Patient-Led Research to Develop a Training Programme for Restoring Musical Joy in Cochlear Implant Recipients: A Reflexive Process Evaluation.

BACKGROUND: The role of patients in healthcare research is slowly evolving, although patient roles in the research process are limited. This paper reports on a patient-led research project aiming to develop a musical hearing training programme for patients with a cochlear implant (CI): the Musi-CI programme. A CI is an inner ear prosthesis that allows people with severe hearing loss to hear. However, while speech can be understood, CI users cannot fully enjoy music or feel aversion to it. The Musi-CI programme aims to reduce this music aversion to ultimately improve music enjoyment and social participation. The development of the Musi-CI programme was supported by a consortium of professionals in CI rehabilitation and research. The aim of this paper is to describe and evaluate the Musi-CI programme development process and its impact on professional CI rehabilitation and research. METHODS: Programme development was described using a 3-layered process model of action research, distinguishing the CI user process, the healthcare professional process and the research process. To evaluate perceptions on the programme development process, consortium partners provided written comments and participated in a reflexive evaluation session that was video-recorded. Reflexive evaluation aims for collective learning and strengthening collaboration among participants. Written comments and video data were analysed using template analysis. RESULTS: The involvement of an expert by experience was perceived as challenging but rewarding for all consortium partners, opening up new perspectives on CI-rehabilitation practice and research. Data analysis revealed two themes on the programme development process, professional space and acknowledgement, and two themes on the outcomes on CI rehabilitation and research: critical reflection and paradigm shift. CONCLUSION: Experts by experience represent a different knowledge domain that may contribute to change in rehabilitation and research. PATIENT OR PUBLIC CONTRIBUTION: The development of the programme was initiated by a professional musician and CI user who organized the funding, had a leading role throughout the research process, including the write-up of the results, and co-authored this paper.

'The Listening Series': increasing equity, diversity and inclusion in patient and public involvement and engagement for policy research by listening to and learning from under-represented groups.

BACKGROUND: Policy research aims to provide evidence to inform government policy decisions about health and social care. Engaging and involving the public and patients in this work is widely recognised as essential. Research funders prioritise equality, diversity and inclusion (EDI) in patient and public involvement and engagement (PPIE), but people who are most likely to experience poor outcomes are also those least likely to be involved in research. This paper describes our experience of setting out to understand how to overcome barriers to EDI in PPIE in the research carried out by the National Institute for Health and Care Research (NIHR) Policy Research Unit in Maternal and Neonatal Health and Care (PRU-MNHC), in a PPIE consultation project we called The Listening Series. METHODS: We convened five video-recorded online discussion groups involving 20 individuals advocating for groups who are under-represented in our research. Those taking part included people working with Black and Asian women and families, young parents, those from socially deprived backgrounds, and women and families with physical and learning disabilities. Discussions focussed on practical solutions to addressing challenges to people being excluded, and how to improve EDI in our research. LEARNING AND REFLECTION: Five key themes were identified: 'build trust'; 'involve us from the beginning'; 'show us impact'; 'use clear, appropriate and inclusive communication'; and 'imagine life in our shoes'. We used the learning to create a guidance document for researchers and an accompanying 15-minute film. We also took practical steps to embed the learning strategically by expanding our Task Group for PPIE in the PRU-MNHC to include four Listening Series invitees with a remit to champion EDI in our research and ensure that it is embedded in our PPIE activities. We continue to reflect on and work to address the associated challenges. CONCLUSIONS: The Listening Series helped us rethink our processes for inclusion to go beyond traditional methods of involvement and engagement. The themes identified pose challenges that require time, resource and empathic engagement from researchers to be meaningfully resolved. This has implications for policy makers and research funders who need to consider this in their processes.

WHAT WE KNOW: It is important that health care researchers involve patients and the public from a wide range of social and ethnic backgrounds in research, but we know that this often does not happen. We are a group of researchers and patient/public representatives, working in research to improve care for pregnant women and babies. We wanted to find out how to involve people from more diverse backgrounds in our research. WHAT WE DID: We organised five online discussion groups with 20 people working with Black and Asian families, young parents, those from socially deprived backgrounds and parents with physical or learning disabilities. We asked them what we should do to involve a wider range of people in our research. We called this The Listening Series. We summarised the most important things people said in a written guide for researchers and a short film. We then asked people who had been invited to take part in The Listening Series to join us to develop new ways of working together. WHAT WE LEARNED: The five themes we identified were: 'build trust'; 'involve us from the beginning'; 'show us impact'; 'use clear, appropriate and inclusive communication'; and 'imagine life in our shoes'. In summary, researchers need to take the time to build trusting relationships with patients and the public; actively listening and learning from them. This can be challenging for researchers and patient representatives. Research funders need to allow time and money for this to happen in a meaningful way.

Experiences of patient organizations' involvement in medicine appraisal and reimbursement processes in Finland - a qualitative study.

BACKGROUND: This study investigated how patient representatives have experienced their involvement in medicines appraisal and reimbursement processes with the Council for Choices in Health Care in Finland (COHERE) and the Pharmaceuticals Pricing Board (PPB) and how authorities perceive the role of patient organizations' input. METHODS: Semi-structured thematic individual and pair interviews were conducted in 2021 with representatives (n = 14) of patient organizations and government officials (n = 7) of the Ministry of Social Affairs and Health. The interview data were analyzed using qualitative content analysis. RESULTS: Patient representatives expressed their appreciation for the PPB and the COHERE in creating consultation processes and systematic models that support involvement. However, there were many challenges: patient representatives were uncertain about how their submissions were utilized in official processes and whether their opinions had any significance in decision-making. Patients or patient organizations lack representation in appraisal and decision-making bodies, and patient representatives felt that decision-making lacked transparency. The importance of patient involvement was highlighted by the authorities, but they also emphasized that the patient organizations' contributions were complementary to the other materials. Submissions regarding the medications used to treat rare diseases and those with limited research evidence were considered particularly valuable. However, the submissions may not necessarily have a direct impact on decisions. CONCLUSIONS: The interviews provided relevant input for the development of involvement processes at the PPB and COHERE. The interviews confirmed the need for increased transparency in the medicines assessment, appraisal, and decision-making procedures in Finland.

Mind the gap: Comparing parents' information needs about impending preterm birth to current clinical practices using a mixed methods approach.

Objective: To identify parents' information needs about impending very preterm birth and compare these needs to current information practices in the Netherlands. Methods: Step 1: We surveyed N = 203 parents of preterm infants to assess their information needs. Data were analyzed using inductive thematic analysis. Step 2a: We collected information resources from hospitals (N = 9 NICUs) and via an online search. These materials were analyzed using deductive thematic analysis. Step 2b: We compared findings from Steps 1-2a. Results: We identified four themes pertaining to parents' information needs: (1) participation in care, (2) emotional wellbeing, (3) experience/success stories, and (4) practical information about prematurity. Clinicians' communicative skills and time were considered prerequisites for optimal information-provision. Notably, hospital resources provided mainly medical information about prematurity with some emphasis on participation in care, while parent associations mainly focused on emotional wellbeing and experience/success stories. Conclusion: While parents demonstrate clear information needs about impending very preterm birth, current information resources satisfy these partially. Innovation: Our multidisciplinary research team included both scholars and veteran NICU parents. As such, we identified parents' information needs bottom-up. These parent-driven insights will be used to design an innovative, tailored information platform for parents about impending very preterm birth.

Towards an informed research agenda for the field of personality disorders by experts with lived and living experience and researchers.

BACKGROUND: We describe a collection of themes for a research agenda for personality disorders that was originally formulated for the ESSPD Borderline Congress in 2022. METHODS: Experts with lived and living experience (EE), researchers and clinicians met virtually, exchanged ideas and discussed research topics for the field of personality disorders. The experts - patients, relatives, significant others - named the topics they thought most relevant for further research in the field. These topics were presented at the ESPPD conference in October 2022. RESULTS: The five top themes were: 1. Prevention, early detection and intervention, 2. Recovery beyond symptom improvement, 3. Involvement of relatives in treatment, 4. Gender dysphoria, and 5. Stigma. CONCLUSIONS: In general, the topics reflect current issues and changes in societal values. Overarching aims of research on these topics are the improvement of social participation and integration in society, better dissemination of research, and better information of the general public and political stakeholders.

Current status and future of genomics in fetal and maternal medicine: A scientific review commissioned by European Board and College of Obstetrics and Gynaecology (EBCOG).

This EBCOG guidance reviews the current and future status of genomics within fetal and maternal medicine. This document addresses the clinical uses of genetic testing in both screening and diagnostic testing prenatally. The role of genomics within fetal and maternal medicine is described. The research and future implications of genetic testing as well as the educational, ethical and economic implications of genomics are discussed.

Breaking down the Digital Fortress: The Unseen Challenges in Healthcare Technology-Lessons Learned from 10 Years of Research.

Healthcare is undergoing a fundamental shift in which digital health tools are becoming ubiquitous, with the promise of improved outcomes, reduced costs, and greater efficiency. Healthcare professionals, patients, and the wider public are faced with a paradox of choice regarding technologies across multiple domains. Research is continuing to look for methods and tools to further revolutionise all aspects of health from prediction, diagnosis, treatment, and monitoring. However, despite its promise, the reality of implementing digital health tools in practice, and the scalability of innovations, remains stunted. Digital health is approaching a crossroads where we need to shift our focus away from simply looking at developing new innovations to seriously considering how we overcome the barriers that currently limit its impact. This paper summarises over 10 years of digital health experiences from a group of researchers with backgrounds in physical therapy-in order to highlight and discuss some of these key lessons-in the areas of validity, patient and public involvement, privacy, reimbursement, and interoperability. Practical learnings from this collective experience across patient cohorts are leveraged to propose a list of recommendations to enable researchers to bridge the gap between the development and implementation of digital health tools.

Participatory Approaches in the Context of Research Into Workplace Health Promotion to Improve Physical Activity Levels and Reduce Sedentary Behavior Among Office-Based Workers: Scoping Review.

BACKGROUND: Participatory research (PR) involves engaging in cocreation with end users and relevant stakeholders throughout the research process, aiming to distribute power equitably between the end users and research team. Engagement and adherence in previous workplace health promotion (WHP) studies have been shown to be lacking. By implementing a PR approach, the insights of end users and stakeholders are sought in the co-design of feasible and acceptable intervention strategies, thereby increasing the relevance of the research. OBJECTIVE: This scoping review aims to explore, identify, and map PR techniques and their impact when used in office-based WHP interventions designed to improve physical activity (PA) or reduce sedentary behavior (SB). METHODS: The reporting of this scoping review followed the PRISMA-ScR (Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews). A systematic literature search of 5 electronic databases-Web of Science, PubMed, Scopus, Google Scholar, and OpenGrey-was conducted, searching from January 1, 1995, to February 8, 2023. In total, 2 independent reviewers first screened the retrieved articles by title and abstract, and then assessed the full texts based on the inclusion and exclusion criteria. The search strategy and eligibility criteria were developed and guided by an a priori population (office-based working adults), intervention (a PA WHP intervention that took a PR approach), comparison (no comparison required), and outcome (PA or SB) framework. Data were charted and discussed via a narrative synthesis, and a thematic analysis was conducted. The included studies were evaluated regarding the degree of end user engagement throughout the research process and power shared by the researchers, using Arnstein's ladder of citizen participation. RESULTS: The search retrieved 376 records, of which 8 (2.1%) met the inclusion criteria. Four key strategies were identified: (1) end user focus groups, (2) management involvement, (3) researcher facilitators, and (4) workplace champions. The degree of engagement and power shared was relatively low, with 25% (2/8) of the studies determined to be nonparticipation studies, 25% (2/8) determined to be tokenistic, and 50% (4/8) determined to provide citizen power. CONCLUSIONS: This review provides a foundation of evidence on the current practices when taking a PR approach, highlighting that previous office-based PA WHP studies have been largely tokenistic or nonparticipative, and identified that the end user is only engaged with in the conception and implementation of the WHP studies. However, a positive improvement in PA and reduction in SB were observed in the included studies, which were largely attributed to implementing a PR approach and including the end user in the design of the WHP intervention. Future studies should aim to collaborate with workplaces, building capacity and empowering the workforce by providing citizen control and letting the end users "own" the research for a sustainable WHP intervention. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2021-054402.

The Use of Podcasts as Patient Preparation for Hospital Visits-An Interview Study Exploring Patients' Experiences.

INTRODUCTION: Podcasts have emerged as a promising tool in patient preparation for hospital visits. However, the nuanced experiences of patients who engage with this medium remain underexplored. OBJECTIVES: This study explored patients' experiences of receiving information by way of podcasts prior to their hospital visits. METHODS: Semi-structured interviews were conducted with patients with suspected chronic obstructive pulmonary disease (COPD), lung cancer, or sleep apnea. The method of data analysis chosen was thematic analysis. RESULTS: Based on data from 24 interviews, five key themes were identified: technical challenges in utilization of podcasts; individual preferences for information prior to hospital visits; building trust and reducing anxiety through podcasts; the role of podcasts as an accessible and convenient source of information; and enhancement of engagement and empowerment through podcasts. Additionally, the study highlighted the critical importance of tailoring podcasts' content to individual preferences to optimize the delivery of healthcare information. CONCLUSIONS: Podcasts can serve as a meaningful supplement to traditional information sources for patients. However, it is important to recognize that not all patients may be able to engage with this medium effectively due to technical challenges or personal preferences.

The European Voice of the Patient living with pulmonary hypertension associated with interstitial lung disease: Diagnosis, symptoms, impacts, and treatments.

Pulmonary hypertension (PH) adds a substantial disease burden, including higher mortality, when associated with interstitial lung disease (ILD), a severe, chronic, progressive condition. Yet little is known of the lived experiences, perspectives, priorities, and viewpoints of patients and carers living with PH-ILD. The Voice of the Patient meeting at the center of this qualitative research study aims to provide these difficult-to-obtain insights from a European perspective for the first time. The multistakeholder approach brought together four PH-ILD patients, three primary caregivers, two patient associations, clinical experts, sponsor representatives, and a facilitator. Of the six major themes identified in the thematic analysis, symptoms, and physical limitations were the most impactful. Shortness of breath was the most bothersome symptom affecting patients daily. Further symptoms included fatigue, cough, dizziness, syncope, edema, and palpitations. Physical limitations focused on reduced mobility, impacting patients' ability to perform daily tasks, hobbies, sports, and to enjoy travel. Existing antifibrotic and pulmonary arterial hypertension-targeted treatments were perceived as beneficial. However, despite advances in treatment, severe disease burdens and high unmet medical needs persist from the perspectives of patients. Most meaningful to patients' daily wellbeing was supplemental oxygen, enabling greater mobility. Patients and carers reported difficulties and barriers in navigating the healthcare system and obtaining adequate information to reduce their considerable uncertainties, documenting the substantial challenges that rare and complex conditions such as PH-ILD pose for routine clinical practice beyond PH expert centers and indicating an urgent need for high-quality patient- and clinician-directed information to support patient-centered care.

Patient and family engagement in patient safety in the Eastern Mediterranean Region: a scoping review.

BACKGROUND: Patients can play a key role in delivering safe care by becoming actively involved in their health care. This study aimed at reviewing the literature for evidence of patients' and families' engagement in patient safety in the Eastern Mediterranean Region (EMR). METHODS: We conducted a scoping review of the literature published in English using PubMed, Medline, CINAHL, Scopus, ISI Web of Science, and PsycINFO until June 2023. RESULTS: A total of 9019 studies were screened, with 22 meeting the inclusion criteria. Our review found few published studies of patient and family engagement in patient safety research in the EMR. Thirteen studies explored the attitudes, perceptions, and/or experiences / preferences of patients, families, and healthcare providers (HCPs) regarding patient engagement in patient safety. Nine publications reported patient involvement in patient safety activities at varying levels. Three categories of factors were identified that may affect patient involvement: patient-related (e.g., lack of awareness on their role in preventing harms, unwillingness to challenge HCPs' authority, and cultural barriers); HCP-related (e.g., negative attitudes towards patient engagement, poor patient-provider communication, and high workload); and healthcare setting-related (e.g., lack of relevant policies and guidelines, lack of training for patients, and HCPs, and lack of patient-centered approach). CONCLUSION: This review highlighted limitations in the current literature on patient and family engagement in patient safety in the EMR, including both the depth of evidence and clarity of concepts. Further research is needed to explore how to actively involve patients and their families, as well as to determine whether such involvement translates into improved safety in practice.

The Perspectives of Healthcare Professionals and Managers on Patient Involvement in Care Pathway Development: A Discourse Analysis.

BACKGROUND: The WHO advocates patient and public involvement as an ethical imperative, due to the value of the lived experience of patients. A deeper understanding of the shared meanings and underlying beliefs of healthcare professionals and managers for and against including patients in care pathway development. OBJECTIVE: To explore the considerations of healthcare professionals and managers on the involvement of patients and public in care pathway development. METHODS: In a medical rehabilitation centre we conducted a single case study that was part of a 2-year action research programme on blended care pathway development. Following 14 semistructured interviews with healthcare professionals and managers, we analysed their discourses on the value of patient involvement as well as the potential threats and opportunities. RESULTS: We identified four discourses. Patient as expert frames involvement as relevant, as adding new perspectives and as required to fully understand the patient's needs. Skills and representation is based on the construct that obtaining valuable insights from patients requires certain skills and competences. Self-protection focusses on personal, interprofessional objections to patient involvement. Professional knows best reveals expertise-related reasons for avoiding or postponing involvement. CONCLUSION: These discourses explain why patient and public involvement in care pathway development is sometimes postponed, limited in scope and level of participation, and/or avoided. The following strategies might minimise the paralysing effect of these discourses: strengthen the capabilities of all stakeholders involved; use a mix of complementary techniques to gain involvement in distinct phases of care pathway development; and create/facilitate a safe environment. Put together, these strategies would foster ongoing, reciprocal learning that could enhance patient involvement. PATIENT OR PUBLIC CONTRIBUTION: This study belonged to an action research programme on blended care pathway development (developing an integrated, coordinated patient care plan that combines remote, digital telehealth applications, self-management tools and face-to-face care). Multidisciplinary teams took a quality collaborative approach to quality improvement (considering patients as stakeholders) to develop 11 blended care pathways. Although professionals and managers were instructed to invite patients onto their teams and to attend care pathway design workshops, few teams (3/11) actually did. Unravelling why this happened will help improve patient and public involvement in care pathway development.

A rapid review of guidelines on the involvement of adolescents in health research.

BACKGROUND: Meaningful involvement of adolescents in health research is their fundamental human right and has many benefits. A lack of awareness among researchers on how to meaningfully involve adolescents in health research has been linked to adolescent under involvement in health research. To address this barrier, studies have reported the need for more guidance. To inform the development of better guidelines on adolescent involvement, there is a need to first consolidate the currently available guidance on adolescent involvement in health research and to identify the gaps in these guidelines. This review aims to systematically identify all the currently available guidelines on adolescent involvement in health research and evaluate their scope, content, context, and quality. METHODS: This rapid review was pre-registered with PROSPERO #CRD42021293586. It included documents that incorporated tangible recommendations on the involvement of adolescents in health research. We searched six databases for peer-reviewed literature: MEDLINE, CINAHL, Embase, Scopus, Web of Science, and ERIC. We conducted a grey literature search in Google Scholar, Google, websites of 472 relevant organisations and sought expert input. The quality of the guidelines was assessed using the Appraisal of Guidelines for REsearch & Evaluation (AGREE-II) Instrument. Data was analysed using descriptive analyses and narrative synthesis. RESULTS: We found that the current guidelines on adolescent involvement in health research are often narrow in scope, targeting specific users and populations while focusing on limited research areas. The guidelines individually fail to provide comprehensive coverage of recommendations across all topics related to adolescent research involvement, that are collectively addressed across all included guidelines. Furthermore, these guidelines tend to be context-specific and are generally of low quality, often due to inadequate stakeholder involvement and a lack of rigorous development methods. CONCLUSION: This review provides a consolidated list of guidelines on adolescent involvement in health research along with their quality scores as a resource for researchers to select the guidelines suitable for their research topic, context, and scope for adolescent involvement. There is a need to develop a set of guidelines on adolescent involvement in research, which are comprehensive in scope, cover all key aspects of adolescent involvement in health research, can be adapted for different contexts, and which are based on rigorous and systematic methods. PATIENT AND PUBLIC INVOLVEMENT: Adolescent co-researchers D. B. and C. W. were involved at different stages of the review process. D. B. screened 25% of the peer-reviewed articles at the title and abstract screening stage and 10% at full-text screening stage. C. W. extracted data from 10% of the included guidelines. Both co-researchers reviewed and shared their feedback on the article and are co-authors on this paper. They will also be invited to contribute to further dissemination of the findings from this review.

Getting the most out of remote care: Co-developing a Toolkit to improve the delivery of remote kidney care appointments for underserved groups.

BACKGROUND: Telephone and video appointments are still common post-pandemic, with an estimated 25%-50% of kidney appointments in the United Kingdom still conducted remotely. This is important as remote consultations may exacerbate pre-existing inequalities in those from underserved groups. Those from underserved groups are often not represented in health research and include those with learning disability, mental health needs, hearing/sight problems, young/older people, those from ethnic minority groups. OBJECTIVES: The aim was to develop a Toolkit to improve the quality of remote kidney care appointments for people from different underserved groups. DESIGN: A parallel mixed methods approach with semistructured interviews/focus groups and survey. We also conducted workshops to develop and validate the Toolkit. PARTICIPANTS: Seventy-five renal staff members completed the survey and 21 patients participated in the interviews and focus groups. Patients (n = 11) and staff (n = 10) took part in the Toolkit development workshop, and patients (n = 13) took part in the Toolkit validation workshop. RESULTS: Four themes from interviews/focus groups suggested areas in which remote appointments could be improved. Themes were quality of appointment, patient empowerment, patient-practitioner relationship and unique needs for underserved groups. Staff reported difficulty building rapport, confidentiality issues, confidence about diagnosis/advice given, technical difficulties and shared decision making. CONCLUSION: This study is the first to explore experiences of remote appointments among both staff and those from underserved groups living with kidney disease in the United Kingdom. While remote appointments can be beneficial, our findings indicate that remote consultations need optimisation to meet the needs of patients. The project findings informed the development of a Toolkit which will be widely promoted and accessible in the United Kingdom during 2024.

Key ingredients for successful collaboration in health research: perspectives of patient research partners.

BACKGROUND: There are increasing publications on meaningful collaboration between researchers and patient research partners (PRPs), but fewer publications of such work from the PRP perspective using an evaluation framework. Our aim is to present our own perspectives and reflections on meaningful collaboration as PRPs working on a qualitative research study. MAIN BODY: We were part of a study team that comprised of PRPs, clinicians and academic researchers, and was led by a PRP. The team designed and conducted a qualitative study aimed at understanding how patients make decisions around tapering of biologics for inflammatory bowel disease. The study was conducted online. The PRP lead was trained in qualitative methodology through a one-year certificate program called Patient and Community Engagement Research offered through the University of Calgary Continuing Education. We had received patient-oriented research training and qualitative research training prior to this project. Team members were assigned tasks by our group lead based on member interests and willingness. Some group members were part of the Strategy for Patient-Oriented Research, Inflammation, Microbiome, and Alimentation: Gastro-Intestinal and Neuropsychiatric Effects Network, one of five chronic disease networks in the Strategy for Patient Oriented Research initiative of the Canadian Institutes of Health Research. We describe the five key ingredients to successful collaboration based on our experiences and reflections utilizing the Experience-Reflection-Action Cycle as our framework. The five key ingredients that we identified were: inclusiveness, goal and role clarity, multi-level training and capacity building, shared decision making, and a supportive team lead. CONCLUSION: Overall, our experience was positive. With successful collaboration came an increased level of trust, commitment and performance. There is a need for more studies with diverse PRPs in different settings to validate and/or identify additional factors to improve collaboration in patient-oriented research.

Comparative analysis of centrally mediated and inflammatory pain experiences amongst patients diagnosed with rheumatoid arthritis: A multimethods study.

BACKGROUND: The identification of pain originating from distinct biological processes may lead to individualised pain treatment. In this study, we aimed to explore the pain experiences of patients with rheumatoid arthritis (RA), differentiating between those predominantly exhibiting features of peripheral inflammatory versus centrally mediated pain. METHODS: Through a multimethods approach we (i) quantitatively analysed the differences in pain descriptors between patients diagnosed with RA experiencing peripheral inflammatory and centrally mediated pain, utilising the Short Form-McGill Pain Questionnaire which includes the pain visual analogue scale (VAS) and (ii) qualitatively explored their subjective pain experiences grounded in the biopsychosocial model, commonly applied in chronic pain. RESULTS: Participants with centrally mediated pain reported higher pain scores on the VAS, used a wider range of pain descriptors, and a higher proportion selected each descriptor compared to those with inflammatory pain (p < .001). The qualitative analysis revealed the centrally mediated pain group's experiences were overwhelming and relentless, struggling to precisely articulate the nature of their pain. In contrast, individuals with inflammatory pain expressed their pain in more tangible terms and shared their adaptive and coping strategies. Importantly, both groups revealed the substantial psychological, functional and social impacts of their pain, highlighting the often 'invisible' and misunderstood nature of their symptoms. CONCLUSION: This study has gained a deeper insight into the pain experiences of patients living with RA, particularly in differentiating between centrally mediated and inflammatory types of pain, potentially facilitating a more individualised approach to pain treatment. PATIENT CONTRIBUTION: Patients actively participated in the study conception and design. This engagement includes collaboration with key stakeholders, such as members of the National Rheumatoid Arthritis Society and Patient Research Partners (PRPs), who provided continuous feedback and guidance throughout the research process. Specifically, the qualitative element was coproduced with two PRPs, who were involved in co-leading the focus groups and data analysis.

Improving Diverse and Equitable Involvement of Patients and Caregivers in Research in CKD: Report of a Better Evidence and Translation-Chronic Kidney Disease (BEAT-CKD) Workshop.

Patient and caregiver involvement can enhance the uptake and impact of research, but the involvement of patients and caregivers who are underserved and marginalized is often limited. A better understanding of how to make involvement in research more broadly accessible, supportive, and inclusive for patients with chronic kidney disease (CKD) and caregivers is needed. We conducted a national workshop involving patients, caregivers, clinicians, and researchers from across Australia to identify strategies to increase the diversity of patients and caregivers involved in CKD research. Six themes were identified. Building trust and a sense of safety was considered pivotal to establishing meaningful relationships to support knowledge exchange. Establishing community and connectedness was expected to generate a sense of belonging to motivate involvement. Balancing stakeholder goals, expectations, and responsibilities involved demonstrating commitment and transparency by researchers. Providing adequate resources and support included strategies to minimize the burden of involvement for patients and caregivers. Making research accessible and relatable was about nurturing patient and caregiver interest by appealing to intrinsic motivators. Adapting to patient and caregiver needs and preferences required tailoring the approach for individuals and the target community. Strategies and actions to support these themes may support more diverse and equitable involvement of patients and caregivers in research in CKD.

Patient perspectives on treatment for mantle cell lymphoma and chronic lymphocytic leukemia in Japan.

The increasing number of treatment options for patients with mantle cell lymphoma (MCL) and chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL) in Japan underscores the critical need to comprehend their treatment preferences. In this study, individual semi-structured interviews with 20 Japanese patients with diagnosis of MCL or CLL/SLL were conducted and qualitatively analyzed to elicit concepts important for patients regarding treatment selection. Although effectiveness and safety were imperative for treatment selection, convenience and quality of life were also reported as important attributes. Over the course of their disease journey, patients reported diverse and changing preferences in terms of treatment characteristics. Additionally, there was a discrepancy between their desired and actual levels of involvement in shared decision-making with physicians about treatment choices. Optimal personalized care for better outcomes of patients with MCL and CLL/SLL hinges on healthcare professionals acknowledging individual patient needs and preferences within their cultural, societal and personal context.

The role of time in involving patients with cancer in treatment decision making: A scoping review.

BACKGROUND: Time is often perceived as a barrier to shared decision making in cancer care. It remains unclear how time functions as a barrier and how it could be most effectively utilized. OBJECTIVE: This scoping review aimed to describe the role of time in patient involvement, and identify strategies to overcome time-related barriers. METHODS: Seven databases were searched for any publications on patient involvement in cancer treatment decisions, focusing on how time is used to involve patients, the association between time and patient involvement, and/or strategies to overcome time-related barriers. Reviewers worked independently and in duplicate to select publications and extract data. One coder thematically analyzed data, a second coder checked these analyses. RESULTS: The analysis of 26 eligible publications revealed four themes. Time was a resource 1) to process the diagnosis, 2) to obtain/process/consider information, 3) for patients and clinicians to spend together, and 4) for patient involvement in making decisions. DISCUSSION: Time is a resource throughout the treatment decision-making process, and generic strategies have been proposed to overcome time constraints. PRACTICE VALUE: Clinicians could co-create decision-making timelines with patients, spread decisions across several consultations, share written information with patients, and support healthcare redesigns that allocate the necessary time.