Introduction
In the last decade, chronic diseases such as cancer, heart disease and diabetes have become the leading cause of death worldwide and are associated with 59 % of deaths and 46 % of the global disease burden [
1]. Chronic diseases are characterised by multiple causality, genetic and lifestyle risk factors, long latency periods, and prolonged periods of illness with some level of functional impairment or disability [
2]. Individuals diagnosed with a chronic disease often suffer from reduced quality of life and report poor physical functioning and emotional wellbeing [
3].
Individuals with chronic diseases are frequent users of complex and costly healthcare services [
4]. Chronic disease care usually requires comprehensive and personalised services involving multi-disciplinary teams. This care is often delivered at outpatient clinics, which are defined as services providing diagnostic or therapeutic care not requiring an overnight stay in a medical institution [
5]. Currently, non-emergency outpatient services for chronic diseases account for a large proportion of health expenditures within high-income countries [
6]. In 2011, the Organization for Economic Co-operation and Development (OECD) estimated high income countries allocate, on average, approximately 33 % of their total healthcare budgets to outpatient services [
6]. However, several countries dedicate an even larger proportion to these services including a variety of private and public-based systems.
With the associated high healthcare expenditure and disease burden, effective management of chronic diseases have been targeted in policy and research initiatives. Within high-income countries, emphasis has been placed on improving the efficiency and ability of health systems to respond to chronic disease patients’ evolving healthcare needs in an equitable manner. Several performance indicators relating to chronic care are incorporated into quality frameworks proposed by organizations such as the Institute of Medicine [
7], the Australian National Health Performance Committee [
8], the United Kingdom’s National Institute of Health [
9], and the World Health Organization [
10]. Suggested performance domains focus on equity, effectiveness, safety, responsiveness, continuity of care, efficiency and accessibility. Beyond these domains, patient-centered care is also considered to be essential to high quality healthcare and requires patients’ preferences and values to be considered in healthcare provision [
11].
Accessibility is defined as the ability to receive timely resources to manage personal healthcare needs in order to achieve the best possible outcomes [
12]. Several theoretical frameworks have been proposed in order to differentiate and operationalize the factors that can act as potential barriers to receiving care [
13]. Roy Penchansky and William Thomas suggested a model of fit where access is conceptualized as the degree of fit between patient need and the service’s ability to respond to and meet those needs [
14]. Poor ‘fit’ will result in an access barrier. Five distinct forms of barriers have been proposed and validated within this model (Table
1). Metrics used to describe these potential barriers to service access have included: 1) equitable patterns of service utilization according to demographic, clinical, or health insurance characteristics; 2) having a usual source of care; 3) patient need assessment, for example levels of unmet medical, supportive care, or prescription needs; and 4) patient satisfaction surveys [
12,
15‐
17].
Table 1
Definition of barriers within the model of fit
Availability | The relationship between the volume or type of existing services and patient volume or type of needs. |
Accessibility | The relationship between the location of health services and the location of the patients. |
Accommodation | The relationship between the manner in which the supply resources are organized to accept patients and the patients’ ability to accommodate to these factors. |
Affordability | The relationship between prices of services and the patients’ ability and willingness to pay for these services. |
Acceptability | The relationship between patients’ attitudes to personal and practice characteristics of existing providers and alternatively, provider perceptions of patients’ characteristics. |
There is considerable inequity in access to high quality outpatient services. Health service utilization data has consistently demonstrated an association between patient characteristics and access barriers for individuals with chronic diseases. For example, ethnic minorities within the United States have been found to be significantly less likely to access outpatient services for asthma, hypertension, diabetes mellitus or congestive heart failure as compared to Caucasians [
18]. This trend has also been identified in access to oncology services [
19].
The proportion of unmet needs reported by patients is significantly higher for those with chronic diseases and increases with comorbidities [
20]. Results from the Canadian Community Health Survey and national hospitalisation data report that unmet needs in samples of people with chronic diseases remain disproportionally high even after controlling for socio-demographic characteristics [
20]. Research also suggests individuals with chronic diseases (lasting at least 6 months with restrictions in activities of daily living) were three times more likely to report an unmet need than individuals without a chronic disease [
4]. Overall, health service utilization and need assessment survey data suggest individuals with chronic diseases struggle to access required health services; while these health services struggle to meet patients’ ongoing needs.
Health service planning and policy would benefit from detailed information on the scope of common and unique (i.e., disease-specific) barriers to optimal care. Currently, there is a lack of research comparing the barriers to care experienced across groups with chronic diseases [
21]. While there are some trends in the types of barriers experienced by these groups, there has been no overarching review to distinguish experiences or concerns which are common across chronic disease groups compared to those which are unique to particular groups or diseases. Understanding the unique barriers to care experienced by particular groups may help to guide health service research to develop quality initiatives to target specific accessibility issue; conversely, those barriers that are common across groups should be prioritised and managed on a system-level.
This systematic literature review will examine the common and unique barriers experienced by nine chronic disease groups when accessing specialist outpatient care. For the purposes of this review, the definition of barrier proposed within the model of fit will be used - any factor which impedes or reduces the availability, accessibility, affordability, accommodation or amenability of outpatient care [
14]. Additional factors that influence patient unmet needs, utilization patterns, and satisfaction that are not adequately captured by the model of fit will also be recorded. This includes patient-centered care domains, such as support for self-management or care coordination within multidisciplinary teams, that have recently become corner-stones of healthcare quality initiatives [
11,
22]. The results will be highly applicable to a range of chronic disease health services and will be the preliminary step to understanding how limited access and unmet needs can be appropriately addressed by quality improvement initiatives within specialized outpatient settings.
Objectives
This systematic review of quantitative studies was conducted to describe:
1.
The scope and frequency of barriers reported by chronic disease patients when accessing outpatient specialist services;
2.
The common and unique barriers that are reported across or within chronic diseases.
Beyond providing a quantitative description of the scope, frequency, and commonality of barriers experienced when accessing services, recurrent themes within the reviewed studies were summarized and framed within the context of health service interventions. This synthesis of study results provides a preliminary understanding of those approaches capable of improving the equitable delivery of chronic disease outpatient care within high-income countries.
Review
Methods
A systematic literature review of quantitative studies was conducted according to The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement [
23].
Search strategy
Search terms were generated iteratively by the research team and reviewed by an experienced medical librarian. Search terms used in various combinations included: chronic disease; neoplasm; outpatient or ambulatory services. The following search limits were applied: English language; all adults defined as over the age of eighteen years; and publication date between 2002 and 2014. This year range was applied to capture articles published in response to several seminal articles released in 2001 that proposed accessibility as a quality indicator. This includes the Institute of Medicine’s Crossing the Quality Chasm [
7]. An example of the electronic search strategy is available in the Supplementary Material (Additional file
1).
The search was conducted in: the Cumulative Index to Nursing and Allied Health Literature (CINAHL); Embase; MEDLINE; and PsychINFO. The final search was completed May 2014.
Eligibility criteria
Quantitative or mixed methods studies which report barriers to receiving optimal specialist outpatient care were eligible for review. Six inclusion and eight exclusion criteria were applied to retrieved articles (Table
2). To ensure articles were relevant within high-income countries, only research conducted in 31 high-income Organization for Economic Co-operation and Development (OECD) countries were eligible for review [
24]. A total of nine prevalent chronic diseases were included: Type 2 diabetes, arthritis, osteoporosis, ischaemic heart disease (coronary heart disease), stroke, depression, asthma, non-melanoma cancers, and chronic obstructive pulmonary disorders. These diseases were selected as they have been proposed as health priority areas within Australia [
25], the Pan-Americas [
26], Europe [
27], and are included in major WHO reports relating to chronic diseases [
28].
Table 2
Eligibility criteria for all retrieved articles
1. Quantitative or mixed methods study design | 1. Qualitative study design, editorial letters, opinion articles or teaching documents |
2. Adult patient, health service professionals or support persons are sampled | 2. Paediatric samples (less than 18 years of age) |
3. Study setting is an outpatient specialist service | 3a. Participants are recruited from outpatient settings, but barriers to other care settings are assessed |
3b. Palliative, emergency or in-patient services only |
3c. Non specialist services only (such as primary care practices) |
4. Study must clearly specify one or more of diseases of interest are included in the study sample. | 4. Acute or other chronic diseases not listed as diseases of interest |
5. A barrier to optimal outpatient care is measured | 5. No barrier is measured (eg. treatment efficacy, diagnostic protocol, symptom or disease prevalence) |
6. High income OECD countriesa
| 6. All middle or low income non-OECD countries |
7. Full text articles published in English | 7. Conference proceedings, unavailable full text articles or article not published in English |
Paediatric research was excluded. Research involving childhood cancer survivors was included if the majority (>50 %) of participants were eighteen years of age or older. Several studies explored barriers across specialist, primary care, and inpatient services – these studies were only included if the majority of participants (>50 %) accessed outpatient services or a sub-group analysis was performed. Eligibility criteria were independently pilot tested by two members of the research team with a random sample of titles and abstracts (10 %).
Study selection process
Using the eligibility criteria, a research team member reviewed all titles and abstracts. A random 10 % of these were reviewed by an independent secondary reviewer. A Cohen’s kappa value was recorded to assess inter-rater reliability. Discrepancies between the two reviewers were discussed, and if unresolved, a third reviewer was included to reach consensus. The study selection process was facilitated by Synthesis, a literature review software package [
29].
Data collection process
Study characteristics and data describing the barriers to receiving optimal outpatient care were extracted from full-text articles using a structured electronic form. All eligible full-text articles were coded by one reviewer, with a random 10 % of articles coded by a second independent reviewer. Coded results from the two reviewers were compared to ensure the process was systematic and comprehensive.
Data items
Data items were extracted to address the following study objectives:
Objective 1: To describe the scope and frequency of barriers experienced when accessing specialist outpatient services, the following was recorded: 1) if a barrier relating to one of five domains within the model of fit - availability, accessibility, affordability, accommodation or acceptability (defined in Table
1)- was assessed; 2) the disease(s) of interest; and 3) the service(s) of interest. To describe any additional variables focusing on any barriers to optimal outpatient care that were not adequately captured within the model of fit, patient-centered care domains including information provision, self-management, need assessment, coordination of care, and medical errors were also recorded.
For each of the five domains defined in the model of fit and for additional barriers to optimal care, key terms were used to describe barriers in more detail. Where possible, Medical Subject Headings (MeSH) were chosen. For example, a general affordability barrier could be described as inadequate insurance coverage (MeSH: health insurance) or inability to pay for initial services or ongoing care (MeSH: medical fees).
Objective 2: To describe the common and unique barriers reported by chronic diseases, the number of disease groups reporting the barrier was recorded. A barrier was considered common if reported in relation to three or more diseases. Alternatively, a barrier was considered unique if reported in relation to one or two diseases. This range was selected as the high volume of oncology studies masked potential unique barriers experienced by only one other chronic disease, such as depression.
Finally, in order to frame these results within the context of health service interventions, the research team summarized emerging concepts using a thematic analysis approach [
30]. To determine those concepts which were of most significance and relevance to outpatient service, raw study data were recorded and recurrent themes were summarized by the research team. This is considered as a data-driven thematic approach [
30].
Summary measures
If reported, the proportion or odds ratio of participants indicating a barrier was recorded as raw data. Due to the heterogeneity of study designs and outcome measures, meta-analysis could not be conducted.
Conclusions
Overall, patients with prevalent chronic diseases experience thirty three specific barriers to outpatient care across six accessibility domains. This includes additional patient-centered care dimensions such as self-care, consumer information provision, and need assessment. By focusing on prevalent chronic diseases within outpatient specialist settings, this systematic review describes the scope and frequency of common and unique barriers to care and synthesizes this into a concise list of potential quality improvement initiatives.
Results from this review suggest that in order to design targeted initiatives, it is important characterize barriers in detail and to explore possible barriers in the delivery of patient-centered care. In examining the common barriers, four themes were recurrent across chronic disease groups. First, at initial contact with a health care service, individuals experience delays to first appointment or treatment and causes considerable patient concern. Second, patients report health services are not organized or sufficiently flexible to accommodate scheduling preferences, and the physical structure of the clinic limits accessibility. Third, poor continuity of care and information transfer in the healthcare team was perceived to negatively impact the quality of care received. Fourth, inadequate information provision and a lack of involvement in treatment decisions were reported by multiple chronic disease groups. Given these themes were recurrent across chronic disease groups, system-wide initiatives targeting these gaps in the quality of care are appropriate and should be prioritized. Health services may consider improvements in: appointment scheduling systems; content of and access to medical records across health professionals; and timely provision of personalized information with multiple opportunities to review patient concerns.
In examining the unique barriers experienced by only a few chronic disease groups, need assessment practices and referral processes were seen as sub-optimal by individuals diagnosed with cancer and/or depression. Health services may consider evaluating current screening practices to ensure need assessments are: routinely and systematically conducted; sufficiently flexible to document salient needs that may be outside the scope of physical or emotional concerns, such as psychosocial or spirituality needs; and provide instruction and a process to address a detected need, such as an automatic referral pathway. Results from this study suggest these initiatives may best targeted within oncology or mental health services.
Competing interests
The authors declare that they have no competing interests.
Authors’ contributions
All authors participated in conception of the study design. EF completed all database searches, data extraction and analysis. Both EF and JB completed abstract and title coding, and EF and CP completed full-text coding. All authors participated in reviewing raw data in order to summarize key themes. EF drafted the final manuscript with JB and CP reviewing the content for intellectual contribution and clarity. All authors read and approved the final manuscript.