A systematic review on factors influencing Middle Eastern women's utilization of healthcare services: The promise of mHealth.

Objectives: The 2030 Sustainable Development Agenda stresses a feminist approach for healthcare services. Cultural and religious influences impact utilization of healthcare services by Muslim women within the Middle East, posing unique challenges. This paper aimed to investigate the factors influencing Middle Eastern women's utilization of healthcare services within the region. Methods: In the year 2024, a systematic review was conducted. PubMed, Scopus, ProQuest, and the Cochrane Database of Systematic Reviews were searched for this purpose. The quality of the included articles was assessed using the Accuracy, Coverage, Objectivity, Date, Significance (ACODS) checklist. Subsequently, the Joffe method of thematic analysis was employed to analyze the data obtained from the review. Results: A final selection comprising 59 studies was made for inclusion in the research. The studies demonstrated a high level of quality, and the risk of bias within them was deemed acceptable. The thematic analysis revealed seven principal themes, which encompassed Demographic Factors, Level of Education and Awareness, Sources of Information, Risk Factors, Personal Factors, Level of Service Access and Quality, and Organizational Factors. Conclusions: This study highlighted key factors influencing women's utilization of healthcare in the Middle East and potentially the healthcare systems with a large number of Middle Eastern female immigrants around the globe: educational factors such as awareness campaigns and patient education, and personal barriers like fear and cultural norms. Moreover, Telehealth, particularly mHealth, was suggested to enhance women's participation and utilization of healthcare services. Further research is needed to explore this assertion with greater precision.

Patient, family and caregiver engagement in diabetes care: a scoping review protocol.

INTRODUCTION: New treatments and technologies have advanced diabetes care; however, diabetes continues to have a major impact on the daily lives of affected individuals, especially among equity-deserving groups. Evidence from patient engagement literature suggests that involving diverse patients in healthcare can create cost-effective improvements and enhanced efficiency in care that has high patient acceptability and numerous health benefits, as well as improved provider satisfaction. A scoping review will be conducted to provide a cohesive and comprehensive understanding of patient engagement practices and the resulting outcomes. METHODS AND ANALYSIS: The review will follow the recommendations for the conduct of scoping reviews developed by the Joanna Briggs Institute (JBI) Scoping Review Methodology Group. The review will include English-language literature published between 1 January 1990 and the present, searched through MEDLINE (Ovid), Embase (Ovid), CINAHL (EBSCOhost), PsycINFO (Ovid), International Bibliography of the Social Sciences (IBSS), Sociological Abstracts, Applied Social Sciences Index and Abstracts (ASSIA), Scopus, Social Sciences Citation Index and Campbell Collaboration; hand searches; and grey literature. Literature that describes conceptualisations of engagement, methods/strategies for engagement and/or evaluations of engagement across different levels of diabetes care, including direct care, organisational design and governance and policymaking will be included. The review will encompass quantitative, qualitative and mixed-methods studies. Research that is secondary, published in languages other than English, or not specifically focused on patient engagement will be excluded. Screening and extraction will be completed by two independent reviewers and conflicts will be resolved by discussion or a third reviewer, with piloting at each step. Studies will be analysed through descriptive numerical summary and content analysis. ETHICS AND DISSEMINATION: No ethical or safety considerations are pertinent to this work. The results will be disseminated to patients/patient advocacy groups, diabetes organisations, clinicians, researchers, decision-makers and policymakers by way of summary documents, infographics, meeting presentations and through peer-reviewed publications. TRIAL REGISTRATION NUMBER: The protocol has been registered with Open Science Framework: https://doi.org/10.17605/OSF.IO/KCD7Z.

Breast cancer research gaps: a questionnaire-based study to determine overall priorities and compare the priorities of patients, the public, clinicians and scientists.

OBJECTIVE: This study aims to prioritise the themes identified from the three gap analyses performed by a combination of scientists, clinicians, patients and members of the public to determine areas in breast cancer care where research is lacking. We also aimed to compare the priorities of areas of agreed research need between patients, the public, clinicians and scientists. DESIGN: A cross-section of patients, public, clinicians and scientists completed a prioritisation exercise to rank the identified themes where research is lacking in breast cancer care. PARTICIPANTS: Patients, clinicians and scientists who have experienced, managed or worked in the field of breast cancer and members of the public. METHODS: The research areas identified in the Breast Cancer Campaign, Association of Breast Surgery and North West Breast Research Collaborative gap analyses were outlined as 22 themes in lay terminology. Patients, members of the public, clinicians and scientists were invited to complete the prioritisation exercise, on paper or electronically, ranking the themes from 1 to 22. Comparisons were made with arithmetic mean ranking. RESULTS: Of the 510 prioritisation exercises completed, 179 (35%) participants were patients, 162 (32%) public, 43 (8%) scientists and 122 (24%) clinicians. The theme ranked of highest priority overall was 'better prevention' (arithmetic mean rank 6.4 (SE 0.23)). 'Better prevention' was ranked top or second by patients, public and clinicians (7 (0.39), 4.7 (0.34) and 6.8 (0.5), respectively), however, scientists ranked this as their sixth most important factor (7.7 (0.92)). The public and clinicians had good agreement with patients (r=0.84 and r=0.75, respectively), whereas scientists had moderate agreement with patients (r=0.65). Certain themes were ranked significantly differently by participant groups. Compared with clinicians, patients prioritised research into 'alternative to mammograms', 'diagnostic (cancer) blood test' and 'rare cancers' (OR 2.1 (95% CI 1.3 to 3.5), p=0.002, OR 2.1 (95% CI 1.3 to 3.5), p=0.004 and OR 1.7 (95% CI 1.1 to 2.8), p=0.03). Compared with scientists, patients deprioritised 'better laboratory models' (OR 0.4 (95% CI 0.2 to 0.8), p=0.01). CONCLUSION: This study demonstrates that patients, public, clinicians and scientists have different research priorities, with scientists being a particular outlier. This highlights the need to ensure the engagement of patients and public in research funding prioritisation decisions.

Evidence-informed, experience-based co-design: a novel framework integrating research evidence and lived experience in priority-setting and co-design of health services.

OBJECTIVE: To describe a new co-design framework termed Evidence-informed, Experience-based Co-design (E2CD). BACKGROUND: Involving consumers and clinicians in planning, designing and implementing services results in the end-product being more likely to meet the needs of end-users and increases the likelihood of their uptake and sustainability. Different forms and definitions of co-design have been described in the literature and have had varying levels of success in health service redesign. However, many fall short of including people with lived experience in all aspects of the process, particularly in setting priorities for service (re)design. In addition, health services need to deliver evidence-based care as well as care that meets the needs of users, yet few ways of integrating research evidence into co-design processes are described. This paper describes a new framework to approach co-design which addresses these issues. We believe that it offers a roadmap to address some of healthcare's most wicked problems and potentially improve outcomes for some of the most vulnerable people in our society. We use improving services for people with high healthcare service utilisation as a working example of the Framework's application. CONCLUSION: Evidence-informed experience-based co-design has the potential to be used as a framework for co-design that integrates research evidence with lived experience and provides people with lived experience a central role in decision-making about prioritising and designing services to meet their needs.

Person-Centered, Goal-Oriented Care Helped My Patients Improve Their Quality of Life.

When the goal is to help patients improve their quality of life, it makes sense to focus directly on the activities and relationships that are most important to each patient. This can be accomplished most effectively by following a three-step process that includes 1) connecting with the patient around what matters to them, 2) co-creating a goal-oriented plan, and 3) collaborating with patient, family, team members, and consultants to increase the probability of success. Once this approach has been mastered and the necessary systems, processes, and relationships are in place, this should not take more time than a problem-oriented approach, and it will almost certainly be more satisfying for both physician and patient. The impact on population-based quality metrics is uncertain. Though fewer patients may choose to follow standard recommendations, those who do may be more likely to adhere to them.

Individuals and Families Affected by RYR1-Related Diseases - The Patient/Caregiver Perspective.

Background and objective: Pathogenic variants of RYR1, the gene encoding the principal sarcoplasmic reticulum calcium release channel (RyR1) with a crucial role in excitation-contraction coupling, are among the most common genetic causes of non-dystrophic neuromuscular disorders. We recently conducted a questionnaire study focusing on functional impairments, fatigue, and quality of life (QoL) in patients with RYR1-related diseases (RYR1-RD) throughout the recognized disease spectrum. In this previous questionnaire study the medical perspective was taken, reflective of a study protocol designed by neurologists and psychologists. With this present study we wanted to specifically address the patient perspective. Methods: Together with affected individuals, family members, and advocates concerned with RYR1-RD, we developed an online patient survey that was completed by 227 patients or their parents/other caretakers (143 females and 84 males, 0-85 years). We invited 12 individuals, representing most of the patient group based on age, sex, race, and type and severity of diagnosis, to share their personal experiences on living with a RYR1-RD during an international workshop in July 2022. Data were analyzed through a mixed-methods approach, employing both a quantitative analysis of the survey results and a qualitative analysis of the testimonials. Results: Data obtained from the combined quantitative and qualitative analyses provide important insights on six topics: 1) Diagnosis; 2) Symptoms and impact of the condition; 3) Physical activity; 4) Treatment; 5) Clinical research and studies; and 6) Expectations. Conclusions: Together, this study provides a unique patient perspective on the RYR1-RD spectrum, associated disease impact, suitable physical activities and expectations of future treatments and trials, and thus, offers an essential contribution to future research.

Translation and psychometric validation of the Patient Participation Culture Tool for healthcare workers in Chinese nursing context.

BACKGROUND: Promoting patient participation stands as a global priority in nursing care. Currently, there is a lack of a standardized tool to assess the culture of patient participation from the perspective of nurses in China. AIMS: To translate and examine the validity and reliability of the Patient Participation Culture Tool for healthcare workers (PaCT-HCW) on general hospital wards in Chinese nursing context. METHODS: A cross-sectional research study was conducted among 812 nurses. Brislin's recommendations were adhered to during the translation of the scale. Validity was assessed using construct validity, content validity, and face validity. Split-half reliability, test-retest reliability, and internal consistency reliability were used to evaluate dependability. The study was guided and reported following the STROBE checklist and recommendations for reporting the results of studies of instrument and scale development and testing. RESULTS: The Chinese version of PaCT-HCW (the PaCT-HCW-C) exhibits good face validity and content validity. A rigorous exploratory factor analyse verified a six-factor (competence, support, perceived lack of time, information sharing and dialogue, response to questions and acceptance of a new role) scale structure with a cumulative variance contribution of the factors with 44 items of 68.840%. With a Cronbach's α coefficient of 0.962, split-half reliability of 0.866, and intraclass correlation coefficients of 0.989, the instrument demonstrates great reliability. Confirmatory factor analysis results validated the consistency of the six factors with the structure of the PaCT-HCW-C scale. CONCLUSIONS: The 44-item PaCT-HCW-C is a valid and reliable instrument with satisfactory psychometric properties. It could serve as a tool for assessing the effectiveness of international programs aimed at fostering patient participation from the perspective of nurses, while also providing insights from China's practical experiences.

Development and psychometric validation of a patient safety assessment tool in German Radiation Oncology: the PaSaGeRO Study protocol.

INTRODUCTION: Ensuring patient safety in radiation oncology is crucial for delivering high-quality healthcare. Patient safety indicators (PSIs) provide a mechanism for identifying, quantifying and evaluating risks and the effectiveness of safety measures. However, there is currently no specialised set of PSIs tailored for radiation oncology in Germany. This study seeks to: (1) create PSIs specifically designed for radiation oncology settings, (2) develop and psychometrically validate an instrument for assessing safety in German radiation oncology facilities and (3) evaluate the feasibility of implementing this instrument in routine clinical practice. The finalised questionnaire will serve as a self-assessment instrument for radiation oncology departments, aiding them in evaluating their efficacy in ensuring patient safety, prioritising safety interventions and tracking performance over time. METHODS AND ANALYSIS: We are undertaking a 3-year, mixed methods study to address our objectives. For the identification of PSIs, we will conduct a comprehensive review on the PubMed database, along with reviewing national and international guidelines and recommendations. To refine the initial set of indicators, we will consult with experts, including physicians, medical physicists, nurses, administrators and radiation therapists through focus groups. We will employ a Delphi study for the final consensus and selection of indicators. Additionally, the perspectives of patients will be incorporated by formation of a project patient's committee which meets throughout the project phases. We will reformulate the identified PSIs into questionnaire items. The questionnaire's clarity and comprehensibility will be validated through cognitive interviews, followed by psychometric testing in a pilot group of over 150 participants from German radiation oncology departments. The final version of the questionnaire will then be implemented in routine healthcare settings and we will interview individual users about their experiences with the questionnaire in semistructured interviews. We will convene a subsequent expert workshop to discuss the study results and explore avenues for the questionnaire's broader implementation. The finalised questionnaire will be made accessible via a web app. We hereby present the study potocol as a pre-results report. ETHICS AND DISSEMINATION: Ethical approval for this study was granted by the Hamburg Ethics Committee (Approval Number: 2023-101018-BO-ff). This trial is registered by the ARO (Arbeitsgemeinschaft Radioonkologie /working group for radiation oncology of the German Cancer Society), protocol number 2023-03 and in the German register for clinical trials with the number DRKS00034690. Study results will be published in conference papers and talks as well as journal papers with focus on open access journals. The results will be also disseminated during the implementation workshop in phase III, which will involve a diverse group of stakeholders. TRIAL REGISTRATION NUMBER: DRKS00034690.

Users remain overlooked: Shared decision-making processes for people with anxiety disorders.

WHAT IS KNOWN ON THE SUBJECT?: Patients do not always receive enough information about their diagnosis and their perceived participation in decision-making about their treatment is low. Some participants reported feeling very uncertain when the physician invited them to choose between these options. Others users expressed their satisfaction with the trend away from paternalistic attitudes in the health system. There is a trend towards pharmacological prescription as a first approximation. This contrasts with the recommendations of scientific organizations based on evidence and cost-effectiveness studies on the offer of psychological interventions as the first option. The user groups pointed out that active coping, based on exposure to anxiety-generating situations, made a significant contribution to alleviating their anxiety disorders. However, some of those interviewed rejected this type of intervention. WHAT THE PAPER ADDS TO EXISTING KNOWLEDGE?: Users diagnosed with anxiety disorders miss more information about the disorder and participation in its treatment. Opposite positions coexist in terms of participation in the choice of treatment. Pharmacological treatment is most commonly the first option offered. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: This study is an example in itself of the involvement of users in the healthcare process, and therefore placing them at the centre of attention, as reflected in healthcare policies and clinical practice guidelines. It promotes the identification of needs that users diagnosed of anxiety disorders may have, with the aim of putting in place, from healthcare professionals and health services, the necessary supports adapted to these. Mental health nurses are well-positioned to offer support and guidance during the process of involvement and shared decision-making. ABSTRACT: INTRODUCTION: An essential aspect of mental health treatment and recovery is the degree of involvement by health service users in the process. AIM/QUESTION: Explore the values, demands and preferences of persons diagnosed with anxiety disorders, their participation in the treatment provided, and the response of the health system in this regard. METHODS: A qualitative study was conducted, with 51 participants. Nine focus groups and four in-depth interviews took place. RESULTS: Three broad categories were identified: (1) diagnosis; (2) treatment options offered and shared decision-making; and (3) coping with the disorder. Sometimes patients do not receive enough information to cover their needs. A trend towards drug prescription as a first approach was observed, while active coping based on exposure to anxiogenic situations was indicated as the most effective option. CONCLUSION: Shared decision-making is a necessary aspect of treatment, and the therapeutic process should be adapted to match the service user's preferences, values and needs. IMPLICATIONS FOR THE PRACTICE: This research identifies the needs of patients diagnosed with anxiety disorders and promotes, therefore, from healthcare professionals and services, the provision of measures to meet these needs.

The psychological effects of research participation on people with dementia: findings from a German exploratory interview study.

The German National Dementia Strategy aims to engage people with dementia in research projects. However, the effects of such research participation on experience and behavior have been insufficiently explored. This study aimed to investigate the psychological effect of research participation on people living with dementia. In a qualitative, exploratory approach, guideline-based interviews were conducted with four persons with dementia who had served as co-researchers on an advisory board in a health services research study for 8 months at that time. The analysis revealed predominantly positive effects of research participation at all levels of experience and behavior. Most effects were reported by the co-researchers on a cognitive level. Both the perception of being competent and of making a positive contribution to oneself and/or others are key effects of research participation. The main effects on an emotional level were joy and wellbeing and on a behavioral level were positive social contacts and social communication. Sadness and insecurity represent the sole negative effects. Nuanced focal points of effects among the individual interviews were found. The results align with existing research highlighting the positive effects of participation on people with dementia. Through advancing an interdisciplinary perspective on their research involvement, we advocate for heightened attention to this topic within the realm of psychology.

Experiences of Decision Making and Attitudes Toward Digital Health Services Among Older Adults in Finland.

Shared decision making (SDM) is based on the clinical expertise of healthcare professionals and patients' preferences and values. Digital health services may offer new possibilities for patient-generated data e.g. in SDM. This study aimed to assess older adults' experiences of decision making in healthcare and attitudes toward digital health and social services. Data were collected via an online survey of 629 respondents. Results showed that digital services are considered beneficial, yet half of respondents needed guidance in their use. Many factors affect SDM and the perceived benefits of digital services. Based on our findings digital services are expected to provide guidance and individualised user experience. More research is needed to provide services with equitable access for people with special needs.

Development of A structured integrated post-Pulmonary Embolism care model: The Attend-PE model.

BACKGROUND: More than 50% of patients with pulmonary embolism (PE) experience persistent functional limitations. Despite guideline recommendations for a structured integrated care model for patients with PE, consensus on an optimal follow-up strategy is lacking, and evidence is insufficient. OBJECTIVES: To describe the development of a structured model for PE follow-up using coproduction methods. METHODS: Coproduction of A structured integrated postPulmonary Embolism care (Attend-PE) model was conducted from October 2021 to June 2022, featuring participatory design techniques. This was combined with a stepwise approach based on Intervention Mapping to ensure that the developed model was evidence-based and theoretically grounded. RESULTS: Development of the Attend-PE model included 1) a needs assessment mapping follow-up at 18 sites treating PE in Denmark; 2) definition of the overall goal and performance objectives of the Attend-PE model, based on the needs assessment in combination with a literature review; 3) coproduction of the Attend-PE model in workshops with patient representatives, healthcare professionals, and experts in the field; and 4) refinement of the structure and organization of the Attend-PE model and production of the patient education material. The Attend-PE model outlines a structured approach for in-hospital follow-up, involving group-based patient education, individual consultations, and patient-reported outcomes to assess physical and psychological well-being. The model supports a personalized posthospitalization care plan. CONCLUSION: The coproduction process was successful in developing a structured follow-up model aligned with patients' needs, health provider perspectives, and existing guidelines. The Attend-PE model is currently undergoing clinical evaluation to determine its effectiveness and usability.

The Association Between Physical Distancing Behaviors to Avoid COVID-19 and Health-Related Quality of Life in Immunocompromised and Nonimmunocompromised Individuals: Patient-Informed Protocol for the Observational, Cross-Sectional EAGLE Study.

BACKGROUND: Immunocompromised individuals are known to respond inadequately to SARS-CoV-2 vaccines, placing them at high risk of severe or fatal COVID-19. Thus, immunocompromised individuals and their caregivers may still practice varying degrees of social or physical distancing to avoid COVID-19. However, the association between physical distancing to avoid COVID-19 and quality of life has not been comprehensively evaluated in any study. OBJECTIVE: We aim to measure physical distancing behaviors among immunocompromised individuals and the association between those behaviors and person-centric outcomes, including health-related quality of life (HRQoL) measures, health state utilities, anxiety and depression, and work and school productivity impairment. METHODS: A patient-informed protocol was developed to conduct the EAGLE Study, a large cross-sectional, observational study, and this paper describes that protocol. EAGLE is designed to measure distancing behaviors and outcomes in immunocompromised individuals, including children (aged ≥6 mo) and their caregivers, and nonimmunocompromised adults in the United States and United Kingdom who report no receipt of passive immunization against COVID-19. We previously developed a novel self- and observer-reported instrument, the Physical Distancing Scale for COVID-19 Avoidance (PDS-C19), to measure physical distancing behavior levels cross-sectionally and retrospectively. Using an interim or a randomly selected subset of the study population, the PDS-C19 psychometric properties will be assessed, including structural validity, internal consistency, known-group validity, and convergent validity. Associations (correlations) will be assessed between the PDS-C19 and validated HRQoL-related measures and utilities. Structural equation modeling and regression will be used to assess these associations, adjusting for potential confounders. Participant recruitment and data collection took place from December 2022 to June 2023 using direct-to-patient channels, including panels, clinician referral, patient advocacy groups, and social media, with immunocompromising diagnosis confirmation collected and assessed for a randomly selected 25% of immunocompromised participants. The planned total sample size is 3718 participants and participant-caregiver pairs. Results will be reported by immunocompromised status, immunocompromising condition category, country, age group, and other subgroups. RESULTS: All data analyses and reporting were planned to be completed by December 2023. Results are planned to be submitted for publication in peer-reviewed journals in 2024-2025. CONCLUSIONS: This study will quantify immunocompromised individuals' physical distancing behaviors to avoid COVID-19 and their association with HRQoL as well as health state utilities. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/52643.

Development and Validation of a Mobile-Centered Digital Health Readiness Scale (mDiHERS): Health Literacy and Equity Scale.

BACKGROUND: There has been a rapid expansion of digital health care services, making the need for measuring and improving digital health readiness a priority. In response, our study team developed the Mobile-Centered Digital Health Readiness: Health Literacy and Equity Scale (mDiHERS) to measure digital health readiness. OBJECTIVE: We aim to develop and validate a scale that assesses digital health readiness, encompassing literacy and equity, and to ensure the effective use of mobile-centered digital health services. METHODS: This study was conducted from October 2021 to October 2022 to develop and validate the mDiHERS. Participants included patients with inflammatory bowel disease, which is a chronic condition requiring continuous management, and experts in medical and nursing informatics. The scale development involved a literature review, focus group interviews, and content validity evaluations. A total of 440 patients with inflammatory bowel disease were recruited for the validation phase, with 403 completing the survey. The scale's validity and reliability were assessed through exploratory factor analysis and Cronbach α. The scale was translated into English by translators and bilingual and native researchers, ensuring its applicability in diverse settings. RESULTS: The mDiHERS consists of 36 items across 6 domains, with a 5-point Likert scale for responses. The validation process confirmed the scale's construct validity, with 4 factors explaining 65.05% of the total variance. The scale's reliability was established with Cronbach α values ranging from 0.84 to 0.91. The scale's development considered the technical proficiency necessary for engaging with health mobile apps and devices, reflecting the importance of subjective confidence and objective skills in digital health literacy. CONCLUSIONS: The mDiHERS is a validated tool for measuring patients' readiness and ability to use digital health services. The mDiHERS assesses user characteristics, digital accessibility, literacy, and equity to contribute to the effective use of digital health services and improve accessibility. The development and validation of the mDiHERS emphasize the importance of confidence and competence in managing health digitally. Continuous improvements are necessary to ensure that all patients can benefit from digital health care.

Application of the PAPERS Grading Criteria Within a Rapid Evidence Review to Determine the Psychometric and Pragmatic Properties of Patient Empowerment Tools.

Self-management of long-term conditions requires health professionals to understand and develop capabilities that empower the population they serve. A rapid evidence review was undertaken to assess the current evidence based on the psychometric properties of patient empowerment tools. MEDLINE was searched, and data were extracted for each publication and scored using a modified Psychometric and Pragmatic Evidence Rating Scale (PAPERS) evidence rating scale. The results were grouped into the following domains: (a) health literacy; (b) patient activation; (c) long-term conditions; (d) self-management needs and behaviors. A full-text review of 65 publications led to the inclusion of 29 primary studies. The highest scoring tools were selected with respect to performance for each domain: (a) Newest Vital Sign and the Brief Health Literacy Screen; (b) Consumer Health Activation Index and PAM-13; (c) LTCQ and LTCQ8; and (d) SEMCD and Patient Enablement Instrument. PAPERS was a useful tool in determining the generalizability, validity, and reliability of these patient empowerment tools. However, further research is required to establish whether an individual's health literacy status influences patient empowerment tool outcomes.

Patient engagement in the development and implementation of navigation services: a scoping review protocol.

INTRODUCTION: Patient navigation, a complex health intervention meant to address widespread fragmentation across the healthcare landscape, has been widely adopted internationally. This rapid uptake in patient navigation has led to a broadening of the service's reach to include those of different social positions and different health conditions. Despite the popularity and prevalence of patient navigation programmes, the extent of patient involvement and/or partnership in their construction has yet to be articulated. This scoping review will explore and describe the extent to which patients have been engaged in the development and/or implementation of patient navigation programmes to date. METHODS AND ANALYSIS: This scoping review will adhere to the Arksey and O'Malley framework for conducting scoping reviews. The electronic databases MEDLINE, CINAHL, EMBASE, PsycINFO, SocINDEX and Scopus were searched in September 2023 using terms related to patient navigation and programme implementation. Inclusion criteria stipulate that the studies must: (1) include an intervention labelled as 'navigation' in a healthcare setting and (2) describe patient engagement in the design, development and/or implementation process of said patient navigation programme. To assess study eligibility, two reviewers will independently read through the titles and abstracts, followed by the full texts, of each study identified from the search strategy to determine whether they meet inclusion criteria. Reviewers will then extract data from the included studies, present descriptive study characteristics in tables, and perform qualitative content analysis. ETHICS AND DISSEMINATION: This review does not require ethics approval as data will be collated exclusively from peer-reviewed articles and thesis dissertations. A manuscript summarising the results of the review will be written and submitted to a peer-reviewed journal for publication. The review will map aspects of programme development that have repeatedly utilised patient perspectives and areas where engagement has lagged. This review will also depict how patient engagement varies across programme characteristics.

Implementing a real-time patient experience feedback in inpatient rehabilitation: Process evaluation informed by the normalisation process theory.

PURPOSE: Near real-time patient experience feedback (NRTPEF) can enable a patient-centric, immediate service recovery but has not been widely used in inpatient rehabilitation. We 1) assess the utility, feasibility, and acceptability of implementing a new NRTPEF, perceived by patients and providers; and 2) understand how the NRTPEF became embedded into routine provider practices. MATERIALS AND METHODS: Mixed methods process evaluation of the 8-month implementation of an innovative NRTPEF in an inpatient rehabilitation unit, using interviews and focus groups with all the service-unit leaders and interviews with a randomised sample of patients. Beyond descriptive statistics and content analysis, the Normalisation Process Theory (NPT) informed a framework analysis. RESULTS: Patients and service-unit leaders perceived high utility in the NRTPEF (median: 9 for both; 0-10 scale) and qualitative comments emphasised the value of providing/obtaining timely feedback. The system was found feasible and acceptable for patients (median: 9.5), but with an improvement margin for providers (median: 7.3). Suggestions include strengthening the data-relay format. Even in the pilot form, providers found the NRTPEF became embedded into practice (median 10; average: 8.6). The analysis based on the NPT shows how providers saw differential value, engaged with, and used the patient feedback into reconfigured practices. CONCLUSION: An innovative NRTPEF was found useful, feasible and acceptable, but with refinement opportunities before scale-up.

Shared decision-making in healthcare: development and assessment of the translated Finnish version of the SDM-Q-9.

AIMS: The aim of this study was to assess the cultural validity and reliability of a Finnish version of the nine-item Shared Decision-Making Questionnaire (SDM-Q-9) in a sample of patients with different sociodemographic characteristics. METHOD: The original SDM-Q-9 was translated into Finnish with the agreement of the developers of the original scale. The standardised translation procedure was followed by a pilot test of the questionnaire. The data were collected from an online questionnaire. Reliability was estimated by Cronbach's alpha. Structural validity of the questionnaire was assessed by confirmatory factor analysis. RESULTS: The pilot study assessing the cultural validity of the scale was a success, as it did not find any expressions needing to be revised. The Finnish version of the SDM-Q-9 - the SDM-Q-9-FIN - was tested in the study where a total of 736 patients responded to the questionnaire. The questionnaire yielded high reliability with a Cronbach's alpha of 0.92. Confirmatory factor analysis confirmed the unidimensional factor structure with Item 1 excluded. CONCLUSIONS: The SDM-Q-9-FIN was shown to be a reliable instrument for evaluating shared decision-making among Finnish patients. Further testing and research are recommended among a greater diversity of patient groups.

One-to-one peer-coaching for patients with cancer - results of a pilot study.

PURPOSE: Cancer is a life threatening disease with negative impact on quality of life and psychological well-being. In international studies, one-to-one peer support and counseling have been shown to improve the psychological well-being of cancer patients. In the study presented, we developed and evaluated an innovative program of peer-coaching. In this program at the University Hospital of Freiburg, cancer survivors were trained to support peers by sharing experience. METHODS: In the project, N = 25 cancer survivors were trained to conduct supportive one-to-one conversations with acute patients or patients in aftercare. Based on a prospective observational study, patients were interviewed using questionnaires before and after the conversations. We assessed expectations and experiences with the peer-coaching as well as psychosocial parameters (PHQ9, GAD7, SSUK, NCCN-distress thermometer). RESULTS: A total of 52 patients had at least one contact with a peer-coach. Most of the patients attended 1-3 sessions. In total, 85 contacts pairing peer-coaches with patients were conducted. Patients showed on average a high level of distress but a low rate of psychiatric comorbidity. The supportive conversations met the patients` needs. Sharing experiences and empowerment were the most relevant benefits for the patients. Both patients and trained peers showed high satisfaction levels with the program. CONCLUSION: Our findings support the feasibility and utility of a peer-coaching program in which trained cancer survivors, acting as peer-coaches, support other patients during or after their oncological treatment. In a further study, the efficacy of peer-coaching should be investigated based on a randomized-controlled trial. TRIAL REGISTRATION: The trial was registered in the German Clinical Trials Register (No. DRKS DRKS00017500) on 12.12.2019.

Examining the content validity of the Comprehensive Assessment of Functioning for Mental Illness-Subjective Version (CAMI-S) with reference to the framework of the International Classification of Functioning, Disability, and Health (ICF).

Aim: To support the achievement of life goals and social participation of persons with mental illness, based on the World Health Organization's International Classification of Functioning, Disability, and Health (ICF), we generated items, identified domains, and examined the content validity of the Comprehensive Assessment of Functioning for Mental Illness-Subjective Version (CAMI-S). The purpose was to assess patients' strengths and weaknesses by incorporating the patient and public involvement perspective. Methods: Focus group interviews on the items to be included were conducted with Group A. A draft scale was constructed by extracting articles mentioning factors for social participation and recovery for each ICF component from PubMed. Group B participants rated themselves using the draft and highlighted items they considered inappropriate. Experts then rated the importance of the items through the Delphi method. Lastly, Group C participants evaluated whether the draft scale would help in understanding their strengths and weaknesses. Results: The interviews revealed subjective experience items. The draft scale had 81 items (physical and mental functions, 10; activities, 23; participation, 24; environment, 12; individuals, six; and subjective experience, six). Through the Delphi method, the number of items was reduced to 34 in six domains. Most participants (N = 50) indicated that it helped them ascertain patients' strengths and weaknesses (mean = 2.11 ± .714). Completion time for the scale was 56 min, including the 60-item face sheet (20-110 min). Conclusion: The CAMI-S helped participants ascertain patients' strengths and weaknesses. Its reliability and validity will be verified through a large-scale survey in the future.