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PURPOSE: Currently, nearly 90% of patients with congenital heart disease (CHD) reach adulthood in relatively good health. Structured transition programs have emerged to support adolescents and young adults in transitioning to adult care structures, improve their autonomy, and limit healthcare ruptures. The TRANSITION-CHD randomized controlled trial aimed to assess the impact of a transition program on health-related quality of life (HRQoL) in adolescents and young adults with CHD. METHODS: From January 2017 to February 2020, 200 subjects with a CHD, aged 13-25 years, were enrolled in a prospective, controlled, multicenter study and randomized in two balanced groups (transition program vs. standard of care). The primary outcome was the change in PedsQL self-reported HRQoL score between baseline and 12-month follow-up, using an intention-to-treat analysis. The secondary outcomes were the change in disease knowledge, physical health (cardiopulmonary fitness, physical activity), and mental health (anxiety, depression). RESULTS: The change in HRQoL differed significantly between the transition group and the control group (mean difference = 3.03, 95% confidence interval (CI) = [0.08; 5.98]; p = .044; effect size = 0.30), in favor of the intervention group. A significant increase was also observed in the self-reported psychosocial HRQoL (mean difference = 3.33, 95% CI = [0.01; 6.64]; p = .049; effect size = 0.29), in the proxy-reported physical HRQoL (mean difference = 9.18, 95% CI = [1.86; 16.51]; p = .015; effect size = 0.53), and in disease knowledge (mean difference = 3.13, 95% CI = [1.54; 4.72]; p < .001; effect size = 0.64). DISCUSSION: The TRANSITION-CHD program improved HRQoL and disease knowledge in adolescents and young adults with CHD, supporting the generalization and systematization of similar preventive interventions in pediatric and congenital cardiology.
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Cardiopatías Congénitas , Calidad de Vida , Transición a la Atención de Adultos , Humanos , Cardiopatías Congénitas/psicología , Cardiopatías Congénitas/terapia , Adolescente , Femenino , Masculino , Adulto Joven , Estudios Prospectivos , AdultoRESUMEN
INTRODUCTION: The Chronic Disease Self-Management Programme (CDSMP) has resulted in improved health outcomes for patients. However, research has focused mainly on those with chronic conditions and has not extensively explored prevention programmes targeting individuals with specific vulnerability profiles. AIM: This study aimed to understand the effects of the CDSMP on the lived experience of vulnerable patients included in the EFFICHRONIC project in France, based on their needs and expectations before and after participation. METHODS: We conducted a qualitative phenomenological semio-pragmatic study based on 37 in-depth interviews with 20 patients (20 before/17 after CDSMP). RESULTS: By transforming existential dimensions (identity, relationship with others and bodily experience), chronic illness generates new needs in the vulnerable person. By resonating with the expectations and needs of participants, the CDSMP induces motivation and a sense of belonging to a community of peers. It has enabled the participants to become actors of their own health until empowerment. Although some limitations are reported, the programme has awakened a desire in the participants to take better care of their health and to develop personal skills with, for some, a desire to become involved in health education. CONCLUSION: Our phenomenological approach highlighted the resonance between the programme (its design and implementation) and the lived experience of patients, as an effective element of empowerment. This necessitates training the facilitators to elicit the lived experience of patients. Furthermore, as a patient-centred approach is required, the facilitators need to learn how to adapt the design of the programme to the singularity of the patient. PATIENT OR PUBLIC CONTRIBUTION: Patients provided the data that were collected through in-depth interviews, and their experiences before and after the programme were analysed.
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Automanejo , Enfermedad Crónica , Francia , Humanos , Poder Psicológico , Investigación CualitativaRESUMEN
BACKGROUND: Despite a broad consensus and recommendations, numerous international reports or studies have shown the difficulties of implementing palliative care within healthcare services. The objective of this study was to understand the palliative approach of registered nurses in hospital medical and surgical care units and their use of mobile palliative care teams. METHODS: Qualitative study using individual in depth semi-structured interviews and focus group of registered nurses. Data were analyzed using a semiopragmatic phenomenological analysis. Expert nurses of mobile palliative care team carried out this study. 20 registered nurses from three different hospitals in France agreed to participate. RESULTS: Nurses recognize their role as being witnesses to the patient's experience through their constant presence. This is in line with their professional values and gives them an "alert role" that can anticipate a patient-centered palliative approach. The physician's positioning on palliative care plays a key role in its implementation. The lack of recognition of the individual role of the nurse leads to a questioning of her/his professional values, causing inappropriate behavior and distress. According to nurses, "rethinking care within a team environment" allows for the anticipation of a patient-centered palliative approach. Mobile Palliative Care Team highlights the major role of physicians-nurses "balance" while providing personal and professional support. CONCLUSIONS: The Physician's positioning and attitude toward palliative approach sets the tone for its early implementation and determines the behavior of different staff members within healthcare service. "Recognition at work", specifically "recognition of the individual role of nurse" is an essential concept for understanding what causes the delay in the implementation of a palliative approach. Interprofessional training (physicians and nurses) could optimize sharing expertise. Registered nurses consider MPCT as a "facilitating intermediary" within the healthcare service improving communication. Restoring a balance in sharing care and decision between physicians and other caregivers lead care teams to an anticipated and patient-centered palliative approach according to guidelines.
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Unidades Móviles de Salud/normas , Enfermeras y Enfermeros/psicología , Cuidados Paliativos/psicología , Cuidados Paliativos/normas , Habitaciones de Pacientes/estadística & datos numéricos , Adulto , Actitud del Personal de Salud , Femenino , Francia , Humanos , Masculino , Persona de Mediana Edad , Unidades Móviles de Salud/estadística & datos numéricos , Cuidados Paliativos/métodos , Habitaciones de Pacientes/organización & administración , Investigación CualitativaRESUMEN
OBJECTIVE: Provide up-to-date detection rates for common mental disorders (CMD) and examine patient service-use since the Preferred Doctor scheme was introduced to France in 2005, with patients encouraged to register with and consult a family practitioner (FP) of their choice. METHODS: Study of 1133 consecutive patients consulting 38 FPs in the Montpellier region, replicating a study performed before the scheme. Patients in the waiting room completed the self-report Patient Health Questionnaire (PHQ) and Client Service-Receipt Inventory with questions on registration with a Preferred Doctor and doctor-shopping. CMD was defined as reaching PHQ criteria for depression, somatoform, panic or anxiety disorder. For each patient, FPs completed a questionnaire capturing psychiatric caseness. RESULTS: 81.2% of patients were seeing their Preferred Doctor on the survey-day. Of those with a CMD, 52.6% were detected by the FP. This increased with CMD severity and comorbidity. Detected cases were more likely to be consulting their Preferred Doctor (84.7% versus 79.4% for non-detected cases, p = 0.05) rather than another FP. They declared more visits to psychiatrists (17.2% versus 6.7%, p = 0.002). There was no association with consultation frequency or doctor-shopping, which both declined between the two studies. CONCLUSION: The CMD detection rate is relatively high, with no increase compared to our previous study, despite a decline in doctor-shopping. An explanation is the same high proportion of patients visiting their usual FP on the survey-day at both periods, suggesting a limited impact of the scheme on care continuity. FP action taken highlights the importance of improving detection for providing care to patients with CMDs.
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Medicina Familiar y Comunitaria/estadística & datos numéricos , Médicos Generales/estadística & datos numéricos , Servicios de Salud/estadística & datos numéricos , Trastornos Mentales/epidemiología , Adulto , Anciano , Femenino , Francia/epidemiología , Humanos , Masculino , Trastornos Mentales/diagnóstico , Trastornos Mentales/terapia , Persona de Mediana Edad , Encuestas y CuestionariosRESUMEN
BACKGROUND: the analysis of access to diagnosis and care pathway for dementia patients shows that the disease is not considered as a priority for the general practitioner (GP). Different studies have point out under diagnosis of dementia. PURPOSE: the purpose of this qualitative study was to document the determinants of the diagnosis and management of dementia by GP. METHODS: recruitment of GPs (n = 12) was made from incident cases of dementia who were identified during the follow-up of subject enrolled in the 3 Cities cohort study. A semi-structured interview was conducted with an interview guide focused on the experience of the doctors. A phenomenological and pragmatic analysis, taking into account all the linguistic and extra linguistic evidence contained in the transcript was conducted. RESULTS: several emerging categories have been described: the doctors believe that the management of Alzheimer's disease is a public health problem and not an individual, the positioning of the GP in the care system is central. Determinants that influence the management are the identity of the physician, the impression of a fuzzy nosology, the finding of a therapeutic ineffectiveness, the priority given to severe co-morbidities and the workload of the general practitioner. However, the ordering of these categories according to the pragmatic phenomenological approach showed that the identity of the doctor, professional and personal, is at the origin of behavioral variability in their medical care. CONCLUSION: in a context of increased workload, the GP favors the assumption of comorbidities in the elderly given fuzzy nosology of dementia and uncertainty about the therapeutic efficacy. The phenomenological approach allows understanding that the human identity of the doctor, personal and professional identity, is the major factor that influence its care attitude for demented patients.