Research Insights

A disease-specific psychosocial questionnaire for Parkinson’s disease caregivers

Journal of Neurology

Spliethoff-Kamminga NG, Zwinderman AH, Springer MP, Roos RA A disease-specific psychosocial questionnaire for Parkinson’s disease caregivers Journal of Neurology, Oct; 250(10):1162-8

This article purported to look at a questionnaire measuring psychosocial difficulties faced by patients with PD and associated carers. This is a European study that begins by discussing the prevalence and demographic information for patients with PD in Europe, which were similar to the numbers for the United States. They whole heartedly discuss the importance of physicians focusing not only on the patient but on the carer as well, as both parties are involved on a day to day basis with this disease. The assessment tool they used, The Belasungsfragebogen Parkinson Angehorigen-kurzversion (BELA-A-k), looks at specific problems (physical, emotional, social, and family functioning) related to being a carer for someone with PD and the individual need for help related to that problem. The BELA-A-k has 15 items grouped into four subscales (achievement capability/physical symptoms, fear/emotional symptoms, social functioning, and partner-bonding/family) and are scored on a scale of 0 (not at all) to 4 (a great deal). Patients in this study were also given a functional health assessment scale, loneliness scale, and a quality of life scale. A total of 50 patients with partners (34 women, mean age 71.1, duration of patients PD=7.0 years, average carer hours given per day 3.5 [range 0-24], education most were high school educated or above) were assessed and asked to fill out the aforementioned materials. The authors found that caregivers were most concerned about fear/emotional functioning and achievement capability/physical symptoms. Carers reported that they were bothered by the future and less frequently bothered by sexuality difficulties and worsened financial position. The carers indicated that needed help due to feeling psychologically overwhelmed in their interactions with the partner. The authors found that their results were also related to the patient’s physical disability as measured by the Hoehn and Yahr scores. Interestingly the authors also reported observed comments from participants including that the carer appreciated focus on their concerns but also wanted to make sure their partner received full attention for his/her difficulties. The authors discussed that this scale was beneficial in discussing carers concerns and that it was more beneficial than a general quality of life scale as it focused on issues related to PD. The authors also discussed another quality of life scale for caregivers (the Scale of Quality of Life of Care-Givers, SQLC), which also sounds promising. The authors discussed the limitations of their study (small sample size, only looking at spouses not other carers. They ended by again highlighting the need for physicians to pay attention and ask questions about carer burden as it also has an effect on their patient and his/her quality of life.

Click here to read the abstract.

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