JMIR Publications

ABSTRACT

Background:

The final 6 months of life is associated with increased healthcare utilisation, including avoidable A&E Department visits or hospital admission, with out-of-hours services often ill-equipped to provide proactive support to patients and their families, putting a strain on the NHS. The acute setting can be a highly pressured and busy environment that may not be best suited to these patients in the final weeks of life. Developing alternative models of care that support patients and their carers at home, provide palliative care tailored to individuals, enhance quality of life, provide more compassionate and cost-effective care while depressurising overburdened health and social care is imperative.

Objective:

To explore the usability, user experiences and impact of a digital dyadic remote monitoring and supportive care system (CARE-PAC) for patients receiving palliative care and end-of-life care, their informal carers and health professionals involved in their care.

Methods:

A mixed method approach was used. Quantitative methods used were quality of life scales, the System Usability Scale and NASSS-Cat (short) questionnaire. Qualitative methods used were short catch-up calls, in-depth interviews and focus groups with topic guides informed by the domains of the NASSS framework. The Wilcoxon (“Pratt”) Signed-rank test statistical test of differences was used to analyse paired quality of life and usability data while the Wilcoxon rank sum test was used to analyse unpaired usability data. Descriptive quantitative analysis of the NASSS-Cat (short) questionnaire was performed. Thematic analysis was used to analyse the qualitative data, with patient/carer and clinician data analysed separately.

Results:

CARE-PAC was used in 5 UK clinical settings. Twenty-six participants (13 patient/care dyads) used CARE-PAC for up to 12 weeks. No significant improvements were noted in patients’ total QoL scores however significant improvements in ‘overall’ QoL and ‘social’ domains, and significant decline in ‘physical’ domains were seen. No differences were noted in carers’ QoL scores or domains. Mean (standard deviation) total usability scores were 87.9 (12.4) for patients and 94.7 (3.8) for carers indicating an excellent user experience. Usability scores for clinicians were below average at 63.6 (15.6) but above 50 (which indicates a poor experience). Clinicians identified the illness/condition, the adopters and the organisations as complexities that could influence the adoption of CARE-PAC. Themes identified from catch-up calls (at least one from all patients and carers), in-depth interviews (2 patients, 2 carers) and 4 focus groups/1 interview (12 clinicians) were: Impact on care experiences; Reflections and Satisfaction; Challenges in project implementation and Future directions.

Conclusions:

CARE-PAC is a usable, effective and reassuring remote monitoring and support digital system for patients nearing the end of life, their carers and healthcare teams that effectively identified patients’ and carers’ needs in real-time and made positive impacts on their well-being. Clinical Trial: None