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
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|ClinicalTrials.gov Identifier: NCT04505969|
Recruitment Status : Recruiting
First Posted : August 10, 2020
Last Update Posted : November 17, 2020
|Condition or disease||Intervention/treatment|
|Sickle Cell Disease||Other: Questionnaire to assess needs|
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.
|Study Type :||Observational|
|Estimated Enrollment :||240 participants|
|Official Title:||Pilot Study to Assess Patients' and Health Workers' Needs Involved in Sickle Cell Disease Management|
|Actual Study Start Date :||September 15, 2020|
|Actual Primary Completion Date :||November 9, 2020|
|Estimated Study Completion Date :||December 30, 2020|
|SCD patients and healthcare professionals||
Other: Questionnaire to assess needs
Two questionnaires have been developed to assess the specific needs of healthcare professionals working with SCD patients and of SCD patients or parents of children with SCD
- Satisfaction of patients and healthcare professionals in terms of Sickle Cell Disease management [ Time Frame: Single-point assessment, at the enrolment ]The % of interviewed patients and healthcare professionals judging as satisfactory the SCD management in their centre. This will be measured through a questionnaire developed in the framework of the ARISE project and tailored on Nigerian framework.
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT04505969
|Contact: Abubakar Abdulkareem, MScfirstname.lastname@example.org|
|National Hospital Abuja||Not yet recruiting|
|Contact: Halima Aliyu|
|Barau Dikko Teaching Hospital, Kaduna State University||Not yet recruiting|
|Contact: Abubakar Abdulkareem|
|Federal Medical Centre Katsina||Recruiting|
|Contact: Halima Aliyu|
|Ahmadu Bello University Teaching Hospital Zaria||Recruiting|
|Contact: Aliyu Mande|