Abstract
Data on the utilization of occupational therapy among patients with brain tumors have been limited to those with malignant tumors and small samples of patients outside North America in specialized palliative care settings. We built on this research by examining the characteristics of patients with brain tumors who received postacute occupational therapy services in Ontario, Canada, using health care administrative data. Between fiscal years 2004–2005 and 2008–2009, 3,199 patients with brain tumors received occupational therapy services in the home care setting after hospital discharge; 12.4% had benign brain tumors, 78.2% had malignant brain tumors, and 9.4% had unspecified brain tumors. However, patients with benign brain tumors were older (mean age = 63.3 yr), and a higher percentage were female (65.2%). More than 90% of patients received in-home occupational therapy services. Additional research is needed to examine the significance of these differences and to identify factors that influence access to occupational therapy services in the home care setting.
Keywords
Every year, approximately 20,000 people in the United States are diagnosed with a brain tumor, and more than 600,000 are estimated to be surviving with a brain tumor (Porter, McCarthy, Freels, Kim, & Davis, 2010; U.S. Cancer Statistics Working Group, 2013). In addition to serious health problems, patients with brain tumors experience cognitive and functional deficits including headaches, memory loss, and motor and language difficulties (Vargo, 2011). Despite these impairments, detailed information, such as temporal trends and provincial data on brain tumors within Canada, is currently lacking because brain cancer is not one of the more common cancers (Canadian Cancer Society’s Steering Committee on Cancer Statistics, 2012).
Brain tumors can be benign or malignant. Benign brain tumors are slow growing with well-defined borders and do not invade surrounding tissue, whereas malignant brain tumors are fast growing with poorly defined borders and can invade surrounding tissue (Bauman & Macdonald, 2007). Although people with malignant brain tumors have worse survivorship than those with benign tumors, benign brain tumors can also pose a serious health threat because they can be difficult to resect, are prone to recur, and have a tendency to transform into malignant tumors over time. Consequently, patients with benign brain tumors typically have a prolonged recovery period with significant disability as they undergo treatment (Vargo, 2011).
Current surveillance activity in Canada does not include benign brain tumors, and information on access to health care services to date has focused only on patients with malignant brain tumors. More important, this information is limited, having been based on small clinic-based samples of occupational therapy use in specialized palliative care settings (Arber, Faithfull, Plaskota, Lucas, & de Vries, 2010; Faithfull, Cook, & Lucas, 2005).
Surgery, radiation, and chemotherapy have been identified as methods of treatment of both new and recurrent brain tumors (Vargo, 2011). These treatments have been shown to be effective, contributing to an increase in survival rates over time (Porter et al., 2010). However, brain tumors can result in neurological issues, and the side effects of treatment include fatigue, anxiety, confusion, and depression (Vargo, 2011), which can interfere with patients’ return to work and engagement in life activities (Crist, 2013). Occupational therapy may address these concerns by assisting with activities of daily living, energy conservation, anxiety management, pain and symptom control, and fatigue reduction (Penfold, 1996) and providing work-related support (Crist, 2013). In Canada, occupational therapy services are provided in the home care, hospital, rehabilitation, and long-term and chronic care settings (Service Canada, 2013).
The objective of this study was to identify patients with malignant, benign, and unspecified brain tumors who received publicly funded occupational therapy services posthospitalization in the home care setting in the Canadian province of Ontario between fiscal years 2004–2005 and 2008–2009 and to describe the demographic and clinical characteristics of those patients. To the best of our knowledge, this is the first population-based study to examine this research objective. Study findings will provide the foundation for further research on access to and receipt of postacute care health care services by people with brain tumors and will have implications for program planning for these patients, in particular those with benign and unspecified brain tumors.
Method
Study Design and Data Sources
This was a retrospective cohort study of hospitalized patients with benign, malignant, and unspecified brain tumors who were discharged alive and subsequently received occupational therapy services in the home care setting in the Canadian province of Ontario between April 1, 2004, and March 31, 2009. Acute care data were pulled from the Discharge Abstract Database (DAD), and data on access to publicly funded occupational therapy services were obtained from the Home Care Reporting System (HCRS). Both the DAD and the HCRS data are maintained by the Canadian Institute for Health Information (CIHI) and were obtained from the Ontario Ministry of Health and Long-Term Care (MOHLTC). Data collection for the DAD and HCRS is mandatory in Ontario.
Each record in the DAD includes demographic and clinical information on all hospital admissions and discharges, including deaths and transfers, using standard diagnosis, procedure, and intervention codes. Data quality in the DAD has been assessed using chart reabstraction, indicating good agreement for nonclinical variables and moderate to substantial agreement for the diagnosis most responsible for the acute care length of stay (LOS; Juurlink et al., 2006).
The HCRS supplies information on the various types of organizations providing publicly funded home care services. Data collection includes standardized client-specific clinical, demographic, administrative, and resource utilization information. Data are of high quality overall and exhibit expected patterns of consistency both within and across assessment records (CIHI, 2012).
This study included all patients with brain tumors who were discharged alive from the hospital and subsequently received occupational therapy services in a home care setting. Specifically, all patients with brain tumors were identified in the DAD by the presence of an International Classification of Diseases and Related Health Problems, 10th revision (ICD–10; World Health Organization, 2010), code for brain tumor in any of the 25 diagnostic fields and linked to the HCRS for information on access to occupational therapy services in a home care setting. Brain tumor diagnoses were categorized as malignant (C70, C71, C79.3, C79.4), benign (D32.0, D33.0, D33.1, D33.2, D33.3), and unspecified (D42.0, D43.0, D43.1, D43.2).
Variables
Eight demographic and clinical characteristics were examined: (1) age, (2) sex, (3) score on the Charlson Comorbidity Index (CCI; Charlson, Pompei, Ales, & MacKenzie, 1987), (4) presence of psychiatric comorbidity, (5) LOS in acute care, (6) number of alternate-level-of-care (ALC) days, (7) number of special-care days (SCDs), and (8) location of occupational therapy services delivered.
Age was categorized into <20 yr, 20–39 yr, 40–59 yr, and ≥60 yr. The CCI, categorized into scores of 0–1 (low), 2–3, and ≥4 (high), was used to analyze the severity of comorbidities. It has been widely accepted as a useful tool for measuring comorbidity in disease and has been shown to have a consistent correlation with in-hospital mortality (Sundararajan et al., 2004). CCI scores were identified using the DAD’s 25 diagnostic fields, which indicated health conditions present at the time of the brain tumor hospitalization and included myocardial infarction, congestive heart failure, peripheral vascular diseases, cerebrovascular diseases, dementia, chronic obstructive pulmonary disease, diabetes, connective tissue disease, peptic ulcer disease, diabetes mellitus, chronic kidney disease, hemiplegia, leukemia, malignant lymphoma, solid tumors, liver disease, and AIDS (Charlson et al., 1987). Psychiatric comorbidities were also identified using the 25 DAD diagnostic fields.
LOS in acute care was defined as the number of days between admission and discharge. ALC days were defined as days in which a patient occupied a hospital bed but could have been appropriately cared for in a less intensive setting (CIHI, 2009). SCDs were defined as the cumulative number of days spent in an intensive care unit (ICU). The location in which occupational therapy services were delivered was categorized into private household or residential care, long-term care, or educational facilities.
Statistical Analysis
Descriptive analyses were conducted to determine the demographic and clinical characteristics of patients who received occupational therapy services in the home care setting after hospitalization between fiscal years 2004–2005 and 2008–2009. Because patients can receive occupational therapy services more than once after discharge from acute care, the number of unique individuals using occupational therapy services was identified for this article. All analyses were performed using SAS Version 9.2 (SAS Institute, Cary, NC).
Results
From fiscal year 2004–2005 to 2008–2009, 3,199 patients with a brain tumor diagnostic code received occupational therapy services in the home care setting after hospitalization. During this period, occupational therapy services were delivered 15,653 times, or 2.9% of all home care services delivered during this period. The majority of patients with brain tumors had malignant brain tumors (78.2%); 12.4% had benign brain tumors, and 9.4% had unspecified brain tumors. The average age of these patients was 59.6 yr (standard deviation [SD] = 17.1), and the sex distribution was approximately equal (52.8% women, 47.2% men). More than 80% had a CCI score of ≥2, 6.3% had psychiatric comorbidities, 29.3% had SCDs, and 7.3% had ≥1 ALC day. The average LOS in acute care was 11.7 days (SD = 17.2). Approximately 93% of patients received occupational therapy services at home (Table 1).
Participant Characteristics by Type of Brain Tumor
Note. LTC = long-term care; OT = occupational therapy.
Among patients with a benign brain tumor diagnostic code (n = 396), 65.2% were female. The average age of both male and female patients was 63.3 yr (SD = 17.6). Approximately 18% had a CCI score of ≥2, 12.1% had psychiatric comorbidities, 46.1% had SCD, and 18.9% had ≥1 ALC day. The average LOS in acute care was 17.2 days (SD = 34.5). Approximately 96% of patients received occupational therapy services at home (see Table 1).
Among patients with a malignant brain tumor diagnostic code (n = 2,502), approximately half were female. The average age of these patients was 59.0 yr (SD = 16.4). All of the patients had a CCI score of ≥2, 5.2% had psychiatric comorbidities, 28.2% had ≥1 SCD, and 5.8% had ≥1 ALC day. The average LOS in acute care was 11.2 days (SD = 13.1). Approximately 93% of patients received occupational therapy services at home (see Table 1).
Among patients with an unspecified brain tumor diagnostic code (n = 301), 47.8% were female. The average age of these patients was 60.2 yr (SD = 20.9). Fifteen percent had a CCI score of ≥2, 7.6% had psychiatric comorbidities, 16.7% had ≥1 SCD, and 5.3% had ≥1 ALC day. The average LOS in acute care was 8.8 days (SD = 10.7). Ninety-four percent of patients received occupational therapy services at home (see Table 1).
Discussion
This article is the first, to the best of our knowledge, to identify from a population-based perspective the characteristics of patients with benign, malignant, and unspecified brain tumors who received occupational therapy services after discharge from acute care. To date, only studies outside of North America using a small and localized sample of patients with malignant brain tumors (Arber et al., 2010; Faithfull et al., 2005) have examined occupational therapy service use.
During the study period, occupational therapy services made up 2.9% of all home care services delivered to patients with brain tumors after hospitalization in Ontario. This low proportion may be due to several reasons. First, the referral process for patients in Ontario may act as a barrier to the receipt of care, because occupational therapy services and referrals are processed by a variety of agencies, including Veterans Affairs, Family Health Teams, Community Care Access Centers, and hospitals (Service Canada, 2013). Thus, if patients are not referred to one of these agencies, they may not receive occupational therapy services.
Second, treatment wait times may play a role: The average wait for occupational therapy services in Ontario is approximately 15 days and can exceed 60 days (Passalent, Landry, & Cott, 2010). As such, patients discharged from acute care during the study period but with longer wait times for occupational therapy services would not be captured in this study because of the limited fiscal years of data available for linkage to the HCRS, resulting in missed cases. Moreover, findings showed that almost 50% of patients with benign brain tumors (vs. 28.2% of those with malignant tumors and 16.7% of those with unspecified tumors) spent ≥1 day in the ICU, and almost 20% of patients with benign brain tumors had ≥1 ALC day (vs. 5% of those with malignant and unspecified brain tumors). The prolonged recovery period in the ICU and the wait for an appropriate discharge setting may also have delayed receipt of occupational therapy services. Consequently, it is plausible that with additional years of data, a higher number of patients, especially those with benign brain tumors, may have accessed occupational therapy services after hospitalization.
Third, there is currently a shortage of occupational therapy practitioners in Canada, despite a high number of graduates entering the field (Service Canada, 2013), and a lower number of occupational therapy practitioners in smaller city centers and in rural and northern Ontario (Ministry of Training, Colleges and Universities, 2013). Identifying the geographic location of residence may have implications for the planning of occupational therapy services for patients in Ontario.
Nonetheless, the inclusion of patients with benign and unspecified brain tumors provided important insights into these populations. In particular, it showed different profiles for patients with malignant, benign, and unspecified brain tumors. The sex distribution of patients who received occupational therapy services differed, with a higher percentage of women with benign brain tumors. Although this difference may be due to a higher incidence of benign brain tumors in women (Porter et al., 2010), additional analyses by sex can provide information on the importance of sex in access to occupational therapy services, because research on the stroke population has suggested that being female is associated with adverse outcomes that may hinder the rehabilitation process (Paolucci et al., 2006).
Moreover, comorbidities are well known to influence access to health care services. This study examined comorbidities through CCI score and the presence of psychiatric comorbidities. Note that one of the CCI comorbidities is metastatic cancer, which therefore explains why all patients with malignant brain tumors had a CCI score of ≥2. However, almost one-fifth of patients with benign brain tumors and 15.0% of those with unspecified brain tumors had a CCI score of ≥2, suggesting that other types of comorbidities also exist. Moreover, more than 10% of patients with benign brain tumors had psychiatric comorbidities. Understanding the influence and type of comorbidities can improve access to occupational therapy services and can assist occupational therapists in planning services for and working with patients with any type of brain tumor.
Study Strengths and Limitations
Limitations associated with the use of administrative data must be recognized. First, patients who received occupational therapy services in the home care setting beyond the fiscal years of data that were obtained from the MOHLTC would have been missed. Second, home care and access to occupational therapy services may be influenced by the availability of social support; studies have identified the benefits of including social support for rehabilitation and occupational therapy (Isaksson & Hellman, 2012). However, this variable was not available in our data. In addition, because data from the DAD and HCRS include only publicly funded health care services, patients who received privately funded occupational therapy services would have been missed, as would those who received occupational therapy services outside of the home care setting (e.g., inpatient rehabilitation) because only occupational therapy services in the home care setting were examined. Statistical tests are needed to determine whether certain factors significantly influence access to occupational therapy services, as has been demonstrated in previous studies on the health service utilization of patients with other types of acquired brain injuries (e.g., Chen et al., 2012).
Finally, retrospective document review has limitations as a research design. For example, additional variables of interest, such as ethnicity and functional status, detailed information on the type of occupational therapy services received, duration of occupational therapy service, and occupational therapy discharge planning, are unavailable because the information collected is predetermined and based on what is available in the health care administrative data.
Nonetheless, we used health care administrative data that are mandatory in the province of Ontario. As a result, this study captured every patient with a brain tumor diagnostic code in acute care who received occupational therapy services in a home care setting after discharge from the hospital. Moreover, the linkage of data sources used for this study allowed for the extraction of demographic and clinical information for patients who accessed these occupational therapy services, which would have been missed if only the home care data were used. This is also the first study, to the best of our knowledge, to include patients with benign and unspecified brain tumors, which are currently not tracked in surveillance activity in Canada.
Finally, given that Ontario is the most populous province in Canada, representing approximately 40% of the Canadian population, trends in Ontario can inform other provinces in Canada as well as other countries with a publicly insured population (Statistics Canada, 2012). Surveillance of patients with all types of brain tumors is important, and additional research with patients with different types of brain tumors can inform delivery and planning of occupational therapy services for this population.
Implications for Occupational Therapy Practice
The results of this study have the following implications for occupational therapy practice:
Additional in-depth research on patients who receive occupational therapy services in the home care setting after discharge from the hospital should be conducted, including predictors of receiving postacute occupational therapy services and discharge destinations for this population
As survival rates increase, occupational therapy may play a greater role in the recovery of clients with brain tumors.
Recognizing the characteristics of clients with different types of brain tumors may assist in the planning of services for this population.
Footnotes
Acknowledgments
We thank the MOHLTC for providing us with the data. The views expressed in this manuscript are those of the Principal Researcher and do not necessarily reflect those of Ontario or the Ministry. This study was funded by the Judith Friedland Fund for Occupational Therapy in Oncology and Palliative Care, University of Toronto. Angela Colantonio received support through the Canadian Institutes of Health Research (CIHR) Chair in Gender, Work and Health (grant no. CGW–126580). Vincy Chan received support from the CIHR and Pediatric Oncology Group of Ontario for a Doctoral Research Award, Brain Canada–CIBC for a Brain Cancer Training Award, and the Jane Gillett Pediatric ABI Studentship from the Ontario Neurotrauma Foundation.