What characterizes a well-functioning person? Perspectives from Scandinavian laypeople and mental health professionals.

Functioning describes how well a person handles life, but the constituents of functioning and its measurement remain subjects of debate among researchers. However, approaches investigating how the concept of functioning is understood among laypeople and practitioners have received less attention. The present study uses a bottom-up approach to explore the concept of functioning among laypeople and mental health professionals in a Scandinavian context. Participants were asked to describe a person doing well in life and a person not doing well in life, resulting in a total of 2,345 statements from 128 laypeople and 78 mental health professionals. Initially, statements were rated according to the meta-concepts of Agency and Communion. This analysis revealed a dominant prevalence of Agency across groups, with laypeople demonstrating a heightened emphasis on Agency when characterizing an individual not doing well in life, suggesting an intensified focus on personal responsibility and achievement when describing dysfunction. Next, an independent semantic domain analysis was used to elucidate and identify distinctive features of functioning within the statements. This revealed a shared conceptualization of functioning among both laypeople and mental health professionals based on three main domains: (1) thriving; (2) daily activities and social roles; and (3) personality features. The findings underscore the importance of considering subjective experiences of thriving, efficacy in managing daily tasks and roles, and personality traits in attaining a comprehensive understanding of functioning levels.

Postponement of elective cardiac surgery: A prospective observational analysis of anxiety, depression, social support and clinical complications.

AIMS: To investigate patients' psychological reactions to postponement of elective cardiac surgery, and whether postponement was associated with increased complications post-operative and while waiting. DESIGN: A single-centre observational prospective cohort study. METHODS: All adult patients referred for elective cardiac surgery during the study period were considered for inclusion. Psychological data were collected using a survey distributed to patients prior to surgery and at 6 months post-operative. Clinical data were obtained from patient records. RESULTS: A total of 83 postponed and 132 non-postponed patients were included. Postponed patients displayed more avoidance behaviour, but only immediately before surgery. Postponed patients maintained their satisfaction with perceived social support, whereas non-postponed patients became more dissatisfied over time. Waiting 0-14 days was associated with increased symptoms of depression before surgery compared to non-postponed patients or those waiting more than 14 days. Surgical complications were the same in both groups. No patients experienced aggravation of their disease leading to urgent or emergent surgery while waiting for surgery. Hospital-related reasons were the most common cause for postponement of surgery. CONCLUSION: Postponement of selected patients is not associated with increased risk of psychological distress or complications related to the patient's disease. REPORTING METHOD: Strengthening the Reporting of Observational Studies in Epidemiology (STROBE). IMPLICATIONS FOR PATIENT CARE: Pre- and post-psychological interventions may be relevant to consider in relation to elective cardiac surgery as it has been shown to positively affect outcome. Organisational/hospital-related reasons are still very common causes for postponement of elective surgeries, and hospital administrations should focus upon eliminating/decreasing this. PUBLIC CONTRIBUTION: Questionnaires filled by patients were used to understand an association between postponement of cardiac surgery and psychological distress.

Prevalence and Phenomenology of Sensory Experiences of a Deceased Spouse: A Survey of Bereaved Older Adults.

Sensory and quasi-sensory experiences of the deceased (SED), also called bereavement hallucinations, are common in bereavement, but research detailing these experiences is limited. Methods: An in-depth survey of SED was developed based on existing research, and 310 older adults from the general Danish population participated in the study 6-10 months after their spouse died. Results: SED were reported by 42% of the participants with wide-ranging phenomenological features across sensory-modalities. In particular, seeing and hearing the deceased spouse was experienced as very similar to the couple's everyday contacts before death. SED were endorsed as positive by a majority of experiencers, and the experiences were often shared with family and friends. Discussion: SED are conceptualized as social and relational phenomena, which may comfort the surviving spouse in late-life bereavement, but also provide tangible help to some experiencers. In clinical practice, SED may be considered a potential resource for the therapeutic grief process.

Sensory experiences of one's deceased spouse in older adults: An analysis of predisposing factors.

Objectives This study focuses on pre-disposing factors associated with sensory experiences of the deceased (SED), also called bereavement hallucinations. Even though SED are common among older widowed adults, our knowledge of these experiences is still limited.Method Survey responses were obtained from 310 older widowed participants (M = 70.05 ± 8.39), complemented with data from Danish national registers.Results Hierarchical logistic regression analysis revealed four significant pre-disposing factors: prior experiences of SED in the context of previous significant bereavements (OR = 4.72), a history of interpersonal trauma (OR = 5.8), high pre-death relationship closeness (OR = 2.76) and stronger religious/spiritual worldview (OR = 1.12). No association to registered mental health diagnosis was identified.Conclusion: SED may be considered an interpersonal experience, which may be more likely to occur if the pre-death relationship is described as very close and if the bereaved has previously experienced interpersonal trauma. We argue that SED should not necessarily be considered an indication of neurodegenerative or psychiatric diseases.

Are Sensory Experiences of One's Deceased Spouse Associated with Bereavement-Related Distress?

Following late-life spousal bereavement, sensory and quasi-sensory experiences of the deceased (SED) are commonly reported. This longitudinal study examined SED among 310 older widowed adults 6-10 (T1) and 18-20 (T2) months post loss. Reports of SED in the first 6-10 months after loss were associated with higher symptom levels of prolonged grief, post-traumatic stress, and loneliness at T1. Experiencers of SED were more likely to experience symptoms of prolonged grief and post-traumatic stress above cut-off scores at T1. Importantly, only a minority of the experiencers of SED displayed these elevated levels of bereavement-related distress. In addition, employing multi-level-modeling, a similar trajectory of decreasing bereavement-related distress over time was found for both experiencers and non-experiencers of SED. We argue that SED may be one of several potential reactions to bereavement, which should not be seen as an indicator of grief complications per se.

Integration of Rehabilitation Activities Into Everyday Life Through Telerehabilitation: Qualitative Study of Cardiac Patients and Their Partners.

BACKGROUND: Implementation of cardiac rehabilitation has not been optimal, with patient participation rates below 50%. Factors that contribute to cardiac patients' lack of participation in rehabilitation programs are patient motivation, logistical difficulties in getting to the rehabilitation facilities, lack of psychosocial elements, and individualization of activities in the rehabilitation programs. Telerehabilitation has been proposed as a new way to address the challenge of engaging and motivating cardiac patients and their partners to participate in rehabilitation. OBJECTIVE: The aim of this study was to explore the experiences of cardiac patients and their partners of participating in the Teledialog Telerehabilitation Program (TTP). The Teledialog program consisted of a digital rehabilitation plan, transmission of health data from patient's home to hospital and health care center, and an interactive Web portal with information and training videos. METHODS: This case study used a theoretical approach combining the "community of practice" approach and self-determination theory. A triangulation of data collection techniques was used, including documents, participant observation (72 hours), and qualitative interviews with cardiac patients and their partners enrolled in the telerehabilitation group. A total of 14 cardiac patients, 12 patient spouses/partners, and 1 son participated in the study. The participants were interviewed at enrollment in the telerehabilitation program and after 12 weeks of participation in the program. Interview data were analyzed using NVivo 11.0. RESULTS: Patients and their partners found the Web portal ActiveHeart.dk and the electronic rehabilitation (e-rehabilitation) plan to be helpful tools for health education, coordinating rehabilitation goals, creating an overview of the data, and ensuring continuity in the rehabilitation process. The patients felt that the TTP treated them as individuals, gave them a sense of autonomy, and provided enhanced relatedness to health care professionals and partners and a sense of competence as active participants in their own rehabilitation process. Some patients missed being part of a community of practice with other cardiac patients and did not use the Web forum. Patients' partners found that the telerehabilitation program gave them a sense of security and helped them balance their involvement as a partner to the patient and not push the patient too hard. CONCLUSIONS: Cardiac patients and their partners found telerehabilitation technologies a useful digital toolbox in the rehabilitation process. Telerehabilitation motivated the patients to integrate rehabilitation activities into their work schedule and everyday life and made them feel like unique individuals. Participating in the Teledialog Telerehabilitation Program might not be a suitable strategy for all cardiac patients. Being a patient's partner in the telerehabilitation program was associated with a heightened sense of security, navigation between active involvement in the rehabilitation process, being an equal partner, and not pushing the patient too hard.

Bereavement hallucinations after the loss of a spouse: Associations with psychopathological measures, personality and coping style.

Bereavement hallucinations (BHs) were assessed in 175 conjugally bereaved participants 4 years post loss, to explore whether BHs were: (a) associated with psychological distress and (b) predicted by sociodemographic variables, personality and/or coping style. Participants with BHs scored significantly higher than those without BHs on prolonged grief, post-traumatic stress, depression symptoms, and emotional loneliness. Hierarchical logistic regression analysis showed avoidant coping, openness to experience, and length of marriage to significantly predict BHs, while detached coping was negatively associated with BHs. This study suggests that BHs may be an indicator of psychological distress in bereavement.

Resistance to change: Role of relationship and communal coping for coronary heart disease patients and their partners in making lifestyle changes.

BACKGROUND: Lifestyle behaviours are important risk factors for coronary heart disease (CHD) and, hence, motivation for lifestyle changes is suggested to be a key factor in the success of cardiac rehabilitation and secondary prevention programmes. The motivation for changing lifestyle among people with CHD may be influenced by those with whom they have long-term, intimate relationships. AIMS: This study explores the role of the relationship between people with CHD and those closest to them in making lifestyle changes. This includes investigating if patients and partners experience autonomy, competence, and relatedness, and what role communal, i.e. relationship-centred coping serves in relation to patients' health behaviour. METHODS: The study is based on semi-structured, in-depth interviews with 10 couples; people who have experienced acute coronary syndrome, and their partners. Participants had diverse histories of disease and social backgrounds. A three-stage interview process was undertaken including focus group interviews, couple interviews and individual interviews. A thematic analysis, inspired by the self-determination theory and the interdependence theory, was conducted. RESULTS: Communal coping is evident in various forms, and at different levels, among people with CHD and their partners. Satisfaction with new lifestyle, ownership of change, confidence in ability to change, and emotional distress are all factors that affect how couples deal with lifestyle changes in the aftermath of CHD. CONCLUSIONS: Rehabilitation efforts, aimed at lifestyle changes, need to address each individual, as well as the dyadic interaction within couples. Incorporating a dyadic perspective in the rehabilitation process may lead to a reduction in motivational barriers to lifestyle changes.

Telemedicine in Greenland: Citizens' Perspectives.

BACKGROUND: Telemedicine may have the possibility to provide better access to healthcare delivery for the citizens. Telemedicine in arctic remote areas must be tailored according to the needs of the local population. Therefore, we need more knowledge about their needs and their view of telemedicine. OBJECTIVE: The aim of this study has been to explore how citizens living in the Greenlandic settlements experience the possibilities and challenges of telemedicine when receiving healthcare delivery in everyday life. MATERIALS AND METHODS: Case study design was chosen as the overall research design. Qualitative interviews (n = 14) were performed and participant observations (n = 80 h) carried out in the local healthcare center in the settlements and towns. A logbook was kept and updated each day during the field research in Greenland. Observations were made of activities in the settlements. FINDINGS: Data collected on citizens' views about the possibilities of using telemedicine in Greenland revealed the following findings: Greenlandic citizens are positive toward telemedicine, and telemedicine can help facilitate improved access to healthcare for residents in these Greenlandic settlements. Regarding challenges in using telemedicine in Greenland, the geographical and cultural context hinders accessibility to the Greenlandic healthcare system, and telemedicine equipment is not sufficiently mobile. CONCLUSION: Greenlandic citizens are positive toward telemedicine and regard telemedicine as a facilitator for improved access for healthcare in the Greenlandic settlements. We have identified challenges, such as geographical and cultural context, that hinder accessibility to the Greenlandic healthcare system.

Personalized Telehealth in the Future: A Global Research Agenda.

As telehealth plays an even greater role in global health care delivery, it will be increasingly important to develop a strong evidence base of successful, innovative telehealth solutions that can lead to scalable and sustainable telehealth programs. This paper has two aims: (1) to describe the challenges of promoting telehealth implementation to advance adoption and (2) to present a global research agenda for personalized telehealth within chronic disease management. Using evidence from the United States and the European Union, this paper provides a global overview of the current state of telehealth services and benefits, presents fundamental principles that must be addressed to advance the status quo, and provides a framework for current and future research initiatives within telehealth for personalized care, treatment, and prevention. A broad, multinational research agenda can provide a uniform framework for identifying and rapidly replicating best practices, while concurrently fostering global collaboration in the development and rigorous testing of new and emerging telehealth technologies. In this paper, the members of the Transatlantic Telehealth Research Network offer a 12-point research agenda for future telehealth applications within chronic disease management.

Cost-Utility Analysis of a Cardiac Telerehabilitation Program: The Teledialog Project.

BACKGROUND: Cardiac rehabilitation can reduce mortality of patients with cardiovascular disease, but a frequently low participation rate in rehabilitation programs has been found globally. The objective of the Teledialog study was to assess the cost-utility (CU) of a cardiac telerehabilitation (CTR) program. The aim of the intervention was to increase the patients' participation in the CTR program. At discharge, an individualized 3-month rehabilitation plan was formulated for each patient. At home, the patients measured their own blood pressure, pulse, weight, and steps taken for 3 months. MATERIALS AND METHODS: The analysis was carried out together with a randomized controlled trial with 151 patients during 2012-2014. Costs of the intervention were estimated with a health sector perspective following international guidelines for CU. Quality of life was assessed using the 36-Item Short Form Health Survey. RESULTS: The rehabilitation activities were approximately the same in the two groups, but the number of contacts with the physiotherapist was higher among the intervention group. The mean total cost per patient was €1,700 higher in the intervention group. The quality-adjusted life-years (QALYs) gain was higher in the intervention group, but the difference was not statistically significant. The incremental CU ratio was more than €400,000 per QALY gained. CONCLUSIONS: Even though the rehabilitation activities increased, the program does not appear to be cost-effective. The intervention itself was not costly (less than €500), and increasing the number of patients may show reduced costs of the devices and make the CTR more cost-effective. Telerehabilitation can increase participation, but the intervention, in its current form, does not appear to be cost-effective.

A Digital Platform (Telepalliation) for Patients in Palliative Care and Their Relatives: Protocol for a Multimethod Randomized Controlled Trial.

BACKGROUND: The World Health Organization defines end-of-life palliative care as "prevention and relief of suffering, by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual." Over 20 million people worldwide are in need of palliative care. In Denmark, palliative care is given at a general and a specialist level. The general level comprises health care professionals (HCPs) who do not perform palliative care full-time. The specialist level comprises specialized palliative care (SPC), where HCPs perform palliative care full-time. In total, 20%-30% of patients who need palliative care are referred to SPC. Challenges with SPC include a short time span from referral to end of life, patients who are very ill and may therefore find it hard to travel to an outpatient clinic, and the SPC unit having a relatively small staff. The need for SPC is expected to rise, as the number of patients dying from terminal diseases is increasing. Telehealth has been successfully implemented in different home care settings, including palliative care. OBJECTIVE: The aim of the study is to present the research design of the clinical testing of a telepalliation program by the use of a digital platform for patients in palliative care and their relatives. METHODS: The telepalliation program will be conducted as a multimethod randomized controlled trial. The intervention group will follow the telepalliation program, while the control group will follow the traditional standard of care program for palliative care. The primary outcome of the study is increased quality of life. Secondary outcomes include enhanced sense of security; reduced experience of pain; satisfactory experiences of patients and relatives with the TelePal platform and degree of satisfaction in being a part of the program; experiences with the use of the TelePal platform on the part of HCPs and the professionals' experiences of being a part of the program; the use of a cross-sector communication platform and the telepalliation program by patients, relatives, and HCPs; and the projected lower cost of health care services. These outcomes will be assessed using questionnaires, data generated by digital technologies, and semistructured interviews. RESULTS: The collection of data began in May 2021 and will be completed in August 2024. The results of the study will be published in peer-reviewed journals and presented at international conferences. Results from the telepalliation program are expected to be published by fall 2024. CONCLUSIONS: The expected outcomes of the study are increased quality of life and increased sense of security. We also expect that the study will have a clinical impact on future telepalliation for those patients who are referred to a palliative team. TRIAL REGISTRATION: ClinicalTrials.gov NCT04995848; https://clinicaltrials.gov/study/NCT04995848. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/49946.

"Future patient II" telerehabilitation for patients with heart failure: Protocol for a randomized controlled trial.

Background: Heart failure is a global problem affecting millions of people worldwide. Current care of heart failure patients follows standard protocols and often overlooks the patients' specific needs, which leads to low compliance in the rehabilitation phase. Telerehabilitation, where the patients communicate with health care professionals about their rehabilitation program and monitor their vital signs, aims to increase the degree of compliance as well as enhancing their quality of life. Objective: The aim of this study is to investigate whether application of the Future Patient Telerehabilitation Program II can improve the health-related quality of life for patients with heart failure. Methods: A randomized controlled trial will be conducted. A total of 70 patients will be enrolled, 35 in the intervention group, 35 in the control group. The intervention group will follow an add-on to traditional care, while the control group will follow the conventional Danish cardiac rehabilitation program, which is based on periodic visits to the clinic. The patients will be followed for a period of six months. The intervention group will have access to an online HeartPortal and will use various home-based devices for self-monitoring. The primary outcome to be investigated is health-related quality of life as measured by the EuroQol-5 Dimension. Secondary outcomes are the number of visits to the outpatient clinic, number of readmissions and number of tele-communications contacts (phone and video) with health care professionals. The primary and secondary outcomes will be assessed using questionnaires and through the data generated by digital technologies for self-monitoring. Results: Enrolment began in August 2020. The results will be published in peer-reviewed journals. Results from the Future Patient II Telerehabilitation program are expected to be published in 2024. Discussion: This study is a further development of the Future Patient Telerehabilitation I study, and it is expected to explore the use of video consultation and a weight calculator in relation to telerehabilitation as well as the quality of life for heart failure patients. Conclusion: The expected outcomes are increased quality of life, increased number of phone- and video-consultations with health-care professionals, and the enhanced ability of patients to manage their own disease with the use of a calculator for weight.

Association between psychological measures and brain natriuretic peptide in heart failure patients.

OBJECTIVE: Brain natriuretic peptide (BNP) is a promising marker for heart failure diagnosis and prognosis. Although psychological factors also influence heart failure (HF) prognosis, this might be attributed to confounding by BNP. Our aim was to examine the association between multiple psychological markers using a prospective study design with repeated N-terminal pro-B-type natriuretic peptide (NT-proBNP) measurements. DESIGN: The sample comprised 94 outpatients with systolic HF (80% men; mean age =62.2 ± 9.3). The psychological markers (i.e., anxiety, depression, and Type D personality), assessed with the Hospital Anxiety and Depression Scale (HADS), the Beck Depression Inventory (BDI), and the Type D Scale (DS14) were assessed only at baseline. Plasma NT-proBNP levels were measured at baseline and at 9 months. RESULTS: The prevalence of anxiety, depression, and Type D personality at baseline was 23.4% (HADS-A), 17.0% (HADS-D), 46.6% (BDI), and 21.3% (DS14), respectively. At baseline, none of the psychological risk markers were associated with NT-proBNP levels (all p >.05). In the subset of patients with scores on psychological risk markers both at baseline and at 9 months, there were no association between anxiety (p =0.44), depression (HADS-D: p =0.90; BDI: p =0.85), and Type D (p =0.63) with NT-proBNP levels using ANOVA for repeated measures. CONCLUSIONS: Our findings indicate that measures frequently used in HF to assess psychological risk markers are unconfounded by NT-proBNP. Futher studies are warranted to replicate these findings and examine whether psychological risk markers are independent predictors of prognosis in HF or an artifact that may be attributed to other biological or behavioral mechanisms.

Video and social rehabilitation of persons with mental illness helps to structure everyday life: a qualitative study.

BACKGROUND: Living with a mental disorder has a significant impact on everyday life. In 2018, one out of every six adults, equivalent to 17.3% of the adult population of the European Union, had symptoms of mental disorders. This paper focus on social rehabilitation of patients with mental illness who have been discharged from hospital and who use video communication technologies in their rehabilitation in collaboration with their social worker. The aim of this study has been to explore the experiences of persons with mental illnesses who participated in a long-term video-based tele-social rehabilitation program, the Video Assist. METHODS: The overall research strategy is the case study method. Data collection techniques are based on triangulation. Document analysis has been performed. Participant observation in homes of persons with mental using video with social workers (168 hours). Semi structured qualitative interviews with persons with mental illness (n=13) has been conducted lasting between 30 and 60 minutes. Data were analyzed using NVivo 10.0. RESULTS: Experiences of persons with mental illness participating in the tele-social rehabilitation program are in themes: user friendly video technology, video created a new means of communication between citizen and social worker, feeling of surveillance by having the technology in the home, development of new coping strategies in everyday life and need for psychosocial support and training via the video technology. CONCLUSIONS: Persons with mental illness who are in a recovery process find that participating in a tele-social-rehabilitation program gives them a sense of mobility, security, surveillance but the ability to develop new coping strategies in their everyday lives. Future research is needed on long-term effects of tele-social rehabilitation for persons with mental illness.

Increased motivation for and use of digital services in heart failure patients participating in a telerehabilitation program: a randomized controlled trial.

Background: eHealth literacy (eHL) may be an important factor in the adoption of telerehabilitation. However, little is known about how telerehabilitation affects patients' eHL. The current study evaluated changes over time in eHL for heart failure (HF) patients in a telerehabilitation program (the Future Patient Program) compared to a traditional rehabilitation program. Methods: As part of a randomized controlled trial comparing telerehabilitation with traditional rehabilitation, 137 HF patients completed the eHealth Literacy Questionnaire (eHLQ) at 6 and 12 months of their respective rehabilitation programs. Results: At 6 months, the telerehabilitation group indicated higher levels of 'using technology to process health information' and 'motivated to engage with digital services'. This difference was consistent over time, and we found no other differences between groups or over time with regard to eHL. Conclusions: Providing a digital toolbox for processing health information to HF patients may aid in increasing their eHL, motivation, and ability to engage with digital services in HF patients. Especially, if the technology is designed to support patient needs in terms of the educational content of the program. Preferably technology should be provided early on in the rehabilitation process to ensure optimal outcome. Trial Registration: The study was registered in ClinicalTrials.gov (NCT03388918).

Motivating patients in cardiac rehabilitation programs: A multicenter randomized controlled trial.

Concerns have been raised about motivation and psychological distress when implementing telerehabilitation in patients with heart failure. The current study compared conventional and telerehabilitation in two groups (n=67; n=70) of patients with heart failure at 0, 6, and 12 months on measures of motivation (Self-Determination Theory measures) and psychological distress (Hospital Anxiety and Depression scale). We found no significant changes in motivation across groups, although our telerehabilitation group had a slightly lower level of controlled motivation and higher levels of relatedness. In addition, there were no differences between groups with regard to psychological distress. This study demonstrates that telerehabilitation motivates patients with heart failure to the same degree as conventional rehabilitation, and that telerehabilitation is not associated with increased psychological distress. As such, telerehabilitation offers an alternative to conventional rehabilitation and addresses some of the barriers for participating in rehabilitation identified in the literature.

Distress and anxiety following postponed cardiac surgery prior to and during the COVID-19 pandemic.

INTRODUCTION: Recently, the COVID-19 pandemic has caused postponements of elective cardiac surgery. We hypothesised that postponements due to the pandemic were associated with higher levels of psychological distress than prepandemic postponements. METHODS: A prospective, observational cohort study was conducted among patients in whom elective cardiac surgery was postponed. Patients who received information regarding a new date of surgery prior to the pandemic were compared with patients postponed during the pandemic without information regarding a new date of surgery. Data were collected from patient records, validated questionnaires and interviews. RESULTS: Out of 55 postponed patients, 21 experienced prepandemic postponement. No significant differences were observed between groups regarding the psychological measures before their rescheduled operation. However, patients in both groups reported high levels of anxiety and depression with > 60% indicative of potentially positive diagnoses. No differences were found in mortality across groups and no patients developed severe complications. Interviews showed that patients in the COVID-19 group felt immediate relief at postponement and engaged in a meaning-making process with respect to their ability to tolerate postponement in order to reassure themselves and their relatives. CONCLUSIONS: No significant differences were found in psychological distress between the patients of the two groups. However, both groups experienced high levels of psychological distress. It remains unknown whether these results may be extrapolated to other surgical fields. FUNDING: none. TRIAL REGISTRATION: not relevant.

The Danish Future Patient Telerehabilitation Program for Patients With Atrial Fibrillation: Design and Pilot Study in Collaboration With Patients and Their Spouses.

BACKGROUND: Atrial fibrillation (AF) is the most common cardiac arrhythmia and is predicted to more than double in prevalence over the next 20 years. Tailored patient education is recommended as an important aspect of AF care. Current guidelines emphasize that patients become more active participants in the management of their own disease, yet there are no rehabilitation programs for patients with AF in the Danish health care system. Through participatory design, we developed the Future Patient Telerehabilitation (TR) Programs, A and B, for patients with AF. The 2 programs are based on HeartPortal and remote monitoring, together with educational modules. OBJECTIVE: The aim of this pilot study is to evaluate and compare the feasibility of the 2 programs of TR for patients with AF. METHODS: This pilot study was conducted between December 2019 and March 2020. The pilot study consisted of testing the 2 TR programs, A and B, in two phases: (1) treatment at the AF clinic and (2) TR at home. The primary outcome of the study was the usability of technologies for self-monitoring and the context of the TR programs as seen from patients' perspectives. Secondary outcomes were the development of patients' knowledge of AF, development of clinical data, and understanding the expectations and experiences of patients and spouses. Data were collected through interviews, questionnaires, and clinical measurements from home monitoring devices. Statistical analyses were performed using the IBM SPSS Statistics version 26. Qualitative data were analyzed using NVivo 12.0. RESULTS: Through interviews, patients articulated the following themes about participating in a TR program: usefulness of the HeartPortal, feeling more secure living with AF, community of practice living with AF, and measuring heart rhythm makes good sense. Through interviews, the spouses of patients with AF expressed that they had gained increased knowledge about AF and how to support their spouses living with AF in everyday life. Results from the responses to the Jessa AF Knowledge Questionnaire support the qualitative data, as they showed that patients in program B acquired increased knowledge about AF at follow-up compared with baseline. No significant differences were found in the number of electrocardiography recordings between the 2 groups. CONCLUSIONS: Patients with AF and their spouses were positive about the TR program and they found the TR program useful, especially because it created an increased sense of security, knowledge about mastering their symptoms, and a community of practice linking patients with AF and their spouses and health care personnel. To assess all the benefits of the Future Patient-TR Program for patients with AF, it needs to be tested in a comprehensive randomized controlled trial. TRIAL REGISTRATION: ClinicalTrials.gov NCT04493437; https://clinicaltrials.gov/ct2/show/NCT04493437.

Patient-Reported Outcomes From Patients With Heart Failure Participating in the Future Patient Telerehabilitation Program: Data From the Intervention Arm of a Randomized Controlled Trial.

BACKGROUND: More than 37 million people worldwide have been diagnosed with heart failure, which is a growing burden on the health sector. Cardiac rehabilitation aims to improve patients' recovery, functional capacity, psychosocial well-being, and health-related quality of life. However, cardiac rehabilitation programs have poor compliance and adherence. Telerehabilitation may be a solution to overcome some of these challenges to cardiac rehabilitation by making it more individualized. As part of the Future Patient Telerehabilitation program, a digital toolbox aimed at enabling patients with heart failure to monitor and evaluate their own current status has been developed and tested using data from a patient-reported outcome questionnaire that the patient filled in every alternate week for 1 year. OBJECTIVE: The aim of this study is to evaluate the changes in quality of life and well-being among patients with heart failure, who are participants in the Future Patient Telerehabilitation program over the course of 1 year. METHODS: In total, 140 patients were enrolled in the Future Patient Telerehabilitation program and randomized into either the telerehabilitation group (n=70) or the control group (n=70). Of the 70 patients in the telerehabilitation group, 56 (80.0%) answered the patient-reported outcome questionnaire and completed the program, and these 56 patients comprised the study population. The patient-reported outcomes consisted of three components: (1) questions regarding the patients' sleep patterns assessed using the Spiegel Sleep Questionnaire; (2) measurements of physical limitations, symptoms, self-efficacy, social interaction, and quality of life assessed using the Kansas City Cardiomyopathy Questionnaire in 10 dimensions; and (3) 5 additional questions regarding psychological well-being that were developed by the research group. RESULTS: The changes in scores during 1 year of the study were examined using 1-sample Wilcoxon signed-rank tests. There were significant differences in the scores for most of the slopes of the scores from the dimensions of the Kansas City Cardiomyopathy Questionnaire (P<.05). CONCLUSIONS: There was a significant increase in clinical and social well-being and quality of life during the 1-year period of participating in a telerehabilitation program. These results suggest that patient-reported outcome questionnaires may be used as a tool for patients in a telerehabilitation program that can both monitor and guide patients in mastering their own symptoms. TRIAL REGISTRATION: ClinicalTrials.gov NCT03388918; https://clinicaltrials.gov/ct2/show/NCT03388918.