Background
In Canada, home-care expenditures represent less than 5% of total health-care spending [
1]. Based on data from the 2003 Canadian Community Health Survey (CCHS), Carrière [
2] revealed that 33% to 67% of seniors with activities of daily living (ADL) or instrumental activities of daily living (IADL) needs did not receive any form of home care in preceding year. Using the same data, Busque [
3] reported that, among elderly who needed assistance, 17.7% had at least one unmet need. A prevalence of 9% for ADL/IADL needs was found by Forbes et al. [
4] in a subsample of Canadians diagnosed with dementia. An unmet need is generally defined as a person needing help but reporting not receiving any or enough help [
3,
5]. Basic ADLs comprise everyday living tasks and are commonly represented by the Katz's index, which includes feeding, bathing, dressing, toileting, continence, and transferring [
6]. IADL refers to the periodic routine activities and usually cover the eight activities described by Lawton and Brody: meal preparation, shopping, housekeeping, laundering, using the phone, managing medications, managing money, and using transportation [
7]. Activities like walking inside or outside are also considered in some scales. In a study conducted in the province of Quebec, Canada, Lèvesque et al. [
8] reported an overall prevalence of perceived unmet ADL/IADL needs of 26% in a sample of people aged 75 years or over. These results are consistent with those obtained in other countries where many community-dwelling older persons live without the ADL/IADL assistance they need. Unmet needs could be reported for any ADL or IADL, and the prevalence of
at least one unmet ADL or IADL need has been estimated at between one-fifth and one-half [
9‐
22], depending on the sample characteristics, the definition of unmet needs, and which ADL/IADL are considered.
A number of studies have found that rates of unmet needs increased as the number of ADL/IADL limitations increased [
9,
10,
14,
16,
17,
21]. The number of chronic health conditions, gender, ethnicity, marital status or living alone, family income, and limited insurance coverage were also associated with an increased likelihood of unmet needs [
16‐
18,
21‐
23]. Unmet needs related to ADLs and IADLs are not without consequences for frail elders and the health-care system. For example, unmet ADL needs were associated with many negative health-related events such as having pressure ulcers and contractures, losing weight, falling, incontinence, depression, and death [
9‐
11,
13,
14,
24]. As for the health-care system, unmet ADL needs were also associated with increases in the number of physician visits, emergency-department visits, nursing-home placement, and hospitalizations [
9,
11,
14,
19]. Thus, these negatives consequences may inhibit benefits that we can expect from the home-care sector [
25].
During the last decade in Canada, while the average health spending increased by an average of 2.2% annually, home-care delivery grew by at an annual rate of about 9% [
26]. So far, this increased investment does not seem to have improved the situation with regards to needs of disabled older persons living in the community. Home-care programs provide a wide range of care and services (medical to social), which involve numerous care providers and partners. Because of the way in which the services are organized, fragmentation of care is often identified as a recurrent problem that might result from this situation [
27]. To resolve fragmentation problems, many projects for integrated-service-delivery (ISD) networks were implemented in the last decade. Although these projects vary according to eligibility criteria, types of integration (linkage, coordination, or full integration), and financing mechanisms, they have highlighted many positive impacts such as improvement in elder satisfaction [
28‐
31], improvement in elder empowerment [
30], reduction of caregiver burden [
32], decrease in functional decline [
30,
32,
33], reduction in hospital use [
28‐
30,
33,
34], reduction in emergency-department visits [
30], reduction in nursing home utilization [
28,
29,
32‐
34], and reduction in costs [
29].
Surprisingly, even though all these programs aimed at reducing the fragmentation of care, consolidating the range of services, and promoting a better match of resources to the older person's needs, only the Wisconsin Partnership Program (WPP) (a variation of the PACE Program), [
12], has investigated unmet needs for ADL/IADL disabilities as a main outcome of an ISD network, but failed to achieve an impact. The use of a cross-sectional design, short exposure time (just over a year), and inadequate physician participation could explain the lack of differences. Two other studies addressed unmet needs, although it was not their primary interest. Sands et al. [
19] showed an interesting decline in the use of acute care after six weeks of receiving PACE services for those experiencing ADL unmet needs before enrolment. Yet this study was limited to five ADLs, did not use a comparison group, and retrieved information from the participants' medical records. In another study conducted with 800 members of four Social HMOs, Leutz and Capitman [
35] found that, among those who wanted help from SHMOs, many did not get any or enough help in all eleven areas, especially for nonmedical transportation (58%), managing money (51%), feeling lonely (60%), and emotional support (62%).
Our study aimed at increasing our understanding of the role of integrated models of services in meeting the home-care needs of disabled older persons. This paper uses data from the Program of Research to Integrate Services for the Maintenance of Autonomy (PRISMA) study, conducted between 2001 and 2006 [
30]. It first reports the impact of the PRISMA Model-an integrated-service-delivery (ISD) network-on unmet needs among older adults living in the community. Second, it identifies the correlates of initial status and change in unmet needs. Lastly, it examines the prevalence of unmet needs separately for 29 activities at the end of the study. The PRISMA Model provides data from the ISD network most recently implemented in Canada. Different from fully integrated models, which work in parallel with their usual health systems, the PRISMA Model is a coordination-type model of integration in which the ISD network was embedded within the health- and social-care system using all the public, private, and voluntary health- and-social-services organizations involved in caring for older people in a given area [
30]. The mechanisms and tools developed and implemented by PRISMA are: 1) coordination between decision-makers and managers at the regional and local levels, 2) use of a single entry point, 3) a case-management process, 4) individualized service plans, 5) a single assessment instrument coupled with a management system based on client disabilities, and 6) a computerized clinical chart allowing communication between institutions and clinicians for client monitoring purposes [
30,
36].
It should be noted that, in the province of Quebec, Canada, health- and social-services centers (HSSCs) are responsible for delivering home-care services at the local level. In 2005, HSSCs were created out of the merger of local community services centers, residential and long-term-care centers, and, in most cases, a hospital [
37]. After an individual clinical assessment of a person's biopsychosocial needs has been performed, care and services are provided by health professionals, including physicians, nurses, social workers, physiotherapists, occupational therapists, nutritionists, and homemakers. In addition, given available resources, HSSCs provide, in collaboration with their partners (community groups, the social-economy sector, the private sector), a wide range of care and services, including personal and domestic assistance, specialized care and services, civic-support services, accompaniment on outings, friendly visits, and respite [
38].
Discussion
The primary goal of this study was to examine the impact of an innovative model of an ISD network on unmet needs among the elderly living in the community. Using a population-based approach, data from a 3-year follow-up of a randomly selected stratified sample of community-dwelling older persons at risk of functional decline with a longitudinal quasi-experimental design, we found that living in experimental area identified for implementation of an ISD network was associated with initially more unmet needs, but also with a steeper decrease over time.
These findings are probably attributable to a complex relationship between numerous factors. The growth-curve model with AREA only revealed that this factor accounted for 65% of the variation in rates of change in unmet needs. Given that eligibility criteria for home care became more clearly defined over time in the ISD area, frail and disabled elders were perhaps targeted there more rapidly. Furthermore, the significant effect of the PRISMA Model [
30] on reducing the prevalence and incidence of functional decline in the experimental group over the last two years might explain part of these results, since the level of disability was consistently reported to be related to unmet needs [
9,
10,
17,
21]. In the ISD area, the participants' mean level of empowerment was also higher than in the control area [
30]. Consequently, participants in the ISD area were probably more likely to express their needs, to take an active role in obtaining useful information or services, to initiate relevant steps to their health-care situation, or to manage the challenges of their daily life at home. Another impact of the PRISMA Model was that participant satisfaction improved in the ISD area, yet remained unchanged in the control area [
30]. Greater satisfaction with services may reflect health care and social services that were better delivered and organized, and could have contributed to reducing unmet needs. Many characteristics of the PRISMA Model, such as the "single entry point," that is, a mechanism for accessing services, the individualized service plan or the model of coordination achieved between public, private, and community services might also have influenced these results. Some interventions such as providing information about available services and how to access them may have supported participants in finding help to better fulfill their needs. In fact, it is difficult to focus on one aspect separately as all six elements of the model interact together. They were also well implemented and all considered important, although improvements are needed to make the individualised service plan more useful and effective in supporting the case manager's work [
36,
55].
Without more information, it is difficult to point to other factors that might account for the differences in the level of unmet needs between areas. Although we measured many variables related to elder characteristics and some factors linked to the health-care system, the final growth model explained 25% of the variance in unmet needs. This suggests that a broader range of factors needs to be considered. Since we did not address the reasons for unmet needs, we do not know if, or to what extent, professional oversight, service insufficiencies or inaccessibility, other system failure, or personal preferences played a role in unmet needs. In their study of people with dementia, Forbes et al. [
4] observed that availability, cost and knowledge of service, and the decision not to seek care were reasons for not receiving care. Nevertheless, potential selection bias was limited, and comparability between areas was enhanced since participants were chosen randomly from the older population, and selection of the control area was based on similarities with the experimental area in terms of demographic, economic, and health-services aspects according a systematic method [
30].
The second objective was to identify the correlates of initial status and change in unmet needs. We found that older persons living in the area where the ISD network was expected to be implemented or having higher level of disabilities experienced a steeper decline of their unmet needs over time. Besides the area, being a woman, living alone, having a higher level of disability, greater cognitive impairments, and a lower level of empowerment were linked to initial unmet needs. Identifying related factors and those that could contribute to a greater decrease in unmet needs may provide new perspectives on how to organize home-care services, and, in turn, improve daily life among older persons with disabilities. Factors such as, age, level of education, self-perceived health status, time of care and services received, and type of setting were not significant predictors of either initial status or change in unmet needs. With respect to these variables, some discrepancies were found in previous studies [
3,
17,
18,
21,
56].
As for other factors identified as correlates in this study, the finding that individuals living alone had more unmet needs is consistent with an extensive body of the literature in the field [
10,
16‐
18,
21,
22]. As reported in two Canadian studies [
4,
8], being a woman was associated with having more unmet needs. In other studies, various gender-related effects were observed. It must be recognized that, after age 75, women are more likely to be widowed, while older men are more likely to be married and have a spouse who can assist them in the event of disability. Having more cognitive impairments was related to an increase in unmet needs. It seems consistent with the fact that such elders require more care and services than others with a high level of cognitive functioning. It is, however, difficult to make comparisons with others studies, given the differences in methods. First, since many previous studies relied on self-reporting, older persons with cognitive impairment were often excluded [
5]. Some studies included people with dementia and used a proxy as respondent. Having a proxy was associated with a reduced likelihood of unmet needs [
10,
17]. In our study, like in another Canadian study, the presence of a proxy didn't seem sufficient to fulfill all needs for women with dementia [
4]. In the other study, although women with dementia reported receiving more services, they also indicated greater unmet home-care needs than men. In fact, we are aware of few studies that have addressed level of cognitive functioning as a predictor of unmet needs. In one study, cognitive function was not associated with unmet needs [
18], while van der Roest et al. [
57] found that the caregivers of people with severe dementia reported fewer unmet needs for self-care than caregivers of people with mild to moderate dementia. Finally, earlier studies never addressed level of empowerment. It makes sense, however, that a lower level of empowerment can be a marker of social disengagement when the ability of older persons to mobilize needed resources is limited.
The last objective of this paper was to assess the prevalence of unmet needs at the end of the study. Overall, irrespective of area, we found a high prevalence of unmet needs. In the ISD area, unmet needs decreased, dropping from 68% to 35% over time. In the control area, the percentage of participants with unmet need was never lower than 56% and reached 67% at the end of the study. These values, however, are fairly equivalent to estimates reported in recent studies with similar populations [
13,
35]. Not surprisingly, considering the study population, all five domains covered by the SMAF were compromised. Like numerous studies, we found many unmet needs in the ADL and mobility domains. Inadequate public or private services may make it harder for informal caregivers to satisfy all needs, especially for the more intimate daily activities such as bathing, grooming, toileting, and continence. We also observed several unmet needs in communication functions. At the end of the study, our percentages were, respectively, 11% and 45% for those in the ISD area and those in the control area. It should be mentioned that these activities require constant help throughout the day that even close relatives cannot always provide for. The higher level of unmet needs in the control area may reflect some accessibility problems with medical or rehabilitation services in an area that did not have a coordinated model of services. Moreover, a study investigating the capacity of providers to offer accessible health care for people with disabilities revealed that people with communication limitations or visual impairment were the most difficult to serve [
58]. Until now, only one study has investigated unmet needs related to communication functions in a community-dwelling sample of people with dementia, revealing 9% of unmet needs [
57]. Lastly, our study found fewer unmet needs than what was reported in prior studies about IADLs, specifically those that could be performed weekly or monthly, such as cleaning the house. These activities are possibly easier to fulfill than more frequent activities such as preparing meals or taking medication.
It is difficult to compare estimates across studies because of differences in study purpose and methods, such as sample characteristics, definitions of disability and unmet needs, type of activity considered, and data-collection approach (e.g. expert evaluation or self-reports). Our relatively high rates of unmet needs, however, may be explained by many factors. First, participants recruited in this study were identified at risk of functional decline, and people with cognitive impairments were not excluded. Second, the SMAF covers a broader spectrum of activities than traditional ADL/IADL domains and includes communication, mobility and mental functions, thereby increasing the possibility of finding unmet needs. Third, we defined unmet needs as both the absence of and the insufficiency of assistance with functional needs. Lastly, unmet needs were assessed by expert clinicians and not self-rated. As underlined by Sands et al [
19], in this way, an unmet need is considered a normative need, and estimates are different from what can be found in other studies in which unmet needs were often determined through participant self-reporting [
9,
10,
14,
16,
17,
21]. For example, Morrow-Howell, Proctor & Rozario [
59] highlighted the fact that older persons rate their care as more sufficient than professionals do. This situation was also observed with elderly with cognitive problems for whom caregivers were unwilling to report unmet needs, fearing that doing so would negatively reflect on their own caregiving adequacy [
10]. Thus, professionals assess needs and unmet needs differently than individuals, but we don't know if either is necessarily better than the other, since they have their own different perspectives. Nevertheless, this factor and all the others taken together may explain why our estimates of unmet needs were higher than estimates from previous studies.
While we attempted to conduct a thorough analysis of the available data, our study was also subject to some limitations. The vast majority of participants were Canadian-born and French-speaking, and this lack of ethnic heterogeneity limits the generalizability of our findings. Many studies [
16,
17,
21,
23] have related minority membership to unmet needs. Neither did we investigate economic status, which could be another limitation. Evidence also exists that unmet needs may be associated with the economic status of patients [
9,
10]. Although Canada has a universal publicly funded health-care system, a study conducted in the province of Quebec using standardized assessments and data from administrative databases revealed that home-care users received only 8% of required services from the public sector [
60]. In our study, the rate of services supplied by the public sector was also very low. As supported by Komisar, Feder and Kasper [
13], older adults in lower-income households may not be able to supplement publicly funded services with privately funded ones in the face of inadequate informal help.
In counterpart, many of this study's strengths bolster our confidence in these findings. They include the use of a representative community-based sample, a longitudinal design in which participants were interviewed annually by trained research interviewers with face-to-face assessments and well validated instruments. In the province of Quebec, the SMAF has been included since 2001 in the Multiclientele Assessment Tool, which has been approved by the government for use in all long-term-care facilities, including home health-care agencies [
61]. As the SMAF evaluates the functional ability according to many sources of information, clinical observations have offered additional insight into whether care needs were met during the course of this study. Another advantage of the SMAF is the possibility of simultaneously identifying needs that are met or unmet. Both indicators are useful for the planning and organization of services. Needs assessment examine the type and amount of required services, while assessment of unmet needs highlights problems that are not being addressed by home-care services and their partners. At the clinical level, this information facilitates prioritization of services to meet these needs. For management purposes, such information about unmet needs is useful for monitoring the responsiveness of the service-delivery system. Over the years, many services now provided in Quebec home-care programs became entrenched without having to demonstrate their efficacy in responding to needs related to disabilities.
Loss to follow-up is usually a threat to longitudinal data analysis, since it leads to reduction in sample sizes and to biases. The use of growth modeling, however, enabled us to use all available data for participants lost to death or institutionalization, those with missing data at one or more time points, and to consider data from participants added in 2003. The longitudinal approach has allowed us to observe the dynamics of unmet needs in older persons. Capturing these changes revealed that unmet needs were not necessarily temporary. In specific contexts, some unmet needs are perhaps inevitable, but the high level of unmet needs and the fact that they were not transitory raise some policy issues. ISD networks such as the PRISMA Model, however, seem to be effective in reducing unmet needs, and a study realized in the United States revealed that although unmet needs were substantial in the 6 states surveyed, the broader the access to publicly supported care in a state, the lower the incidence of unmet needs [
13].
Competing interests
The authors declare that they have no competing interests.
Authors' contributions
Author ND contributed to the study's conception and design, conducted the literature review, oversaw the statistical analyses, interpreted the data, and had primary responsibility in drafting the manuscript. MFD contributed to the study's conception and design, participated in drafting the manuscript, and made substantial contributions to the supervision of the statistical analyses and data interpretation. MR coordinated the practical training of interviewers and data collection, and helped with interpret the data. NRG performed the statistical analyses and helped interpret the data. RH conceived, directed, and supervised all steps of the original study and helped interpret the data. All authors critically revised the manuscript, and read and approved the final manuscript.