RESUMEN
BACKGROUND: Living with a chronic disease often means experiencing chronic treatments and regular multidisciplinary monitoring as well as a profound life-changing experience which may impact all aspects of a patients life. The patient experience of chronic disease is frequently assessed by patient reported measures (PRMs) which incorporate patients perspectives to better understand how illness, treatment and care impact the entirety of a patient's life. The purpose of this review was to collect and review different kinds of available PRM instruments validated for chronic patients, to produce an inventory of explored concepts in these questionnaires and to identify and classify all dimensions assessing chronic patients experience. METHODS: A systematic review of PRM instruments validated for chronic patients was conducted from three databases (Medline, the Cochrane library, and Psycinfo). Articles were selected after a double reading and questionnaires were classified according to their targeted concept. Then, all dimensions of the questionnaires were clustered into different categories. RESULTS: 107 primary validation studies of PRM questionnaires were selected. Five kinds of instruments were recorded: 1) Questionnaires assessing health related quality of life or quality of life; 2) Instruments focusing on symptoms and functional status; 3) Instruments exploring patients' feelings and attitude about illness; 4) Questionnaires related to patients' experience of treatment or healthcare; 5) Instruments assessing patients attitudes about treatment or healthcare. Twelve categories of dimensions were obtained from these instruments. CONCLUSIONS: This review provided an overview of some of the dimensions used to explore chronic patient experience. A large PRM diversity exists and none of the reviewed and selected questionnaires covered all identified categories of dimensions of patient experience of chronic disease. Furthermore, the definition of explored concepts varies widely among researchers and complex concepts often lack a clear definition in the reviewed articles. Before attempting to measure chronic patient experience, researchers should construct appropriate instruments focusing on well-defined concepts and dimensions encompassing patient's personal experience, attitude and adaptation to illness, treatment or healthcare.
Asunto(s)
Enfermedad Crónica/psicología , Calidad de Vida , Actitud Frente a la Salud , Femenino , Humanos , Masculino , Encuestas y Cuestionarios/normas , Estudios de Validación como AsuntoRESUMEN
OBJECTIVE: Anorexia nervosa (AN) is a complex disease in which obsessive thoughts about body image, shape, or weight are expressed. The intensity of these concerns varies among individuals, and only a few studies have focused on their impact on patients' clinical course when patients are treated on an outpatient basis. Our study aimed to determine whether marked body concerns at inclusion were predictive of the one-year follow-up. METHOD: Participants (N = 72) were women seeking treatment for AN in a specialized unit for eating disorder management. All participants were assessed at inclusion and at the 1-year follow-up. Clinical outcome was assessed using the Morgan & Russel Outcome Average Score (MROAS), and body concerns were assessed using the Body Shape Questionnaires (BSQ). RESULTS: Marked body concerns (BSQ score >140) at inclusion were associated with a poorer outcome at the 12-month follow-up (lower MROAS "total score"). Other characteristics at inclusion that were predictive of a poorer outcome at 12 months were as follows: higher severity of ED at inclusion, longer hospitalization during follow-up, and experiencing a lower impact of the illness on school/work life. DISCUSSION: The results confirmed the importance of a multifocal treatment that should address body concerns and motivation to change. Our results also highlighted the necessity of promoting the maintenance of school/work during the treatment course.
Asunto(s)
Anorexia Nerviosa , Trastornos de Alimentación y de la Ingestión de Alimentos , Anorexia Nerviosa/terapia , Imagen Corporal , Femenino , Estudios de Seguimiento , Humanos , SomatotiposRESUMEN
Background: Nearly 3% of the population is treated by antipsychotic. The aim of this study was to assess the conformity of monitoring with guidelines to prevent Metabolic Syndrome. Research design and method: The analysis was conducted using SNIIRAM data (2013 to 2017) on a cohort of patients who received at least eight antipsychotic dispensings in the first year. Glucose and lipid testings were recorded according to refunds at initiation [between -3 and 0.5 months], 3 months [between 2 and 4 months], and 12 months [between 11 and 13 months] after, and assuming optimal testing during hospitalization (exclusive of psychiatric unit). Descriptive and comparative analysis, «chi-squared test or Student's t-test¼, were performed as well as multivariate analysis with logistic regression. Results: 18 760 patients were selected, 14 421 were still alive and monitored at the end of the follow up. In the recommended period, only 2.89% of patients had three complete testings and 50.6% one or two complete testings Non-optimal testing was more likely to occur in children and adults (vs elderly), in patients with less than 3 prescribers, and with universal medical coverage. Conclusion: Monitoring remains dramatically insufficient. New actions involving patients, practitioners, and authorities are warranted.
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Antipsicóticos/administración & dosificación , Glucemia/análisis , Monitoreo de Drogas/métodos , Lípidos/sangre , Adolescente , Adulto , Factores de Edad , Anciano , Antipsicóticos/efectos adversos , Niño , Preescolar , Estudios de Cohortes , Bases de Datos Factuales , Femenino , Estudios de Seguimiento , Francia , Hospitalización , Humanos , Lactante , Seguro de Salud , Masculino , Persona de Mediana Edad , Defensa del Paciente , Guías de Práctica Clínica como Asunto , Adulto JovenRESUMEN
Long-term survivors after allogeneic hematopoietic stem cell transplantation (allo-HSCT) are at high risk for treatment-related adverse events, that may worsen physical capacity and may induce fatigue and disability. The aims of this prospective study were to evaluate exercise capacity in allotransplant survivors and its relationship with fatigue and disability. Patient-reported outcomes and exercise capacity were evaluated in 71 non-relapse patients 1 year after allo-HSCT, using validated questionnaires, cardiopulmonary exercise testing (CPET) with measure of peak oxygen uptake (peakVO2) and deconditioning, pulmonary function testing, echocardiography and 6-min walk test. A high proportion (75.4%) of allo-HSCT survivors showed abnormal cardiopulmonary exercise testing parameters as compared to predicted normal values, including 49.3% patients who exhibited moderate to severe impairment in exercise capacity and 37.7% patients with physical deconditioning. PeakVO2 values were not accurately predicted by 6-min walk distances (r = 0.53). Disability and fatigue were strongly associated with decreased peakVO2 values (p = 0.002 and p = 0.008, respectively). Exercise capacity was reduced in most allo-HSCT long-term survivors. Because reduced exercise capacity was associated with fatigue, disability and a decrease in quality of life, cardiopulmonary exercise testing should be performed in every patient who reports fatigue and disability.