Osteoporosis in Adult Patients with Intellectual and Developmental Disabilities: Special Considerations for Diagnosis, Prevention, and Management

Abstract

As medical care progresses, patients with intellectual and developmental disabilities are living longer and beginning to experience diseases that commonly afflict the aging population, such as osteoporosis. Osteoporosis and resultant fractures increase disability and threaten the independence of this vulnerable population. In addition, the diagnosis, prevention, and management of osteoporosis present unique challenges in these patients. Critical preventive targets include exercise modification, fall prevention, and monitoring for nutrient deficiencies. Commonly used in diagnosis and treatment monitoring, dual-energy x-ray absorptiometry (DXA) scan of the hip and spine may not be feasible, whereas peripheral DXA or computed tomography may be more accessible for patients with physical disabilities. Pharmacological treatment should be tailored to the individual patient, considering factors such as adherence and comorbidities. Finally, bone turnover markers are a noninvasive, cost-effective option for monitoring treatment response in patients who cannot undergo DXA.

Ageing, osteoporosis and intellectual disability; risks differ, and diagnosis can be missed

“…The road to equitable healthcare is riddled with challenges, particularly when it comes to assessing the bone health of individuals with intellectual disabilities. Bone health, including for the general population, is often relegated to the periphery of annual health checks, exacerbating the potential for undiagnosed cases of osteoporosis/osteopenia (Fritz et al, 2021; Jasien et al, 2012; Martin et al, 2001). The advancing age of this population emphasises a pressing reality that bone health assessment, including annual height to monitor change, assessment of risk factors such as walking difficulty, presence of AEDs and PPIs and establishing vitamin D and calcium profile, is even more pivotal.…”

“…It is increasingly recognised and of urgent concern that osteoporosis/osteopenia (poor bone health) is underdiagnosed and undertreated in the older population of people with intellectual disability (Burke et al, 2019(Burke et al, , 2021Fritz et al, 2021;Jasien et al, 2012;Nguyen et al, 2004;Winterhalder et al, 2022). In fact, Nguyen et al (2004) report up to 75% of women and 90% of men with increased risk of poor bone health are not investigated, and they go on to report that more than 75% who are diagnosed are not treated.…”

“…International studies suggest that people with intellectual disability have an increased loading of risks for poor bone health (Fritz et al, 2021; Lin et al, 2015; Srikanth et al, 2011). Indeed the prominent risks may differ and may not be factors that are commonly recognised or considered during the assessment of people with intellectual disability (Burke et al, 2021; Winterhalder et al, 2022).…”

“…All too often, diagnosis of poor bone health is dependent on dual‐energy X‐ray absorptiometry (DXA) scanning, an assessment that may prove too difficult for people with intellectual disability or indeed may not be offered (Frighi et al, 2019; Fritz et al, 2021; Walsh et al, 2022). There is often a lack of access to this type of assessment for individuals with intellectual disability, particularly with mobility difficulties as well as difficulty in complying with instruction; they may experience fear, present with behaviours that challenge or may simply be too scared with an unfamiliar environment (Brodtkorb et al, 2016; Gillis et al, 2009; Iacono et al, 2014), factors that pose challenges for diagnosis.…”