Caregiver goals and satisfaction for menstrual suppression in adolescent females with developmental disabilities: A prospective cohort study

Elsevier

Available online 1 June 2023, 101484

Disability and Health JournalAuthor links open overlay panel, , , , , , AbstractBackground

Adolescents with developmental disabilities and their caregivers often seek menstrual management. Caregivers frequently serve as medical decision-makers and little is known about caregiver goals for menstrual management and satisfaction over time.

Objective

Assess caregiver reasons for initiating menstrual management in adolescents with disabilities and satisfaction over 12 months.

Methods

Prospective cohort study of caregivers of adolescents with developmental disabilities seeking menstrual management at a pediatric and adolescent gynecology clinic. Data derive from caregiver surveys and adolescents’ electronic medical records.

Results

Ninety-two caregiver-adolescent pairs enrolled. The mean age of adolescents was 14.4 (+ 2.6). The most common method started was levonorgestrel intrauterine device (LNG-IUD; 52, 56.5%), followed by oral norethindrone acetate (21, 22.8%). Caregivers cited hygiene concerns (84.8%), behavioral problems (52.2%), and heavy/excessive bleeding (48.9%) as reasons for initiating menstrual suppression. Caregivers who identified hygiene or heavy/excessive bleeding as the most important reason for management were more likely to select LNG-IUD (p=0.009). Caregivers who cited behavioral/mood or seizure concerns as the most important reason were more likely to choose other methods (p<0.05). At 12 months, caregiver satisfaction with all methods was high (66.2-86.9 on a 100-point scale). For every additional day of bleeding satisfaction decreased by 3.7 points (95% CI: 2.3-5.0).

Conclusions

Caregiver satisfaction with all methods is high, but negatively correlates with days of bleeding. Caregiver reasons for menstrual suppression influences method chosen. Management may reflect both patient and caregiver priorities; research is needed to better understand shared decision-making models that promote reproductive autonomy in adolescents with developmental disability.

Section snippetsCity and State of Study

Aurora, Colorado

Disclosures

No conflicts of interest to disclose

Meeting Presentation

North American Society for Pediatric and Adolescent Gynecology Annual Clinical and Research Meeting; Chicago, IL; April 7-9, 2022.

Methods

This IRB-approved (#REDACTED) prospective cohort study was conducted from May 2019 to February 2021 at [REDACTED]. Study personnel recruited caregivers of post-menarchal adolescents or young adults with developmental disabilities (up to age 21) presenting to a Pediatric and Adolescent Gynecology (PAG) clinic to initiate or change a method of menstrual suppression. The clinic, located at tertiary children’s hospital, is a highly specialized practice for infants, children, adolescents, and young

Results

A total of 92 caregivers participated in the study. Adolescent patients’ mean age was 14.4 (+ 2.6) with a body mass index (BMI) of 21.4 (+ 5.6). Caregivers reported that over half (53, 57.6%) of adolescents needed assistance with toileting (Table 1). Thirty-eight percent of adolescents could not ambulate without assistance and 26.1% had a gastrostomy tube in place. Adolescents’ diagnoses included seizure disorder; autism; cerebral palsy; Down, Rett, Dravet, Noonan, and DiGeorge syndromes;

Discussion

This study prospectively follows the caregivers of a cohort of adolescents with developmental disabilities initiating menstrual management. We describe the clinical characteristics of the adolescent cohort, indications for menstrual management, and caregiver reported outcomes of menstrual management over the course of 12 months. Adolescents had a variety of developmental disability diagnoses, many with other significant medical diagnoses including rare and complicated genetic diagnoses that led

Conclusion

The primary contribution of this study is to add evidence of caregiver motivation and satisfaction over time to the literature on menstrual management adolescents with complex medical issues and developmental disabilities. We evaluated factors that may influence caregiver motivation for and satisfaction with a particular method, rather than assuming continuation indicated satisfaction. The prospective design of this study enabled an assessment of caregivers at baseline and over a one-year

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