Remaining At Home With Severe Disability.

A person with primary progressive multiple sclerosis manages a complex scheme of personal assistance services to remain living at home.

Performance metrics for power wheelchairs: a pipe dream?

Power wheelchair (PWC) users depend on their equipment to reliably transport them throughout daily activities and allow them to participate fully in community life. However, as reported by Worobey and colleagues, PWCs frequently require repairs and cause users a variety of problems, which can range from annoying to catastrophic. These authors suggest that comparing the performance of individual PWC makes and models--a PWC Consumer Reports--might be helpful to inform users and others about the relative quality of different products. Although a comparative report is an appealing idea, we suggest that producing meaningful comparisons of specific PWCs, especially complex rehabilitation PWCs, confronts significant methodologic and practical hurdles. Challenges include dealing with small sample sizes for individual products, risk-adjusting outcomes to account for systematic differences in patterns of use, specifying meaningful outcome metrics, distinguishing the contributions of manufacturers and PWC suppliers to suboptimal performance, and disentangling the myriad components of complex rehabilitation PWCs, which often carry parts from multiple manufacturers. In any case, most users have little control over their PWC selections, with the policies of health insurers and other factors largely dictating equipment choices. Considering these various concerns, we argue that producing a valid and useful Consumer Reports for PWCs will be difficult and, at least for complex rehabilitation chairs, will be of limited value.

Hard lessons from a long hospital stay.

This narrative is related in the alternating voices of the two authors. One author, a 55-year-old man, quadriplegic from primary progressive multiple sclerosis, describes the 10 weeks he spent in four facilities for treatment of a stage IV ischial pressure ulcer. The other author, his friend and health care proxy, describes the advocacy and personal assistance she gave him in the face of often inadequate care that at times threatened his safety, comfort, and emotional well-being. The authors describe their differing perspectives on this care, which involved a transfer onto his open wound, frequently missed meals, and poor bowel management and personal hygiene. They believe that inadequate staffing and insufficient training and supervision of nursing assistants, among other factors, underlay these problems.