Patient experience of chronic illness care and complementary integrative health use: a cross-sectional study of patients with hypermobility spectrum disorders (HSD) and Ehlers–Danlos syndromes (EDS)

Abstract

Purpose

Hypermobility spectrum disorders (HSD) and Ehlers–Danlos syndromes (EDS) are frequently underdiagnosed, contributing to patient dissatisfaction in the healthcare system. This study evaluated the health service utilization, care, and subjective experiences of living with chronic illness among adults with HSD and EDS in the United States and Canada.

Methods

This was an anonymous, web-based, cross-sectional healthcare survey. The survey obtained basic demographic information, the Patient Assessment of Chronic Illness Care (PACIC+), as well as responses to questions on the use of healthcare and integrative medicine.

Results

A total of 353 surveys were received. The most common complementary therapies used were physical therapy (82%), massage (68%), yoga (58%), chiropractic (48%), and meditation (43%). Mean (SD) summary PACIC and PACIC 5 As scores were 2.16 (0.77) and 2.25 (0.83), respectively. Across all PACIC domains, mean scores of individuals whose typical doctor visit was 30 min or at least an hour were significantly higher than those of individuals who indicated typical visits of 15 min (all p < 0.0001 by one-way ANOVA). There was widespread agreement on the importance of patient-provider relationship and trust, physicians’ understanding of the individual’s complete medical history, and prioritization of physical and emotional safety (>95% agree or strongly agree to each).

Conclusion

Individuals with HSD or EDS report low satisfaction with chronic illness care and commonly seek out complementary and self-administered therapies, likely in an attempt to manage symptoms. Respondents reported a desire for greater time and attention from physicians. Results from this study could educate the healthcare community to improve support mechanisms for HSD and EDS populations.

IMPLICATIONS FOR REHABILITATION

• Patients with hypermobility spectrum disorders (HSD) or Ehlers–Danlos syndromes (EDS) express a desire for patient-centered care and peer support from other individuals with HSD or EDS.

• Individuals with HSD or EDS have typically seen multiple doctors for their condition and their satisfaction with chronic care, as measured by the Patient Assessment of Chronic Illness Care (PACIC+), is low.

• The use of various complementary and integrative health treatments, as well as specialized diets, is common in this population, and might be beneficial for symptom management.

• Healthcare delivery for HSD and EDS may require a multidisciplinary healthcare team, as complementary and self-care modalities are typically used in addition to physical therapy, pain medication, and other conventional care.

Keywords:

• Complementary integrative health
• descriptive study
• Ehlers–Danlos syndrome
• EDS
• health care survey
• hypermobility spectrum disorder
• HSD
• PACIC

Acknowledgments

The authors thank the Ehlers–Danlos Society for their generous participation and distribution of our survey and all participants who volunteered their time and voices to make this study possible. We would like to thank Luis Cardona, Erika Sánchez, and Melissa Bollen for their assistance with the Spanish survey translation and editing.

Disclosure statement

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