A scoping review of instruments for remote monitoring of symptoms, wishes, and needs, and the challenges of implementation in palliative care for people with heart failure
J C B De Leeuw, Y M J Goertz, M K Wallin, T Jaarsma, M Friedrichsen, P Jaarsma, A Stromberg, D Kurpas, D Stefanicka-Wojtas, G J Geersing, E De Graaf, H P Brunner-La Rocca, D J A JanssenAbstract
Background
Remote monitoring has the potential to support timely identification of changing symptoms, wishes and needs of people with heart failure receiving palliative care. Effective remote monitoring may enhance continuity of care and promote person-centred care. However, existing instruments for remote monitoring are often focused predominantly on physiological symptoms, whereas an overview of instruments that address the broader spectrum of symptoms, wishes and needs in palliative care for people with heart failure is lacking. Moreover, implementation challenges of such instruments remain poorly understood.
Purpose
To map and analyse existing instruments used to remotely monitor symptoms, wishes and needs in palliative care for people with heart failure and to evaluate their implementation.
Methods
This scoping review, conducted as part of the HORIZON Europe-funded RAPHAEL project, followed the framework developed by Arksey and O’Malley. A systematic search was executed using seven databases (PubMed, Cinahl, Embase, Scopus, PsycINFO, Web of Science, and Medline) on December 11, 2024. Eligible publications included studies on remote monitoring of symptoms, wishes or needs of patients with heart failure in palliative care.
Results
Of the 3820 identified studies, 23 met the inclusion criteria, of which 20 were conducted in Western countries. None of the included studies described a monitoring instrument that simultaneously evaluated symptoms, wishes and needs. Most instruments (n = 22) focused primarily on monitoring physical symptoms and were not specifically designed for palliative care (Figure). Only one instrument monitored wishes and needs such as health values and needs but did not assess symptoms. Details on implementation were often insufficient.
Conclusions
Currently no instruments are available that monitor both self-reported symptoms and identify the wishes and needs of patients with heart failure who receive palliative care. The RAPHAEL project aims to address this gap by developing an instrument for this purpose whilst assessing its implementation into practice.Monitored symptomsFor image description, please refer to the figure legend and surrounding text.