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Community Engagement and Patient-Centered Implementation of Patient-Reported Outcome Measures (PROMs) in Gender Affirming Surgery: a Systematic Review

  • Male and Female Surgical Interventions (CC Carson III and JP Selph, Section Editors)
  • Published:
  • volume 14, pages 17–29 (2022)
Current Sexual Health Reports Aims and scope Submit manuscript

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Abstract

Purpose of review

Analyze the utilization of patient-centered outcomes research (PCOR) methods in the literature containing patient-reported outcome measures (PROMs) for gender affirming surgery (GAS).

Recent findings

Multiple recent systematic reviews have demonstrated that the majority of PROMs used to assess GAS are either ad hoc measures never intended for validation or are neither specific to nor validated for the population or intervention being studied. This review builds on prior works with inclusion of articles related to facial and vocal GAS and presentation of PCOR recommendations and best practices based on review findings.

Summary

A systematic review of records in PubMed and Scopus using search terms related to GAS and PROMs yielded 652 total articles of which 158 were included in the final analysis. Just over half of included articles utilized validated PROMs, though only 38% of those articles utilized a PROM that had been validated in the TGNB population. Thirteen (8.2%) studies detailed the involvement of patients in PROM development as subjects, and only 4 (2.5%) utilized PCOR methods that engaged TGNB individuals as research stakeholders. Utilization of PCOR methods in research evaluating outcomes of GAS is exceedingly rare despite increasing use of PROMs over time. To collect data that are both accurate and meaningful to the TGNB population, PCOR methods must be adopted within this field.

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Fig. 1
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Availability of Data and Material

All material reviewed for this article is available within the academic publishing community.

Code Availability

See Appendix for final search strings utilized for review.

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Funding

This project was partially funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (EA-18835).

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Authors and Affiliations

  1. Department of Urology, Oregon Health and Science University, 3181 SW Sam Jackson Parkway Rd, Portland, OR, 97239, USA

    Emily K. Clennon, Leigh H. Martin, Craig Sineath & Geolani W. Dy

  2. Department of Surgery, Kaiser Permanente, Bellevue, WA, USA

    Sarah K. Fadich

  3. Library, Oregon Health and Science University, Portland, OR, USA

    Laura Zeigen

  4. Department of Urology, New York University Langone Health, New York, NY, USA

    Gaines Blasdel

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  1. Emily K. Clennon
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  2. Leigh H. Martin
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  4. Laura Zeigen
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  5. Gaines Blasdel
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  6. Craig Sineath
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  7. Geolani W. Dy
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Contributions

Study Conception and Design: Geolani Dy, Emily Clennon.

Article Collection: Emily Clennon, Laura Zeigen.

Article Screening: Emily Clennon, Leigh Martin.

Full Text Analysis: Emily Clennon, Leigh Martin, Sarah Fadich.

Data Analysis: Emily Clennon, Geolani Dy.

Manuscript Preparation: Emily Clennon, Craig Sineath, Gaines Blasdel, Geolani Dy.

Manuscript Review and Editing: Emily Clennon, Geolani Dy, Gaines Blasdel, Craig Sineath, Leigh Martin, Sarah Fadich.

Funding Acquisition and Project Supervision: Geolani Dy.

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Correspondence to Emily K. Clennon.

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This article is part of the Topical Collection on Male and Female Surgical Interventions

Appendix 1

Appendix 1

Final query strings by database.

PubMed Query

((transgender OR dysphoria OR transsexual) AND surgery AND (affirm* OR gender-affirm* OR gender confirm* OR gender-confirm* OR reassign* OR transsexual) AND ("patient reported outcome" OR "patient-reported outcome" OR satisfaction OR quality of life OR quality-of-life)) OR ((((((((((((((("Transgender Persons"[Mesh]) OR "Transsexualism"[Mesh]) OR "Gender Identity"[Mesh]) OR "Sexual and Gender Minorities"[Mesh]) OR "Gender Dysphoria"[Mesh]) OR (transgender[Title/Abstract])) OR (transsexual[Title/Abstract])) OR (gender identity[Title/Abstract])) OR (sexual minority[Title/Abstract])) OR (gender minority[Title/Abstract])) OR (sexual minorities[Title/Abstract])) OR (gender minorities[Title/Abstract])) OR (gender dysphoria[Title/Abstract])) AND (((((((("Sex Reassignment Surgery"[Mesh]) OR "Sex Reassignment Procedures"[Mesh]) OR "Health Services for Transgender Persons"[Mesh]) OR "Surgical Procedures, Operative"[Mesh]) OR (sex reassignment[Title/Abstract])) OR (surgery[Title/Abstract])) OR (surgical[Title/Abstract])) OR (health services[Title/Abstract]))) AND (((((("Patient Reported Outcome Measures"[Mesh]) OR "Patient Outcome Assessment"[Mesh]) OR (patient reported outcomes[Title/Abstract])) OR (patient outcome assessment[Title/Abstract])) OR (patient outcomes assessment[Title/Abstract])) OR (((quality of life[Title/Abstract]) OR (patient satisfaction[Title/Abstract])) OR (("Quality of Life"[Mesh]) OR "Patient Satisfaction"[Mesh])))).

Scopus Query

( TITLE-ABS-KEY ( transgender OR dysphoria OR transsexual OR "transgender persons" OR transsexualism OR "gender identity" OR "sexual and gender minorities" OR "gender dysphoria") AND TITLE-ABS-KEY ( ( surgery AND ( affirm* OR gender-affirm* OR gender AND confirm* OR gender-confirm* OR reassign* OR transsexual)) OR "sex reassignment") AND TITLE-ABS-KEY ( ( "patient reported outcome" OR "patient-reported outcome" OR "patient satisfaction" OR quality AND of AND life OR quality-of-life))).

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Clennon, E.K., Martin, L.H., Fadich, S.K. et al. Community Engagement and Patient-Centered Implementation of Patient-Reported Outcome Measures (PROMs) in Gender Affirming Surgery: a Systematic Review. Curr Sex Health Rep 14, 17–29 (2022). https://doi.org/10.1007/s11930-021-00323-6

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