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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)

2021年5月28日 更新者: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:

  1. 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.
  2. Delphi study: which aims to develop a diet and physical activity intervention for children and young adult with JIA.

調査の概要

状態

募集

詳細な説明

"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:

  1. Systematic review: to evaluate current evidence about diet, health and health related quality of life in children and young adult with JIA.
  2. 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.
  3. 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).

研究の種類

観察的

入学 (予想される)

99

連絡先と場所

このセクションには、調査を実施する担当者の連絡先の詳細と、この調査が実施されている場所に関する情報が記載されています。

研究連絡先

研究連絡先のバックアップ

研究場所

    • Oxfordshire
      • Oxford、Oxfordshire、イギリス、ox3obp
        • 募集
        • Najmeh Zare
        • コンタクト:

参加基準

研究者は、適格基準と呼ばれる特定の説明に適合する人を探します。これらの基準のいくつかの例は、人の一般的な健康状態または以前の治療です。

適格基準

就学可能な年齢

9年~18年 (子、大人)

健康ボランティアの受け入れ

いいえ

受講資格のある性別

全て

サンプリング方法

確率サンプル

調査対象母集団

Nuffield Orthopaedic Centre Oxford, Usual referral clinic.

説明

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.

研究計画

このセクションでは、研究がどのように設計され、研究が何を測定しているかなど、研究計画の詳細を提供します。

研究はどのように設計されていますか?

デザインの詳細

この研究は何を測定していますか?

主要な結果の測定

結果測定
メジャーの説明
時間枠
study one interviews
時間枠:one hour
views and opinions of participants
one hour

二次結果の測定

結果測定
メジャーの説明
時間枠
study two Delphi
時間枠:one hour
consensus of views and opinions
one hour

協力者と研究者

ここでは、この調査に関係する人々や組織を見つけることができます。

スポンサー

研究記録日

これらの日付は、ClinicalTrials.gov への研究記録と要約結果の提出の進捗状況を追跡します。研究記録と報告された結果は、国立医学図書館 (NLM) によって審査され、公開 Web サイトに掲載される前に、特定の品質管理基準を満たしていることが確認されます。

主要日程の研究

研究開始 (実際)

2021年5月1日

一次修了 (予想される)

2022年5月1日

研究の完了 (予想される)

2022年12月30日

試験登録日

最初に提出

2021年5月21日

QC基準を満たした最初の提出物

2021年5月21日

最初の投稿 (実際)

2021年5月26日

学習記録の更新

投稿された最後の更新 (実際)

2021年6月2日

QC基準を満たした最後の更新が送信されました

2021年5月28日

最終確認日

2021年5月1日

詳しくは

本研究に関する用語

医薬品およびデバイス情報、研究文書

米国FDA規制医薬品の研究

いいえ

米国FDA規制機器製品の研究

いいえ

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