sickle cell disease, group medical appointments, self-efficacy, adherence. sikkelcelziekte, groepsconsulten, zelfredzaamheid, therapietrouw.
Conditions
Interventions
A group medical appointment is a novel form of ou-patient contact incorporating an individual appointment within a group consultation, in the presence of fellow patients and other medical professional
Sponsors
Erasmus Medical Centre- Sophia Children's Hospital (Sickle cell centre).
Eligibility
Inclusion criteria
Inclusion criteria: - Patients of all ages and parents of children with homozygous or compound heterozygous sickle cell disease. - Informed (parental) consent.
Exclusion criteria
Exclusion criteria: - Patients and parents visiting the out-patient clinic for the first time. - Patients not able to communicate or read adequately in Dutch. - Patients with hearing or behavioral problems. - Withdrawal of (parental) informed consent.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 1. Self-efficacy as measured by a validated questionnaire. 2. Adherence to prescribed treatment by the (pediatric) hematologist and measured with two validated self-report questionnaires, out-patient clinic attendance and blood values associated with adherence to medication. | — |
Secondary
| Measure | Time frame |
|---|---|
| 1. Quality of life, measured with validated generic questionnaires. 2. Medical contacts for sickle cell- related symptoms and complications. 3. Satisfaction with the treating physician and sickle cell nurse. 4. Economical analysis of group medical appointments as compared to standard treatment, with respect to health- related quality of life. | — |
Contacts
Public ContactM.H. Cnossen
Pediatric hematologist Erasmus Medical Centre - Sophia Children's Hospital Postbus 2060
Outcome results
None listed