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Patients with Duchenne muscular dystrophy (DMD) are living longer; in the 1960s, the average age of survival was 14.4 years, but now they live well into their 20s and beyond.1 Despite this improved prognosis, we rarely see them under adult palliative care services. Furthermore, patients with motor neuron disease (MND), which has a similar clinical burden are frequently treated in adult hospices. This survey aims to quantify hospices that admit patients with DMD, and explore why these reasons may be different to patients with MND.
A mixed qualitative and quantitative questionnaire was devised (see online supplemental appendix 1). All hospices in England, Scotland and Wales with an inpatient unit were contacted between November 2018 and June 2019. A total of 204 hospices were identified on the Hospice UK website; 13 were excluded and the remaining 191 were contacted.
The aim was to conduct telephone interviews structured around the questionnaire. These answers were then transcribed into Google Sheets. However, due to time constraints and poor responses, questionnaires were instead sent via email. Answers were collated, and thematic analysis was conducted using an inductive approach.
In total, 78 out of 191 hospices (41%) responded to the questionnaire; 42 via email (54%), 32 via telephone (41%) and 4 in person (5%). The questionnaire was answered most commonly by the clinical lead (see online supplemental appendix 2 for full list).
Seventy-seven (98.7%) hospices have admitted patients with MND to their inpatient unit—the one …
Contributors RT planned the study, collected and analysed the data and drafted the manuscript. DW and TAW conceived the study and supervised RT throughout, they advised on study design and data reporting. HK and LN assisted in writing the manuscript.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; internally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.