Evaluation of Impact of Disease on Quality of Life, Education and Socio-professional Integration of Adults and Parents of Children Living with Sickle- Cell Disease in France

Argo Sante1,088 enrolled

Overview

Sickle cell disease (SCD) is the most common genetic disease in France. Its consequences on patient's life-course and quality of life need to be precisely identified among French patients and their family to be able to improve patients care according to their specific needs. The aim of the study is to accurately describe the impact of SCD on quality of life of patients living in France, or their family (for minor patients). The consequences of the disease on professional life, education and material condition of patients or their parents will be described by the patients themselves.

This is a retrospective study. Patients or parents of minor patients living in France and suffering from SCD will be informed about the study and enrolled during their usual follow-up, or by patients' associations. They will be asked to answer an anonymous survey online relating to their whole life-course with SCD and exploring different aspects of the consequences of the disease on their life. It contains 4 different sections: 1. socio-demographic questions to establish a respondent profile 2. health status of the respondent to establish the severity of the disease 3. education, professional life, material and economic situation 4. quality of life through MOS SF-36 questionnaire This is a one-shot survey, which will take approximatively 20 to 30 minutes to answer by the respondent.

Study Type

OBSERVATIONAL

Enrollment

1,088

Conditions

Sickle-cell Disease (SCD)

Eligibility

Sex: ALLMin age: 18 Years

Medical Language ↔ Plain English

Inclusion Criteria: * 18 years or older * Diagnosed with SCD or parent of a minor child diagnosed with SCD * Able to speak and understand French * Willing to participate to the study Exclusion Criteria: * Person having serious difficulties to read or speak French, unable to answer the questions * Person suffering from other chronic disease which could bias the representation they have about SCD * Patient cured with a bone marrow transplant * Patient with mental disorder preventing the patient to understand the study

Outcomes

Primary Outcomes

Describe the disease impact on quality of life through description of professional life, education and material condition of patients, or their parents (for minor patients), suffering from sickle-cell disease and living in France.

Measure of mutual impact of health status on patients educational and socio-professional life course.

Time frame: Once at enrollment

Secondary Outcomes

- Study the factors of heterogeneity of patients' profiles - Explore the causal relation between health status and employment conditions, education, material and economic situation - Assess the patients' needs in care and socio-economic support

The perceived impact of disease on education will be confirmed by: * Type of education adjustment introduced * The level and the cause of leaving full-time education * The intensity of school absences * The feeling of discrimination on school time The impact of disease on professional life will be measured by: * The professional status * The sick leaves * The feeling of discrimination at work * The compatibility of work conditions with the disease The impact of disease on material and economic situation will be assessed by: * The income level * The patient cost sharing * The remaining balance * The recognition of handicap * The recognition of disability The quality of life score of respondents: \- Medical outcome study short form 36 item health survey (MOS SF-36)