Last updated on February 2018

Determinants and Consequences of the Transition to Adulthood Among Adolescents With Haemophilia

Brief description of study

Severe haemophilia is a rare disease characterized by spontaneous bleedings from early childhood, which may lead to various complications especially in joints. Due to advances in medical care and more specifically in the development of prophylactic strategies by the application of clotting factor concentrates, life expectancy of persons with severe haemophilia has significantly increased over the last decades. This progress requires a long-term follow-up, including into adulthood. The adherence to a regular clinical follow-up and to a prophylactic treatment then depends on how successful patients' transition from childhood to adulthood has been as this process involves a transfer of responsibility from parents to patients concerning the management of their health. Beyond the issue of patients' adherence, a suboptimal transition may also impair quality of life and the entry into adulthood, especially at the social, emotional and professional levels. Only a few studies have been conducted to identify the specific needs and difficulties young persons with severe haemophilia experience during their transition from childhood to adulthood, and none of these studies has been carried out in France where the features of the health care system are very specific.

Therefore, this study aims to address the issue of transition into adulthood among young persons with severe haemophilia in France. This study will focus not only on the facilitators and barriers of the access to health care but also, from a more global perspective, on all the specific concerns and difficulties they may experience as they grow into adulthood which may impair their long-term health related quality of life as well as their personal empowerment. This study will also allow to identify some of the socio- cognitive, emotional, and familial determinants of a good transition into adulthood.

Detailed Study Description

The primary objective of this study is to assess the effect of psychosocial and organisational factors on the quality of the transition into adulthood among young persons with severe haemophilia, measured by the adherence to their clinical follow-up and to their prophylactic treatment.

The secondary objectives of this study are: (i) to identify the factors which facilitate or impair the transition into adulthood (socio-economic and demographic, psychosocial and cognitive, quality of life, clinical, organizational, therapeutic patient education), (ii) to assess specific factors involved in suboptimal transition process, by comparing a group of adolescents to a group of young adults, (iii) to assess the temporal evolution of these factors, (iv) to identify groups of patients (clusters) with specific profiles, and (v) to examine how young patients' expectations towards the health care system change during the transition into adulthood, to assess to what extent the current organization satisfies those expectations and promotes patients' acquisition of autonomy concerning their health, and to identify some ways to eventually improve that follow-up.

This study is an exploratory, observational, multicentric, transversal study aimed at describing the perceptions of adolescents (14-17 years old) with severe haemophilia to those of young adults (20-29 years old) regarding their expectations and their feelings about growing into adulthood. Every patient enrolled in the FranceCoag national cohort (cohort of French patients suffering from inherited deficiencies of coagulation proteins), suffering from severe haemophilia, aged from 14 to 17 years old or from 20 to 29 years old, will be offered to get enrolled in the TRANSHEMO study (expected number of participants: 160 adolescents and 407 young adults). The patients' participation in this study will not modify their medical or paramedical care. A multifocal approach which combines both quantitative and qualitative data collection will be proposed.

Clinical Study Identifier: NCT02866526

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