There are major challenges for those with Intellectual disabilities, which was discussed at the Irish Osteoporosis Society Annual Medical Conference on the 19th October 2024, as those with Intellectual disabilities are more likely to develop bone loss, which results in an increased risk of low trauma osteoporotic fractures.
Ms Anne Power, Advanced Nurse Practitioner in Chronic Disease Management at Wexford Residential Intellectual Disability Service, discussed alternative bone health screening for people with an intellectual disability. She noted that while DXA scans remain the gold standard, it can be extremely difficult and, in many cases, impossible for those with intellectual disabilities, to have a DXA scan completed.
Risk factors additional to those without ID also apply, but those which are pertinent to Intellectual disabilities include sedentary lifestyle, medications such as anticonvulsants, antipsychotics, PPI’s, specific syndromes, the severity of the Intellectual disability and physically if they are wheelchair, bed bound or limited in mobility. Physical abnormalities, behavioural and communication difficulties, as well as anxiety also increase the difficulties with DXA scanning.
Available risk factor identification tools such as the “Fracture Risk Assessment Tool (FRAX)” and “Q Fracture” were devised based on risk factors applicable to the general population. Unfortunately, they do not incorporate the unique risks associated with the intellectual disability population, and those at risk of osteoporosis may not be identified and influenced to access bone health screening and receive required interventions.
Although, the 2007” Strategy to Prevent Falls and Fractures in Ireland” has a subsection on osteoporosis prevention and management, it does not include or provide education for people with intellectual disabilities.
Note: There are limited DXA sites that have hoist facilities, which are required for those who are wheelchair dependant or non-ambulatory.
People with intellectual disabilities may have physical abnormalities and therefore anatomically, it is not possible for them to lie in the correct positioning for a DXA scan. Anxiety in unfamiliar environments also inhibits their compliance with engaging in DXA scanning, and lying in the correct position for the required amount of time in the majority of cases is not feasible.
Behavioural and communication difficulties also impact the accessibility of DXA for many individuals with intellectual disabilities, and it is often not achievable despite the application of reasonable adjustments.
This lack of diagnostics also has implications on the initiation of treatment, and many are advancing through the disease, without Osteoporosis medications.
Even if health professionals are proactive and prescribe Osteoporosis medications based on risk factors or fragility fractures, there is no method of monitoring the effects of the prescribed treatments, which is crucial as it is a silent disease with no signs or symptoms. These challenges highlight why alternative screening devices are essential for those who cannot access DXA scanning.
Ms Power initiated a pilot study using Echolight, which is a non-invasive portable diagnostic and monitoring device.
Echolight is a innovative technology which is based on REMS technology. It is a small ultrasound device, equipped with a convex probe and evaluation of Bone Mineral Density (BMD) is performed at the femoral hip and lumbar spine (L1–L4)
Echolight appears to be the answer for those with Intellectual disabilities for the following reasons.
Ms Power has completed 65 Echolight scans and approx. 80% of these individuals had a severe/profound level of ID.
It was established that 92% of people (60 out of 65) were able to undergo assessment in both sites, the femur and lumbar vertebrae.
97% of the individuals were able to undergo assessment in one site, either the femur or lumbar vertebrae
NOTE: 80% of these individuals had previously never had their bone health assessed, as they were unsuitable to have a regular DXA scan.
Of the 65 individuals who were screened via Echolight 39% had osteoporosis, 32% osteopenia and 29% were negative.
Of the 25 individuals who were identified to be within the osteoporotic range, only 7 of these individuals had a previous diagnosis and had been prescribed Osteoporosis medications.
Earlier this year Ms Power presented a poster at the NMPDU Southeast /SETU Research Conference, providing research on Echolight as an alternative device to DXA. The poster won first prize and there was huge interest in this alternative accessible bone screening device from intellectual disabilities services nationwide, as they are all facing the same challenges in relation to the accessibility of DXA.
Ms Power is now in collaboration with the Trinity Centre for Ageing and Intellectual Disability, and she is in the process of a research project titled “A Feasibility Assessment of the Echolight Bone Screening Device for Individuals with Intellectual Disabilities”, this research study is being funded by the NMPDU. The study includes people with mild, moderate, severe and profound intellectual disability from 4 service providers in Ireland.
If an alternative screening device method is not available for these individuals, it will mean that most will end up having fractures that could have been prevented, along with loss of independence, and additional resources needed to care for them.
Ms Power stated that “In a time where we are striving for inclusive healthcare and promoting equality and equity, we need to be realistic and proactive and stop expecting generalist approaches to be feasible for this unique cohort of people. People with intellectual disabilities who cannot access DXA due to the issues previously mentioned, need to be offered alternative screening options to measure and monitor their bone mineral density”.
Ms Power emphasized that she absolutely understood and agreed that DXA is the gold standard diagnostic device for screening, diagnosing and monitoring bone loss, for those who can access a DXA machine.
Ms Power then asked the Irish Osteoporosis Society to endorse the use of Echolight for those with intellectual disabilities. A discussion on the topic followed, which included Osteoporosis experts on the panel. It was clarified by Professor Moira O’Brien, the President of the Irish Osteoporosis Society and by Michele O’Brien, the CEO of the Irish Osteoporosis Society that the endorsement would only be for those with Intellectual disabilities. There were no objections from anyone attending the meeting.
