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Qualitative pain research emphasizes that patients need true information and physicians and nurses need more knowledge of complex regional pain syndrome (CRPS)

  • Harald Breivik EMAIL logo and Stephen Butler
Published/Copyright: April 1, 2017
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Scandinavian Journal of Pain
From the journal Scandinavian Journal of Pain Volume 15 Issue 1

Abstract

In this issue of the Scandinavian Journal of Pain Kari Sørensen and Bjørg Christiansen publish their report on in depth interviews of young patients suffering from CRPS or from severe muscle pain [1]. These patients were recovering from their chronic pain conditions after treatment by a multidisciplinary rehabilitation team.

1 Qualitative research of patients suffering from chronic, complex regional pain (CRPS)

This is not the first time there is focus in the Scandinavian Journal of Pain on qualitative research of patients with CRPS [2,3]. CRPS is the enigmatic pain condition that annually occurs in about 23–30 person among 100 000 inhabitants in the Netherlands [4] and most likely have a similar incidence rate in the Nordic countries. Half of these are precipitated by a fracture; about 10–15% occur after minor trauma, often so minor the patients cannot remember any clear inciting event. About 3/4 of CRPS after a fracture are pain-free after 5 years [4]. The prognosis is less favourable in those with a less certain inciting event.

Qualitative research comprises structured, in-depth interviews and methods for systematic analyses of the patients’ responses [5]. The qualitative study of CRPS patients by Johnston and coworkers published in 2015 in the Scandinavian Journal of Pain [2] and the present by Sørensen and Christiansen [1] indicate that patients with a chronic pain condition hunger for information about their illness. They often meet health care providers who are less than optimally equipped with knowledge and experience about CRPS and other chronic pain conditions. It is not difficult to understand that this causes frustration and an unnecessary burden of anxiety and depression among patients and their relatives [1, 2].

2 Patient reported outcome measures (PRO) as “semi-qualitative” research tools

Stephen Butler [3] emphasized in his comment to the Johnston study [2] that qualitative research methods have influenced traditional pain research, e.g. in that the FDA and EMA require patients’ reports of their experience when taking trial drugs. These can be “semi-qualitative research tools”, structured interviews and cognitive debriefing of patients or subjects taking part in such trials [3].

3 In-depth interviews of patients show that there still is a lack of knowledge about CRPS

What impresses us the most from these in-depth interviews of adolescents as well as adult patients with longstanding CRPS is how often the burden of suffering is aggravated by lack of knowledge among doctors and nurses. This influences attitudes towards patients and the information the patients receive from health care providers [6,7]. Patients experience too often being met with mistrust and sceptic disbelief and attitudes: “the degree of pain and suffering do not make sense in patients who developed this dramatic pain condition after a minor trauma”.

Lack of knowledge leads to delayed diagnosis, wrong diagnoses, and unhelpful treatments. Treatments with focus on other possible causes of extremity-pain may delay correct diagnosis and optimal treatment of CRPS. If a surgeon is tempted to explore the painful area, maybe hoping to find a nerve entrapped by the tissue-injury that inciting the CRPS, the pathogenic process may be re-activated, making the pain even more burdensome [6,7]. In a subsequent qualitative interview, the patient will describe such experiences as extremely traumatic and negative [1,2].

4 Avoid surgery, avoid re-operations

A surgical “hands-off” approach is important, especially in CRPS after trauma, fracture, and in conditions that are caused by possible nerve-entrapment or injury [6]. A suspicion of carpal tunnel or tarsal tunnel syndrome must be verified by nerve conduction studies before surgery is attempted in an extremity with several of the signs and symptoms of a developing CRPS-condition. Recent experience suggests there may be a life-long alteration in pain-modulation-mechanisms in the CNS of patients who have had a CRPS: operation or trauma in another extremity may cause a new instance of CRPS in a previously healthy foot or hand [8,9].

5 IASP-diagnostic criteria for complex regional pain syndrome (Budapest criteria)

We list here the Budapest consensus on diagnostic criteria for CRPS [10], hoping that reminding our readers again [7,9] may contribute to some increased understanding and vigilance when meeting one of these unfortunate patients:

  1. The patient has continuous pain, often disproportionate to any inciting event.

  2. Patient must report at least 1 symptom in 3 of the 4 categories below:

    1. Sensory symptoms: Patient reports hyperesthesia and/or allodynia

    2. Vasomotor symptoms: Patient reports temperature asymmetry and/or skin colour-changes and/or colour asymmetry

    3. Sudomotor or oedema symptoms: Patient reports oedema and/or sweating changes and/or sweating asymmetry

    4. Motor or trophic symptoms: Patient reports decreased range of motion and/or motor dysfunction e.g. weakness, tremor, dystonia, and/or trophic changes in hair, nails, skin.

  3. Must show at least 1 sign in 2 or more of the following 4 categories:

    1. Sensory signs: hyperalgesia to pinprick, allodynia to light touch or joint movement

    2. Vasomotor signs: temperature asymmetry or skin colour asymmetry

    3. Sudomotor or oedema signs: oedema and/or sweating asymmetry

    4. Motor or trophic signs: decreased range of motion, and/or muscle weakness, tremor, dystonia, and/or trophic changes of hair, nails, skin.

  4. No other diagnosis better explains the symptoms and signs.

6 Appropriate patient information is a sine qua none for management of CRPS

The NICE recommendations contain a draft document for patient-information that can be helpful [11]. But information is helpful only if the patient experiences that the health care provider giving it is knowledgeable and experienced [12]. A relatively infrequent pain disease that is not easy to treat, ideally should be managed by qualified multimodal, multidisciplinary teams that can focus on all aspects of this bio-psycho-social pain condition [13].

7 Conclusions

This qualitative study emphasizes the importance of listening carefully to patients [1]. As stated above, patients need time to explain their problem and they need an empathetic practitioner that they can trust so that an optimum therapeutic relationship can be formed for more effective treatment [1,14]. Treatment is for the patient and the patient’s needs, not just for a diagnosis. The diagnosis of CRPS is not always obvious but as with the Budapest criteria, the patient’s description is all important in making the diagnosis. Too often, the rush of modern medicine ignores the fact that dialogue is an integral part of treatment and time is needed to do this effectively[14].

DOI of refers to article: http://dx.doi.org/10.1016/j.sjpain.2017.02.002.

Oslo University Hospital, Department of Pain Management and Research, Pbox 4956 Nydalen, 0424 Oslo, Norway. Fax: +47 23073690.

  1. Conflict of interest: None declared.

References

[1] Sørensen K, Christiansen B. Adolescents’ experience of complex persistent pain. Scand J Pain 2017;15:106–12.Search in Google Scholar

[2] 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

[3] Butler S. Qualitative research in complex regional pain syndrome (CRPS). Scand J Pain 2015;9:62–3.Search in Google Scholar

[4] de Mos M, de Bruijn AG, Huygen FJ, Dieleman JP, Stricker BH, Sturkenboom MC. The incidence of complex regional pain syndrome: a population-based study. Pain 2007;129:12–20.Search in Google Scholar

[5] Given LM, editor. The SAGE encyclopedia of qualitative research methods. Thousand Oaks, CA: SAGE Publications, Inc.; 2008.Search in Google Scholar

[6] LundenLK, Kleggetveit IP, Jørum E. Delayed diagnosis and worsening of pain following orthopaedic surgery in patients with complex regional pain syndrome (CRPS). Scan J Pain 2016;11:27–33.Search in Google Scholar

[7] Breivik H, Stubhaug A. Importance of early diagnosis of complex regional pain syndrome (CRPS-1 and C RPS-2). Scand J Pain 2016;11:49–51.Search in Google Scholar

[8] Satteson ES, Jarbpur PW, Koman LA, Smith BP, Li Z. The risk of pain syndrome affecting a previously non-painful limb following trauma or surgery in patients with a history of complex regional pain syndrome. Scand J Pain 2017;14:84–8.Search in Google Scholar

[9] Breivik H. Complex regional pain syndrome (CRPS): high risk of CRPS after trauma in another limb in patients who already have CRPS in one hand or foot: Lasting changes in neural pain modulating systems? Scand J Pain 2017;14:82–3.Search in Google Scholar

[10] Bruehl S. Complex regional pain syndrome. BMJ 2015;350:h2730.Search in Google Scholar

[11] Turner-Stokes L, Goebel A. Complex regional pain syndrome in adults: concise guidance. Clin Med 2011;11:596–600.Search in Google Scholar

[12] 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

[13] Liossi C, Clinch J, Howard R. Need for early recognition and multidisciplinary management of paediatric complex regional pain syndrome. Brit Med J 2015;351:h4748.Search in Google Scholar

[14] Breivik H. Re-enforcing therapeutic effect by positive expectations of pain-relief from our interventions. Scand J Pain 2017;14:76–7.Search in Google Scholar
Published Online: 2017-04-01
Published in Print: 2017-04-01

© 2017 Scandinavian Association for the Study of Pain

Articles in the same Issue

  2. Scandinavian Journal of Pain
  3. Editorial comment
  4. Cardiovascular risk reduction as a population strategy for preventing pain?
  5. Observational study
  6. Diabetes mellitus and hyperlipidaemia as risk factors for frequent pain in the back, neck and/or shoulders/arms among adults in Stockholm 2006 to 2010 – Results from the Stockholm Public Health Cohort
  7. Editorial comment
  8. Exercising non-painful muscles can induce hypoalgesia in individuals with chronic pain
  9. Clinical pain research
  10. Exercise induced hypoalgesia is elicited by isometric, but not aerobic exercise in individuals with chronic whiplash associated disorders
  11. Editorial comment
  12. Education of nurses and medical doctors is a sine qua non for improving pain management of hospitalized patients, but not enough
  13. Observational study
  14. Acute pain in the emergency department: Effect of an educational intervention
  15. Editorial comment
  16. Home training in sensorimotor discrimination reduces pain in complex regional pain syndrome (CRPS)
  17. Original experimental
  18. Pain reduction due to novel sensory-motor training in Complex Regional Pain Syndrome I – A pilot study
  19. Editorial comment
  20. How can pain management be improved in hospitalized patients?
  21. Original experimental
  22. Pain and pain management in hospitalized patients before and after an intervention
  23. Editorial comment
  24. Is musculoskeletal pain associated with work engagement?
  25. Clinical pain research
  26. Relationship of musculoskeletal pain and well-being at work – Does pain matter?
  27. Editorial comment
  28. Preoperative quantitative sensory testing (QST) predicting postoperative pain: Image or mirage?
  29. Systematic review
  30. Are preoperative experimental pain assessments correlated with clinical pain outcomes after surgery? A systematic review
  31. Editorial comment
  32. A possible biomarker of low back pain: 18F-FDeoxyGlucose uptake in PETscan and CT of the spinal cord
  33. Observational study
  34. Detection of nociceptive-related metabolic activity in the spinal cord of low back pain patients using 18F-FDG PET/CT
  35. Editorial comment
  36. Patients’ subjective acute pain rating scales (VAS, NRS) are fine; more elaborate evaluations needed for chronic pain, especially in the elderly and demented patients
  37. Clinical pain research
  38. How do medical students use and understand pain rating scales?
  39. Editorial comment
  40. Opioids and the gut; not only constipation and laxatives
  41. Observational study
  42. Healthcare resource use and costs of opioid-induced constipation among non-cancer and cancer patients on opioid therapy: A nationwide register-based cohort study in Denmark
  43. Editorial comment
  44. Relief of phantom limb pain using mirror therapy: A bit more optimism from retrospective analysis of two studies
  45. Clinical pain research
  46. Trajectory of phantom limb pain relief using mirror therapy: Retrospective analysis of two studies
  47. Editorial comment
  48. Qualitative pain research emphasizes that patients need true information and physicians and nurses need more knowledge of complex regional pain syndrome (CRPS)
  49. Clinical pain research
  50. Adolescents’ experience of complex persistent pain
  51. Editorial comment
  52. New knowledge reduces risk of damage to spinal cord from spinal haematoma after epidural- or spinal-analgesia and from spinal cord stimulator leads
  53. Review
  54. Neuraxial blocks and spinal haematoma: Review of 166 case reports published 1994–2015. Part 1: Demographics and risk-factors
  55. Review
  56. Neuraxial blocks and spinal haematoma: Review of 166 cases published 1994 – 2015. Part 2: diagnosis, treatment, and outcome
  57. Editorial comment
  58. CNS–mechanisms contribute to chronification of pain
  59. Topical review
  60. A neurobiologist’s attempt to understand persistent pain
  61. Editorial Comment
  62. The triumvirate of co-morbid chronic pain, depression, and cognitive impairment: Attacking this “chicken-and-egg” in novel ways
  63. Observational study
  64. Pain and major depressive disorder: Associations with cognitive impairment as measured by the THINC-integrated tool (THINC-it)
https://doi.org/10.1016/j.sjpain.2017.02.004

Articles in the same Issue

  2. Scandinavian Journal of Pain
  3. Editorial comment
  4. Cardiovascular risk reduction as a population strategy for preventing pain?
  5. Observational study
  6. Diabetes mellitus and hyperlipidaemia as risk factors for frequent pain in the back, neck and/or shoulders/arms among adults in Stockholm 2006 to 2010 – Results from the Stockholm Public Health Cohort
  7. Editorial comment
  8. Exercising non-painful muscles can induce hypoalgesia in individuals with chronic pain
  9. Clinical pain research
  10. Exercise induced hypoalgesia is elicited by isometric, but not aerobic exercise in individuals with chronic whiplash associated disorders
  11. Editorial comment
  12. Education of nurses and medical doctors is a sine qua non for improving pain management of hospitalized patients, but not enough
  13. Observational study
  14. Acute pain in the emergency department: Effect of an educational intervention
  15. Editorial comment
  16. Home training in sensorimotor discrimination reduces pain in complex regional pain syndrome (CRPS)
  17. Original experimental
  18. Pain reduction due to novel sensory-motor training in Complex Regional Pain Syndrome I – A pilot study
  19. Editorial comment
  20. How can pain management be improved in hospitalized patients?
  21. Original experimental
  22. Pain and pain management in hospitalized patients before and after an intervention
  23. Editorial comment
  24. Is musculoskeletal pain associated with work engagement?
  25. Clinical pain research
  26. Relationship of musculoskeletal pain and well-being at work – Does pain matter?
  27. Editorial comment
  28. Preoperative quantitative sensory testing (QST) predicting postoperative pain: Image or mirage?
  29. Systematic review
  30. Are preoperative experimental pain assessments correlated with clinical pain outcomes after surgery? A systematic review
  31. Editorial comment
  32. A possible biomarker of low back pain: 18F-FDeoxyGlucose uptake in PETscan and CT of the spinal cord
  33. Observational study
  34. Detection of nociceptive-related metabolic activity in the spinal cord of low back pain patients using 18F-FDG PET/CT
  35. Editorial comment
  36. Patients’ subjective acute pain rating scales (VAS, NRS) are fine; more elaborate evaluations needed for chronic pain, especially in the elderly and demented patients
  37. Clinical pain research
  38. How do medical students use and understand pain rating scales?
  39. Editorial comment
  40. Opioids and the gut; not only constipation and laxatives
  41. Observational study
  42. Healthcare resource use and costs of opioid-induced constipation among non-cancer and cancer patients on opioid therapy: A nationwide register-based cohort study in Denmark
  43. Editorial comment
  44. Relief of phantom limb pain using mirror therapy: A bit more optimism from retrospective analysis of two studies
  45. Clinical pain research
  46. Trajectory of phantom limb pain relief using mirror therapy: Retrospective analysis of two studies
  47. Editorial comment
  48. Qualitative pain research emphasizes that patients need true information and physicians and nurses need more knowledge of complex regional pain syndrome (CRPS)
  49. Clinical pain research
  50. Adolescents’ experience of complex persistent pain
  51. Editorial comment
  52. New knowledge reduces risk of damage to spinal cord from spinal haematoma after epidural- or spinal-analgesia and from spinal cord stimulator leads
  53. Review
  54. Neuraxial blocks and spinal haematoma: Review of 166 case reports published 1994–2015. Part 1: Demographics and risk-factors
  55. Review
  56. Neuraxial blocks and spinal haematoma: Review of 166 cases published 1994 – 2015. Part 2: diagnosis, treatment, and outcome
  57. Editorial comment
  58. CNS–mechanisms contribute to chronification of pain
  59. Topical review
  60. A neurobiologist’s attempt to understand persistent pain
  61. Editorial Comment
  62. The triumvirate of co-morbid chronic pain, depression, and cognitive impairment: Attacking this “chicken-and-egg” in novel ways
  63. Observational study
  64. Pain and major depressive disorder: Associations with cognitive impairment as measured by the THINC-integrated tool (THINC-it)
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