Feasibility of a Technology-Enabled Program for Patients with Chronic Illness and Their Informal Caregivers

Background: Chronic illness affects 60% of adults in the U.S. Much of the management of chronic illness occurs outside of the healthcare system. Patients must take medications as prescribed, follow physicians’ recommendations for diet and exercise, and more. Often, patients are supported in disease-management by informal caregivers, such as their spouse or children. Fifty-three million Americans are informal caregivers and caregiving is associated with increased levels of stress, financial strain, and career difficulties (e.g. having to retire early). Previous interventions have aimed to support patients or their informal caregivers alone. Dyadic interventions that aim to support both patients and their caregivers are an emerging area of research. Web-based interventions are another growing field, and confer the advantages of remote and asynchronous access as well as scalability.

Objective: This study aims to test the feasibility and acceptability of a web-based intervention to improve self-management and dyadic coping of patients with chronic illness and their informal caregivers.

Design: Single-arm pilot study.

Methods: Veterans and their informal caregivers were recruited from Primary Care, Women’s Health, and Nephrology clinics at the VA Palo Health Care System. Recruitment was conducted in two waves: March-May 2019, and October-December 2019. Participants were eligible if they had a chronic illness, had an informal caregiver, and had access to a computer, or were a caregiver of a patient who met these criteria. Interested patients and informal caregivers were further screened for self-management distress. Consented participants completed pre-intervention and post-intervention surveys assessing physical and mental health, dyadic coping, and communication. In between, they participated in WebSUCCEED (Web-based Self-care Using Collaborative Coping EnhancEment in Diseases). WebSUCCEED is based on the Dyadic Health Behavior Change Model and consists of three skills-training modules: 1) Skills to Manage Stress and Improve Positive Emotions, 2) Skills to Reduce Relationship Stress and Improve Interpersonal Relationships, and 3) Skills to Build a Fulfilling Life and Maintaining Behavior Change. The website content was developed from previous theory-based chronic illness management and caregiver assistance programs - the Stanford Chronic Disease Self-Management Program (CDSMP), the Couples Coping Enhancement Training (CCET) Program, and the VA National Caregiver Training Program. Statistical analyses of study measures were performed in Microsoft Excel ® and included descriptive analyses and paired t-tests.

Results: Of the 53 individuals who screened positive and expressed interest in the study, 16 patients and 16 caregivers completed baseline surveys (60% recruitment rate), and 6 patients and 5 caregivers have completed the study (34%). Only 3 have withdrawn, for a current retention rate of 91%. 7 patients and 8 caregivers are in various stages of completing the website intervention. Participants have shared positive feedback of the program and appreciate the focus on the caregivers. Initial paired t-tests of the psychosocial pre and post surveys were not significant at the p < 0.05 level.

Conclusions: This study is still in progress. Initial results indicate that the web-based intervention is both feasible and acceptable, as participants are enrolling in and completing the study. Adequately powered randomized trials are needed to understand the self-management effect of the website on dyads coping with chronic illness.