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Adolescents’ polycystic ovary syndrome health-related quality of life questionnaire (APQ-20): development and psychometric properties

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Abstract

Several health-related quality of life (HRQOL) questionnaires for adults with polycystic ovary syndrome (PCOS) have been developed so far. However, an adolescent-specific HRQOL questionnaire for PCOS patients is still lacking. Hence, this study aimed to develop and validate a questionnaire to assess HRQOL in adolescents with PCOS. This mixed-method study was conducted in Tehran, Iran, from 2018 to 2020. The qualitative phase was conducted on 18 target participants, and in the quantitative phase, exploratory factor analysis (EFA) was performed on 200 adolescents with PCOS and confirmatory factor analyses (CFA) on the other 200 ones. The item-developing process was finalized with 77 questions. Concerning the optimum cutoff of content validity ratio, content validity index, kappa statistic coefficient, and item impact score, a draft with 55 items was finalized. Then, piloting scale was performed on 40 participants and considering the interitem correlation < 0.3, fifteen items were excluded. Based on the EFA, 20 items in six components (emotion and mood, loss of attractiveness due to the hirsutism, loss of attractiveness due to the acne, self-care, support, and menstrual cycle problem) that explain 60.3% of the variance were extracted. The CFA with acceptable values of goodness-of-fit statistics supports this construct validity. Results of reliability, floor, and ceiling effect were acceptable.

  Conclusion: Our study showed that the short questionnaire of APQ-20 is valid and reliable for assessment of the HRQOL of adolescents with PCOS. Further studies are needed to assess the feasibility and reliability of APQ-20 for assessing the HRQOL of adolescents with PCOS. It constitutes a significant step forward in the measurement of HRQOL of adolescents with PCOS.

What is Known:

• There is no disease-specific questionnaire for assessment of the health-related quality of life (HRQOL) of adolescents with polycystic ovary syndrome (PCOS).

What is New:

• The short questionnaire of APQ-20 is easy to use, valid, and reliable for the assessment of the HRQOL of adolescents with PCOS.

• APQ-20 constitutes a significant step forward in the measurement of HRQOL of adolescents with PCOS.

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Data availability

The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

Abbreviations

PCOS:

Polycystic ovary syndrome

HRQOL:

Health-related quality of life

SF-12:

12-Item Short Form Survey

EFA:

Exploratory factor analysis

CFA:

Confirmatory factor analyses

QOL:

Quality of life

HA:

Hyperandrogenism;

KMO:

Kaiser–Meyer–Olkin

CVR:

Content validity ratio

CVI:

Content validity index

S-CVI/UA:

Universal agreement

Pc:

Probability of chance agreement

GH:

General health

PF:

Physical functioning

RP:

Role physical

BP:

Body pain

VT:

Vitality

SF:

Social functioning

RE:

Role emotional

MH:

Mental health

Chi Sq:

Chi square (χ2)

df:

Degrees of freedom

CMIN/DF:

The χ2/degrees of freedom ratio

SRMR:

Standardized root-mean-square residual

CFI:

Comparative fit index

GFI:

Goodness-of-fit index

NFI:

Normed fit index

RMSEA:

Root mean square error of approximation

PNFI:

Parsimonious normed fit index

PCFI:

Parsimonious comparative fit index

ICC:

Intraclass correlation coefficients

BMI:

Body mass index

PCOSQ:

Polycystic ovary syndrome questionnaire

MPCOSQ:

Modified the PCOSQ

PCOSQOL:

Polycystic ovary syndrome quality of life scale

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Acknowledgements

We thank all adolescents for their participation.

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Authors and Affiliations

  1. Reproductive Endocrinology Research Center, Research Institute for Endocrine Sciences, Shahid Beheshti University of Medical Sciences, Tehran, Iran

    Marzieh Saei Ghare Naz, Ali Aflatounian & Fahimeh Ramezani Tehrani

  2. Midwifery and Reproductive Health Research Center, Department of Midwifery and Reproductive Health, Shahid Beheshti University of Medical Sciences, Tehran, Iran

    Giti Ozgoli

  3. Department of Nursing, Faculty of Medical Sciences, Tarbiat Modares University, Tehran, Iran

    Fazlollah Ahmadi

  4. Department of Biostatistics, School of Allied Medical Sciences, Shahid Beheshti University of Medical Sciences, Tehran, Iran

    Hamid Alavi Majd

  5. School of Women’s & Children’s Health, University of New South Wales Sydney, Sydney, NSW 2052, Australia

    Ali Aflatounian

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Contributions

Authors’ contributions

Conceptualization and project administration: MSG, FRT, GO. Methodology, data curtain, software, formal analysis: MSG, FRT, GO, HAM, FA. Original draft preparation, review and editing: MSG, FRT, GO, AA, FA, HAM.

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Correspondence to Fahimeh Ramezani Tehrani.

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Ethical approval

This study was carried out in accordance with the Declaration of Helsinki. The research protocol was reviewed and confirmed by the ethics committee of the Research Institute for Endocrine Sciences, Shahid Beheshti University of Medical Sciences, Tehran, Iran (ethical code: IR.SBMU.ENDOCRINE.REC.1398.095).

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Participants and their parents or legal guardians were informed about the research objectives and gave voluntary informed written consent. Any participant had the unconditional and absolute right to suspend or cancel her participation in the study at any time for any reason. The personal identifiers of particpants were not stored.

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This is not applicable.

Competing interests

This study is a part of a PhD dissertation of first author that approved by Reproductive Endocrinology Research Center, Research Institute for Endocrine Sciences, Shahid Beheshti University of Medical Sciences, Tehran. Iran. The authors declare no competing interests.

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Saei Ghare Naz, M., Ozgoli, G., Ahmadi, F. et al. Adolescents’ polycystic ovary syndrome health-related quality of life questionnaire (APQ-20): development and psychometric properties. Eur J Pediatr 182, 2393–2407 (2023). https://doi.org/10.1007/s00431-023-04875-8

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