Fibromyalgia: Patients’ Perspectives of Quality of Life and Occupation

PURPOSE: The purpose of this study was to explore engaged patients’ perceptions on quality of life and occupation of individuals who have fibromyalgia instead of the traditional medical model such as the SF–36, which focuses on symptoms (Arnold et al., 2008; Bergman, 2005). This study aligns itself with the American Occupational Therapy Association’s (AOTA’s; 2017) Vision 2025 to improve quality of life for all populations through participation in everyday activities. This study provides a greater understanding of the impact of fibromyalgia on quality of life from patients’ own voices with the hope of improving patient engagement, patient experience, patient care, and occupational autonomy.

DESIGN: This qualitative study based on grounded theory explored patients’ perspectives of quality of life and occupations of people with fibromyalgia through an online survey of open-ended questions using SurveyMonkey (San Mateo, CA). The team recruited participants by posting a link to the survey on Twitter and two fibromyalgia closed Facebook communities. Members of the Facebook communities consisted of 6,622 patients engaged in their own health care who share their experiences in order to find new ways to manage chronic conditions and provide support. Once recruited, participants reported data through SurveyMonkey. The inclusion criteria consisted of individuals age 18 and older living in the United States who self-reported a fibromyalgia diagnosis by a health care provider. Participants needed to read, comprehend, and respond to the informed consent and survey screening to ensure inclusion criteria were met.

METHOD: Following approval from the institutional review board, engaged patients with fibromyalgia responded via a link to SurveyMonkey about how they defined quality of life and how fibromyalgia affected their occupations through eight open-ended questions. Using multiple sources increased rigor of the data by recruiting participants from the Internet that have a larger mixed population. Three researchers coded themes through an iterative, deductive process, and an experienced qualitative researcher reviewed developed themes. The team used triangulation to validate gathered information with other available sources. The team monitored saturation to ensure a comprehensive account of information to answer research aims. Multiple researchers participated to support the interpretation of data.

RESULTS: Saturation was reached at Participant 24. Major themes and subthemes emerged revealing perspectives on quality of life as the ability to do what you want to do when you want to do it, participation, happiness, feeling good, life without pain and limitations, acceptance, important, and always fluctuating.

CONCLUSION: Patients defined quality of life as participation in valued and chosen occupations, which is consistent with the theory of occupational autonomy. Engaged patients’ experiences showed that participating in valued occupations defined improved quality of life as opposed to focusing on defined symptoms. AOTA’s Vision 2025 supports this conclusion and shows that occupational therapists can focus on quality of life through occupation-based interventions.

IMPACT STATEMENT: Quality of life for actively engaged patients with fibromyalgia depends on their involvement in desired occupations. This finding lends support to occupational therapists focusing on true occupational interventions rather than treating medically defined symptoms.

References

American Occupational Therapy Association. (2017). Vision 2025. American Journal of Occupational Therapy, 71, 7103420010. https://doi.org/10.5014/ajot.2017.713002

Arnold, L. M., Crofford, L. J., Mease, P. J., Burgess, S. M., Palmer, S. C., Abetz, L., & Martin, S. A. (2008). Patient perspectives on the impact of fibromyalgia. Patient Education and Counseling, 73, 114–120. https://doi.org/10.1016/j.pec.2008.06.005

Bergman, S. (2005). Psychosocial aspects of chronic widespread pain and fibromyalgia. Disability and Rehabilitation, 27, 675–683. https://doi.org/10.1080/09638280400009030

Cunningham, M. M., & Jillings, C. (2006). Individuals’ descriptions of living with fibromyalgia. Clinical Nursing Research, 15, 258–273. https://doi.org/10.1177/1054773806291853