Electronic Health Record Analysis of the Primary Care of Adults with Intellectual and Other Developmental Disabilities.

BACKGROUND AND AIMS Adults with intellectual and other developmental disabilities (IDD) are at risk for sub-optimal primary health care. Electronic Health Record (EHR) analyses are an under-utilized resource for studying the health and primary care of this population. METHODS This was a case-control EHR analysis of adults with IDD provided primary care through the Cleveland Clinic between 2005 and 2008. The IDD cohort was identified by relevant ICD-9 codes in problem list and encounter diagnoses. A comparison cohort matched by age, sex, race, and insurance was also specified. Demographic, health and health service characteristics of the two cohorts were compared. FINDINGS The IDD cohort consisted of 1267 individuals, mean age 39 years, 54% male, 78% Caucasian. Age, sex, racial, and health insurance characteristics were similar in the 2534 individuals in the comparison cohort. Individuals with IDD were significantly more likely to carry diagnoses of epilepsy, constipation, osteoporosis, obesity, and hyperlipidemia; but were significantly less likely to bear diagnoses of hypertension, diabetes, osteoarthritis, heart failure, coronary heart disease, and COPD. Despite a lower mean BMI, individuals with IDD were more likely to be labeled obese. Only genetic consultation rates were higher in the IDD cohort. DISCUSSION Health services research related to persons with IDD is becoming more feasible as large health systems adopt EHRs. Further analyses from this dataset will investigate whether variations in disease rates in adults with IDD represent true differences in disease prevalence versus disparities in health care.

[1]  Patricia Noonan Walsh,et al.  Managing health problems in people with intellectual disabilities , 2008, BMJ : British Medical Journal.

[2]  Paris A. DePaepe,et al.  Health status, utilization patterns, and outcomes of persons with intellectual disabilities: review of the literature. , 2005, Mental retardation.

[3]  B. Dean,et al.  Review: Use of Electronic Medical Records for Health Outcomes Research , 2009, Medical care research and review : MCRR.

[4]  D. Terris,et al.  Health state information derived from secondary databases is affected by multiple sources of bias. , 2007, Journal of clinical epidemiology.

[5]  Amy N. Cohen,et al.  Review paper: Informatics Systems to Promote Improved Care for Chronic Illness: A Literature Review , 2007, J. Am. Medical Informatics Assoc..

[6]  S. Havercamp,et al.  Health Disparities among Adults with Developmental Disabilities, Adults with other Disabilities, and Adults Not Reporting Disability in North Carolina , 2004, Public health reports.

[7]  The Quality of Health Care for Adults with Developmental Disabilities , 2002 .

[8]  K. Thiru,et al.  Systematic review of scope and quality of electronic patient record data in primary care , 2003, BMJ : British Medical Journal.

[9]  M. Haveman,et al.  People with intellectual disability in general practice: case definition and case finding. , 1997, Journal of intellectual disability research : JIDR.

[10]  Alison W Saville,et al.  Women with cognitive limitations living in the community: evidence of disability-based disparities in health care. , 2006, Mental retardation.

[11]  D. McCulloch,et al.  Medical needs of people with intellectual disability require regular reassessment, and the provision of client- and carer-held reports. , 2003, Journal of intellectual disability research : JIDR.

[12]  J. Bodfish,et al.  Evidence of altered epidermal nerve fiber morphology in adults with self-injurious behavior and neurodevelopmental disorders , 2008, Pain.

[13]  M. Warburg.  Visual impairment in adult people with intellectual disability: literature review. , 2001, Journal of intellectual disability research : JIDR.

[14]  J. Avorn,et al.  A review of uses of health care utilization databases for epidemiologic research on therapeutics. , 2005, Journal of clinical epidemiology.

[15]  R. Andersen.  Revisiting the behavioral model and access to medical care: does it matter? , 1995, Journal of health and social behavior.

[16]  S. Krishnaswami,et al.  Are individuals with mental retardation at high risk for chronic disease? , 1997, Family medicine.

[17]  C. F. de Winter,et al.  Prevalence of cardiovascular risk factors in older people with intellectual disability. , 2009, American journal on intellectual and developmental disabilities.

[18]  J. Groothoff,et al.  People with an intellectual disability and their health problems: a review of comparative studies , 2018 .

[19]  A. Rimmerman,et al.  Examining Outpatient Health Care Utilization Among Adults with Severe or Profound Intellectual Disabilities Living in an Urban Setting , 2007, Journal of social work in disability & rehabilitation.

[20]  G. Dinant,et al.  Health problems of people with intellectual disabilities: the impact for general practice. , 2007, The British journal of general practice : the journal of the Royal College of General Practitioners.

[21]  C. Draheim.  Cardiovascular disease prevalence and risk factors of persons with mental retardation. , 2006, Mental retardation and developmental disabilities research reviews.

[22]  A. Hall,et al.  Patterns in primary health care utilization among individuals with intellectual and developmental disabilities in Florida. , 2007, Intellectual and developmental disabilities.

[23]  D. Felce,et al.  Previously unidentified morbidity in patients with intellectual disability. , 2006, The British journal of general practice : the journal of the Royal College of General Practitioners.

[24]  H. Evenhuis,et al.  Prevalence of visual impairment in adults with intellectual disabilities in the Netherlands: cross-sectional study , 2006, Eye.

[25]  Kaija Saranto,et al.  Definition, structure, content, use and impacts of electronic health records: A review of the research literature , 2008, Int. J. Medical Informatics.

[26]  Hans Verschuure,et al.  Prevalence of hearing loss in 1598 adults with an intellectual disability: Cross-sectional population based study , 2006, International journal of audiology.

[27]  G. Krahn,et al.  A cascade of disparities: health and health care access for people with intellectual disabilities. , 2006, Mental retardation and developmental disabilities research reviews.

[28]  H. Evenhuis,et al.  Diagnosis of sensory impairment in people with intellectual disability in general practice. , 1997, Journal of intellectual disability research : JIDR.

[29]  M. Kerr,et al.  A randomized control trial of an opportunistic health screening tool in primary care for people with intellectual disability. , 1997, Journal of intellectual disability research : JIDR.