INTELLECTUAL AND DEVELOPMENTAL DISABILITIES 2014, Vol. 52, No. 3, 187-192

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Hospitalizations of Adults With Intellectual Disability in Academic Medical Centers Sarah H. Ailey, Tricia Johnson, Louis Fogg, and Tanya R. Friese Abstract Individuals with intellectual disability (ID) represent a small but important group of hospitalized patients who often have complex health care needs. Individuals with ID experience high rates of hospitalization for ambulatory-sensitive conditions and high rates of hospitalizations in general, even when in formal community care systems; however, no research was found on the common reasons for which this population is hospitalized. Academic medical centers often treat the most complex patients, and data from these centers can provide insight into the needs of patient populations with complex needs. The purpose of this study was to analyze descriptive data from the UHC (formerly known as the University Healthsystem Consortium; an alliance of 115 U.S. academic medical centers and 300 of their affiliated hospitals) regarding common reasons for hospitalization, need for intensive care, and common hospitalization outcome measures of length of stay and complications for adult (age > 18) patients with ID. Findings indicate the need for specific attention to the needs of hospitalized patients with ID. Key Words:

hospitalization; adults; intellectual disability; academic medical center

In 2001, the surgeon general issued Closing the Gap: A National Blueprint to Improve the Health of Persons With

Mental Retardation (now called intellectual disahility [ID]; U.S. Puhlic Health Service, 2001), which set a goal of improving the quality of health care for this population. One issue in improving health care is to address the needs of hospitalized patients with ID. A study conducted in Manitoha, Canada found that individuals with ID are more likely than the general population to he hospitalized for ambulatory-sensitive conditions specifically related to their histories, with an overall adjusted rate ratio of 6.1; for seizure disorders the adjusted rate ratio was 54 and for schizophrenic disorders 15 (Balogh, Brownell, OuUette-Kuntz, & Colantonio, 2010). Even when in formalized community care systems, individuals with ID experience high rates of hospitalization. A study done in two regions of New York state among adults with ID ages 40-79 living in community residential facilities of 4-15 people indicated that, in 1 year, 16% were hospitalized (Janicki et al, 2002). Despite high rates of hospitalization, various studies have indicated that individuals with ID and their caretakers perceive hospital staff to often he uncomfortable with and indifferent to the needs of

S. H, Ailey et al.

people with ID (Cumella & Martin, 2004; Webber, Bowers, & Bigby, 2010). Studies have indicated that nurses and therapists think they lack the knowledge to adequately care for individuals with ID and have worries that, despite hest intentions, they may not he providing optimal care (McConkey & Truesdale, 2000; Sowney & Barr, 2006). A majority of deans of medical and dental schools indicated that graduates are not prepared to he competent in the care of individuals with ID (Holder, Hood, &. Corhin, 2006). Hospital staff are further hampered as typical information gathered about individuals with ID during hospitalization is not sufficient for developing comprehensive plans for their care (BoUands & Jones, 2002). Using MFDLINE, CINAHL, and PsychlNFO datahases, no research in the last 10 years was found on common reasons for which individuals with ID are hospitalized and, with the exception of a study on postoperative complications (Lin, Liao, Chang, Chang, & Chen, 2011), none on outcomes for this population when hospitalized for medical conditions. Information on hospitalizations of individuals with ID would he useful in guiding efforts to improve hospital care for individuals with ID.

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Purpose The purpose of tbis study was to determine tbe most common reasons for bospitalization, need for intensive care wbile hospitalized, and outcomes of length of stay and complications for adult individuals (age S: 18) witb ID at academic medical centers, using a retrospective review of UHC (formerly known as University Healthsystem Consortium) data.

Hypothesis The bypotbesis of this study was that tbere would be differences in tbe reasons for hospitalizations and differences in percentage witb intensive care unit (ICU) days, average lengtb of stay, and percentage witb complications between adults witb and without ID.

Methods Data Data were obtained from tbe UHC clinical database; tbe UHC is an alliance of 115 U.S. academic medical centers and 300 of tbeir affiliated bospitals tbat provides bencbmarking data for clinical and operational improvement purposes. Data are available on patient populations and outcomes, including intensive care use, lengtb of stay, and complications (UHC, 2013).

Design The study is a descriptive study of admissions of adult individuals with ID (N= 39,397) and without ID (N= 7,847,560) reflected in UHC data for tbe time period of July 1, 2011, tbrougb June 30, 2013.

Sample International Classification of Diseases, 9tb Revision, Clinical Modification (ICD-9-CM; National Center for Healtb Statistics, 2011) diagnosis codes representing intellectual disability (as secondary diagnoses) were used to identify patients witb ID. Diagnosis codes used in our definition of ID included: 317, mild mental retardation; 318.x, otber specified mental retardation; and 319, unspecified mental retardation.

Measures Descriptive information about bospitalized adult individuals witb ID included (a) tbe 10 most common discbarge base Medicare Severity Diagnosis Related Groups (MS-DRGs). Tbe discbarge MSDRG is tbe principle diagnosis valid on tbe date of

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discbarge. Base MS-DRGs collapse groups of DRGs together (tbe same condition witbout complications, witb complications, and witb major complications; American Hospital Directory, 2012); (b) number of patients witb tbis discharge base MSDRG for adult individuals witb ID and witbout ID; (c) percentage of adult individuals witb ID in total patients witb this discharge base MS-DRG; (d) percentage of adult individuals witb ID witb tbis discbarge base MS-DRG among all adult individuals witb ID and percentage of adult individuals without ID with this discharge base MS-DRG among all adult individuals witbout ID; (e) mean lengtb of stay (LOS) observed (calculated from tbe day of admission to tbe day of discbarge for an inpatient episode of care); (f) mean LOS expected (expected LOS computed witb a multiple regression model using severity of illness and risk of mortality levels for eacb patient and variables sucb as age, gender, etbnicity, admission source, transfer status, admission tbrough emergency room, number and type of comorbidities, and socioeconomic status to predict LOS based on a standard population; Meurer, 2009); (g) LOS index (ratio of observed to expected LOS) witb statistical significance; (b) percentage of patients wbo bad ICU stays (Intensive care days are days in an intensive care unit during an inpatient episode of care.); and (i) percentage of patients witb one or more complications. Complications are potentially avoidable conditions not present on admission sucb as acquired decubiti, bealtb careacquired infections, lung injury due to medical care, equipment left in tbe body during surgery, postoperative pneumonia, and otbers (Murray, Griswold, Sunesara, &. Smitb, 2012). Gomplication computations are risk adjusted for patient diagnoses and procedures (Meurer, 2009).

Analysis Descriptive statistics were calculated on tbe top 10 MS-DRGS among patients witb ID and tbe same 10 MS-DRGs for patients witbout ID including tbe percentage of patients witb tbe 10 base MS-DRGs among patients witb and witbout ID, tbe mean observed LOS for patients witb eacb of tbe 10 MSDRGs, expected LOS, tbe LOS index, wbetber the difference between expected and observed LOS is statistically significant, percentage of patients witb IGU stays, and percentage of patients with one or more complications. Chi-square statistics were used to determine difference between patients

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with and without ID for percentage of patients with ICU stays and percentage of patients with one or more complications.

Results The most frequent MS-DRG for adult individuals with ID was psychoses ( 16.9% of total discharge MSDRGs of all adult individuals with ID), followed hy seizure disorders (7.9% of total), septicemia (5.4% of total), respiratory infections (3.1% of total), pneumonia (2.8% of total), kidney and urinary tract infections (2.4% of total), gastrointestinal (GI) disorders (2.3% of total), nutritional and metaholic disorders (1.9% of total), renal failure (1.6% of total), and Gl obstructions (1.6% of total). The five most common discharge hase MS-DRGs for adult individuals with ID compared to adults without ID for the same discharge hase MS-DRGs are presented in Tahle 1. Together the five most common discharge hase MS-DRGs accounted for 36% of hospitalizations of adult individuals with ID. For adult individuals without ID, psychosis was the second most common reason for hospitalization (following vaginal deliveries) and septicemia was the fifth most common reason for hospitalization (following joint replacements [third] and GI disorders [fourth]). For four of the five MS-DRGs, the difference hetween ohserved and expected mean LOS was statistically significant for hoth adult individuals without ID and adult individuals without ID. A statistically higher percentage adult individuals with ID had ICU stays compared with adults without ID for three of the five hase discharge MS-DRGs ip < .01), and a statistically higher percentage had one or more complications for three of the five base MS-DRGS {p < .01). There were some limitations to the present study. The study used UHC data to identify information ahout hospital admissions of adult patients with ID. It is possihle that not all patients with ID had a secondary diagnosis code for ID entered that would identify their information. Thus the data may not capture all the information ahout adult individuals with ID.

Discussion Tlie five most common discharge base MS-DRGs for adult individuals with ID admitted to academic medical centers in the United States were psychoses, seizure disorders, septicemia, respiratory infections, and pneumonia. Similarities to adult individuals without ID were found; two of the top five discharge

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hase MS-DRGs were the same, psychoses and septicemia. In addition, for four of five MS-DRGs, hoth patients with and without ID had statistically higher ohserved LOS than expected LOS. The statistically higher percentages of adult individuals with ID with ICU stays and with complications for some of the hase discharge MS-DRGs indicate some differences in outcomes hetween adult individuals with and without ID. Health care in the United States is fragmented, with poor relationships hetween care recipients, providers and systems, poor information flow, competing entities, and incentives not geared to quality care (Cehul, Rehitzer, Taylor, & Votruha, 2008). The differences in outcomes of LOS and complications indicate that the challenges in the health care system are magnified for individuals with ID. Backer, Chapman, and Mitchell (2009) conducted an integrative literature review of research on issues that influence access to acute and hospital care and on evaluation of interventions to improve such access for people with ID. Access issues included factors related to individuals with ID, such as fear of going to the hospital and communication needs; factors related to the role of caregivers, such as nonrecognition of their knowledge and experience hy hospital staff; the attitudes, knowledge, and communication of hospital staff; and physical environment factors, such as poor layout. Recommendations hased on the integrative review included liaison systems for better coordination of care, improvement of current systems including specific protocols for this population, improvement of staff attitudes and knowledge, improvement of communication and information sharing, and improvements to the physical environment (Backer et al., 2009). The 2001 surgeon general report. Closing the Gap: A National Blueprint to Improve the Health of Persons With Mental Retardation, stressed the impor-

tance of evidence-hased standards of health care for the population of individuals with ID. Information ahout common reasons for hospitalization for individuals with ID may assist in identifying issues to he addressed hy improved liaison systems, as well as health issues in need of standards of care and protocols. Attention to improving hospital care may include the need to improve communication and information sharing systems. Backer et al. (2009) also indicated the need for improved staff knowledge and attitudes. Health care providers receive little education ahout the health care needs of individuals with ID.

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Hospitalization of Adults With ID

INTELLECTUAL AND DEVELOPMENTAL DISABILITIES 2014, Vol. 52, No. 3, 187-192

Education about specific acute care needs of individuals with ID may provide examples for health care professionals about the overall acute care needs of individuals with ID. The findings of this study have implications for primary care. The most common discharge base MS-DRG for adult individuals with ID was psychoses, and it was the second most common for adult individuals without ID. Treatment of cooccurring psychoses is important among individuals with ID. For psychoses, adults with ID also had a statistically higher percentage with ICU stays and a statistically higher percentage with complications than adult individuals without ID. In addition, a population-based study found the prevalence of psychoses among individuals with ID to be 2.6%4.4%, with a 2-year first episode incidence of 0.5%; the standardized first episode incidence ratio was 10.0 compared with the general population. The authors discussed the need for further study of psychoses among individuals with ID and for educating mental health professionals about their needs (Cooper et al., 2007). The findings of this study and previous studies indicate a need for specific protocols in managing the care of individuals with ID and co-occurring psychoses. Seizure disorders were the second most common discharge base MS-DRG for adult individuals with ID. This may be related to the findings of the Balogh et al. (2010) study, which indicated a risk ratio for hospitalization for seizures of 54 for individuals with ID versus individuals without ID. In addition, population-based studies have indicated the prevalence of seizures among individuals with ID to be 18%-26% (Matthews, Weston, Baxter, Eelce, &. Kerr, 2008; McGrother et al., 2006). The findings of this study also reinforce the importance of comprehensive seizure care for individuals with ID and co-occurring seizure disorders. Septicemia was a common reason for hospitalization for adult individuals with ID. Similar to individuals who are elderly and/or have immune system complications (Baldwin, 2006), individuals with ID may be at increased risk of septicemia and may benefit from efforts at prevention and early identification. Respiratory conditions and pneumonia were also common reasons for hospitalization in this study. Of note, a population-based study in Finland that examined mortality data over a 35-year period found respiratory conditions to be the second most common cause of death among

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©AAIDD DOI: 10.1352/1934-9556-52.3.187

individuals with ID (Patja, Moisa, &. Iivanainen, 2001). The prevention and treatment of acute respiratory conditions among individuals with ID is indicated. As the five most common discharge base MSDRGs account for 36% of hospitalizations of adult individuals with ID, efforts to improve primary care to prevent hospitalizations for these conditions may assist in reducing hospitalization rates for individuals with ID. Findings on the differences in hospitalization outcomes between individuals with and without ID further indicate the need for evidence-based standards of care for this population.

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BoUands, R., & Jones, A. (2002). Improving care for people with learning disabilities. Nursing Times, 98, 38-39. Cebul, R. D., Rebitzer, ]. B., Taylor, L. J., & Votruba, M. (2008). Organizational fragmentation and care quality in the U.S. health care system, journal of Economic Perspectives, 22{A),

93-113. Retrieved ftom http://www.nber.org/ papers/wl4212 Cooper, S. A., Smiley, E., Morrison, J., Allan, L., Williamson, A., Finlayson, J., ... Mantry, D. (2007). Psychosis and adults with intellectual disabilities: Prevalence, incidence, and related factors. Social Psychiatry & Psychiatric Epidemiology, 42(7), 530-536.

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consensus development conferences, journal of Learning Disabilities, 8, 30-40.

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Lin, J. A., Liao, C. C , Chang, C. C , Chang, H., & Chen, T. L. (2011). Postoperative adverse outcomes in intellectually disahled surgical patients: A nationwide population-based study. PLoSOne, 6(10):e26977. doi: 10.1371/journal pone.00269707 Matthews, T,, Weston, N., Baxter, H., Felce, D., & Kerr, M. (2008). A general practice prevalence study of epilepsy among adults with intellectual disabilities and of its association with psychiatric disorder, behavior disturbance and carer stress. Journal of intellectuuL Disability Research,

52, 163-173. McConkey, R., & Truesdale, M. (2000). Reactions of nurses and therapists in mainstream health services to contact with people who have learning disabilities. Journal of Advanced Nursing 32(1), 158-163, McCrother, C. W., Bhaumik, S., Thorp, C. F., Hauck, A., Branford, D., & Watson, J. M. (2006). Epilepsy in adults with intellectual disabilities: Prevalence, associations and service implications. Seizures, 15(6), 376-386. Meurer, S. (2009, Fehruary). Mortality risk adjustment methodology for University Health System's clinical data base. Rockville, MD:

Agency for Healthcare Research and Quality. Retrieved firom http://www.ahrq.gov/professionals/ quality-patient-safety/quality-resources/tools/ mortality/Meurer.html Murray, A. S., Griswold, M., Sunesara, I, &. Smith, E. (2012). Comparison of patient outcomes in academic medical centers with and without value analysis programs. Journal of Healthcare Leadership, 4, 93-105. doi: http://dx.doi,org/10. 2147/JHL.S30421. Retrieved from http://www. dovepress.com/comparison-of-patient-outcomes-

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cUnicd moàfication (ÍCD-9-CM). Atlanta, GA: Centers for Disease Control and Prevention. Retrieved from ftp://ftp.cdc.gov/puh/Health_ Statistics/NCHS/Publications/1CD9-CM/2011/ Patja, K., Moisa, P., & Iivanainen, M. (2001). Cause-specific mortality of people with intellectual disability in a population-based, 35-year follow-up study. Journal of Intellectual Disability

Research, 45(Pt. 1), 3 0 ^ 0 . Sowney, M., & Barr, O. G. (2006). Caring for adults with intellectual disahilities: Perceived challenges for nurses in accident and emergency units. Journal of Advanced Nursing, 55(1), 36-45.

UHC. (2013). About UHC. Retrieved from https:// www.uhc.edu/12443.htm U.S. Public Health Service. (2001). Closing the gap: A national blueprint for improving the health of individuals with mental retardation (Report of the

Surgeon General's Conference on Health Disparities and Mental Retardation). Washington, DC: U.S. Department of Health and Human Services, Office of the Surgeon General Webber, R., Bowers, B., & Bigby, C. (2010). Hospital experiences of older people with intellectual disability: Responses of group home staff and family memhers. Journal of Intellectual and Devehpmental Disability, 35(3), 155-164.

Received 21 ¡812013, accepted 719/2013. The authors wish to acknowledge the funding support of the Center for Clinical Research and Scholarship at Rush University Medical Center and the Gamma Phi Chapter of Signia Theta Tau.

Authors: Sarah H. Ailey, Tricia Johnson, Louis Fogg, and Tanya R. Friese, Rush University Medical Center.

Correspondence concerning this article should he addressed to Sarah H. Ailey, Rush University Medical Center, Department of Community, Systems, and Mental Health Nursing, 600 S. Paulina #1080, Chicago, IL 60612 (e-mail Sarah_H_Ailey@ rush.edu).

Hospitalization of Adults With ID

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Hospitalizations of adults with intellectual disability in academic medical centers.

Individuals with intellectual disability (ID) represent a small but important group of hospitalized patients who often have complex health care needs...
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