Appropriate inclusion of adult research participants with intellectual disability: an in-depth review of guidelines and policy statements.

The history of human-subject experimentation has shown the need for safeguards to protect participants from abuse. Balancing participant protection with adequate representation of the adult intellectual disability population in research presents an important challenge. Our study aimed to analyze guidance on the appropriate inclusion of adults with intellectual disability who are or are not able to consent to biomedical research participation. Terminology, consent and type of ethically acceptable research provisions relevant to adult participants with intellectual disability were comprehensively reviewed in a selection of 17 international and national ethical research guidelines and statements. Most guidelines and statements recommend that adult participants with intellectual disability who are unable to consent be included when it is not possible to conduct the same research with adults capable of independent decision-making, or when there is therapeutic benefit and only minimal risk. Instead of naming specific requirements, the Australian statement stands out by asserting the "individual right" to participate. Assent requirements for incapacitated adults are not explicitly mentioned in most documents reviewed. There appears to be room for further description of the importance of careful capacity assessments and solid assent requirements in ethical research guidance documentation to promote meaningful participation of adults with intellectual disability.

Anorexia nervosa in adolescents: evolution of weight history and impact of excess premorbid weight.

The purpose of our study is to establish if the proportion of patients diagnosed with anorexia nervosa that have a history of excess weight has increased over a 10-year period and to study how different premorbid weight groups vary in terms of clinical characteristics. We performed a single-center, retrospective cohort study of all new patients presenting with anorexia nervosa, restrictive and binge/purge subtypes, in 2004 and 2014 at the Adolescent Medicine Clinic of Sainte-Justine University Health Centre (n = 172). The prevalence of excess premorbid weight was similar in both cohorts (32% in 2004 versus 29.5% in 2014). The historically overweight subgroup had a lower heart rate at intake (64.77 versus 69.75, p = 0.03). Patients with excess premorbid weight lost an average of 1 kg more per month than their historically thinner counterparts (2.6 kg versus 1.6 kg/month, p = 0.0011). The total decrease in BMI was much greater in patients with a history of excess weight (7 BMI points versus 3.8, p = 0.0001).Conclusion: Since overweight and obese patients present with significant weight suppression values, our study stresses the importance of screening for AN in all patients rather than in only the noticeably underweight. What is Known: • More than one third of patients presenting with AN have a history of overweight or obesity, which is comparable to the general population. • A delay between AN onset and diagnosis has been described in overweight adolescents. What is New: • Historically overweight patients presenting with AN demonstrate increased speed of weight loss, greater drop in BMI, and lower heart rate at presentation. • For patients with a history of excess weight considered as having recovered from AN, the average BMI at discharge was within normal limits.