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.
Study Type
OBSERVATIONAL
Enrollment
192
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
National Hospital Abuja
Abuja, Nigeria
Barau Dikko Teaching Hospital, Kaduna State University
Kaduna, Nigeria
Federal Medical Centre Katsina
Katsina, Nigeria
Ahmadu Bello University Teaching Hospital Zaria
Zaria, Nigeria
Level of Satisfaction on SCD Current Treatment and Management
Likert scale from 1 (very dissatisfied) to 5 (very satisfied). This Outcome Measure was pre-specified to be measured in only SCD patients/parents.
Time frame: Single-point assessment, at the enrolment
Rating of the Overall Service Quality
Likert scale from 1 (very poor) to 5 (very good). This Outcome Measure was pre-specified to be measured in only SCD patients/parents.
Time frame: Single-point assessment, at the enrolment
Level of Satisfaction About Nursing Care in Clinic
Likert scale from 1 (very dissatisfied) to 5 (very satisfied). This Outcome Measure was pre-specified to be measured in only SCD patients/parents.
Time frame: Single-point, at the enrollment
Rating of the Facilities to Manage SCD Patients
Likert scale from 1 (very poor) to 5 (very good). This Outcome Measure was pre-specified to be measured in only healthcare professionals working with SCD patients
Time frame: Single-point assessment, at the enrolment
Level of Satisfaction on Responsibility
Healthcare professionals have been asked to indicate their satisfaction about their responsibility in the clinic, using a Likert scale from 1 (very dissatisfied) to 5 (very satisfied). This Outcome Measure was pre-specified to be measured in only healthcare professionals working with SCD patients.
Time frame: Single-point assessment, at the enrolment
Level of Global Satisfaction on the Work With SCD Patients
Likert scale from 1 (very dissatisfied) to 5 (very satisfied)
Time frame: Single-point assessment, at the enrolment
Level of Appreciation of the Work
Likert scale from 1 (very dissatisfied) to 5 (very satisfied). This Outcome Measure was pre-specified to be measured in only healthcare professionals working with SCD patients
Time frame: Single-point assessment, at the enrolment
Level of Satisfaction on Protection From Injuries and Professional Risks
Likert scale from 1 (very dissatisfied) to 5 (very satisfied). This Outcome Measure was pre-specified to be measured in only healthcare professionals working with SCD patients
Time frame: Single-point assessment, at the enrolment
Level of Satisfaction on the Management of the Clinic
Likert scale from 1 (very dissatisfied) to 5 (very satisfied). This Outcome Measure was pre-specified to be measured in only healthcare professionals working with SCD patients
Time frame: Single-point assessment, at the enrolment
Level of Satisfaction on the Instruction Given by Doctor About Pain Control
Likert scale from 1 (very dissatisfied) to 5 (very satisfied). This Outcome Measure was pre-specified to be measured in only SCD patients or parents of children with SCD
Time frame: Single-point assessment, at the enrollment
Level of Satisfaction on the Support Received at the Time of the Diagnosis
Likert scale from 1 (very dissatisfied) to 5 (very satisfied). This Outcome Measure was pre-specified to be measured in only SCD patients/parents
Time frame: Single-point assessment, at the enrolment
Level of Satisfaction on the Involvement by Doctors in Decisions That Affect the Course of Disease
Likert scale from 1 (very dissatisfied) to 5 (very satisfied). This Outcome Measure was pre-specified to be measured in only SCD patients/parents.
Time frame: Single-point assessment, at the enrollment
Level of Satisfaction on the Services Provided in the Lab
Likert scale from 1 (very dissatisfied) to 5 (very satisfied). This Outcome Measure was pre-specified to be measured in only SCD patients/parents
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Time frame: Single-point assessment, at the enrolment
Level of Satisfaction on the Communication About Sickle Cell Disease and Its Treatment
Likert scale from 1 (very dissatisfied) to 5 (very satisfied). This Outcome Measure was pre-specified to be measured in only SCD patients/parents
Time frame: Single-point assessment, at the enrolment
Level of Satisfaction in Communicating With Lab Technicians
Likert scale from 1 (very dissatisfied) to 5 (very satisfied). This Outcome Measure was pre-specified to be measured in only SCD patients/parents.
Time frame: Single-point assessment, at the enrolment
Level of Satisfaction in Communicating With Nurses
Likert scale from 1 (very dissatisfied) to 5 (very satisfied). This Outcome Measure was pre-specified to be measured in only SCD patients/parents
Time frame: Single-point assessment, at the enrollment
Level of Satisfaction on the Relationship You Have With the Patients
Likert scale from 1 (very dissatisfied) to 5 (very satisfied). This Outcome Measure was pre-specified to be measured in only healthcare professionals working with SCD patients.
Time frame: Single-point assessment, at the enrolment
Level of Satisfaction on Involvement in the Decision-making Process of Your Centre
Likert scale from 1 (very dissatisfied) to 5 (very satisfied). This Outcome Measure was pre-specified to be measured in only healthcare professionals working with SCD patients.
Time frame: Single-point assessment, at the enrolment
Level of Satisfaction on Professional Career Advancement
Likert scale from 1 (very dissatisfied) to 5 (very satisfied). This Outcome Measure was pre-specified to be measured in only healthcare professionals working with SCD patients.
Time frame: Single-point assessment, at the enrolment
Level of Satisfaction on the Decision-making Autonomy
Likert scale from 1 (very dissatisfied) to 5 (very satisfied). This Outcome Measure was pre-specified to be measured in only healthcare professionals working with SCD patients.
Time frame: Single-point assessment, at the enrolment