Qualitative systematic reviews of treatment burden in stroke, heart failure and diabetes - Methodological challenges and solutions

Abstract

BackgroundTreatment burden can be defined as the self-care practices that patients with chronic illness must perform to respond to the requirements of their healthcare providers, as well as the impact that these practices have on patient functioning and well being. Increasing levels of treatment burden may lead to suboptimal adherence and negative outcomes. Systematic review of the qualitative literature is a useful method for exploring the patient experience of care, in this case the experience of treatment burden. There is no consensus on methods for qualitative systematic review. This paper describes the methodology used for qualitative systematic reviews of the treatment burdens identified in three different common chronic conditions, using stroke as our exemplar.MethodsQualitative studies in peer reviewed journals seeking to understand the patient experience of stroke management were sought. Limitations of English language and year of publication 2000 onwards were set. An exhaustive search strategy was employed, consisting of a scoping search, database searches (Scopus, CINAHL, Embase, Medline & PsycINFO) and reference, footnote and citation searching. Papers were screened, data extracted, quality appraised and analysed by two individuals, with a third party for disagreements. Data analysis was carried out using a coding framework underpinned by Normalization Process Theory (NPT).ResultsA total of 4364 papers were identified, 54 were included in the review. Of these, 51 (94%) were retrieved from our database search. Methodological issues included: creating an appropriate search strategy; investigating a topic not previously conceptualised; sorting through irrelevant data within papers; the quality appraisal of qualitative research; and the use of NPT as a novel method of data analysis, shown to be a useful method for the purposes of this review.ConclusionThe creation of our search strategy may be of particular interest to other researchers carrying out synthesis of qualitative studies. Importantly, the successful use of NPT to inform a coding frame for data analysis involving qualitative data that describes processes relating to self management highlights the potential of a new method for analyses of qualitative data within systematic reviews.

Development and initial validation of a cessation fatigue scale

“…Cessation fatigue was positively associated with workload factors related to both general life stress and cessation-specific difficulty (i.e., withdrawal severity, difficulty quitting, and treatment burden), and negatively associated with capacity to manage these workload factors (i.e., quitting social support, willpower). While several reviews have described treatment burden among those with a range of chronic medical conditions (Eton et al, 2013; Gallacher et al, 2013a; Gallacher et al, 2013b), examining the psychological impact of that burden (i.e., treatment fatigue), is a growing area of interest. This has been done primarily in the diabetes (Fritschi and Quinn, 2010; Pyatak et al, 2013) and HIV literature (Claborn et al, 2015a, 2015b; Miramontes, 2001).…”

Treatment burden and treatment fatigue as barriers to health

“…Several qualitative studies have been conducted to conceptualize patient concerns [10, 11], and examine how well these are addressed by primary care providers [12]. These studies are complemented by systematic reviews of studies that examined treatment burden both qualitatively [13, 14] and quantitatively [15, 16]. Studies reviewed rarely focused on treatment burden specifically, but a priori definitions of burden were used to identify relevant patient responses.…”

Disability income support design and mental illnesses: a review of Australia and Ontario

“…This finding is significant because most systematic reviews do not include grey literature in their search strategy (e.g. see reviews by Gallacher et al 13 , De Pinho Campos et al 32 and Hunter et al 33 ). Systematic reviews relating to policy making may fail to identify important evidence if they do not extend beyond database searching 34 , because evidence in the social sciences, social policy and case law may not be indexed in searchable electronic databases.…”

“…12 As we extracted data, we documented specific information about the strengths and limitations of each article, using the quality appraisal instrument developed by Gallacher et al 13 as a guide, because of its flexibility in appraising documents that do not follow a typical study design.…”