World Workshop on Oral Medicine VIII:: Development of a core outcome set for dry mouth: the patient perspective

Alan Roger Santos-Silva; Alessandro Villa; Alexander Ross Kerr; Konstantina Delli; Melanie Louise Simms; Michal Kuten Shorrer; Paswach Wiriyakija; Siri Beier Jensen; Sven Eric Niklander; Vidya Sankar; Rícheal Ni Riordain

doi:10.1016/j.oooo.2023.01.015

World Workshop on Oral Medicine VIII: Development of a core outcome set for dry mouth: the patient perspective

Alan Roger Santos-Silva, Alessandro Villa, Alexander Ross Kerr, Konstantina Delli, Melanie Louise Simms, Michal Kuten Shorrer, Paswach Wiriyakija, Siri Beier Jensen, Sven Eric Niklander, Vidya Sankar, Rícheal Ni Riordain

Department of Dentistry and Oral Health

Research output: Contribution to journal/Conference contribution in journal/Contribution to newspaper › Journal article › Research › peer-review

7 Citations (Scopus)

Abstract

OBJECTIVE: We conducted a qualitative study of patients' perspectives on dry mouth outcomes to explore their personal experiences and investigate which outcomes are most important to them. This work was part of the WONDER initiative (World Workshop on Oral Medicine Outcomes Initiative for the Direction of Research) exploring Core Outcome Measures in Effectiveness Trials.

STUDY DESIGN: Using a study-specific topic guide, we conducted digitally recorded, semi-structured interviews of focus groups of patients with dry mouth secondary to Sjögren syndrome and head and neck radiotherapy. We conducted interviews until data saturation had been achieved and evaluated all transcripts for accuracy before we anonymized the data.

RESULTS: Two focus groups consisting of 4 participants per group identified 4 distinct themes: (1) impact on oral health and function, (2) social isolation and withdrawal, (3) frustration with dry mouth management, and (4) limited knowledge of the medical community and lack of understanding of family and friends.

CONCLUSIONS: The diversity of self-reported outcomes and the complexity of patient perceptions identified in our work may represent additional barriers to successful dry mouth management that should be considered in the design of future clinical trials.

Original language	English
Journal	Oral surgery, oral medicine, oral pathology and oral radiology
Volume	135
Issue	6
Pages (from-to)	876-884
Number of pages	9
DOIs	https://doi.org/10.1016/j.oooo.2023.01.015
Publication status	Published - Jun 2023

Keywords

Humans
Xerostomia/therapy
Sjogren's Syndrome
Qualitative Research
Patients
Outcome Assessment, Health Care

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10.1016/j.oooo.2023.01.015

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Santos-Silva, A. R., Villa, A., Kerr, A. R., Delli, K., Simms, M. L., Shorrer, M. K., Wiriyakija, P., Jensen, S. B., Niklander, S. E., Sankar, V., & Ni Riordain, R. (2023). World Workshop on Oral Medicine VIII: Development of a core outcome set for dry mouth: the patient perspective. Oral surgery, oral medicine, oral pathology and oral radiology, 135(6), 876-884. https://doi.org/10.1016/j.oooo.2023.01.015

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title = "World Workshop on Oral Medicine VIII:: Development of a core outcome set for dry mouth: the patient perspective",

abstract = "OBJECTIVE: We conducted a qualitative study of patients' perspectives on dry mouth outcomes to explore their personal experiences and investigate which outcomes are most important to them. This work was part of the WONDER initiative (World Workshop on Oral Medicine Outcomes Initiative for the Direction of Research) exploring Core Outcome Measures in Effectiveness Trials.STUDY DESIGN: Using a study-specific topic guide, we conducted digitally recorded, semi-structured interviews of focus groups of patients with dry mouth secondary to Sj{\"o}gren syndrome and head and neck radiotherapy. We conducted interviews until data saturation had been achieved and evaluated all transcripts for accuracy before we anonymized the data.RESULTS: Two focus groups consisting of 4 participants per group identified 4 distinct themes: (1) impact on oral health and function, (2) social isolation and withdrawal, (3) frustration with dry mouth management, and (4) limited knowledge of the medical community and lack of understanding of family and friends.CONCLUSIONS: The diversity of self-reported outcomes and the complexity of patient perceptions identified in our work may represent additional barriers to successful dry mouth management that should be considered in the design of future clinical trials.",

keywords = "Humans, Xerostomia/therapy, Sjogren's Syndrome, Qualitative Research, Patients, Outcome Assessment, Health Care",

author = "Santos-Silva, {Alan Roger} and Alessandro Villa and Kerr, {Alexander Ross} and Konstantina Delli and Simms, {Melanie Louise} and Shorrer, {Michal Kuten} and Paswach Wiriyakija and Jensen, {Siri Beier} and Niklander, {Sven Eric} and Vidya Sankar and {Ni Riordain}, R{\'i}cheal",

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year = "2023",

month = jun,

doi = "10.1016/j.oooo.2023.01.015",

language = "English",

volume = "135",

pages = "876--884",

journal = "Oral surgery, oral medicine, oral pathology and oral radiology",

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Santos-Silva, AR, Villa, A, Kerr, AR, Delli, K, Simms, ML, Shorrer, MK, Wiriyakija, P, Jensen, SB, Niklander, SE, Sankar, V & Ni Riordain, R 2023, 'World Workshop on Oral Medicine VIII: Development of a core outcome set for dry mouth: the patient perspective', Oral surgery, oral medicine, oral pathology and oral radiology, vol. 135, no. 6, pp. 876-884. https://doi.org/10.1016/j.oooo.2023.01.015

World Workshop on Oral Medicine VIII: Development of a core outcome set for dry mouth: the patient perspective. / Santos-Silva, Alan Roger; Villa, Alessandro; Kerr, Alexander Ross et al.
In: Oral surgery, oral medicine, oral pathology and oral radiology, Vol. 135, No. 6, 06.2023, p. 876-884.

Research output: Contribution to journal/Conference contribution in journal/Contribution to newspaper › Journal article › Research › peer-review

TY - JOUR

T1 - World Workshop on Oral Medicine VIII:

T2 - Development of a core outcome set for dry mouth: the patient perspective

AU - Santos-Silva, Alan Roger

AU - Villa, Alessandro

AU - Kerr, Alexander Ross

AU - Delli, Konstantina

AU - Simms, Melanie Louise

AU - Shorrer, Michal Kuten

AU - Wiriyakija, Paswach

AU - Jensen, Siri Beier

AU - Niklander, Sven Eric

AU - Sankar, Vidya

AU - Ni Riordain, Rícheal

PY - 2023/6

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N2 - OBJECTIVE: We conducted a qualitative study of patients' perspectives on dry mouth outcomes to explore their personal experiences and investigate which outcomes are most important to them. This work was part of the WONDER initiative (World Workshop on Oral Medicine Outcomes Initiative for the Direction of Research) exploring Core Outcome Measures in Effectiveness Trials.STUDY DESIGN: Using a study-specific topic guide, we conducted digitally recorded, semi-structured interviews of focus groups of patients with dry mouth secondary to Sjögren syndrome and head and neck radiotherapy. We conducted interviews until data saturation had been achieved and evaluated all transcripts for accuracy before we anonymized the data.RESULTS: Two focus groups consisting of 4 participants per group identified 4 distinct themes: (1) impact on oral health and function, (2) social isolation and withdrawal, (3) frustration with dry mouth management, and (4) limited knowledge of the medical community and lack of understanding of family and friends.CONCLUSIONS: The diversity of self-reported outcomes and the complexity of patient perceptions identified in our work may represent additional barriers to successful dry mouth management that should be considered in the design of future clinical trials.

AB - OBJECTIVE: We conducted a qualitative study of patients' perspectives on dry mouth outcomes to explore their personal experiences and investigate which outcomes are most important to them. This work was part of the WONDER initiative (World Workshop on Oral Medicine Outcomes Initiative for the Direction of Research) exploring Core Outcome Measures in Effectiveness Trials.STUDY DESIGN: Using a study-specific topic guide, we conducted digitally recorded, semi-structured interviews of focus groups of patients with dry mouth secondary to Sjögren syndrome and head and neck radiotherapy. We conducted interviews until data saturation had been achieved and evaluated all transcripts for accuracy before we anonymized the data.RESULTS: Two focus groups consisting of 4 participants per group identified 4 distinct themes: (1) impact on oral health and function, (2) social isolation and withdrawal, (3) frustration with dry mouth management, and (4) limited knowledge of the medical community and lack of understanding of family and friends.CONCLUSIONS: The diversity of self-reported outcomes and the complexity of patient perceptions identified in our work may represent additional barriers to successful dry mouth management that should be considered in the design of future clinical trials.

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KW - Xerostomia/therapy

KW - Sjogren's Syndrome

KW - Qualitative Research

KW - Patients

KW - Outcome Assessment, Health Care

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U2 - 10.1016/j.oooo.2023.01.015

DO - 10.1016/j.oooo.2023.01.015

M3 - Journal article

C2 - 37045699

SN - 2212-4411

VL - 135

SP - 876

EP - 884

JO - Oral surgery, oral medicine, oral pathology and oral radiology

JF - Oral surgery, oral medicine, oral pathology and oral radiology

IS - 6

ER -

World Workshop on Oral Medicine VIII: Development of a core outcome set for dry mouth: the patient perspective

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