Mortality risk among adults with cerebral palsy: alarming findings and lingering questions

Landes, Scott D.

doi:10.1111/dmcn.14221

Cited by 5 publications

(5 citation statements)

References 6 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Though not engaging the topic of Down syndrome, recently, there has been some debate regarding whether a different developmental disability, cerebral palsy, should be reported as the UCOD on death certificates (Landes 2019; Ryan et al . 2019; Ryan et al .…”

Section: Discussionmentioning

confidence: 99%

Factors associated with the reporting of Down syndrome as the underlying cause of death on US death certificates

Landes

Turk

Finan

2022

J intellect Disabil Res

Self Cite

View full text Add to dashboard Cite

Background Efforts aimed at preventing premature mortality for people with Down syndrome are hindered by the practice of reporting disability as the underlying cause of death. Prior research suggests this form of diagnostic overshadowing may be the result of increased uncertainty surrounding the death. Methods This study uses bivariable analysis and multivariable logistic regression models to investigate associations between sociodemographic characteristics, comorbidities, and death context and processing characteristics with the reporting of Down syndrome as the underlying cause of death in 2005–2017 US Multiple Cause of Death data files. Results The reporting of Down syndrome as the underlying cause of death was associated with characteristics indicative of an increased amount of uncertainty surrounding the death. Results also suggest other mechanisms may inform inaccurate reporting, such as racial bias, and the continued conflation of disability and health. Conclusions Medical personnel certifying death certificates should strive for accuracy when reporting the causes of death. To ensure this outcome, even in the midst of increased uncertainty, Down syndrome should not be reported as the underlying cause of death unless the decedent was diagnosed with Alzheimer's disease or unspecified dementia. Future research should further explore the possibility that increased death certification errors for adults with Down syndrome, or other developmental disabilities, are associated with racial bias.

show abstract

Section: Discussionmentioning

confidence: 99%

Factors associated with the reporting of Down syndrome as the underlying cause of death on US death certificates

Landes

Turk

Finan

2022

J intellect Disabil Res

Self Cite

View full text Add to dashboard Cite

show abstract

“…A related and important issue is the reporting of specific types of intellectual disabilities as an underlying cause of death. There are different perspectives on the accuracy of this practice,35 36 with unique challenges that have not been but need to be discussed in research examining death certificate data for children. We have tried to balance these challenges by reporting the underlying causes of death as well as the contributing causes of deaths.…”

Section: Discussionmentioning

confidence: 99%

Rates, causes and predictors of all-cause and avoidable mortality in 163 686 children and young people with and without intellectual disabilities: a record linkage national cohort study

et al. 2022

View full text Add to dashboard Cite

Objectives To investigate mortality rates and associated factors, and avoidable mortality in children/young people with intellectual disabilities. Design Retrospective cohort; individual record-linked data between Scotland’s 2011 Census and 9.5 years of National Records for Scotland death certification data. Setting General community. Participants Children and young people with intellectual disabilities living in Scotland aged 5–24 years, and an age-matched comparison group. Main outcome measures Deaths up to 2020: age of death, age-standardised mortality ratios (age-SMRs); causes of death including cause-specific age-SMRs/sex-SMRs; and avoidable deaths. Results Death occurred in 260/7247 (3.6%) children/young people with intellectual disabilities (crude mortality rate=388/100 000 person-years) and 528/156 439 (0.3%) children/young people without intellectual disabilities (crude mortality rate=36/100 000 person-years). SMRs for children/young people with versus those without intellectual disabilities were 10.7 for all causes (95% CI 9.47 to 12.1), 5.17 for avoidable death (95% CI 4.19 to 6.37), 2.3 for preventable death (95% CI 1.6 to 3.2) and 16.1 for treatable death (95% CI 12.5 to 20.8). SMRs were highest for children (27.4, 95% CI 20.6 to 36.3) aged 5–9 years, and lowest for young people (6.6, 95% CI 5.1 to 8.6) aged 20–24 years. SMRs were higher in more affluent neighbourhoods. Crude mortality incidences were higher for the children/young people with intellectual disabilities for most International Statistical Classification of Diseases and Related Health Problems, 10th Revision chapters. The most common underlying avoidable causes of mortality for children/young people with intellectual disabilities were epilepsy, aspiration/reflux/choking and respiratory infection, and for children/young people without intellectual disabilities were suicide, accidental drug-related deaths and car accidents. Conclusion Children with intellectual disabilities had significantly higher rates of all-cause, avoidable, treatable and preventable mortality than their peers. The largest differences were for treatable mortality, particularly at ages 5–9 years. Interventions to improve healthcare to reduce treatable mortality should be a priority for children/young people with intellectual disabilities. Examples include improved epilepsy management and risk assessments, and coordinated multidisciplinary actions to reduce aspiration/reflux/choking and respiratory infection. This is necessary across all neighbourhoods.

show abstract

“…A related and important issue is the reporting of specific types of intellectual disabilities as an underlying cause of death. There are different perspectives on the accuracy of this practice [35][36] , with unique challenges that have not been but need to be discussed in research examining death certificate data for children. We have tried to balance these challenges by reporting the underlying causes of death as well as the contributing causes of deaths.…”

Section: Strengths and Limitationsmentioning

confidence: 99%

Rates, causes and predictors of all-cause and avoidable mortality in 163,686 children and young people with and without intellectual disabilities: A record linkage national cohort study

Hughes-McCormack

Rydzewska

Cooper

et al. 2022

Preprint

View full text Add to dashboard Cite

Objectives: To investigate mortality rates and associated factors, and avoidable mortality, in children/young people with intellectual disabilities. Design: Retrospective cohort; individual record-linked data between Scotlands 2011 Census to 9.5 years of National Records for Scotland death certification data. Setting: General community. Participants: Children and young people with intellectual disabilities living in Scotland aged 5-24 years, and an age matched comparison group. Main outcome measures: Deaths up to 2020: age of death, age-standardised mortality ratios (age-SMRs); causes of death including cause-specific age-SMRs/sex-SMRs; and avoidable deaths. Results: Death occurred in 260/ 7,247 (3.6%) children/young people with intellectual disabilities (crude mortality rate=388/100,000 person years), and 528/156,439 (0.3%) children/young people without intellectual disabilities (crude mortality rate=36/100,000 person years). SMR for children/young people with, versus those without, intellectual disabilities were 10.7 for all causes (95% confidence interval (CI)=9.47-12.1), 5.17 for avoidable death (CI=4.19-6.37), 2.3 for preventable death (1.6-3.2), and 16.1 for treatable death (CI=12.5-20.8). SMRs were highest for children (27.4, CI=20.6-36.3) aged 5-9 years, and lowest for young people (6.6, CI=5.1-8.6) aged 20-24 years. SMRs were higher in more affluent neighbourhoods. Crude mortality incidences were higher for the children/young people with intellectual disabilities for most ICD-10 chapters. The most common underlying avoidable causes of mortality for children/young people with intellectual disabilities were epilepsy, aspiration/reflux/choking and respiratory infection, and for children/young people without intellectual disabilities, were suicide, accidental drug-related deaths and car accidents. Conclusion: Children with intellectual disabilities had significantly higher rates of all cause, avoidable, treatable, and preventable mortality than their peers. The largest differences were for treatable mortality, particularly at ages 5-9 years. Interventions to improve health-care to reduce treatable mortality should be a priority for children/young people with intellectual disabilities. Examples include improved epilepsy management and risk assessments, and co-ordinated multi-disciplinary actions to reduce aspiration/reflux/choking and respiratory infection. This is necessary across all neighbourhoods.

show abstract

Mortality risk among adults with cerebral palsy: alarming findings and lingering questions

Abstract: This commentary is on the original article by Ryan et al. on pages 924–928 of this issue.

Cited by 5 publications

References 6 publications

Factors associated with the reporting of Down syndrome as the underlying cause of death on US death certificates

Factors associated with the reporting of Down syndrome as the underlying cause of death on US death certificates

Rates, causes and predictors of all-cause and avoidable mortality in 163 686 children and young people with and without intellectual disabilities: a record linkage national cohort study

Rates, causes and predictors of all-cause and avoidable mortality in 163,686 children and young people with and without intellectual disabilities: A record linkage national cohort study

Contact Info

Product

Resources

About