Breast satisfaction in adult women with Turner Syndrome: – an international survey employing the BREAST-Q questionnaire

Jan Idkowiak; Arlene Smyth; Lily Mundy; Amy Wanaguru; Helena Gleeson; Wolfgang Högler

doi:10.1111/cen.14755

Breast satisfaction in adult women with Turner Syndrome: – an international survey employing the BREAST-Q questionnaire

Jan Idkowiak, Arlene Smyth, Lily Mundy, Amy Wanaguru, Helena Gleeson, Wolfgang Högler

Metabolism and Systems Science

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Abstract

Objective: Turner syndrome (TS) is associated with short stature, delayed puberty, primary ovarian insufficiency, and other features. Most girls with TS require oestrogen replacement for pubertal induction. There is paucity of data in adult TS on pubertal outcomes, including breast satisfaction. Here, we assess breast satisfaction in TS with the BREAST-Q questionnaire, a well-validated patient-related outcome measure (PROM).

Design: International survey distributed online through TS support groups.

Patients: Adult women aged 18–45 years with TS (self-reported).

Measurements: The questionnaire contained demographics, health history and the four domains of the BREAST-Q. BREAST-Q scores were matched on a one-to-one basis for age, body mass index (BMI) and educational background to a normative data set derived from the ‘Army of Women’, an online community of healthy volunteers.

Results: Of 97 total responses, 74 could be matched to the control cohort. Median age was 32 years (18–45 years) and 97% were White Caucasian. Median age at menarche was 15.5 years (12–34 years), 86% had received pubertal induction therapy as teenagers. We found significantly lower BREAST-Q scores in TS in the domains ‘Satisfaction with Breast’ (p = .021), ‘Psychosocial Wellbeing’ (p < .0001) and ‘Sexual Wellbeing’ (p < .0001). TS who had received oestrogen replacement therapy reported lower scores compared to TS who had not received oestrogen therapy (p < .0001). Lower BMI and previous growth hormone therapy were associated with lower breast satisfaction.

Conclusions: TS women who received oestrogen replacement for pubertal induction self-report lower breast satisfaction scores and late menarche, suggesting that type, mode of delivery, dose and timing of hormone supplements merit prospective study.

Original language	English
Pages (from-to)	1-9
Number of pages	9
Journal	Clinical Endocrinology
Early online date	17 May 2022
DOIs	https://doi.org/10.1111/cen.14755
Publication status	E-pub ahead of print - 17 May 2022

Bibliographical note

Funding Information:
We would like to thank Dr. Elena Tsangaris and Dr. Anne Klaassen, McMaster University, Hamilton, Canada, for their guidance to adapt the BREAST‐Q tool for our patient population through qualitative interviews. We would like to Dr. Peter Nightingale, University of Birmingham, to offer statistical advice. This study was supported by the Academy of Medical Sciences (Starter Grant for Clinical Lecturers SGL020/1013 to J. I.) and the National Institute of Health Research (NIHR) UK (Clinical Lectureship to J. I.). The views expressed in this publication are those of the author(s) and not necessarily those of the National Health Service, the National Institute for Health Research, or the Department of Health.

Publisher Copyright:
© 2022 The Authors. Clinical Endocrinology published by John Wiley & Sons Ltd.

Keywords

pubertal induction
patient-related outcome measures
PROM
quality of life

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10.1111/cen.14755Licence: Creative Commons: Attribution-NonCommercial (CC BY-NC)

IdkowiakJ2022BreastFinal published version, 1.16 MBLicence: Creative Commons: Attribution-NonCommercial (CC BY-NC)

Childhood Androgen Excess as a Forerunner of Metabolic Disease
Idkowiak, J.
THE ACADEMY OF MEDICAL SCIENCES
1/02/19 → 31/01/22
Project: Research

Cite this

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abstract = "Objective: Turner syndrome (TS) is associated with short stature, delayed puberty, primary ovarian insufficiency, and other features. Most girls with TS require oestrogen replacement for pubertal induction. There is paucity of data in adult TS on pubertal outcomes, including breast satisfaction. Here, we assess breast satisfaction in TS with the BREAST-Q questionnaire, a well-validated patient-related outcome measure (PROM).Design: International survey distributed online through TS support groups.Patients: Adult women aged 18–45 years with TS (self-reported).Measurements: The questionnaire contained demographics, health history and the four domains of the BREAST-Q. BREAST-Q scores were matched on a one-to-one basis for age, body mass index (BMI) and educational background to a normative data set derived from the {\textquoteleft}Army of Women{\textquoteright}, an online community of healthy volunteers.Results: Of 97 total responses, 74 could be matched to the control cohort. Median age was 32 years (18–45 years) and 97% were White Caucasian. Median age at menarche was 15.5 years (12–34 years), 86% had received pubertal induction therapy as teenagers. We found significantly lower BREAST-Q scores in TS in the domains {\textquoteleft}Satisfaction with Breast{\textquoteright} (p = .021), {\textquoteleft}Psychosocial Wellbeing{\textquoteright} (p < .0001) and {\textquoteleft}Sexual Wellbeing{\textquoteright} (p < .0001). TS who had received oestrogen replacement therapy reported lower scores compared to TS who had not received oestrogen therapy (p < .0001). Lower BMI and previous growth hormone therapy were associated with lower breast satisfaction.Conclusions: TS women who received oestrogen replacement for pubertal induction self-report lower breast satisfaction scores and late menarche, suggesting that type, mode of delivery, dose and timing of hormone supplements merit prospective study.",

keywords = "pubertal induction, patient-related outcome measures, PROM, quality of life",

author = "Jan Idkowiak and Arlene Smyth and Lily Mundy and Amy Wanaguru and Helena Gleeson and Wolfgang H{\"o}gler",

note = "Funding Information: We would like to thank Dr. Elena Tsangaris and Dr. Anne Klaassen, McMaster University, Hamilton, Canada, for their guidance to adapt the BREAST‐Q tool for our patient population through qualitative interviews. We would like to Dr. Peter Nightingale, University of Birmingham, to offer statistical advice. This study was supported by the Academy of Medical Sciences (Starter Grant for Clinical Lecturers SGL020/1013 to J. I.) and the National Institute of Health Research (NIHR) UK (Clinical Lectureship to J. I.). The views expressed in this publication are those of the author(s) and not necessarily those of the National Health Service, the National Institute for Health Research, or the Department of Health. Publisher Copyright: {\textcopyright} 2022 The Authors. Clinical Endocrinology published by John Wiley & Sons Ltd.",

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T1 - Breast satisfaction in adult women with Turner Syndrome

T2 - – an international survey employing the BREAST-Q questionnaire

AU - Idkowiak, Jan

AU - Smyth, Arlene

AU - Mundy, Lily

AU - Wanaguru, Amy

AU - Gleeson, Helena

AU - Högler, Wolfgang

N1 - Funding Information: We would like to thank Dr. Elena Tsangaris and Dr. Anne Klaassen, McMaster University, Hamilton, Canada, for their guidance to adapt the BREAST‐Q tool for our patient population through qualitative interviews. We would like to Dr. Peter Nightingale, University of Birmingham, to offer statistical advice. This study was supported by the Academy of Medical Sciences (Starter Grant for Clinical Lecturers SGL020/1013 to J. I.) and the National Institute of Health Research (NIHR) UK (Clinical Lectureship to J. I.). The views expressed in this publication are those of the author(s) and not necessarily those of the National Health Service, the National Institute for Health Research, or the Department of Health. Publisher Copyright: © 2022 The Authors. Clinical Endocrinology published by John Wiley & Sons Ltd.

PY - 2022/5/17

Y1 - 2022/5/17

N2 - Objective: Turner syndrome (TS) is associated with short stature, delayed puberty, primary ovarian insufficiency, and other features. Most girls with TS require oestrogen replacement for pubertal induction. There is paucity of data in adult TS on pubertal outcomes, including breast satisfaction. Here, we assess breast satisfaction in TS with the BREAST-Q questionnaire, a well-validated patient-related outcome measure (PROM).Design: International survey distributed online through TS support groups.Patients: Adult women aged 18–45 years with TS (self-reported).Measurements: The questionnaire contained demographics, health history and the four domains of the BREAST-Q. BREAST-Q scores were matched on a one-to-one basis for age, body mass index (BMI) and educational background to a normative data set derived from the ‘Army of Women’, an online community of healthy volunteers.Results: Of 97 total responses, 74 could be matched to the control cohort. Median age was 32 years (18–45 years) and 97% were White Caucasian. Median age at menarche was 15.5 years (12–34 years), 86% had received pubertal induction therapy as teenagers. We found significantly lower BREAST-Q scores in TS in the domains ‘Satisfaction with Breast’ (p = .021), ‘Psychosocial Wellbeing’ (p < .0001) and ‘Sexual Wellbeing’ (p < .0001). TS who had received oestrogen replacement therapy reported lower scores compared to TS who had not received oestrogen therapy (p < .0001). Lower BMI and previous growth hormone therapy were associated with lower breast satisfaction.Conclusions: TS women who received oestrogen replacement for pubertal induction self-report lower breast satisfaction scores and late menarche, suggesting that type, mode of delivery, dose and timing of hormone supplements merit prospective study.

AB - Objective: Turner syndrome (TS) is associated with short stature, delayed puberty, primary ovarian insufficiency, and other features. Most girls with TS require oestrogen replacement for pubertal induction. There is paucity of data in adult TS on pubertal outcomes, including breast satisfaction. Here, we assess breast satisfaction in TS with the BREAST-Q questionnaire, a well-validated patient-related outcome measure (PROM).Design: International survey distributed online through TS support groups.Patients: Adult women aged 18–45 years with TS (self-reported).Measurements: The questionnaire contained demographics, health history and the four domains of the BREAST-Q. BREAST-Q scores were matched on a one-to-one basis for age, body mass index (BMI) and educational background to a normative data set derived from the ‘Army of Women’, an online community of healthy volunteers.Results: Of 97 total responses, 74 could be matched to the control cohort. Median age was 32 years (18–45 years) and 97% were White Caucasian. Median age at menarche was 15.5 years (12–34 years), 86% had received pubertal induction therapy as teenagers. We found significantly lower BREAST-Q scores in TS in the domains ‘Satisfaction with Breast’ (p = .021), ‘Psychosocial Wellbeing’ (p < .0001) and ‘Sexual Wellbeing’ (p < .0001). TS who had received oestrogen replacement therapy reported lower scores compared to TS who had not received oestrogen therapy (p < .0001). Lower BMI and previous growth hormone therapy were associated with lower breast satisfaction.Conclusions: TS women who received oestrogen replacement for pubertal induction self-report lower breast satisfaction scores and late menarche, suggesting that type, mode of delivery, dose and timing of hormone supplements merit prospective study.

KW - pubertal induction

KW - patient-related outcome measures

KW - PROM

KW - quality of life

U2 - 10.1111/cen.14755

DO - 10.1111/cen.14755

M3 - Article

C2 - 35581594

SN - 0300-0664

SP - 1

EP - 9

JO - Clinical Endocrinology

JF - Clinical Endocrinology

ER -

Breast satisfaction in adult women with Turner Syndrome: – an international survey employing the BREAST-Q questionnaire

Abstract

Bibliographical note

Keywords

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Childhood Androgen Excess as a Forerunner of Metabolic Disease

Cite this