[Psychological impact of lockdown and the COVID-19 epidemic on haemodialysis patients and carers in France]. / Répercussions psychologiques du confinement et de l'épidémie à COVID-19 chez les patients et soignants en hémodialyse en France.

INTRODUCTION: The health crisis linked to the COVID-19 epidemic has required lockdown measures in France and changes in practices in dialysis centers. The objective was to assess the depressive and anxiety symptoms during lockdown in hemodialysis patients and their caregivers. METHODS: We sent, during lockdown period, between April and May 2020, self-questionnaires to voluntary subjects (patients and caregivers), treated by hemodialysis or who worked in hemodialysis in one of the 14 participating centers in France. We analyzed their perception of dialysis sessions (beneficial or worrying), their stress level (VAS rated from 0 to 10), their anxiety and depressive symptoms (Hospital anxiety and depression scale). Factors associated with stress, anxiety and depression were analyzed with multiple linear regression models. RESULTS: 669 patients and 325 caregivers agreed to participate. 70 % of participants found it beneficial to come to dialysis during confinement. The proportions of subjects with a stress level ≥ 6 linked to the epidemic, confinement, fear of contracting COVID-19 and fear of infecting a loved one were respectively 23.9%, 26.2%, 33.4% and 42%. 39.2% presented with certain (13.7%) or doubtful (19.2%) anxious symptoms. 21.2% presented a certain (7.9%) or doubtful (13.3%) depressive symptomatology. Age, gender, history of psychological disorders and perception of dialysis sessions were associated with levels of stress, anxiety and depression. CONCLUSION: During the lockdown period, in France, the majority of hemodialysis patients and caregivers found it beneficial to come to dialysis. One in three subjects had anxiety symptoms and one in five subjects had depressive symptoms.

Description of a multidisciplinary model of care in a French cohort of adult patients with tuberous sclerosis complex.

BACKGROUND: Tuberous 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. OBJECTIVES: Our study aimed to give a complete description of our TSC adult cohort and to evaluate the multidisciplinary and interdisciplinary management model. METHODS: Data 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. RESULTS: 90 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. CONCLUSION: We 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.

[What role can the psychologist have in patient education in nephrology? An out-center example]. / Quel rôle le psychologue peut-il avoir en éducation thérapeutique en néphrologie? Un exemple en auto-dialyse.

This article presents the experience of a psychologist in the development of a multidisciplinary and collective Therapeutic Patient Education program for dialysis patients in out-center (self-dialysis). The role of the psychologist is situated at different levels: construction of the program, animation and co-animation of interventions and evaluation of the program.

[Interest of a specific programme in patient education for dialysis in out-center patients]. / Intérêt d'un programme spécifique en éducation thérapeutique auprès de patients dialysés en hors-centre.

The development of therapeutic patient education for dialysis patients is recent and concerns mainly out-center patients. To our knowledge, only two papers centred on therapeutic education with out-center patients have been published. The particularities of this dialysis modality (unit close to the home, more autonomy, a nurse for six patients, organisation of unit, better quality of life and psychological status) highlight the interest to develop specific educational programs for patients treated in out-center sitting. The example of a program in Aquitaine (France) composed of mainly collective sessions (representations of the disease, dietetic recommendations, hygiene and protection of the vascular access, drugs compliance…) allows to propose several practical implications to initiate the development of specific programs in therapeutic education for out-center dialysis: educative sessions during the sessions of dialysis, group patients, multidisciplinary team, evaluation of the program from a medical and psychosocial point of view…

Family relations, mental health and adherence to nutritional guidelines in patients facing dialysis initiation.

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.

Assessment and effects of Therapeutic Patient Education for patients in hemodialysis: a systematic review.

OBJECTIVE: This review examined the impact of Therapeutic Patient Education (TPE) programs in hemodialysis and the assessment of these programs. REVIEW METHODS AND DATA SOURCES: A systematic review was performed. Bibliographical research was done with a database in the social and human sciences (PsychINFO, PsycARTICLES, SocINDEX with Full Text and the Psychology and Behavioural Sciences Collection). References were also searched in several reviews specialized in nephrology-dialysis and in patient education. Articles were classified according three different outcomes: (1) physiological outcomes, (2) psychosocial outcomes, (3) or combined criteria. RESULTS: 35 articles were selected. The majority dealt with purely physiological outcomes (18) and the minority concerned only psychosocial outcomes (4). Fifteen articles discussed both physiological and psychosocial outcomes, i.e. combined criteria. Beneficial effects were shown such as improvements in knowledge, adherence and quality of life. Most educational interventions were performed by nurses. CONCLUSION: This systematic review found that educational programs in dialysis have become more numerous and efficient, with a prevalence of assessment based on physiological outcomes. TPE is a global management method based on both the physiological and the psychological well-being of the patient. Studies that take into account both physiological and psychosocial variables are very useful for understanding the effects of TPE programs on dialysis patients. The review shows that nurses play an important role in TPE and that they require varied communicational, educational, animation and assessment skills. These positive effects are encouraging for nurses to stimulate the development of TPE programs for dialysis patients in their multidisciplinary teams. The nurse's role is important for the commitment of each health caregiver (nurse, physician, dietician, pharmacist, psychologist, etc.) for the global management of patients in the TPE process.