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Population ageing together with the greater prevalence of multimorbidity add to the need for and complexity of healthcare services. This makes it important to encourage and empower patients with chronic diseases to take care of themselves. An associated goal of such efforts is to significantly reduce the burden on healthcare systems and positively impact patients' health outcomes and quality of life. The paper presents a multi-criteria decision model for assessing the health and self-care of patients with chronic diseases in the home environment. The model is based on the DEX methodology and was tested on ten cases. The model assists with the timely recognition of relevant symptoms and signs in decision-making about health and self-care. It can be used to promote patients taking on an active role with respect to caring for their health and well-being. The model could be integrated into self-care processes. It might also serve as a basis for an interprofessional approach to supporting older patients with chronic diseases living as fully and independently as possible in the environment in which they feel most comfortable. [ABSTRACT FROM AUTHOR]

Parents are often appointed a passive role in the care for their hospitalised child. In the family-integrated care (FICare) model, parental involvement in neonatal care is emulated. Parental participation in medical rounds, or family-centred rounds (FCR), forms a key element. A paucity remains of randomised trials assessing the outcomes of FCR (embedded in FICare) in families and neonates, and outcomes on an organisational level are relatively unexplored. Likewise, biological mechanisms through which a potential effect may be exerted are lacking robust evidence. Ten level two Dutch neonatal wards are involved in this stepped-wedge cluster-randomised trial FCR (embedded in FICare) by one common implementation strategy. Parents of infants hospitalised for at least 7 days are eligible for inclusion. The primary outcome is parental stress (PSS:NICU) at discharge. Secondary outcomes include parental, neonatal, healthcare professional and organisational outcomes. Biomarkers of stress will be analysed in parent–infant dyads. With a practical approach and broad outcome set, this study aims to obtain evidence on the possible (mechanistic) effect of FCR (as part of FICare) on parents, infants, healthcare professionals and organisations. The practical approach provides (experiences of) FICare material adjusted to the Dutch setting, available for other hospitals after the study. [ABSTRACT FROM AUTHOR]

Living with chronic kidney disease (CKD) is associated with hardships for patients and their care-partners. Empowering patients and their care-partners, including family members or friends involved in their care, may help minimize the burden and consequences of CKD-related symptoms to enable life participation. There is a need to broaden the focus on living well with kidney disease and re-engagement in life, including an emphasis on patients being in control. The World Kidney Day (WKD) Joint Steering Committee has declared 2021 the year of "Living Well with Kidney Disease" in an effort to increase education and awareness on the important goal of patient empowerment and life participation. This calls for the development and implementation of validated patient-reported outcome measures to assess and address areas of life participation in routine care. It could be supported by regulatory agencies as a metric for quality care or to support labelling claims for medicines and devices. Funding agencies could establish targeted calls for research that address the priorities of patients. Patients with kidney disease and their care-partners should feel supported to live well through concerted efforts by kidney care communities, including during pandemics. In the overall wellness program for kidney disease patients, the need for prevention should be reiterated. Early detection with a prolonged course of wellness despite kidney disease, after effective secondary and tertiary prevention programs, should be promoted. WKD 2021 continues to call for increased awareness of the importance of preventive measures throughout populations, professionals, and policy makers, applicable to both developed and developing countries.

Living with chronic kidney disease (CKD) is associated with hardships for patients and their care partners. Empowering patients and their care partners, including family members and friends involved in their care, may help minimize the burden and consequences of CKD-related symptoms to enable increased life participation. There is a need to broaden the focus on living well with kidney disease and reengagement in life, including emphasis on the patient being in control. The World Kidney Day (WKD) Joint Steering Committee has declared 2021 the year of "Living Well with Kidney Disease" in an effort to increase education about and awareness of the important goal of patient empowerment and life participation. This calls for the development and implementation of validated patient-reported outcome measures to assess and address areas of life participation in routine care. It could be supported by regulatory agencies as a metric for quality care or to support labeling claims for medicines and devices. Funding agencies could establish targeted calls for research that address the priorities of patients. Patients with kidney disease and their care partners should feel supported to live well through concerted efforts by kidney care communities, including during pandemics. In the overall wellness program for patients with kidney disease, the need for prevention should be reiterated. Early detection with prolonged course of wellness despite kidney disease, after effective secondary and tertiary prevention programs, should be promoted. WKD 2021 continues to call for increased awareness of the importance of preventive measures across populations, professionals, and policy makers, applicable to both developed and developing countries.

Living with CKD is associated with hardships for patients and their care partners. Empowering patients and care partners may help minimize the burden and consequences of CKD-related symptoms to enable life participation. There is a need to broaden the focus on living well with kidney disease and re-engagement in life. The World Kidney Day (WKD) Joint Steering Committee has declared 2021 the year of 'Living Well with Kidney Disease' in an effort to increase education and awareness on the important goal of patient empowerment and life participation. This calls for the development and implementation of validated patient-reported outcome measures to address areas of life participation in routine care. It could be supported by regulatory agencies as a metric for quality care. Funding agencies could establish targeted calls for research that address the priorities of patients. Patients with kidney disease and their care partners should feel supported to live well through concerted efforts by kidney care communities including during pandemics. In the overall wellness programme for kidney disease patients, the need for prevention should be reiterated. WKD 2021 continues to call for increased awareness of the importance of preventive measures throughout populations, professionals and policy makers, applicable to both developed and developing countries.

Symptom-Checker bieten hohes Potenzial, unterschiedlichste Herausforderungen im Gesundheitssystem zu adressieren [1]. Die Anwendungen können zum einen zu einer Effizienzsteigerung in der Arzt-Patienten-Interaktion beitragen. Zum anderen bieten sie eine fundierte Anleitung zum Selbstmanagement von Krankheitssymptomen von zu Hause aus und liefern damit auch einen Ansatzpunkt für die weitere Patientennavigation zu den Versorgungsebenen. Sowohl in der stationären wie auch in der ambulanten Versorgung zeichnet sich eine stetige Verdichtung der Arztzeit pro Patient:in ab. Ebenso wächst der Arbeitsdruck für das Gesundheitspersonal stetig. Aufseiten der Patient:innen wird dies beispielsweise in Form von langen Wartezeiten auf (ambulante) Arzttermine und von nur kurzer Arzt-Patienten Gesprächszeit spürbar [2]. Laut einer Metaanalyse zur ambulanten Grundversorgung liegt die durchschnittliche Dauer eines Arztgesprächs in Deutschland bei 7,6 Minuten [3]. Bei einer Konsultationszeit von etwa sieben Minuten liegt es auf der Hand, dass diese auch so effizient wie möglich genutzt werden muss. Immerhin gilt es, die Darlegung der Symptome, die Untersuchung und Diagnosestellung sowie die Besprechung der Therapieoptionen in diesem engen Zeitfenster unterzubringen.

Abstract Background More knowledge is needed regarding the perceptions of healthcare professionals when encountering empowered patients and informal caregivers in clinical settings. This study aimed to investigate healthcare professionals’ attitudes towards and experiences of working with empowered patients and informal caregivers, and perception of workplace support in these situations. Methods A multi-centre web survey was conducted using a non-probability sampling of both primary and specialized healthcare professionals across Sweden. A total of 279 healthcare professionals completed the survey. Data was analysed using descriptive statistics and Thematic analysis. Results Most respondents perceived empowered patients and informal caregivers as positive and had to some extent experience of learning new knowledge and skills from them. However, few respondents stated that these experiences were regularly followed-up at their workplace. Potentially negative consequences such as increased inequality and additional workload were, however, mentioned. Patients’ engagement in the development of clinical workplaces was seen as positive by the respondents, but few had own experience of such engagement and considered it difficult to be achieved . Conclusion Overall positive attitudes of healthcare professionals are a fundamental prerequisite to the transition of the healthcare system recognizing empowered patients and informal caregivers as partners.

Abstract Background Accessible and high-quality primary health care (PHC) is fundamental to countries moving towards universal health coverage. In order to improve the quality of patient-centered care provided in PHC, a comprehensive understanding of patients’ values is crucial to address any gaps in the health care system. This systematic review aimed to identify patients’ values relevant to PHC. Methods We searched primary qualitative and quantitative studies about patients’ values related to primary care in PubMed and EMBASE (Ovid) from 2009 to 2020. The studies’ quality was assessed using Joanna Briggs Institute (JBI) Critical Appraisal Checklist for both quantitative and qualitative studies and Consolidated Criteria for Reporting Qualitative Studies (COREQ) for qualitative studies. A thematic approach was used in the data synthesis. Outcome The database search resulted in 1,817 articles. A total of 68 articles were full-text screened. Data were extracted from nine quantitative and nine qualitative studies that met the inclusion criteria. The participants of the studies were mainly the general population in high-income countries. Four themes emerged from the analysis: patients’ values related to privacy and autonomy; values associated with the general practitioners including virtuous characteristics, knowledge and competence; values involving patient-doctor interactions such as shared decision-making and empowerment; and core values related to the primary care system such as continuity, referral, and accessibility. Conclusions This review reveals that the doctor’s personal characteristics and their interactions with the patients are critical considerations concerning the primary care services from the patients’ point of view. The inclusion of these values is essential to improve the quality of primary care.

Abstract Background Rare diseases are a particular field of public health that is characterized by scattered, often insufficient knowledge and infrastructure. The scarcity of specialized knowledge often forces clinicians and patients to an incomplete picture of the diseases and their associated risks. Effective person-centred networks appear promising for solving such real world and life-defining problems by purposely sourcing expert knowledge that is geographically-dispersed. The design and implementation of the RARE-e-CONNECT network technology is described. The project was funded to create collaborative spaces for the development of international partnerships in Cyprus’ healthcare, promoting the dissemination of expert knowledge on rare diseases while saving resources through teleconsultation. Parameters that matter for patients, providers and policy-makers through the RARE-e-CONNECT experience were evaluated through a participatory mixed-method approach, consisting of (1) a needs assessment survey with 27 patients/families and 26 healthcare professionals at the two referral hospitals for the diagnosis and management of rare diseases in Cyprus; (2) interviews with 40 patients, families and patient representatives, as well as 37 clinicians and laboratory scientists, including national ERN coordinators/members; (3) activity metrics from 210 healthcare professionals and 251 patients/families/patient representatives who participated on the platform at the time of the research. Results Our results indicate usage and intention by both healthcare professionals and patients/families to openly provide decentralized specialized information for raising suspicion amongst clinicians to facilitate the necessary referrals, as well as peer to peer psychosocial support to help cope with the everyday challenges of living with the disease. User behavior was largely affected by the prevailing social norm favoring individual practice, as well as missing policies for telemedicine and shared care. This article discusses how telehealth is inextricably linked to social, cultural, organizational, technological and policy factors affecting uptake. Conclusions We argue that collective intelligence tools need to be formally considered and work hand in hand with national and European policies/regulatory frameworks to promote proactiveness amongst the healthcare community with regard to the timely diagnosis of rare diseases and the facilitation of patients’ pathway to specialists. Collaborative channels between countries need to be established to source collective intelligence on complex cases and save resources through teleconsultation/telementoring.

Abstract Background Although including patients as full, active members of research teams is becoming more common, there are few accounts about how to do so successfully, and almost none of these are written by patient partners themselves. Three patient partners contributed their lived experience to a three-year, multi-component mental health research project in British Columbia, Canada. As patient partners, we contributed to innovative co-learning in this project, resulting in mutual respect and wide-ranging benefits. To guide future patient partners and researchers seeking patient engagement, we outline the processes that helped our research team ‘get it right’. Main body From the outset, we were integrated into components of the project that we chose: thematically coding a rapid review, developing questions and engagement processes for focus groups, and shaping an economic model. Our level of engagement in each component was determined by us. Additionally, we catalyzed the use of surveys to evaluate our engagement and the perceptions of patient engagement from the wider team. At our request, we had a standing place on each monthly meeting agenda. Importantly, we broke new ground when we moved the team from using previously accepted psychiatric terminology that no longer fit the reality of patients’ experiences. We worked diligently with the team to represent the reality that was appropriate for all parties. The approach taken in this project led to meaningful and successfully integrated patient experiences, fostered a shared understanding, which positively impacted team development and cohesion. The resulting ‘lessons learned’ included engaging early, often, and with respect; carving out and creating a safe place, free from stigma; building trust within the research team; drawing on lived experience; co-creating acceptable terminology; and cultivating inclusivity throughout the entire study. Conclusion We believe that lived experience can and should go hand-in-hand with research, to ensure study outcomes reflect the knowledge of patients themselves. We were willing to share the truth of our lived experience. We were treated as co-researchers. Successful engagement came from the ‘lessons learned’ that can be used by other teams who wish to engage patient partners in health research.

Abstract Background Two most important factors determining treatment success in chronic myeloid leukemia (CML) are adequate medication compliance and molecular monitoring albeit still being suboptimal. The CMyLife platform is an eHealth innovation, co-created with and for CML patients, aiming to improve their care, leading to an increased quality of life and the opportunity of hospital-free care. Objective To explore the effectiveness of CMyLife in terms of information provision, patient empowerment, medication compliance, molecular monitoring, and quality of life. Methods Effectiveness of CMyLife was explored using a patient-preference trial. Upon completion of the baseline questionnaire, participants actively used (intervention group) or did not actively use (questionnaire group) the CMyLife platform for at least 6 months, after which they completed the post-intervention questionnaire. Scores between the intervention group and the questionnaire group were compared with regard to the within-subject change between baseline and post-measurement using Generalized Estimating Equation models. Results At baseline, 33 patients were enrolled in the questionnaire group and 75 in the intervention group. Online health information knowledge improved significantly when actively using CMyLife and patients felt more empowered. No significant improvements were found regarding medication compliance and molecular monitoring, which were already outstanding. Self-reported effectiveness showed that patients experienced that using CMyLife improved their medication compliance and helped them to oversee their molecular monitoring. Patients using CMyLife reported more symptoms but were better able to manage these. Conclusions Since hospital-free care has shown to be feasible in time of the COVID-19 pandemic, eHealth-based innovations such as CMyLife could be a solution to maintain the quality of care and make current oncological health care services more sustainable. Trial registration ClinicalTrials.gov NCT04595955 , 22/10/2020.

Patient empowerment is crucial for promoting and strengthening health. We aimed to assess patient empowerment and diabetes-specific health-related quality of life (HRQoL) in adults with type 2 diabetes (T2D). A multi-centre, cross-sectional survey was conducted among adults with T2D in urban and rural primary care settings in Slovenia between April and September 2023. The survey utilised convenience sampling and included sociodemographic and clinical data, the Diabetes Empowerment Scale (DES), and the Audit of Diabetes-Dependent QoL (ADDQoL). The study included 289 people with T2D and a mean age of 67.2 years (SD 9.2). The mean overall DES score was 3.9/5 (SD 0.4). In a multivariable linear regression model, higher empowerment was significantly associated with residing in a rural region (p = 0.034), higher education (p = 0.028), and a lack of comorbid AH (p = 0.016). The median overall ADDQoL score was −1.2 (IQR [−2.5, −0.6]). The greatest negative influence of diabetes on HRQoL was observed in the domain ‘Freedom to eat’, followed by ‘Freedom to drink’, ‘Leisure activities’, and ‘Holidays’. Despite high empowerment among adults with T2D, the condition still imposes a personal burden. Integrated primary care models should prioritise the importance of implementing targeted interventions to enhance diabetes empowerment, address comorbidities, and improve specific aspects of QoL among individuals with T2D.

Background: The number of children and adolescents with inflammatory bowel disease (IBD) is increasing. Many chronically ill children and adolescents have low health literacy. Patient empowerment (PE) enables positive changes and control over one’s disease through specific activities, information, and counseling. The CEDNA (IBD Needs Assessment) Survey aimed to provide the necessary data to improve PE in pediatric IBD (PIBD). Methods: Questionnaires were distributed to adolescent IBD patients and parents of children and adolescents with IBD throughout Germany. The answers were given anonymously. Based on the available data, a subgroup analysis was conducted in relation to the age of the patients and the period since diagnosis. For the parents’ responses, the same age groups were analyzed for comparison with the patients’ responses. Results: From October 2021 to April 2022, 2810 questionnaires were distributed and 1158 questionnaires were completed (n = 708 parents [61.1%], n = 450 patients [38.9%]). The results indicate that health literacy in children with IBD is low. Significant gaps in knowledge of important IBD topics were identified, and a comparison of responses regarding preferred methods and timing of obtaining information revealed differences between patient and parent preferences. The greatest need for knowledge on IBD topics was found in the group of 16–17-year-old patients on transition (n = 214, 31.8%) and in the group of patients diagnosed 1–2 years ago on the causes of IBD (n = 288, 17.4%). The willingness to seek advice was unexpectedly low. Conclusions: The analysis of all findings according to the patient’s age structure and duration since diagnosis can be used to enable age-appropriate communication at certain stages of the disease. This tailored information should increase patients’ health literacy, improve their management of the disease, and reduce the burden on their families.

The widespread adoption of mobile technologies offers an opportunity for a new approach to post-discharge care for patients with heart failure (HF). By enabling non-invasive remote monitoring and two-way, real-time communication between the clinic and home-based patients, as well as a host of other capabilities, mobile technologies have a potential to significantly improve remote patient care. This literature review summarizes clinical evidence related to virtual healthcare (VHC), defined as a care team + connected devices + a digital solution in post-release care of patients with HF. Searches were conducted on Embase (06/12/2020). A total of 171 studies were included for data extraction and evidence synthesis: 96 studies related to VHC efficacy, and 75 studies related to AI in HF. In addition, 15 publications were included from the search on studies scaling up VHC solutions in HF within the real-world setting. The most successful VHC interventions, as measured by the number of reported significant results, were those targeting reduction in rehospitalization rates. In terms of relative success rate, the two most effective interventions targeted patient self-care and all-cause hospital visits in their primary endpoint. Among the three categories of VHC identified in this review (telemonitoring, remote patient management, and patient self-empowerment) the integrated approach in remote patient management solutions performs the best in decreasing HF patients' re-admission rates and overall hospital visits. Given the increased amount of data generated by VHC technologies, artificial intelligence (AI) is being investigated as a tool to aid decision making in the context of primary diagnostics, identifying disease phenotypes, and predicting treatment outcomes. Currently, most AI algorithms are developed using data gathered in clinic and only a few studies deploy AI in the context of VHC. Most successes have been reported in predicting HF outcomes. Since the field of VHC in HF is relatively new and still in flux, this is not a typical systematic review capturing all published studies within this domain. Although the standard methodology for this type of reviews was followed, the nature of this review is qualitative. The main objective was to summarize the most promising results and identify potential research directions.

Applying health psychological theories can improve communication interventions to empower pregnant women and ensure safe births. The aim was to test a short digital communication intervention based on the health action process approach. A randomized‐controlled trial was conducted with pregnant women at two German university hospitals. The intervention group (NT1 = 225; NT2 = 142) received a 2.5 h online training focusing on communication planning, self‐efficacy and communicating personal needs and preferences under difficult circumstances. This group was compared with a passive control group (NT1 = 199; NT2 = 144). Data from the N = 286 women with complete datasets were used for multilevel analyses. Data from all recruited N = 424 women were used for intention‐to‐treat analyses with multiple imputation. Both groups improved regarding communication behavior, quality of birth, action planning, coping planning and coping self‐efficacy after birth, which was more pronounced in the intervention group. The intention‐to‐treat analyses confirmed the higher improvement for communication behavior, perceived quality of birth and coping planning. The intervention was related to improvements in pregnant women's communication behavior and quality of birth. Hence, future research and practice should apply and evaluate health psychological theories when targeting communication and empowerment. [ABSTRACT FROM AUTHOR]

Parental support is known to enhance the mental health and well-being of trans and gender-diverse (TGD) youth. Little is known about the impact of parental supportiveness on patient empowerment amongst youth seeking medical gender-affirmation. We evaluated the relationship between healthcare empowerment and perceived level of parental support in a sample of 176 TGD youth, ages 14–24, who responded to a healthcare empowerment survey. We used pairwise Chi-squared tests to understand significant associations between empowerment items and a four-point measure of parent supportiveness/unsupportiveness. Youth's sense of control over gender-affirming medical care decreased with decreasing parental support (p < 0.001). Empowerment scores related to knowledge, decision-making, and supporting peers, did not differ between youth with very unsupportive and very supportive parents (p > 0.05). Youth with somewhat unsupportive parents consistently reported the lowest empowerment. This study adds to a body of work that suggests that high parental supportiveness for TGD youth yields positive outcomes. However, additional work is needed to understand the high levels of patient empowerment observed in youth with the most unsupportive caregivers and to explore how healthcare providers/systems can better support youth with somewhat unsupportive parents, who experience the lowest empowerment. Further work with a more nuanced parental support instrument is also warranted. [ABSTRACT FROM AUTHOR]

Objective: This study investigated the effect of social support systems and strengthening approaches on the quality of life in elderly patients. Materials and Methods: This cross-sectional study was conducted with 390 participants above the age of 65 receiving service at the Kayseri State Hospital Geriatric Care Center between September-October 2019. The World Health Organization quality of life scale module and multidimensional scale of perceived social support and the patient perceptions of empowerment scale were used as the data collection tools. The effect of multidimensional scale of perceived social support and the patient perceptions of empowerment scale on the quality of life was tested using structural equation modeling. Results: It was determined that education, income, smoking, and chronic disease were significantly related to the quality of life of the elderly. When the effects of multidimensional scale of perceived social support on the quality of life were modeled, it was determined that social support and patient empowerment influenced the quality of life. In the model, patient empowerment significantly affected the quality of life with a standardized regression coefficient of 0.47 and a patient empowerment scale of 0.59. Conclusion: Patient empowerment level has a significant effect on the quality of life of the elderly, with social support. Patient empowerment is an essential determinant of the quality of life in the elderly. [ABSTRACT FROM AUTHOR]

Germany became the first country to accept certain mobile health (mHealth) apps for prescription with costs covered by statutory health insurance. Yet, this option has only been used to a limited extent. To develop an international comparison, this study investigates GPs' perceptions of mHealth apps with a medical purpose in Germany and Australia. We conducted semi-structured interviews to examine their perspective on introducing and using mHealth apps and their awareness of their impact on patient adherence, empowerment, and health literacy. The results show that prescribing mHealth apps in general practice seems feasible in Australia and doctors are highly receptive to it. [ABSTRACT FROM AUTHOR]

Research on why people use complementary and alternative medicine (CAM) shows clients value the CAM consultation, where they feel listened to and empowered to control their own health. Such 'empowerment' through CAM use is often theorised as reflecting wider neoliberal imperatives of self‐responsibility. CAM users' perspectives are well studied, but there has been little sociological analysis of interactions within the CAM consultation. Specifically, it is unclear how user empowerment/self‐knowledge relates to the CAM practitioner's power and expert knowledge. We address this using audio‐recorded consultations and interviews with CAM practitioners to explore knowledge use in client‐practitioner interactions and its meaning for practitioners. Based on our analysis and drawing on Foucault (1973), The Birth of the Clinic: an archaeology of medical perception and Antonovsky (1979), Health, Stress and Coping, we theorise the operation of power/knowledge in the CAM practitioner‐client dyad by introducing the concept of the 'salutogenic gaze'. This gaze operates in the CAM consultation with disciplining and productive effects that are oriented towards health promotion. Practitioners listen to and value clients' stories, but their gaze also incorporates surveillance and normalisation, aided by technologies that may or may not be shared with clients. Because the salutogenic gaze is ultimately transferred from practitioner to client, it empowers CAM users while simultaneously reinforcing the practitioner's power as a health expert. [ABSTRACT FROM AUTHOR]

Trauma‐informed care has gained increasing popularity in mental health services over the past two decades. Mental health nurses remain one of the largest occupations employed in acute mental health settings and arguably have a critical role in supporting trauma‐informed care in this environment. Despite this, there remains a limited understanding on how trauma‐informed care is applied to the context of mental health nursing in the hospital environment. The aim of this study was to explore what it means for mental health nurses to provide trauma‐informed care in the acute mental health setting. The study design was qualitative, using van Manen's (Researching lived experience: human science for an action sensitive pedagogy. State University of New York Press, 1990) approach to hermeneutic phenomenological inquiry. A total of 29 mental health nurses participated in this study. There were three overarching themes that emerged; these entail: embodied trauma‐informed milieu, trauma‐informed relationality and temporal dimensions of trauma‐informed mental health nursing. The study found that for mental health nurses, there are elements of trauma‐informed care that extend far beyond the routine application of the principles to nursing practice. For mental health nurses working in the acute setting, trauma‐informed care may offer a restorative function in practice back to the core tenants of therapeutic interpersonal dynamics it was once based upon. [ABSTRACT FROM AUTHOR]

BackgroundWhile peritoneal dialysis (PD) can offer patients more independence and flexibility compared with in-center hemodialysis, managing the ongoing and technically demanding regimen can impose a burden on patients and caregivers. Patient empowerment can strengthen capacity for self-management and improve treatment outcomes. We aimed to describe patients' and caregivers' perspectives on the meaning and role of patient empowerment in PD.MethodsAdult patients receiving PD (n = 81) and their caregivers (n = 45), purposively sampled from nine dialysis units in Australia, Hong Kong and the USA, participated in 14 focus groups. Transcripts were thematically analyzed.ResultsWe identified six themes: lacking clarity for self-management (limited understanding of rationale behind necessary restrictions, muddled by conflicting information); PD regimen restricting flexibility and freedom (burden in budgeting time, confined to be close to home); strength with supportive relationships (gaining reassurance with practical assistance, comforted by considerate health professionals, supported by family and friends); defying constraints (reclaiming the day, undeterred by treatment, refusing to be defined by illness); regaining lost vitality (enabling physical functioning, restoring energy for life participation); and personal growth through adjustment (building resilience and enabling positive outlook, accepting the dialysis regimen).ConclusionsUnderstanding the rationale behind lifestyle restrictions, practical assistance and family support in managing PD promoted patient empowerment, whereas being constrained in time and capacity for life participation outside the home undermined it. Education, counseling and strategies to minimize the disruption and burden of PD may enhance satisfaction and outcomes in patients requiring PD.

Psoriasis is a skin condition that affects over 100 million people worldwide, while multiple myeloma (MM) accounts for 10% of all hematologic malignancies in the US. There has been limited research on the intersection of psoriasis and MM, and clinicians often face difficult decisions in treating patients diagnosed with both conditions. For instance, the management of psoriasis with systemic immunotherapies in MM patients can be challenging because of concern about immunosuppression and possible worsening of MM. Online crowdsourcing platforms have recently become innovative tools that can actively empower patients in scientific research by enabling the contribution of health data. One such platform, HealthTree®, helps MM patients find optimal myeloma treatments and has registered > 6000 patients, many of whom have uploaded medical records and genetic profiles. By taking advantage of patient health data available on HealthTree, researchers can gain a greater understanding of the clinical characteristics and treatment responses of patients diagnosed with psoriasis and MM. In this case series, we first report a psoriasis and MM patient treated with the IL-17 inhibitor ixekizumab who demonstrated a temporary, 2-month improvement in MM biomarkers (M-protein, kappa, and kappa:lambda ratio). We then report on the clinical characteristics of 18 patients with verified profiles on HealthTree indicating concurrent psoriasis and MM conditions. We surveyed gender, age, psoriasis type, psoriasis treatment history, myeloma type, myeloma genetic features, and myeloma association with bone damage, hypercalcemia, or osteopenia. Four patients were treated with systemic immunomodulators for psoriasis, with responses suggesting that these therapies did not worsen MM progression. Our results validate crowdsourcing as a way to assess patient demographics and treatment responses for use in dermatology research. We examine the demographics of patients diagnosed with psoriasis and MM and investigate the use of systemic immunomodulators for treatment of psoriasis in MM patients.

Rationale & objectivePersons with chronic kidney disease (CKD) are often unaware of their disease status. Efforts to improve CKD awareness may be most effective if focused on persons at highest risk for progression to kidney failure.Study designSerial cross-sectional surveys.Setting & participantsNonpregnant adults (aged≥20 years) with CKD glomerular filtration rate categories 3-4 (G3-G4) who participated in the National Health and Nutrition Examination Survey from 1999 to 2016 (n = 3,713).Predictor5-year kidney failure risk, estimated using the Kidney Failure Risk Equation. Predicted risk was categorized as minimal (

Abstract Introduction Patient‐centred care (PCC) has come to the forefront for many institutions, funding agencies and clinicians, and is integrated into care. Does a disconnect in understanding still exist between patients, healthcare organizations and clinicians in what PCC means and how outstanding issues might be addressed? Methods We conducted interviews and focus groups with self‐reported chronic care patients and clinicians providing care to these patients exploring PCC experiences, expectations and practices. These data were initially analysed using inductive thematic analysis. This paper reports on the findings of a secondary analysis examining the alignment between patients and clinicians on five key predetermined dimensions of PCC. Results Eighteen patients participated, representing a range of chronic conditions. Thirty‐eight clinicians participated. One thousand and three hundred patient and 1800 clinician codes were identified and grouped into 5 main topics with 140 unique themes (patients) and 9 main topics with 54 unique themes (clinicians). A total of 166 quotes (patient = 93, clinician = 73) were identified for this PCC definition alignment analysis. Partial or complete alignment of patient and clinician perspectives was seen on most dimensions. Key disconnects were observed in patient involvement, patient empowerment and clinician–patient communication. Only 18% of patients reported experiencing patient‐centred communication, whereas 57% of clinicians reported using patient‐focused communication approaches. Conclusion Overall, study patients and clinicians endorse that many PCC elements occur. This study highlights key differences between patients and clinicians, suggesting persistent challenges. Clinician participants relayed their PCC approaches of informing and educating patients; however, patients often perceive these approaches as didactic, role‐diminishing and noncollaborative. Collaborative approaches, such as shared decision‐making, hold promise to bridge persistent PCC gaps and should be integrated into medical education programmes. Patient or Public Contribution This project was conceived and executed with a co‐design approach wherein patients with chronic conditions who are trained in research (i.e., see descriptions of Patient and Community Engagement Research in the text) were involved in all stages of the research project alongside other researchers on the project team. Healthcare providers were involved as participants and as principal investigators in the project.

Abstract People living with rare diseases (PLWRD) still face huge unmet needs, in part due to the fact that care systems are not sufficiently aligned with their needs and healthcare workforce (HWF) along their care pathways lacks competencies to efficiently tackle rare disease-specific challenges. Level of rare disease knowledge and awareness among the current and future HWF is insufficient. In recent years, many educational resources on rare diseases have been developed, however, awareness of these resources is still limited and rare disease education is still not sufficiently taken into account by some crucial stakeholders as academia and professional organizations. Therefore, there is a need to fundamentally rethink rare disease education and HWF development across the whole spectrum from students to generalists, specialists and experts, to engage and empower PLWRD, their families and advocates, and to work towards a common coherent and complementary strategy on rare disease education and training in Europe and beyond. Special consideration should be also given to the role of nurse coordinators in care coordination, interprofessional training for integrated multidisciplinary care, patient and family-centered education, opportunities given by digital learning and fostering of social accountability to enforce the focus on socially-vulnerable groups such as PLWRD. The strategy has to be developed and implemented by multiple rare disease education and training providers: universities, medical and nursing schools and their associations, professional organizations, European Reference Networks, patient organizations, other organizations and institutions dedicated to rare diseases and rare cancers, authorities and policy bodies.

Abstract Background Everybody has the right to decide whether to receive specific medical treatment or not and to provide their free, prior and informed consent to do so. As dementia progresses, people with Alzheimer’s dementia (PwAD) can lose their capacity to provide informed consent to complex medical treatment. When the capacity to consent is lost, the autonomy of the affected person can only be guaranteed when an interpretable and valid advance directive exists. Advance directives are not yet common in Germany, and their validity is often questionable. Once the dementia diagnosis has been made, it is assumed to be too late to write an advance directive. One approach used to support the completion of advance directives is ‘Respecting Choices’®—an internationally recognised, evidence-based model of Advance Care Planning (ACP), which, until now, has not been evaluated for the target group of PwAD. This study’s aims include (a) to investigate the proportion of valid advance directives in a memory clinic population of persons with suspected AD, (b) to determine the predictors of valid advance directives, and (c) to examine whether the offer of ACP can increase the proportion of valid advance directives in PwAD. Method We intend to recruit at least N = 250 participants from two memory clinics in 50 consecutive weeks. Of these, the first 25 weeks constitute the baseline phase (no offer of ACP), the following 25 weeks constitute the intervention phase (offer of ACP). The existence and validity of an advance directive will be assessed twice (before and after the memory clinic appointment). Moreover, potential predictors of valid advance directives are assessed. Discussion The results of this study will enhance the development of consent procedures for advance directives of PwAD based on the ACP/Respecting Choices (R) approach. Therefore, this project contributes towards increasing the autonomy and inclusion of PwAD and the widespread acceptance of valid advance directives in PwAD. Trial Registration DRKS, DRKS00026691, registered 15th of October 2021, https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00026691

Abstract Objective The aim of the present study is to identify factors associated with patient empowerment in people living with type 2 diabetes mellitus (T2DM) in the Canary Islands (Spain). Methods Secondary cross‐sectional analysis was carried out of data obtained in the INDICA study: A 24‐month cluster randomized‐controlled trial evaluating the effectiveness of educational interventions supported by new technology decision tools for T2DM patients. Sociodemographic variables, clinical data (years since diagnosis, glycated haemoglobin level, creatine, triglycerides, waist hip index, body mass index and number of comorbidities), diabetes knowledge (DIATEK), affective outcomes (Beck Depression Inventory‐II, the State subscale of the State‐Trait Anxiety Inventory and The Diabetes Distress Scale) and diabetes‐related quality of life (The Audit of Diabetes‐Dependent Quality of life) were assessed as potential correlates of patient empowerment, assessed using the Diabetes Empowerment Scale‐Short Form. Multilevel mixed linear regression models on patient empowerment were developed. Results The analysis included the baseline data of 2334 patients. Results showed that age (B = −0.14; p

Abstract Background Hypertension and diabetes are chronic noncommunicable diseases ranked among the leading causes of morbidity and mortality in resource-limited settings. Interventions based on patient empowerment (PE) have been shown to be effective in the management of these diseases by improving a variety of important health outcomes. This study aims to examine from the healthcare providers’ and policymakers’ experiences and perspectives, the facilitators and barriers in the management of hypertension and diabetes for patient empowerment to achieve better health outcomes in the context of the healthcare system in Cameroon. Methods We carried out a qualitative study involving three levels of embedded analysis in a public primary healthcare delivery system in Cameroon, through 22 semi-structural interviews with healthcare providers and policymakers and 36 observations of physicians’ consultations. We combined thematic and lexicometric analyses to identify robust patterns of differences and similarities in the experiences and perspectives of healthcare providers and policymakers about direct and indirect factors associated with patients’ self-management of disease. Results We identified 89 barriers and 42 facilitators at the central, organizational, and individual levels; they were preponderant at the organizational level. Factors identified by healthcare providers mainly related to self-management of the disease at the organizational and individual levels, whereas policymakers reported factors chiefly at the central and organizational levels. Healthcare providers involved in the decision-making process for the delivery of healthcare tended to have a sense of ownership and responsibility over what they were doing to help patients develop self-management abilities to control their disease. Conclusion While interventions focused on improving patient-level factors are essential to PE, there is a need for interventions paying more attention to organizational and political barriers to PE than so far. Interventions targeting simultaneously these multilevel factors may be more effective than single-level interventions.

Abstract Background Noncommunicable diseases like hypertension and diabetes require long-term management, and are financially draining for patients and their families bearing the treatment costs, especially in settings where the inadequacy or non-existence of the health insurance system prevails. Patient empowerment-focused interventions have been shown to improve adherence to therapeutic regimens and decrease unnecessary health care utilization and costs. This study aims to examine enabling and impeding factors to the development of patient empowerment in a resource-limited setting like Cameroon. Methods We used qualitative methods entailing three levels of investigation and involving a public primary healthcare hospital in Yaoundé, Cameroon. Data were collected through 40 semi-structural interviews with patients having hypertension or diabetes and their family caregivers, one focus group discussion with six patients, 29 observations of consultations of patients by specialist physicians, seven observations of care received by inpatients from generalist physicians, and nine documents on the management of hypertension or diabetes. A novel approach combining thematic and lexicometric analyses was used to identify similarities and differences in barriers and facilitators associated with patient empowerment at different levels of the healthcare delivery system in Cameroon. Results Barriers generally outnumbered facilitators. There were particularities as well as commonalities in reported facilitators and barriers linked to patient empowerment from different experiences and perspectives of outpatients, inpatients and their family caregivers, given the healthcare services and organization of health personal and resources that deliver healthcare services to meet the health needs of patients with hypertension or diabetes in Cameroon. While specific factors identified by patients were directly related to the self-management of their disease at the individual level, family caregivers were mainly focused on factors present at organizational and central levels, which are indirectly related to the management of the diseases and beyond the control of patients and families. Conclusions The preponderance of individual-level factors linked to patient empowerment more than those at the central and hospital/organizational levels calls for due attention to them in the multilevel design and implementation of patient empowerment interventions in resource-limited settings like Cameroon. Accounting for patient’s and families’ perspectives and opinions may be key to improving healthcare delivery.

Abstract Background Patient empowerment is associated with improvements in different patient-reported and clinical outcomes. However, despite being widely researched, high quality and theoretically substantiated disease-generic measures of patient empowerment are lacking. The few good instruments that are available have not reported important psychometric properties, including measurement invariance. The aim of this study was to assess the psychometric properties of the 15-item Gothenburg Empowerment Scale (GES), with a particular focus on measurement invariance of the GES across individuals from three countries. Methods Adults with congenital heart disease from Belgium, Norway and South Korea completed the GES and other patient-reported outcomes as part of an international, cross-sectional, descriptive study called APPROACH-IS II. The scale’s content (missing data) and factorial validity (confirmatory factor analyses), measurement invariance (multi-group confirmatory factor analyses), responsiveness (floor and ceiling effects) and reliability (internal consistency) were assessed. Results Content validity, responsiveness and reliability were confirmed. Nonetheless, metric but not scalar measurement invariance was supported when including the three countries, possibly because the scale performed differently in the sample from South Korea. A second set of analyses supported partial scalar invariance for a sample that was limited to Norway and Belgium. Conclusion Our study offers preliminary evidence that GES is a valid and reliable measure of patient empowerment in adults with congenital heart disease. However, cross-country comparisons must be made with caution, given the scale did not perform equivalently across the three countries.

Background and aim: The BRASA patient decision aid (BRASA-PtDA) facilitates shared decision making for breast cancer patients (BCPs) facing a radiotherapy treatment decision. During evaluations, patients indicated the wish for quantitative information on side effects. Therefore, this study assessed BCPs opinion on which and how information on side effects should be incorporated in the BRASA-PtDA. Methods: A workshop was organized with BCPs (n = 9), researchers (n = 5) and clinicians (n = 3). Subsequently, a survey was sent to BCPs (n = 744) investigating the generalisability of the workshop findings, and posing additional questions. The survey entailed multiple choice questions on quality of life themes, the use of a decision aid and risk communication. Results: The workshop revealed BCPs wish for a layered, all encompassing information system. Information on the impact of side effects on daily life was preferred above the risk of these side effects. The survey revealed that important quality of life (QoL) themes were having energy (81%; n = 605), arm function (61%; n = 452), pain (55%; n = 410). Despite the focus on qualitative effects in the workshop, 89% of the survey respondents also wanted to be informed on individualized risks of side effects. 54% Of the survey respondents had never heard of a PtDA. Conclusions: BCPs preferred information on the impact of side effects, but also their individualized risks on side effects. Most important QoL themes were having enough energy, arm function and pain. Consequently, the BRASA-PtDA should be reshaped, starting with quality of life themes, rather than side effects.

Rebecca Campbell-Montalvo,1,2 Huanguang Jia,2 Ashutosh M Shukla2,3 1Department of Curriculum and Instruction, Neag School of Education, University of Connecticut, Storrs, CT, USA; 2Department of Medicine, North Florida/South Georgia Veteran Healthcare System, Gainesville, FL, USA; 3Division of Nephrology, Hypertension and Transplantation, Department of Medicine, University of Florida, Gainesville, FL, USACorrespondence: Ashutosh M Shukla, North Florida South Georgia Veteran Healthcare System, Division of Nephrology, Hypertension and Transplantation, University of Florida, 1600 Archer Road, Gainesville, FL, 32610, USA, Tel +1 352-273-8821, Fax +1 352-392-5465, Email Ashutosh.Shukla@medicine.ufl.eduAbstract: It has been widely demonstrated that patient education and empowerment, especially involving shared treatment decisions, improve patient outcomes in chronic medical conditions, including chronic kidney disease requiring kidney replacement therapies. Accordingly, regulatory agencies in the US and worldwide recommend shared decision-making for finalizing one’s choice of kidney replacement therapy. It is also recognized that the US needs to substantially increase home dialysis utilization to leverage its positive impacts on patient and healthcare cost-related outcomes. This perspective highlights how the routine clinical use of the recommended practice of shared decision-making can exist in synergy with the system’s goal for increased home dialysis use. It introduces a pragmatic provider checklist, The Nephrologist’s Shared Decision-Making Checklist, grounded in the relevant theories of shared decision-making, and, unlike some research assessments and extant tools, is easy to understand and implement in clinical practice. This qualitative Checklist can help providers ensure that they have co-constructed an SDM experience with the patient and involved caretakers, helping them benefit from the improved outcomes associated with SDM.Keywords: shared decision-making, informed decision-making, kidney failure, end-stage renal disease, home dialysis, patient engagement, patient empowerment

Abstract Background Patients as active partners in their personal healthcare are key drivers to reducing costs, securing an effective usage of resources, and ensuring patient-provider satisfaction. Even though these benefits are acknowledged, a theoretical framework for the plethora of concepts used in this context, such as patient engagement, patient empowerment, or patient involvement is missing. Furthermore, the heterogeneous or synonymous usage of these terms leads to miscommunication, missing standard conceptual measures, and a deficiency in theory building and testing. Our objective is to show what the relationships and distinctions between concepts focussing on patients as active partners in their personal healthcare are. Methods A systematic literature review was conducted to consolidate terms related to patients’ having an active role in their healthcare. From 442 articles screened in PubMed, a final set of 17 papers was included. Any articles conceptualising or presenting relationships between the concepts were included. Information was synthesised, and contradictions were unravelled systematically. The concepts and their relationships are structured and represented by employing a concept map. Results Patient-centredness is a concept dominantly influenced by health care providers and can enhance patients’ competencies, attitudes, and behaviours towards their personal healthcare. Enabling patients to become more empowered can ultimately lead to their greater involvement and engagement. Fostering an active role of patients can also increase their adherence to the care pathway. In general, patient engagement seems to be the most conclusive and furthest developed concept in terms of turning patients into active partners in their personal healthcare. Conclusions We plead for a stricter demarcation and therefore a terminological standardisation of the terms in the future to avoid further ambiguity and miscommunication. The concept map presents a basis for a uniform understanding and application of the concepts. Through a comprehensive understanding of the terms and their dimensions, relationships between the concepts can be utilised, measures can be derived, and theory building and testing can be enhanced, leading to better acceptance and utilisation of concepts in healthcare services. Furthermore, patient engagement is presented to be the most conclusive and furthest developed concept in the subject area.

China has long been suffering from the problem of having health care that is expensive and difficult to access. Online patient–provider communication (OPPC) can offer a viable channel to increase access to care. However, through what underlying mechanisms OPPC can be associated with better health outcome is under-researched. To fill this research gap, this study investigated OPPC usage in China and identified psychological processes linking OPPC to emotional well-being. With two-wave panel surveys conducted in China, we found that mobile health app, social media, and health information service website were three common platforms for OPPC, followed by patient portal, whereas e-mail was used least frequently. Overall, OPPC did not have any direct effect on emotional well-being. Instead, OPPC first increased users' perceived social presence of providers in OPPC, which in turn triggered sense of patient empowerment, which finally enhanced emotional well-being. [ABSTRACT FROM AUTHOR]

• Childbearing age women with epilepsy (WWE) are at increased risk to epilepsy harm. • The free EpSMon mobile-phone app allows self-monitoring of seizure related risks. • This is a 5 year prospective real-world cohort study of 2158 WWE accessing EpSMon. • The baseline awareness to risks is low suggesting current clinical models are failing. • Repeated EpSMon use increased SUDEP awareness but not pregnancy related epilepsy risk. Women with epilepsy (WWE) are vulnerable in pregnancy, with increased risks to mother and baby including teratogenic risks, especially from valproate. The free EpSMon mobile-phone app allows self-monitoring to afford patient-centred feedback on seizure related risks, such as sudden death in epilepsy (SUDEP) to its users. We sought to generate insights into various seizure related risks and its treatments in WWE of childbearing age (16 to 60 years) using EpSMon. The study utilizes a prospective real-world cohort of 5.5 years. Patient reported data on demographics, medication taken, diagnoses, seizure types and recognised biological, psychological, and social factors of seizure related harm were extracted. Data was stratified according to frequent and infrequent users and those scoring lower and higher risk scores. Multivariate logistic regression and different statistical tests were conducted. Data from 2158 WWE of childbearing age encompassing 4016 self-assessments were analysed. Overall risk awareness was 25.3% for pregnancy and 54.1% for SUDEP. Frequent users were more aware of pregnancy risks but not of SUDEP. Repeated EpSMon use increased SUDEP awareness but not pregnancy risks. Valproate was used by 11% of WWE, ranging from 6.5% of younger to 31.5% of older women. The awareness to risks to pregnancy, SUDEP and valproate is low. Valproate is being used by a significant minority. It is imperative risk communication continues for WWE based on their individual situation and need. This is unlikely to be delivered by current clinical models. Digital solutions hold promise but require work done to raise implementation and acceptability. [ABSTRACT FROM AUTHOR]

Introduction: Patients are increasingly turning to other sources for their health information. Social media has become mainstream, and the easy access to online communities, health professionals, and shared experiences of other patients has made social media a place where many patients turn to. Methods: In this qualitative report, 2 patients who have had breast cancer describe the reasons why they use social media, what they perceive the advantages and disadvantages are, and what the impact of social media has been through their cancer treatment and beyond. Results: The reasons why patients turn to social media are varied. These can include information gathering, peer support, shared experiences, and advocacy. There appear to be advantages and disadvantages; however, overall, the impact seems to be a positive one when used judiciously. Discussion: It is clear that social media has a role to play in healthcare, whether by providing meaningful social connections, delivery of information, or psychological support. Healthcare professionals perhaps should consider the importance of social media in their practice. [ABSTRACT FROM AUTHOR]

Background: Rare diseases are a particular field of public health that is characterized by scattered, often insufficient knowledge and infrastructure. The scarcity of specialized knowledge often forces clinicians and patients to an incomplete picture of the diseases and their associated risks. Effective person-centred networks appear promising for solving such real world and life-defining problems by purposely sourcing expert knowledge that is geographically-dispersed. The design and implementation of the RARE-e-CONNECT network technology is described. The project was funded to create collaborative spaces for the development of international partnerships in Cyprus' healthcare, promoting the dissemination of expert knowledge on rare diseases while saving resources through teleconsultation. Parameters that matter for patients, providers and policy-makers through the RARE-e-CONNECT experience were evaluated through a participatory mixed-method approach, consisting of (1) a needs assessment survey with 27 patients/families and 26 healthcare professionals at the two referral hospitals for the diagnosis and management of rare diseases in Cyprus; (2) interviews with 40 patients, families and patient representatives, as well as 37 clinicians and laboratory scientists, including national ERN coordinators/members; (3) activity metrics from 210 healthcare professionals and 251 patients/families/patient representatives who participated on the platform at the time of the research. Results: Our results indicate usage and intention by both healthcare professionals and patients/families to openly provide decentralized specialized information for raising suspicion amongst clinicians to facilitate the necessary referrals, as well as peer to peer psychosocial support to help cope with the everyday challenges of living with the disease. User behavior was largely affected by the prevailing social norm favoring individual practice, as well as missing policies for telemedicine and shared care. This article discusses how telehealth is inextricably linked to social, cultural, organizational, technological and policy factors affecting uptake. Conclusions: We argue that collective intelligence tools need to be formally considered and work hand in hand with national and European policies/regulatory frameworks to promote proactiveness amongst the healthcare community with regard to the timely diagnosis of rare diseases and the facilitation of patients' pathway to specialists. Collaborative channels between countries need to be established to source collective intelligence on complex cases and save resources through teleconsultation/telementoring. [ABSTRACT FROM AUTHOR]

Background: The UN Convention on the Rights of Persons with Disabilities, and the reformed guardianship law in Germany, require that persons with a disability, including people with dementia in Alzheimer's disease (PwAD), are supported in making self-determined decisions. This support is achieved through communication. While content-related communication is a deficit of PwAD, relational aspects of communication are a resource. Research in supported decision-making (SDM) has investigated the effectiveness of different content-related support strategies for PwAD but has only succeeded in improving understanding, which, although one criterion of capacity to consent, is not sufficient to ensure overall capacity to consent. The aim of the 'spatial intervention study' of the DECIDE project is to examine an innovative resource-oriented SDM approach that focuses on relational aspects. We hypothesise that talking to PwAD in their familiar home setting (as opposed to a clinical setting) will reduce the complexity of the decision-making process and enhance overall capacity to consent. Methods: People with a suspected or confirmed diagnosis of dementia in Alzheimer's disease will be recruited from two memory clinics (N = 80). We will use a randomised crossover design to investigate the intervention effect of the decision-making place on capacity to consent. Besides reasoning capacity, which is part of overall capacity to consent and will be the primary outcome, various secondary outcomes (e.g., other aspects of capacity to consent, subjective task complexity, decisional conflict) and suspected moderating or mediating variables (e.g., meaning of home, demographic characteristics) will be assessed. Discussion: The results of the study will be used to develop a new SDM strategy that is based on relational resources for PwAD. If a change in location achieves the anticipated improvement in capacity to consent, future research should focus on implementing this SDM strategy in a cost-effective manner in clinical practice. Trial registration: DRKS00030799. [ABSTRACT FROM AUTHOR]

Background: More knowledge is needed regarding the perceptions of healthcare professionals when encountering empowered patients and informal caregivers in clinical settings. This study aimed to investigate healthcare professionals' attitudes towards and experiences of working with empowered patients and informal caregivers, and perception of workplace support in these situations. Methods: A multi-centre web survey was conducted using a non-probability sampling of both primary and specialized healthcare professionals across Sweden. A total of 279 healthcare professionals completed the survey. Data was analysed using descriptive statistics and Thematic analysis. Results: Most respondents perceived empowered patients and informal caregivers as positive and had to some extent experience of learning new knowledge and skills from them. However, few respondents stated that these experiences were regularly followed-up at their workplace. Potentially negative consequences such as increased inequality and additional workload were, however, mentioned. Patients' engagement in the development of clinical workplaces was seen as positive by the respondents, but few had own experience of such engagement and considered it difficult to be achieved. Conclusion: Overall positive attitudes of healthcare professionals are a fundamental prerequisite to the transition of the healthcare system recognizing empowered patients and informal caregivers as partners. [ABSTRACT FROM AUTHOR]

Background: Accessible and high-quality primary health care (PHC) is fundamental to countries moving towards universal health coverage. In order to improve the quality of patient-centered care provided in PHC, a comprehensive understanding of patients' values is crucial to address any gaps in the health care system. This systematic review aimed to identify patients' values relevant to PHC. Methods: We searched primary qualitative and quantitative studies about patients' values related to primary care in PubMed and EMBASE (Ovid) from 2009 to 2020. The studies' quality was assessed using Joanna Briggs Institute (JBI) Critical Appraisal Checklist for both quantitative and qualitative studies and Consolidated Criteria for Reporting Qualitative Studies (COREQ) for qualitative studies. A thematic approach was used in the data synthesis. Outcome: The database search resulted in 1,817 articles. A total of 68 articles were full-text screened. Data were extracted from nine quantitative and nine qualitative studies that met the inclusion criteria. The participants of the studies were mainly the general population in high-income countries. Four themes emerged from the analysis: patients' values related to privacy and autonomy; values associated with the general practitioners including virtuous characteristics, knowledge and competence; values involving patient-doctor interactions such as shared decision-making and empowerment; and core values related to the primary care system such as continuity, referral, and accessibility. Conclusions: This review reveals that the doctor's personal characteristics and their interactions with the patients are critical considerations concerning the primary care services from the patients' point of view. The inclusion of these values is essential to improve the quality of primary care. [ABSTRACT FROM AUTHOR]

Background: Although including patients as full, active members of research teams is becoming more common, there are few accounts about how to do so successfully, and almost none of these are written by patient partners themselves. Three patient partners contributed their lived experience to a three-year, multi-component mental health research project in British Columbia, Canada. As patient partners, we contributed to innovative co-learning in this project, resulting in mutual respect and wide-ranging benefits. To guide future patient partners and researchers seeking patient engagement, we outline the processes that helped our research team 'get it right'. Main body: From the outset, we were integrated into components of the project that we chose: thematically coding a rapid review, developing questions and engagement processes for focus groups, and shaping an economic model. Our level of engagement in each component was determined by us. Additionally, we catalyzed the use of surveys to evaluate our engagement and the perceptions of patient engagement from the wider team. At our request, we had a standing place on each monthly meeting agenda. Importantly, we broke new ground when we moved the team from using previously accepted psychiatric terminology that no longer fit the reality of patients' experiences. We worked diligently with the team to represent the reality that was appropriate for all parties. The approach taken in this project led to meaningful and successfully integrated patient experiences, fostered a shared understanding, which positively impacted team development and cohesion. The resulting 'lessons learned' included engaging early, often, and with respect; carving out and creating a safe place, free from stigma; building trust within the research team; drawing on lived experience; co-creating acceptable terminology; and cultivating inclusivity throughout the entire study. Conclusion: We believe that lived experience can and should go hand-in-hand with research, to ensure study outcomes reflect the knowledge of patients themselves. We were willing to share the truth of our lived experience. We were treated as co-researchers. Successful engagement came from the 'lessons learned' that can be used by other teams who wish to engage patient partners in health research. Plain English summary: Although including patients as members of research teams is becoming more common, there is little information about how to do this successfully. There are even fewer accounts written by patient partners themselves. We argue that successful patient engagement accepts and celebrates the patient partner experience. In this article, we reflect on and share our experiences as patient partners in a Canadian mental health research project. Early on in the project, we were asked to choose which streams of work we would like to work on. In addition, we helped develop surveys about patient engagement in the project. We also had time set aside at each meeting for patient updates. Importantly, we steered the team towards using different mental health terms because they had less stigma and better fit patients' experiences. We offer the following 'lessons learned' about how to engage patients successfully in mental health research, but they are also likely to apply to most health research studies: (1) Engage Early, Often, and with Respect; (2) Carve out and Create a Safe Place; (3) Draw on Lived Experience; (4) Build Trust in the Research Team; (5) Listen, Learn, then Find a New Language; and (6) Cultivate Inclusion Throughout the Project. We believe that the lived experience of patients can and should go hand-in-hand with research. This helps to make sure that the research findings reflect the actual experiences and knowledge of patients. We hope that this article will be a useful guide to other patients and researchers. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To understand the process of using service-user narratives to improve care • To recognise the potential benefits and issues associated with the use of service-user narratives • To contribute towards revalidation as part of your 35 hours of CPD (UK readers) • To contribute towards your professional development and local registration renewal requirements (non-UK readers) A narrative is a constructed story that people use to explain events and their responses to them. Understanding service-user narratives is important for improving their access to healthcare services and for personalising their care. This article offers an overview of narratives, describing the process of exploring service users' narratives (exploration), defining the challenges they may be facing (challenge clarification) and supporting them to formulate new narratives to manage these challenges (new narrative formulation). The author uses a case study about a person with a learning disability to illustrate and explain these concepts. [ABSTRACT FROM AUTHOR]

Individuals with mental illness often face barriers to voting. One of the primary barriers is not being registered to vote. This paper describes voter support activities (VSAs) provided to hospitalized adults on the acute inpatient psychiatric units at Pennsylvania Psychiatric Institute. During the six weeks preceding the 2020 general election, adult inpatients were offered six VSAs and an optional survey examining previous voting behaviors and barriers encountered to voting. VSAs included checking voter registration status and polling location, completing a paper or electronic voter registration application, and requesting a mail-in ballot. Of 189 patients approached, 119 individuals participated in the survey and 60 individuals utilized at least one VSA. This project demonstrates that VSAs are a welcome and feasible resource for psychiatrically hospitalized adults. Psychiatric providers can serve an important role in promoting access to voting-related activities for their patients. [ABSTRACT FROM AUTHOR]