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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)

28 mei 2021 bijgewerkt door: 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.

Studie Overzicht

Toestand

Werving

Conditie

Gedetailleerde beschrijving

"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).

Studietype

Observationeel

Inschrijving (Verwacht)

99

Contacten en locaties

In dit gedeelte vindt u de contactgegevens van degenen die het onderzoek uitvoeren en informatie over waar dit onderzoek wordt uitgevoerd.

Studiecontact

Studie Contact Back-up

Studie Locaties

Deelname Criteria

Onderzoekers zoeken naar mensen die aan een bepaalde beschrijving voldoen, de zogenaamde geschiktheidscriteria. Enkele voorbeelden van deze criteria zijn iemands algemene gezondheidstoestand of eerdere behandelingen.

Geschiktheidscriteria

Leeftijden die in aanmerking komen voor studie

9 jaar tot 18 jaar (Kind, Volwassen)

Accepteert gezonde vrijwilligers

Nee

Geslachten die in aanmerking komen voor studie

Allemaal

Bemonsteringsmethode

Kanssteekproef

Studie Bevolking

Nuffield Orthopaedic Centre Oxford, Usual referral clinic.

Beschrijving

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.

Studie plan

Dit gedeelte bevat details van het studieplan, inclusief hoe de studie is opgezet en wat de studie meet.

Hoe is de studie opgezet?

Ontwerpdetails

Wat meet het onderzoek?

Primaire uitkomstmaten

Uitkomstmaat
Maatregel Beschrijving
Tijdsspanne
study one interviews
Tijdsspanne: one hour
views and opinions of participants
one hour

Secundaire uitkomstmaten

Uitkomstmaat
Maatregel Beschrijving
Tijdsspanne
study two Delphi
Tijdsspanne: one hour
consensus of views and opinions
one hour

Medewerkers en onderzoekers

Hier vindt u mensen en organisaties die betrokken zijn bij dit onderzoek.

Sponsor

Oxford Brookes University

Studie record data

Deze datums volgen de voortgang van het onderzoeksdossier en de samenvatting van de ingediende resultaten bij ClinicalTrials.gov. Studieverslagen en gerapporteerde resultaten worden beoordeeld door de National Library of Medicine (NLM) om er zeker van te zijn dat ze voldoen aan specifieke kwaliteitscontrolenormen voordat ze op de openbare website worden geplaatst.

Bestudeer belangrijke data

Studie start (Werkelijk)

1 mei 2021

Primaire voltooiing (Verwacht)

1 mei 2022

Studie voltooiing (Verwacht)

30 december 2022

Studieregistratiedata

Eerst ingediend

21 mei 2021

Eerst ingediend dat voldeed aan de QC-criteria

21 mei 2021

Eerst geplaatst (Werkelijk)

26 mei 2021

Updates van studierecords

Laatste update geplaatst (Werkelijk)

2 juni 2021

Laatste update ingediend die voldeed aan QC-criteria

28 mei 2021

Laatst geverifieerd

1 mei 2021

Meer informatie

Termen gerelateerd aan deze studie

Trefwoorden

Aanvullende relevante MeSH-voorwaarden

Andere studie-ID-nummers

  • 110611

Informatie over medicijnen en apparaten, studiedocumenten

Bestudeert een door de Amerikaanse FDA gereguleerd geneesmiddel

Nee

Bestudeert een door de Amerikaanse FDA gereguleerd apparaatproduct

Nee

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