Dedicated occupational therapy and physiotherapy service for children and families with Osteogenesis Imperfecta (OI) at the Royal Manchester Childrens Hospital were set up in September 2017 to provide multidisciplinary management.
Objectives: The aim is to assess if the newly established specialist paediatric occupational therapy and physiotherapy service is meeting the needs of the patients and their families.
Method: A paper questionnaire with an electronic link was distributed to families during their hospital attendance. The questionnaire comprising 10 questions looked at gaining information regarding: - Usefulness of assessment and advice provided during individual sessions and during multi-disciplinary OI clinics
- Satisfaction with the service provided
- Helpfulness of home visits, school visits and written reports
- Therapy services which may be beneficial to offer in the future
Results: The questionnaire has been distributed to 25 families. The response rate for the questionnaire is 65%. Of the respondents 73% were parents. All respondents gave highest rank to the advice and information provided to them for management of OI. 73% of the respondents had attended a multidisciplinary clinic and 66% had rated their satisfaction level of the experience at 8 or above, 10 being the most satisfied. 66% rated the written reports received following clinic as excellent or good. 60% had been seen whilst attending hospital for infusions and 53% rated the experience as useful. School visits and home visits had been carried out with 33% of respondents and these had been rated as definitely helpful. 80% of the respondents rated their overall satisfaction with the service as 8 or above, 10 being most satisfied. With regards to future developments, patients/families suggested group sessions to share their experiences, written information tailored specifically to the needs of their child and local OI family days.
Conclusion: The patient/families current opinion of the specialist therapy was positive. We are using the valuable feedback to enhance our services paying special attention to providing individualized written information regarding OI. We are also planning to organise family days for patients/families.
Disclosure: The authors declared no competing interests.