs was also identified, revealing the core theme: 'Wind beneath my wings'. The meta-synthesis quotations highlighted the necessity for dynamic and interactive continuing person-centred care focusing on the ongoing patients' needs through the HF trajectory. Giving more emphasis to the human dimension and holistic approach of patients with HF, along with cardiology medicine development might be a key factor in improving clinical outcomes and health related quality of life. [ABSTRACT FROM AUTHOR]

Objective: There have been few descriptions of how outpatient cancer care is provided to patients from culturally and linguistically diverse (CALD) communities. As populations who experience disparities in cancer care access and outcomes, deeper understanding is needed to help identify those factors which can shape the receipt of multidisciplinary care in ambulatory settings. This paper reports on data collected and analysed as part of a multicentre characterisation of care in Australian public hospital cancer outpatient clinics (OPCs). Results: Analysis of data from our ethnographic study of four OPCs identified three themes: "Identifying CALD patient language-related needs"; "Capacity and resources to meet CALD patient needs", and "Making it work for CALD communities." The care team comprises not only clinicians but also families and non-clinical staff; OPCs serve as "touchpoints" facilitating access to a range of therapeutic services. The findings highlight the potential challenges oncology professionals negotiate in providing care to CALD communities and the ways in which clinicians adapt their practices, formulate strategies and use available resources to support care delivery. [ABSTRACT FROM AUTHOR]

This article discusses the important concept of person-centred care and how this can be achieved. Following an introduction defining what is meant by this term and contrasting it with the term patient-centred care, the relevant and pertinent parts of the Nursing and Midwifery Council code will then be identified and discussed.The four principles of person-centred care will then be presented. The role of the support worker and nursing associate will be made clear in how the wishes and needs of patients can be gained. Self-awareness, emotional intelligence and communication will be discussed in relation to this.Finally, two potential barriers to the successful achievement of person-centred care will be identified. [ABSTRACT FROM AUTHOR]

Objectives: While current antiretroviral and care strategies can effectively suppress HIV, achieving optimal quality of life (QoL) requires a wider consideration of clients' well‐being, the complexity of individuals' lives and social determinants of health. The objective of this commentary was to develop a definition of client‐led care in the Australian context and its key supporting principles for people living with HIV (PLHIV). Methods: The authors used two sources of evidence to support their HIV community experience with client‐led care: (1) a scoping review of the literature, and (2) consultations with colleagues who were PLHIV advocates or HIV specialist physicians. The findings from the scoping review and consultations were summarised and the key principles of client‐led care compared with those identified by the authors. Results: Seven articles met the inclusion criteria for qualitative analysis in the scoping review. Five PLHIV advocates and three HIV specialist physicians were consulted. Key principles supporting client‐led care identified by the authors based on their experience centred around the themes of: (1) clients and healthcare providers working in partnership, (2) information and communication, (3) coordinating access to care, (4) building trust, and (5) respect for client's needs and preferences. The principles identified by the authors were supported by those of the scoping review and colleague consultations. Conclusions: A client‐led approach can complement conventional HIV care strategies and enable empowerment and greater engagement with care, potentially improving the care continuum and overall QoL for individuals living with HIV who can, and want to, lead their own care. [ABSTRACT FROM AUTHOR]

Background: Given the prevalence of long-term benzodiazepine (BZD) prescribing, increased monitoring through the implementation of prescription monitoring programmes (PMPs) may be the necessary impetus to promote BZD deprescribing. Despite evidence promoting the importance of patient-centred care, GPs have not been sufficiently supported to implement these principles through current deprescribing practice.Aim: To investigate patients' perception of their prescriber's influence on ceasing BZD use, including their willingness to take their advice, and to understand how a patient's stage of change influences the barriers and facilitators they perceive to discontinuing BZDs.Design and Setting: An online survey and qualitative interviews with 22 long-term users of BZD (≥6 months), aged 18-69 years, recruited from the general population in Victoria, Australia.Method: Two groups of users of BZD participated, one in the process of reducing their BZD and one not reducing, and were categorised according to their stage of change. Data underwent thematic analysis to identify barriers and facilitators to reducing BZDs both at the patient level and the prescriber level.Results: BZD patients' perceptions of the prescriber influence were characterised by prescribing behaviours, treatment approach, and attitude. Barriers and facilitators to reducing their BZD were mapped against their stage of change. Irrespective of their stage of change, participants reported they would be willing to try reducing their BZD if they trusted their prescriber.Conclusion: This study illustrates that, with a few key strategies at each step of the deprescribing conversation, GPs are well positioned to tackle the issue of long-term BZD use in a manner that is patient centred. [ABSTRACT FROM AUTHOR]

Intensive care nursing is prone to episodic anxiety linked to patients' immediate needs for treatment. Balancing biomedical interventions with compassionate patient‐centred nursing can be particularly anxiety provoking. These patterns of anxiety may impact compassion and patient‐centred nursing. The aim of this paper is to discuss the application of Bowen Family Systems Theory to intensive care nursing, mapping a framework to support critical care nurses' well‐being and, consequently, the quality of care they provide. This article is founded on research, theoretical papers and texts focused on Bowen Family Systems Theory (BFST), and findings from a constructivist study on patient‐centred nursing and compassion in the intensive care unit. The goal of Bowen Family Systems Theory is to empower individuals, decreasing blame and reactivity. Bowen Family Systems Theory can be applied to the sometimes intimate relationships that develop in this environment, aiding understanding of nurses' experience of compassion satisfaction and fatigue. Where organizational factors and management styles fall short in supporting critical care nurses to meet expectations, BFST can offer a perspective on the processes that occur within the intensive care unit, impacting nurse well‐being and quality of care. This paper makes plain the importance of understanding the anxiety that occurs within the intensive care unit as a system, so that individuals, such as critical care nurses, can be supported appropriately to ensure nurse well‐being and quality care. [ABSTRACT FROM AUTHOR]

Introduction: A Norwegian-Danish research team identified a gap in research regarding how surgical patients felt about their post-operative care needs being met in hospitals. A study was subsequently developed to understand their subjective assessments of how they value the perceived fulfilment of their actual care needs. The study was further informed by international calls to focus on the fundamentals of care practice. Our aim was to determine the extent to which surgical patients receiving elective treatment experience the physical environment, atmosphere and collaboration with staff as supportive of their care and treatment, and what this means for them after treatment. In addition, we aimed to document the extent to which patients experienced being understood and having influence in their care., Methods: A descriptive observation study using a cross-sectional design. The validated Perioperative User Participation Perspectives (POUP) questionnaire was completed on the day of discharge by 194 adult (male and female) patients (mean age: 56 years) who had undergone elective surgery on gynaecological, internal medicine or orthopaedic wards. Agreement between the subjective importance of nursing care for patients and the perceived reality was determined., Results: Agreement regarding the physical environment, a clean bed and clean surroundings was between 91.7 and 96.2%, and agreement with regard to a good relational atmosphere with staff it was 94.2 to 96.7%. In terms of the relational aspects of care, being understood and having influence the agreement was calculated to be 89.4 to 94.4%. However, 42.6% of the patients reported they were involved in drawing up a care plan. For those patients who valued collaborating in their care planning the congruency was 80%., Conclusion: A conducive atmosphere and a keen eye for the patients' wishes and needs is of particular importance at the time of discharge after elective surgery., (Copyright © 2024. Published by Elsevier GmbH.)

Objective: Prior research has not assessed the value of remote patient monitoring (RPM) systems for patients undergoing anticoagulation therapy after cardiac surgery. This study aims to assess whether the clinical follow-up through RPM yields comparable outcomes with the standard protocol., Methods: A crossover trial assigned participants to SOC-RPM or RPM-SOC, starting with the standard of care (SOC) for the first 6 months after surgery and using RPM for the following 6 months, or vice-versa, respectively. During RPM, patients used the Coaguchek © to accurately measure International Normalized Ratio values and a mobile text-based chatbot to report PROs and adjust the therapeutic dosage. The study assessed patients' and clinicians' experience with RPM and compared direct costs., Results: Twenty-seven patients participated. The median time in therapeutic range (TTR) levels during RPM were 72.2% and 50.6% for the SOC-RPM and RPM-SOC arms, respectively, and during SOC, they were 49.4% and 58.4% for SOC-RPM and RPM-SOC arms, respectively. Patients and the clinical team reported high trust and satisfaction with the proposed digital service. Statistically significant differences were only found in the cost of RPM in the RPM-SOC, which was higher than SOC in the SOC-RPM arm., Conclusions: Portable coagulometers and chatbots can enhance the remote management of patients undergoing anticoagulation therapy, improving patient experience. This presents a promising alternative to the current standard procedure. The results of this study seem to suggest that RPM may have a higher value when initiated after a SOC period rather than starting RPM immediately after surgery. Trial registration: ClinicalTrials.gov NCT06423521., 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) 2024.)