Sickle cell disease: a national survey to better understand patients’ needs
The NEED project (Need Examination, Evaluation and Dissemination), supported by the Belgian Health Care Knowledge Centre (KCE), is launching a national survey for people living with sickle cell disease and their families.
Giving patients a voice
Participer à l’enquête
The aim of this study is simple: to better identify the needs that are still insufficiently addressed in healthcare delivery and in the development of new treatments.
Researchers would like to hear from people living with sickle cell disease in order to gain a better understanding of the challenges they face in their daily lives, as well as their expectations of the healthcare system.
Beyond medical aspects, the survey also explores the impact of the disease on:
- quality of life;
- education and schooling;
- employment;
- social relationships;
- psychological wellbeing;
- access to healthcare and support services.
Why take part?
The results will help provide a clearer picture of patients’ needs and guide future priorities in research, healthcare organisation and health policy.
Every response will help ensure that the voices of people living with sickle cell disease are heard and that the challenges they face every day are better recognised.
Who can take part?
The survey is open to:
- adults living with sickle cell disease;
- parents of children aged 12 years or older living with sickle cell disease;
- relatives or carers of an adult patient who is unable to complete the questionnaire themselves.
Participants must live in Belgium and speak either French or Dutch.
How can I take part?
Participation involves completing an online questionnaire, which takes approximately 40 minutes. You may pause at any time and return later to complete it.
Participants may also volunteer for an individual interview with a researcher.
Take part in the survey:https://tinyurl.com/KCE-drepa