Pilot Study to Assess Patients' and Health Workers' Needs Involved in Sickle Cell Disease Management
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 发起方
- 入组人数
- 192
- 试验地点
- 4
- 主要终点
- Level of Satisfaction on SCD Current Treatment and Management
研究概览
简要总结
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.
详细描述
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.
研究设计
- 研究类型
- Observational
- 观察模型
- Case Only
- 时间视角
- Cross Sectional
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- 未提供
排除标准
- 未提供
结局指标
主要结局
Level of Satisfaction on SCD Current Treatment and Management
时间窗: Single-point assessment, at the enrolment
Likert scale from 1 (very dissatisfied) to 5 (very satisfied). This Outcome Measure was pre-specified to be measured in only SCD patients/parents.
Rating of the Overall Service Quality
时间窗: Single-point assessment, at the enrolment
Likert scale from 1 (very poor) to 5 (very good). This Outcome Measure was pre-specified to be measured in only SCD patients/parents.
Level of Satisfaction About Nursing Care in Clinic
时间窗: Single-point, at the enrollment
Likert scale from 1 (very dissatisfied) to 5 (very satisfied). This Outcome Measure was pre-specified to be measured in only SCD patients/parents.
Level of Global Satisfaction on the Work With SCD Patients
时间窗: Single-point assessment, at the enrolment
Likert scale from 1 (very dissatisfied) to 5 (very satisfied)
Level of Satisfaction on Responsibility
时间窗: Single-point assessment, at the enrolment
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.
Rating of the Facilities to Manage SCD Patients
时间窗: Single-point assessment, at the enrolment
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
次要结局
- Level of Appreciation of the Work(Single-point assessment, at the enrolment)
- Level of Satisfaction on the Involvement by Doctors in Decisions That Affect the Course of Disease(Single-point assessment, at the enrollment)
- Level of Satisfaction on Protection From Injuries and Professional Risks(Single-point assessment, at the enrolment)
- Level of Satisfaction on the Services Provided in the Lab(Single-point assessment, at the enrolment)
- Level of Satisfaction on the Communication About Sickle Cell Disease and Its Treatment(Single-point assessment, at the enrolment)
- Level of Satisfaction in Communicating With Lab Technicians(Single-point assessment, at the enrolment)
- Level of Satisfaction on the Relationship You Have With the Patients(Single-point assessment, at the enrolment)
- Level of Satisfaction on the Management of the Clinic(Single-point assessment, at the enrolment)
- Level of Satisfaction on the Instruction Given by Doctor About Pain Control(Single-point assessment, at the enrollment)
- Level of Satisfaction on the Support Received at the Time of the Diagnosis(Single-point assessment, at the enrolment)
- Level of Satisfaction on Professional Career Advancement(Single-point assessment, at the enrolment)
- Level of Satisfaction on the Decision-making Autonomy(Single-point assessment, at the enrolment)
- Level of Satisfaction in Communicating With Nurses(Single-point assessment, at the enrollment)
- Level of Satisfaction on Involvement in the Decision-making Process of Your Centre(Single-point assessment, at the enrolment)