Mixed-Methods Study Identifying Key Intervention Targets to Improve Participation in Daily Living Activities in Primary Sjögren's Syndrome Patients

United Kingdom Primary Sjögren's Syndrome Registry

Research output: Contribution to journalArticle

3 Citations (Scopus)

Abstract

Objective: Functional ability and participation in life situations are compromised in many primary Sjögren's syndrome (SS) patients. This study aimed to identify the key barriers and priorities to participation in daily living activities, in order to develop potential future interventions. Methods: Group concept mapping, a semiquantitative, mixed-methods approach was used to identify and structure ideas from UK primary SS patients, adult household members living with a primary SS patient, and health care professionals. Brainstorming generated ideas, which were summarized into a final set of statements. Participants individually arranged these statements into themes and rated each statement for importance. Multidimensional scaling and hierarchical cluster analysis were applied to sorted and rated data to produce visual representations of the ideas (concept maps), enabling identification of agreed priority areas for interventions. Results: A total of 121 patients, 43 adult household members, and 67 health care professionals took part. In sum, 463 ideas were distilled down to 94 statements. These statements were grouped into 7 clusters: Patient Empowerment, Symptoms, Wellbeing, Access and Coordination of Health Care, Knowledge and Support, Public Awareness and Support, and Friends and Family. Patient Empowerment and Symptoms were rated as priority conceptual themes. Important statements within priority clusters indicate patients should be taken seriously and supported to self-manage symptoms of oral and ocular dryness, fatigue, pain, and poor sleep. Conclusion: Our data highlighted the fact that in addition to managing primary SS symptoms, interventions aiming to improve patient empowerment, general wellbeing, access to health care, patient education, and social support are important to facilitate improved participation in daily living activities.

Original languageEnglish
Pages (from-to)1064-1073
Number of pages10
JournalArthritis Care and Research
Volume70
Issue number7
Early online date6 Feb 2018
DOIs
Publication statusPublished - 1 Jul 2018

ASJC Scopus subject areas

  • Rheumatology

Cite this

Mixed-Methods Study Identifying Key Intervention Targets to Improve Participation in Daily Living Activities in Primary Sjögren's Syndrome Patients. / United Kingdom Primary Sjögren's Syndrome Registry.

In: Arthritis Care and Research, Vol. 70, No. 7, 01.07.2018, p. 1064-1073.

Research output: Contribution to journalArticle

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title = "Mixed-Methods Study Identifying Key Intervention Targets to Improve Participation in Daily Living Activities in Primary Sj{\"o}gren's Syndrome Patients",
abstract = "Objective: Functional ability and participation in life situations are compromised in many primary Sj{\"o}gren's syndrome (SS) patients. This study aimed to identify the key barriers and priorities to participation in daily living activities, in order to develop potential future interventions. Methods: Group concept mapping, a semiquantitative, mixed-methods approach was used to identify and structure ideas from UK primary SS patients, adult household members living with a primary SS patient, and health care professionals. Brainstorming generated ideas, which were summarized into a final set of statements. Participants individually arranged these statements into themes and rated each statement for importance. Multidimensional scaling and hierarchical cluster analysis were applied to sorted and rated data to produce visual representations of the ideas (concept maps), enabling identification of agreed priority areas for interventions. Results: A total of 121 patients, 43 adult household members, and 67 health care professionals took part. In sum, 463 ideas were distilled down to 94 statements. These statements were grouped into 7 clusters: Patient Empowerment, Symptoms, Wellbeing, Access and Coordination of Health Care, Knowledge and Support, Public Awareness and Support, and Friends and Family. Patient Empowerment and Symptoms were rated as priority conceptual themes. Important statements within priority clusters indicate patients should be taken seriously and supported to self-manage symptoms of oral and ocular dryness, fatigue, pain, and poor sleep. Conclusion: Our data highlighted the fact that in addition to managing primary SS symptoms, interventions aiming to improve patient empowerment, general wellbeing, access to health care, patient education, and social support are important to facilitate improved participation in daily living activities.",
author = "{United Kingdom Primary Sj{\"o}gren's Syndrome Registry} and Hackett, {Katie L.} and Deane, {Katherine H.O.} and Newton, {Julia L.} and Vincent Deary and Bowman, {Simon J.} and Tim Rapley and Ng, {Wan Fai} and Sue Brailsford and Joanne Dasgin and Theodoros Dimitroulas and Lucy Kadiki and Daljit Kaur and George Kitas and Esther Gordon and Cathy Lawson and Gill Ortiz and Elizabeth Price and Suzannah Pegler and Gavin Clunie and Suzanne Lane and Ginny Rose and Sue Cuckow and Bridget Griffiths and Sheryl Mitchell and Christine Downie and Sarah Legg and Susan Pugmire and Saravanan Vadivelu and Anne Field and Stephen Kaye and Devesh Mewar and Patricia Medcalf and Pamela Tomlinson and Debbie Whiteside and Neil McHugh and John Pauling and Julie James and Andrea Dowden and David Coady and Elizabeth Kidd and Lynne Palmer and Bhaskar Dasgupta and Victoria Katsande and Pamela Long and Olivia Godia and Usha Chandra and Kirsten MacKay",
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AU - United Kingdom Primary Sjögren's Syndrome Registry

AU - Hackett, Katie L.

AU - Deane, Katherine H.O.

AU - Newton, Julia L.

AU - Deary, Vincent

AU - Bowman, Simon J.

AU - Rapley, Tim

AU - Ng, Wan Fai

AU - Brailsford, Sue

AU - Dasgin, Joanne

AU - Dimitroulas, Theodoros

AU - Kadiki, Lucy

AU - Kaur, Daljit

AU - Kitas, George

AU - Gordon, Esther

AU - Lawson, Cathy

AU - Ortiz, Gill

AU - Price, Elizabeth

AU - Pegler, Suzannah

AU - Clunie, Gavin

AU - Lane, Suzanne

AU - Rose, Ginny

AU - Cuckow, Sue

AU - Griffiths, Bridget

AU - Mitchell, Sheryl

AU - Downie, Christine

AU - Legg, Sarah

AU - Pugmire, Susan

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AU - Field, Anne

AU - Kaye, Stephen

AU - Mewar, Devesh

AU - Medcalf, Patricia

AU - Tomlinson, Pamela

AU - Whiteside, Debbie

AU - McHugh, Neil

AU - Pauling, John

AU - James, Julie

AU - Dowden, Andrea

AU - Coady, David

AU - Kidd, Elizabeth

AU - Palmer, Lynne

AU - Dasgupta, Bhaskar

AU - Katsande, Victoria

AU - Long, Pamela

AU - Godia, Olivia

AU - Chandra, Usha

AU - MacKay, Kirsten

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N2 - Objective: Functional ability and participation in life situations are compromised in many primary Sjögren's syndrome (SS) patients. This study aimed to identify the key barriers and priorities to participation in daily living activities, in order to develop potential future interventions. Methods: Group concept mapping, a semiquantitative, mixed-methods approach was used to identify and structure ideas from UK primary SS patients, adult household members living with a primary SS patient, and health care professionals. Brainstorming generated ideas, which were summarized into a final set of statements. Participants individually arranged these statements into themes and rated each statement for importance. Multidimensional scaling and hierarchical cluster analysis were applied to sorted and rated data to produce visual representations of the ideas (concept maps), enabling identification of agreed priority areas for interventions. Results: A total of 121 patients, 43 adult household members, and 67 health care professionals took part. In sum, 463 ideas were distilled down to 94 statements. These statements were grouped into 7 clusters: Patient Empowerment, Symptoms, Wellbeing, Access and Coordination of Health Care, Knowledge and Support, Public Awareness and Support, and Friends and Family. Patient Empowerment and Symptoms were rated as priority conceptual themes. Important statements within priority clusters indicate patients should be taken seriously and supported to self-manage symptoms of oral and ocular dryness, fatigue, pain, and poor sleep. Conclusion: Our data highlighted the fact that in addition to managing primary SS symptoms, interventions aiming to improve patient empowerment, general wellbeing, access to health care, patient education, and social support are important to facilitate improved participation in daily living activities.

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