Identifying barriers and facilitators to physical activity for people with scleroderma: a nominal group technique study

Abstract

Purpose

People with systemic sclerosis (scleroderma) face difficulties being physically active. This study identified physical activity barriers and facilitators experienced by people with scleroderma.

Materials and methods

We conducted nominal group technique sessions with scleroderma patients who shared physical activity barriers, barrier-specific facilitators, and general facilitators. Participants rated importance of barriers and likelihood of using facilitators from 0 to 10, and indicated whether they had tried facilitators. Barriers and facilitators across sessions were merged to eliminate overlap; edited by investigators, patient advisors, and clinicians; and categorized using qualitative content analysis.

Results

We conducted 9 sessions (n = 41 participants) and initially generated 181 barriers, 457 barrier-specific facilitators, and 20 general facilitators. The number of consolidated barriers (barrier-specific facilitators in parentheses) per category were: 14 (61) for health and medical; 4 (23) for social and personal; 1 (3) for time, work, and lifestyle; and 1 (4) for environmental. There were 12 consolidated general facilitators. The consolidated items with ≥1/3 of participants’ ratings ≥8 were: 15 barriers, 69 barrier-specific facilitators, and 9 general facilitators.

Conclusions

Scleroderma patients reported many barriers related to health and medical aspects of scleroderma and several barriers in other categories. They reported facilitators to remain physically active despite the barriers.

Implications for Rehabilitation

• People with scleroderma experience difficulty being physically active due to the diverse and often severe manifestations of the disease, including involvement of the skin, musculoskeletal system, and internal organs.

• In addition to regular care of scleroderma-related symptoms, patients overcome many exercise challenges by selecting physical activities that are comfortable for them, adjusting the intensity and duration of activities, adapting activities, and using adapted equipment or other materials to reduce discomfort.

• Rehabilitation professionals should help people with scleroderma to tailor activity options to their capacity and needs when providing care and advice to promote physical activity.

Keywords:

• Exercise
• nominal group technique
• physical activity
• scleroderma
• systemic sclerosis

Acknowledgements

We thank the SPIN – Physical Activity Enhancement Patient Advisory Team for their ongoing contribution, including their review of survey items and suggestions for new items. Members include Lindsay Cronin, Southwestern Pennsylvania Scleroderma Support Group, Pittsburgh, USA; Catherine Fortuné, Ottawa Scleroderma Support Group, Ottawa, Canada; Amy Gietzen, Scleroderma Foundation, Danvers, USA; Geneviève Guillot, Sclérodermie Québec, Longueuil, Canada; Shirley Haslam, Scleroderma Society of Ontario, Hamilton, Canada; Karen Nielsen, Scleroderma Society of Ontario, Hamilton, Canada; Michelle Richard, Scleroderma Society of Nova Scotia, Halifax, Canada; Ken Rozee, Scleroderma Society of Nova Scotia, Halifax, Canada; and Joep Welling, Federation of European Scleroderma Associations, Brussels, Belgium. We also thank health care providers affiliated with SPIN for their review of survey items and suggestions for new items, including: Alexandra Albert, Ilham Benzidia, Camille Daste, María Martín López, Maureen D. Mayes, Susanna M. Proudman, Sébastien Rivière, Anne A. Schouffoer, Virginia D. Steen, and Fredrick M. Wigley.

Disclosure statement

No potential conflict of interest was reported by the author(s). Mr. Harb was supported by a Canadian Institutes of Health Research – Canada Graduate Scholarship-Master’s award. Ms. Rice was supported by a Vanier Graduate Scholarship. Dr. Thombs was supported by a Fonds de Recherche du Québec – Santé researcher salary award.

Additional information

Funding

This research was supported by a Canadian Institutes of Health Research – Strategy for Patient-Oriented Research Grant (PI Shrier) with partner funding from the Scleroderma Society of Ontario.