Duchenne from the third Decade (3D)
Functioning, quality of life and needs of health care in adults with Duchenne Muscular Dystrophy and their informal caregivers.

Life expectancy of boys with Duchenne Muscular Dystrophy has increased greatly
since the introduction of mechanical home ventilation. Over half of these
patients now reach an age over 25.
This implies a totally different perspective for this group of patients and
their parents than several decades ago, when average life expectancy was about
20 years. Children with DMD nowadays must be prepared for a meaningful adult
life with considerable physical limitations; they will now require intensive
daily care for a much longer period, implying a much greater burden for
imformal caregivers, notably parents. In the new group of adults with DMD new
health issues arise, posing new challenges for health care professionals.
Patient organisations stress the need for guidelines and coordination of care
for adults with DMD and support for their caregivers.
Until now there has been little research into functioning and quality of life
of adults with DMD and their caregivers.

The main research questions are:
1a. What are the functional status on all levels of ICF and quality of life of
adults with DMD?
1b. What are determinants of functional status and quality of life?
2a. What are burden of care and quality of life of informal caregivers of
adults with DMD?
2b. What are determinants of burden of care and quality of life?
3a. What are the needs and utilisation of health care services of adults with
DMD in relation to their functional status? Are there unmet needs?
3b. Do adult DMD patients experience they have made a successful transition
from paediatric rehabilitation care to adult care? What were success factors or
obstacles?

Cross-sectional, observational

In two home visits by the researchers, both lasting a maximum of two hours,
participants will be subjected to a limited physical examination (estimation of
joint contractures, hand function, weight/length), interviews and
questionnaires. Part of the questionnaires will be filled out by participants
in the period between the two home visits.
Caregivers will be asked to fill out a questionnaire.
Participation is without risk.