Sickle cell disease Haematological Disorders
Conditions
Interventions
Delphi reflection cycles on the feasibility of sickle cell community treatment hubs.
This is an exploratory study to explore potential functions, operation, feasibility, acceptability and potential m
Sponsors
Liverpool School of Tropical Medicine
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: 1. All participants must willfully consent to participate. 2. Adolescents living with SCD 2.1. Aged 15 and older 2.2. Parent/caregiver has provided informed consent 2.3. Adolescent has given assent to participate 3. Carers of people living with SCD 3.1. Aged 18 and older 3.2. Caring for at least one person with SCD 4. SCD healthcare providers 4.1. Aged 18 and older 4.2. Playing a role in supporting clinical management of patients with SCD, including in hospital and GP practices 5. Stakeholders with potential to input to the functioning of hubs 5.1. Aged 18 and older 5.2. Representatives from social services, Citizens Advice and councils 5.3. Academics (including clinical educators) 6. Working with community-based or non-governmental organisations that support people living with SCD and their families
Exclusion criteria
Exclusion criteria: Not meeting the key inclusion criteria.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| A 'test-ready' scalable intervention, in the form of community sickle cell disease hubs, with recommendations for potential locations and evaluation metrics ready to be trialled in a subsequent study. This will be developed from research outputs, including a scoping review [at month 5]; a cohort of trained and experienced community research champions with shareable training resources relevant for sickle cell disease [at month 6]; and a collaboratively refined theory of change [at month 14], to underpin future testing of the hubs developed from the Delphi framework. | — |
Secondary
| Measure | Time frame |
|---|---|
| There are no secondary outcome measures | — |
Countries
England, United Kingdom
Contacts
Public ContactSusie Crossman
Outcome results
None listed