RESUMEN

PURPOSE: Desmoid tumors are a rare and complex disease characterized by a great diversity in its forms, localizations, and prognosis. Both the disease and the treatment can have a significant impact on quality of life in patients. Given the complexity of the disease and its rarity, the literature on patients' experience with the disease scarce. The purpose of this study is to investigate illness representations and subjective experience in participants affected with desmoid tumors. METHODS: Telephonic semi-directive interviews were used in French patients over 18 years, diagnosed with desmoid tumor. Data were analyzed through a general inductive method to identify emergent general themes in participants' discourse. RESULTS: Participants (8 women, 7 men) in this study were aged between 27 and 71. The analysis revealed eight major themes relative to representations of illness and treatment, live with the illness, the impact of illness on relationships with others, the illness and medical pathways, and the identity changes caused by the illness. The two most salient themes were illness and treatment representations and life with the illness. Those themes were chosen for this study. CONCLUSIONS: The results provide new insights on representation of and experience with desmoid tumors in patients. It brings arguments for the necessity of development wider systematic study to explore those variables in a larger sample during all the illness pathway. Indeed, this population meets particular issues appealing for the development of a specific psychosocial support.

Asunto(s)

Fibromatosis Agresiva , Investigación Cualitativa , Calidad de Vida , Humanos , Femenino , Masculino , Adulto , Persona de Mediana Edad , Fibromatosis Agresiva/terapia , Fibromatosis Agresiva/psicología , Anciano , Francia , Adaptación Psicológica , Entrevistas como Asunto

RESUMEN

This cross-sectional descriptive study aims to (1) describe the current digital technology (DT) use of people with chronic diseases (CD) by identifying different user profiles and (2) determine whether those profiles have specific characteristics regarding health-related variables and patient-doctor relationship quality (RQ). An online questionnaire assessing the uses of multiple types of DT (the Internet, mobile applications and connected devices) and several dimensions related to health and patient-doctor RQ was completed by 954 individuals living with CD. DT user groups were obtained by k-means cluster analysis and then compared using Mann-Whitney tests. The results show three profiles of DT users: (1) hyperconnected (8.9%, regular users of all DTs), (2) biconnected (19.1%, regular users of the Internet and mobile apps) and (3) hypoconnected (72%, casual users of the Internet only). The hyperconnected and biconnected groups are more empowered, more knowledgeable about their treatment and more committed to their doctors than the hypoconnected group. Nonadherence to treatment, health motivations, self-efficacy for health management and the trust dimension of the patient-doctor RQ did not differ between groups. We conclude by discussing the low use of the most recent technologies in the CD population, although these technologies seem to provide access to health information that empowers patients and leads to a better relationship with their doctors.

Asunto(s)

Aplicaciones Móviles , Enfermedad Crónica , Estudios Transversales , Humanos , Internet , Relaciones Médico-Paciente , Encuestas y Cuestionarios

RESUMEN

Context: Stroke has several consequences on survivors' daily life even for those who experience short-lasting neurological symptoms with no functional disability. Depression and anxiety are common psychological disorders occurring after a stroke. They affect long-term outcomes and quality of life but they are difficult to diagnose because of the neurobiological consequences of brain lesions. Current research priority is given to the improvement of the detection and prevention of those post-stroke psychological disorders. Although previous studies have brought promising perspectives, their designs based on retrospective tools involve some limits regarding their ecological validity. Ecological Momentary Assessment (EMA) is an alternative to conventional instruments that could be a key in research for understanding processes that underlined post-stroke depression and anxiety onset. We aim to evaluate the feasibility and validity of anxiety, depression and coping EMA for minor stroke patients. Methods: Patients hospitalized in an Intensive Neuro-vascular Care Unit between April 2016 and January 2017 for a minor stroke is involved in a study based on an EMA methodology. We use a smartphone application in order to assess anxiety and depression symptoms and coping strategies four times a day during 1 week at three different times after stroke (hospital discharge, 2 and 4 months). Participants' self-reports and clinician-rates of anxiety, depression and coping are collected simultaneously using conventional and standard instruments. Feasibility of the EMA method will be assessed considering the participation and compliance rate. Validity will be the assessed by comparing EMA and conventional self-report and clinician-rated measures. Discussion: We expect this study to contribute to the development of EMA using smartphone in minor stroke population. EMA method offers promising research perspective in the assessment and understanding of post-stroke psychological disorders. The development of EMA in stroke population could lead to clinical implications such as remotely psychological follow-ups during early supported discharge. Trial registration: European Clinical Trials Database Number 2014-A01937-40.