Patients’ strategies for numeric pain assessment: a qualitative interview study of individuals with hypermobile Ehlers–Danlos Syndrome

Abstract

Purpose

Chronic pain is a common feature of hypermobile Ehlers–Danlos Syndrome (hEDS), yet how patients assess and communicate their pain remains poorly understood. The objective of the present study was to explore the use of numeric pain assessment in individuals with hEDS, from a patient-centered perspective.

Materials and methods

Our analysis is based on in-depth qualitative interviews. The interviews were conducted over the phone. Our participants were patients living with hEDS (N = 35). Interviews were recorded, transcribed, and analyzed to identify factors related to their use of these pain assessment instruments.

Results

Three primary themes emerged from these data, namely, (1) confusion around the quantification of multidimensional pain, (2) the subjectivity of pain experience, and (3) a strategic use of assessments for practical purposes beyond the accurate representation of pain.

Conclusions

These results demonstrate the need for caution in relying exclusively on numeric pain assessment instruments. We conclude with a brief proposal for a clinical communication strategy that may help to address the limitations of numeric pain assessment that were identified in our interviews.

Implications for Rehabilitation

• Chronic pain is a common feature of hypermobile Ehlers–Danlos Syndrome (hEDS), yet how patients assess and communicate their pain remains poorly understood.

• Clinicians should be aware that patients have difficulties with the Numeric Rating Scale (NRS) for at least three reasons: (1) confusion around the quantification of multidimensional pain, (2) the subjectivity of pain experience, and (3) a strategic use of assessments for practical purposes beyond the accurate representation of pain.

• Clinicians should use caution in relying exclusively on NRS instruments.

• Clinicians may benefit from using clinical communication strategies outlined in our paper, which may help to address the limitations of the NRS that were identified in our interviews.

Keywords:

• Chronic pain
• psychosocial
• qualitative research
• patient perspective
• measurement
• Numeric Rating Scale
• Ehlers–Danlos Syndromes

Acknowledgements

The authors thank the study participants for sharing their experiences. We would also like to thank Clair Francomano, Kurt Kroenke, and Heather Penwell, who reviewed earlier drafts of this paper. Research detailed in this publication was supported by the National Human Genome Research Institute of the National Institutes of Health under award number 1K01HG012408. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the Indiana Clinical and Translational Sciences Institute (IU Grand Challenges Program) and the Precision Health Initiative at Indiana University. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.