- Email: [email protected]
Is a qualitative perspective missing from COPD guidelines?
Spotlight
Forum Is a qualitative perspective missing from COPD guidelines?
www.thelancet.com/respiratory Vol 1 August 2013
interdisciplinary) technical team. The GDG meets to discuss, refine, and approve these questions, but not to propose alternatives. Thus, the range of questions posed (in NICE and GOLD) are perhaps limited from the outset. As external observers, we speculate that too strict an interpretation of the hierarchy of evidence could be restricting the range of possible questions being asked and answered in the guidelines. We suggest four areas of inquiry which if included would access a wider range of literature and satisfy the questions of more health professionals and patients. First, cultural factors. NICE’s technical team proposed the question “do cultural factors modify the uptake of care?” in the 2010 guideline. However the question was removed within the final guideline because it was considered out of scope. Cultural factors are perhaps viewed as of interest only insofar as they relate to doctors accessing patients for clinical review. From our perspective, a more important question (and one that should be asked) is: how do cultural factors shape the experience of COPD or its symptoms? Research in Uruguay (by MW) found that shared health beliefs about the adverse effects on breathing of atmospheric humidity shaped how people interpreted changes in breathing and led to certain social practices to avoid these effects (sometimes conflicting with health professionals’ indications—eg, non-attendance at appointments on humid days). Second, service delivery is not regarded as a guideline issue. However, positive outcomes for the patient are determined not only by what health professionals deliver (ie, the best drugs), but how they deliver it and how the patient perceives the health professionals, interprets the information, compares it with their own knowledge (and that of trusted others), and is involved in their treatment decisions. Qualitative literature might be well suited to address these complexities. For example, oxygen use can be subtly shaped by family members and patients’ ideas that use of home-oxygen for fewer hours is a sign of recovery.
For the GOLD Global Strategy see http://www.goldcopd.org/ uploads/users/files/GOLD_ Report_2013_Feb20.pdf For the NICE guidance see http://guidance.nice.org.uk/ CG101/Guidance/pdf/English For the Cumulative Index to Nursing and Allied Health Literature database see http://www.ebscohost.com/ academic/cinahl-plus-with-fulltext/ For Megan Wainwright’s research in Uruguay see http:// etheses.dur.ac.uk/7270/DDD5. html
Jim Varney/Science Photo Library
As researchers in a Centre for Medical Humanities, we are interested in what our specialty and the social sciences can contribute to the understanding and treatment of disease. How, by widening our cultural and historical understandings of diseases such as chronic obstructive pulmonary disease (COPD), can we better interpret the evidence of a distinction between measured and experienced symptoms? To fully understand current definitions, treatments, and management strategies, we aimed to compare present and past national and international clinical guidelines for COPD. We focus on development of the GOLD and NICE full guidelines (both extensive reports of COPD were updated in the past 3 years). When GOLD released its first guidelines in 2001, it described its audience as pulmonary specialists and other interested physicians, but revised this target in 2009 to include general practitioners and patients. NICE’s audience includes all health-care professionals, patients, and carers. Therefore, since the guidelines are intended for all, we wondered who is invited to participate in their production? Although GOLD states that their guideline team is made up of individuals with expertise in COPD research and patient care, no members of the board of directors or science committee are nurses, physiotherapists, or other allied health professionals—people whom few would disagree hold a wealth of expertise in COPD research and patient care. Non-clinician social scientists are also not included. NICE’s guideline development group (GDG) is far more multidisciplinary, including members from nursing, nutrition, physiotherapy, and patient and carer groups. With this committee composition in place, we found it unsurprising that the GOLD guideline limited their evidence search to PubMed and clinical trials. It is unlikely that a committee made up only of physicians would have the expertise needed to assess qualitative research. GOLD does, however, have a health economist involved in the review process, as does NICE. However, we noted only a few qualitative studies in both the GOLD and NICE bibliographies, but we are aware from our work that there were at least 50 such qualitative research articles published in the past 15 years on the experience of COPD. Both GOLD and NICE equally exclude the cumulative index to nursing and allied health literature as an evidence database. The NICE guideline is, in theory, inclusive of different kinds of evidence and explicitly states in its review protocol that searches should not necessarily be restricted to randomised controlled trials. NICE literature searches are driven by a series of clinical questions that cover the guideline scope. Notably, however, the GDG does not draft these questions, but rather they are formulated by a (less
441
Spotlight
Further reading Williams V, Bruton A, Ellis-Hill C, McPherson K. The importance of movement for people living with chronic obstructive pulmonary disease. Qual Health Res 2011; 21: 1239–48 Symmonds Roberts M. Breath. London: Vintage Books, 2009 Ek K, Sahlberg-Blom E, Andershed B, Ternestedt BM. Struggling to retain living space: patients’ stories about living with advanced chronic obstructive pulmonary disease. J Adv Nurs 2011; 67: 1480–90 Lohne V, Heer HC, Andersen M, Miaskowski C, Kongerud J, Rustoen T. Qualitative study of pain of patients with chronic obstructive pulmonary disease. Heart Lung 2010; 39: 226–34
Understanding individuals and family members’ subjective experiences is key to improve and monitor whether treatments are used in the same way as in clinical trials. Third, what counts as a significant symptom for clinicians and patients may differ. Although spirometry is necessary to confirm a diagnosis, NICE states that it is important not to over-rely on spirometry and equally emphasises the clinical features of the disease. The GOLD guideline’s combined assessment of the disease includes lung function data, exacerbation history, and symptoms as assessed with physical-function orientated tools such as the Medical Research Council Dyspnoea and COPD assessment tests. A far more complex perspective on how symptoms are described and interpreted by patients can be found in the cultural literary record on breathlessness and in qualitative research. Fourth, patient voice. Implicit in NICE’s guidelines (but not in GOLD) is the importance of inclusion of patients and family members as stakeholders in the production of guidelines. However, these “experts by experience” did
not help define the questions asked. Hundreds of patients and carers voices presented verbatim in the qualitative literature—including descriptions of symptoms, impact of illness, experience of care, and interpretations of medical information—are silenced because the literature is either missed or ignored. The guidelines fulfil a very important role in providing internationally and nationally consistent standards of care for people with COPD. However, we suggest more can be done. The assumptions that underlie the inclusion and exclusion of evidence and expertise continue to be insufficiently questioned in the social spaces of guideline production (eg, committees) which in turn shapes their content.
*Megan Wainwright, Jane Macnaughton Centre for Medical Humanities, Durham University, Durham, UK [email protected] We declare that we have no conflicts of interest.
NICE and GOLD response We would like to thank Megan Wainright (MW) and Jane Macnaughton (JM) for their interest in the GOLD and NICE documents on COPD and for their constructive criticism. In an ideal world the documents would not have all of the shortcomings listed but a few comments are needed in response to some of the issues brought forward. The GOLD document is not a guideline but a strategy document. Its global format makes it difficult to fit in some of the requested expertise, including the expert patient. The document is on purpose kept brief and as simple as possible to only include the core principles for diagnosing and treating COPD. In fact, simplicity is requested from most of GOLD’s stakeholders. We admit that some things are perhaps dealt with too superficially but fear that more detail would provide a barrier to the document actually being read and used in clinical practice. It is the hope of GOLD that the strategy put forward in the document will inspire regional and national guidelines to develop their own specific documents. We believe that most of the input that MW and JM are missing would be better placed in national guidelines where not least service delivery is key. GOLD has a quite limited budget and expansion of committees and meeting structure is not feasible. We do, however, recognise that GOLD can still improve to have a broader scope and an expanded search strategy, and we will discuss these issues at our meetings in the Board of Directors as well as the Scientific Committee later in 2013. For GOLD, but particularly for NICE, questions to be addressed need to be limited in number in view of resource availability and practicalities. Also, use of GRADE methodology is based around assessing evidence in the form of 442
systematic reviews and thus questions need to be specifically worded. This also makes it difficult to include quite as many other sources of knowledge that MW and JM suggest. We agree that patient involvement is important—it is easier to incorporate in national guidelines but more problematical in global documents due to equality of representation and language issues. However, experience from the European Respiratory Society can be used. Here, it is usual that once a guideline or document is accepted for development, the European Lung Foundation organises representation with focus groups specifically designed for patients. This may be preferable to patients taking part in the long committee meetings as these may be laborious for disabled patients and patients might also be overwhelmed by the technical information that is presented. Nevertheless, the quest for simplicity is probably the most important reason for having documents that different interest groups will often find lacking in their particular area of expertise. This seems an inevitable problem in the development of these documents that hopefully will still be useful to most readers in guiding clinical practice.
Jørgen Vestbo, Jadwiga Wedzicha University of Manchester, Manchester, UK (JV) and University College London, London, UK (JW) [email protected]; [email protected] JV is Chair of the GOLD Science Committee and as such was responsible for the GOLD 2011 revision and 2013 update. JV has received honoraria from the pharmaceutical industry for providing advice and presentations. JW was a Member of the NICE Guideline Development Committee for the COPD Update in 2010.
www.thelancet.com/respiratory Vol 1 August 2013
Forum Is a qualitative perspective missing from COPD guidelines?
www.thelancet.com/respiratory Vol 1 August 2013
interdisciplinary) technical team. The GDG meets to discuss, refine, and approve these questions, but not to propose alternatives. Thus, the range of questions posed (in NICE and GOLD) are perhaps limited from the outset. As external observers, we speculate that too strict an interpretation of the hierarchy of evidence could be restricting the range of possible questions being asked and answered in the guidelines. We suggest four areas of inquiry which if included would access a wider range of literature and satisfy the questions of more health professionals and patients. First, cultural factors. NICE’s technical team proposed the question “do cultural factors modify the uptake of care?” in the 2010 guideline. However the question was removed within the final guideline because it was considered out of scope. Cultural factors are perhaps viewed as of interest only insofar as they relate to doctors accessing patients for clinical review. From our perspective, a more important question (and one that should be asked) is: how do cultural factors shape the experience of COPD or its symptoms? Research in Uruguay (by MW) found that shared health beliefs about the adverse effects on breathing of atmospheric humidity shaped how people interpreted changes in breathing and led to certain social practices to avoid these effects (sometimes conflicting with health professionals’ indications—eg, non-attendance at appointments on humid days). Second, service delivery is not regarded as a guideline issue. However, positive outcomes for the patient are determined not only by what health professionals deliver (ie, the best drugs), but how they deliver it and how the patient perceives the health professionals, interprets the information, compares it with their own knowledge (and that of trusted others), and is involved in their treatment decisions. Qualitative literature might be well suited to address these complexities. For example, oxygen use can be subtly shaped by family members and patients’ ideas that use of home-oxygen for fewer hours is a sign of recovery.
For the GOLD Global Strategy see http://www.goldcopd.org/ uploads/users/files/GOLD_ Report_2013_Feb20.pdf For the NICE guidance see http://guidance.nice.org.uk/ CG101/Guidance/pdf/English For the Cumulative Index to Nursing and Allied Health Literature database see http://www.ebscohost.com/ academic/cinahl-plus-with-fulltext/ For Megan Wainwright’s research in Uruguay see http:// etheses.dur.ac.uk/7270/DDD5. html
Jim Varney/Science Photo Library
As researchers in a Centre for Medical Humanities, we are interested in what our specialty and the social sciences can contribute to the understanding and treatment of disease. How, by widening our cultural and historical understandings of diseases such as chronic obstructive pulmonary disease (COPD), can we better interpret the evidence of a distinction between measured and experienced symptoms? To fully understand current definitions, treatments, and management strategies, we aimed to compare present and past national and international clinical guidelines for COPD. We focus on development of the GOLD and NICE full guidelines (both extensive reports of COPD were updated in the past 3 years). When GOLD released its first guidelines in 2001, it described its audience as pulmonary specialists and other interested physicians, but revised this target in 2009 to include general practitioners and patients. NICE’s audience includes all health-care professionals, patients, and carers. Therefore, since the guidelines are intended for all, we wondered who is invited to participate in their production? Although GOLD states that their guideline team is made up of individuals with expertise in COPD research and patient care, no members of the board of directors or science committee are nurses, physiotherapists, or other allied health professionals—people whom few would disagree hold a wealth of expertise in COPD research and patient care. Non-clinician social scientists are also not included. NICE’s guideline development group (GDG) is far more multidisciplinary, including members from nursing, nutrition, physiotherapy, and patient and carer groups. With this committee composition in place, we found it unsurprising that the GOLD guideline limited their evidence search to PubMed and clinical trials. It is unlikely that a committee made up only of physicians would have the expertise needed to assess qualitative research. GOLD does, however, have a health economist involved in the review process, as does NICE. However, we noted only a few qualitative studies in both the GOLD and NICE bibliographies, but we are aware from our work that there were at least 50 such qualitative research articles published in the past 15 years on the experience of COPD. Both GOLD and NICE equally exclude the cumulative index to nursing and allied health literature as an evidence database. The NICE guideline is, in theory, inclusive of different kinds of evidence and explicitly states in its review protocol that searches should not necessarily be restricted to randomised controlled trials. NICE literature searches are driven by a series of clinical questions that cover the guideline scope. Notably, however, the GDG does not draft these questions, but rather they are formulated by a (less
441
Spotlight
Further reading Williams V, Bruton A, Ellis-Hill C, McPherson K. The importance of movement for people living with chronic obstructive pulmonary disease. Qual Health Res 2011; 21: 1239–48 Symmonds Roberts M. Breath. London: Vintage Books, 2009 Ek K, Sahlberg-Blom E, Andershed B, Ternestedt BM. Struggling to retain living space: patients’ stories about living with advanced chronic obstructive pulmonary disease. J Adv Nurs 2011; 67: 1480–90 Lohne V, Heer HC, Andersen M, Miaskowski C, Kongerud J, Rustoen T. Qualitative study of pain of patients with chronic obstructive pulmonary disease. Heart Lung 2010; 39: 226–34
Understanding individuals and family members’ subjective experiences is key to improve and monitor whether treatments are used in the same way as in clinical trials. Third, what counts as a significant symptom for clinicians and patients may differ. Although spirometry is necessary to confirm a diagnosis, NICE states that it is important not to over-rely on spirometry and equally emphasises the clinical features of the disease. The GOLD guideline’s combined assessment of the disease includes lung function data, exacerbation history, and symptoms as assessed with physical-function orientated tools such as the Medical Research Council Dyspnoea and COPD assessment tests. A far more complex perspective on how symptoms are described and interpreted by patients can be found in the cultural literary record on breathlessness and in qualitative research. Fourth, patient voice. Implicit in NICE’s guidelines (but not in GOLD) is the importance of inclusion of patients and family members as stakeholders in the production of guidelines. However, these “experts by experience” did
not help define the questions asked. Hundreds of patients and carers voices presented verbatim in the qualitative literature—including descriptions of symptoms, impact of illness, experience of care, and interpretations of medical information—are silenced because the literature is either missed or ignored. The guidelines fulfil a very important role in providing internationally and nationally consistent standards of care for people with COPD. However, we suggest more can be done. The assumptions that underlie the inclusion and exclusion of evidence and expertise continue to be insufficiently questioned in the social spaces of guideline production (eg, committees) which in turn shapes their content.
*Megan Wainwright, Jane Macnaughton Centre for Medical Humanities, Durham University, Durham, UK [email protected] We declare that we have no conflicts of interest.
NICE and GOLD response We would like to thank Megan Wainright (MW) and Jane Macnaughton (JM) for their interest in the GOLD and NICE documents on COPD and for their constructive criticism. In an ideal world the documents would not have all of the shortcomings listed but a few comments are needed in response to some of the issues brought forward. The GOLD document is not a guideline but a strategy document. Its global format makes it difficult to fit in some of the requested expertise, including the expert patient. The document is on purpose kept brief and as simple as possible to only include the core principles for diagnosing and treating COPD. In fact, simplicity is requested from most of GOLD’s stakeholders. We admit that some things are perhaps dealt with too superficially but fear that more detail would provide a barrier to the document actually being read and used in clinical practice. It is the hope of GOLD that the strategy put forward in the document will inspire regional and national guidelines to develop their own specific documents. We believe that most of the input that MW and JM are missing would be better placed in national guidelines where not least service delivery is key. GOLD has a quite limited budget and expansion of committees and meeting structure is not feasible. We do, however, recognise that GOLD can still improve to have a broader scope and an expanded search strategy, and we will discuss these issues at our meetings in the Board of Directors as well as the Scientific Committee later in 2013. For GOLD, but particularly for NICE, questions to be addressed need to be limited in number in view of resource availability and practicalities. Also, use of GRADE methodology is based around assessing evidence in the form of 442
systematic reviews and thus questions need to be specifically worded. This also makes it difficult to include quite as many other sources of knowledge that MW and JM suggest. We agree that patient involvement is important—it is easier to incorporate in national guidelines but more problematical in global documents due to equality of representation and language issues. However, experience from the European Respiratory Society can be used. Here, it is usual that once a guideline or document is accepted for development, the European Lung Foundation organises representation with focus groups specifically designed for patients. This may be preferable to patients taking part in the long committee meetings as these may be laborious for disabled patients and patients might also be overwhelmed by the technical information that is presented. Nevertheless, the quest for simplicity is probably the most important reason for having documents that different interest groups will often find lacking in their particular area of expertise. This seems an inevitable problem in the development of these documents that hopefully will still be useful to most readers in guiding clinical practice.
Jørgen Vestbo, Jadwiga Wedzicha University of Manchester, Manchester, UK (JV) and University College London, London, UK (JW) [email protected]; [email protected] JV is Chair of the GOLD Science Committee and as such was responsible for the GOLD 2011 revision and 2013 update. JV has received honoraria from the pharmaceutical industry for providing advice and presentations. JW was a Member of the NICE Guideline Development Committee for the COPD Update in 2010.
www.thelancet.com/respiratory Vol 1 August 2013