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

Clennon, Emily K.; Martin, Leigh H.; Fadich, Sarah K.; Zeigen, Laura; Blasdel, Gaines; Sineath, R. Craig; Dy, Geolani W.

doi:10.1007/s11930-021-00323-6

Cited by 6 publications

(5 citation statements)

References 167 publications

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“…25,26 The lack of PROMs developed with transgender patient stakeholders who have lived experiences relevant to the outcomes measured limits the ability of these measures to accurately reflect the unique concerns, experiences, and outcomes pertinent to transgender individuals. 7,27 Additionally, the creation of PROMs with patient stakeholders can aid evaluating the accessibility of the PROM and reducing the burden placed on patients completing the measure(s). 28 An example of a PROM that could meet these needs is the GENDER-Q, which is currently being developed and may have utility in enhancing decision support.…”

Section: Wonder If My Dysphoria Is Strong Enough To Justify Going Thr...mentioning

confidence: 99%

Section: Introduction and Objectivesmentioning

confidence: 99%

“…As is true of many complex reconstructive surgical procedures, there is currently a lack of quality published patient-reported outcome measures (PROMs) to elucidate the extent and impact of MaPGAS genitourinary outcomes and complications. 7 Given the complexity of MaPGAS decision-making, it follows that many individuals would experience decisional conflict. Numerous prior studies have evaluated decisional conflict in patients considering reconstructive surgery, such as breast reconstruction after oncologic mastectomy, [8][9][10][11] yet few published studies from the United States have used validated measures to evaluate decisional uncertainty or conflict in individuals considering MaPGAS.…”

Section: Introduction and Objectivesmentioning

confidence: 99%

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Exploring Decisional Conflict Experienced by Individuals Considering Metoidioplasty and Phalloplasty Gender-affirming Surgery

Otto-Moudry,

Kinney,

Butcher

et al. 2024

Plastic and Reconstructive Surgery - Global Open

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Background: Metoidioplasty and phalloplasty gender-affirming surgery (MaPGAS) is increasingly performed and requires patients to make complex decisions that may lead to decisional uncertainty. This study aimed to evaluate decisional conflict in individuals considering MaPGAS. Methods: We administered a cross-sectional survey to adult participants assigned female sex at birth and considering MaPGAS, recruited via social media platforms and community health centers. We collected data on demographics, medical and surgical history, MaPGAS type considered, and the Decisional Conflict Scale (DCS). DCS scores range from 0 to 100 (>37.5 indicates greater decisional conflict). Demographic characteristics and DCS scores were compared between subgroups, using descriptive and chi-square statistics. Participants commented on MaPGAS uncertainty, and their comments were evaluated and thematically analyzed. Results: Responses from 264 participants were analyzed: mean age 29 years; 64% (n = 168) trans men, 80% (n = 210) White, 78% (n = 206) nonrural, 45% (n = 120) privately insured, 56% (n = 148) had 4 or more years of college, 23% (n = 84) considering metoidioplasty, 24% (n = 87) considering phalloplasty, and 26% (n = 93) considering metoidioplasty and phalloplasty. DCS total scores were significantly higher (39.8; P < 0.001) among those considering both MaPGAS options, as were mean ratings on the Uncertainty subscale [64.1 (SD 25.5; P < 0.001)]. Concerns surrounding complications were the top factor contributing to uncertainty and decisional conflict. Conclusions: In a cross-sectional national sample of individuals seeking MaPGAS, decisional uncertainty was the highest for those considering both MaPGAS options compared with metoidioplasty or phalloplasty alone. This suggests this cohort would benefit from focused decision support.

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Section: Wonder If My Dysphoria Is Strong Enough To Justify Going Thr...mentioning

confidence: 99%

Section: Introduction and Objectivesmentioning

confidence: 99%

Section: Introduction and Objectivesmentioning

confidence: 99%

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Exploring Decisional Conflict Experienced by Individuals Considering Metoidioplasty and Phalloplasty Gender-affirming Surgery

Otto-Moudry,

Kinney,

Butcher

et al. 2024

Plastic and Reconstructive Surgery - Global Open

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“…PROMs are critical in measuring patient quality of life and function-specific outcomes (e.g., sexual health outcomes, urinary outcomes, aesthetic outcomes) [12]. GGAS PROMs are an emerging field, as there are currently no GGAS PROMs which have undergone rigorous content validation to date [9,[12][13][14]. The GENDER-Q team of international experts are undertaking a robust, patient-centered process of content validation and statistical reliability of PROMs for GGAS [15], which are expected to be released for wide use in the coming years.…”

Section: Shared Decision-makingmentioning

confidence: 99%

Patient education and surgical decision-making in genital gender-affirming surgery

Arteaga,

Dryden,

Blasdel

2024

Current Opinion in Urology

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Purpose of review An update on the latest advances in surgical decision-making for genital gender-affirming surgery (GGAS), with an emphasis on patient education from three perspectives: surgeon-team perspectives, patient perspectives, and educational resources available to the public on social media. Recent findings Transgender, nonbinary, and other culturally specific gender identities (TGNB) patients overwhelmingly desire an active role in the decision-making process. New developments in patient-engagement strategies help mitigate the harm of historical gatekeeping practices by centering the needs and experiences of TGNB patients to create a prioritized research agenda for GGAS effectiveness. Patient educational resources play an integral role in navigating the complexity of GGAS-surgical options, informing patients of the technical and logistical knowledge required for GGAS surgical decision-making. Peer support experiences are a critical facilitator for patient surgical decision-making, both for informed decision-making and for psychosocial support. Summary Several developments have been made in examining shared-decision making, educational resources from the perspectives of both the surgical team and patients, and the role of social media in GGAS. Surgeons must continue to initiate robust conversations of patient goals, GGAS surgical options, the possible risk and benefit profiles of each option, and aftercare requirements, all while prioritizing patient-engagement strategies.

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“…6 The low quality of the current literature has been described, with lack of validated patient-reported outcomes and community-led direction. [7][8][9][10] For outcomes to improve, we must both look forward to future methodologies and examine current practices. Surgeon-observed and reported complications have large "blind spots," which call into question the application of findings to practice.…”

mentioning

confidence: 99%

“Urinary Reconstruction in Genital Gender-Affirming Surgery: Checking Our Surgical Complication Blind Spots”

Blasdel

Nikolavsky

et al. 2023

Plastic &Amp; Reconstructive Surgery

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Genital gender-affirming surgery (GGAS) to treat gender incongruence 1 related to genital configuration is based on individual goals and risk tolerance. In gender-affirming penile reconstruction, the primary procedure involves phalloplasty or a metoidioplasty, 2 and additional components with urologic implications Background: Urologic complications in genital gender-affirming surgery are imperfectly measured, with existing evidence limited by "blind spots" that will not be resolved through implementation of patient-reported outcomes alone. Some blind spots are expected in a surgical field with rapidly expanding techniques, and they may be exacerbated by factors related to transgender health. Methods: The authors provide a narrative review of systematic reviews published in the past decade to describe the current options for genital genderaffirming surgery and surgeon-reported complications, as well as contrasting peer-reviewed sources with data not reported by the primary surgeon. In combination with expert opinion, these findings help estimate complication rates. Results: Eight systematic reviews describe complications in patients undergoing vaginoplasty, including 5% to 16.3% mean incidence of meatal stenosis and 7% to 14.3% mean incidence of vaginal stenosis. Compared with surgeonreported cohorts, patients undergoing vaginoplasty or vulvoplasty in other reports had higher rates of voiding dysfunction (47% to 66% versus 5.6% to 33%), incontinence (23% to 33% versus 4% to 19.3%), or misdirected urinary stream (33% to 55% versus 9.5% to 33%). Outcomes in six reviews of phalloplasty and metoidioplasty included urinary fistula (14% to 25%), urethral stricture or meatal stenosis (8% to 12.2%), and ability to stand to void (73% to 99%). Higher rates of fistula (39.5% to 56.4%) and stricture (31.8% to 65.5%) were observed in alternate cohorts, along with previously unreported complications such as vaginal remnant requiring reoperation. Conclusions: The literature does not completely describe urologic complications of genital gender-affirming surgery. In addition to standardized, robustly validated patient-reported outcome measures, future research on surgeonreported complications would benefit from using the IDEAL (idea, development, exploration, assessment, and long-term study) framework for surgical innovation.

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

Cited by 6 publications

References 167 publications

Exploring Decisional Conflict Experienced by Individuals Considering Metoidioplasty and Phalloplasty Gender-affirming Surgery

Exploring Decisional Conflict Experienced by Individuals Considering Metoidioplasty and Phalloplasty Gender-affirming Surgery

Patient education and surgical decision-making in genital gender-affirming surgery

“Urinary Reconstruction in Genital Gender-Affirming Surgery: Checking Our Surgical Complication Blind Spots”

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