Your Rheum Young Persons’ Advisory Group – Questionnaire

Exploring areas of research

My name is Lianne Kearsley-Fleet and I am a researcher at The University of Manchester.

I have previously looked at which biologic therapies children and young people with JIA use in the UK, and how well the drugs work. I am now starting to think about my own research path and am particularly interested in looking at those children and young people who are now young adults, where there is currently limited information available.

I would like to present below some areas I am thinking of researching and would value your feedback as to whether it is an area of interest to you as adolescents and young adults with rheumatic diseases.

Don't forget to add your name and contact details at the end of this survey so that we can send you your voucher for participating.

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* 1. Do you have juvenile idiopathic arthritis (JIA)?

Yes

If not (please specify)

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* 2. How old are you?

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* 3. Do you think there is a need for research in young adults with JIA beyond the childhood research that has already been done?

Yes (please specify)

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* 4. Which of the following areas of research would be most important to you?

	Not useful	A little useful	Very useful	Don't know
Disease activity (i.e. arthritis / joint count)	Disease activity (i.e. arthritis / joint count) Not useful	Disease activity (i.e. arthritis / joint count) A little useful	Disease activity (i.e. arthritis / joint count) Very useful	Disease activity (i.e. arthritis / joint count) Don't know
Is there anything in particular on this topic which is important to you?
Functional ability (i.e. moving around the house, getting ready, chores, walking, activities of daily living)	Functional ability (i.e. moving around the house, getting ready, chores, walking, activities of daily living) Not useful	Functional ability (i.e. moving around the house, getting ready, chores, walking, activities of daily living) A little useful	Functional ability (i.e. moving around the house, getting ready, chores, walking, activities of daily living) Very useful	Functional ability (i.e. moving around the house, getting ready, chores, walking, activities of daily living) Don't know
Is there anything in particular on this topic which is important to you?
Pain	Pain Not useful	Pain A little useful	Pain Very useful	Pain Don't know
Is there anything in particular on this topic which is important to you?
Fatigue	Fatigue Not useful	Fatigue A little useful	Fatigue Very useful	Fatigue Don't know
Is there anything in particular on this topic which is important to you?
Quality of life (i.e. general health, limitations of activity, socialising)	Quality of life (i.e. general health, limitations of activity, socialising) Not useful	Quality of life (i.e. general health, limitations of activity, socialising) A little useful	Quality of life (i.e. general health, limitations of activity, socialising) Very useful	Quality of life (i.e. general health, limitations of activity, socialising) Don't know
Is there anything in particular on this topic which is important to you?
Mental health (i.e. positive outlook, support in managing a long-term condition)	Mental health (i.e. positive outlook, support in managing a long-term condition) Not useful	Mental health (i.e. positive outlook, support in managing a long-term condition) A little useful	Mental health (i.e. positive outlook, support in managing a long-term condition) Very useful	Mental health (i.e. positive outlook, support in managing a long-term condition) Don't know
Is there anything in particular on this topic which is important to you?
Education / occupational status (i.e. level of education, ease of being in work)	Education / occupational status (i.e. level of education, ease of being in work) Not useful	Education / occupational status (i.e. level of education, ease of being in work) A little useful	Education / occupational status (i.e. level of education, ease of being in work) Very useful	Education / occupational status (i.e. level of education, ease of being in work) Don't know
Is there anything in particular on this topic which is important to you?
Serious adverse events (e.g. infections)	Serious adverse events (e.g. infections) Not useful	Serious adverse events (e.g. infections) A little useful	Serious adverse events (e.g. infections) Very useful	Serious adverse events (e.g. infections) Don't know
Is there anything in particular on this topic which is important to you?
Adverse drug reactions (i.e. health events you feel are related to the drug you are taking)	Adverse drug reactions (i.e. health events you feel are related to the drug you are taking) Not useful	Adverse drug reactions (i.e. health events you feel are related to the drug you are taking) A little useful	Adverse drug reactions (i.e. health events you feel are related to the drug you are taking) Very useful	Adverse drug reactions (i.e. health events you feel are related to the drug you are taking) Don't know
Is there anything in particular on this topic which is important to you?
Fertility / sexual health / pregnancy outcomes / parenthood (both male and female)	Fertility / sexual health / pregnancy outcomes / parenthood (both male and female) Not useful	Fertility / sexual health / pregnancy outcomes / parenthood (both male and female) A little useful	Fertility / sexual health / pregnancy outcomes / parenthood (both male and female) Very useful	Fertility / sexual health / pregnancy outcomes / parenthood (both male and female) Don't know
Is there anything in particular on this topic which is important to you?
Issues around transfer of care / experiences between different teams (paediatrics versus adults, or various specialities)	Issues around transfer of care / experiences between different teams (paediatrics versus adults, or various specialities) Not useful	Issues around transfer of care / experiences between different teams (paediatrics versus adults, or various specialities) A little useful	Issues around transfer of care / experiences between different teams (paediatrics versus adults, or various specialities) Very useful	Issues around transfer of care / experiences between different teams (paediatrics versus adults, or various specialities) Don't know
Is there anything in particular on this topic which is important to you?
Other ares of interest (please specify)	Other ares of interest (please specify) Not useful	Other ares of interest (please specify) A little useful	Other ares of interest (please specify) Very useful	Other ares of interest (please specify) Don't know
Is there anything in particular on this topic which is important to you?

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* 5. Is there anything else you would like me to investigate? What do you think we should be focusing on answering through our research?

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* 6. If you would like to receive a voucher as a thank you for your participation in this survey, please enter your name and email address below.

Name

Email Address

Thank you for taking the time to complete this questionnaire. Your feedback is hugely helpful to me. If you would like any further information please email me at: lianne.kearsley-fleet@manchester.ac.uk