a study aimed to assess the needs of subjects with sickle cell disease and healthcare professionals managing sickle cell disease patients in selected nigerian centres

Conditions: Sickle Cell Disease

Summary: this pilot research is aimed to assess the needs of patients and health workers involved in sickle cell disease (scd) management in nigeria. to achieve this, a questionnaire will be administered to scd patients or parents of children affected by scd. another questionnaire will be administered to doctors and nurses working with scd patients. a focus group discussion with patients/parents willing to participate will be also scheduled. participants from the following centres will be involved: barau dikko teaching hospital kaduna state university, ahmadu bello university teaching hospital zaria, national hospital abuja, federal medical centre katsina. data will be qualitatively and quantitatively analysed and presented as aggregated data. consent from all the study participants will be sought. questionnaires will be coded and no personal data will be disclosed to authorised third parties.

the primary objective of this study is to understand the needs of scd patients and health workers involved in scd management, with particular reference to the disease management in the clinical centre. this is a descriptive, mixed method prospective questionnaire-based study. the study is intended as a pilot experience to verify the feasibility of the action through a structured survey. two questionnaires have been developed: one will be administered to 30 scd patients or parents/legally designated representatives of children affected by scd and 30 professionals working with scd patients (mainly doctors and nurses) in four clinical centres in nigeria for a total of 120 patients and 120 health workers. a focus group discussion will be run with the scd patients/parents. following the pilot study, a wider survey will be launched involve patients, parents and healthcare professionals in the whole country and in other centres involved in the project. data for this study will be collected using triangulation methods. a simple random and purposive sampling techniques will be used to select respondents for the study. the collected data for this study will be presented and analysed using spss and thematic analysis. the study will be conducted in four centres in nigeria: barau dikko teaching hospital kaduna state university (bdth), ahmadu bello university teaching hospital zaria (abuth), national hospital abuja (nha), and federal medical centre katsina (fmc). the study will be performed in the framework of the "african research and innovative initiative for sickle cell education: improving research capacity for service improvement" project (ga 824021 - arise - h2020-msca-rise-2018). arise is the eu (horizon 2020) 4-year funded project between european, african, us and lebanon institutions for research staff exchanges, started on 1st of january 2019. fondazione per la ricerca farmacologica gianni benzi onlus coordinates the arise project.

Eligibility criteria:
the following inclusion criteria apply for patients/parents: * aged ≥ 18 * have scd diagnosis or having a child with a scd diagnosis * attending the centre from at least 6 months * nigerian nationality * informed consent signed the following inclusion criteria will apply for healthcare professionals: * working in a scd clinic * at least 5 years of experience with scd patients * informed consent signed the following exclusion criteria apply for all participants: * informed consent form withdrawal * illiterate subjects * any psychiatric conditions impairing the participation in this study.

Keywords: sickle cell disease healthcare professionals' needs patients'needs questionnaires