Qualitative research in complex regional pain syndrome (CRPS)
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Stephen Butler
There are two points for discussion concerning the article entitled “Building the evidence for CRPS research from a lived experience” in this issue of the Scandinavian Journal of Pain [1]. The first is: why do qualitative research? The second is: would qualitative research in complex regional pain syndrome (CRPS) really help patients and practitioners?
1 Why do qualitative research in patients with pain
To answer the first question, qualitative research (QualR) in medicine has a long track record although somewhat shorter in the area of pain. A search in PubMed using the search words “qualitative” “research” “pain” gives 3479 hits. A quick review of the first 40 articles shows that over half actually are on clinical pain syndromes and the process goes back several years. The structure and practice of QualR are both well established and comprehensive texts on this have been published as the authors point out [2].
Although often considered “not scientific” by those doing quantitative research, many in quantitative research in pain use methods derived from QualR. As the authors of this paper also point out, Ronald Melzack began developing the McGill pain questionnaire (MPQ) by talking to a patient with phantom limb pain on several occasions, fascinated by her descriptions of the pain [3]. The description by Melzack of the process makes interesting reading. His background as a part time author of lay literature perhaps was behind this interest in words but Melzack used a quasi-QualR technique and the MPQ that resulted now is routinely used in clinical pain research.
2 Patient reported outcome questionnaires (PRO)
The McGill Pain Questionnaire (MPQ) is one of a series of commonly used patient reported outcome (PRO) questionnaires and PROs as assessment tools are now required by both the FDA and EMA in Phase I-III pharmacological studies in pain therapy before official approval is given to market them. The PROs rely on subjects’ report of their experience when taking the drugs and are semi- qualitative. In addition, some agencies require a “cognitive debriefing” of subjects involved in clinical trials which is a structured interview of a small cohort of those included in the studies, a QualR process. My opinion is that QualR has been useful in the past and can continue to contribute to our knowledge of pain patients.
3 Would qualitative research in CRPS really help patients and practitioners?
To answer the second question, could QualR help in studies on CRPS, the actual purpose proposed by the authors is some what vague. A recent QualR study in CRPS by Grieve et al. [4] indicates a lack of available patient education information in the United Kingdom and recommends establishing a support system with information for patients and this problem is alluded to by the paper reviewed here [1]. As they also state, more information on the “lived experience” of those with CRPS could relieve patient anxiety and make the healthcare system somewhat more sympathetic if it could be available universally. The crux of this problem is as the present authors point out - the diagnosis of CRPS is not generally recognized by the healthcare system and therefore patients and providers would not be aware of such information. This situation is similar to the problems surrounding other poorly understood chronic pain syndromes such as fibromyalgia and whiplash associated disorders. Many of the issues Johnston et al. [1] present in the discussion section are simply generic to chronic pain. Grieve et al. [5] point out in another article that the outcome measures now used to evaluate CRPS are varied and it is difficult to synthesize the current literature.
It is also possible that the symptom focus for present treatment is not what patients’ consider the most important and a QualR study might find another focus for treatment that could be more meaningful for the patient. It could also help to unify outcome measures used in CRPS research so that more studies evaluate the same variables. This would be a real breakthrough since the focus on pain has not led to very effective treatments for the majority of patients.
The authors have formulated an outline for structured interviews of patients with CRPS [1]. This adds more detail than the study by Grieve et al. cited above [4]. I would also suggest adding further questions such as “What treatments have you had for your problems?”, “Can you describe the symptoms you have that are the most bothersome?”, and “How have treatment side effects affected your life?”.
4 Patient oriented rather than symptom oriented approach to treatment of CRPS
I commend the authors for approaching the syndrome of CRPS from another viewpoint that is patient oriented rather than symptom oriented. The healthcare system focuses too much on finding a diagnosis and treating that diagnosis, not the patient. Patients and their needs are forgotten when treatment is only for a diagnosis which may or may not be correct. QualR is a way to refocus the healthcare system more appropriately and put the patient in the spotlight for more compassionate encounters where treatment is difficult and patients suffer without adequate support.
The next step is for Johnston et al. [1] to test their QualR formula and present us with concrete suggestions derived from the study to improve research and patient care for CRPS.
DOI of refers to article: http://dx.doi.org/10.1016/j.sjpain.2015.06.003.
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Conflict of interest: The author has no conflict of interest.
References
[1] Johnston C, Grey MA, Oprescu FI. Building the evidence for CRPS research from a lived experience perspective. Scan J Pain 2015;9:30-7.Search in Google Scholar
[2] Given LM, editor. The SAGE encyclopedia of qualitative research methods. Thou-sand Oaks, CA: SAGE Publications, Inc.; 2008.Search in Google Scholar
[3] Melzack R. The McGill pain questionnaire from description to measurement. Anesthesiology 2005;103:199-202.Search in Google Scholar
[4] Grieve S, Adams J, McCabe C. “What I Really Needed Was the Truth”. Exploring the information needs of people with complex regional pain syndrome. Musculoskelet Care 2015, http://dx.doi.org/10.1002/msc.1107 [Epub ahead of print].Search in Google Scholar
[5] Grieve S, Jones L, Walsh N, McCabe C. What outcome measures are commonly used for complex regional pain syndrome clinical trials? A systematic review of the literature. Eur J Pain 2015, http://dx.doi.org/10.1002/ejp.733 [Epub ahead of print].Search in Google Scholar
© 2015 Scandinavian Association for the Study of Pain
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- Assessing insomnia in pain – Can short be good?
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- Reliability of pressure pain threshold testing (PPT) in healthy pain free young adults
- Observational study
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- Qualitative research in complex regional pain syndrome (CRPS)
- Topical review
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- Editorial comment
- Complex role of peroxisome proliferator activator receptors (PPARs) in nociception
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- Coping with painful sex – A neglected female problem
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- Coping with painful sex: Development and initial validation of the CHAMP Sexual Pain Coping Scale
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Articles in the same Issue
- Editorial comment
- Editorial comment on Helen Richardson’s and Stephen Morley’s study on “Action identification and meaning in life in chronic pain”
- Original experimental
- Action identification and meaning in life in chronic pain
- Editorial comment
- Editorial comment on Karlsson et al. “Cognitive behavior therapy in women with fibromyalgia. A randomized clinical trial”
- Clinical pain research
- Cognitive behaviour therapy in women with fibromyalgia: A randomized clinical trial
- Editorial comment
- Assessing insomnia in pain – Can short be good?
- Observational study
- The Swedish version of the Insomnia Severity Index: Factor structure analysis and psychometric properties in chronic pain patients
- Editorial comment
- Reliability of pressure pain threshold testing (PPT) in healthy pain free young adults
- Observational study
- Reliability of pressure pain threshold testing in healthy pain free young adults
- Editorial comment
- Qualitative research in complex regional pain syndrome (CRPS)
- Topical review
- Building the evidence for CRPS research from a lived experience perspective
- Editorial comment
- Complex role of peroxisome proliferator activator receptors (PPARs) in nociception
- Original experimental
- Systemic administration of WY-14643, a selective synthetic agonist of peroxisome proliferator activator receptor-alpha, alters spinal neuronal firing in a rodent model of neuropathic pain
- Editorial comment
- Evaluation of pain in children with communication difficulties: r-FLACC translated and validated in Nordic languages
- Clinical pain research
- Assessment of pain in children with cerebral palsy focused on translation and clinical feasibility of the revised FLACC score
- Clinical pain research
- The revised FLACC score: Reliability and validation for pain assessment in children with cerebral palsy
- Editorial comment
- Coping with painful sex – A neglected female problem
- Clinical pain research
- Coping with painful sex: Development and initial validation of the CHAMP Sexual Pain Coping Scale
- Original experimental
- Spatial summation of thermal stimuli assessed by a standardized, randomized, single-blinded technique
