The Development of Paediatric Bronchiectasis Quality of Life Questionnaires
试验速览
- 阶段
- 不适用
- 状态
- Enrolling By Invitation
- 发起方
- 入组人数
- 78
- 试验地点
- 1
- 主要终点
- Quality of Life questionnaires for paediatric Bronchiectasis
研究概览
简要总结
To develop and refine a disease-specific quality of life (QoL) questionnaire for children with bronchiectasis, informed by qualitative interviews with affected children, young people, and their parents.
The paediatric bronchiectasis- specific quality of life (PQOL-B) questionnaire will be developed across four demographics:
Children aged 8-12 years
Young people aged 13 -17 years
Parent-proxy for 2-5years
Parent-proxy for 6-12years
详细描述
To develop and refine a disease-specific quality of life (QoL) questionnaire for children with bronchiectasis, informed by qualitative interviews with affected children, young people, and their parents.
The paediatric bronchiectasis- specific quality of life (PQOL-B) questionnaire will be developed across four demographics:
- Children aged 8-12 years
- Young people aged 13 -17 years
- Parent-proxy for 2-5years
- Parent-proxy for 6-12years
The development of the questionnaires will be carried out by conducting two different stages of interviews over a 12- month time period:
- Concept Elicitation - Semi structured interviews - will be to talk about what life is like living with bronchiectasis or living with a child who has bronchiectasis.
- Cognitive testing interviews - Once we create a first draft of the PQOL-B questionnaire, we will ask children, young people, and parents to try it out. In these interviews, we will ask if the questions make sense, are easy to understand, and feel relevant. This helps us refine and improve the questionnaire.
研究设计
- 研究类型
- Observational
- 观察模型
- Case Only
- 时间视角
- Other
入排标准
- 年龄范围
- 2 Years 至 —（Child, Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Patient, child and young persons, aged 8 -17 years with bronchiectasis diagnosed on CT scan
- •Parent of child aged 2-12 years with bronchiectasis diagnosed on CT scan
- •Written informed consent/assent available
排除标准
- •Child under 8 years with bronchiectasis for patient direct participation
- •No consent/assent received
- •Confirmed Cystic Fibrosis or Primary Ciliary Dyskinesia diagnosis
结局指标
主要结局
Quality of Life questionnaires for paediatric Bronchiectasis
时间窗: 1 year
Across 4 demographics - these questionnaires will be developed and testing on the population it is designed for.
次要结局
未报告次要终点