Practical problems and management of seating through the clinical stages of Duchenne's muscular dystrophy.

OBJECTIVE

To describe seating problems in patients with Duchenne's muscular dystrophy (DMD), for the purpose of identifying management solutions that are practicable for both patient and caregiver.

DESIGN

Case series.

SETTING

A Japanese long-term care facility.

PARTICIPANTS

Ninety-five patients with DMD (mean age, 15.9+/-4.4y; Swinyard stages: stage 5, n=17; stage 6, n=24; stage 7, n=33; stage 8, n=21).

INTERVENTIONS

Not applicable.

MAIN OUTCOME MEASURES

Spinal deformity types, frequency and sites of pain, wheelchair propulsive ability, activities of daily living, and caregiving-related problems.

RESULTS

Thirty-three percent of the patients belonged to the early straight group, 21% to the scoliotic group, 20% to the kyphoscoliotic group, 2% to the kyphotic group, and 24% to the extended spine group. The percentage needing support for sitting was higher in patients with spinal deformities (76% vs 0%, P<.05). Forty-one percent had pressure problems, and the percentage increased with advancing stages, with pain sites related to spinal deformity types. Self-feeding was difficult in 10 patients having spinal deformities. Four patterns of manual wheelchair propulsion were observed: upper extremity, anteroposterior trunk flexion, lateral trunk flexion, and wrist-hand patterns; and propulsion became increasingly less practical in this order. For toileting, more patients were cared for on wheelchairs with backrests reclined with stage progression. Of 60 caregivers, 58% experienced trauma related to seating systems.

CONCLUSION

The seating problems that were identified enabled specific, practical suggestions to be made for better management.