Exploring telemonitoring and self-management by patients with chronic obstructive pulmonary disease: A qualitative study embedded in a randomized controlled trial
Introduction
Chronic obstructive pulmonary disease (COPD) is a leading cause of morbidity and mortality [1]. As patient numbers increase and the cost of healthcare provision rises, concern is growing over the sustainability of current, clinician-centered models of care [2]. In line with international developments [3], UK National Health Service (NHS) policy emphasizes patient self-management as a means of redistributing both the responsibility and cost of healthcare provision for people living with long-term conditions [4], [5], [6], [7].
The term self-management in a healthcare context is often used to describe processes relating to the acquisition and/or use of knowledge and skills by patients to support their own care. It is also sometimes used as an umbrella descriptor for formalized activities (such as educational programs, person-centered coaching, etc.) designed by healthcare professionals with the intention of preparing patients to assume (greater) responsibility for managing their condition. Whilst philosophically rooted in self-efficacy theory [8], it has been widely interpreted by practitioners as a means of supporting medical compliance with established practice [9], [10]. The term is also linked to the patient empowerment agenda in healthcare policy and practice [11], [12] which emphasizes the role of the consumer as a partner in, rather than mere recipient of, healthcare. There is however uncertainty among patients and healthcare professionals as to what self-management means in practice: its terminology, applicability and implications [7], [13].
Telemonitoring of patients at home is promoted as a cost-effective approach to facilitating patient self-management. It allows clinicians to monitor patients’ clinical status remotely, respond with advice on management and thus has the potential to improve care (Fig. 1) [14].
However, it is not clear what impact this has on patients’ desire and ability to self-manage. In our pilot study of telemonitoring in COPD [15], professionals perceived a tension between the opportunities for the service to enhance patients’ independence through supporting self-management, and its potential to increase the burden of professional work through enabling more direct routes to access and generating new responsibilities for clinicians to respond to telemonitoring readings.
Self-management and telemonitoring approaches in COPD have generally been investigated as separate propositions, though promoted as synergistic. Studies investigating self-management approaches in COPD have largely focused on the development and provision of formalized patient education programs, though heterogeneity in the design, delivery and evaluation of such initiatives has resulted in inconsistent outcomes [16], [17], [18].
Research on the effectiveness of telemonitoring in COPD has focused primarily on the impact of interventions on hospital admissions and cost-effectiveness, although has also reported on quality of life and patient satisfaction measures [19], [20]. Systematic reviews suggest overall benefit in these outcomes [19], [20], though it is increasingly recognized that contextual factors affect the implementation and impact of telemonitoring interventions [21]. Whereas a number of studies have indicated that telemonitoring can improve patients’ disease knowledge and involvement in their health management [22], [23], [24], others have reported that telemonitoring has not led to improvements in autonomy [25], [26].
Recent attention has focused on the philosophical positioning of self-management within telemonitoring services. Schermer argues that there are three degrees of telemonitoring-supported self-management [27] two of which he describes as ‘compliant self-management’ and a third as ‘concordant self-management’ (see Table 1). He argues that current forms of telemonitoring merely promote ‘compliant self-management’. However, the views of patients and healthcare professionals on issues of compliance and concordance in relation to telemonitoring-supported self-management have yet to be investigated. This study addresses these issues in the context of a large qualitative dataset gathered during the TELESCOT randomized controlled trial of telemonitoring in COPD (described in Fig. 1) [28]. TELESCOT is a program of academic research investigating the clinical and cost-effectiveness of telemonitoring interventions in the management of people living with a range of long-term conditions within Lothian, Scotland (http://www.telescot.org). Embedded within the trials, the qualitative studies are designed to provide insight into participants’ perceptions of the telemonitoring intervention, facilitators and barriers to implementation and the process by which any effect is exerted. This is an approach that has the potential to be particularly useful in relation to the evaluation of complex interventions [29].
We sought to explore the views of patients and healthcare professionals who were using telemonitoring as part of the TELESCOT COPD trial of the impact of telemonitoring on self-management in COPD.
Section snippets
Methods
The protocol for this study has been published elsewhere [28], [30]. The methodology is summarized here with additional details of how the data were analyzed to address the aim of this study.
Results
A total of 38 (67% of the 49 patients invited) patients (47% male, mean age 67.5 years) and 32 healthcare professionals provided 70 interviews. Partners/family members of patients were present and contributed to eight of the interviews. (See Table 3.) The average interview duration was 30 min.
Our findings are presented in two sections. Section 3.1 presents two central themes from patients’ perspective: ‘knowledge and empowerment’ and ‘accessibility and reassurance’. Section 3.2 describes two
Summary of main findings
Patients credited telemonitoring with improving their understanding of COPD (particularly in comparison to usual care) and in justifying their decisions to adjust treatment or seek professional advice. Professionals discussed telemonitoring in terms of supporting attitudes and self-management behaviors related to medical compliance. They encouraged patients to exercise personal responsibility within these parameters.
Strengths and limitations of the study
This research was nested within a randomized controlled trial investigating a
Funding
Chief Scientist Office, Scottish Government Health Directorates, UK. NHS Lothian provided the telemonitoring equipment and the clinical services.
HP is supported by a Primary Care Research Career Award from the Chief Scientist Office of the Scottish Government. BM and JH are supported by NHS Lothian through the Edinburgh Health Services Research Unit.
Conflict of interest
The authors have stated that there are none.
Acknowledgements
We wish to acknowledge the kindness, support and cooperation of the patients and healthcare professionals who participated in this study, the Scottish Primary Care Research Network and the Edinburgh Wellcome Trust Clinical Research Facility nurses. We are grateful to Professor Sir Lewis Richie (chair), University of Aberdeen, Professor Chris Griffiths, Queen Mary University of London, Professor Anne Louise Kinmonth, University of Cambridge and Graeme Campbell, Chief Scientist Office, Scottish
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On behalf of the TELESCOT Programme Team.