This was cross-sectional questionnaire-based study. The study was registered in ClinicalTrials.gov (NCT04901819).

Individuals with ARM managed at the Unit of Pediatric Surgery at Karolinska University Hospital, Stockholm, Sweden. In 2024, Sweden had a population of roughly 10.6 million persons.

All surgically managed females with ARM at our institution between 1994 and 2003 were eligible for the study. A database of identified eligible patients was created. The included ARM subtypes were perineal fistulas, vestibular fistulas, recto-vaginal fistulas as well as atresias without fistulas. Deceased patients, patients with cloacal malformations and patients without surgical interventions were excluded from the study. Furthermore, patients with Currarino syndrome, Down’s syndrome and patients with major intellectual disabilities were excluded from the study. After informed consent, participants were asked to answer a composite questionnaire pertaining to the focus of the study. Participants had the option to respond using paper mail or a digital platform (REDCap). A reminder was mailed to non-respondents after 4 and 8 weeks, respectively.

Results of a previously published control group of 171 healthy age-matched individuals were used for analysis regarding female sexual function [13]. The individuals in the control group had been randomized in a double-blinded study, received placebo oral contraceptive and were asked to answer a sexual function questionnaire. The same questionnaire, Profile of Female Sexual Function (PFSF), was employed in our study.

Patient characteristics and clinical details were recorded retrospectively from the medical records. These data included information about associated anomalies, ARM subtype according to Krickenbeck Classification [14], surgical procedures and age at the time of the study. The follow-up date was set for the 15th of June 2021.

General questions were asked about, menarche, dysmenorrhea, coital debut, pregnancies, deliveries, the impact of their ARM on their sexual function and civil status. Fertility was defined as the rate of childbirth.

Sexual function for our cohort was examined using the validated PFSF questionnaire [13, 15], where our primary outcome consisted of the average normalized score of the seven domains referred to as ‘PFSF total score’ ranging from 0 to 100. The normalized scores of individual domains were examined as secondary outcomes. The PFSF instrument contains 37 items in seven domains (sexual desire, arousal, orgasm, sexual pleasure, sexual concerns, sexual responsiveness, and sexual self-image) and a single-item measure of overall ‘sexuality satisfaction’. A score < 40 in the sexual desire domain has been previously described as “low sexual desire” [16, 17].

Bowel function was used as a composite outcome to assess sexual function using previously published data pertaining to the same individuals as the current cohort [5]. A bowel function score (BFS) of ≥ 17 of a maximum of 20 was used as an indicator of well-preserved bowel function as described previously by Kyrklund et al. [18]. Bowel function was evaluated in patients regardless of the use of laxatives, enemas, or antidiarrheal medication.

Likewise, previously published data on HRQoL pertaining to this cohort was used to assess its potential impact on sexual function[5]. The same cohort of adults (18 to 26 years old) answered a validated instrument Psychological General Well-Being Index (PGWBI) [19,20,21]. The instrument includes six dimensions comprising a total of 22 items with a maximal total score of 110, the higher the score the better HRQoL. The dimensions include Anxiety, Depressed Mood, Positive Well-being, Self-Control, General Health, and Vitality. Outcomes of the survey are interpreted as follows; 0–60 “Severe Distress”, 61–71 “Moderate Distress”, 72–92 “No Distress”, and 93–110 “Positive Well-being” [21].