A review of the experiences of children and young adults with Primary Ciliary Dyskinesia (PCD) treated in a specialist PCD service in England

Background: To review children and their family’s experiences of PCD care provided by the 4 specialist teams commissioned to deliver PCD care in England, and establish if the current service meets their needs. Methods: Satisfaction surveys were developed: one for teenagers (12–18yrs), another for parents/carers. These were available in electronic (online) and paper form. Teenagers/families were approached at clinic, by telephone and via email and the survey was also publicised through the UK PCD Family Support Group. Responses were collected between March and October 2018. Results: 407 patients (176 teenagers) from 324 families were under the care of this Service at the time of the surveys. Of these 324 families, 93 parents/carers and 38 teenagers participated. In general, those who responded felt access to the specialist PCD team met their ideals however 51% would like access to a psychologist with only 22% having been offered a review by one and 20% would like input from a social worker. Attitudes towards research were positive, with 87% agreeing it was important to have access to participate in research studies. Of note, 40% of parents/carers reported having problems accessing antibiotics in the community. Encouragingly, 93% of parents/carers and 94% of teenagers believed the specialist PCD service had improved their care. Conclusions: >93% of parents/carers and teenagers felt that the specialist PCD service had improved their PCD care and the current service for the most part met their ideals. Access to psychology and social work services and difficulties obtaining antibiotics in the community were highlighted as issues to be addressed.