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Abstract Background Patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) are becoming essential parts of a learning health system, and using these measures is a promising approach for value-based healthcare. However, evidence regarding healthcare professional and patient organizations’ knowledge, use and perception of PROMs and PREMs is lacking. Objectives The objectives of the study were to: 1- Describe the current knowledge and use of PROMs and PREMs by healthcare professional and patient organizations, 2- Describe the determinants of PROMs and PREMs implementation according to healthcare professional and patient organizations. Methods We conducted an environmental scan using semi-structured interviews with representatives from healthcare professional and patient organizations. Interviews were recorded and live coded based on the Franklin framework. We used inductive and deductive thematic analysis to extract information about the main themes addressed during the interview (awareness of PROMs and PREMs, examples of implementation and use of PROMs and PREMs, tools used, vision for future implementation, barriers and facilitators to implementation and the best way to collect PROMs and PREMs data). Results 63% of healthcare professional organizations (n = 19) and 41% of patient organizations (n = 9) that were contacted agreed to have a representative interviewed. The representatives from both the healthcare professional and patient organizations acknowledged the importance of assessing patients’ experience and outcomes. However, they considered the implementation of PROMs and PREMs tools to be scarce within their organizations, in clinical practice and in the education system. Patient organizations were worried that overuse of PROMs and PREMs could lead to depersonalization of practice. Barriers to implementing PROMs and PREMs included lack of awareness of tools, resistance to change and lack of motivation to complete or explain the questionnaire. Barriers also included factors such as lack of financial, technological and human resources and issues with integration of data and inconsistency of digital platforms. Conclusions This environmental scan revealed a lack of awareness of tools by healthcare professional and patient organizations’ representatives and limited implementation. Adequate training, technological integration, and demonstration of PROMs and PREMs benefits to foster broader adoption in clinical and organizational settings is dearly needed. Addressing these challenges is essential for enhancing value-based care.

Simple Summary: Although the acute phase of cancer treatment has ended, many survivors continue to experience lingering effects that can negatively impact their quality of life for up to 25 years after diagnosis. Approximately three quarters of these individuals encounter long-term sequelae. We investigated the experience of Swiss cancer survivors regarding health-related information and healthcare system. The Swiss healthcare system remains inadequately prepared to support cancer survivors. The current landscape of supportive care is fragmented and lacks a cohesive strategy for systematic needs assessment and tailored care plans. Gaining insights into the experiences and needs of cancer survivors in Switzerland is crucial for the development of comprehensive survivorship guidelines, which are currently lacking. Such guidelines would enhance service integration and promote a holistic approach to cancer care, ensuring that all survivors receive the necessary ongoing support throughout their recovery journey. Background/Objectives: In recent years, the number of cancer survivors has rapidly increased in Switzerland, as well as worldwide. As cancer increasingly becomes a chronic condition, numerous bio-psycho-social and spiritual challenges emerge, leading to significant needs for this population. The aims of this study were to determine the experiences of Swiss cancer survivors with two domains, i.e., health-related information and healthcare systems, and their risk factors, and to see whether these experiences align with the needs identified in the literature. Methods: Data from the cross-sectional multicentred survey Swiss Cancer Patient Experiences were analysed. A total of 1870 adult Swiss cancer survivors were included in the analysis. For each domain, an overall score ranging between 0 (poor experience) and 10 (excellent experience) was constructed including 11 and 10 questions, respectively. The questions that highlighted non-positive experiences by patients were grouped to calculate so-called "problematic" scores for each domain; linear and logistic regressions were conducted to identify the variables influencing these problematic scores needs. Results: The mean overall and "problematic" scores were 7.5 (SD 2.6) and 6.8 (SD 3.2), respectively, for health-related information, and 8.0 (SD 2.4) and 7.0 (SD 3.6), respectively, for the healthcare system. Four variables were found to be associated with the problematic scores: geographical location, foregoing care, self-assessed health, and level of health literacy. Conclusions: Swiss cancer survivors reported problematic experiences in the domains of information and healthcare systems which could lead to unmet needs. The systematic assessment of these needs is recommended to improve patients' experiences and provide more effective and supportive follow-up care. [ABSTRACT FROM AUTHOR]

Simple Summary: This study emphasizes the crucial role of effective communication to improve patients' understanding and satisfaction during biopsy procedures. It highlights the importance of managing patient anxiety and fear, which can directly impact pain experiences. The study also identifies areas where real-time pain management can be enhanced and underscores the need for clear and accurate patient education to address concerns after the procedure. Background/Objectives: This study evaluates the effectiveness of communication strategies and pain management protocols to enhance patients' experiences during sarcoma core biopsies. Recognizing the complexity and anxiety associated with sarcoma diagnoses, this research aims to assess the utility of the Invasive Procedure Assessment (IPA) tool, focusing on its ability to identify areas for improvement through Patient-Reported Outcome Measures (PROMs) and Patient-Reported Experience Measures (PREMs). Methods: Conducted at two Integrated Practice Units (IPUs) within the Swiss Sarcoma Network, this study involved 282 consecutive patients who underwent core biopsies. One week post-procedure, patients completed the IPA questionnaire, which included PROMs and PREMs. Statistical analyses explored correlations between physician communication, patient understanding, anxiety, pain, and overall satisfaction. Results: The IPA tool effectively captured patient perspectives on sarcoma core biopsies. A significant positive correlation (rho = 0.619, p < 0.0001) was found between effective physician communication and patient understanding, which was associated with reduced anxiety and pain. Higher anxiety levels strongly correlated with increased pain perception (rho = 0.653, p < 0.0001), emphasizing the need for anxiety management. Patients with malignant tumors reported lower overall satisfaction compared to those with benign tumors (p = 0.0003), highlighting the need for tailored communication and pain management strategies. The data also suggested that clear communication might mitigate overly negative subjective impressions, such as concerns about wound complications. Conclusions: Effective communication and anxiety management are essential for improving patient satisfaction during sarcoma core biopsies. The study emphasizes the need for personalized care strategies tailored to tumor characteristics and patient demographics. Future research should validate these findings in diverse healthcare settings and explore the broader application of the IPA tool across different cultural and demographic contexts. [ABSTRACT FROM AUTHOR]

Background: Patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) are becoming essential parts of a learning health system, and using these measures is a promising approach for value-based healthcare. However, evidence regarding healthcare professional and patient organizations' knowledge, use and perception of PROMs and PREMs is lacking. Objectives: The objectives of the study were to: 1- Describe the current knowledge and use of PROMs and PREMs by healthcare professional and patient organizations, 2- Describe the determinants of PROMs and PREMs implementation according to healthcare professional and patient organizations. Methods: We conducted an environmental scan using semi-structured interviews with representatives from healthcare professional and patient organizations. Interviews were recorded and live coded based on the Franklin framework. We used inductive and deductive thematic analysis to extract information about the main themes addressed during the interview (awareness of PROMs and PREMs, examples of implementation and use of PROMs and PREMs, tools used, vision for future implementation, barriers and facilitators to implementation and the best way to collect PROMs and PREMs data). Results: 63% of healthcare professional organizations (n = 19) and 41% of patient organizations (n = 9) that were contacted agreed to have a representative interviewed. The representatives from both the healthcare professional and patient organizations acknowledged the importance of assessing patients' experience and outcomes. However, they considered the implementation of PROMs and PREMs tools to be scarce within their organizations, in clinical practice and in the education system. Patient organizations were worried that overuse of PROMs and PREMs could lead to depersonalization of practice. Barriers to implementing PROMs and PREMs included lack of awareness of tools, resistance to change and lack of motivation to complete or explain the questionnaire. Barriers also included factors such as lack of financial, technological and human resources and issues with integration of data and inconsistency of digital platforms. Conclusions: This environmental scan revealed a lack of awareness of tools by healthcare professional and patient organizations' representatives and limited implementation. Adequate training, technological integration, and demonstration of PROMs and PREMs benefits to foster broader adoption in clinical and organizational settings is dearly needed. Addressing these challenges is essential for enhancing value-based care. [ABSTRACT FROM AUTHOR]

Abstract Background Improving palliative care for inpatients is urgently needed. Data from patient-reported experience measures (PREM) can assist in identifying areas for focused improvement. This study aimed to describe patient reported experience of care in inpatients with palliative care needs, to inform a baseline understanding of care experience and identify key areas for improvement. Methods Cross-sectional study design where inpatients with palliative care needs were invited to complete ‘consideRATE,’ a patient reported experience measure of care, over six months in 2022. Inpatients with palliative care needs receiving care on an oncology, general medicine/renal and general medicine/respiratory ward (n = 3) at an Australian metropolitan hospital were screened for eligibility. Carers could provide proxy responses where inpatients were unable to participate. Descriptive statistics were used to analyse quantitative ratings, whilst free text responses were analysed using integrated thematic analysis. Results One-hundred and twenty participants (108 patients and 12 carers) completed consideRATE. The questions with the highest number of ‘very good’ responses were attention to symptoms, attention to feelings and attention to what matters most; the questions with the lowest number of ‘very good’ responses was attention to patients’ affairs, what to expect, and the environment of care. Almost half (n = 57, 48%) indicated that attention to patients’ affairs ‘did not apply’ to their inpatient stay. Analysis of 532 free text responses across 8 questions highlighted the importance of feeling supported, feeling informed, feeling heard and navigating the clinical environment. Conclusion Enabling inpatients with palliative care needs to provide feedback about their experience of care is one method of ensuring improvements matter to patients. Supporting clinical teams to understand and use these data to make tailored improvements is the next step in this multi-phase research.

Objective: The effectiveness of out of hospital lifestyle interventions in healthcare is likely co-dependent on social support from involved one's. We sought to investigate the interrelationships between patient-partner Co-responsibility, Spousal Support, and Self-efficacy and the mechanisms through which they contribute to health behaviors and outcomes relevant to weight loss and maintenance. Methods: Co-responsibility, Spousal Support, self-efficacy, health outcomes and health behaviors like total weight loss, physical activity, OBESI-Q, and health satisfaction were assessed through a questionnaire among 868 individuals attempting to lose weight. Full and semi-partial correlations were used to understand the association between Co-responsibility, Spousal Support, Self-efficacy and health outcomes and behaviors. Results: Results showed that increased Co-responsibility was associated with improved health outcomes and that it extended the construct of Spousal Support. The underlying pathway of associations between Co-responsibility and health outcomes was found to be through Self-efficacy. Finally, it was revealed that increased Co-responsibility caused an improvement in Self-efficacy. Conclusion: Understanding Co-responsibility among patients and their involved one's could provide valuable information to health care professionals to tailor care trajectories and achieve better patient health outcomes.

Introduction: Total body irradiation (TBI) is part of the myeloablative conditioning for hematopoietic stem cell transplantation (HSCT) in malignant hematologic disorders. This therapy has recently shown improved survival in acute lymphoblastic leukemia (ALL) compared to chemotherapy-based regimens. However, side effects are a significant limitation, especially in the pediatric population. Patients and methods: We retrospectively analyzed the survival of patients with ALL who underwent an HSCT at a tertiary hospital between 1996 and 2009 (N = 69 HSCT in 57 patients). We differentiated a cohort that received TBI (N = 44) from another that did not (N = 25). Subsequently, we interviewed the survivors from the TBI group with a minimum of 10 years of follow-up (N = 18), asking about the presence of side effects. Results: The overall survival (OS) at 2 and 5 years was 79.1% and 65.2% respectively for the TBI group and 66.2% and 55.8% for the non-TBI group, although this difference was not significant (P=.31). The event-free survival (EFS) at 2 and 5 years was 77.3% and 63.6% respectively for the TBI group and 56% and 32% for the non-TBI group (P=.02). The probability of relapse (PR) at 2 years for those who received TBI was 10% compared to 28.6% for those who did not receive TBI (P=.005). Survivors who received TBI developed secondary neoplasms (39%), dyslipidemia (67%), cognitive impairments affecting memory (44%), recurrent respiratory infections (39%), thyroid abnormalities (45%), premature ovarian failure (89%), cataracts (22%), and psychological problems (44%). However, the quality of life, as self-assessed by the patients, was considered good for 83% of the participants.. Conclusions: Patients who received TBI had significantly higher EFS and lower PR. However, adverse effects are frequent and significant, although they do not subjectively affect quality of life. Resumen: Introducción: La irradiación corporal total (ICT) forma parte del acondicionamiento mieloablativo del trasplante de progenitores hematopoyéticos (TPH) en hemopatías malignas. Esta terapia ha demostrado recientemente mayor supervivencia en leucemia linfoblástica aguda (LLA) frente a regímenes basados en quimioterapia. Sin embargo, los efectos secundarios son una limitación importante, especialmente en la población pediátrica. Pacientes y métodos: Analizamos retrospectivamente la supervivencia de pacientes con LLA que recibieron un TPH en un hospital terciario entre 1996 a 2009 (N = 69 TPH en 57 pacientes). Diferenciamos una cohorte que había recibido ICT (N = 44) y otra que no (N = 25). Posteriormente entrevistamos a los supervivientes del grupo ICT con un mínimo de 10 años de seguimiento (N = 18), preguntando acerca de la presencia de efectos secundarios. Resultados: La supervivencia global (SG) a los 2 y 5 años fue del 79.1% y 65.2% respectivamente para el grupo ICT y del 66.2% y 55.8% para el grupo no ICT, aunque esta diferencia no fue significativa (p = 0.31). La supervivencia libre de evento (SLE), a los 2 y 5 años fue del 77.3% y 63.6% respectivamente para el grupo ICT y del 56% y 32% para el grupo no ICT (p = 0.02). La probabilidad de recidiva (PR) a los 2 años habiendo recibido ICT fue del 10% y sin haber recibido ICT del 28.6% (p = 0.005). Los supervivientes que recibieron ICT desarrollaron neoplasias secundarias (39%), dislipemia (67%), alteraciones cognitivas (44%), infecciones respiratorias de repetición (39%), alteraciones tiroideas (45%), insuficiencia ovárica precoz (89%), cataratas (22%) y problemas psicológicos (44%), aunque la calidad de vida, valorada por ellos mismos, fue considerada como buena para el 83% de los encuestados. Conclusiones: Los pacientes que recibieron ICT tuvieron significativamente mayor SLE y menor PR. Sin embargo, los efectos adversos son frecuentes e importantes, aunque no afectan subjetivamente a la calidad de vida.

Objective: This study aimed to use the Person-Centered Coordinated Care Experience Questionnaire (P3CEQ) to assess the experience of person-centered coordinated care among people with long-term conditions in the Balearic Islands, Spain. Methods: Over 1300 participants receiving treatment for chronic conditions or HIV pre-exposure prophylaxis were invited to complete the P3CEQ and a socio-demographic questionnaire, both administered electronically via the Naveta app. The P3CEQ assesses the key domains of the P3C through an 11-item questionnaire. Items 1, 2, 3, 4, 5, 8, 9 and 10 assess specifically person-centredness (PC subscale), while items 5, 6, 7, 8 and 9 measure care coordination (CC subscale; question 7 includes 4 sub-questions to specifically assess care plans). Descriptive statistics were used to summarize patient characteristics and P3CEQ items scores. Data analysis included chi-squared test of independence, Student's t -test and analysis of variance test. Pairwise comparisons were adjusted by Bonferroni correction. Results: The P3CEQ and a socio-demographic questionnaire were sent to 1313 individuals (651 men, 657 women, 5 'other gender'). A response rate of 35.34% was achieved, with 464 P3CEQ responders (223 men and 241 women). Significant differences in response rates were observed by age, smoking status, alcohol consumption, membership of patient organizations, and use of alternative medicine. Care planning was rated significantly lower than other measured domains. Women experienced less person-centered care than men (16.64 vs 17.91) and rated care coordination worse than their male counterparts (9.18 vs 10.23). There were also differences in scores between medical condition types, with cancer and inflammatory bowel disease patients rating highest for both person-centered care (21.20 and 19.13, respectively) and care coordination (10.70 vs 10.88, respectively). Patients with skin and rheumatic diseases rated lowest their experience of person-centered care. People with higher education and those employed or studying experienced better person-centeredness. Conclusion: Using the P3CEQ, we detected significant differences in the care experiences of people with chronic conditions, suggesting the need to address potential gender biases, social inequalities, and the poorer ratings observed for certain conditions in the study population. [ABSTRACT FROM AUTHOR]

BackgroundThe spreading adoption of value-based models of healthcare delivery has incentivized the use of patient-reported outcomes and experience measures (PROMs and PREMs) in clinical practice, with the potential to enrich the decision-making process with patient-reported data.MethodsThis perspective article explores PROs and the shared decision-making (SDM) process as components of value-based healthcare. We describe the potential of PROMs and PREMs within the decision-making process and present a digital framework for informing the shared decision-making process using aggregated data from a healthcare system PROMs and PREMs program, including early results from implementation in hospital network in Madrid, Spain.ResultsThe proposed digital framework incorporates aggregated data from a hospital network PROMs and PREMs program as part of a digital patient decision aid (PDA) for patients with lymphoma. After the first hematologist appointment, participating patients access the PDA to review relevant information about clinical and patient-reported outcomes for each of the possible options, assign a personal order of priority to different outcomes, and then select their preferred course of action. Patients’ answers are automatically uploaded to the EHR and discussed with hematologists at the next appointment. After beginning treatment, patients are invited to participate in the network PROMs program; participants’ PROMs data are fed back into the PDA, thus “closing the circle” between the decision-making process and patient-reported data collection.During the first 14 months after launching the decision aid in October 2022, of 25 patients diagnosed with follicular lymphoma at the four participating hospitals, 13 patients decided to participate. No significant differences in age or sex were observed between groups. Average SDM Q-9 score for patients filling in the questionnaire (n = 6) was 36.15 of 45 points.ConclusionVarious obstacles toward widespread implementation of SDM exist such as time constraints, lack of motivation, and resistance to change. Support and active engagement from policy makers and healthcare managers is key to overcome hurdles for capturing patient-reported data and carrying out shared decision-making at healthcare system level. Early results of a digital framework for PRO-enriched SDM seem to be beneficial to the decision-making process.

Abstract Background Patient-reported outcome and experience measures (PROMs and PREMs, respectively) are evidence-based, standardized questionnaires that can be used to capture patients’ perspectives of their health and health care. While substantial investments have been made in the implementation of PROMs and PREMs, their use remains fragmented and limited in many settings. Analysis of multi-level barriers and enablers to the implementation of PROMs and PREMs has been hampered by the lack of use of state-of-the-art implementation science frameworks. This umbrella review aims to consolidate available evidence from existing quantitative, qualitative, and mixed-methods systematic and scoping reviews covering factors that influence the implementation of PROMs and PREMs in healthcare settings. Methods An umbrella review of systematic and scoping reviews will be conducted following the guidelines of the Joanna Briggs Institute (JBI). Qualitative, quantitative, and mixed methods reviews of studies focusing on the implementation of PROMs and/or PREMs in all healthcare settings will be considered for inclusion. Eight bibliographical databases will be searched. All review steps will be conducted by two reviewers independently. Included reviews will be appraised and data will be extracted in four steps: (1) assessing the methodological quality of reviews using the JBI Critical Appraisal Checklist; (2) extracting data from included reviews; (3) theory-based coding of barriers and enablers using the Consolidated Framework for Implementation Research (CFIR) 2.0; and (4) identifying the barriers and enablers best supported by reviews using the Grading of Recommendations Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative research (GRADE-CERQual) approach. Findings will be presented in diagrammatic and tabular forms in a manner that aligns with the objective and scope of this umbrella review, along with a narrative summary. Discussion This umbrella review of quantitative, qualitative, and mixed-methods systematic and scoping reviews will inform policymakers, researchers, managers, and clinicians regarding which factors hamper or enable the adoption and sustained use of PROMs and PREMs in healthcare settings, and the level of confidence in the evidence supporting these factors. Findings will orient the selection and adaptation of implementation strategies tailored to the factors identified. Systematic review registration PROSPERO CRD42023421845.

Die laufenden Gesetzgebungsverfahren im Bereich Gesundheit dürften nach dem Aus der Ampel-Regierung nicht ganz so einfach beendet werden, wie sich das Gesundheitsminister Prof. Dr. Karl Lauterbach vorgestellt hat. Das betrifft sowohl das Gesundheitsversorgungsstärkungsgesetz, die Reform der Notfallversorgung, das Gesundheits-Digital-agentur-Gesetz, das Pflegekompetenzgesetz, ein für diesen Herbst angekündigtes Bürokratieentlastungsgesetz und das Gesundes-Herz-Gesetz.

Abstract Background Case-mix adjustment of patient reported experiences (PREMs) and outcomes (PROMs) of care are meant to enable fair comparison between units (e.g. care providers or countries) and to show where improvement is possible. It is important to distinguish between fair comparison and improvement potential, as case-mix adjustment may mask improvement potential. Case-mix adjustment takes into account the effect of patient characteristics that are related to the PREMs and PROMs studied, but are outside the sphere of influence of the units being compared. We developed an approach to assess which patient characteristics would qualify as case-mix adjusters, using data from an international primary care study. Results We used multilevel analysis, with patients nested in general practices nested in countries. Case-mix adjustment is indicated under the following conditions: there is a main effect of the potential case-mix adjuster on the PREM/PROM; this effect does not vary between units; and the distribution of the potential case-mix adjuster differs between units. Random slope models were used to assess whether the impact of a potential case-mix adjuster varied between units. To assess whether a slope variance is big enough to decide that case-mix adjustment is not indicated, we compared the variances in the categories of a potential case-mix adjuster. Significance of the slope variance is not enough, because small variances may be significantly different from zero when numbers are large. We therefore need an additional criterion to consider a slope variance as important. Borrowing from the idea of a minimum clinically important difference (MCID) we proposed a difference between the variances of 0.25*variance (equivalent to a medium effect size). We applied this approach to data from the QUALICOPC (Quality and costs of primary care in Europe) study. Conclusions Our approach provides guidance to decide whether or not patient characteristics should be considered as case-mix adjusters. The criterion of a difference between variances of 0.25*variance works well for continuous PREMs and PROMs, but seems to be too strict for binary PREMs and PROMs. Without additional information, it is not possible to decide whether important slope variation is the result of either differences in performance between general practices or countries, or cultural differences.

Background: Patient-reported outcome and experience measures (PROMs and PREMs, respectively) are evidence-based, standardized questionnaires that can be used to capture patients' perspectives of their health and health care. While substantial investments have been made in the implementation of PROMs and PREMs, their use remains fragmented and limited in many settings. Analysis of multi-level barriers and enablers to the implementation of PROMs and PREMs has been hampered by the lack of use of state-of-the-art implementation science frameworks. This umbrella review aims to consolidate available evidence from existing quantitative, qualitative, and mixed-methods systematic and scoping reviews covering factors that influence the implementation of PROMs and PREMs in healthcare settings. Methods: An umbrella review of systematic and scoping reviews will be conducted following the guidelines of the Joanna Briggs Institute (JBI). Qualitative, quantitative, and mixed methods reviews of studies focusing on the implementation of PROMs and/or PREMs in all healthcare settings will be considered for inclusion. Eight bibliographical databases will be searched. All review steps will be conducted by two reviewers independently. Included reviews will be appraised and data will be extracted in four steps: (1) assessing the methodological quality of reviews using the JBI Critical Appraisal Checklist; (2) extracting data from included reviews; (3) theory-based coding of barriers and enablers using the Consolidated Framework for Implementation Research (CFIR) 2.0; and (4) identifying the barriers and enablers best supported by reviews using the Grading of Recommendations Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative research (GRADE-CERQual) approach. Findings will be presented in diagrammatic and tabular forms in a manner that aligns with the objective and scope of this umbrella review, along with a narrative summary. Discussion: This umbrella review of quantitative, qualitative, and mixed-methods systematic and scoping reviews will inform policymakers, researchers, managers, and clinicians regarding which factors hamper or enable the adoption and sustained use of PROMs and PREMs in healthcare settings, and the level of confidence in the evidence supporting these factors. Findings will orient the selection and adaptation of implementation strategies tailored to the factors identified. Systematic review registration: PROSPERO CRD42023421845. [ABSTRACT FROM AUTHOR]

Background: Several systematic reviews (SRs) assessing the use of telemedicine for musculoskeletal conditions have been published in recent years. However, the landscape of evidence on multiple clinical outcomes remains unclear. Objective: We aimed to summarize the available evidence from SRs on telemedicine for musculoskeletal disorders. Methods: We conducted an umbrella review of SRs with and without meta-analysis by searching PubMed and EMBASE up to July 25, 2022, for SRs of randomized controlled trials assessing telemedicine. We collected any kind of patient-reported outcome measures (PROMs), patient-reported experience measures (PREMs), and objective measures, including direct and indirect costs. We assessed the methodological quality with the AMSTAR 2 tool (A Measurement Tool to Assess systematic Reviews 2). Findings were reported qualitatively. Results: Overall, 35 SRs published between 2015 and 2022 were included. Most reviews (n=24, 69%) were rated as critically low quality by AMSTAR 2. The majority of reviews assessed "telerehabilitation" (n=29) in patients with osteoarthritis (n=13) using PROMs (n=142 outcomes mapped with n=60 meta-analyses). A substantive body of evidence from meta-analyses found telemedicine to be beneficial or equal in terms of PROMs compared to conventional care (n=57 meta-analyses). Meta-analyses showed no differences between groups in PREMs (n=4), while objectives measures (ie, "physical function") were mainly in favor of telemedicine or showed no difference (9/13). All SRs showed notably lower costs for telemedicine compared to in-person visits. Conclusions: Telemedicine can provide more accessible health care with noninferior results for various clinical outcomes in comparison with conventional care. The assessment of telemedicine is largely represented by PROMs, with some gaps for PREMs, objective measures, and costs. Trial Registration: PROSPERO CRD42022347366; https://osf.io/pxedm/ [ABSTRACT FROM AUTHOR]

Background: Case-mix adjustment of patient reported experiences (PREMs) and outcomes (PROMs) of care are meant to enable fair comparison between units (e.g. care providers or countries) and to show where improvement is possible. It is important to distinguish between fair comparison and improvement potential, as case-mix adjustment may mask improvement potential. Case-mix adjustment takes into account the effect of patient characteristics that are related to the PREMs and PROMs studied, but are outside the sphere of influence of the units being compared. We developed an approach to assess which patient characteristics would qualify as case-mix adjusters, using data from an international primary care study. Results: We used multilevel analysis, with patients nested in general practices nested in countries. Case-mix adjustment is indicated under the following conditions: there is a main effect of the potential case-mix adjuster on the PREM/PROM; this effect does not vary between units; and the distribution of the potential case-mix adjuster differs between units. Random slope models were used to assess whether the impact of a potential case-mix adjuster varied between units. To assess whether a slope variance is big enough to decide that case-mix adjustment is not indicated, we compared the variances in the categories of a potential case-mix adjuster. Significance of the slope variance is not enough, because small variances may be significantly different from zero when numbers are large. We therefore need an additional criterion to consider a slope variance as important. Borrowing from the idea of a minimum clinically important difference (MCID) we proposed a difference between the variances of 0.25*variance (equivalent to a medium effect size). We applied this approach to data from the QUALICOPC (Quality and costs of primary care in Europe) study. Conclusions: Our approach provides guidance to decide whether or not patient characteristics should be considered as case-mix adjusters. The criterion of a difference between variances of 0.25*variance works well for continuous PREMs and PROMs, but seems to be too strict for binary PREMs and PROMs. Without additional information, it is not possible to decide whether important slope variation is the result of either differences in performance between general practices or countries, or cultural differences. [ABSTRACT FROM AUTHOR]

Abstract Background In recent years, attempts have been made to incorporate patients' experiences into healthcare processes, to complement clinical indicators, with what are known as patient‐reported outcome measures (PROMs) and patient‐reported experience measures (PREMs). While the research into PROMs is more developed, the application of PREMs faces some difficulties. The incorporation of emotional indicators into assessments of the experience is an area that remains to be explored. Objectives This study proposes a new technique to analyse the emotions experienced by patients during the care process, examines how these emotions influence their satisfaction and propose that if healthcare services focus more on patients' emotions, they can improve the effectiveness of the sector. Methods The first, qualitative stage, gathered data from patients to design a patient journey (PJ). The PJ was then reproduced as a video. In a subsequent, quantitative stage, the video was shown to experimental participants, and their emotions were measured through facial expression analysis and a questionnaire. Results A new technique to gather emotional data showed that the emotions patients experience do not affect their satisfaction with their clinical care or the physical aspects of the process. However, their emotions did affect their satisfaction with people and organizations. Conclusions The importance of the emotional component of patients' experiences was underlined. Therefore, healthcare organizations should take account of this dimension, as well as the cognitive, to increase patient satisfaction and improve their care processes. Understanding the impact of the emotions identified at the subconscious level can help improve the patient experience. A new methodology was applied that may help health professionals to collect emotional data about patients' experiences and to develop PREMs. Patient/Public Contribution Patients were involved in all stages of this research. In the exploratory phase, some helped define the touchpoints of the PJ. The data from the subsequent experimental phase were collected from another group, and the emotions they experienced were identified through the analysis of their facial expressions. Based on the results of this study, a working group including patients has been established to work on improvements in the PJ.

Pleasure is a cornerstone of human behavior. Its lack of consideration in the medical sciences has been to the detriment of all patients. The process of including pleasure as a medical outcome has multiple beginnings. A health-related pleasure scale must be developed for clinical purposes and original research must be conducted to establish the added value of measuring pleasure. Treatment comparisons, prediction models for recovery, side-effect investigations, and more may benefit from the collection of patient-reported pleasure. Furthermore, simply inquiring about a patient’s pleasure may serve as a positive intervention by giving them permission to discuss more than the illness in their life. This can enhance the patient-provider relationship and expand the goal of treatment from illness elimination to wellness expansion. Reporting on pleasure can also benefit patients by reallocating their attention towards the positive, rather than the often consistent orientation towards the negative as seen in most patient questionnaires. When we consider what treatments to discuss, we need to know the areas of life from which our patients draw pleasure. The experience of pleasure is what keeps us alive and in pursuit of life. The seeming discomfort and resulting avoidance of medical professionals around the topic of pleasure may be one of the most significant remaining examples of societal stigmas impacting healthcare today. Experience Framework This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework (https://theberylinstitute.org/experience-framework/). Access other PXJ articles related to this lens. Access other resources related to this lens.

Abstract Background To understand our performance with respect to the collection and reporting of patient-reported outcome (PRO) measure (PROM) data, we examined the protocol content, data completeness and publication of PROs from interventional trials conducted at the Royal Marsden NHS Foundation Trust (RM) and explored factors associated with data missingness and PRO publication. Design From local records, we identified closed, intervention trials sponsored by RM that opened after 1995 and collected PROMs as primary, secondary or exploratory outcomes. Protocol data were extracted by two researchers and scored against the SPIRIT-PRO (PRO protocol content checklist; score 0–100, higher scores indicate better completeness). For studies with locally held datasets, the information team summarized for each study, PRO completion defined as the number of expected (as per protocol) PRO measurements versus the number of actual (i.e. completed) PRO measurements captured in the study data set. Relevant publications were identified by searching three online databases and chief investigator request. Data were extracted and each publication scored against the CONSORT-PRO (PRO manuscript content checklist; scored as SPIRIT-PRO above). Descriptive statistics are presented with exploratory comparisons of point estimates and 95% confidence intervals. Results Twenty-six of 65 studies were included in the review. Nineteen studies had accessible datasets and 18 studies published at least one article. Fourteen studies published PRO results. Most studies had a clinical (rather than PRO) primary outcome (16/26). Across all studies, responses in respect of 35 of 69 PROMs were published. Trial protocols scored on average 46.7 (range 7.1–92.9) on the SPIRIT-PRO. Among studies with accessible data, half (10/19) had less than 25% missing measurements. Publications scored on average 80.9 (range 36–100%) on the CONSORT-PRO. Studies that published PRO results had somewhat fewer missing measurements (19% [7–32%] vs 60% [− 26 to 146%]). For individual PROMs within studies, missing measurements were lower for those that were published (17% [10–24%] vs 41% [18–63%]). Studies with higher SPIRIT-PRO scores and PROs as primary endpoints (13% [4–22%] vs 39% [10–58%]) had fewer missing measurements. Conclusions Missing data may affect publication of PROs. Extent of inclusion of SPIRIT-PRO protocol items and PROs as primary endpoints may improve data completeness. Preliminary evidence from the study suggests a future larger study examining the relationship between PRO completion and publication is warranted.

Background: In recent years, attempts have been made to incorporate patients' experiences into healthcare processes, to complement clinical indicators, with what are known as patient‐reported outcome measures (PROMs) and patient‐reported experience measures (PREMs). While the research into PROMs is more developed, the application of PREMs faces some difficulties. The incorporation of emotional indicators into assessments of the experience is an area that remains to be explored. Objectives: This study proposes a new technique to analyse the emotions experienced by patients during the care process, examines how these emotions influence their satisfaction and propose that if healthcare services focus more on patients' emotions, they can improve the effectiveness of the sector. Methods: The first, qualitative stage, gathered data from patients to design a patient journey (PJ). The PJ was then reproduced as a video. In a subsequent, quantitative stage, the video was shown to experimental participants, and their emotions were measured through facial expression analysis and a questionnaire. Results: A new technique to gather emotional data showed that the emotions patients experience do not affect their satisfaction with their clinical care or the physical aspects of the process. However, their emotions did affect their satisfaction with people and organizations. Conclusions: The importance of the emotional component of patients' experiences was underlined. Therefore, healthcare organizations should take account of this dimension, as well as the cognitive, to increase patient satisfaction and improve their care processes. Understanding the impact of the emotions identified at the subconscious level can help improve the patient experience. A new methodology was applied that may help health professionals to collect emotional data about patients' experiences and to develop PREMs. Patient/Public Contribution: Patients were involved in all stages of this research. In the exploratory phase, some helped define the touchpoints of the PJ. The data from the subsequent experimental phase were collected from another group, and the emotions they experienced were identified through the analysis of their facial expressions. Based on the results of this study, a working group including patients has been established to work on improvements in the PJ. [ABSTRACT FROM AUTHOR]

Mario Caccese,1 Silvia Imbevaro,2 Alessandra Feltrin,3 Daniela Costardi,4 Nadia Giordano,5 Maristella Maran,1 Rosalba Martino,1 Ketti Ottolitri,6 Malihe Shams,3 Federica Vascon,7 Anna Roma,5 Antonella Galiano,1 Marco Maruzzo,1 Dario Marino,1 Giuseppe Lombardi,1 Sara Lonardi,5 Antonella Brunello,1 Vittorina Zagonel1 1Department of Oncology, Oncology 1, Veneto Institute of Oncology IOV - IRCCS, Padua, Italy; 2General Directorate, Accreditation and Acknowledgment Unit, Veneto Institute of Oncolog IOV - IRCCS, Padua, Italy; 3Health Department, Psycho-Oncology Unit, Veneto Institute of Oncology IOV - IRCCS, Padua, Italy; 4Scientific Directorate, Patient Education and Empowerment, Veneto Institute of Oncology IOV - IRCCS, Padua, Italy; 5Department of Oncology, Oncology 3, Veneto Institute of Oncology IOV - IRCCS, Padua, Italy; 6Health Department, Clinical Risk Office, Veneto Institute of Oncology IOV - IRCCS, Padua, Italy; 7Department of Imaging and Health Physics, Radiotherapy Unit, Veneto Institute of Oncology IOV - IRCCS, Padua, ItalyCorrespondence: Mario Caccese, Department of Oncology, Oncology 1, Veneto Institute of Oncology IOV - IRCCS, Via Gattamelata, 64, Padua, 35128, Italy, Email mario.caccese@iov.Veneto.itPurpose: The SARS-CoV-2 spread has impacted Healthcare systems. COVID-19 pandemic has had consequences for patients with cancer, being associated with delays in diagnosis, in treatment And follow-up care, increase in overall infection rates and higher mortality. A survey on COVID-19 and a vaccination-questionnaire were developed at different times of the outbreak, to evaluate cancer patient-reported experience measures (PREMs) on the policies implemented to reduce the infection from SARS-CoV-2 and on the timing and methods of COVID-19 vaccination.Patients and Methods: The survey was distributed to all patients accessing the Institute during the “first-wave” Of the pandemic, evaluating patients’ concerns about the pandemic, the pandemics’ consequences on their cancer care, and their perception Of the measures adopted to limit the infection spread. The vaccination-questionnaire was proposed to 10% of the first 5297 cancer patients vaccinated with two doses of the Pfizer-BioNTechCOVID-19 vaccine. This questionnaire aimed at assessing the degree Of satisfaction with the Institutional vaccination campaign and vaccination-related adverse events.Results: From May 18th 2020 to June 15th 2020 the survey was completed by 3238 patients. Most of the responders expressed concern on the pandemic yet acknowledging their oncological disease as a priority. Measures implemented were appreciated by patients. Telemedicine was positively evaluated and the absence of the caregiver during the visit did not determine discomfort for two thirds of patients. From March 6th 2021 to May 8th 2021 the vaccination-questionnaire was completed by 357 patients. The 98.8% were satisfied with the vaccination campaign. No serious vaccination-correlated adverse events were reported. No patient had to delay/discontinue chemotherapy due to vaccination.Conclusion: PREMs during COVID-19 pandemic and related vaccination can provide important information to help reorganization of the health care systems for cancer care. Patients’ feedback on the organizational changes implemented in the emergency period are essential for healthcare improvement and to help informed choices that are consistent with patients’ needs.Keywords: patients’ perspective, PREMs, COVID-19, survey, SARS-CoV-2, cancer patients

Purpose: There has been increasing interest in patient-reported experience measures (PREMs) to evaluate the patient experience and satisfaction with care. We conducted a prospective multicenter cohort study to determine any association between patients’ satisfaction of care and their outcomes 1 year after lumbar spine surgery. Methods: Satisfaction with care was recorded through telephone interviews and a standardized questionnaire. Baseline data collection (300 patients) and 1-year follow-up (209 patients) were conducted through The Swedish National Register for Spine Surgery (Swespine). Exposures were patient experiences, health care professional (HCP) attitudes, shared decision-making, and overall satisfaction with care. Associations were evaluated using adjusted analysis of covariance (ANCOVA) models. Results: Satisfaction with HCP attitudes was not associated with improvements at 1 year in Oswestry Disability Index (ODI) or back pain; however a significantly greater improvement in leg pain score was reported by patients who were highly satisfied (3.0 points) versus the moderate/low satisfaction group (1.3 points; P = 0.008). For shared decision-making, high satisfaction was associated with significantly greater improvements, as compared to moderate/low satisfaction, in ODI (20 vs 11 points; P = 0.001), back pain (2.6 vs 1.7 points; P = 0.05), and leg pain (3.2 vs 1.9 points, P = 0.007). Similarly, high overall satisfaction with care was associated with significantly greater improvements in ODI (18 vs 10 points; P = 0.02), back pain (3.2 vs 0.6 points; P < 0.001), and leg pain (2.6 vs 1.1 points; P = 0.009). Conclusions: Findings indicate that shared decision-making on perioperative care and patients’ overall satisfaction with care were associated with better health outcomes 1 year after lumbar spine surgery.

Background: To understand our performance with respect to the collection and reporting of patient-reported outcome (PRO) measure (PROM) data, we examined the protocol content, data completeness and publication of PROs from interventional trials conducted at the Royal Marsden NHS Foundation Trust (RM) and explored factors associated with data missingness and PRO publication. Design: From local records, we identified closed, intervention trials sponsored by RM that opened after 1995 and collected PROMs as primary, secondary or exploratory outcomes. Protocol data were extracted by two researchers and scored against the SPIRIT-PRO (PRO protocol content checklist; score 0–100, higher scores indicate better completeness). For studies with locally held datasets, the information team summarized for each study, PRO completion defined as the number of expected (as per protocol) PRO measurements versus the number of actual (i.e. completed) PRO measurements captured in the study data set. Relevant publications were identified by searching three online databases and chief investigator request. Data were extracted and each publication scored against the CONSORT-PRO (PRO manuscript content checklist; scored as SPIRIT-PRO above). Descriptive statistics are presented with exploratory comparisons of point estimates and 95% confidence intervals. Results: Twenty-six of 65 studies were included in the review. Nineteen studies had accessible datasets and 18 studies published at least one article. Fourteen studies published PRO results. Most studies had a clinical (rather than PRO) primary outcome (16/26). Across all studies, responses in respect of 35 of 69 PROMs were published. Trial protocols scored on average 46.7 (range 7.1–92.9) on the SPIRIT-PRO. Among studies with accessible data, half (10/19) had less than 25% missing measurements. Publications scored on average 80.9 (range 36–100%) on the CONSORT-PRO. Studies that published PRO results had somewhat fewer missing measurements (19% [7–32%] vs 60% [− 26 to 146%]). For individual PROMs within studies, missing measurements were lower for those that were published (17% [10–24%] vs 41% [18–63%]). Studies with higher SPIRIT-PRO scores and PROs as primary endpoints (13% [4–22%] vs 39% [10–58%]) had fewer missing measurements. Conclusions: Missing data may affect publication of PROs. Extent of inclusion of SPIRIT-PRO protocol items and PROs as primary endpoints may improve data completeness. Preliminary evidence from the study suggests a future larger study examining the relationship between PRO completion and publication is warranted. [ABSTRACT FROM AUTHOR]

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Arie C Verburg,1 Simone A van Dulmen,1 Henri Kiers,2,3 Jan HL Ypinga,4 Maria WG Nijhuis-van der Sanden,1 Philip J van der Wees1 1Radboud University Medical Center, Radboud Institute for Health Sciences, IQ Healthcare, Nijmegen, Netherlands; 2Utrecht University of Applied Sciences, Institute of Human Movement Studies, Utrecht, Netherlands; 3Association for Quality in Physical Therapy (SKF), Zwolle, Netherlands; 4CZ Healthcare Insurance, Tilburg, NetherlandsCorrespondence: Arie C VerburgRadboud University Medical Center, 114 IQ Healthcare, PO Box 9101, Nijmegen 6500 HB, NetherlandsTel +31-243668198Fax +31-243540166Email koen.verburg@radboudumc.nlBackground: Standardization of measures in a common set opens the opportunity to learn from differences in treatment outcomes which can be used for improving the quality of care. Furthermore, a standard set can provide the basis for development of quality indicators and is therefore useful for quality improvement and public reporting purposes. The aim of this study was to develop a standard set of outcome domains and proposed measures for patients with COPD in Dutch primary care physical therapy practice, including a proposal to stratify patients in subgroups.Material and methods: A consensus-driven modified RAND-UCLA appropriateness method was conducted with relevant stakeholders (patients, physical therapists, researchers, policy makers and health insurers) in Dutch primary physical therapy care in eight steps: (1) literature search, (2) first online survey, (3) patient interviews, (4) expert meeting, resulting in a concept standard set and methods to identify subgroups’ (5) consensus meeting, (6) expert meeting (7) second online survey and (8) final approval of an advisory board resulting of the approved standard set.Results: Five outcome domains were selected for COPD: physical capacity, muscle strength, physical activity, dyspnea and quality of life. A total of 21 measures were rated and discussed. Finally, eight measures were included, of which four mandatory measures: Characteristics of practices and physical therapists, Clinical COPD Questionnaire (CCQ) for quality of life, Global Perceived Effect (GPE) for experience, 6-mins Walk Test (6-MWT) for physical capacity; two conditional measures: Hand-Held Dynamometer (HHD) (with Microfet™) for Quadriceps strength, Medical Research Council Dyspnea (MRC) for monitoring dyspnea; and two exploratory measures: Accelerometry for physical activity, and the Assessment of Burden of COPD tool (ABC). To identify subgroups, a method described in the Dutch standard of care from the Lung Alliance was included.Conclusion: This study described the development of a standard set of outcome domains and proposed measures for patients with COPD in primary care physical therapy. Each measure was accepted for relevance and feasibility by the involved stakeholders. The set is currently used in daily practice and tested on validity and reliability in a pilot for the development of quality indicators.Keywords: COPD, standard set, outcome domains, quality measures, PROMs, PREMs, Delphi

Background: Hospitalized patients infected with SARS-CoV-2 should recover within a few weeks. However, even those with mild versions can experience symptoms lasting 4 weeks or longer. These post-COVID-19 condition (PCC) comprise various new, returning, or ongoing symptoms that can last for months or years and cause disability. Few studies have investigated PCC using self-reports from discharged patients infected with SARS-CoV-2 to complement clinical and biomarker studies., Objective: This study aimed to investigate self-reported, persistent PCC among patients infected with SARS-CoV-2 who were discharged during the second and third waves of the COVID-19 pandemic., Methods: We designed, pretested, and posted an ad hoc paper questionnaire to all eligible inpatients discharged between October 2020 and April 2021. At 4 months post discharge, we collected data on PCC and scores for the Multidimensional Fatigue Inventory (MFI), the Patient Health Questionnaire-4 (PHQ-4), a Brief Memory Screening Scale (Q3PC), and a posttraumatic stress disorder scale (PCL-5). Descriptive, inferential, and multivariate linear regression statistics assessed PCC symptomatology, associations, and differences regarding sociodemographic characteristics and hospital length of stay (LOS). We examined whether our variables of interest significantly predicted MFI scores., Results: Of the 1993 valid questionnaires returned, 245 were from discharged patients with SARS-CoV-2 (median age 71, IQR 62.7-77 years). Only 28.2% (69/245) of respondents were symptom-free after 4 months. Women had significantly more persistent PCC symptoms than men (P≤.001). Patients with a hospital LOS ≥11 days had more PCC symptoms as well (P<.001)-women had more symptoms and longer LOS. No significant differences were found between age groups (18-64, 65-74, and ≥75 years old; P=.50) or between intensive care units and other hospitalization units (P=.09). Patients self-reported significantly higher PHQ-4 scores during their hospitalization than at 4 months later (P<.001). Three-fourth (187/245, 76.4%) of the respondents reported memory loss and concentration disorders (Q3PC). No significant differences in the median MFI score (56, IQR 1-3, range 50-60]) were associated with sociodemographic variables. Patients with a hospital LOS of ≥11 days had a significantly higher median PCL-5 score (P<.001). Multivariate linear regression allowed us to calculate that the combination of PHQ-4, Q3PC, and PCL-5 scores, adjusted for age, sex, and LOS (of either ≥11 days [median 2 symptoms, IQR 1-5] or <11 days), did not significantly predict MFI scores (R 2 =0.09; F 4,7 =1.5; P=.22; adjusted R 2 =0.06)., Conclusions: The majority of inpatients infected with SARS-CoV-2 presented with PCC 4 months after discharge, with complex clinical pictures. Only one-third of them were symptom-free during that time. Based on our findings, MFI scores were not directly related to self-reported depression, anxiety, or posttraumatic scores adjusted for age, sex, or LOS. Further research is needed to explore PCC and fatigue based on self-reported health experiences of discharged inpatients infected with SARS-CoV-2., (©Nadine Tacchini-Jacquier, Sévrine Monnay, Nicolas Coquoz, Eric Bonvin, Henk Verloo. Originally published in JMIR Public Health and Surveillance (https://publichealth.jmir.org), 28.08.2024.)

Measuring quality of care with Patient Reported Outcome Measures (PROMs) and Patient Reported Experience Measures (PREMs) is becoming increasingly important. With this study we evaluated ESWL and URS treatments with PROMs/PREMs and gained experience with the execution and implementation of PROMs/PREMs in daily practice. A longitudinal survey study was performed with ESWL and URS urolithiasis patients, using a questionnaire directly (T0-response 69.8%, n = 51) and 10 days after treatment (T1-response 56%, n = 42). Problems on performing daily activities were experienced by 54.2% of ESWL and 61.1% of URS-patients. In the two weeks after treatment 45.8% of the ESWL group and 70.6% of the URS-patients uses pain medication. URS-patients miss more workdays (5.61 versus 1.26 p = 0.025). Patient satisfaction is similar in both groups. With this study we have made a start with PROMs and PREMs for urolithiasis patients. It shows that urolithiasis treatment has influence on patient's life. More knowledge in this area will improve shared decision making. [ABSTRACT FROM AUTHOR]

Background: Patient-reported experience measures (PREMs) are a unique measure of experience of patients which can help address the quality of care of the patients. Objective: Our aim of the study is to collect quality of care outcomes with our newly navigated transcranial magnetic stimulation patient-reported experience measure (nTMS-PREMs) questionnaire among neurosurgical patients undergoing nTMS. Methods: A single-centre prospective nTMS-PREMs 19-item questionnaire study was performed between February 2018 and December 2018 on patient referred for nTMS at our hospital. The Data was analysed using Likert scale, linear and logistic regression using statistical software (STATA 13.0®). Results: Fifty patient questionnaires were collected (30 males, 20 females, mean age of 47.6 ± 2.1 years) among which 74% of patients underwent both motor and language mapping with a mean duration of 103.3 ± 5.1 min. An overall positive response was noted from the results of the questionnaire, tiredness and anxiety being the common effects noted. Patients with the left-sided disease appreciated more the conditions provided in our laboratory (Q4, p = 0.040) and increasing age was related to less confidence and trust (Q6, p = 0.038) in the staff performing the exam. Younger patients tolerated nTMS better than older patients (> 65 years). PubMed literature search resulted in no relevant articles on the use of PREMs in nTMS patients. Conclusion: nTMS is a well-tolerated non-invasive tool and nTMS-PREMS provides a promising role in identifying the unmet needs of the patients and improving the quality of their care. [ABSTRACT FROM AUTHOR]

The Patient Reported Outcome and Experience Measures (PROMs and PREMs) are key assessment tools from the patients’ point of view, with different purposes and different tools. While PREMs have been increasingly used as a tool for improving care quality1, PROMs are generally used to measure effectiveness within clinical trials or for improving patients' health status2. Integration of care has a relevant impact on both, quality of care and patient health status3. This suggests that PROMs and PREMs should be collected in an integrated way, to understand the experience-outcome relationship along the care pathway, thus providing a complete vision of the quality and integration of care from the patient perspective. Performance evaluation systems should change shape and include PREMs and PROMs to tackle care integration4;5. The potential of the PROMs and PREMs combined collection was tested in the heart failure pathway assessment with a single-site pilot study in Tuscany. Disease-specific PROMs questionnaires have been identified in the literature and shared with a group of cardiologists. The short version of the Kansas City Cardiomyopathy Questionnaire (KCCQ-12) was selected. The authors and cardiologists developed a set of questionnaires on the patient experience, for investigating the patients care pathway. The questionnaires including both PROMs and PREMs was administered in specific time-points: discharge; 30 days, 7 and 12 months after the discharge. The preliminary results were presented to the cardiologists, GPs, and nurses, as well as to the healthcare management of the involved hospital and the Local Health Authorities in charge of primary care. PREMs data resulted a key information source on the patients’ view of the service delivery process along the care pathway, clarifying some PROMs results. By using these data all the health professionals could have a complete and integrated vision of the patients' pathway, above and over the single hospitalization event. The integration of PROMs and PREMs enriched existing sources of health information from the patient perspective, as a complement of clinical and administrative data. The pilot study showed that those data can help to overcome a ‘silo’ approach, focused on a specific setting and organization, allowing the longitudinal measurement of outcomes and experience along the whole patient care pathway. The ‘pathway-vision’ of the system provided by the combined collection and reporting of PROMs and PREMS shows the eventual healthcare pathways discontinuities to be addressed in order to integrate care in the patient perspective, so enabling a potential shift of the healthcare system towards integration of care. References: 1- Coulter et al. Collecting data on patient experience is not enough: they must be used to improve care. BMJ 2014;348:g2225. 2- Black. Patient reported outcome measures could help transform healthcare. BMJ 2013;346. 3- Nuti et al. Bridging the Gap between Theory and Practice in Integrated Care: The Case of the Diabetic Foot Pathway in Tuscany. IJIC 2016;16(2). 4- Nuti et al. Rethinking Healthcare Performance Evaluation Systems towards the People- Centredness Approach: Their Pathways, their Experience, their Evaluation. HealthcarePapers 2017;17(1):56-64. 5- Nuti et al. Let’s play the patients music: A new generation of performance measurement systems in healthcare. ManagementDecision 2018;21(1).

National approaches to collecting patient feedback provide trust level information which although can provide a benchmark for trusts often doesn’t provide information about specific services or patients experiences of pathways of care. This more granular level of data could be more informative for local service development and improvement. This research explored the feasibility and usefulness of such approaches. A conceptual model and standard questionnaire of patient experience was developed that might work across a range of services and pathways of care. Seven trusts were recruited as collaborating sites in which the model and survey instrument was tested. These were from different geographical locations and settings. The impact of the pilot and survey results on the improvement and development of services was evaluated. The service- line approach to capturing patient feedback was generally more feasible and considered of value for service improvement. The collection of patients’ experiences across pathways of care was more challenging in terms of the development of the survey and interpretation of results. However, many sites identified specific actionable areas for improvement. This study has shown that it is possible to develop and apply a standardised survey in a range of services and provides evidence that a consistent unified approach to monitoring patient experiences is feasible. However several methodological problems are acknowledged such as the availability of resources and capacity for improvements to services and care. Evidence is now particularly needed to establish how best to produce positive impact from patient feedback.

Objective: The PaRIS Survey is an initiative led by the Organization for Economic Cooperation and Development in twenty-one countries, including Spain, to promote people-centred health care. The objective of the study aimed to describe PROMS and PREMS (Patient Reported Outcomes and Experience Measures, respectively) from patients who were in contact with Primary Care Centres, in order to establish a set of reliable, valid and internationally comparable indicators., Methods: A cross-sectional study with two questionnaires will be carried out: one applied online for professionals from Primary Care Centres and another by telephone or online for patients aged forty-five and older of the same Health Care Centres. The domains covered are: characteristics of the Health Centre and of the professionals; sociodemographic characteristics of the patients; lifestyles; health care capacities; PROMs and PREMs., Conclusions: The study offers a unique opportunity to evaluate the health outcomes and experiences of the care received in Primary Care from patient's perspective. This information is essential to help policymakers better understand the performance of their health system and how it could be improved, particularly in relation to chronic care in Primary Care.

Objective: Almost 80% of the patients responding to the nationwide French patient experience and satisfaction survey (e-Satis) provided free text comments. The objective of this article is to describe an innovative methodology for analysis of this qualitative data., Methodology: This methodological approach is based on analysis of qualitative data from the comments (verbatims) of respondents to the e-Satis survey. Analysis of the verbatims consists in three main steps: (i) analysis of the meaning of the words, with constitution of a thematic dictionary through exploratory research without preconceived notions; (ii) analysis of the syntax, i.e., the way in which the ideas are articulated, which will enable calculation of a linguistic indicator of speakers' involvement in their speech; (iii) production of statistics and characterisation of the themes, which will include three indicators: occurrence of the themes, the average satisfaction shown in the respondents' discourse, and the positive and negative involvement with which they express themselves. Given these results, a priority matrix of four categories of action is established: strong points, priority areas, good practices, and weak signals., Results: This methodological approach was applied to 5868 e-Satis questionnaires out of a total of 10,061 verbatims by respondents hospitalised at the Hospices Civils de Lyon between 2018 and 2019. The analysis identified 28 major themes with 184 sub-themes. An extract is presented in this article for illustration purposes., Discussion: A methodological approach based on analysis of qualitative data will enable transformation of unstructured data (verbatims) into measurable and comparable data. This methodology is structured to overcome the limitations of closed questions; open questions allow respondents to describe their experiences and perceptions in their own words. Moreover, it is a first step toward comparability of results over time with those of other establishments. This approach is unique in France on account of (a) its exploratory thematic research without preconceived notions and (b) its syntactic analysis of verbatims., Conclusions: This verbatim analysis methodology should enable precise and operational characterization of Patient Experience and induce prioritized improvement actions in healthcare institutions., Competing Interests: Déclaration de liens d'intérêts MC : doctorante CIFRE au sein de l'Institut d’études KPAM qui participe au financement de la thèse. PhD candidate at the KPAM study institute, which has contributed to the funding of the thesis. AG : co-fondatrice de l'Institut d’études KPAM. JH et PM déclarent ne pas avoir de liens d'intérêt., (Copyright © 2023 Elsevier Masson SAS. All rights reserved.)

There has been an important drive towards embedding feedback and experience data to improve health services in the UK. The current paper examines the gap in evidence and the lack of adequate measures of inpatient CAMHS experience. It presents the context of inpatient CAMHS and what factors influence care experience, before exploring the current practices for measuring experience and the implications for young people and families. The paper explores the dialectic that-given the nature of the work balancing risk and restrictions in inpatient CAMHS-it is essential that patient voice is at the centre of quality measures, and achieving this comes with a great complexity. The health needs of adolescents are unique, as are the interventions of psychiatric inpatient care, but current measures in routine use are often not developmentally adapted and lack validity. This paper looks to interdisciplinary theory and practice to consider what the application of a valid and meaningful measure of inpatient CAMHS experience might incorporate. It makes the case that the development of a measure of relational and moral experience of inpatient CAMHS would have significant implications for the quality of care and safety of adolescents during a period of acute crisis.

Background: We describe the collaborative development of an evidence based, free online resource namely 'paediatric musculoskeletal matters' (pmm). This resource was developed with the aim of reaching a wide range of health professionals to increase awareness, knowledge and skills within paediatric musculoskeletal medicine, thereby facilitating early diagnosis and referral to specialist care. Methods: Engagement with stakeholder groups (primary care, paediatrics, musculoskeletal specialties and medical students) informed the essential 'core' learning outcomes to derive content of pmm. Representatives from stakeholder groups, social science and web development experts transformed the learning outcomes into a suitable framework. Target audience representatives reviewed the framework and their opinion was gathered using an online survey (n = 74) and focus groups (n = 2). Experts in paediatric musculoskeletal medicine peer reviewed the content and design. Results: User preferences informed design with mobile, tablet and web compatible versions to facilitate access, various media and formats to engage users and the content presented in module format (i.e. Clinical assessment, Investigations and management, Limping child, Joint pain by site, Swollen joint(s) and Resources). Conclusions: We propose that our collaborative and evidence-based approach has ensured that pmm is user-friendly, with readily accessible, suitable content, and will help to improve access to paediatric musculoskeletal medicine education. The content is evidence-based with the design and functionality of pmm to facilitate optimal and 'real life' access to information. pmm is targeted at medical students and the primary care environment although messages are transferable to all health care professionals involved in the care of children and young people. [ABSTRACT FROM AUTHOR]