Clinical, Epidemiologic and Ethical Aspects of Hysterectomy in Young Females With Intellectual Disability: A Multi-Centre Study of Public Hospitals in Mexico City

Abstract

Background: Non-therapeutic hysterectomy has been performed to this day in Mexican women with intellectual disabilities (IDs), but the rationale for performing the procedure has been rarely submitted to clinical ethics committees. The objectives of the present research were to determine the frequency of hysterectomy and the clinical and epidemiologic characteristics that associated to the indication of hysterectomy in girls and young females with IDs and to analyse the emerging ethical issues related to the procedure.Materials and Methods: A medical chart review was conducted to identify female patients aged ≤ 25 years who had IDs based on anatomical pathologies and hospital records and underwent hysterectomy between January 2014 and December 2019 in nine high-concentration hospitals in Mexico City. Data were collected using a questionnaire developed ex professo and validated through a pilot study and analysed using the Statistical Package for the Social Sciences (SPSS) 21.0 software.Results: Information of 234 female patients with or without ID who were ≤ 25 years of age was reported by the departments of anatomical pathology and paediatrics. Of the patients, 184 (79%) were excluded because the information reported was found to be erroneous or incomplete during the medical records review. Most of the 50 emales included in the study had moderate ID (n = 23, 46%) followed by those with severe ID (n = 17, 34%). The mean age at hysterectomy was 15 ± 2.9 years. Prophylactic-total abdominal hysterectomy was the most frequently performed (n = 42, 84%). A concurrence was observed between the parental and medical reasons justifying hysterectomy. The most frequent reasons were fertility control (parents vs. physicians: 46 vs. 42%), management of menstrual hygiene (28 vs. 30%) and risk of sexual abuse (6 vs. 6%).Conclusion: This study showed that performing non-therapeutic hysterectomy is subject to the clinical judgement of physicians according to their perception of the patient's quality of life. Therefore, the ethical quality of the decision to perform the procedure in girls and young females resides in the ethical value of its consequences.

Qualitative Focus Groups with Professionals of Special Education and Parents of Young Females with Intellectual Disability Exploring Experiences with Menstrual Hygiene Management and the Trigger for the Non-Therapeutic Hysterectomy in Mexico

“…The “Rejection” of the sanitary pad [ 6 , 10 ] and/or the “Difficulty” to negotiate their use [ 11 ] were associated with the absence of pre-menarche education on the subject of menstruation, in adolescents with mild and moderate ID. For instance:…”

“…Many parents of adolescent girls who attended public schools said they preferred not to take them to school during the period of menstrual bleeding [ 2 , 6 , 8 , 11 , 12 , 14 ]. One reason cited by some of them was the “Pain” [ 6 , 12 , 14 ]; however, the majority agreed that it is “Very complicated” having to go to school to perform menstrual hygiene management for their daughters [ 2 , 8 , 12 ]. The parents who agreed to take their daughters daily to school were those whose daughters are partially or totally independent in menstrual hygiene management [ 10 , 12 ].…”

“…In all groups, menstrual bleeding was perceived positively. This was defined as: “A natural process” [ 4 , 6 , 8 , 9 , 10 , 11 , 13 , 15 ], “Something normal” [ 2 , 4 , 5 , 7 , 10 , 11 , 14 ], “Something biological” [ 6 ], “A sign that the body is working well” [ 6 ]. There were mothers of adolescents with severe ID and dependent on menstrual hygiene management who stated:…”

“…Regarding menarche, in ten focus groups [ 2 , 4 , 6 , 8 , 9 , 10 , 11 , 13 , 14 , 15 ] the parents of adolescents who were already menstruating (regardless of the degree of ID) agreed on their description of the experience during the first episode of menstrual bleeding. This generated a series of emotions in them, which they themselves labelled as feelings of: “Fear” , “Concern” , “Terror” , “Stress” , “Physical shock” , “Nostalgia” .…”

“…The most frequent medical reasons to indicate hysterectomy are fertility control, management of menstrual hygiene, and risk of sexual abuse [ 6 ]. There are no studies that report lay perception regarding menstrual hygiene management in females with ID, neither at the ‘individual level’ (e.g., perceptions of menstrual hygiene) nor at the ‘social level’ (e.g., social creations of menstrual hygiene management).…”