Patients with autism spectrum disorder and/or intellectual disability (ASD/ID) experience significantly longer hospital lengths of stay (LOS) than patients without ASD/ID. In one study with approximately 26,000 hospitalizations among individuals with ASD, these patients had significantly longer LOS compared to patients without ASD (6.5 days versus 4.2 days; p < 0.0001) (Lokhandwala, Khanna, & West-Strum, 2012). In another study, 3.4% of hospitalized patients with ASD/ID had stays ≥30 days (Johnson, Ailey, & Hohmann, 2018). The problem of prolonged LOS was highlighted in an article published by the Washington Post, noting a nationwide increase in the number of patients with ASD/ID who had excessive hospital LOS and the lack of resources for care in the community, particularly following the 2008 economic crisis and cuts at federal, state, and local levels for mental health and developmental services (Jewitt, 2017).
The purpose of the current study was to explore factors related to prolonged LOS in an urban academic medical center for patients with ASD/ID using retrospective chart reviews of 10 patients with LOS ≥30 days.
A literature review was conducted to provide guidance on reviewing charts for potential factors related to prolonged LOS and on what recommendations might be made from the chart reviews. PsycInfo, CINAHL, and PubMed databases were searched. Searches were conducted using the terms autism or intellectual disabilities and hospitalizations. A total of 875 records (including duplicates and books/book chapters) dating from the 1970s were found. With the search term length of stay, a total of 337 records were found. Only records from 2008 to 2018 were kept. Articles on forensic stays; neonatal hospital stays; comparisons of general versus ASD/ID specialized psychiatric units; the effects of specific legislation, such as the Mental Health Act in the United Kingdom; and research on hospitalization statistics related to health systems in specific countries were excluded. Articles on prolonged LOS among children with ASD/ID were kept because of limited literature on the topic.
Twenty-six articles were kept for review. The following themes were identified: Reasons for Hospitalizations; Factors Related to Prolonged Lengths of Stay; Perceptions of Hospital Care by Caregivers, Patients, and Hospital Staff; and Current Strategies and Outcomes. Review of the literature informed the choice of variables to be addressed in the retrospective chart review.
Reasons for Hospitalizations
Little is written on common reasons for hospitalization of patients with ASD/ID. The most common reasons for hospitalization are mental health, followed by seizures and septicemia (Ailey, Johnson, Fogg, & Friese, 2014). Other common reasons include gastrointestinal conditions (including constipation and bowel obstructions), nutritional problems, kidney and urinary tract infections, respiratory infections, and pneumonia (Ailey et al., 2014; Carbone, Young, Stoddard, Wilkes, & Trasande, 2015). Among adults, the third most common reason for admission was septicemia, with kidney and urinary tract infections, respiratory infections, and pneumonia also being among the top 10 reasons for hospitalization (Ailey et al., 2014). Injuries were a common reason among adolescents and young adults (Kalb, Beasley, Klein, Hinton, & Charlot, 2016). The presence of any feeding difficulties increases the risk of emergency department use and increases the cost of hospitalization (Venkat et al., 2011). Adults and children with ASD/ID are more likely to be hospitalized for ambulatory care sensitive conditions than adults and children without ASD/ID (Balogh, Brownell, Ouellette-Kuntz, & Colantonio, 2010; Carbone et al., 2015).
Factors Related to Prolonged Lengths of Stay
The only research found on factors related to prolonged LOS were among adults and children hospitalized on psychiatric units. In one study, longer LOS of patients with ASD/ID on a specialized psychiatric unit was associated with medical comorbidities, the most frequent being constipation and gastroesophageal reflux disease (Charlot et al., 2011). In another study of patients with ASD/ID hospitalized in a specialized psychiatric unit, longer LOS was related to problems discharging patients to community services (Gopalakrishna, Ithman, & Malwitz, 2015). Predictors of prolonged LOS on psychiatric units also include the use of restraints and presence of mood or psychotic disorders (Gopalakrishna et al., 2015).
Perceptions of Hospital Care by Caregivers, Patients, and Hospital Staff
Individuals with ASD/ID, their caregivers, and health care providers report problems in hospital care including: perceptions of negative attitudes by hospital staff, delays in diagnostic evaluation and treatment, problems in communication, ability to address specific sensory needs, flexibility of providers and health care organizations in managing individuals with ASD/ID, and reliance on family and paid caregivers for care (Gibbs, Brown, & Muir, 2008; Muskat et al., 2015; Webber, Bowers, & Bigby, 2010). In a systematic review of hospital experiences of individuals with ID (Iacono, Bigby, Unsworth, Douglas, & Fitzpatrick, 2014), problems found across research studies included: staff uncertainty regarding how to care for the population, staff lacking skills for managing challenging behavior, and challenges in coordinating post-discharge care.
Current Strategies and Outcomes
No standard practices are established for inpatient admissions for patients with ASD/ID and research on the topic is limited (Iacono et al., 2014; Richings, Cook, & Roy, 2011). Individuals with ASD/ID, their caregivers, and health care providers express that providers who recognize families as having expertise, inquire about the specific needs of patients, and implement strategies that accommodate the unique needs of individual patients are helpful (Muskat et al., 2015). Various institutions have developed specific strategies to improve care for patients with ASD/ID (Ailey, Brown, & Ridge, 2017; Carter et al., 2017; Iacono et al., 2014). Potential best practices discussed in the literature include having patient liaisons/navigators assist in the coordination of care of this population, care plans specific to the population (i.e., standardized gathering of patient-specific information on communication style; preferences of patients regarding schedules, foods, and how to take medications; sensory issues; issues likely to be antecedents to behaviors; ways to calm the patient; and role of caregiver, along with evidence-based tips on managing patients), enhanced education of staff, and education of health care students (Ailey et al., 2017; Friese & Ailey, 2015; Iacono et al., 2014; Perkes, 2018; Trollor et al., 2016). At some institutions, individuals with ASD/ID participate in educational programs for medical and nursing students (Coret, Boyd, Hobbs, Zazulak, & McConnell, 2018; Thomas, Courtenay, Hassiotis, Strydom, & Rantell, 2014; Tracy & Iacono, 2009). Autism-specific care pathways, including training of staff; use of a tip sheet on which information about the communication skills, behaviors, and preferences of patients with autism are gathered; and use of a toolkit that includes sample materials for patients (e.g., visual calendar, first/then cards, coping cards) and sample materials for staff (e.g., staff schedule, activity ideas, a method to assess irritability) have shown some success in reducing LOS and crisis interventions among patients with autism at a pediatric acute psychiatric system (Kuriakose et al., 2018). Efforts to recognize coexisting conditions that may be related to behaviors, such as unrecognized pain, may also improve outcomes of psychiatric hospitalizations among this population (Guinchat et al., 2015).
The use of restraints among individuals with ASD/ID is widespread across settings (Merineau-Cote & Morin, 2013; Webber, McVilly, & Chan, 2011). Specific efforts to reduce the use of restraints with this patient population exist, with improvement related to staff cohesion in care efforts and collaboration with families and other caregivers in determining the function of behaviors and efforts to manage these behaviors (Larue, Goulet, Prevost, Dumais, & Bellavance, 2018).
This study was approved by the Institutional Review Board at the medical center under exempt review.
Previous studies have used LOS greater than the 75th percentile as a definition of prolonged LOS (Collins, Daley, Henderson, & Khuri, 1999; Wang, Stavem, Dahl, Humerfelt, & Haugen, 2014). Based on a retrospective study of patients age ≥18 discharged from academic medical center members of the Vizient Clinical Database between January 2011 and December 2016, a more conservative approach of defining prolonged LOS as greater than the 95th percentile in LOS was used. The cut-off of ≥30 days is greater than the 95th percentile, as 3.4% of the current sample had stays ≥30 days (Johnson et al., 2018). Inclusion criteria for the current retrospective chart review, conducted in May 2017, were adult patients with ICD-10 secondary diagnoses of ASD/ID admitted to a large, urban academic medical center with LOS ≥30 days. Based on time and resources available, the 10 most recent admissions meeting study criteria were chosen for inclusion.
Single Case Study Approach
Data from 10 patient charts were analyzed as clinical narrative data or case studies. As such, a single case study design was used (Gliner, Morgan, & Harmon, 2000). The theory underlying single case research design is well-described in Gliner et al. (2000). Considering the single case analysis approach, 10 case studies can be considered a large sample size. With a case study approach, information can be gathered about low-occurrence phenomena, and there is opportunity to observe these phenomena as they naturally occur. This information is useful in generating hypotheses that can be further investigated and empirically tested (Nock, Michel, & Photos, 2008).
Elements of successful retrospective case study/chart reviews include a clear definition of specific inclusion criteria, clear definition of variables, and use of a standard form created prior to beginning data collection (Panacek, 2007; Vassar & Holzmann, 2013). For the current case study/chart review, variables were selected and a standardized data collection form was created prior to commencement of data collection (Table 1). Informed by the literature review, information collected included admitting diagnosis, LOS, admission source, presence of diagnosis complications and comorbidities, global assessment of functioning, admission and discharge units, use of a safety assistant, use of restraints, behaviors requiring intervention, patient-specific standards of care, discharge disposition, and themes from nursing and social work notes. The words “barrier,” “difficult,” and “placement” were search terms in discharge planning notes. Data were collected by a graduate nursing student (A.C.) with supervision and advice from faculty (S.H.A., T.J.J.) and a statistician.
Sample Data Collection Form
Of 10 patients with a secondary diagnosis of ASD/ID and LOS ≥30 days, all had ASD. Median LOS was 52 days (range = 30 to 203 days). Median patient age was 24 (range = 18 to 47 years). Eight of 10 patients were men. Seven of 10 patients were White, and three were Black. Seven charts were coded with an ICD-10 secondary diagnosis of ASD. Of these seven charts, three also included an ICD-10 code of Asperger syndrome. The remaining three patients had secondary diagnoses of ASD and ID. All 10 patients were discharged from the adult inpatient psychiatric unit (Table 2).
Patient Demographics and Hospital Experiences (N = 10)
Three patients were initially admitted to medical units; these patients had an average 3.25 comorbid medical diagnosis complications and comorbidities. Complications are conditions arising during the hospital stay and comorbidities are preexisting conditions, both affecting treatment received and/or prolonging LOS. Medical diagnosis complications and comorbidities included epilepsy, acidosis, acute respiratory distress syndrome, diabetes insipidus, unspecified protein/calorie malnutrition, esophageal ulcer, mycoses, urinary tract infection, and acute kidney failure. Two of three patients had LOS longer than the median of 52 days. All 10 patients had comorbid medical diagnoses not considered to be diagnosis complications and comorbidities, with an average of 8.8 per patient. Examples included diabetes mellitus, cellulitis, uncomplicated asthma, dehydration, anemia, and weight loss. Three patients had patient-specific standards of care initiated (e.g., fall risk, seizure precautions). Seven of nine patients with documented global assessment of functioning scores had scores ≤50, indicating, at best, serious impairment in functioning. Two patients experienced a readmission within 30 days of discharge.
A common issue among the 10 patients was behavioral challenges that required intervention. Seven patients had 1:1 or 2:1 observation (or a safety assistant), and five patients experienced physical restraints or security assistance at some time during their stay. Four patients had an adverse event during the stay that included injury to self and injury to staff. Six patients had orders for medications such as Haldol® and Ativan® as needed for agitation and aggressive behaviors.
Five charts included notes highlighting significant barriers to placement. The use of security assistance, restraints, and as-needed medications for agitation and aggressive behaviors were noted as reasons for difficulties in finding community facilities willing to accept these patients. Some excerpts from discharge planning notes included: “The State has no facility willing to accept this patient,” “[the patient is] uninsured and is not eligible for any home health services nor placement at a facility for long-term care,” and “[the agency] does not have the staff available to provide patient with the supervision that [the patient] needs.”
Discussion and Implications
Of 10 patients with ASD/ID with prolonged LOS, all had ASD with or without ID. All 10 patients were discharged from an adult psychiatric unit, but three were originally admitted to medical units and had comorbid medical diagnosis complications and comorbidities. All 10 patients had comorbid medical conditions, and the majority had, at best, serious impairments in functioning. In accordance with the literature, placement issues and the use of such interventions as restraints were involved in prolonged LOS.
Hospital staff must have the skills needed to work with this complex group of patients and possibly reduce the use of such interventions. Improved education of staff is needed and should begin during students' training by including ASD/ID–specific content in curricula. Individuals with ASD/ID should be involved in developing and delivering staff training and student curricula. Training sessions for security personnel are also critical, as these individuals are often called to respond to challenging behavior. Health care institutions should evaluate performance with this group of complex patients and take specific measures to improve their care. Existing programs, such as patient liaisons/navigators, use of care plans specific to the population, and toolkits specific to the population, need wider dissemination. Without funding and policy changes, placement options will continue to be barriers to reducing prolonged LOS among patients with ASD/ID. Health care institutions and practitioners should take steps to have their voices heard in policy and legislative initiatives to increase community resources for individuals with ASD/ID.
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Sample Data Collection Form
|Length of stay|
|Diagnosis complications and comorbidities|
|Global assessment of functioning|
|Behaviors requiring intervention|
|Patient-specific standards of care|
|Nursing and social work notes|
Patient Demographics and Hospital Experiences (N = 10)
|Median age (years) (range)||24 (18 to 47)|
| Male||8 (80)|
| Female||2 (20)|
| White||7 (70)|
| African American||3 (30)|
| ASD||7 (70)|
| Asperger syndrome||3 (30)|
| ASD/ID||3 (30)|
|Severity of ASD/ID|
| Verbal||9 (90)|
| Nonverbal||1 (10)|
| Schizophrenia/bipolar disorder||5 (50)|
| Organic mental health disorder||2 (20)|
| Failure to thrive||1 (10)|
| Catatonia||1 (10)|
| Toxic effects of non-medicinal substance (pica)||1 (10)|
| Emergency||9 (90)|
| Elective||1 (10)|
| Adult inpatient psychiatric unit||10a (100)|
|Documented global assessment of function score ≤50||7 (70)|
| 1:1||6 (86)|
| 2:1||1 (14)|
|Restraints/security assistance||5 (50)|
|Experienced adverse eventc||4 (40)|