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• People with intellectual disabilities and Patient decision aids
  Bernadette Flood
  Published on: 15 May 2018

• Published on: 15 May 2018

  People with intellectual disabilities and Patient decision aids

  • Bernadette Flood, Pharmacist Daughters of Charity Disability Support Services Dublin

  The population with intellectual disabilities have multiple morbidities and greater health needs compared with the general population. This population experiences health and healthcare inequities and inequalities. To reduce the health inequality gap people with intellectual disabilities should be involved as partners in their healthcare. This will require access to relevant information and the development of tools that support collaboration, such as tailored patient decision aids (PDA) (1).
  The population with intellectual disabilities is rarely considered or involved (2)at the guideline development stage. The consequent failure of clinical guidelines to adequately address the health needs of people with intellectual disabilities exacerbates already poor access to health and healthcare. An examination of clinical guidelines from seven countries(3) found that most clinical guidelines failed to address people with intellectual disabilities as being at high risk for particular conditions when appropriate.
  Guidelines and PDAs developed with the general population in mind may not reflect the complexity and multi-morbidity of individual patients with intellectual disabilities and their ‘real world’ lives. Many people with intellectual disabilities have visual, hearing, mobility, memory and dexterity difficulties. Clinicians and guidelines developers may not be aware of the complexity of the task their ask their patients with intellectual disabilities and their...

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  The population with intellectual disabilities have multiple morbidities and greater health needs compared with the general population. This population experiences health and healthcare inequities and inequalities. To reduce the health inequality gap people with intellectual disabilities should be involved as partners in their healthcare. This will require access to relevant information and the development of tools that support collaboration, such as tailored patient decision aids (PDA) (1).
  The population with intellectual disabilities is rarely considered or involved (2)at the guideline development stage. The consequent failure of clinical guidelines to adequately address the health needs of people with intellectual disabilities exacerbates already poor access to health and healthcare. An examination of clinical guidelines from seven countries(3) found that most clinical guidelines failed to address people with intellectual disabilities as being at high risk for particular conditions when appropriate.
  Guidelines and PDAs developed with the general population in mind may not reflect the complexity and multi-morbidity of individual patients with intellectual disabilities and their ‘real world’ lives. Many people with intellectual disabilities have visual, hearing, mobility, memory and dexterity difficulties. Clinicians and guidelines developers may not be aware of the complexity of the task their ask their patients with intellectual disabilities and their carers to undertake e.g. blood glucose monitoring, sliding scale insulin administration, inhaler use, administration of epilepsy rescue medication etc..
  Significant gaps in the reporting of evaluations of PDAs have been identified (4). The SUNDAE Checklist (Standards for UNiversal reporting of patient Decision Aid Evaluations) should facilitate evaluation of any PDA, in ‘hard to reach’ population groups, such as the population with intellectual disabilities.
  Before applying a guideline or using PDAs with a person with an intellectual disability the following questions could be asked
  • Does this person with an intellectual disability understand the connection between the illness and some consequent intervention e.g. diet/exercise, prescribed medication, blood testing?
  • What level of health literacy has the person with intellectual disability and/or their carer?
  • Do the outcomes measured matter to this person with intellectual disability?
  • Is this person with intellectual disability very different from the people studied?
  • Are the treatments practical in the ‘real world’ living environment of this person with intellectual disability?
  • Do treatment comparisons reflect the circumstances of the person with intellectual disability?
  • How certain can the evidence be applied to a person with intellectual disability?
  • Do the advantages outweigh the disadvantages for this person with intellectual disability?

  1. BMJ 2017; editorial Shehan, Strydom, Hassiotis 358 doi: https://doi.org/10.1136/bmj.j3896
  2. Mizen LAM, Maclie ML, Cooper S-A, Melville CA. Clinical guidelines contribute to the health inequities experienced by individuals with intellectual disabilities. Implementation Science. 2012;7(42):1–9.
  3. Mizen LAM, Maclie ML, Cooper S-A, Melville CA. Clinical guidelines contribute to the health inequities experienced by individuals with intellectual disabilities. Implementation Science. 2012;7(42):1–9
  4. Sepucha KR, Abhyankar P, Hoffman AS, et al. Standards for UNiversal reporting of patient Decision Aid Evaluation studies: the development of SUNDAE Checklist. BMJ Qual Saf Published Online First: 21 December 2017. doi: 10.1136/bmjqs-2017-006986

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  Conflict of Interest:
  None declared.

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