Cross sectional,: qualitative thematic analysis of patient perspectives of disease impact in juvenile idiopathic arthritis-associated uveitis

Ethan S Sen; Michelle J Morgan; Rachael MacLeod; Helen Strike; Ann Hinchcliffe; Andrew D Dick; Brinda Muthusamy; Athimalaipet V Ramanan

doi:10.1186/s12969-017-0189-6

Cross sectional, qualitative thematic analysis of patient perspectives of disease impact in juvenile idiopathic arthritis-associated uveitis

Ethan S Sen, Michelle J Morgan, Rachael MacLeod, Helen Strike, Ann Hinchcliffe, Andrew D Dick, Brinda Muthusamy, Athimalaipet V Ramanan

Research output: Contribution to journal › Article (Academic Journal) › peer-review

13 Citations (Scopus)

306 Downloads (Pure)

Abstract

BACKGROUND: Chronic health conditions in children can have a significant impact on their quality of life. The aim of this study was to explore the subjective experience of children and young people being treated for chronic, non-infectious uveitis associated with a systemic disease such as juvenile idiopathic arthritis.

METHODS: A semi-structured interview was conducted with 10 children and young people aged between 6 and 18 years of age and their parents.

RESULTS: Preliminary thematic analysis indicated that both the treatment and complications of the disorder have a significant impact on the quality of life and emotional well-being of patients, not only in terms of the discomfort experienced but also in perceptions of social isolation, anxiety and sense of injustice.

CONCLUSION: This study shows that themes including "impact on school", "social factors" and "emotional reactions" are important domains influencing health-related quality of life (HRQoL) in children with chronic uveitis. Inclusion of questions relating to these domains should be considered in future uveitis-specific tools examining HRQoL in these patients.

Original language	English
Pages (from-to)	58
Journal	Pediatric Rheumatology
Volume	15
Issue number	1
DOIs	https://doi.org/10.1186/s12969-017-0189-6
Publication status	Published - 4 Aug 2017

Keywords

Journal Article
Juvenile idiopathic arthritis
Uveitis
Quality of life
Patient-reported outcome measures

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Cite this

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title = "Cross sectional,: qualitative thematic analysis of patient perspectives of disease impact in juvenile idiopathic arthritis-associated uveitis",

abstract = "BACKGROUND: Chronic health conditions in children can have a significant impact on their quality of life. The aim of this study was to explore the subjective experience of children and young people being treated for chronic, non-infectious uveitis associated with a systemic disease such as juvenile idiopathic arthritis.METHODS: A semi-structured interview was conducted with 10 children and young people aged between 6 and 18 years of age and their parents.RESULTS: Preliminary thematic analysis indicated that both the treatment and complications of the disorder have a significant impact on the quality of life and emotional well-being of patients, not only in terms of the discomfort experienced but also in perceptions of social isolation, anxiety and sense of injustice.CONCLUSION: This study shows that themes including {"}impact on school{"}, {"}social factors{"} and {"}emotional reactions{"} are important domains influencing health-related quality of life (HRQoL) in children with chronic uveitis. Inclusion of questions relating to these domains should be considered in future uveitis-specific tools examining HRQoL in these patients.",

keywords = "Journal Article, Juvenile idiopathic arthritis, Uveitis, Quality of life, Patient-reported outcome measures",

author = "Sen, {Ethan S} and Morgan, {Michelle J} and Rachael MacLeod and Helen Strike and Ann Hinchcliffe and Dick, {Andrew D} and Brinda Muthusamy and Ramanan, {Athimalaipet V}",

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Cross sectional, qualitative thematic analysis of patient perspectives of disease impact in juvenile idiopathic arthritis-associated uveitis. / Sen, Ethan S; Morgan, Michelle J; MacLeod, Rachael; Strike, Helen; Hinchcliffe, Ann; Dick, Andrew D; Muthusamy, Brinda; Ramanan, Athimalaipet V.

In: Pediatric Rheumatology, Vol. 15, No. 1, 04.08.2017, p. 58.

Research output: Contribution to journal › Article (Academic Journal) › peer-review

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T2 - qualitative thematic analysis of patient perspectives of disease impact in juvenile idiopathic arthritis-associated uveitis

AU - Sen, Ethan S

AU - Morgan, Michelle J

AU - MacLeod, Rachael

AU - Strike, Helen

AU - Hinchcliffe, Ann

AU - Dick, Andrew D

AU - Muthusamy, Brinda

AU - Ramanan, Athimalaipet V

PY - 2017/8/4

Y1 - 2017/8/4

N2 - BACKGROUND: Chronic health conditions in children can have a significant impact on their quality of life. The aim of this study was to explore the subjective experience of children and young people being treated for chronic, non-infectious uveitis associated with a systemic disease such as juvenile idiopathic arthritis.METHODS: A semi-structured interview was conducted with 10 children and young people aged between 6 and 18 years of age and their parents.RESULTS: Preliminary thematic analysis indicated that both the treatment and complications of the disorder have a significant impact on the quality of life and emotional well-being of patients, not only in terms of the discomfort experienced but also in perceptions of social isolation, anxiety and sense of injustice.CONCLUSION: This study shows that themes including "impact on school", "social factors" and "emotional reactions" are important domains influencing health-related quality of life (HRQoL) in children with chronic uveitis. Inclusion of questions relating to these domains should be considered in future uveitis-specific tools examining HRQoL in these patients.

AB - BACKGROUND: Chronic health conditions in children can have a significant impact on their quality of life. The aim of this study was to explore the subjective experience of children and young people being treated for chronic, non-infectious uveitis associated with a systemic disease such as juvenile idiopathic arthritis.METHODS: A semi-structured interview was conducted with 10 children and young people aged between 6 and 18 years of age and their parents.RESULTS: Preliminary thematic analysis indicated that both the treatment and complications of the disorder have a significant impact on the quality of life and emotional well-being of patients, not only in terms of the discomfort experienced but also in perceptions of social isolation, anxiety and sense of injustice.CONCLUSION: This study shows that themes including "impact on school", "social factors" and "emotional reactions" are important domains influencing health-related quality of life (HRQoL) in children with chronic uveitis. Inclusion of questions relating to these domains should be considered in future uveitis-specific tools examining HRQoL in these patients.

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JO - Pediatric Rheumatology

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