Qualitative systematic reviews of treatment burden in stroke, heart failure and diabetes: methodological challenges and solutions

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

Research output: Contribution to journalArticle

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.
Original languageEnglish
JournalBMC Medical Research Methodology
Volume13
Issue number10
DOIs
Publication statusPublished - 28 Jan 2013
Externally publishedYes

Fingerprint

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

Keywords

  • qualitative systematic review
  • normalization process theory
  • stroke
  • treatment burden

Cite this

K, Gallacher ; Jani, Bhautesh ; Morrison, Deborah ; Macdonald, Sara ; Blane, David ; Erwin, Patricia ; May, Carl R. ; Montori, Victor M. ; 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 ; Vol. 13, No. 10.
@article{8a28db7c5fc246209e82fe88d22717e8,
title = "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.",
keywords = "qualitative systematic review, normalization process theory, stroke, treatment burden",
author = "Gallacher K and Bhautesh Jani and Deborah Morrison and Sara Macdonald and David Blane and Patricia Erwin and May, {Carl R.} and Montori, {Victor M.} and Eton, {David T.} and Fiona Smith and Batty, {G David} and Mair, {Frances S}",
year = "2013",
month = "1",
day = "28",
doi = "10.1186/1471-2288-13-10",
language = "English",
volume = "13",
journal = "BMC Medical Research Methodology",
issn = "1471-2288",
publisher = "BioMed Central",
number = "10",

}

Qualitative systematic reviews of treatment burden in stroke, heart failure and diabetes : methodological challenges and solutions. / K, Gallacher; Jani, Bhautesh; Morrison, Deborah; Macdonald, Sara; Blane, David; Erwin, Patricia; May, Carl R.; Montori, Victor M.; Eton, David T.; Smith, Fiona; Batty, G David; Mair, Frances S.

In: BMC Medical Research Methodology, Vol. 13, No. 10, 28.01.2013.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Qualitative systematic reviews of treatment burden in stroke, heart failure and diabetes

T2 - methodological challenges and solutions

AU - K, Gallacher

AU - Jani, Bhautesh

AU - Morrison, Deborah

AU - Macdonald, Sara

AU - Blane, David

AU - Erwin, Patricia

AU - May, Carl R.

AU - Montori, Victor M.

AU - Eton, David T.

AU - Smith, Fiona

AU - Batty, G David

AU - Mair, Frances S

PY - 2013/1/28

Y1 - 2013/1/28

N2 - 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.

AB - 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.

KW - qualitative systematic review

KW - normalization process theory

KW - stroke

KW - treatment burden

U2 - 10.1186/1471-2288-13-10

DO - 10.1186/1471-2288-13-10

M3 - Article

VL - 13

JO - BMC Medical Research Methodology

JF - BMC Medical Research Methodology

SN - 1471-2288

IS - 10

ER -