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An Investigation Into the Relationship Between Dietary Intake and Health-related Quality of Life in Children and Young People With Juvenile Idiopathic Arthritis (JIA)

2021년 5월 28일 업데이트: Najmeh Zare, Oxford Brookes University

"Physical activity and diet in children and young people with arthritis" A qualitative study of exploring stake holder's experiences.

Juvenile Idiopathic Arthritis (JIA) is the most common type of arthritis in children under the age of 16. The disease and its therapeutic management can cause serious long-term complications, which affect general activities and quality of life. The lack of specific guidelines for safe physical activity and appropriate management of any nutritional deficit aiming our study to find out your views and opinions about the needs of children and young people with juvenile idiopathic arthritis. We want to improve our knowledge about the impact of physical activity and eating habit on juvenile idiopathic arthritis and we want to develop a tool to help evaluate care. Few studies targeting quality of life and wellbeing in children adolescent populations have adopted the diet and physical activity perspective or approaches, consequently, this research project will help to address this gap through:

Interview: to look at young people's current experiences with JIA as well as their parents/caregivers and health care professionals. Study findings will provide a snapshot of the current experiences of participants, helping to improve our knowledge about JIA, physical activity, and diet. Qualitative studies exploring people perspectives on their experiences, when collected systematically, adds valuable depth, insight and understanding into the issues related to JIA not possible through quantitative methodologies. This study uses a qualitative approach known as framework methodology to understand stakeholder's experience of what helps and what hinders improving the quality of life in children and young adult with JIA. 21-30 stakeholders will be recruited in Oxford UK, to take part in individual semi-structured guided interviews lasting approximately one hour. Participant responses will be transcribed by the chief investigator and analysed to extract themes that will answer the research question.
Delphi study: which aims to develop a diet and physical activity intervention for children and young adult with JIA.

연구 개요

상태

모병

정황

청소년 특발성 관절염

상세 설명

"Physical activity and diet in children and young people with arthritis" A qualitative study of exploring stake holder's experiences.

Juvenile Idiopathic Arthritis (JIA) is the most common type of arthritis in children under the age of 16. The disease and its therapeutic management can cause serious long-term complications, which affect general activities and quality of life. The lack of specific guidelines for safe physical activity and appropriate management of any nutritional deficit aiming our study to find out your views and opinions about the needs of children and young people with juvenile idiopathic arthritis. We want to improve our knowledge about the impact of physical activity and eating habit on juvenile idiopathic arthritis and we want to develop a tool to help evaluate care. Few studies targeting quality of life and wellbeing in children adolescent populations have adopted diet and physical activity perspective or approaches, consequently this research project will help to address this gap through:

Systematic review: to evaluate current evidence about diet, health and health related quality of life in children and young adult with JIA.
Interview: to look at young people's current experiences with JIA as well as their parents/caregivers and health care professionals. Study findings will provide a snapshot of current experiences of participants, helping to improve our knowledge about JIA, physical activity, and diet. Qualitative studies exploring people perspectives on their experiences, when collected systematically, adds valuable depth, insight and understanding into the issues related to JIA not possible through quantitative methodologies. This study uses a qualitative approach known as framework methodology to understand stakeholder's experience of what helps and what hinders improving the quality of life in children and young adult with JIA. 21-30 stakeholders will be recruited in Oxford UK, to take part in individual semi-structured guided interviews lasting approximately one hour. Participant responses will be transcribed by the chief investigator (PhD student) and analysed to extract themes that will answer the research question.
Delphi study: which aims to develop diet and physical activity intervention for children and young adult with JIA.

This protocol covers the second and third approaches only (interview and Delphi).

연구 유형

관찰

등록 (예상)

연락처 및 위치

이 섹션에서는 연구를 수행하는 사람들의 연락처 정보와 이 연구가 수행되는 장소에 대한 정보를 제공합니다.

연구 연락처

이름: Najmeh Zare, phd student
전화번호: +4401865483293
이메일: 18106168@brookes.ac.uk

연구 연락처 백업

이름: Sarah Quiinton, Dr
전화번호: +44 (0) 1865 485694
이메일: sequinton@brookes.ac.uk

연구 장소

영국
- Oxfordshire
  - Oxford, Oxfordshire, 영국, ox3obp
    - 모병
    - Najmeh Zare
    - 연락하다:
      
      Sarah Quinton, Dr
      
      전화번호: +44 (0) 1865 485694
      
      이메일: sequinton@brookes.ac.uk

참여기준

연구원은 적격성 기준이라는 특정 설명에 맞는 사람을 찾습니다. 이러한 기준의 몇 가지 예는 개인의 일반적인 건강 상태 또는 이전 치료입니다.

자격 기준

공부할 수 있는 나이

9년 (어린이, 성인)

건강한 자원 봉사자를 받아들입니다

아니

연구 대상 성별

모두

샘플링 방법

확률 샘플

연구 인구

Nuffield Orthopaedic Centre Oxford, Usual referral clinic.

설명

Inclusion Criteria:

A) Patients
- Male or female, age range 9 to 18 years old.
- Diagnosed with JIA.
- Speaking and understanding English.
- Willing and able to provide consent if 16-18 years old, or have a parent/carer to provide consent and able to provide assent if the participant is <16.
- Having the access to telephone/video call for those who wish to have distance interview.

B) Parent/Carer

parent or caregiver of a child with JIA.
Willing and able to give informed consent for their own and their child's participation (if the child is under 16 years of age).
Having the access to telephone/video call for those who wish to have distance interview.
Speaking and understanding English. C) Healthcare professionals
Willing and able to give informed consent.
Clinical HCP with at least 2-year experience in treating children and young people with JIA.
Academic in the field of clinical research in the treatment of JIA.
Having the access to telephone/video call for those who wish to have distance interview.
Speaking and understanding English.

Exclusion Criteria:

Individuals will be excluded from the study if ANY of the following apply:

A) Patient

They have been diagnosed JIA but older than 18 years old.
Unable to speak and understand English. B) Healthcare professionals
HCP with insufficient experience in JIA management.
- They have less than two years of managing/treating JIA patients.
- They have worked in this field but have stopped for two years or more.

공부 계획

이 섹션에서는 연구 설계 방법과 연구가 측정하는 내용을 포함하여 연구 계획에 대한 세부 정보를 제공합니다.

연구는 어떻게 설계됩니까?

디자인 세부사항

연구는 무엇을 측정합니까?

주요 결과 측정

결과 측정	측정값 설명	기간
study one interviews 기간: one hour	views and opinions of participants	one hour

2차 결과 측정

결과 측정	측정값 설명	기간
study two Delphi 기간: one hour	consensus of views and opinions	one hour

공동 작업자 및 조사자

여기에서 이 연구와 관련된 사람과 조직을 찾을 수 있습니다.

스폰서

Oxford Brookes University

연구 기록 날짜

이 날짜는 ClinicalTrials.gov에 대한 연구 기록 및 요약 결과 제출의 진행 상황을 추적합니다. 연구 기록 및 보고된 결과는 공개 웹사이트에 게시되기 전에 특정 품질 관리 기준을 충족하는지 확인하기 위해 국립 의학 도서관(NLM)에서 검토합니다.

연구 주요 날짜

연구 시작 (실제)

2021년 5월 1일

기본 완료 (예상)

2022년 5월 1일

연구 완료 (예상)

2022년 12월 30일

연구 등록 날짜

최초 제출

2021년 5월 21일

QC 기준을 충족하는 최초 제출