ABSTRACT
The goal of the Patient Education Program for Huntington's disease is to improve quality of life for patients and caregivers, to educate and train them in order to develop coping strategies to deal with psychosocial stressors. The program was derived from a standardized evidence-based program for Parkinson's disease. This pilot study assessed the feasibility of the program in Huntington's disease. Forty manifest patients with 28 caregivers and 19 premanifest carriers with 14 partners participated. Assessments for depression and anxiety, psychosocial burden, need for help, quality of life, coping, behavioral, motor and cognitive status were performed. After program completion, significant improvement of behavioral symptoms and anxiety was found for manifest HD patients, and they used a less passive coping style and more social support. Their caregivers reported less psychosocial burden. Premanifest carriers and their partners improved their coping by seeking social support more often. This pilot study demonstrated the feasibility of the program in Huntington's disease, especially in the manifest stage of the disease. Further research to assess the effectiveness of the program seems warranted.
Subject(s)
Caregivers/education , Huntington Disease , Patient Education as Topic , Adult , Aged , Female , Humans , Huntington Disease/epidemiology , Huntington Disease/psychology , Huntington Disease/therapy , Male , Middle Aged , Netherlands , Surveys and QuestionnairesABSTRACT
OBJECTIVE: To evaluate the "Belastungsfragebogen Parkinson Angehörigen-kurzversion" (BELA-A-k), a questionnaire for measuring psychosocial problems and need for help in Parkinson's disease (PD) caregivers. METHODS: The "Belastungsfragebogen Parkinson Angehörigen-kurzversion" was translated into Dutch. It consists of 15 items with a "Bothered by" (Bb) and a "Need for Help" (NfH) score. The BELA-A-k was tested for cultural differences, relevance and feasibility in a pilot (n = 10). We determined the psychometric properties in a validation study (n = 50) and compared the BELA-A-k with the Sickness Impact Profile, the COOP/WONCA Functional Health Assessment Charts and the Loneliness Questionnaire (de Jong-Gierveld). All questionnaires were administered in person at home, in a prescribed order. RESULTS: The BELA-A-k was completed by 60 PD-caregivers. The internal-consistency reliability coefficients for the total "Bothered by" (0.90) and "Need for Help" (0.92) scales were excellent. The internal consistency of the subscales exceeded the 0.70 standard except for the "Bothered by" and "Need for Help" Social functioning scale (Bb = 0.62; NfH = 0.65) and the Partner-bonding/Family scale (NfH = 0.69). Almost all BELA-A-k subscales correlated highly (P < 0.001) with the corresponding scales of the standard quality of life indices. CONCLUSION: The BELA-A-k is a relevant, reliable and valid measure for assessing psychosocial problems and need for help of PD-caregivers.
Subject(s)
Caregivers/psychology , Mental Health , Parkinson Disease/therapy , Social Support , Surveys and Questionnaires , Aged , Aged, 80 and over , Cultural Characteristics , Female , Humans , Language , Loneliness , Male , Middle Aged , Netherlands , Psychometrics , Reproducibility of ResultsABSTRACT
Our objective was to evaluate the BELA-P-k, a questionnaire for measuring psychosocial problems and need for help in Parkinson's disease (PD) patients. The Belastungsfragebogen Parkinson kurzversion (BELA-P-k) was translated from German into Dutch. It consists of 19 items distributed over four subscales: achievement capability/physical symptoms, fear/emotional functioning, social functioning and partner-bonding/family, with a "Bothered by" (Bb) and a "Need for Help" (NfH) score. The BELA-P-k was tested for cultural differences, relevance, and feasibility in a pilot study (n = 10) and compared in a validation study (n = 54) with the Sickness Impact Profile, the COOP/WONCA Functional Health Assessment Charts and the Loneliness Questionnaire. All questionnaires were administered in person at home, in a prescribed order. The BELA-P-k was completed by 64 patients with PD. The internal-consistency reliability coefficients for the total Bb (0.90) and NfH (0.93) scales were excellent. The internal consistency of the subscales exceeded the 0.70 standard except for the "Bothered by partner-bonding/family scale" (0.61). Almost all BELA-P-k subscales correlated highly (P < 0.001) with the corresponding scales of the standard quality-of-life indices. There was no significant relationship between disease severity (Hoehn and Yahr) and the BELA-P-k. We conclude that the BELA-P-k is a relevant, reliable and valid measure for assessing psychosocial problems and need for help of PD patients.
