Abstract

Background Information regarding menstrual difficulties for adolescents with developmental disabilities and their families is limited.

Aim To assess the impact of menstruation on adolescents with developmental disabilities and their families, and to compare this to previously reported experiences of age-matched normal girls.

Methods Families of girls aged 12–18 years with known disabilities, attending the Royal Children's Hospital, Melbourne, were recruited into a questionnaire based study evaluating issues of menstruation and associated problems, together with the consequent psychological, social and emotional impact on their families and carers. Information was sought regarding menstrual management strategies, outcome satisfaction and specific areas of family concern.

Results 103 questionnaires were completed. The average age of participating girls was 15.11 years, mean menarchal age 12.3 years. 79 girls were postmenarchal. The severity of menstrual problems was similar to a normal population. 59 (76%) were happy with the impact of menses on their social activities. More than 50% sought menstrual advice before menarche. Advice seeking strongly correlated with disability severity (p=0.01) and impact of menses on social activities (p=0.01), which in turn were highly predictive of seeking assistance (p=0.005). Carer satisfaction with current management inversely correlated with treatment seeking behaviour (p=0.034).

Conclusions Menstrual characteristics in this population are similar to those without disabilities. There is a high level of parental anxiety regarding the impact of menses, particularly when disability is severe. Medical therapies may be required but information for families is lacking. Clinicians should play a proactive and educational role with families and adolescents with disabilities.