Poorer bone health screening in intellectually disabled

There is no dedicated bone health screening service for people with intellectual disabilities in Ireland, thus these patients are at increased risk of late diagnosis of osteoporosis, preventable fractures, and poorer outcomes, the Irish Osteoporosis Society 2023 Annual Medical Conference heard.

Ms Anne Power is an Advanced Nurse Practitioner in chronic health conditions for adults with an intellectual disability, who works with the Wexford Residential Intellectual Disability Service. Ms Power presented to the conference on behalf of people with intellectual disabilities, their families, carers and service providers nationwide to highlight the ongoing challenges they are faced with in relation to bone health diagnostics for people with intellectual disabilities.

“In a time where we are striving for inclusive healthcare, a very high percentage of people with intellectual disabilities have undiagnosed bone loss. There are approximately 74,000 people with intellectual disabilities in Ireland and currently there is no appropriate screening device for these individuals as many cannot access regular DXA due to feasibility issues.

“Research shows that most fractures can be prevented and most people with intellectual disabilities would be high risk for bone loss. For those with intellectual disabilities who are already contending with multiple medical issues, now is the time that some form of accessible screening and diagnostic tool be prioritised and made available for them.”

Ms Power explained how she was presenting to advocate for the recognition of an alternative screening device for those with intellectual disabilities. Echolight is a new innovative non-invasive bone densitometry screening device which is based on radiofrequency echographic multi-spectrometry technology. It is a diagnostic and monitoring device, which does not produce ionising radiation. It is portable which would allow for it to be used for screening in alternative environments within community settings and reasonable adjustments could be provided, which is a lawful requirement here in Ireland, Ms Power told the meeting. The Echolight scan takes approximately two minutes and it does not require the patient to lie still in an exact position, which a regular DXA scan does require. The Echolight appears to be very promising for those with an intellectual disability who cannot access a regular DXA scan and it appears to have the potential to alleviate the challenges those working in the intellectual disability area are encountering on a daily basis with their clients, she said.

The audience were asked to support and help with getting access to bone health screening services for individuals with intellectual disabilities who cannot access DXA, so treatment plans can be initiated. “It is so important that fractures are prevented in those in our society who are so vulnerable and who depend on us. The consequences of fractures in these individuals can be particularly severe due to pre-existing physical disabilities and limited compliance with rehabilitation,” Ms Power said.

DXA remains the ‘gold standard’ device for diagnosing osteoporosis and it will remain the first diagnostic pathway for people with intellectual disabilities. However, for those whom DXA is simply not feasible, a pathway must be initiated as many people with intellectual disabilities do not come up at risk of fractures on FRAX due to their age, and certain risk factors pertinent to people with intellectual disabilities are not included on FRAX, she concluded.