RESUMEN
Purpose: To document the nutritional risk in adults with oculopharyngeal muscular dystrophy (OPMD) and its association with oropharyngeal dysphagia.Methods: In this cross-sectional study, 33 adults with molecular confirmation of OPMD between 50 and 75 years old were recruited from the registry of a university-affiliated neuromuscular clinic. Nutritional risk was assessed with the French version of Seniors in the Community: Risk Evaluation for Eating and Nutrition II (SCREEN II), whereas the severity of dysphagia was assessed using the French-Canadian version of the Sydney Swallow Questionnaire. Anthropometric measurements were performed with standardized procedures.Results: SCREEN II scores showed high nutritional risk for 81.8% of OPMD participants with 6 factors contributing to nutritional risk in at least 50% of the sample. Pearson's correlational analysis showed a significant moderate relationship between dysphagia and nutritional risk (r = -0.470; P = 0.006).Conclusion: To our knowledge, this study is the first to investigate the nutritional risk of adults with OPMD. Our results indicate that individuals with OPMD may be at high nutritional risk mostly associated with swallowing difficulty, in the absence of a low body mass index. The present study highlights the need for dietary counseling in OPMD.
Asunto(s)
Trastornos de Deglución , Distrofia Muscular Oculofaríngea , Adulto , Anciano , Canadá , Estudios Transversales , Trastornos de Deglución/complicaciones , Humanos , Persona de Mediana Edad , Distrofia Muscular Oculofaríngea/complicaciones , Encuestas y CuestionariosRESUMEN
BACKGROUND: Multimorbidity challenges the health-care system and requires innovative approaches. In 2015, a 4-month patient-centred interdisciplinary pragmatic intervention was implemented in primary care with the aim of supporting self-management for patients with multimorbidity. OBJECTIVE: To explore the perceptions and experiences of health-care professionals, patients and their caregivers with a 4-month patient-centred interdisciplinary pragmatic intervention in primary care. DESIGN: A descriptive, qualitative study using semi-structured interviews was conducted. SETTING AND PARTICIPANTS: A purposive sample of 30 participants was recruited from seven family medicine groups including patients, caregivers and health-care professionals (HCPs). Interviews were analysed using Thorne's interpretive description approach. RESULTS: Findings were grouped into the benefits and challenges of participating in the intervention. The programme allowed patients to adopt realistic and adapted objectives; to customize interventions to the patient's reality; and to help patients gain confidence, improve their knowledge, skills and motivation to manage their condition. Interprofessional collaboration eased the exchange of information via team meetings and electronic medical records. Challenges were related to collaboration, communication, coordination of work and integration of newly relocated HCPs mainly due to part-time assignments and staff turnover. HCPs part-time schedules limited their availability and hindered patients' follow-up. DISCUSSION AND CONCLUSION: This intervention was useful and rewarding from the HCPs, patients and caregivers' perspective. However, to ensure the success of this complex interdisciplinary intervention, implementers and managers should anticipate organizational barriers such as availability and time management of relocated HCPs.
Asunto(s)
Cuidadores , Multimorbilidad , Personal de Salud , Humanos , Atención Primaria de Salud , Investigación CualitativaRESUMEN
OBJECTIVE: A patient-centred care interdisciplinary pragmatic intervention to support self-management for patients with multimorbidity was implemented in one region of Quebec, Canada. This embedded study aimed to evaluate the process of implementation. DESIGN: A descriptive qualitative study was conducted in 2016-2017 using semistructured individual interviews. The Consolidated Framework for Implementation Research (CFIR) was used to guide the data coding, analysis and reporting of the findings. SETTING: The study took place in seven Family Medicine Groups in one region (Saguenay-Lac-Saint-Jean) of Quebec, Canada. PARTICIPANTS: Ten managers (including two family physicians) and 19 healthcare professionals (HCPs), nurses, kinesiologists, nutritionists and a respiratory therapist, were interviewed. RESULTS: Many key elements within the five CFIR domains were identified as impacting the implementation of the intervention : (1) intervention characteristics-evidence strength and quality, design quality and packaging, relative advantage and complexity; (2) outer setting-patients' needs and resources, external policies and incentives; (3) inner setting-structural characteristics, networks and communication, culture, compatibility, readiness for implementation and leadership engagement; (4) characteristics of the managers and HCPs-knowledge and belief about the intervention; (5) process-planning, opinion leaders, formally appointed internal implementation leaders, reflecting and evaluating. CONCLUSION: This study revealed the organisational and contextual aspects of the implementation based on different and complementary perspectives. With the growing demand for interdisciplinary teams in primary care, we believe that our insights will be helpful for practices, researchers, and policymakers interested in the implementation of disease prevention and management programmes for people with multiple chronic conditions in primary care. TRIAL REGISTRATION NUMBER: NCT02789800.