From cordoned consultations to cohesive care: A service evaluation of a one-stop, multi-speciality, hospice-based Duchenne muscular dystrophy clinic, UK.

BACKGROUND

Duchenne muscular dystrophy (DMD) is a multimorbid recessive genetic disorder. In 2020, a novel one-stop multi-disciplinary (MDT) DMD clinic was piloted in Jack's Place Hospice (registered charity number 1002832), Winchester, UK. This service evaluation aimed to assess the level of National Neuroscience Advisory Group guideline adherence [NNAG, 2024], and the patient views of the clinic format.

METHODS

Ten semi-structured interviews with patients attending the clinic were recorded, with nine subsequently transcribed and analysed using Braun & Clarke's six-stage reflexive thematic approach.

RESULTS

Participants perceived that all eleven relevant NNAG guidelines were being either fully or partially met by the DMD clinic. Participants preferred both the one-stop format of the clinic, and the hospice venue compared to hospital counterparts. This was due to superior facilities, reduced appointments and perceived better MDT communication.

CONCLUSION

The use of one-stop multi-speciality DMD clinics, utilising hospices as the forum, could improve guideline adherence, patient satisfaction, and engagement with palliative care.