RESUMEN
The British James Lind Alliance (JLA) has developed a method to allow practitioners, patients and family members together to develop a research agenda for a disease or a form of treatment. In a 'priority setting partnership', they gradually establish a top-10 list of the most important unanswered research questions. Input from patients and their relatives is given the same weight when determining priorities as that from practitioners. More than 50 of these top-10 lists have been created so far, one of which was created in the Netherlands. The JLA method combines elements of the two very different methods currently prevailing in the Netherlands: the dialog model, developed by the VU and the 'health care evaluation agenda', developed by the Dutch Association of Medical Specialists. The JLA method is quite practicable and leads to new research questions. The biggest advantage is that it leads to a dialogue between creators and users of knowledge about what the relevant research questions are.
Asunto(s)
Investigación Biomédica/organización & administración , Atención a la Salud/organización & administración , Participación del Paciente , Familia , Humanos , Países BajosRESUMEN
OBJECTIVE: To study the relationships of muscle strength and maximal oxygen consumption (VO(2peak)) with Childhood Health Assessment Questionnaire (CHAQ) score, Childhood Myositis Assessment Score (CMAS) and Child Health Questionnaire [physical summary (CHQ-PhS) and psychosocial summary (CHQ-PsS)] scores in juvenile dermatomyositis. METHOD: Fifteen patients (age 5-14 yr) participated. CMAS, CHAQ, CHQ, muscle strength and VO(2peak) were measured. RESULTS: Correlations revealed significant relationships between CHAQ and (i) muscle strength (r=-0.72) and (ii) absolute VO(2peak) (r=-0.68); between CMAS and relative VO(2peak) (r=0.73); and between CHQ-PhS and (i) muscle strength (r=0.57) and (ii) relative VO(2peak) (r=0.58). Backward regression analysis showed that muscle strength was the best indicator of variation in CHAQ. Age and relative VO(2peak) were the best indicators for CMAS. Body mass and age were the best indicators for CHQ-PsS. Body mass and muscle strength were the best indicators for CHQ-PhS. CONCLUSION: CMAS, CHAQ and CHQ correlate with muscle strength and VO(2peak). CMAS, CHAQ and CHQ depend on different physical and physiological variables.