Loss to Follow-Up and Transition Regret
Examining 27 studies used in a 2021 meta-analysis on post-surgical regret
About a month ago, I created a Twitter thread examining loss to follow-up in 27 studies that were used for a 2021 meta-analysis on post-surgical regret in transition-related medicine.1 It was a well-received thread, so here’s the Substack version of it.
Edit (June 27, 2023): Added length of time to follow-up for each study. Time until experiencing regret differs widely. One study found the average time to regret was 130 months (just over 10 years).2 Some studies on detransition suggest females tend to detransition 2-5 years after starting transition with males detransitioning 5-7 years after starting.34 This is in no way universal, though (e.g., I’m a female who detransitioned after 10 years.)
What is “loss to follow-up,” and why is it significant?
“Loss to follow-up” describes a situation in which researchers lose contact with their subjects, resulting in missing information.5 If too many participants in a study drop out or are unable to be contacted, the internal validity of the study is threatened (i.e., the observed results may not represent the truth of the population being studied6).
In particular, it introduces the possibility of attrition bias. It depends on why people refuse to participate, decide to leave, or why they cannot be contacted, but sometimes those who are lost to follow-up all refuse to participate for similar reasons.
In one study examining detransition, 76% of respondents did not inform their health care professionals that they were detransitioning.7 There is a lot of shame around transition regret. It stands to reason that regret might not be so low if loss to follow-up is so high.
The rate of transition regret is frequently compared to regret for other routine surgeries. I personally hold that an abnormally low regret rate for experimental surgeries that have no consistent standards of care, and which often leave body parts partially or completely nonfunctional, is actually a red flag, not a green one.
Of relevance, many studies on transition satisfaction also have the reverse problem (self-selection bias). The results of these studies are heavily based on self-reported information from self-selected participants, and people who are motivated to participate in studies are generally different than those in the same population who choose not to.
Some have suggested that <5% loss leads to little bias, while >20% poses serious threats to validity. This may be a good rule of thumb, but keep in mind that even small proportions of patients lost to follow-up can cause significant bias. One way to determine if loss to follow-up can seriously affect results is to assume a worst-case scenario with the missing data and look to see if the results would change.8
In this situation, the “worst-case scenario” is that 100% of those lost to follow-up experience regret, making the regret rate much higher than it appears to be. I think it’s unlikely, but it’s entirely possible. We just don’t know.
134 patients underwent surgery (2 dead)
111 participants, 4 expressed regrets
Regret rate of sample: 3.6%
Loss to follow-up: 15.9%
Time to follow-up: mean = 4.4 years, range = 1 year to 13.6 years
Blanchard, R., Steiner, B. W., Clemmensen, L. H., & Dickey, R. (1989). Prediction of Regrets in Postoperative Transsexuals. In The Canadian Journal of Psychiatry (Vol. 34, Issue 1, pp. 43–45). SAGE Publications. doi:10.1177/070674378903400111
67 patients underwent surgery
55 participants, 1 expressed regrets
Regret rate of sample: 1.8%
Loss to follow-up: 17.9%
Time to follow-up: mean = 2.3 years, range = 2 months to 6.3 years
Bouman, F. G. (1988). Sex Reassignment Surgery in Male to Female Transsexuals. In Annals of Plastic Surgery (Vol. 21, Issue 6, pp. 526–531). Ovid Technologies (Wolters Kluwer Health). doi:10.1097/00000637-198812000-00006
22 patients underwent surgery
19 participants, 0 expressed regrets
2 refused, 1 non-responsive
Regret rate of sample: 0%
Loss to follow-up: 13.6%
Time to follow-up: mean = 2.6 years, range = 1 year to 5 years
Cohen-Kettenis, P. T., & Van Goozen, S. H. M. (1997). Sex Reassignment of Adolescent Transsexuals: A Follow-up Study. In Journal of the American Academy of Child & Adolescent Psychiatry (Vol. 36, Issue 2, pp. 263–271). Elsevier BV. doi:10.1097/00004583-199702000-00017
107 patients underwent surgery
62 participants, 2 expressed regrets
15 refused, 30 non-responsive
Regret rate of sample: 3.2%
Loss to follow-up: 42.1%
Time to follow-up: mean = 4.1 years for males, 7.6 years for females
De Cuypere, G., Elaut, E., Heylens, G., Van Maele, G., Selvaggi, G., T’Sjoen, G., Rubens, R., Hoebeke, P., & Monstrey, S. (2006). Long-term follow-up: psychosocial outcome of Belgian transsexuals after sex reassignment surgery. In Sexologies (Vol. 15, Issue 2, pp. 126–133). Elsevier BV. doi:10.1016/j.sexol.2006.04.002
25 participants chosen by random selection of former patients, 0 expressed regrets
* Limitation: only patients "able and inclined to present to our clinic were evaluated."
Time to follow-up was different for three kinds of phalloplasty surgeries:
* suprapubic phalloplasty: mean = 2.23 years
* radial artery forearm-flap phalloplasty without cutaneous nerve to clitoral nerve anastomosis: mean = 6.80 years
* radial artery forearm-flap phalloplasty with cutaneous nerve to clitoral nerve anastomosis: mean = 2.24 years
Garcia, M., Christopher, N., Luca, F., Spilotros, M., & Ralph, D. (2014). Overall satisfaction, sexual function, and the durability of neophallus dimensions following staged female to male genital gender confirming surgery: the Institute of Urology, London U.K. experience. In Translational Andrology And Urology (Vol. 3, Issue 2, pp. 156-162). doi:10.3978/j.issn.2223-4683.2014.04.10
163 patients underwent surgery
139 participants, 8 expressed regrets
24 refused
Regret rate of sample: 5.8%
Loss to follow-up: 14.7%
Time to follow-up: range = 12 months to 18 months
Imbimbo, C., Verze, P., Palmieri, A., Longo, N., Fusco, F., Arcaniolo, D., & Mirone, V. (2009). Original Research—Intersex and Gender Identity Disorders: A Report from a Single Institute’s 14-Year Experience in Treatment of Male-to-Female Transsexuals. In The Journal of Sexual Medicine (Vol. 6, Issue 10, pp. 2736–2745). Oxford University Press (OUP). doi:10.1111/j.1743-6109.2009.01379.x
16 patients underwent surgery
14 participants, 1 expressed regrets
2 non-responsive
Regret rate of sample: 7.1%
Loss to follow-up: 12.5%
Time to follow-up: mean = 8.7 months, range = 2 months to 18 months
Jiang, D., Witten, J., Berli, J., & Dugi, D., III. (2018). Does Depth Matter? Factors Affecting Choice of Vulvoplasty Over Vaginoplasty as Gender-Affirming Genital Surgery for Transgender Women. In The Journal of Sexual Medicine (Vol. 15, Issue 6, pp. 902–906). Oxford University Press (OUP). doi:10.1016/j.jsxm.2018.03.085
49 patients underwent surgery
33 participants (32 SRS, 1 mastectomy), 0 expressed regrets
1 dead (from surgery complications), 15 non-responsive/refused
Regret rate of sample: 0%
Loss to follow-up: 30.6%
Time to follow-up: mean = 9 years, criterion = “5 or more years in the process or 2 or more years after completed sex reassignment surgery”
Johansson, A., Sundbom, E., Höjerback, T., & Bodlund, O. (2009). A Five-Year Follow-Up Study of Swedish Adults with Gender Identity Disorder. In Archives of Sexual Behavior (Vol. 39, Issue 6, pp. 1429–1437). Springer Science and Business Media LLC. doi:10.1007/s10508-009-9551-1
66 patients underwent surgery
31 participants, 0 expressed regrets
Regret rate of sample: 0%
Loss to follow-up: 53%
Time to follow-up: criterion = more than 6 months
Krege, S., Bex, A., Lümmen, G., & Rübben, H. (2001). Male-to-female transsexualism: a technique, results and long-term follow-up in 66 patients. In BJU International (Vol. 88, Issue 4, pp. 396–402). Wiley. doi:10.1046/j.1464-410x.2001.02323.x
Based on what I'm looking at, this study is either the wrong citation or there have been some major errors with interpreting it.
The meta-analysis claims "Kuiper et al followed 1100 transgender subjects that underwent GAS." However, the citation appears to be a qualitative study that recruited ten participants with regret (rather than following up with a sample size of 1100).
Kuiper et al, 1998, shows the mean age of the 10 participants as 46.4 -- which is also what is recorded as the mean age in the meta-analysis chart (for a sample size of 1100). This appears to be in error.
The meta-analysis reads “ten experienced regret (9 transmasculine and 1 transfemenine)." This is backwards based on the original citation. It's 9 transfeminine (i.e., "MTF") and 1 transmasculine (i.e., "FTM").
"The overall prevalence of regret after GAS in this study was of 0.9%." The claim that 10 of 1100 regretted surgery is being used as a major point in this meta-analysis. It is reflected nowhere in the citation.
If I'm correct, this is a massive flaw in this paper.
Kuiper, A. & Cohen-Kettenis, P. (1998). Gender Role Reversal among Postoperative Transsexuals. In International Journal of Transgenderism (Vol 23, Issue 2). https://www.researchgate.net/publication/270273121_Gender_Role_Reversal_among_Postoperative_Transsexuals
727 patients underwent surgery
307 with unknown/invalid address, 3 dead, 62 refused, 120 non-responsive, 3 ineligible
232 participants, 15 expressed regrets
Regret rate of sample: 6.5%
Loss to follow-up: 67.7%
Time to follow-up: criterion = “at least 1-year postoperative”
Lawrence, A. A. (2003). In Archives of Sexual Behavior (Vol. 32, Issue 4, pp. 299–315). Springer Science and Business Media LLC. doi:10.1023/a:1024086814364
30 patients underwent surgery
7 lost to follow-up, 4 ineligible
19 participants, 0 expressed regrets
Regret rate of sample: 0%
Loss to follow-up: 23.3%
Time to follow-up: mean = 24.9 months, range = 1 year to 2.5 years
Lobato, M. I. I., Koff, W. J., Manenti, C., Seger, D. da F., Salvador, J., da Graça Borges Fortes, M., Petry, A. R., Silveira, E., & Henriques, A. A. (2006). Follow-Up of Sex Reassignment Surgery in Transsexuals: A Brazilian Cohort. In Archives of Sexual Behavior (Vol. 35, Issue 6, pp. 711–715). Springer Science and Business Media LLC. doi:10.1007/s10508-006-9074-y
17 patients underwent surgery
12 participants, 0 expressed regrets
3 unknown addresses
Regret rate of sample: 0%
Loss to follow-up: 29.4%
Time to follow-up: mean = 32 months, range = 8 months to 5 years
Nelson, L., Whallett, E. J., & McGregor, J. C. (2009). Transgender patient satisfaction following reduction mammaplasty. In Journal of Plastic, Reconstructive & Aesthetic Surgery (Vol. 62, Issue 3, pp. 331–334). Elsevier BV. doi:10.1016/j.bjps.2007.10.049
93 patients underwent surgery
68 participants, 1 expressed regrets
2 refused, 24 non-responsive
Regret rate of sample: 1.5%
Loss to follow-up: 28%
Time to follow-up: range = less than 1 year to 5 years (29% less than 1 year, 29% 1 year, 28% 2 years, 14% more than 2 years)
Olson-Kennedy, J., Warus, J., Okonta, V., Belzer, M., & Clark, L. F. (2018). Chest Reconstruction and Chest Dysphoria in Transmasculine Minors and Young Adults. In JAMA Pediatrics (Vol. 172, Issue 5, p. 431). American Medical Association (AMA). doi:10.1001/jamapediatrics.2017.5440
121 patients underwent surgery
47 participants, 0 expressed regrets
38 unknown addresses, 14 refused, 22 non-responsive
Regret rate of sample: 0%
Loss to follow-up: 61.2%
Time to follow-up: mean = 19 months, range = 2 months to 58 months (4.8 years)
Papadopulos, N. A., Lellé, J.-D., Zavlin, D., Herschbach, P., Henrich, G., Kovacs, L., Ehrenberger, B., Kluger, A.-K., Machens, H.-G., & Schaff, J. (2017). Quality of Life and Patient Satisfaction Following Male-to-Female Sex Reassignment Surgery. In The Journal of Sexual Medicine (Vol. 14, Issue 5, pp. 721–730). Oxford University Press (OUP). doi:10.1016/j.jsxm.2017.01.022
297 patients underwent surgery, 3 expressed regrets (1.01%)
* I think this is retrospective. It's not clear whether the author actually followed up with his patients for this study to ask each of them about regrets.
Time to follow-up: range = 1 year to 29 years
Pfafflin, F. (1993). Regrets After Sex Reassignment Surgery. In Journal of Psychology & Human Sexuality (Vol. 5, Issue 4, pp. 69–85). Informa UK Limited. doi:10.1300/j056v05n04_05
47 (eligible) patients underwent surgery
28 participants, 0 expressed regrets
16 non-responsive, 3 dead
Regret rate: 0%
Loss to follow-up: 36.4%
Time to follow-up: criterion = 3 years
Rehman, J., Lazer, S., Benet, A. E., Schaefer, L. C., & Melman, A. (1999). In Archives of Sexual Behavior (Vol. 28, Issue 1, pp. 71–89). Springer Science and Business Media LLC. doi:10.1023/a:1018745706354
20 patients underwent surgery
20 participants, 0 expressed regrets
Regret rate: 0%
Loss to follow-up: 0%
Time to follow-up: mean = 1.3 years, range = 1 year to 4 years
Smith, Y. L. S., Van Goozen, S. H. M., & Cohen-Kettenis, P. T. (2001). Adolescents With Gender Identity Disorder Who Were Accepted or Rejected for Sex Reassignment Surgery: A Prospective Follow-up Study. In Journal of the American Academy of Child & Adolescent Psychiatry (Vol. 40, Issue 4, pp. 472–481). Elsevier BV. doi:10.1097/00004583-200104000-00017
19 patients underwent surgery
8 participants, 0 expressed regrets
* The meta-analysis counts all 19 as the sample. However, only 8 were asked about regrets (5-year follow-up).
Regret rate: 0%
Loss to follow-up: 42%
Time to follow-up: criterion = at least 5 years (for satisfaction questionnaire)
Song, C., Wong, M., Wong, C.-H., & Ong, Y.-S. (2010). Modifications of the Radial Forearm Flap Phalloplasty for Female-to-Male Gender Reassignment. In Journal of Reconstructive Microsurgery (Vol. 27, Issue 02, pp. 115–120). Georg Thieme Verlag KG. doi:10.1055/s-0030-1268210
546 eligible patients, 201 responded
136 postsurgical participants
Regret rate of sample: 5.9%
Loss to follow-up: 63.1%*
* Unsure about the calculation of loss to follow-up; not all patients were postsurgical. Also: the meta-analysis says only two had regrets, but the study says eight did.
Time to follow-up: range = 4 to 6 years after first clinical contact
van de Grift, T. C., Elaut, E., Cerwenka, S. C., Cohen-Kettenis, P. T., & Kreukels, B. P. C. (2017). Surgical Satisfaction, Quality of Life, and Their Association After Gender-Affirming Surgery: A Follow-up Study. In Journal of Sex & Marital Therapy (Vol. 44, Issue 2, pp. 138–148). Informa UK Limited. doi:10.1080/0092623x.2017.1326190
4863 patients underwent surgery, 14 expressed regrets
* This is a retrospective study (i.e., the authors looked at medical records and did not ask patients directly if they experienced regret).
Regret rate of sample: 0.3%
Wiepjes, C. M., Nota, N. M., de Blok, C. J. M., Klaver, M., de Vries, A. L. C., Wensing-Kruger, S. A., de Jongh, R. T., Bouman, M.-B., Steensma, T. D., Cohen-Kettenis, P., Gooren, L. J. G., Kreukels, B. P. C., & den Heijer, M. (2018). The Amsterdam Cohort of Gender Dysphoria Study (1972–2015): Trends in Prevalence, Treatment, and Regrets. In The Journal of Sexual Medicine (Vol. 15, Issue 4, pp. 582–590). Oxford University Press (OUP). doi:10.1016/j.jsxm.2018.01.016
49 patients underwent surgery
40 participants, 1 expressed regrets
Regret rate of sample: 2.5%
Loss to follow-up: 16.3%
Time to follow-up: mean = 11.3 months (second questionnaire sent 6 months after second stage of SRS)
Zavlin, D., Schaff, J., Lellé, J.-D., Jubbal, K. T., Herschbach, P., Henrich, G., Ehrenberger, B., Kovacs, L., Machens, H.-G., & Papadopulos, N. A. (2017). Male-to-Female Sex Reassignment Surgery using the Combined Vaginoplasty Technique: Satisfaction of Transgender Patients with Aesthetic, Functional, and Sexual Outcomes. In Aesthetic Plastic Surgery (Vol. 42, Issue 1, pp. 178–187). Springer Science and Business Media LLC. doi:10.1007/s00266-017-1003-z
218 eligible patients, 55 underwent surgery, 3 regret SRS, 1 HRT
* This is a retrospective study (i.e., the authors looked at medical records and did not ask patients directly if they experienced regret).
Regret rate of sample: 1.8% overall, 5.5% postsurgery
Judge, C., O’Donovan, C., Callaghan, G., Gaoatswe, G., & O’Shea, D. (2014). Gender Dysphoria — Prevalence and Co-Morbidities in an Irish Adult Population. In Frontiers in Endocrinology (Vol. 5). Frontiers Media SA. doi:10.3389/fendo.2014.00087
118 eligible patients, 0 expressed regrets
* This is a retrospective study (i.e., the authors looked at medical records and did not ask patients directly if they experienced regret).
Regret rate of sample: 0%
Vujovic, S., Popovic, S., Sbutega-Milosevic, G., Djordjevic, M., & Gooren, L. (2009). Transsexualism in Serbia: A Twenty-Year Follow-Up Study. In The Journal of Sexual Medicine (Vol. 6, Issue 4, pp. 1018–1023). Oxford University Press (OUP). doi:10.1111/j.1743-6109.2008.00799.x
70 patients underwent surgery
50 participants, 2 expressed regrets
17 non-responsive, 3 refused
Regret rate of sample: 4%
Loss to follow-up: 28.6%
Time to follow-up: mean = 75.46 months (6.3 years), criterion = more than 6 months
Weyers, S., Elaut, E., De Sutter, P., Gerris, J., T’Sjoen, G., Heylens, G., De Cuypere, G., & Verstraelen, H. (2009). Long-term Assessment of the Physical, Mental, and Sexual Health among Transsexual Women. In The Journal of Sexual Medicine (Vol. 6, Issue 3, pp. 752–760). Oxford University Press (OUP). doi:10.1111/j.1743-6109.2008.01082.x
81 patients underwent surgery
58 participants, 2 expressed regrets
Regret rate of sample: 3.4%
Loss to follow-up: 28.4%
Time to follow-up: criterion = at least 3 months postoperative, range = less than 1 year to more than 6 years (57% less than 1 year, 22% between 1-2 years, 21% more than 2 years)
Poudrier, G., Nolan, I. T., Cook, T. E., Saia, W., Motosko, C. C., Stranix, J. T., Thomson, J. E., Gothard, M. D., & Hazen, A. (2019). Assessing Quality of Life and Patient-Reported Satisfaction with Masculinizing Top Surgery. In Plastic and Reconstructive Surgery (Vol. 143, Issue 1, pp. 272–279). Ovid Technologies (Wolters Kluwer Health). doi:10.1097/prs.0000000000005113
213 patients, 3.8% expressed regrets
* This is a retrospective study. The authors looked at applications for sex reassignment in Sweden and noted how many applied for a reversal. That's what they counted as “regret.”
Landén, M., Wålinder, J., Hambert, G., & Lundström, B. (1998). Factors predictive of regret in sex reassignment. In Acta Psychiatrica Scandinavica (Vol. 97, Issue 4, pp. 284–289). Wiley. doi:10.1111/j.1600-0447.1998.tb10001.x
Other factors that may affect the “regret” rate:
safeguards in place at time of transition
age at time of transition
how long after surgery the follow-up takes place
I didn’t set out specifically to criticize this particular paper. (It acknowledges there is “high subjectivity” in the assessment of regret, “moderate-to-high risk of bias” in some studies, that patients “might restrain from expressing regrets due to fear of being judged,” and that the “real prevalence of ‘true’ regret” may be “underestimated.”) I just wanted a list of the most common studies of transition regret so I could examine loss to follow-up in them.
I’m pointing out a pattern, nothing more. We need more data to understand what the pattern means.