N/A
N=192
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
Sickle Cell Disease
Bottom Line
View on ClinicalTrials.gov: NCT04505969 ↗Enrolled (actual)
192
Serious AEs
—
Results posted
May 2024
Primary outcome: Primary: Level of Satisfaction on SCD Current Treatment and Management — 4.12 score on a scale
Study Design & Population
- Study type
- Observational
- Phase
- N/A
- Interventions
- Questionnaire to assess needs (Other)
- Age
- Adult, Older Adult · 18+ yrs
- Sex
- All
- Sponsor
- Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus
- Primary completion
- Nov 2020
Outcome Measures
| Outcome | Result | p-value |
|---|---|---|
| PRIMARY Level of Satisfaction on SCD Current Treatment and Management |
4.12 | — |
| PRIMARY Rating of the Overall Service Quality |
4.37 | — |
| PRIMARY Level of Satisfaction About Nursing Care in Clinic |
4.22 | — |
| PRIMARY Rating of the Facilities to Manage SCD Patients |
4.12 | — |
| PRIMARY Level of Satisfaction on Responsibility |
4.22 | — |
| PRIMARY Level of Global Satisfaction on the Work With SCD Patients |
4.17 | — |
| SECONDARY Level of Appreciation of the Work |
4.25 | — |
| SECONDARY Level of Satisfaction on Protection From Injuries and Professional Risks |
4.00 | — |
| SECONDARY Level of Satisfaction on the Management of the Clinic |
4.17 | — |
| SECONDARY Level of Satisfaction on the Instruction Given by Doctor About Pain Control |
4.33 | — |
| SECONDARY Level of Satisfaction on the Support Received at the Time of the Diagnosis |
4.33 | — |
| SECONDARY Level of Satisfaction on the Involvement by Doctors in Decisions That Affect the Course of Disease |
4.35 | — |
| SECONDARY Level of Satisfaction on the Services Provided in the Lab |
4.12 | — |
| SECONDARY Level of Satisfaction on the Communication About Sickle Cell Disease and Its Treatment |
4.25 | — |
| SECONDARY Level of Satisfaction in Communicating With Lab Technicians |
4.07 | — |
| SECONDARY Level of Satisfaction in Communicating With Nurses |
4.19 | — |
| SECONDARY Level of Satisfaction on the Relationship You Have With the Patients |
4.49 | — |
| SECONDARY Level of Satisfaction on Involvement in the Decision-making Process of Your Centre |
4.06 | — |
| SECONDARY Level of Satisfaction on Professional Career Advancement |
4.12 | — |
| SECONDARY Level of Satisfaction on the Decision-making Autonomy |
4.11 | — |
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.
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.
Data sourced from ClinicalTrials.gov (NCT04505969). Outcome figures and adverse-event rates are extracted automatically from the registry's posted results and are provided for clinician reference, not as a substitute for the primary publication.