Ask about menstrual symptoms
Ask about menstrual-related symptoms and concerns regularly. Provide education regarding symptom management and options, including the use of nonhormonal interventions (eg, NSAIDs).185
Recommended
Empirical Expert
Menstrual disorders adversely affect the health and well-being of some women with IDD. Issues include menstrual-related pain, excessive bleeding and anemia, reduced seizure control, negative effects on hygiene, functioning, and behaviour, social isolation, and increased caregiver burden.183, 184
Discuss menstrual regulation
Discuss methods of menstrual regulation with women with IDD and their caregivers. In deciding together on a method, consider safety and effectiveness, the patient’s health circumstances, and the patient’s and caregiver’s views on the benefits and burdens to the patient.184, 187
Recommended
Expert
There is insufficient evidence currently to recommend one method of menstrual regulation or suppression over others for women with IDD.186, 187
Screen for exploitation
Screen for sexual exploitation and unintentional risky or harmful sexual practices. When these are present, facilitate deliberation with the patient and her caregiver of a range of methods to reduce risks of infections and to regulate fertility.
Recommended
Expert
Medical considerations regarding fertility regulation for women with IDD are similar to those for other women. In Canada, the law prohibits parents or other substitute decision makers from consenting on behalf of persons with IDD who are incapable of giving consent to surgical sterilization for contraceptive purposes.188
Provide women with IDD with increased monitoring during pregnancy (e.g., longer and more frequent appointments).191
Recommended
Ecosystem
Pregnancy poses increased risks of adverse health outcomes for women with IDD. They have higher rates of obesity, epilepsy, polypharmacy, mental health issues, and poverty than similar-aged women in the general population. They are also more likely to have complications of pregnancy, such as venous thromboembolism and preeclampsia, and to undergo labour induction and caesarean sections than pregnant women without IDD.189,190
Address modifiable risk factors (eg, smoking cessation) prior to or as soon as possible during pregnancy. 189
Recommended
Ecosystem
Pregnancy poses increased risks of adverse health outcomes for women with IDD. They have higher rates of obesity, epilepsy, polypharmacy, mental health issues, and poverty than similar-aged women in the general population. They are also more likely to have complications of pregnancy, such as venous thromboembolism and preeclampsia, and to undergo labour induction and caesarean sections than pregnant women without IDD.189,190
Engage local resources that can support and educate mothers with IDD and their partners as soon as possible during pregnancy and after childbirth.189
Recommended
Ecosystem
Pregnancy poses increased risks of adverse health outcomes for women with IDD. They have higher rates of obesity, epilepsy, polypharmacy, mental health issues, and poverty than similar-aged women in the general population. They are also more likely to have complications of pregnancy, such as venous thromboembolism and preeclampsia, and to undergo labour induction and caesarean sections than pregnant women without IDD.189,190
Ask about menopausal symptoms early
Ask perimenopausal women with IDD about menopausal symptoms at an earlier age than women without IDD.192
Recommended
Experiential
Menopause occurs earlier among women with IDD, especially those with certain genetic disorders such as Down syndrome, than among women in the general population. Women with IDD are often unaware of symptoms associated with menopause (eg, disturbed sleep).192
Ask about relationships
Ask male and female patients, their family, or other caregivers about the patient’s relationships, intimacy and sexuality(eg, sexual behaviour, gender identity, sexual orientation, genetic risks).194 Provide or refer for education and counselling services that are adapted to the needs of people with IDD.193
Recommended
Expert
Relationships, intimacy, and sexuality are important issues that are often not considered or addressed in the primary care of adolescents and adults with IDD.193
Learn how to implement these guideline recommendations into your practice from selected articles in the special issue on primary care of adults with intellectual and developmental disabilities in Canadian Family Physician, Vol 64 (suppl 2): S1-78, April 2018:
Exploring the prenatal experience of women with intellectual and developmental disabilies
183. Grover SR. Gynaecological issues in adolescents with disability. J Paediatr Child Health. 2011;47(9):610-3.
184. Savasi I, Spitzer RF, Allen LM, Ornstein MP. Menstrual suppression for adolescents with developmental disabilities. J Pediatr Adolesc Gynecol. 2009;22(3):143-9.
185. van Schrojenstein Lantman-de Valk HMJ, Rook F, Maaskant MA. The use of contraception by women with intellectual disabilities. Journal of Intellectual Disability Research. 2011;55(4):434-40.
186. Atkinson E, Bennett MJ, Dudley J, Grover S, Matthews K, Moore P, et al. Consensus statement: Menstrual and contraceptive management in women with an intellectual disability. Aust N Z J Obstet Gynaecol. 2003;43(2):109-10.
187. McCarthy M. Prescribing contraception to women with intellectual disabilities: General practitioners’ attitudes and practices. Sex Disab. 2011;29(4):339-49.
188. Kluge EH. After “Eve”: Whither proxy decision-making? CMAJ. 1987;137(8):715-20.
189. Brown H, Cobigo V, Lunsky Y, Vigod S. Maternal and offspring outcomes in women with intellectual and developmental disabilities: A population-based cohort study. BJOG: An International Journal of Obstetrics & Gynaecology. 2017;124(5):757-65.
190. Brown HK, Kirkham YA, Cobigo V, Lunsky Y, Vigod SN. Labour and delivery interventions in women with intellectual and developmental disabilities: A population-based cohort study. J Epidemiol Community Health. 2016;70(3):238-44.
191. Brown HK, Lunsky Y, Wilton AS, Cobigo V, Vigod SN. Pregnancy in women with intellectual and developmental disabilities. J Obstet Gynaecol Can. 2016;38(1):9-16.
192. Willis DS, Wishart JG, Muir WJ. Menopausal experiences of women with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities. 2011;24(1):74-85.
193. Stein S, Tepper M. Chapter 110: Sexuality. In: Rubin IL, Merrick J, Greydanus DE, Patel DR, editors. Health Care for People with Intellectual and Developmental Disabilities Across the Lifespan. Rubin and Crocker 3rd ed. Springer; 2016. p. 1365-81.
194. Abells D, Kirkham YA, Ornstein MP. Review of gynecologic and reproductive care for women with developmental disabilities. Curr Opin Obstet Gynecol. 2016;28(5):350-8.
