No abstract

This study investigated the effect of family relations on patients' adjustment to dialysis. The two main aims were to develop a family typology, and to explore the influence of family profile on the patient's anxiety, depression and adherence to nutritional guidelines. The sample consisted of 120 patients (mean age 63 years; 67.5% of men). They completed several measures 1, 6 and 12 months after dialysis initiation. The scales used were the Family Relationship Index and the Hospital Anxiety and Depression Scale. Perceived adherence to nutritional guidelines was assessed using two visual analogical scales. Results showed that family relations remained stable over time. Cluster analysis yielded three family profiles, which were named conflict, communicative and supportive families. Patients belonging to conflict families perceived themselves as less adhering to nutritional guidelines. For these patients, anxiety and depressive moods increased significantly over time, whereas mental health remained stable over time for communicative and supportive families. This research underlines that family relations are essential in global consideration of the care of patients treated by dialysis. Conflict families seem especially at risk. They should be identified early to help them adapt to this stressful treatment.

BackgroundTuberous sclerosis complex (TSC) is a rare autosomal dominant genetic disorder. Due to the various manifestations of TSC and their potential complications, a multidisciplinary care approach is recommended by consensus guidelines.ObjectivesOur study aimed to give a complete description of our TSC adult cohort and to evaluate the multidisciplinary and interdisciplinary management model.MethodsData on each adult patient diagnosed with TSC, including disease manifestations, interventions and outcomes, were collected at baseline and updated annually. A multidisciplinary TSC approach with all the recommended explorations was carried out annually.Results90 patients were enrolled in Centre Hospitalier Universitaire de Bordeaux, between January 2000 and September 2018. Median age of patients at inclusion was 37 years (range, 27–47) and 20 years old at diagnosis of TSC. Regarding the occurrence of TSC manifestations, 97% of the patients had cutaneous lesions, 89% had neurological manifestations, 83% had renal manifestations and 100% had dental lesions with pits. More than half the patients had sclerotic bone lesions (68%), TSC-associated neuropsychiatric disorders (64%) and lymphangioleiomyomatosis (59%). A TSC multidisciplinary approach was developed including a global follow-up and an evaluation of TSC targeting organs, according to the recommendations. A satisfaction survey revealed global and entire satisfaction of patients with TSC.ConclusionWe obtained an accurate description of a cohort of adult patients with TSC. Our multidisciplinary approach model allowed us to provide optimal management of patients with TSC with a high level of patient satisfaction.

No abstract

No abstract