For such a long time it seems that pain research has focused only on the person having pain and less on the social context where the person is experiencing it. Pain is subjective, personal and private, and the only way I can determine whether someone is in pain is if they’re exhibiting pain behaviours. Some of these behaviours, it’s true, are automatic reflex-driven responses (nocifensive, to be pedantic) – but usually only once the brain determines that the input received is a threat. And what the brain determines to be threatening depends on a whole lot of things, including what else is going on in the environment.
We have numerous pen and paper measures of pain behaviour, but far fewer tools to capture what is one of the most important exchanges in an individual’s pain experience: the healthcare encounter. It’s not easy to measure or assess this experience. It’s usually carried out behind closed doors, it’s subject to confidentiality, and there is a certain mystique about the process – especially if you’re the person seeking help.
To give you a clue, in a systematic review by Stomski, Mackintosh and Stanley, articles written between 1950 and April 2008 were sought, 3328 articles were identified, and 88 full text studies were obtained. Of these, 58 potential measures were identified but only 4 met the inclusion criteria for review. These criteria were studies that involved “validation of consultation measures in chronic nonspecific pain populations were included. Chronic pain was defined as either intermittent or consistent pain that had persisted for at least 3 months.”
The four measures were Treatment Helpfulness Questionnaire (Chapman, Jamison, Sanders, 2000); Trust in Physician Scale (Freburger, Callahan, Currey, 2003); Picker Musculoskeletal Disorder Questionnaire (Jenkinson, Coulter, Gyll, 2002); and Modified Perceived Involvement in Care Scale (Smith, Winkel, Egert, 2006).
The purpose of this review was to identify and critique these measures in terms of their psychometric properties and their practical use in clinical settings. Things like patient response burden, ease of scoring and so on are important when deciding on a measurement tool that can be used in the “real” world!
The question has been asked by health professionals: why not just ask the person? Or why not just trust our assessment? I don’t intend to go through all the reasons for ensuring adequate psychometric properties of assessment instruments, these should be evident (things like validity, reliability and so on), but I do think it’s worthwhile considering how accurate health provider assessments of pain actually are. Here’s the situation:
- health professionals frequently underestimate pain intensity
- health providers often don’t convey the belief that the person’s experience is valid/real
- health providers may not enquire about very important aspects of the person’s experience – things like personal beliefs, mood, catastrophising and so on
- health providers assume the relationship between themselves and the person are good, when they may not be
- health providers may not work collaboratively with the person who has the pain to allow the person with pain to make the decisions about treatment options.
There are three areas within the consultation that may improve this situation: health professionals’ self-assessment, peer review, and patients’ self-assessment. The four measures identified above appear to be the most suited for assessing what the person with pain thinks of the consultation. But what these authors found was that patients weren’t involved in generating the items for any of these measures. Content validity is therefore questionable. Internal consistency for each measure was acceptable (that’s whether the measure is measuring a single construct, or more than one construct), but test-retest reliability wasn’t available, so it’s impossible to determine how much influence random variation plays on the scores obtained. The authors of this paper remark that the developers of each scale don’t appear to have considered the purpose for which the scales were developed, and as a result haven’t conducted adequate studies to determine whether the measures actually do the job. So, for example, the questionnaire developers haven’t discussed things like whether the questionnaires are responsiveto change, discriminate between high or low attributes, or the number of measures that need to be taken to obtain reliable feedback for a provider.
The authors of this paper suggest that there is much to be learned about healthcare consultations between individuals with pain and their healthcare provider. They suggest that patient-provider interactions need qualitative exploration to generate theoretical models to be tested and empirically determined. For a really recent paper on this, Ronald Chenail of Nova Southeastern University, Fort Lauderdale has written in The Qualitative Report just this month about appropriate research designs that might be used. In it he describes the types of research that can be conducted into patient experiences – Preconceptions, Treatment Experiences; Quality of Life; Satisfaction; Illness Understandings; and Design. He describes five qualitative designs for exploring these areas, and ten steps for conducting a clinical qualitative study on patient experience.
Stomski, N., Mackintosh, S., & Stanley, M (2010). Patient Self-report Measures of Chronic Pain Consultation Measures: A Systematic Review Clinical Journal of Pain, 26 (3) DOI: 10.1097/AJP.0b013e3181c84e76
Chapman SL, Jamison RN, Sanders SH, et al. Perceived
treatment helpfulness and cost in chronic pain rehabilitation.
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Freburger JK, Callahan LF, Currey SS, et al. Use of the trust
in physician scale in patients with rheumatic disease: psychometric
properties and correlates of trust in the rheumatologist.
Arthritis Care Res. 2003;49:51–58.
Jenkinson C, Coulter A, Gyll R, et al. Measuring the experiences
of health care for patients with musculoskeletal disorders
(MSD): development of the picker MSD questionnaire. Scand
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Smith MY, Winkel G, Egert J, et al. Patient-physician
communication in the context of persistent pain: validation
of a modified version of the patients’ perceived involvement in
care scale. J Pain Symptom Manage. 2006;32:71–81.
Chenail, R. (2011). How to conduct clinical qualitative research on the patient’s experience. The Qualitative Report. 16(4);pp 1173-1190