Qualitative Systematic Reviews of Treatment Burden in Stroke, Heart Failure and Diabetes - Methodological Challenges and Solutions

Katie Gallacher, Bhautesh Jani, Deborah Morrison, Sara Macdonald, David Blane, Patricia Erwin, Carl R. May, Victor Manuel Montori, David T Eton, Fiona Smith, G. David Batty, Frances S. Mair

Research output: Contribution to journalArticle

37 Citations (Scopus)

Abstract

Background: Treatment 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. Methods: Qualitative 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). Results: A 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. Conclusion: The 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.

Original languageEnglish (US)
Pages (from-to)10
Number of pages1
JournalBMC Medical Research Methodology
DOIs
StateAccepted/In press - Jan 28 2013

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Heart Failure
Stroke
Self Care
Therapeutics
Databases
Qualitative Research
Health Personnel
Publications
Consensus
Patient Care
Chronic Disease
Language
Research Personnel

ASJC Scopus subject areas

  • Epidemiology
  • Health Informatics

Cite this

Qualitative Systematic Reviews of Treatment Burden in Stroke, Heart Failure and Diabetes - Methodological Challenges and Solutions. / Gallacher, Katie; Jani, Bhautesh; Morrison, Deborah; Macdonald, Sara; Blane, David; Erwin, Patricia; May, Carl R.; Montori, Victor Manuel; Eton, David T; Smith, Fiona; Batty, G. David; Mair, Frances S.

In: BMC Medical Research Methodology, 28.01.2013, p. 10.

Research output: Contribution to journalArticle

Gallacher, Katie ; Jani, Bhautesh ; Morrison, Deborah ; Macdonald, Sara ; Blane, David ; Erwin, Patricia ; May, Carl R. ; Montori, Victor Manuel ; Eton, David T ; Smith, Fiona ; Batty, G. David ; Mair, Frances S. / Qualitative Systematic Reviews of Treatment Burden in Stroke, Heart Failure and Diabetes - Methodological Challenges and Solutions. In: BMC Medical Research Methodology. 2013 ; pp. 10.
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abstract = "Background: Treatment 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. Methods: Qualitative 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). Results: A 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. Conclusion: The 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.",
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AU - Erwin, Patricia

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