Investigating Digital Patient-Reported Outcome Measures in Patient-Centered Diabetes Specialist Outpatient Care (DigiDiaS): Protocol for a Multimethod Prospective Observational Study.

BACKGROUND: Living with type 1 diabetes is challenging, and to support self-management, repeated consultations in specialist outpatient care are often required. The emergence of new digital solutions has revolutionized how health care services can be patient centered, providing unprecedented opportunities for flexible, high-quality care. However, there is a lack of studies exploring how the use of digital patient-reported outcome measures (PROMs) for flexible specialist care affects diabetes self-management. To provide new knowledge on the relevance of using PROMs in standard care, we have designed a multimethod prospective study. OBJECTIVE: The overall aim of this protocol is to describe our prospective multimethod observational study designed to investigate digital PROMs in a routine specialist outpatient setting for flexible patient-centered diabetes care (DigiDiaS). METHODS: This protocol outlines the design of a multimethod prospective observational cohort study that includes data from electronic health records, self-reported questionnaires, clinical consultation field observations, and individual in-depth interviews with patients and diabetes health care personnel. All patients with type 1 diabetes at a designated outpatient clinic were invited to participate and use the digital PROM implemented in clinical care. Both users and nonusers of the digital PROM were eligible for the prospective study, allowing for a comparison of the two groups. Data were collected at baseline and after 12 months, including self-management as the primary outcome assessed using the Patient Activation Measure, along with the secondary outcomes of digital health literacy, quality of life, health economy, and clinical variables such as glycated hemoglobin. RESULTS: The digital solution was implemented for routine clinical care in the department in November 2021, and data collection for the prospective study started in October 2022. As of September 6, 2023, 84.6% (186/220) of patients among those in the digital PROM and 15.5% (34/220) of patients among the nonusers have consented to participate. We expect the study to have enough participants by the autumn of 2023. With 1 year of follow-up, the results are expected by spring 2025. CONCLUSIONS: In conclusion, a multimethod prospective observational cohort study can offer valuable insights into the relevance, effectiveness, and acceptability of digital tools using PROMs in diabetes specialist care. Such knowledge is crucial for achieving broad and successful implementation and use of these tools in a large diabetes outpatient clinic. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/52766.

Living with chronic obstructive pulmonary disease or type 2 diabetes in Greenland - a qualitative interpretive description study.

Non-communicable diseases such as chronic obstructive pulmonary disease (COPD) and type 2 diabetes mellitus (T2D) represent major challenges for health systems all over the world. In an interview study, we explored patient experiences and perspectives of being diagnosed and living with COPD or T2D in Greenland. Participants (n = 24) were selected by purposeful sampling and recruited by phone. We conducted individual semi-structured interviews at the National Hospital in Nuuk and the four regional hospitals. Interviews were audio-recorded, transcribed verbatim, and analysed using interpretive description. Three themes emerged: shock and shame on receiving the diagnosis, coping with a changed life, and varying needs for care and communication. We found that being diagnosed with COPD or T2D required a rapid change in the participants' everyday lives and lifestyle behaviours. Some self-managed their disease well and were able to transfer their knowledge and integrate it into their daily lives, while others struggled to make lifestyle changes. Additionally, living with COPD or T2D could be related to silence and shame. The findings contribute to a better understanding of living with COPD or T2D in the Arctic region and the development of future, culturally-adapted patient education initiatives.

Patient-reported outcome measures in diabetes outpatient care: a scoping review.

BACKGROUND: Patient-reported outcome (PRO) measures are increasingly used in clinical diabetes care to increase patient involvement and improve healthcare services. The objectives were to identify instruments used to measure PROs in outpatient diabetes clinics and to investigate the use of these PRO measures alongside the experiences of patients and healthcare personnel in a clinical setting. RESEARCH DESIGN AND METHODS: A scoping review was conducted according to the framework of Arksey and O'Malley with scoping searches of Cinahl, EMBASE, Medline and Health and Psychosocial Instruments. Studies reporting on adults with diabetes in a clinical setting where the PRO measure response directly affected patient care were eligible for inclusion. RESULTS: In total, 35 197 citations were identified, of which 7 reports presenting 4 different PRO measures were included in the review. All four of the included items measured psychosocial aspects of diabetes, and three included elements of the Problem Areas in Diabetes scale. All the patients were satisfied with the use of PRO measures in clinical care, whereas the level of satisfaction among healthcare personnel with PRO measures varied within and among studies. CONCLUSIONS: The limited number of eligible studies in this review suggests that research on PRO measures for diabetes outpatient care is scarce. Patients welcome the opportunity to express their concerns through the systematic collection of PRO measures, and some healthcare personnel value the broader insight that PRO measures provide into the impact of diabetes on patients' lives. However, the heterogeneity among services and among patients challenges the implementation of PRO measures. Research is needed to explore how PRO measures in clinical outpatient care affect healthcare personnel workflow. REVIEW REGISTRATION: https://doi.org/10.17605/OSF.IO/46AHC.

Involving children and adolescents with type 1 diabetes in health care: a qualitative study of the use of patient-reported outcomes.

BACKGROUND: Within pediatric health care services, Patient-reported Outcomes (PROs) regarding the patient's health status are mainly used for research purposes in a chronic care setting. However, PROs are also applied in clinical settings in the routine care of children and adolescents with chronic health conditions. PROs have the potential to involve patients because they 'place the patient at the center' of his or her treatment. The investigation of how PROs are used in the treatment of children and adolescents and how this use can influence the involvement of these patients is still limited. The aim of this study was to investigate how children and adolescents with type 1 diabetes (T1D) experience the use of PROs in their treatment with a focus on the experience of involvement. RESULTS: Employing Interpretive Description, 20 semi-structured interviews were conducted with children and adolescents with T1D. The analysis revealed four themes related to the use of PROs: Making room for conversation, Applying PROs under the right circumstances, Questionnaire structure and content, and Becoming partners in health care. CONCLUSIONS: The results clarify that, to some extent, PROs fulfill the potential they promise, including patient-centered communication, detection of unrecognized problems, a strengthened patient-clinician (and parent-clinician) partnership, and increased patient self-reflection. However, adjustments and improvements are needed if the potential of PROs is to be fully achieved in the treatment of children and adolescents.

Patients' perspectives on screening for disordered eating among adolescents with type 1 diabetes.

PURPOSE: People with type 1 diabetes have an increased risk of disordered eating (DE) and eating disorders (ED). Screening is recommended however little is known about patients' perspectives on screening questionnaires. This paper reports qualitative analyses of patients' perspectives on the questionnaire Diabetes Eating Problem Survey Revised (DEPS-R), including acceptability, attitudes, and cognitive understanding. RESEARCH DESIGN AND METHODS: 15 adolescents with type 1 diabetes between 11 and 18 years, were interviewed. A semi-structured format and a qualitative Interpretive Descriptive (ID) methodology was chosen. RESULTS: The analyses identified four themes: (1) The Questionnaire, (2) Reframing Diabetes Visits, (3) This is (not) for me, and (4) Out in the Open. The DEPS-R was completed with-in 5-10 min. with no technical difficulties. The questionnaire altered the diabetes visit for some, creating a new dialog, and time for self-reflection. Adolescents appreciated the direct approach in the questionnaire, and showed willingness to complete the questionnaire, when presented to them by a health care professional (HCP). One item in the DEPS-R proved difficult to understand for some participants. CONCLUSION: The study highlights DEPS-R as a clinically relevant screening questionnaire. Completing DEPS-R prior to a consultation opens the door to a consultation that invites the adolescent to address matters of eating behavior. Our findings suggest that systematic screening of DE/ED using the DEPS-R is both accepted and welcomed by adolescents with type 1 diabetes. Future research should focus on a potential update of selected items in DEPS-R. LEVEL OF EVIDENCE: V - qualitative study.

Patient-reported outcome (PRO) measurements in chronic and malignant diseases: ten years' experience with PRO-algorithm-based patient-clinician interaction (telePRO) in AmbuFlex.

BACKGROUND: Patient-reported Outcome (PRO) measures may be used as the basis for out-patient follow-up instead of fixed appointments. The patients attend follow-up from home by filling in questionnaires developed for that specific aim and patient group (telePRO). The questionnaires are handled in real time by a specific algorithm, which assigns an outcome color reflecting clinical need. The specific questionnaires and algorithms (named solutions) are constructed in a consensus process with clinicians. We aimed to describe AmbuFlex' telePRO solutions and the algorithm outcomes and variation between patient groups, and to discuss possible applications and challenges. METHODS: TelePRO solutions with more than 100 processed questionnaires were included in the analysis. Data were retrieved together with data from national registers. Characteristics of patients, questionnaires and outcomes were tabulated for each solution. Graphs were constructed depicting the overall and within-patient distribution of algorithm outcomes for each solution. RESULTS: From 2011 to 2021, 29 specific telePRO solutions were implemented within 24 different ICD-10 groups. A total of 42,015 patients were referred and answered 171,268 questionnaires. An existing applicable instrument with cut-off values was available for four solutions, whereas items were selected or developed ad hoc for the other solutions. Mean age ranged from 10.7 (Pain in children) to 73.3 years (chronic kidney disease). Mortality among referred patients varied between 0 (obesity, asthma, endometriosis and pain in children) and 528 per 1000 patient years (Lung cancer). There was substantial variation in algorithm outcome across patient groups while different solutions within the same patient group varied little. DISCUSSION: TelePRO can be applied in diseases where PRO can reflect clinical status and needs. Questionnaires and algorithms should be adapted for the specific patient groups and clinical aims. When PRO is used as replacement for clinical contact, special carefulness should be observed with respect to patient safety.

Patient-reported outcome instruments for assessing the involvement of children and adolescents with type 1 diabetes in their treatment: a scoping review protocol.

OBJECTIVE: The objective of this review is to identify available patient-reported outcome instruments used to assess the involvement of children and adolescents with type 1 diabetes in their treatment. Specifically, this review will examine the content, structure, and application of these instruments. INTRODUCTION: It is considered meaningful to involve children and adolescents living with a chronic health condition, such as type 1 diabetes, in their own treatment. Despite a growing interest in patient involvement within pediatric health care, including the use of patient-reported outcomes, only a few patient-reported outcome instruments have been developed and are used to evaluate the experiences of children and adolescents with type 1 diabetes of being involved in their own treatment. INCLUSION CRITERIA: This scoping review will examine patient-reported outcome instruments used to assess the experiences of children and adolescents (11 to 18 years of age) with type 1 diabetes of being involved in their own care. Patient-reported outcome instruments measuring parents' or clinicians' experiences of involvement will be excluded. METHODS: The proposed review will follow JBI guidelines and all stages will involve 2 or more reviewers. PubMed, Embase, CINAHL, PsycINFO, JSTOR, and MedNar will be searched without limitations on the year or language of publication. Literature that is not written in English will be translated. Data extraction, charting, and analysis will be guided by a template developed for this review that focuses on the content, structure, and application of the patient-reported outcome instruments. Any modifications to the extraction template will be detailed in the review, and data will be presented in a descriptive format.

Adapting a Patient-Reported Outcome Measure to Digital Outpatient Specialist Health Care Services for Type 1 Diabetes: User Involvement Study.

BACKGROUND: Diabetes self-management is crucial for patients with type 1 diabetes, and digital services can support their self-management and facilitate flexible follow-up. The potential of using digital patient-reported outcome (PRO) measures in routine outpatient care is not fully used owing to a lack of adapted PRO measures. OBJECTIVE: This study presents the process of identifying and adapting a digital PRO measure for use in clinical diabetes practice and describes the preferred item topics of the adapted PRO measure, as reported by patients and diabetes specialist nurses. METHODS: With the involvement of patients, diabetes specialist nurses, management, and researchers, we hosted a series of workshops and 2 dialogue conferences. Scoping searches to identify relevant PRO measures formed the foundation for the process. An in-person dialogue conference was conducted with diabetes specialist nurses as participants, and a digital dialogue conference was conducted with patients with type 1 diabetes as participants. A diabetes-specific PRO measure was translated and adapted to our digital platform. Notes and summaries from the dialogue conferences were imported into NVivo (QSR International) and thematically analyzed as a single combined data set. RESULTS: The thematic analysis of the 2 dialogue conferences aimed to explore the views of patients with type 1 diabetes and diabetes specialist nurses on the outcomes necessary to measure. An overarching theme, Ensuring that the PRO measure captures the patients' needs precisely and accurately, in a way that facilitates care and communication with health care personnel, was identified and supported with data from both the patients and diabetes specialist nurses. This theme contained four categories: The need for explanatory text after questions to ensure understanding and accurate response, Capturing individual needs in standardized questions, getting to the heart of the patient's problem, and The questions increase patient reflection. CONCLUSIONS: We successfully conducted an iterative process that identified a PRO measure aligned with the topics raised by the diabetes specialist nurses. Similarly, the patients found the PRO measure to be relevant and one that was addressing their needs. Only minor adjustments were necessary when programming the PRO measure in the digital platform. Our management, patients, and diabetes specialist nurses had a valuable impact on the results. User involvement facilitated a specific focus on the clinical requests to be met by PRO measures and how they must be adapted to local and digital platforms. Overall, this has facilitated the current implementation of the adapted digital PRO measure.

Test-retest reliability and measurement error of the WHO-5 Well-being Index and the Problem Areas in Diabetes questionnaire (PAID) used in telehealth among patients with type 1 diabetes.

BACKGROUND: Patient-reported outcome (PRO) measures may be used in telehealth for the clinical assessment of mental health and diabetes distress, which are important aspects in diabetes care, but valid and reliable instruments on these topics are necessary. We aimed to evaluate the test-retest reliability and measurement error of the Danish versions of the WHO-Five Well-being Index (WHO-5) and Problem Areas in Diabetes (PAID) questionnaires used in a PRO-based telehealth intervention among patients with type 1 diabetes. A further aim was to evaluate the test-retest reliability of single items concerning patients' symptom burden and general health status. METHODS: Outpatients with type 1 diabetes from the Steno Diabetes Center Aarhus, Aarhus University Hospital, Denmark, were enrolled from April 2019 to June 2020. Patients aged ≥ 18 who had type 1 diabetes for > 1 year, internet access, and the ability to understand, read, and write Danish were included. Intraclass correlation coefficients (ICC) and weighted Kappa values were used to assess test-retest reliability, and measurement error was assessed by estimating the minimal detectable change (MDC). RESULTS: A total of 146/255 (57%) patients completed the web questionnaire twice. The median response time between the two-time points was five days. The ICC of the WHO-5 scale was 0.87 (95% CI 0.82-0.90), and MDC was 18.56 points (95% CI 16.65-20.99). The ICC of the PAID scale was 0.89 (95% CI 0.84-0.92), and MDC was 11.86 points (95% CI 10.46-13.70). Overall, test-retest reliability of single symptoms and general health status items was substantial. CONCLUSIONS: The WHO-5 and PAID questionnaires, and single symptoms and general health status items showed substantial test-retest reliability among patients with type 1 diabetes. Measurement error of the PAID questionnaire was considered acceptable; however, a larger measurement error of the WHO-5 questionnaire was observed. Further research is recommended to explore these findings.

Health literacy and related behaviour among pregnant women with obesity: a qualitative interpretive description study.

BACKGROUND: Obesity in pregnant women is increasing worldwide, affecting the health of both mother and baby. Obesity may be associated with inadequate health literacy, a central competence when navigating antenatal health information and services. This study explores women's health literacy by examining their knowledge, motivation and skills to access, understand and evaluate health information and the related behaviour among a sample of pregnant women with a prepregnant body mass index (BMI) > 25 kg/m2. METHODS: An inductive, qualitative study using an interpretive description methodology. Data was collected through ten semi-structured interviews with pregnant women with a prepregnancy BMI > 25 kg/m2 attending antenatal care at the midwifery clinic at Aarhus University Hospital in the Central Denmark Region. RESULTS: Pregnant women with obesity understand general health information provided by health professionals, but translating this knowledge into specific healthy behaviours presents a challenge. Although difficulties navigating booking systems and available digital services contribute to this problem, apps can help facilitate navigation. However, successful navigation may depend on adequate e-health literacy. Conflicting information from health professionals, social media and families also present a challenge for pregnant women, requiring a broad skillset for critical evaluation and resolution. CONCLUSIONS: Adequate health literacy is necessary for pregnant women receiving antenatal care to (i) translate general health information into personalised healthy behaviour, (ii) access and navigate complex and digitalised systems, and (iii) critically evaluate conflicting information. Person-centred differentiation in the organisation of antenatal care may benefit vulnerable pregnant women with inadequate health literacy. TRIAL REGISTRATION: The study was registered cf. General Data Protection Regulation, Aarhus University Journal number 2016-051-000001, serial number 1934.

Between a rock and a hard place: Nurse managers' experiences of large-scale organizational change in the public health service.

BACKGROUND: Nurse managers are often at the forefront of implementing organizational changes. Studies suggest that conflicting pressures and stress are high during such times, though little is known of how nurse managers experience the continuing run of change initiatives. AIMS: To explore nurse managers' experience of large-scale organizational changes and its impact on their working lives and conditions. DESIGN: A qualitative phenomenological hermeneutical study utilizing a Ricœur-inspired method of interpretation. METHODS: Semi-structured interviews were conducted with 12 nurse managers at a public sector university hospital that had recently undergone large-scale organizational changes. Interviews were conducted in 2021 during the covid-19 pandemic. The analysis is based on the three-stage Ricœur-inspired analysis method by Pedersen and Dreyer. RESULTS: Three themes emerged outlining the nurse managers experiences of large-scale organizational change: The need for support structures to be incorporated in the change process, The need for a guiding star, and The challenge of the values embedded in the Nurse Manager mindset. These themes were consistent across both predominantly positive as well as mainly negative experiences. CONCLUSION: This study reveals the potential that receiving support from management, staff and peers has to positively influence the experiences of nurse managers during large-scale organizational changes. However, lacking a clear vision for the process negatively influences their ability to support high-level quality care within their wards, potentially increasing their feelings of stress and conflicting pressure. IMPACT: Participants offered important insight into the sparsely explored subject of nurse managers' experiences of organizational change, the complexity they face and the potentially high personal costs. The study highlights the detrimental effects of not providing support to all managers in organizations undergoing change, and the parallels to the covid-19 pandemic. No Patient or Public Contribution was required for this study due to its aim.

Developing and testing guidance to support researchers engaging patient partners in health-related research.

BACKGROUND: Although interest in Patient and Public Involvement in health-related research is growing, there seems to be a lack of guidance supporting researchers in deciding on methods and levels for Patient and Public Involvement in health-related research throughout the research process. Furthermore, the numerous definitions, methods, and frameworks make it challenging for researchers new to this field to decide on the most appropriate approach for their project. METHODS: This study aimed to develop and test guidance for researchers deciding on approaches, levels, and methods for engaging patient partners in health-related research. A group of 11 researchers in Patient and Public Involvement in health-related research participated in six workshops to develop the guidance. The feasibility and acceptability of the guidance were tested in a survey of 14 researchers using the System Usability Scale plus two elaborative questions. The guidance was also tested by five PhD students engaging patient partners in their projects. RESULTS: The guidance developed consisted of two resources: Resource I outlined five international approaches to Patient and Public Involvement in health-related research, and Resource II described the different levels and methods for engaging patient partners in research. The System Usability Scale score (at the 50th percentile) was 80, indicating excellent usability. Qualitative data showed that the two resources supported reflections regarding different approaches, levels, and methods. CONCLUSION: The researchers found the guidance to be supportive of their reflective thinking about engaging patient partners in their research. The testing provided knowledge about when and how to use the guidance but also raised questions about the usefulness of the guidance in communications with patients.

More and more patients are taking part in research as patient partners. However, researchers have little guidance on how to bring patient partners into research studies and at what levels. There are many ways to do this. It can be hard to choose the way most appropriate for a specific project, especially for newer researchers. We (11 researchers at different career levels) developed guidance through six workshops to help new researchers choosing the way to engage patient partners most appropriate for their project. The guidance resulted in two different resources. Resource I gives five international approaches for bringing patient partners into research. Resource II describes methods for engaging patient partners at different levels. Fourteen researchers and five PhD students tested the guidance and scored how usable it is. It had excellent usability. The two resources did help researchers to decide on the best ways to engage patient partners in research. We now need to test how the guidance can be used to talk to patients about taking part in specific research projects.

Randomized controlled study to evaluate the impact of flexible patient-controlled visits in people with type 1 diabetes: The DiabetesFlex Trial.

AIM: The objective of this study was to assess the impact of health care-initiated visits versus patient-controlled flexible visits on clinical and patient-reported outcomes in people with type 1 diabetes. METHODS: The DiabetesFlex trial was a randomized controlled, pragmatic non-inferiority 15-month follow-up study comparing standard care (face-to-face visits every 4 months) with DiabetesFlex (patient-controlled flexible visits using patient-reported, outcome-based telehealth follow-up). Of 343 enrolled participants, 160 in each group completed the study. The primary outcome was mean change in HbA1c from baseline to 15-month follow-up. Secondary outcomes were blood pressure, lipid levels, frequency of visits, the World Health Organization score-five well-being-index (WHO-5), the Problem Areas In Diabetes (PAID) scale and experience of participation in own care (participation score). RESULTS: The adjusted mean difference in HbA1c between standard care and DiabetesFlex was similar and below the predefined non-inferiority margin of 0.4% (-0.03% [95%CI: 0.15, 0.11]/-0.27 mmol/mol [-1.71, 1.16]). No intergroup mean changes in lipid or blood pressure were observed. Conversely, DiabetesFlex participants presented an increased mean WHO-5 index of 4.5 (1.3, 7.3), participation score of 1.1 (0.5, 2.0), and decreased PAID score of -4.8 (-7.1, -2.6) compared with standard care. During follow-up, DiabetesFlex participants actively changed 23% of face-to-face visits to telephone consultations, cancelled more visits (17% vs. 9%), and stayed away without cancellation less often (2% vs. 8%). CONCLUSION: Compared with standard care, flexible patient-controlled visits combined with patient-reported outcomes in participants with metabolic controlled type 1 diabetes and good psychological well-being further improved diabetes-related well-being and decreased face-to-face visits while maintaining safe diabetes management.

Older hospitalised patients' experience of involvement in discharge planning.

INTRODUCTION: Worldwide healthcare policy highlights patient involvement and participation. Older people with chronic diseases and comorbidities are in need of complex healthcare. Even though these issues have been highlighted, there is a need to investigate older patients' perspective on discharge planning in order to ensure quality in the healthcare system. AIM: The aim was to explore how older medical patients experience their own involvement in discharge planning from a medical department. METHODOLOGICAL DESIGN: A qualitative study using semi-structured interviews with 20 patients aged 60+. Interviews were conducted 1 week after discharge in the patients' homes. ETHICAL APPROVAL: The study was approved by the Danish Data Protection Agency, and ethical principles were applied while the study was being conducted. All participants provided informed consent. RESULTS: The participants had individual needs and various experiences of being involved in their discharge planning. One main category emerged from the study, "Different levels of rapport," as well as three subcategories, "A lot of information-mostly from healthcare professionals to patients," "The distribution of roles between healthcare professionals and patients" and "The meaning of having relatives." CONCLUSION: The participants had various experiences and preferences based on their involvement in discharge planning. In general, older people wished to be involved in discharge planning. Healthcare professionals should thus be aware of the involvement levels of such patients and adjust nursing to these levels during hospitalisation.

Involving frail older patients in identifying outcome measures for transitional care-a feasibility study.

BACKGROUND: During care transitions, the older (75+) patient's agenda can easily be missed. To counteract this, involving patients in shared clinical decision making has proven to be of great value. Likewise, involving patients and other stakeholders as researchers is gaining ground. Patient and public involvement (PPI) in research entails many benefits, for example, by bringing further insight from those with lived experiences of being ill. There are various challenges associated with involving some older patients, for example frailty, cognitive impairment and other chronic illnesses. To the best of our knowledge, there are only a few examples of initiatives involving older patients beyond research participation. The feasibility of involving frail older patients during an ongoing care transition from hospital to primary health care remains unknown. To investigate the feasibility of including older frail patients, their relatives and health care professionals (HCPs) as co-researchers, we established a study with increasingly demanding levels of patient involvement to identify relevant outcome measures for future transitional care research. METHODS: The study was a pragmatic, qualitative feasibility study. The involved individuals were frail older patients, their relatives and HCPs. Patients and their relatives were interviewed, while the interviewer made reflective notes. A thematic analysis was made. Relatives and HCPs discussed the themes to identify relevant outcome measures and potentially co-create new patient-reported outcome measures (PROMs) for use in future transitional care studies. The feasibility was evaluated according to six involvement steps. The level of involvement was evaluated using the five-levelled Health Canada Public Involvement Continuum (HCPIC). RESULTS: In total, eight patients, five relatives and three HCPs were involved in the study. Patients were involved in discussing care transitions (HCPIC level 3), while some relatives were engaged (HCPIC level 4) in forming PROMs. The partnership level of involvement (HCPIC level 5) was not reached. The thematic analysis and the subsequent theme discussion successfully formed PROMs. The key PROMs were related to care, transparency and the relatives' roles in the transitional care process. CONCLUSIONS: When applying a pragmatic involvement approach, frail older patients can be successfully involved in identifying relevant transitional care outcome measures; however, involving these patients as fellow researchers seems infeasible. To maintain involvement, supportive relatives are essential. Useful experiences for future research involvement of this vulnerable group were reported, arguing that patient participation has the potential to become inherent in future geriatric research.

The purpose of the study was to involve patients in identifying relevant outcome measures for future transitional care research. Involving patients in research is not new. What makes this project special is that it seeks to involve old, frail patients aged 75 plus.The project used open-form interviews that were not constrained in time and were not audio recorded; this was done to obtain confidence from the patients and their relatives. Each patient was interviewed twice: shortly before the patients left the hospital and shortly after discharge. The purpose was to discuss the patient's experiences during the discharge period. The first interview took place in the hospital, whereas the interviewer visited the patients in their residence for the second interview. An expert panel was then formed involving the patients' relatives and the professional health care workers. The expert panel discussed themes based on the data expressed by the patients during the interviews. In addition, an attempt was made to establish long-term cooperation between the patients, their relatives and the researchers. The health condition and vulnerable state of the patients made it difficult to continue their involvement throughout the research process. In fact, only the relatives and professionals were able to take part in the expert panel. Despite these challenges, the outcome of the project was positive. In conclusion, it makes sense to involve frail patients in transitional care research despite the challenges these patients face in their old age. In future research, frail older patients, relatives and other stakeholders can be involved.

An observational study of older patients' experiences of involvement in discharge planning.

The discharge of older patients is complex and healthcare professionals focus more on organizational and coordinating tasks rather than on patient involvement. The study aims to describe older medical patients' experiences of involvement in discharge planning and to identify associations between their experiences of involvement and readmissions. This observational study included 210 older medical inpatients from a Danish university hospital. Data were collected from a questionnaire survey and the patients' medical records. Involvement was measured using the subscales: information, communication, participation, time of discharge, relatives & general impression. Most participants reported receiving the overall information needed before discharge. There was a lack of specific information, regarding medicine and symptoms. Fewer participants reported positively on participation. 23.8% of the participants were readmitted within 30 days. Longer hospitalization, comorbidities and less perceived information were associated with a higher risk of readmission. There were associations between patient involvement and the 30-day readmission rate.

Managing a Bone Healthy Lifestyle After Attending Multifaceted Group Education.

We examined patients with osteoporosis implementation of recommendations regarding a bone healthy lifestyle after the patients attended multifaceted osteoporosis group education (GE). Our findings suggest that GE can support and influence patients' transfer of preventive actions. Still patients are challenged by concerns related to social roles and physical ability. We investigated if and how patients implemented knowledge from attending multifaceted osteoporosis GE in their daily lives. An interpretive description design using ethnographic field work was applied. In all 14 women and three men diagnosed with osteoporosis who attended multifaceted GE at a Danish hospital participated. Data consisted of field work and individual interviews in the participants' everyday environment after completion of GE. After attending multifaceted GE, participants experienced increased attention to and reflected more on how to implement osteoporosis preventive actions or activities. Participants who felt confident on how to act and experienced a clear need and motivation, or who could make the preventive activity into a social event, demonstrated an increased implementation of the preventive activity. On the contrary, attending GE was in some cases not sufficient to overcome social and physical concerns, or to eliminate uncertainty about recommendations or to make participants identify with the osteoporosis diagnosis, which thus impeded implementation of a bone healthy lifestyle. Attending multifaceted GE can support and influence participants' transfer of preventive actions into daily life. Being aware of how concerns about valued social roles and physical ability interfere with the implementation of medical recommendations obviously needs attention during GE.