Survey in a Population of Sickle Cell Disease Patients to Evaluate the Transition Between the Queen Fabiola Children Hospital and the CHU Brugmann Hospital, and the Quality of the Hospital Care Within the CHU Brugmann Hospital.

NCT ID: NCT02608580

Last Updated: 2018-07-12

Basic Information

• Recruitment Status: COMPLETED
• Clinical Phase: NA
• Total Enrollment: 30 participants
• Study Classification: INTERVENTIONAL
• Study Start Date: 2013-12-01
• Study Completion Date: 2018-07-31

Brief Summary

Sickle cell disease is a genetic disease responsible for an abnormal hemoglobin.The anomaly has several consequences: a low hemoglobin rate (chronic anemia), plugs formed by red blood cells in blood vessels (extremely painful vaso-occlusive crises) and greater susceptibility to infections.

Patients with this disease should be monitored medically continuously from birth. At adulthood, they will pass from a pediatric medical care system to an adult medical care system.This transition can be experienced with more or less ease, depending on the organization within the pediatric and adult hospitals.

This questionnaire aims to assess the quality of the transition between pediatric and adult services.The investigators want to better estimate hospital work and improve the quality of care for this type of patients, throughout their entire medical history.

Detailed Description

Sickle cell disease is a genetic disease responsible for an abnormal hemoglobin. It particularly affects populations with an African ascent (300 000 African children are born every year with this genetic anomaly).

The anomaly has several consequences: a low hemoglobin rate (chronic anemia), plugs formed by red blood cells in blood vessels (extremely painful vaso-occlusive crises) and greater susceptibility to infections.

The severity of sickle cell disease is variable among children. Some develop frequent and serious complications, while others don't. A child with sickle cell disease is hospitalized about a week a year in average (for a painful crisis, infection or worsening of anemia).

Patients with this disease should be monitored medically continuously from birth. At adulthood, they will pass from a pediatric medical care system to an adult medical care system.This transition can be experienced with more or less ease, depending on the organization within the pediatric and adult hospitals.

This questionnaire aims to assess the quality of the transition between pediatric and adult services.The investigators want to better estimate hospital work and improve the quality of care for this type of patients throughout their entire medical history.

Conditions

Sickle Cell Disease

Study Design

• Allocation Method: NA
• Intervention Model: SINGLE_GROUP
• Primary Study Purpose: OTHER
• Blinding Strategy: NONE

Study Groups

Patients with sicke cell disease

Adult sickle cell disease patients will fill in a survey about the quality of their hospital care, in the transition period between the pediatric to an adult hospital care system.

Since filling in this survey is not part of the standard of care, this study has been defined as interventional.

Group Type: OTHER

Survey

Intervention Type: OTHER

Interventions

Survey

Intervention Type: OTHER

Eligibility Criteria

Inclusion Criteria

• Sickle cell disease patients, beeing admitted in the CHU Brugmann Hospital (Horta site) after having been followed in the Queen Fabiola Children Hospital.

Exclusion Criteria

• None

• Minimum Eligible Age: 16 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: No

Sponsors

Brugmann University Hospital

OTHER

Sponsor Role: lead

Responsible Party

Andre Efira

Head of Clinic

Responsibility Role: PRINCIPAL_INVESTIGATOR

Principal Investigators

Marie-Agnès Azerad, MD

Role: PRINCIPAL_INVESTIGATOR

CHU Brugmann

Locations

CHU Brugmann

Brussels, , Belgium

Countries

Belgium

Other Identifiers

CHUB-Transition

Identifier Type: -

Identifier Source: org_study_id