Usage of Support Services in Primary Lateral Sclerosis
By Peters, Tracy L.; Floeter, Mary Kay; Amyotropic Lateral Sclerosis, Volume 10, pages 187-191Publication Date: 2009
Study investigated the need and use of assistive devices and support services among patients with primary lateral sclerosis (PLS). The study was undertaken as most patients with PLS receive services coordinated through clinics treating individuals with amyotropic lateral sclerosis (ALS), although PLS has a slower disease progression and different clinical spectrum. Participants were 25 PLS patients with a mean age of 59 years and a mean age at symptom onset of 45 years, 12 of whom were women. All participants completed a 17-item questionnaire; in addition 22 participants were contacted for follow-up, and medical charts were reviewed to obtain additional information. Survey results showed that the most prominent need overall, reported by 76 percent of participants, was for assistance with activities of daily living that involved mobility. All of the patients indicated that they used some form of gait-assistive device, including a cane, walker, wheelchair, or motorized scooter. Out of 22 patients that were followed up, 14 used gait-assistive devices prescribed by physicians or physical therapists, and 8 personally chose their device. The review of medical charts showed a clear progression from cane to walker to wheelchair over the course of several years. Only a few of the participants needed speech assistive or respiratory assistive devices. There was a striking use of the internet to gather information and for patient support groups. Overall, the needs of the participants with PLS were distinct from those of ALS patients, as they reported needing fewer types of support services, but those that were needed were required over an extended period of time.
Published by: Informa Healthcare (Website:http://www.informa.com/)
Link to text: http://informahealthcare.com/doi/pdf/10.1080/17482960902818224
