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Chapter 2
Literature Review : self-management in bronchiectasis
BACKGROUND ... 48 METHODS ... 50 Figure 4 ... 51 FINDINGS ... 51 Table 2 Evaluation matrix for papers considered. ... 53 Table 3 A selection of online bronchiectasis patient information resources . 54 DISCUSSION ... 55 CONCLUSION ... 56
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Background
The developments in clinical research, described below give context for the evaluation of the literature extracted and reviewed in this chapter. The advent of easier travel, better communication tools including telephone, video-conferencing, world-wide web, databases for information storage together with global health conferences have provided a fertile environment, rich with information and more easily accessible information-technology that create new challenges for rigorous evaluation (251, 252).
In Bhatt’s 2010 paper describing the evolution of research, Avicenna’s rules for testing drugs 1025 AD in his ‘Canon of Medicine’ sound remarkably similar to inclusion and exclusion criteria used today (253). Bhatt credits the first “controlled
clinical trial of the modern erato Dr Lind (1716-94)” (253). Lind described the need
for systematic review of literature, in discussion relating to published materials on scurvy he noted that “ before the subject could be set in a clear and proper light it was necessary to remove a great deal of rubbish” (254). Characterised by measurement and based on the need for empirical evidence (verified facts) quantitative methods are often described as positivist. In this approach the aim is to collect data objectively from which to derive theories and conclusions that are generalisable to much larger populations. Striving for this objectivity the first double-blind clinical trial was conducted in the UK and is attributed to the British Medical Research Council. The large multi-centre trial was conducted in 1943 to evaluate an extract of patulinum on the common cold (255). The first documented randomised-controlled-trial was conducted by Crofton and published in 1948 investigating Streptomycin resistance in pulmonary tuberculosis (256). Participants were assigned alternately to the intervention or control. These advances in research and evidence for healthcare achieved in the relatively recent past have gained momentum with the availability of evidence on which to base practice growing exponentially. The National Library of Medicine index grew from 1600 to 10 million references between 1865 and 2006 (257). In 2010 the aptly named ‘Seventy-five trials and eleven systematic reviews a day: How will we keep up?’ explores issues of increasing volume of information and the need for quality research (258).The obstacles to and opportunities for interpreting evidence in order to translate and integrate into practice are eloquently described by Kazdin (259).
Page 49 of 288 He vividly depicts the gap between research and practice and the reliance of service funders on evidence to justify expenditure that emphasises the importance of high quality, articulately presented evidence. Health research studies are undertaken based on perceived need, this need exerts pressure to deliver results speedily at odds with the somewhat slow methodical precision required to collect, analyse, synthesise and then publish research findings. Government based guidance, policy and investment based on research and the ability to synthesise information from research benefit from standards and guidelines (260).
The Enhancing the QUAlity and Transparency Of health Research network (EQUATOR) acts as a repository for standards of reporting research and was formally launched in 2008 (77). Appendix 2 synthesises the multiple standards relevant to clinical research in adult health.
This is a literature search rather than a systematic review the principles for evaluating research described in the 2009 PRISMA statement are utilised here as a framework from which to explore the literature in this review (261). The PRISMA statement for systematic reviews although very detailed is congruent with much simpler ones detailed in Garrard’s matrix method in 2013 (262).
The evaluation of research evidence and literature searching are the foundation for evidence-based practice and researcher development (263, 264). The evidence pyramid Fig 1, based on the quantitative paradigm, reflects a positivist need for objective generalisable data (derived using established statistical methods (265- 267)) from which to justify healthcare interventions. Evidence-based medicine is founded on policy and guidance resulting from inferences derived from clinical research (268). In order to evaluate the effect and safety of treatments these are tested through clinical research. However, this is founded on the assumption that multi-disciplinary clinicians are able to understand and interpret evidence from research and from clinical practice guidelines (269). Drolet and Lorenzi (270) describe the ‘translation continuum’ of adoption of scientific discoveries through clinical applications to public health improvement as ‘difficult’. They propose a framework to clarify the translation for the reader called the ‘Biomedical Research Translation Continuum’.
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Methods
Electronic searches were made using the East of England Libraries network
accessible at www.eel.nhs.uk . This is an online resource, permitting healthcare
database advanced searches (HDAS), making accessible online documents to the National Health Service and students. The search strategy consisted of using the search terms self*management and self*care with the Boolean operator AND to combine search lines and limit the searches to bronchiectasis only. Databases searched were the following (their descriptors transcribed from HDAS); Allied and Complementary Medicine 1985 to present – Allied and Complementary Medicine 1985 to present – AMED; British Nursing Index 1992 to present – BNI; Cumulative Index to Nursing and Allied Health Literature 1981 to present - CINAHL; Excerpta Medica Database 1974 to present – EMBASE; Health Business Elite 1922 to present – HBE; Health Management Information Consortium 1979 to present – HMIC; Medline general medical database produced by U.S. National Library of Medicine 1946 to present- MEDLINE; Psychology and related disciplines
international literature 1806 to present - PsycINFO; Medline from PubMed 1946 to present - PUBMED.
Only trials at the top two levels of the evidence pyramid are considered here i.e. meta-analyses, systematic reviews and randomised controlled trials.
These are considered high quality evidence on which generalisable treatments should be based. This literature search considers interventions specifically designed to guide and support self-management. Existing services relating to the care of bronchiectasis such as hospital outpatient services, community matrons, specialist nursing, early discharge services, pulmonary rehabilitation, nutritional, psychological and helpline support represent individual aspects of multidisciplinary care with varying availability throughout the UK. They are not patient-held and patient managed self-management programmes and therefore not part of this literature review.
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Figure 4 Evidence Based Medicine Levels of Evidence
Library, D. M.
EBM Levels of evidence. E. L. o. evidence.
EBM Internal Medicine Portal, Darnall Medical Library.
Findings
The search resulted in sixteen papers, four on Medline and twelve on PubMed. Four were immediately excluded as duplicates. Only adult studies were considered therefore the child study was excluded. Four further studies were excluded because they weren’t bronchiectasis specific. Three more papers representing protocols rather than randomised controlled trials were excluded. Only three papers remain, one high quality Cochrane systematic review of self-management for
bronchiectasis by Kelly et al. (271) evaluating sources up to 13th December 2017
Page 52 of 288 self-management interventions benefit people with bronchiectasis’. Of the two papers evaluated in the Cochrane review by Kelly et al. (271) the Lavery et al. comparison of an expert patient self-management programme with usual care in bronchiectasis (272) is summarised in the evaluation matrix on the next page. The other paper in the Cochrane review by Kelly et al. related to pulmonary rehabilitation and was excluded (individual aspect of multidisciplinary care rather than self-management programme see previous page). This exclusion is further supported by the systematic review of pulmonary rehabilitation for bronchiectasis conducted by Lee et al. who concluded that
‘Short-term improvements in exercise capacity and HRQOL were achieved with supervised PR and ET programs, but sustaining these benefits is challenging in people with bronchiectasis.’ Abstract page 774 (273)
An expert opinion paper by Hester et al. relating to ‘Patient information, education and self-management in bronchiectasis: facilitating improvements to optimise health outcomes’ (63) is highly relevant to self-management in bronchiectasis though low on the evidence pyramid. Published in 2018 this paper was not available when the Bronchiectasis Empowerment Tool and study were designed and conducted. Table 3 is an extract from the Hester et al. paper presenting an evaluation of online bronchiectasis patient information resources, that demonstrates the proliferation of information largely in written format and untested by research (63). It is difficult to evaluate the value of these resources without information relating to their skill development aims, how they are introduced or integrated with health services and without data relating to their acceptability from a user perspective.
Jonkman et al. (197) in their meta-analysis of individual patient-data relating to complex self-management in chronic disease emphasise the importance of the ‘causal mechanism underlying the intervention’ and the evaluation of these interventions. This causal mechanism is even more obscure in grey literature (see Hester et al. table 3 next page) than in the published materials Jonkman analysed.
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Table 2 Evaluation matrix for papers considered.
Paper No Database/s Eval Headings Reference & Critical evaluation 1
Medline and Pubmed
Paper Ref
Kelly C, Grundy S, Lynes D, Evans DJW, Gudur S, Milan SJ, et al. Self-management for bronchiectasis. Cochrane Database of Systematic Reviews. 2018(2).
Design & Participants
High quality Cochrane Systematic review (places this evidence at the pinnacle of the evidence pyramid. Only two randomised controlled trials met the inclusion criteria one of which was a proof of concept. No data aggregation possible. Only 84 UK participants took part.
Aims Assessed the benefits and possible harms of self-management
strategies
Data Collection
Sources: Cochrane Airways Specialised Register of trials, clinical trials registers, reference lists of included studies and reviews. Two review authors independently screened searches to 13th Dec 2017, extracted study characteristics and outcome data and assessed risk of bias for each included study.Random effects model was used for analyses with standard Cochrane methods. articles, and relevant manufacturers’ websites up to 13 December 2017.
Key Findings
No adequately powered studies. Scarce, poor quality evidence. Recommend further research and adherence to current guidelines advocating self-management pending further research findings.
Strengths Clearly identifies a lack of evidence
Limitations Not enough information to assess benefit or harm.
2 Medline and Pubmed
Paper Ref
Lavery KA, O'Neill B, Parker M, Elborn JS, Bradley JM. Expert patient self-management program versus usual care in bronchiectasis: A randomized controlled trial. Archives of Physical Medicine and Rehabilitation. 2011;92(8):1194-201. Design &
Participants Quantitative randomised control trial n=64 at Belfast Hospital.
Aims
To investigate the efficacy of disease specific expert patient programme compared to usual care for people with bronchiectasis.
Data
Collection Questionnaires at baseline, 3 and 6 months.
Key Findings Short term improvement in self efficacy as measured by the
chronic disease self-efficacy scale.
Strengths Used validated programme and validated questionnaires.
Limitations
Not adequately powered, rise in self-efficacy may have been actually during the EPP programme.
Format of the study did not overtly encourage participants to take control of the condition or future care decisions.
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