Endocrine Abstracts

Background: Recent research on experiences of adults with a rare endocrine condition/disease (RED) indicate a preference for greater access to allied health professionals including physiotherapists.

Objective: To explore experiences of musculoskeletal (MSK) symptoms (typically managed by physiotherapy) of adults living with a RED and investigate their reported usage and satisfaction of MSK physiotherapy services.

Method: Ethically approved, quantitative survey disseminated via social media and UK online support groups. 256 participants (232 from the UK, 24 outside the UK) aged 18+ with a RED diagnosis of ≥3 months (RED defined as affecting ≤1 per 2,000 of the population).

Results: 78.1% of participants (n=200) experienced ≥5 MSK symptoms, from a maximum of 14 symptoms compiled from case studies/RED symptom checklists. The most common symptom was fatigue 92.2% (n=236). 43.0% of total participants (n=110) were referred to physiotherapy. Of 232 UK participants, 41.8% (n=97) saw/were referred to 136 UK physiotherapy settings: 59.8% (n=58) NHS physiotherapy, 17.5% (n=17) private physiotherapy and 22.7% (n=22) both private and NHS physiotherapy. 54.0% (n=82) of 152 UK participants without a referral (mode ≥7 symptoms) would have liked a referral. Over 73% of participants rated NHS community (n=14), NHS inpatient (n=15), private community (n=3) and private outpatient services (n=35) as good quality and helpful for managing their condition and 57.4% rated NHS outpatients (n=68) as good quality. NHS inpatient physiotherapists were most highly rated for understanding of RED, (73.3% good) with NHS outpatients at 29.4%.

Conclusions: This is a novel study exploring experiences and perceptions of physiotherapy from people living with REDs. Findings indicate that physiotherapy can be helpful in managing symptoms and corroborates a growing area of research, suggesting access to wider multi-disciplinary healthcare teams may be beneficial. Therapists’ knowledge of RED may be dependent on setting and further research is required.