Evaluation of the nurse-assisted eHealth intervention 'eHealth@Hospital-2-Home' on self-care by patients with heart failure and colorectal cancer post-hospital discharge: protocol for a randomised controlled trial.

BACKGROUND: Patients with heart failure (HF) and colorectal cancer (CRC) are prone to comorbidity, a high rate of readmission, and complex healthcare needs. Self-care for people with HF and CRC after hospitalisation can be challenging, and patients may leave the hospital unprepared to self-manage their disease at home. eHealth solutions may be a beneficial tool to engage patients in self-care. METHODS: A randomised controlled trial with an embedded evaluation of intervention engagement and cost-effectiveness will be conducted to investigate the effect of eHealth intervention after hospital discharge on the self-efficacy of self-care. Eligible patients with HF or CRC will be recruited before discharge from two Norwegian university hospitals. The intervention group will use a nurse-assisted intervention-eHealth@Hospital-2-Home-for six weeks. The intervention includes remote monitoring of vital signs; patients' self-reports of symptoms, health and well-being; secure messaging between patients and hospital-based nurse navigators; and access to specific HF and CRC health-related information. The control group will receive routine care. Data collection will take place before the intervention (baseline), at the end of the intervention (Post-1), and at six months (Post-2). The primary outcome will be self-efficacy in self-care. The secondary outcomes will include measures of burden of treatment, health-related quality of life and 30- and 90-day readmissions. Sub-study analyses are planned in the HF patient population with primary outcomes of self-care behaviour and secondary outcomes of medication adherence, and readmission at 30 days, 90 days and 6 months. Patients' and nurse navigators' engagement and experiences with the eHealth intervention and cost-effectiveness will be investigated. Data will be analysed according to intention-to-treat principles. Qualitative data will be analysed using thematic analysis. DISCUSSION: This protocol will examine the effects of the eHealth@ Hospital-2-Home intervention on self-care in two prevalent patient groups, HF and CRC. It will allow the exploration of a generic framework for an eHealth intervention after hospital discharge, which could be adapted to other patient groups, upscaled, and implemented into clinical practice. TRIAL REGISTRATION: Clinical trials.gov (ID 301472).

eHealth interventions to support colorectal cancer patients' self-management after discharge from surgery-an integrative literature review.

INTRODUCTION: Colorectal cancer (CRC) creates elevated self-management demands and unmet support needs post-discharge. Follow-up care through eHealth post-primary surgery may be an effective means of supporting patients' needs. This integrative review describes the evidence regarding eHealth interventions post-hospital discharge focusing on delivery mode, user-interface and content, patient intervention adherence, impact on patient-reported outcomes and experiences of eHealth. METHODS: A university librarian performed literature searches in 2021 using four databases. After screening 1149 records, the authors read 30 full-text papers and included and extracted data from 26 papers. Two authors analysed the extracted data using the 'framework synthesis approach'. RESULTS: The 26 papers were published between 2012 and 2022. The eHealth interventions were mainly delivered by telephone with the assistance of healthcare professionals, combined with text messages or video conferencing. The user interfaces included websites, applications and physical activity (PA) trackers. The interventions comprised the monitoring of symptoms or health behaviours, patient information, education and counselling. Evidence showed a better psychological state and improved PA. Patients reported high satisfaction with eHealth. However, patient adherence was inadequately reported. CONCLUSIONS: eHealth interventions may positively impact CRC patients' anxiety and PA regardless of the user interface. Patients prefer technology combined with a human element.

Assessing a nurse-assisted eHealth intervention posthospital discharge in adult patients with non-communicable diseases: a protocol for a feasibility study.

INTRODUCTION: A growing number of patients with non-communicable diseases (NCDs), such as heart failure (HF) and colorectal cancer (CRC), are prone to comorbidity, a high rate of readmissions and complex healthcare needs. An eHealth intervention, however, could potentially ameliorate the increasing burdens associated with NCDs by helping to smoothen patient transition from hospital to home and by reducing the number of readmissions. This feasibility study therefore aims to assess the feasibility of a nurse-assisted eHealth intervention posthospital discharge among patients with HF and CRC, while also examining the preliminary clinical and behavioural outcomes of the intervention before initiating a full-scale randomised controlled trial. The recruitment ended in January 2023. METHODS AND ANALYSIS: Twenty adult patients with HF and 10 adult patients with CRC will be recruited from two university hospitals in Norway. Six hospital-based nurse navigators (NNs) will offer support during the transition phase from hospital to home by using a solution for digital remote care, Dignio Connected Care. The patients will use the MyDignio application uploaded to an iPad for 30 days postdischarge. The interactions between patients and NNs will then be assessed through direct observation and qualitative interviews in line with a think-aloud protocol. Following the intervention, semistructured interviews will be used to explore patients' experiences of eHealth support and NNs' experiences of eHealth delivery. The feasibility testing will also comprise a post-test of the Post-System Usability Questionnaire and pretesting of patient-reported outcomes questionnaires, as well as an inspection of user data collected from the software. ETHICS AND DISSEMINATION: The study has been approved by the Norwegian Centre for Research Data (ID.NO: 523386). All participation is based on informed, written consent. The results of the study will be published in open-access, peer-reviewed journals and presented at international and national scientific conferences and meetings.

Designing a Future eHealth Service for Posthospitalization Self-management Support in Long-term Illness: Qualitative Interview Study.

BACKGROUND: For patients with noncommunicable diseases (NCDs; eg, heart failure [HF] and colorectal cancer [CRC]), eHealth interventions could meet their posthospital discharge needs and strengthen their ability to self-manage. However, inconclusive evidence exists regarding how to design eHealth services to meet the complex needs of patients. To foster patient acceptability and ensure the successful development and implementation of eHealth solutions, it is beneficial to include different stakeholders (ie, patients and health care professionals) in the design and development phase of such services. The involvement of different stakeholders could contribute to ensuring feasible, acceptable, and usable solutions and that eHealth services are developed in response to users' supportive care needs when transitioning to home after hospitalization. This study is the first step of a larger complex intervention study aimed at meeting the postdischarge needs of 2 NCD populations. OBJECTIVE: This study aimed to explore the perspectives of patients with HF and CRC and health care professionals on patient self-management needs following hospital discharge and investigate how a future nurse-assisted eHealth service could be best designed to foster patient acceptability, support self-management, and smooth the transition from hospital to home. METHODS: A qualitative, explorative, and descriptive approach was used. We conducted 38 semistructured interviews with 10 patients with HF, 9 patients surgically treated for CRC with curative intent, 6 registered nurses recruited as nurse navigators of a planned eHealth service, and 13 general practitioners experienced in HF and CRC treatment and follow-up care. Patients were recruited conveniently from HF and CRC outpatient clinics, and the nurses were recruited from the cardiology and gastro-surgical departments at a university hospital in the southwest of Norway. The general practitioners were recruited from primary care in surrounding municipalities. Semistructured interview guides were used for data collection, and the data were analyzed using thematic analysis. RESULTS: In total, 3 main themes were derived from the data analysis: expecting information, reassurance, and guidance when using eHealth for HF and CRC self-management; expecting eHealth to be comprehensible, supportive, and knowledge promoting; and recognizing both the advantages and disadvantages of eHealth for HF and CRC self-management. The data generated from this interview study depicted the diverse needs for self-management support of patients with CRC and HF after hospital discharge. In addition, valuable suggestions were identified regarding the design and content of the eHealth service. However, participants described both possible advantages and disadvantages of a remote eHealth service. CONCLUSIONS: This study is the first step in the development of an eHealth service for posthospitalization self-management support for long-term illnesses. It concerns patients' supportive care needs and user requirements of an eHealth service. The findings of this study may add value to the planning and development of eHealth interventions for patients with NCDs.

Posthospitalization Follow-Up of Patients With Heart Failure Using eHealth Solutions: Restricted Systematic Review.

BACKGROUND: Heart failure (HF) is a clinical syndrome with high incidence rates, a substantial symptom and treatment burden, and a significant risk of readmission within 30 days after hospitalization. The COVID-19 pandemic has revealed the significance of using eHealth interventions to follow up on the care needs of patients with HF to support self-care, increase quality of life (QoL), and reduce readmission rates during the transition between hospital and home. OBJECTIVE: The aims of this review are to summarize research on the content and delivery modes of HF posthospitalization eHealth interventions, explore patient adherence to the interventions, and examine the effects on the patient outcomes of self-care, QoL, and readmissions. METHODS: A restricted systematic review study design was used. Literature searches and reviews followed the (PRISMA-S) Preferred Reporting Items for Systematic Reviews and Meta-Analyses literature search extension checklist, and the CINAHL, MEDLINE, Embase, and Cochrane Library databases were searched for studies published between 2015 and 2020. The review process involved 3 groups of researchers working in pairs. The Mixed Methods Appraisal Tool was used to assess the included studies' methodological quality. A thematic analysis method was used to analyze data extracted from the studies. RESULTS: A total of 18 studies were examined in this review. The studies were published between 2015 and 2019, with 56% (10/18) of them published in the United States. Of the 18 studies, 16 (89%) were randomized controlled trials, and 14 (78%) recruited patients upon hospital discharge to eHealth interventions lasting from 14 days to 12 months. The studies involved structured telephone calls, interactive voice response, and telemonitoring and included elements of patient education, counseling, social and emotional support, and self-monitoring of symptoms and vital signs. Of the 18 studies, 11 (61%) provided information on patient adherence, and the adherence levels were 72%-99%. When used for posthospitalization follow-up of patients with HF, eHealth interventions can positively affect QoL, whereas its impact is less evident for self-care and readmissions. CONCLUSIONS: This review suggests that patients with HF should receive prompt follow-up after hospitalization and eHealth interventions have the potential to improve these patients' QoL. Patient adherence in eHealth follow-up trials shows promise for successful future interventions and adherence research. Further studies are warranted to examine the effects of eHealth interventions on self-care and readmissions among patients with HF.

Burden of treatment in patients with chronic heart failure - A cross-sectional study.

BACKGROUND: Patients with heart failure (HF) must manage both a demanding treatment regimen and self-care, which may lead to a burden of treatment. The purpose of this study was to assess the levels of burdens from treatment and self-care and its associations with psychological distress and health-related quality of life. METHODS: In this cross-sectional study we collected self-report data from 125 patients diagnosed with HF, New York Heart Association classification II and III, who received care in a nurse-led HF outpatient clinic. Clinical variables were collected from the medical records. Data analyses comprised descriptive statistics and partial correlations. RESULTS: The participants mean age was 67 (±9.2), most were male (74,4%) and the majority had reduced ejection fraction (EF 35.4 ± 10.8). The highest mean burden scores emerged for insufficient medical information (34.65, range 0-86), difficulty with health care service (34.57, range 0-81), and physical and mental fatigue (34.12, range 0-90). Significant positive associations were observed between physical and mental fatigue from self-care, role and social activity limitation, and psychological distress, and health-related QoL. CONCLUSION: Burden of treatment is an important aspect of HF treatment as it contributes to valuable knowledge on patient workload. This study emphasizes the need to simplify and tailor the treatment regimens to alleviate the burden.

A qualitative study of living with the burden from heart failure treatment: Exploring the patient capacity for self-care.

Aim: To explore how patients with heart failure perceive their capacity to manage treatment and self-care. Design: A qualitative descriptive study. Methods: Patients (N = 17) were recruited from a nurse-led heart failure outpatient clinic from May-August 2017. Data were collected through individual semi-structured interviews and analysed using systematic text condensation. Results: Three main themes were identified as follows: "Personal characteristics," "Coping strategies" and "Emotional and informative support." The first main theme contained the subthemes "inherent strength" and "maintenance of a positive attitude." The second main theme included the subthemes "selective denial," "ability to adapt by setting new goals" and "careful selection of information." The third main theme contained the subthemes "support from health professionals enhancing patient capacity," "support from next of kin in patients' self-care" and "practical support and hope from peers."

Patients' experience with heart failure treatment and self-care-A qualitative study exploring the burden of treatment.

AIMS AND OBJECTIVES: To explore chronic heart failure patients' perceptions of the burden related to treatment and self-care. BACKGROUND: Living with chronic heart failure entails following a demanding treatment regimen, with daily self-care, which could make patients vulnerable to experiencing treatment burden. Burden of treatment is defined as the "work" the healthcare system passes on to the patients with respect to self-care at home, and the impact this has on well-being and quality of life. However, the burden of treatment is an emergent framework, and further research exploring burden among heart failure patients is required. DESIGN: Qualitative study employing semi-structured interviews and content analysis. The study complied with the Consolidated Criteria for Reporting Qualitative Research (COREQ). METHODS: A sample of 17 heart failure patients recruited from an outpatient clinic in Norway. Interview transcripts were coded in Nvivo 11 and analysed using Malterud's systematic text condensation. RESULTS: Two main themes "emotional challenge" and "troublesome self-care" emerged from the analysis. The first theme contained the following subthemes: "a new life situation," "monitoring body signals," "difficult transitions" and "feelings of guilt." The second theme consisted of the subthemes "poor care coordination," "lack of information and education" and "troublesome medication." CONCLUSION: Heart failure treatment constitutes challenges related both to self-care and to emotional burden. The latter not previously clearly articulated in the concept of burden of treatment. Many patients are struggling emotionally, and this affects their self-care ability in addition to affecting their well-being and quality of life. RELEVANCE TO CLINICAL PRACTICE: Nurses are in a strategic position to play a pivotal role in identifying and responding to the emotional burden of treatment in heart failure patients, furthermore to guide and support in discharge planning and in outpatient setting to reduce the patients' emotional distress and fear of failing.

The patient experience with treatment and self-management (PETS) questionnaire: translation and cultural adaption of the Norwegian version.

BACKGROUND: Noncommunicable diseases represents long term medical conditions, which often puts the patients under enormous demands when following treatment, exposing them to experiencing treatment burden. The Patient Experience with Treatment and Self-Management (PETS) questionnaire was developed as a patient-reported measure to identify treatment burden of chronic illness, using modern measurement theory and tested in a variety of settings. Developed in English, this set of measures had not been previously translated into Norwegian. The objective of this study was to develop a Norwegian version of the PETS and to pretest the translated measures through a cognitive debriefing methodology. METHODS: A rigorous translation approach was applied, guided by Functional Assessment of Chronic Illness Therapy methodology. Bilingual teams from Norway and the United States reviewed the translation to develop a provisional version, which was evaluated for test content validity with cognitive interviews by probing 12 native Norwegian patients with noncommunicable diseases. The interviews applied both concurrent and retrospective verbal probing techniques, guided by a question route. Audio-recorded interviews were transcribed verbatim and analysed using systematic text condensation. RESULTS: Assessment of translatability identified the need for cultural adaptation on several core words, balanced with the need to keep close to the original literal meaning. Seven patients with colorectal cancer and five patients with heart failure participated in cognitive testing of the Norwegian version of the PETS. The analytical process of the cognitive interviews identified two emergent main themes, 'comprehension and readability' and 'relevance of the PETS', with seven corresponding subthemes. Most items, response options and instructions were well understood by the patients. Revisions were made concerning cultural relevance. CONCLUSIONS: PETS items were semantically equivalent to the original. The patients with colorectal cancer and heart failure were able to comprehend the PETS and found it to express their experience with treatment burden in chronic illness. Future work will focus on psychometric construct validation and reliability testing of the PETS.

Increased confidence to engage in physical exertion: older ICD recipients' experiences of participating in an exercise training programme.

BACKGROUND: Research suggests that exercise training (ET) programmes may improve both physical and psychosocial functioning in implantable cardioverter defibrillator (ICD) recipients. Most of this research has been conducted by means of quantitative methods. However, knowledge of older ICD recipients' experiences of participating in such programmes is sparse. There is thus a need for more detailed qualitative data from the perspective of older patients. AIM: To describe older ICD recipients' experiences of participating in an ET programme. METHODS: A qualitative design with semistructured interviews involving 12 older ICD recipients who had participated in a 3-month ET programme. Mini-disc recordings of the interviews were transcribed verbatim and analysed using content analysis. RESULTS: The analysis revealed two major themes: (1) 'increased confidence to engage in physical exertion'; and (2) 'increased satisfaction with life'. The first theme is illustrated by three subthemes: 'perceived support from physiotherapists', 'perceiving the heart rate monitor as a motivation to exercise', and 'perceiving peers as motivators for enjoyment and making the effort to exercise'. The second theme was illustrated by the following subthemes: 'perceived psychosocial benefits', 'perceived physical benefits', and 'exercise as a new health habit'. CONCLUSION: The findings indicate that exercising in a cardiac rehabilitation centre together with peers and supervised by skilled healthcare professionals may increase motivation to exert oneself, leading to emotional and physical benefits as well as a more social and active lifestyle for older ICD recipients.

Exercise training and cardiac rehabilitation in patients with implantable cardioverter defibrillators: a review of current literature focusing on safety, effects of exercise training, and the psychological impact of programme participation.

BACKGROUND: Indications for implantable cardioverter defibrillators (ICDs) have been widened considerably during the last decade due to the well-documented effect in the heart failure population. Exercise training (ET) has a 1A recommendation in heart failure. However, data on safety and efficacy of ET in patients with ICDs is sparse. ICD shocks are associated with reduced quality of life and increased mortality. Whether ET may have a beneficial effect in heart failure patients with an ICD is not well documented. METHODS: This review is based on a systematic search in the Pub Med database using the terms 'exercise training', 'implantable cardioverter defibrillator', and 'cardiac rehabilitation'. RESULTS: Nine studies were identified, comprising 1889 patients. The average duration of exercise-based cardiac rehabilitation (CR) was 9.6 weeks. Ten ICD therapies (seven shocks) were reported in the 834 patients with ICD during ET. Between exercise sessions and during follow up 182 events were recorded including 166 shocks. Three studies (2 randomized) showed that the control group representing sedentary patients were more prone to ICD discharge than patients undergoing CR/ET. In all studies the ICD patients improved their aerobic fitness following ET. Few studies report data on the effect of ET on anxiety and depression. CONCLUSION: Based on the current literature, ET in patients with an ICD seems to be safe and is not associated with increased risk of shocks. ET improves aerobic capacity in ICD patients, while effects on anxiety, depression and quality of life are still under debate.

Reconstructing unpredictability: experiences of living with an implantable cardioverter defibrillator over time.

BACKGROUND: The experience of living with an implantable cardioverter defibrillator over time is still poorly understood. Few qualitative studies have investigated this phenomenon. AIMS: To explore implantable cardioverter defibrillator recipients' experiences of living with an implantable cardioverter defibrillator over time. DESIGN: Qualitative. METHODS: Semi-structured interviews were performed with 16 persons living with an implantable cardioverter defibrillator. The constant comparative method of grounded theory was used for data collection and analysis. RESULTS: The core category was defined as 'Reconstructing the unpredictability of living with an ICD' and illustrated by four categories: 'losing control'; 'regaining control'; 'lacking support'; and 'seeking support'. The category 'losing control' encompassed experiences of unpredictability leading to uncertainty as a result of the triggering of the device. Reduced activity to avoid shocks played a major role. In the category 'regaining control', wellbeing increased as time elapsed after the shock and the implantable cardioverter defibrillator recipients reconstructed the unpredictability by adapting to life changes, trusting the implantable cardioverter defibrillator as a life saver and accepting uncertainty. The category labelled 'lacking support' highlighted the implantable cardioverter defibrillator recipients' experiences of lack of appropriate support and advice from health care professionals. The final category 'seeking support' illustrates the implantable cardioverter defibrillator recipients' attempts to obtain guidance and support from family members and health care professionals and the importance of these aspects for the recovery process. CONCLUSION: Living with an implantable cardioverter defibrillator over time was characterised by unpredictability and uncertainty associated with the triggering of the device. Despite coping with uncertainty by means of several strategies, a new onset of arrhythmia could reinforce the feeling of losing control. An important finding was the reduced activity level. RELEVANCE FOR CLINICAL PRACTICE: The results provide knowledge that can aid the design of an intervention programme aimed at reducing patient insecurity and enhancing physical activity. Nurses are in a key position to implement such strategies.