Patient Outcomes Associated With Tailored Hospital Programs for Intellectual Disabilities

Objectives: Hospitals have begun designing programs tailored to patients with intellectual disabilities to address their specific healthcare needs and social determinants of health. This study aimed to determine whether these programs improve hospital outcomes for patients with intellectual disabilities.

Study Design: This cross-sectional, retrospective study analyzed data for patients with a primary or secondary diagnosis of intellectual disability and/or autism who were discharged from 5 hospitals participating in Vizient’s Clinical Data Base/Resource Manager between January 2010 and September 2018.

Methods: Generalized linear regression models were constructed to test the association between tailored program status and length of stay, cost, and cost per day, and a binary logistic regression model was constructed to test the association between tailored program status and 30-day readmission. A secondary analysis stratified patients by 3M All Patient Refined Diagnosis Related Groups grouper (the standard for inpatient classification) admission severity of illness (ASOI) score.

Results: Of the 6618 patients included in the study, 29% were treated at hospitals with tailored programs. After controlling for patient demographic characteristics and clinical factors, patients treated at hospitals without programs had higher total costs (relative risk [RR], 1.06; P = .038) and cost per day (RR, 1.11; P <.001). Patients with an extreme ASOI score who were treated at hospitals without programs had significantly longer stays (RR, 1.38; P = .001), higher total cost (RR, 1.42; P <.001), and higher cost per day (RR, 1.10; P = .025) than patients treated at hospitals with programs.

Conclusions: Providing tailored programs for patients with intellectual disabilities is a promising strategy for improving inpatient care for this population.

Am J Manag Care. 2020;26(3):In Press

Takeaway Points

• Providing tailored programs for patients with intellectual disabilities is a promising strategy for improving hospital outcomes.
• After adjustment for patient demographic and clinical factors, patients treated in hospitals without such programs had 6% higher total costs and 11% higher cost per day.
• Tailored programs were associated with the largest impact for patients with extreme severity of illness upon admission; patients treated in hospitals without tailored programs had 38% longer length of stay, 42% higher total costs, and 10% higher cost per day, after adjusting for patient demographic and clinical factors.
• Future research should examine best practices in inpatient programs for these patients.

Approximately 1.2 million adults in the United States have an intellectual disability, representing 0.5% of the population 15 years or older.¹ Although they make up a small portion of the US population, those with intellectual disabilities have complex needs that stem from having limitations in intellectual functioning and adaptive behaviors.² Individuals with intellectual disabilities face barriers to receiving high-quality healthcare³ and commonly have unidentified health problems that require additional attention, such as problems with sensory impairment; behavioral, medication, or lifestyle problems; and potential health problems that require additional screening or testing.⁴

The majority of healthcare providers, however, receive little information, either during their clinical training or on the job, about how to ensure that the needs of patients with intellectual disabilities are met. In a survey of primary care nurses, just one-third indicated that they had received training on caring for patients with an intellectual disability during their initial training program and just 37% had received training after becoming a nurse.⁵ Additionally, nurses were unaware of the increased risk for many health conditions that require clinical monitoring or intervention, such as hearing or visual impairment, depression and other mental health problems, and autism. Compounding these issues, nurses have expressed less positive attitudes about patients with intellectual disabilities that may ultimately affect the quality of care.⁶ Evidence also suggests that many general practitioners, despite knowing that they serve an important role in ensuring the health of individuals with intellectual disabilities, do not routinely address the important health issues of these individuals.⁷ Clinicians have often received limited education, either as medical students or in practice, on the unique needs of this population, limiting development of the competencies and skills needed to work and experience caring for them.^8-10 Although consensus guidelines have been proposed for caring for patients with intellectual disabilities in the primary care setting,¹¹ these guidelines have not yet become the standard of care. Consensus guidelines have yet to be developed for caring for patients with intellectual disabilities in the acute care setting.

Individuals with intellectual disabilities have a similar prevalence of physical health conditions (eg, cardiovascular disease, cerebrovascular disease, lung conditions, diabetes) as other adults, yet those with moderate and severe intellectual disabilities have a life expectancy that is almost 20% shorter.^12,13 Further, this population may have slightly higher rates of hospitalization¹⁴ and poorer hospital experiences and outcomes compared with other adults. Patients with intellectual disabilities have substantially longer hospital lengths of stay, more intensive care unit admissions, and more unexpected complications compared with other patients receiving treatment for psychoses in academic medical centers¹⁵ and have higher preventable readmission rates than other adult patients.¹⁶ In a systematic review of studies on the hospital experiences of individuals with intellectual disabilities, Iacono and colleagues identified several themes that may explain poor hospital experiences, including failure to provide appropriate care, lack of knowledge and skills among hospital staff, and poor or negative attitudes about patients with intellectual disabilities.¹⁷

To address these gaps in the care provided to individuals with intellectual disabilities, a few hospitals have implemented programs tailored to this population. In the United Kingdom, researchers have recommended that hospitals use intellectual disability liaison models of care, implement specific care pathways, and educate staff on communicating with and caring for this population.¹⁸ Adoption of similar programs has taken place in the United States but on a much smaller scale.^19-21 Although research has not yet rigorously evaluated the success of these programs in improving outcomes for patients with intellectual disabilities in the United States, programs tailored to other populations who commonly experience difficulties navigating the healthcare system have improved patient care outcomes, including access, length of stay, cost, and patient satisfaction.^22-24

The objective of this study was to evaluate whether hospital programs tailored to patients with intellectual disabilities have improved outcomes, including length of stay, cost, and readmission. We hypothesized that patients would have shorter length of hospital stay, lower hospital cost of care, and lower hospital cost per day and be less likely to be readmitted when treated at hospitals with programs tailored to patients with intellectual disabilities.

METHODS

Overview

This cross-sectional, retrospective study analyzed data for patients with a primary or secondary diagnosis of intellectual disability and/or autism from 5 hospital members of Vizient’s Clinical Data Base. An amendment to an existing application was approved by the Rush University Medical Center Institutional Review Board.