Background
The main goals of palliative care are to address the physical, social, psychological, and spiritual needs of an individual with serious-illness and to support their family and other informal caregivers during the dying process [
1,
2]. Increasingly, research has focused on home-based palliative care for a number of reasons. Most patients with life-limiting illnesses prefer to receive care at home [
3], which increases the likelihood that a person will die at home if that was their preference [
4]. In addition, home-based care has been shown to improve patient satisfaction and lower costs when compared with long-term care or hospital-based care [
4]. Individuals who are considered to be seriously ill (SI) include persons with life-limiting diagnoses such as those with terminal cancer, organ failure, and Alzheimer’s dementia/other dementias and/or individuals with a short prognosis (i.e., typically less than 6 months). It is increasingly recognized that these individuals could benefit from a palliative approach to care [
5]. Therefore, end-of-life care should be relevant and appropriate for those with different types of serious illness. However, few formalized methods exist for evaluating the
quality of home-based care. Research has instead focused on the presence of home-based care services, their utilization, organization and the cost-effectiveness of these services [
6,
7]. Therefore establishing a formalized method, such as a set of standardized quality indicators (QIs) for home-based care for seriously ill clients is essential.
QIs are expressed as rates within a population and measure important health outcomes to allow for comparisons between different health care settings, providers, or geographic regions. QIs flag potential issues that can support continuous quality improvement initiatives. A recent update of a systematic review of existing QIs for palliative care identified 29 relevant papers that demonstrated indicators exist in multiple countries and capture the relevant domain areas for palliative care [
8]. For example QIs for palliative care have been developed in the USA, United Kingdom, Italy and Japan. More recent development activities are also demonstrated in other countries such Belgium [
9,
10]. In Canada, a small number of studies have proposed potential QIs focusing mainly on administrative data (e.g., hospital admissions, emergency room visits) for cancer patients [
11,
12], but not for non-cancer patients, who can also benefit from palliative care services [
13]. Therefore, despite some early work in Canada, there are no standardized QIs for palliative care services that could be reported at a local, provincial, or national level.
To address the absence of a set of Canadian QIs, the main objective of the current study was to develop a set of QIs for seriously ill home care clients based on items within the Resident Assessment Instrument for Home Care (RAI-HC), a standardized assessment used in Ontario [
14]. InterRAI assessments have previously been used to create QIs for long-term care [
15], the general home care population [
16], post-acute care [
17], and for inpatient psychiatry [
18]. These assessments are valid instruments that are used in multiple parts of Canada and internationally [
19‐
21], but currently have not been used to create QIs for seriously ill home care clients. A secondary objective was to examine the rates of these preliminary QIs for specific life-limiting diagnoses and also for each of the 14 Local Health Integration Networks (LHINs) in Ontario. These LHINs represent a distinct geographic region of Ontario and are responsible for providing health care services within that region.
Results
A total of 14,312 individuals (5.4%) were considered to be seriously ill, and within this group, 16.9% had only a prognosis of 6 months or less, 65.3% had only a score of four or higher on the CHESS scale, and 17.8% met both criteria. The remaining 249,905 (94.6%) individuals were considered as the comparison group who ere not seriously ill. The two groups were very similar on all demographic characteristics and all absolute differences were very small (Table
1). The odds ratios exceeded the 20% cut-point when comparing the two groups across all of the health index scales, and always in the direction of the seriously ill group being more likely to experience impairments or limitations. For example, 79% of the seriously ill group had moderate to severe cognitive impairment compared to 57.6% in the comparison group, a nearly three-fold increase in the odds (Table
1). Seriously ill individuals were also significantly more likely to have a life-limiting diagnosis, such as cancer (odds ratio = 3.09; 95% CI: 2.97–3.20), congestive heart failure (odds ratio = 1.88; 95% CI: 1.81–1.96), or chronic obstructive pulmonary disease/asthma/emphysema [a single item on the RAI-HC], odds ratio = 1.62; 95% CI: 1.56–1.68) (Table
1).
Table 1
Demographic health-related outcomes comparing clients who are seriously ill and not seriously ill
Age |
65–74 | 12.9 (32321) | 13.1 (1868) | Ref |
75–84 | 39.1 (97814) | 38.1 (5452) | 0.96 (0.95–1.02) |
85+ | 47.9 (119770) | 48.9 (6992) | 1.01 (0.96–1.07) |
Sex |
Male | 34.2 (85438) | 38.0 (5434) | Ref |
Female | 65.8 (164467) | 62.0 (8878) | 0.85 (0.82–0.88) |
Diagnoses |
Cancer | 13.2 (33072) | 32.0 (4580) | 3.09 (2.97–3.20) |
Congestive heart failure (CHF) | 15.4 (38479) | 25.6 (3657) | 1.88 (1.81–1.96) |
Chronic obstructive pulmonary disease (COPD) | 19.0 (47423) | 27.5 (3934) | 1.62 (1.56–1.68) |
Alzheimer’s disease or other dementia | 31.3 (78,206) | 34.9 (4991) | 1.20 (1.12–1.24) |
Depression Rating Scale |
No signs/symptoms of depression (0–2) | 81.0 (202513) | 62.7 (8968) | Ref |
Signs/ symptoms of depression (3–14) | 19.0 (47392) | 37.3 (5344) | 2.55 (2.46–2.64) |
Cognitive Performance Scale |
Intact/ Mild Impairment (0–1) | 42.4 (105928) | 21.0 (3005) | Ref |
Moderate/ Severe Impairment (2–6) | 57.6 (143933) | 79.0 (11306) | 2.77 (2.66–2.89) |
Pain Scale |
No pain/less than daily pain (0–1) | 46.1 (115252) | 35.0 (5014) | Ref |
Daily/severe pain (2, 3) | 53.9 (134644) | 65.0 (9298) | 1.59 (1.53–1.64) |
Activities of Daily Living Self-performance Hierarchy Scale |
No/mild impairment (0–1) | 79.5 (198701) | 57.5 (8228) | Ref |
Moderate/severe impairment (2–6) | 20.5 (146320) | 42.5 (6084) | 2.87 (2.77–2.97) |
Instrumental Activities of Daily Living Inventory Scale |
No/mild impairment (0–13) | 41.5 (103575) | 19.4 (2771) | Ref |
Moderate/severe impairment (14–21) | 58.6 (146320) | 80.6 (11541) | 2.95 (2.83–3.08) |
Marital status |
Never married | 4.3 (10783) | 2.9 (415) | Ref |
Married/other | 36.7 (91638) | 39.0 (5588) | 1.58 (1.43–1.75) |
Widowed/ separated/divorced | 59.0 (147484) | 58.1 (8309) | 1.46 (1.32–1.62) |
Education level |
Completed grade 11 or less | 61.1 (152758) | 62.7 (8966) | Ref |
High school | 17.0 (42384) | 16.4 (2340) | 0.94 (0.90–0.99) |
Post-secondary | 21.9 (54748) | 21.0 (3005) | 0.94 (0.90–0.98) |
Language |
English | 78.5 (196117) | 81.0 (11592) | Ref |
French | 3.0 (7559) | 3.1 (445) | 1.0 (0.90–1.10) |
Other | 18.5 (46229) | 15.9 (2275) | 0.83 (0.78–0.87) |
A list of the seven preliminary QIs, their operational definitions, and the overall rate for Ontario is shown in Table
2. Other possible QIs were dropped from further consideration including failure to achieve a sense of life completion, breakthrough pain, fatigue and sleep problems. These QIs were removed from further analysis since the RAI-HC did not include the items need to generate the QI. Two other potential indicators, namely dehydration and dyspnea, were excluded since these items are captured in the CHESS scale which was used to identify our sample of seriously ill clients.
Table 2
Quality Indicator operational definitions and mean rate in the seriously ill group
Prevalence of Falls | 49.0 a (6411) | Clients who record a fall on a follow up assessment | Those not completely dependent on bed mobility Risk Adjusters: Parkinson’s disease, ADL impairment, vision impairment |
Prevalence of Disruptive or Intense Daily Pain | 46.6 (6664) | Client is having daily pain -AND- It is severe or excruciating pain | All clients on re-assessment |
Prevalence of Caregiver Distress | 41.7 (5909) | Client’s primary caregiver experiences feelings of distress, anger or depression | All clients on reassessment who have a primary caregiver |
Prevalence of Negative Mood | 26.9 (3847) | Feeling of sadness or bring depressed) -AND- -at least two of: persistent anger, repetitive health complaints, sad, pained, worried facial expressions, recurrent crying, tearfulness, withdrawal from activities, reduced social interaction | All clients on re-assessment |
Prevalence of Inadequate Medication to Control Pain | 22.8 (2875) | Client has pain -AND- Medications do not adequately control pain | All clients on reassessment who experience pain |
Prevalence of Social Isolation | 21.1 (3021) | Client is alone for long periods of time or all of the time - AND - Client indicates feeling lonely -OR- Decline in social activities, client is distressed | All clients on re-assessment |
Prevalence of Constipation | 3.5 (499) | No bowel movement in 3 days | All clients on re-assessment |
The highest overall rates were seen for falls (49.0%), disruptive or intense daily pain (46.6%) and caregiver distress (41.7%). Some of the QIs displayed considerable variation between the regions. For example, when comparing the regions with the highest and lowest rates across the QIs, the largest difference was for caregiver distress (range = 21.5%), followed by falls (range = 16.6%), social isolation (range = 13.7%) and negative mood (range = 12.1%) (Table
3). The falls QI was adjusted for the CPS score (OR = 2.20), ADL-S score (OR = 1.31), the presence of vision impairment (OR = 1.30), and a diagnosis of Parkinson’s disease (OR = 1.85). The adjusted rate for falls is presented in Table
3.
Table 3
Prevalence rates for the seven quality indicators by geographic region
Falls (unadjusted) | 57.1 | 47.6 | 50.3 | 51.1 | 48.7 | 52.3 | 41.7 | 40.5 | 52.4 | 48.3 | 47.8 | 48.1 | 50.3 | 49.6 | 16.6 |
Intense or disruptive Daily Pain | 41.9 | 44.9 | 42.9 | 47.6 | 46 | 49.5 | 48.8 | 47.4 | 45.8 | 49.5 | 45.9 | 47 | 45.8 | 52.1 | 10.2 |
Caregiver Distress | 39.9 | 34.8 | 45.2 | 40.7 | 39.2 | 35.7 | 40 | 39.8 | 46.5 | 37.3 | 47.1 | 44.5 | 44.2 | 56.3 | 21.5 |
Negative Mood | 21.4 | 28.9 | 22.3 | 22.6 | 32.4 | 25.1 | 30.4 | 33.5 | 29.5 | 25.3 | 25.5 | 22 | 27.9 | 27.2 | 12.1 |
Inadequate mediation to control pain | 17.7 | 24.3 | 21.8 | 23.3 | 25.6 | 28.7 | 22.4 | 20.7 | 23.4 | 22.1 | 24.7 | 21.2 | 20.6 | 27.8 | 8.1 |
Social Isolation | 19.2 | 21.8 | 16.2 | 17.7 | 20.6 | 20.8 | 25 | 16.6 | 24.1 | 20.8 | 23.7 | 19.8 | 29.9 | 27 | 13.7 |
Constipation | 4 | 3.9 | 2.5 | 3.4 | 5.4 | 3.1 | 3.7 | 4.8 | 2.8 | 4.1 | 1.7 | 2.9 | 3.5 | 4.3 | 3.7 |
The QI rates were stratified by four diagnoses, namely, cancer, congestive heart failure, chronic obstructive pulmonary disease/asthma/emphysema (a single item on the RAI-HC), and dementia (either Alzheimer’s dementia or any other form of dementia). These groups were not mutually exclusive, therefore an individual with multiple diagnoses could populate multiple groups (Table
4). The largest absolute differences in QI rates were seen between those who had a diagnosis of cancer and those with a diagnosis of dementia. The rate of the caregiver distress QI was higher among those with some form of dementia (52.6% vs. 32.2%), as was the rate of the falls QI (53.3% vs. 40.2%). Conversely, those with cancer were more likely to experience the pain QI than those with dementia (51.6% vs. 39.3%) (Table
4).
Table 4
Quality indicator rates stratified by diagnosis
Prevalence of Falls (unadjusted) | 40.2 (1735) | 50.2 (1708) | 48.2 (1781) | 53.3 (2380) |
Prevalence of Disruptive or Intense Daily Pain | 51.6 (2363) | 52.1 (1904) | 50.6 (1990) | 39.3 (1962) |
Prevalence of Caregiver Distress | 32.2 (1476) | 41.5 (1519) | 41.6 (1636) | 52.6 (2623) |
Prevalence of Negative Mood | 25.9 (1187) | 27.0 (986) | 28.1 (1106) | 23.7 (1185) |
Prevalence of Inadequate Medication to Control Pain | 23.1 (935) | 24.0 (786) | 23.7 (829) | 17.5 (759) |
Prevalence of Social Isolation | 26.4 (1207) | 28.0 (1023) | 29.7 (1167) | 20.3 (1015) |
Prevalence of Constipation | 4.4 (203) | 2.8 (103) | 3.1 (120) | 2.9 (145) |
Discussion
To our knowledge, this is the first paper to develop QIs for seriously ill home care clients using interRAI data. These preliminary QIs have operational definitions, target those with and without cancer, and are based on items within the RAI-HC, the standardized assessment mandated in Ontario and in other parts of Canada. Three of the seven QIs were experienced by over 40% of seriously ill individuals; 42% of caregivers experiencing distress, nearly 50% of clients having falls and 47% with significant pain. All of these QIs represent undesirable outcomes that are amenable to change.
The seven QIs reported here are mainly symptom focused and would be considered outcomes of care, versus measures of the structure or the process of care. Although all three types of indicators are recommended as part of a comprehensive assessment of quality [
46], most QI development efforts have focussed on process indicators [
8,
47] and almost no QIs have been developed explicitly for home-based palliative care [
47], a definite advantage of the current project. The QIs we have developed would fall under two key domains, namely the physical aspects of care (e.g., pain, constipation) and psychosocial aspects of care (e.g., social isolation, caregiver distress). These domains have been highlighted by multiple groups as being instrumental when attempting to assess the quality of palliative care [
2,
8,
48].
Several QI rates in the current study were similar to previous research examining palliative care in the community. For example, this study found a rate of daily pain that was only slightly lower than that reported by Potter et al. (56% vs. 46%) and the rate of negative mood was nearly identical [
49]. The prevalence of constipation was significantly higher in the previous study (35% vs. 3.5%) [
49], which likely reflects the fact that 95% of their sample had cancer and would have a higher rate of opioid use to treat pain. This may relate to the coding of the item on the RAI-HC, which captures instances of constipation only within the last 3 days. Similarly, caregiver distress was lower in previous research (24% vs. 41% in this study) that targeted palliative home care clients, the vast majority of whom had cancer [
50]. One possible explanation is that caregivers of those with other life-limiting illnesses are experiencing high rates of distress. For example, substantial evidence points to caregivers of individuals with dementia experiencing poorer self-rated health, having a greater risk of health problems and elevated levels of stress hormones compared with other caregivers [
51]. This finding is supported by our results showing that caregivers of patients with dementia were more likely to experience distress than those caring for someone with cancer (42% vs. 32%).
Although some quality measures exist for several key outcomes (e.g., pain, caregiver distress, and depression) [
52], there is a serious lack of specific information targeting patients receiving palliative care in their own homes, especially for QIs related to social isolation and falls. Although targeting a somewhat different population, a recent hospital-based study of palliative patients reported rates of social isolation ranging from 23 to 38%, depending on the diagnosis [
53], which is in line with our findings. The rate of falling among a general population of home care clients was 34% [
39], somewhat lower than that reported in this study (49%), which likely reflects the fact that our seriously ill sample were more physically and cognitively impaired.
The seriously ill group was significantly more impaired than the comparison group on the health index scales and were more likely to have been diagnosed with life-limiting illnesses. This group also experienced higher rates (absolute differences between 3 and 15%) of inadequate pain control, daily pain, falls, social isolation, and negative mood when compared to a general home care population aged 65+ in Ontario [
39]. The results reported here support the methodology chosen to identify a group who were seriously ill and could potentially benefit from a palliative approach to care. This choice of target population is supported by other research showing that identifying the need for palliative care is essential for those with less predictable or non-cancer diagnoses [
5]. To effectively identify the need for palliative care, it is critical to look at factors beyond prognosis, as recommended by organizations such as the Canadian Hospice Palliative Care Association, the World Health Organization and the International Association for Hospice and Palliative care [
54‐
56].
This study was limited to using the items available within the RAI-HC and, as a result, some of the suggestions from the expert panel could not be accommodated and therefore we could not develop all of the QIs suggested. The proposed QIs focus mainly on the outcomes of care, partly because those were the suggestions made by the experts, and also since outcomes are more easily measured with the RAI-HC. The experts had very few recommendations for QIs related to the process or structure of care, limiting our capacity to make causal links between these various aspects of care [
57]. Another limitation is the fact that consultations did not include other key stakeholders such as policy-makers, clients, and their families. This will be important to address in future projects to ensure that the QIs fully capture the salient issues from multiple groups. Finally, we were unable to determine whether these clients were receiving palliative home care services. As such, our results apply only to seriously ill clients and the results may be different had we limited our sample to individuals on a palliative caseload and known to be receiving palliative care services.
In Ontario, several initiatives are underway to improve the quality of palliative care services across the province. For example, Health Quality Ontario and the Ontario Palliative Care Network are developing quality standards and indicators for palliative services [
58,
59]. The preliminary list of QIs proposed here can make a significant contribution to this process as these organizations work collaboratively with home care providers and researchers to establish a set of standardized measures. The potential QIs, based on the RAI-HC, can serve as decision-support tools during the process of continuous quality improvement, while organizations attempt to understand the current quality issues they face and how interventions can influence the QI rates over time.