Feasibility of early digital health rehabilitation after cardiac surgery in the elderly: a qualitative study.

BACKGROUND: Increasing numbers of elderly patients experience prolonged decreased functional capacity and impaired quality of life after seemingly successful cardiac surgery. After discharge from hospital, these patients experience a substantial gap in care until centre-based cardiac rehabilitation commences. They may benefit from immediate coaching by means of mobile health technology to overcome psychological and physiological barriers to physical activity. The aim of this study was to explore the usability, acceptability, and relevance of a mobile health application designed to support remote exercise-based cardiac rehabilitation of elderly patients early after cardiac surgery from the perspective of patients, their relatives, and physiotherapists. METHODS: We adapted a home-based mobile health application for use by elderly patients early after cardiac surgery. Semi-structured dyadic interviews were conducted with a purposive sample of patients (n = 9), their spouses (n = 5), and physiotherapists (n = 2) following two weeks of the intervention. The transcribed interviews were analysed thematically. RESULTS: Three themes were identified: 1) creating an individual fit by tailoring the intervention; 2) prioritizing communication and collaboration; and 3) interacting with the mobile health application. Overall, the findings indicate that the mobile health intervention has the potential to promote engagement, responsibility, and motivation among elderly patients to exercise early after surgery. However, the intervention can also be a burden on patients and their relatives when roles and responsibilities are unclear. CONCLUSION: The mobile health intervention showed potential to bridge the intervention gap after cardiac surgery, as well as in fostering engagement, responsibility, and motivation for physical activity among elderly individuals. Nevertheless, our findings emphasize the necessity of tailoring the intervention to accommodate individual vulnerabilities and capabilities. The intervention may be improved by addressing a number of organizational and communicational issues. Adaptions should be made according to the barriers and facilitators identified in this study prior to testing the effectiveness of the intervention on a larger scale. Future research should focus on the implementation of a hybrid design that supplements or complements face-to-face and centre-based cardiac rehabilitation. TRIAL REGISTRATION: Danish Data Protection Agency, Central Denmark Region (1-16-02-193-22, 11 August 2022).

Decisional needs in people with kidney failure, their relatives and health professionals about end-of-life care options: A qualitative interview study.

AIM: To investigate the decisional needs in Denmark of people with kidney failure, relatives, and health professionals when planning end-of-life care. DESIGN: A qualitative interview study. METHODS: Individual semi-structured interviews were carried out with people with kidney failure, relatives and health professionals from November 2021 to June 2022. Malterud's systematic text condensation was used to analyse transcripts. RESULTS: A total of 13 patients, 10 relatives, and 12 health professionals were interviewed. Overall, four concepts were agreed on: (1) Talking about end of life is difficult, (2) Patients and relatives need more knowledge and information, (3) Health professionals need more tools and training, and (4) Experiencing busyness as a barrier to conversations about end of life. CONCLUSION: People with kidney failure, relatives, and health professionals shared certain decisional needs while also having some different decisional needs about end-of-life care. To meet these various needs, end-of-life conversations should be systematic and organized according to the patients' needs and wishes. IMPACT: Non-systematic end-of-life care decision-making processes limit patients' involvement. Patients and relatives need more knowledge about end-of-life care, and health professionals need more competences and time to discuss decisional needs. A shared decision-making intervention for people with kidney failure when making end-of-life care decisions will be developed. REPORTING METHOD: This empirical qualitative research is reported according to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. PATIENT OR PUBLIC CONTRIBUTION: Patients, relatives, and health professionals have been involved throughout the research process as part of the research team and advisory board. The patients are people with kidney failure and the relatives are relatives of a person with kidney failure. For this study, the advisory board has particularly contributed to the validation of the invitation letter for participation, the interview guides and the preparation of the manuscript.

Levels of health literacy among people living with HIV in outpatient care: a cross-sectional study from Denmark.

BACKGROUND: Low health literacy (HL) among people living with HIV (PLWHIV) encounter more disease related complications, more difficulty understanding health-related information and low adherence. Considering that, the HL levels among PLWHIV needs to be further investigated. The objective of this study was to investigate the levels of HL and patient involvement among PLWHIV in an outpatient clinic in Denmark. A second objective was to examine differences in HL levels across socio-demographic characteristics. METHODS: In 2019, a population of 682 PLWHIV from a Danish outpatient hospital clinic were enrolled in cross-sectional study. Patients who had a digital postbox received an electronic questionnaire including following domains; health literacy, patient involvement, and socio-demographic status. Health literacy was measured using the Health Literacy Questionnaire (HLQ) through scores on three subscales: social support for health (HLQ4), engaging with healthcare providers (HLQ6), and understanding health information (HLQ9). An unpaired t-test was used to investigate mean differences in the HLQ scores across socio-demographic variables. RESULTS: A total of 338 (55%) patients responded to the questionnaire. The included participants demonstrated high levels of HLQ4 (mean = 4.2) and HLQ6 (mean = 4.2), but lower for HLQ9 (mean = 2.9). In total 70-80% reported being involved in decisions about their health. We found a positive association between high level of HL (HLQ9) and living with a partner and higher levels of HL (HLQ4, HLQ6, and HLQ9) and employment. CONCLUSION: PLWHIV in a Danish out-patient care population were found to have high levels of HL despite differences in demographic characteristics. Further research is needed to examine the levels of HL among non-responders to develop HL approaches and strategies to meet the needs of individuals with different HL skills.

Does affiliation to a cross-sectorial lung team impact well-being, health-related quality of life, symptoms of anxiety and depression and patient involvement in patients with COPD? A randomised controlled trial.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) is a progressive lung disease causing limitations in daily life. A cross-sectorial lung team was established for COPD patients at risk of hospitalisation due to exacerbation of COPD. AIMS: To investigate the impact of affiliation to a cross-sectorial lung team on well-being, health-related quality of life, symptoms of anxiety and depression and patient involvement in patients with severe COPD. METHODS: A randomised controlled trial was conducted from September 2017 to March 2020. In total, 109 patients were included for analysis in the study: 53 patients were affiliated to a cross-sectorial lung team and 56 patients received usual care. The patients were included for 1 year. Data were collected at baseline and at follow-up after 1 year. Data were collected using COPD Assessment Test (CAT), Hospital Anxiety and Depression Scale (HADS), EuroQol 5-Dimensions (EQ-5D) and Patient Assessment of Chronic Illness Care (PACIC). RESULTS: The questionnaire response rate was between 84% and 96%. No statistically significant differences were detected between patients affiliated to the cross-sectorial lung team and patients receiving usual care, in either patient's well-being, health-related quality of life, symptoms of anxiety and depression, or patient involvement. However, CAT-total score decreased with -0.21(95%CI: -1.63; 1.20) for patients affiliated to the cross-sectorial lung team and increased with 1.44(95%CI; -0.11; 3.00) for patients receiving usual care. CONCLUSION: Affiliation to the cross-sectorial lung team seems safe as it did not deteriorate the patients' well-being, symptoms of anxiety and depression, health-related quality of life or patient involvement. Further research is needed and interviewing patients to obtain more knowledge on their experiences might be preferable.

Clinical Outcome of a Cross-Sectorial Lung Team Treating Patients with COPD at High Risk of Exacerbation: A Randomized Controlled Trial.

In addition to the financial burden, acute exacerbation of chronic obstructive pulmonary disease (AECOPD) also has a negative impact on health status and disease progression for patients with chronic obstructive pulmonary disease (COPD). The aim of this study was to investigate the effect of affiliation to a cross-sectorial lung team (CLT) on hospitalization and length of hospital stay for patients with COPD and ≥ one severe or two moderate AECOPD events within a year. We conducted a randomized clinical trial between 2017 and 2020. Participants were randomly assigned 1:1 for one year to CLT or usual care (UC). The CLT was available for telephone calls and home visits day and night on the request from patients, and the CLT could initiate home treatment. In total, 56 patients were affiliated to the CLT (Mean: age 71.6 years, FEV1 37.1%) and 57 patients received UC (Mean: age 71.5 years, FEV1; 33.6%). Patients affiliated to the CLT had on average fewer hospitalizations due to AECOPD than patients receiving UC (CLT: 0.59 (95% CI: 0.35; 0.83 - UC: 1.86 (95% CI: 1.12; 2.20; p = 0.002). Patients affiliated to the CLT also had shorter hospital stay on average due to AECOPD (CLT: 3.27(95% CI: 2.39; 4.15 - UC: 4.47 (95% CI: 3.70; 5.24; (p = 0.045). No significant difference in number of severe adverse events, including death, was observed between groups. Affiliation to the CLT seemed safe and reduced both hospitalizations and length of hospital stay related to AECOPD compared to UC.

Integrating Patient Involvement Interventions within Clinical Practice: A Mixed-Methods Study of Health Care Professional Reasoning.

Background. Patient involvement interventions are complex interventions that improve patient involvement in treatment and care in health care systems. Studies report several benefits of patient involvement interventions and that health care professionals are positive about using them. However, they have not been explored as a collected group of interventions throughout the continuum of care and treatment. In addition, the relationship between patient involvement interventions and the clinical reasoning process of health care professionals has not been thoroughly studied. Design. This mixed-methods study was conducted at Aarhus University Hospital in Denmark between April and November 2022 using interview data from 12 health care professionals and survey data from 420 health care professionals. Informants were medical doctors, nurses, midwives, dietitians, physiotherapists, and occupational therapists who had direct contact with patients during their daily care and treatment. Quantitative data were analyzed using descriptive statistics; qualitative data were analyzed via inductive and deductive content analysis. Results. Communication and interaction were seen as overarching aspects of patient involvement, with patient involvement interventions being defined as concrete tools and methods to enhance health care professionals' explicit clinical reasoning process. Limitations. It is unclear if results are representative of all health care professionals at the hospital or only those with a positive view of patient involvement interventions. Conclusions. Patient involvement interventions are viewed as beneficial for patients and fit with the clinical reasoning of health care professionals. Clinical reasoning may be an active ingredient in the development and implementation of patient involvement interventions. Implications. In practice, health care professionals need training in person-centered communication and the ability to articulate their clinical reasoning explicitly. In research, a more in-depth understanding of the interrelations between patient involvement interventions and clinical reasoning is needed. Highlights: Communication and interaction are the fundamental goals of patient involvement in practice, regardless of which patient involvement intervention is being used.Clinical reasoning is often an unconscious process using tacit knowledge, but the use of patient involvement interventions may be a way for health care professionals (at both individual and group levels) to become more explicit about and aware of their reflections.Clinical reasoning can be viewed as a mechanism of change in the development and implementation of patient involvement interventions.

Recommendations for successful involvement of patient partners in complex intervention research: a collaborative learning process.

BACKGROUND: Patient and public involvement in health-related research is a new discipline in Denmark. In 2021, a national conference titled 'Patient and Public Involvement in Complex Intervention Research' provided a forum for discussion between patient partners, researchers and clinicians on involving patients as partners in complex intervention research. METHODS: We aimed to describe specific challenges to and initiatives for patient partner involvement in order to develop recommendations for creating successful partnerships in complex intervention research. Through a collaborative learning process, 140 researchers identified the most important challenges for them in patient partner involvement and potential initiatives to improve such involvement. At a subsequent workshop, four patient partners identified the challenges and initiatives from their perspective as patient partners. They also gave feedback on the challenges and initiatives suggested by the researchers and helped shape three recommendations for practice. Three of the patient partners were involved in writing this paper. RESULTS: The five most important challenges identified by researchers were time, recruitment, ethics, power and inequality. Between four and seven initiatives to overcome these challenges were suggested. The three most important challenges identified by patient partners were communication, when you get information that is hard to handle and recruitment. They suggested three to four initiatives for improvement. Patient partners confirmed the importance of all the researcher identified challenges when presented with them, they also provided additional comments on the researchers' initiatives. This led to the formation of recommendations for involving patient partners. CONCLUSIONS: A collaborative learning process was shown to be a suitable method for patient partner involvement. Consistency was seen between the challenges and initiatives identified by researchers and patient partners. Based on these observations, three recommendations were developed: (1) create specific programmes that aim to involve all kind of patients (including but limited to vulnerable patients) as patient partners, (2) produce ethical guidelines for the involvement of patient partners, and (3) develop a national strategy for patient partner involvement. To build on these recommendations, a joint workshop with both researchers and patient partners is needed.

Involving patients in complex intervention research is new in Denmark, so there is a need to work out how to do it properly. In 2021, a national conference about this was arranged. There, two workshops were held with 70 complex intervention researchers in each. In the workshops, challenges and steps needed to bring patient partners into complex intervention research were identified. Later, a similar workshop was organized with four patient partners. Their views were similar to what was concluded at the earlier workshops. All challenges and steps to overcome these were discussed between patients and researchers at the last workshop. This resulted in the development of three recommendations to successfully involve patient partners into complex intervention research: (1) create programmes to involve patients who might otherwise be missed as patient partners, (2) produce ethical guidelines for involving patient partners in complex intervention research, and (3) develop a national plan for involving in patient partners.

Neurosurgical patients' preferences and experiences of involvement during hospitalisation.

BACKGROUND: There has been an increased focus on patient involvement in health care worldwide, with studies showing that involving patients in their treatment and care is associated with positive outcomes. However, there is a dearth of knowledge about inpatient preferences and experiences of involvement in neurosurgery in Scandinavian countries. This study aimed to identify inpatients' preferences regarding their involvement in their treatment and the extent to which they experienced being involved in their treatment and care during admission. METHODS: A questionnaire survey was administered in a neurosurgical department. Patients' preferences and experiences regarding their involvement in their treatment and care were assessed using a validated questionnaire. RESULTS: One hundred patients were enrolled in the study. Eighty-two percent of them preferred sharing responsibility for their treatment with their doctor, 16% preferred leaving their treatment decisions entirely up to the doctor; and two percent preferred making the final decision about their treatment independently. The average participation score for information, communication, and participation was 4.08, suggesting that the patients experienced a high level of involvement in their care and treatment. Thirty patients reported preferences for changes during admission, while 25 suggested ideas for improvement. CONCLUSIONS: The patients mostly preferred shared decision-making about their treatment during hospitalization and generally reported high involvement in their treatment and care. The results showed a desire for improved information sharing and dialog among healthcare professionals, patients, and relatives.

Involvement of patients in the research process.

Healthcare research emphasises involvement of patients in the research process, recognizing that this can enhance the relevance, quality, and implementation of research. This article highlights the need for more systematic planning to successfully involve patients in research projects and provides guidance on key aspects that researchers should consider in the planning of involving patients in research. The article accentuates the importance of establishing clear frameworks and guidelines to promote transparency and facilitate implementation.

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.

The impact on severe exacerbations of establishing a cross-sectorial lung team for patients with COPD at high risk of exacerbating: a pilot study.

Background: Exacerbation in Chronic obstructive pulmonary disease (COPD) becomes more frequent with advancing disease severity and often the patients end up being hospitalized. Objective: To evaluate the impact on exacerbations of establishing a cross-sectorial lung team (CLT) for patients with COPD at high risk of exacerbating. Methods: In total, 49 patients with severe COPD were affiliated to a CLT for 6 months. On request from the participants, the CLT was available for telephone calls and home visits day and night to initiate treatment and give advice. Data regarding hospitalizations were collected 3 years prior to the intervention year to predict future numbers of admissions and length of stay. These predictions were compared with the observed data. COPD assessment test (CAT) was conducted before and after intervention. Results: Observed risk of hospitalization (0.54 (95% CI 0.32; 0.90), p = 0.0192)) and length of hospital stay due to COPD (0.41 (95% CI 0.22; 0.76), p = 0.0046)) were significantly lower during the intervention period than predicted. A numerical but non-significant improvement in the total CAT score of 1.10 (95%CI: -0.71;2.91), p = 0.226)) was observed. Conclusion: Affiliation to a CLT seemed to lower the burden of COPD exacerbations in a high-risk population.

How to engage patient partners in health service research: a scoping review protocol.

BACKGROUND: The patients' and the carers' roles in health service research has changed from being solely participants in studies to also being active partners and co-designers in the research process. Research carried out with or by patient partners is an increasingly accepted component of health service research in many countries, but how researchers can best approach engaging patient partners in the research process is still not clear. There is a need for guidance to support researchers when engaging patient partners and assess how such engagement impacts on research outputs. The aim of this paper is to present a protocol for a scoping review of published literature on how to engage patient partners effectively in the research process. Investigating this aim implies examining: a) how to engage patient partners in the research process; and b) what impact such engagement has on research outputs. This scoping review protocol is the first to examine how to engage patient partners effectively across different diseases and research areas. METHODS: A scoping review using a systematic process informed by Arksey and O'Malley's framework will be carried out across six electronic databases using the terms 'patient participation', 'community participation', 'research personnel', 'patient and public involvement' and 'patient partner'. We will include published reviews concerning engagement of patient partners in the research process in healthcare settings, and exclude studies assessing engagement in treatment and healthcare. Two reviewers will screen the titles and abstracts of articles independently for inclusion, and extract data from articles that meet the inclusion criteria. Where there is disagreement, a third reviewer will be consulted to facilitate consensus. The data elicited will include: author and study characteristics; research aims and findings; description of patient engagement in the research process; and assessment impact. Descriptive data and narrative analysis will synthesize findings. DISCUSSION: To understand how to engage patient partners effectively in the research process, the impact of such engagement must be taken into consideration to give a qualified suggestion for future guidance. We hope this review will raise awareness of which common elements constitute effective engagement of patient partners in the research process.