Learning together for better health using an evidence-based Learning Health System framework: a case study in stroke.

BACKGROUND: In the context of expanding digital health tools, the health system is ready for Learning Health System (LHS) models. These models, with proper governance and stakeholder engagement, enable the integration of digital infrastructure to provide feedback to all relevant parties including clinicians and consumers on performance against best practice standards, as well as fostering innovation and aligning healthcare with patient needs. The LHS literature primarily includes opinion or consensus-based frameworks and lacks validation or evidence of benefit. Our aim was to outline a rigorously codesigned, evidence-based LHS framework and present a national case study of an LHS-aligned national stroke program that has delivered clinical benefit. MAIN TEXT: Current core components of a LHS involve capturing evidence from communities and stakeholders (quadrant 1), integrating evidence from research findings (quadrant 2), leveraging evidence from data and practice (quadrant 3), and generating evidence from implementation (quadrant 4) for iterative system-level improvement. The Australian Stroke program was selected as the case study as it provides an exemplar of how an iterative LHS works in practice at a national level encompassing and integrating evidence from all four LHS quadrants. Using this case study, we demonstrate how to apply evidence-based processes to healthcare improvement and embed real-world research for optimising healthcare improvement. We emphasize the transition from research as an endpoint, to research as an enabler and a solution for impact in healthcare improvement. CONCLUSIONS: The Australian Stroke program has nationally improved stroke care since 2007, showcasing the value of integrated LHS-aligned approaches for tangible impact on outcomes. This LHS case study is a practical example for other health conditions and settings to follow suit.

Feasibility and potential effectiveness of nurse-led video-coaching interventions for childhood, adolescent, and young adult cancer survivors: the REVIVER study.

BACKGROUND: Childhood, adolescent, and young adult (CAYA) cancer survivors, at risk for late effects, including cancer-related fatigue, cardiovascular issues, and psychosocial challenges, may benefit from interventions stimulating behaviour adjustments. Three nurse-led eHealth interventions (REVIVER) delivered via video calls and elaborating on person-centred care, cognitive behaviour therapy and/or motivational interviewing were developed. These interventions target: 1) fatigue management, 2) healthier lifestyle behaviours, and 3) self-efficacy and self-management. This study aimed to assess the feasibility and potential effectiveness of the REVIVER interventions for CAYA cancer survivors and healthcare professionals. METHODS: In a single-group mixed methods design, CAYA cancer survivors aged 16-54, more than five years post-treatment, were enrolled. Feasibility, assessed via Bowen's outcomes for feasibility studies, included acceptability, practicality, integration and implementation, demand and adherence. Qualitative data from semi-structured interviews and a focus group interview with survivors and healthcare professionals supplemented the evaluation. Paired sample t-tests assessed changes in self-reported quality of life, fatigue, lifestyle, self-management, and self-efficacy at baseline (T0), post-intervention (T1), and 6-month follow-up (T2). RESULTS: The interventions and video consults were generally acceptable, practical, and successfully integrated and implemented. Success factors included the nurse consultant (i.e., communication, approach, and attitude) and the personalised approach. Barriers included sustainability concerns, technical issues, and short intervention duration. Regarding demand, 71.4%, 65.4%, and 100% of eligible CAYA cancer survivors engaged in the fatigue (N = 15), lifestyle (N = 17) and empowerment (N = 3) intervention, respectively, with 5, 5 and 2 participants interviewed, correspondingly. Low interest (demand) in the empowerment intervention (N = 3) and dropout rates of one-third for both fatigue and empowerment interventions were noted (adherence). Improvements in quality of life, fatigue (fatigue intervention), lifestyle (lifestyle intervention), self-efficacy, and self-management were evident among survivors who completed the fatigue and lifestyle interventions, with medium and large effect sizes observed immediately after the intervention and six months post-intervention. CONCLUSIONS: Our study demonstrates the feasibility of nurse-led video coaching (REVIVER interventions) despite lower demand for the empowerment intervention and lower adherence to the fatigue and empowerment interventions. The medium and high effect sizes found for those who completed the interventions hold potential clinical significance for future studies investigating the effectiveness of the REVIVER interventions.

Standardising personalised diabetes care across European health settings: A person-centred outcome set agreed in a multinational Delphi study.

OBJECTIVE: Standardised person-reported outcomes (PRO) data can contextualise clinical outcomes enabling precision diabetes monitoring and care. Comprehensive outcome sets can guide this process, but their implementation in routine diabetes care has remained challenging and unsuccessful at international level. We aimed to address this by developing a person-centred outcome set for Type 1 and Type 2 diabetes, using a methodology with prospects for increased implementability and sustainability in international health settings. METHODS: We used a three-round questionnaire-based Delphi study to reach consensus on the outcome set. We invited key stakeholders from 19 countries via purposive snowball sampling, namely people with diabetes (N = 94), healthcare professionals (N = 65), industry (N = 22) and health authorities (N = 3), to vote on the relevance and measurement frequency of 64 previously identified clinical and person-reported outcomes. Subsequent consensus meetings concluded the study. RESULTS: The list of preliminary outcomes was shortlisted via the consensus process to 46 outcomes (27 clinical outcomes and 19 PROs). Two main collection times were recommended: (1) linked to a medical visit (e.g. diabetes-specific well-being, symptoms and psychological health) and (2) annually (e.g. clinical data, general well-being and diabetes self management-related outcomes). CONCLUSIONS: PROs are often considered in a non-standardised way in routine diabetes care. We propose a person-centred outcome set for diabetes, specifically considering psychosocial and behavioural aspects, which was agreed by four international key stakeholder groups. It guides standardised collection of meaningful outcomes at scale, supporting individual and population level healthcare decision making. It will be implemented and tested in Europe as part of the H2O project.

Finding the balance between person-centred and treatment-centred discussions in advance care planning-a qualitative analysis of conversations within the MUTUAL (Multidisciplinary Timely Undertaken Advance Care Planning conversations) intervention using a narrative analysis.

INTRODUCTION: Advance care planning (ACP) aims to create conditions for more person-centred care. We aimed to explore variations in person-centred care discussions and treatment-centred care discussions within ACP conversations in the Multidisciplinary Timely Undertaken Advance Care Planning (MUTUAL) intervention and how person-centred care discussions could be encouraged. The MUTUAL intervention consists of the following: (i) timely patient selection, (ii) the patient and healthcare professionals preparing for the conversation, (iii) a scripted ACP conversation in a multidisciplinary setting and (iv) documentation. METHODS: We conducted a narrative analysis of ACP conversations. A narrative summary template was created and used to analyse 18 audio-recordings. RESULTS: We noticed variations in person-centred and treatment-centred focus within the ACP conversations. We identified three important strategies that facilitated person-centred care discussions within ACP conversations. First, healthcare professionals' acceptance that ACP is an individual process. We believe it is important that healthcare professionals recognise and accept where the patient is in his or her individual ACP process; not making decisions right away can also be part of a decisional process. Secondly, exploring the underlying motivation for treatment wishes can give insights into patient's wishes, values and needs. Lastly, healthcare professionals who demonstrated an adaptive, curious and engaged attitude throughout the ACP process achieved more person-centred ACP conversations. This coincided with elaborating on the patient's emotions, fears and worries. CONCLUSION: Person-centred and treatment-centred focus varied within the ACP conversations in the MUTUAL intervention. Certain strategies by healthcare professionals facilitated a more person-centred focus.

Effect of a person-centred goals-of-care form and clinical communication training on shared decision-making and outcomes in an acute hospital: a prospective longitudinal interventional study.

BACKGROUND: Patients with a life-limiting illness (LLI) requiring hospitalisation have a high likelihood of deterioration and 12-month mortality. To avoid non-aligned care, we need to understand our patients' goals and values. AIM: To describe the association between the implementation of a shared decision-making (SDM) programme and documentation of goals of care (GoC) for hospitalised patients with LLI. METHODS: A prospective longitudinal interventional study of patients admitted to acute general medicine wards in an Australian tertiary hospital over 5 years was conducted. A SDM programme with a new GoC form, communication training and clinical support was implemented. The primary outcome was the proportion of patients with a documented person-centred GoC discussion (PCD). Clinical outcomes included hospital utilisation and 90-day mortality. RESULTS: 1343 patients were included. The proportion of patients with PCDs increased from 0% to 35.4% (adjusted odds ratio (aOR), 2.38; 95% confidence interval (CI), 2.01-2.82; P < 0.001). During this time, median hospital length of stay decreased from 8 days (interquartile range (IQR), 4-14) to 6 days (IQR, 3-11) (adjusted estimate effect, -0.38; 95% CI, -0.64 to -0.11; P = 0.005) and rapid response team activation from 28% to 13% (aOR, 0.87; 95% CI, 0.78-0.97; P value = 0.01). Documented treatment preference of high-dependency unit care decreased from 39.7% to 24.4% (aOR, 0.81; 95% CI, 0.73-0.89; P value < 0.001), and ward-based care increased from 31.9% to 55.1% (aOR, 1.24; 95% CI, 1.14-1.36; P value < 0.001). CONCLUSION: The implementation of a SDM programme was associated with increased documentation of person-centred GoC, changed patient treatment preference to lower intensity care and reduced hospital utilisation.

Perceived weight stigma in healthcare settings among adults living with obesity: A cross-sectional investigation of the relationship with patient characteristics and person-centred care.

INTRODUCTION: Patients living with obesity often experience weight stigma in healthcare settings, which has worrying consequences for their healthcare experiences. This cross-sectional study aimed to: (1) provide an overview of stigmatising experiences in healthcare settings reported by adults living with varying classes of obesity, (2) identify associations among patient characteristics and perceived weight stigma and (3) investigate the association between perceived weight stigma and person-centred care (PCC). METHODS: Dutch adults living with obesity classes I (body mass index [BMI]: 30 to <35 kg/m2; n = 426), II (BMI: 35 to <40 kg/m2; n = 124) and III (BMI: ≥40 kg/m2; n = 40) completed measures of perceived weight stigma in healthcare settings and PCC. Descriptive, correlational and multivariate analyses were conducted. RESULTS: Of patients living with classes I, II and III obesity, 41%, 59% and 80%, respectively reported experiences of weight stigma in healthcare settings. Younger age, greater obesity severity and the presence of chronic illnesses were associated with greater perceived weight stigma. Greater perceived weight stigma was associated with lower PCC. CONCLUSION: The results of this study emphasise the significant role of weight stigma in the healthcare experiences of patients living with obesity. Reducing weight stigma is expected to improve PCC and the overall quality of care for these patients. Minimising weight stigma will require efforts across various healthcare domains, including increasing awareness among healthcare professionals about sensitive communication in weight-related discussions. PATIENT CONTRIBUTION: Our sample consisted of patients living with obesity. Additionally, patients were involved in the pilot testing and refinement of the PCC instrument.

Supported decision-making interventions in mental healthcare: A systematic review of current evidence and implementation barriers.

BACKGROUND: There is a growing momentum around the world to foster greater opportunities for the involvement of mental health service users in their care and treatment planning. In-principle support for this aim is widespread across mental healthcare professionals. Yet, progress in mental health services towards this objective has lagged in practice. OBJECTIVES: We conducted a systematic review of quantitative, qualitative and mixed-method research on interventions to improve opportunities for the involvement of mental healthcare service users in treatment planning, to understand the current research evidence and the barriers to implementation. METHODS: Seven databases were searched and 5137 articles were screened. Articles were included if they reported on an intervention for adult service users, were published between 2008 and October 2023 and were in English. Evidence in the 140 included articles was synthesised according to the JBI guidance on Mixed Methods Systematic Reviews. RESULTS: Research in this field remains exploratory in nature, with a wide range of interventions investigated to date but little experimental replication. Overarching barriers to shared and supported decision-making in mental health treatment planning were (1) Organisational (resource limitations, culture barriers, risk management priorities and structure); (2) Process (lack of knowledge, time constraints, health-related concerns, problems completing and using plans); and (3) Relationship barriers (fear and distrust for both service users and clinicians). CONCLUSIONS: On the basis of the barriers identified, recommendations are made to enable the implementation of new policies and programs, the designing of new tools and for clinicians seeking to practice shared and supported decision-making in the healthcare they offer. PATIENT OR PUBLIC CONTRIBUTION: This systematic review has been guided at all stages by a researcher with experience of mental health service use, who does not wish to be identified at this point in time. The findings may inform organisations, researchers and practitioners on implementing supported decision-making, for the greater involvement of people with mental ill health in their healthcare.

'ALL ABOUT MY IDEAL MENTAL HEALTH SERVICE': Users, family members and experts by experience discussing a co-designed service.

INTRODUCTION: Many studies have investigated patients' understandings of how to optimise mental health services. However, only a few studies in the Italian context have involved experts by experience (EbEs), who can be ex-users, family members of ex-users or current service collaborators. Their role is crucial in implementing collaborative service quality assessment projects. METHOD: The study investigated the experience of 35 EbEs,  users, and family members who carried out a 9-month fortnightly project aimed at imagining an 'ideal service'. The facilitators of the discussion groups (two EbEs) were interviewed; written reports of each meeting were produced with relevant comments, notes and specific suggestions; and content analysis was applied. RESULTS: The most important result concerns the effectiveness of the project management method and group leadership carried out by the two EbEs. This approach allowed for complete autonomy of the work, without professional gaze or power imbalance. Also, the ideas and specific contents focused on by the two groups offer strategies to facilitate users' entry and reception in health care centres, to reduce the stigma of mental illness, to improve the centres' physical environment, to improve organisational aspects, to keep family members actively involved and to network mental health services with other territorial services. CONCLUSIONS: EbEs have proven to be key figures in ensuring equity of role in the service co-design process. This also concerns a context, the Italian one, where their role has not yet been recognised and legalised. Their contribution and ideas to improve services could be fundamental not only in mental health centres, but also in other health facilities, and could concern the entire service delivery process rather than being limited to quality assurance, according to a virtuous circle based on active participation and transformation of the role of users. PATIENT OR PUBLIC CONTRIBUTION: This work resulted from close collaboration between the two EbEs who conducted the groups, users and family members, the university, and the psychiatrist in charge of the service. All of them contributed to the research. The EbEs, researchers and psychiatrist participated in the interpretation of the data and are the co-authors of this paper.

The League: A person-centred approach to the development of social robotics for paediatric anxiety.

BACKGROUND: Social robots are promising tools to improve the quality of life of children and youth living with anxiety and should be developed based on the priorities of end users. However, pathways to include young people in patient-oriented research, particularly in the overlap between technology and mental health, have been historically limited. OBJECTIVE: In this work, we describe engagement with experts with lived experiences of paediatric anxiety in a social robotics research programme. We report the experiences of patient advisors in a co-creation process and identify considerations for other research groups looking to involve end users in technology development in the field of youth mental health. DESIGN: We engaged individuals with a lived experience of paediatric anxiety (current, recent past, or from a parent perspective) using three different models over the course of three years. Two initial patient partners were involved during project development, eight were engaged as part of an advisory panel ('the League') during study development and data analysis and four contributed as ongoing collaborators in an advisory role. League members completed a preparticipation expectation survey and a postparticipation experience survey. FINDINGS: Eight individuals from a range of anxiety-related diagnostic groups participated in the League as patient partners. Members were teenagers (n = 3), young adults aged 22-26 years who had connected with a youth mental health service as children within the past eight years (n = 3) or parents of children presently living with anxiety (n = 2). Preferred methods of communication, expectations and reasons for participating were collected. The League provided specific and actionable feedback on the design of workshops on the topic of social robotics, which was implemented. They reported that their experiences were positive and fairly compensated, but communication and sustained engagement over time were challenges. Issues of ethics and language related to patient-centred brain health technology research are discussed. CONCLUSIONS: There is an ethical imperative to meaningfully incorporate the voices of youth and young adults with psychiatric conditions in the development of devices intended to support their mental health and quality of life. PATIENT OR PUBLIC CONTRIBUTION: Six young people and two parents with lived experiences of paediatric anxiety participated in all stages of developing a research programme on social robotics to support paediatric mental health in a community context. They also provided input during the preparation of this manuscript.

The Parkinson's Puzzle Box.

INTRODUCTION: Women and those with younger onset Parkinson's Disease (YOPD) are typically diagnosed later and face unique situations and challenges. This essay aims to raise awareness of the difficulties in diagnosing YOPD and the need for a personalised approach to care for women with YOPD. METHODS: Two professional women with YOPD (academic physiotherapist and practicing dentist) and a female neurologist (clinician academic) came together to write a narrative essay on their personal experience and perspectives in relation to women and YOPD. RESULTS: The essay outlines how the experience of diagnosis is likened to a complex puzzle box with many interlocking components that are hidden and difficult to solve. The concerns of the women about their identity, work, family and the future, with most supports targeting those that are older and retired are outlined. CONCLUSION: It is concluded that YOPD is a complex puzzle to solve, but can be done by understanding all the intricate interlocking components of the puzzle and combined with greater awareness could lead to earlier diagnosis and the delivery of successful person-centred care. PATIENT OR PUBLIC CONTRIBUTION: People with lived experience were involved in the essay conception and writing.

Feasibility, Fidelity and Acceptability of a Person-Centred Care Transition Support Intervention for Stroke Survivors: A Non-Randomised Controlled Study.

BACKGROUND: Care transitions from hospital to home are a critical period for patients and their families, especially after a stroke. The aim of this study was to assess the feasibility, fidelity and acceptability of a co-designed care transition support for stroke survivors. METHODS: A non-randomised controlled feasibility study recruiting patients who had had stroke and who were to be discharged home and referred to a neurorehabilitation team in primary healthcare was conducted. Data on the feasibility of recruitment and fidelity of the intervention were collected continuously during the study with screening lists and checklists. Data on the perceived quality of care transition were collected at 1-week post-discharge with the Care Transition Measure. Data on participant characteristics, disease-related data and outcomes were collected at baseline (hospitalisation), 1 week and 3 months post-discharge. Data on the acceptability of the intervention from the perspective of healthcare professionals were collected at 3 months using the Normalisation Measure Development Questionnaire. RESULTS: Altogether, 49 stroke survivors were included in the study: 28 in the intervention group and 21 in the control group. The recruitment and data collection of patient characteristics, disease-related data, functioning and outcomes were feasible. The fidelity of the intervention differed in relation to the different components of the co-designed care transition support. The intervention was acceptable from the perspective of healthcare professionals. Concerns were raised about the fidelity of the intervention. A positive direction of effects of the intervention on the perceived quality of the care transition was found. CONCLUSION: The study design, data collection, procedures and intervention were deemed feasible and acceptable. Modifications are needed to improve intervention fidelity by supporting healthcare professionals to apply the intervention. The feasibility study showed a positive direction of effect on perceived quality with the care transition, but a large-scale trial is needed to determine its effectiveness. PATIENT OR PUBLIC CONTRIBUTION: Stroke survivors, significant others and healthcare professionals were involved in a co-design process, including the joint development of the intervention's components, contextual factors to consider, participant needs and important outcomes to target. TRIAL REGISTRATION: ClinicalTrials.gov ID: NCT0292587.

Implement social prescribing successfully towards embedding: what works, for whom and in which context? A rapid realist review.

BACKGROUND: Some clients who access healthcare services experience problems due to the wider determinants of health which cannot be addressed (solely) by the medical sector. Social Prescribing (SP) addresses clients ' wider health needs and is based on linkworkers who support primary care clients in accessing social, community and voluntary care services that support their needs. Previous literature has provided valuable insights about what works (or not) in an early stage of implementing SP. However, there is limited insight into what works for the implementation of SP towards embedding. This study provides guiding principles by which SP can be successfully implemented towards the embedding stage and identifies which contextual factors and mechanisms influence these guiding principles. METHODS: A Rapid Realist Review was conducted to examine what works, for whom, why, and in which contexts. A local Dutch reference panel consisting of health and care organisations helped to inform the research questions. Additionally, a workshop was held with the panel, to discuss what the international insights mean for their local contexts. This input helped to further refine the literature review's findings. RESULTS: Five guiding principles were identified for successful implementation of SP at the embedding stage: • Create awareness for addressing the wider determinants of health and the role SP services can play; • Ensure health and care professionals build trusting relationships with all involved stakeholders to create a cyclical referral process; • Invest in linkworkers' skills and capacity so that they can act as a bridge between the sectors; • Ensure clients receive appropriate support to improve their self-reliance and increase their community participation; • Invest in the aligning of structures, processes and resources between involved sectors to support the use of SP services. CONCLUSION: To embed SP, structural changes on a system level as well as cultural changes are needed. This will require a shift in attitude amongst health and care professionals as well as clients towards the use, role and benefit of SP services in addressing the wider determinants of health. It will also require policymakers and researchers to involve communities and include their perspectives.

Benefits, implementation and sustainability of innovative paediatric models of care for children with type 1 diabetes: a systematic review.

BACKGROUND AND AIM: The evidence about the acceptability and effectiveness of innovative paediatric models of care for Type 1 diabetes is limited. To address this gap, we synthesised literature on implemented models of care, model components, outcomes, and determinants of implementation and sustainability. METHODS: A systematic review was conducted and reported in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Database searches of Medline, CINAHL, EMBASE and Scopus were conducted. Empirical studies focused on Type 1 diabetes paediatric models of care, published from 2010 to 2022 in English were included. RESULTS: Nineteen extant studies reported on models and their associations with health and psychosocial outcomes, patient engagement with healthcare, and healthcare costs. Thirteen studies described multidisciplinary teamwork, education and capacity building that supported self-care. Four studies involved shared decision making between providers and patients, and two discussed outreach support where technology was an enabler. Fourteen studies reported improvements in health outcomes (e.g. glycaemic control), mostly for models that included multidisciplinary teams, education, and capacity building (11 studies), outreach support or shared care (3 studies). Four studies reported improvements in quality of life, three reported increased satisfaction for patients and carers and, and one reported improved communication. Four of five studies describing shared care and decision-making reported improvements in quality of life, support and motivation. Outreach models reported no negative outcomes, however, accessing some models was limited by technological and cost barriers. Eight studies reported on model sustainability, but only half reported implementation determinants; none reported applying a theoretical framework to guide their research. CONCLUSION: Some health and psychosocial benefits were associated with newer models. To address knowledge gaps about implementation determinants and model sustainability, longitudinal studies are needed to inform future adoption of innovative models of care for children with Type 1 diabetes.

Structural validation of two person-centred practice inventories PCPI-S and PCPI-C - French version.

BACKGROUND: The shift towards person-centred care has become integral in achieving high-quality healthcare, focusing on individual patient needs, preferences, and values. However, existing instruments for measuring person-centred practice often lack theoretical underpinnings and comprehensive assessment. The Person-centred Practice Inventory - Staff (PCPI-S) and the Person-centred Practice Inventory - Care (PCPI-C) were developed in English to measure clinicians' and patients' experience of person-centred practice. The aim of this study was to investigate the psychometric properties of the French version of the PCPI-S and PCPI-C. METHODS: A multi-centred cross-sectional study was conducted in six hospitals in French-speaking Switzerland. Construct validity of the PCPI-S and the PCPI-C was evaluated by using confirmatory factor analysis and McDonald's Omega coefficient was used to determine the internal consistency. RESULTS: A sample of 558 healthcare professionals and 510 patients participated in the surveys. Psychometric analyses revealed positive item scores and acceptable factor loadings, demonstrating the meaningful contribution of each item to the measurement model. The Omega coefficient indicated acceptable to excellent internal consistency for the constructs. Model fit statistics demonstrated good model fit for the PCPI-S and PCPI-C. CONCLUSIONS: The findings support the construct validity and internal consistency of the PCPI-S and PCPI-C in assessing person-centred practice among healthcare professionals and patients in French-speaking Switzerland. This validation offers valuable tools for evaluating person-centred care in hospital settings.

"They seemed to be like cogs working in different directions": a longitudinal qualitative study on Long COVID healthcare services in the United Kingdom from a person-centred lens.

BACKGROUND: The COVID-19 pandemic has presented significant challenges to the already over-stretched healthcare system in the United Kingdom (UK). These challenges are particularly pronounced for people living with the novel condition of Long COVID (LC) as they often face persistent and fluctuating symptoms, encountering prolonged uncertainty when seeking medical support. Despite a growing understanding of the healthcare challenges associated with LC, existing qualitative studies have predominantly focused on individual experiences rather than examining the structural aspects of healthcare. METHODS: A longitudinal qualitative study with 80 participants and 12 healthcare practitioners was conducted in the UK to explore the healthcare experiences of those with LC. In total, 178 interviews (with attrition) were collected across two rounds, from November 2021 to March 2022, and from June to October 2022. RESULTS: Embracing a person-centred framework that recognises and nurtures interconnected individual, relational, and existential needs, we investigated healthcare experiences related to LC across primary, secondary, and specialist integrated care. Using this perspective, we identified three overarching themes. Theme 1 addresses the persistent hurdle of accessing primary care as the initial point of contact for LC healthcare; Theme 2 underscores the complexity of navigating secondary care; and Theme 3 encapsulates the distinctive challenges of developing LC integrated care. These themes are interlinked, as people with LC often had to navigate or struggle between the various systems, with practitioners seeking to collaborate across the breadth of their professional responsibilities. CONCLUSION: From a person-centred approach, we were able to identify the needs of those affected by lasting LC symptoms and comprehend how health services intricately influence these needs. The focus on healthcare systems also captures the nuanced impact that continuing healthcare struggles can have on people's identity. As such, our findings provide evidence to inform a more effective and sustainable delivery of person-centred care for people with LC across various healthcare settings and over time.

Implementation of an integrated primary care prevention and management program for chronic low back pain (LBP): patient-reported outcomes and predictors of pain interference after six months.

BACKGROUND: Integrated primary care programs for patients living with chronic pain which are accessible, interdisciplinary, and patient-centered are needed for preventing chronicity and improving outcomes. Evaluation of the implementation and impact of such programs supports further development of primary care chronic pain management. This study examined patient-reported outcomes among individuals with low back pain (LBP) receiving care in a novel interdisciplinary primary care program. METHODS: Patients were referred by primary care physicians in four regions of Quebec, Canada, and eligible patients received an evidence-based interdisciplinary pain management program over a six-month period. Patients were screened for risk of chronicity. Patient-reported outcome measures of pain interference and intensity, physical function, depression, and anxiety were evaluated at regular intervals over the six-month follow-up. A multilevel regression analysis was performed to evaluate the association between patient characteristics at baseline, including risk of chronicity, and change in pain outcomes. RESULTS: Four hundred and sixty-four individuals (mean age 55.4y, 63% female) completed the program. The majority (≥ 60%) experienced a clinically meaningful improvement in pain intensity and interference at six months. Patients with moderate (71%) or high risk (81%) of chronicity showed greater improvement in pain interference than those with low risk (51%). Significant predictors of improvement in pain interference included a higher risk of chronicity, younger age, female sex, and lower baseline disability. CONCLUSION: The outcomes of this novel LBP program will inform wider implementation considerations by identifying key components for further effectiveness, sustainability, and scale-up of the program.

A collaborative endeavour to integrate leadership and person-centred ethics: a focus group study on experiences from developing and realising an educational programme to support the transition towards person-centred care.

BACKGROUND: Ensuring the transition towards person-centred care is a growing focus in health and social care systems globally. Presented as an ethical framework for health and social care professionals, such a transition requires strong leadership and organisational changes. However, there is limited guidance available on how to assist health and social care leaders in promoting person-centred practices. In response to this, the Swedish Association of Health Professionals and the University of Gothenburg Centre for Person-Centred Care collaborated to develop an educational programme on person-centred leadership targeting health and social care leaders to support the transition towards person-centred care in Sweden. The aim with this study was to explore programme management members' experiences from the development and realisation of the programme. METHODS: Focus group discussions were conducted, involving 12 members of the programme management team. Data from the discussions were analysed using a structured approach with emphasis the collaborative generation of knowledge through participant interaction. RESULTS: The analysis visualises the preparations and actions involved in programme development and realisation as a collaborative endeavour, aimed at integrating leadership and person-centred ethics in a joint learning process. Participants described the programme as an ongoing exploration, extending beyond its formal duration. Leadership was thoughtfully interwoven with person-centred ethics throughout the programme, encompassing both the pedagogical approach and programme curriculum, to provide leaders with tangible tools for their daily use. CONCLUSIONS: According to our analysis, we conclude that a person-centred approach to both development and realisation of educational initiatives to support person-centred leadership is essential for programme enhancement and daily implementation of person-centred leadership. Our main message is that educational initiatives on the application of person-centred ethics is an ongoing and collaborative process, characterised by an exchange of ideas and collective efforts.

Patients' perceptions of use, needs, and preferences related to a telemedicine solution for HIV care in a Norwegian outpatient clinic: a qualitative study.

BACKGROUND: Telemedicine in outpatient services for people living with human immunodeficiency virus (PLHIV) was scaled up during the COVID-19 pandemic as services transitioned to remote care. Many studies have reported on the challenges and advantages of telemedicine care during the pandemic. However, there is limited research on the provision of telemedicine human immunodeficiency virus (HIV) care beyond the COVID-19 pandemic, which entails different telemedicine components and focuses on ways to improve the telemedicine experience for patients. This study aimed to explore PLHIV's perceptions of use, needs, and preferences related to a telemedicine solution for HIV care in an outpatient clinic in Norway. The telemedicine solution included a pre-consultation questionnaire, asynchronous digital messages, and video consultation. METHODS: Qualitative interviews were conducted with 12 PLHIV. The interviews were analysed using thematic analysis. RESULTS: We identified four main themes that covered the participants' perceptions, needs, and preferences: (1) perceived usability, (2) maintaining confidentiality, (3) accommodating personal preferences, and (4) perceived usefulness. Some participants had difficulty logging into the telemedicine solution. Other participants suggested additional functionalities, such as picture sharing and access to test result. Telemedicine care enabled the avoidance of stigmatising clinic experiences, although a few participants reported concerns about confidentiality and data security. Accommodating personal preferences and needs in terms of the type of consultations (in-person or video) and frequency of visits was essential to the participants. With telemedicine care, participants felt more in control of their own lives, perceiving that it increased their perceived quality of life and saved them both time and money for travelling to the clinic. CONCLUSIONS: Our study identified several specific needs and preferences related to the assessed technical solution and the provision of current and future telemedicine care services. Nevertheless, the telemedicine solution was perceived as a usable, flexible, and person-centred approach to HIV care, contributing to accommodating the participants' personal preferences. However, healthcare professionals need to ensure that individual requirements and preferences are consistent with evidence-based follow-up and supported by person-centred care. Thus, the practice of shared decision making is important in telemedicine care.

Evaluating a targeted person-centred pain management intervention programme in lumbar spine surgery - a controlled segment-specific before-and-after interventional design.

BACKGROUND: Postoperative pain management in lumbar spine surgery care remains a challenge. The aim of this study was to evaluate the impact of a person-centred postoperative pain management intervention programme on lumbar spine surgery patients on postoperative pain, shared decision-making, and satisfaction with postoperative pain management. METHODS: The study was performed with a controlled before-and-after interventional design in an orthopaedic unit at a university hospital. Person-centred pain management for patients undergoing spine surgery was developed in co-creation by a multi-professional team and implemented throughout the care pathway. The usual care group (pre-intervention) served as a comparison to the intervention group. Pain intensity, shared decision-making in pain management, and patient satisfaction with results of pain management, served as patient-reported measures, collected using the International Pain Outcomes questionnaire and analysed using descriptive statistics. RESULTS: The intervention showed no benefit for patients' pain and satisfaction, while shared decision-making in pain management was significant lower in the intervention group than in the conventional group. The per-protocol analysis showed no significant differences between groups. CONCLUSION: The initial assumption of the study, that the implementation of a co-created structured person-centred care pathway would improve patient-reported outcomes, was not confirmed. The periodically low fidelity to the intervention due to organizational constraints (due to sub-optimal organizational conditions and managerial support) may have affected the results.

Will older adults be represented in patient-reported data? Opportunities and realities.

Policy makers and health professionals are grappling with the high costs of and demand for health care, questions of sustainability and value, and changing population demographics-in particular, ageing populations. Digital solutions, including the adoption of patient-reported measures, are considered critical in achieving person-centred and value-based health care. However, the utility of patient-reported measures and the data they produce may be subject to ageist beliefs, prejudices and attitudes, rendering these data ineffective at promoting improved patient experiences and outcomes for older adults. This article explores the ethical considerations raised in relation to patient-reported measures and the digital agency of older patients.