Review Article
At the intersection of chronic disease, disability and health services research: A scoping literature review

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Abstract

Background

There is a concerted effort underway to evaluate and reform our nation's approach to the health of people with ongoing or elevated needs for care, particularly persons with chronic conditions and/or disabilities.

Objective

This literature review characterizes the current state of knowledge on the measurement of chronic disease and disability in population-based health services research on working age adults (age 18–64).

Methods

Scoping review methods were used to scan the health services research literature published since the year 2000, including medline, psycINFO and manual searches. The guiding question was: “How are chronic conditions and disability defined and measured in studies of healthcare access, quality, utilization or cost?”

Results

Fifty-five studies met the stated inclusion criteria. Chronic conditions were variously defined by brief lists of conditions, broader criteria-based lists, two or more (multiple) chronic conditions, or other constructs. Disability was generally assessed through ADLs/IADLs, functional limitations, activity limitations or program eligibility. A smaller subset of studies used information from both domains to identify a study population or to stratify it by subgroup.

Conclusions

There remains a divide in this literature between studies that rely upon diagnostically-oriented measures and studies that instead rely on functional, activity or other constructs of disability to identify the population of interest. This leads to wide ranging differences in population prevalence and outcome estimates. However, there is also a growing effort to develop methods that account for the overlap between chronic disease and disability and to “segment” this heterogeneous population into policy or practice relevant subgroups.

Section snippets

Methods

We employed scoping literature review methods in this study.17 Scoping reviews are most appropriate for broad research questions that seek to map and categorize the main domains and types of knowledge available in a given topical area. We followed the tenets of proper scoping review closely, which include: 1) replicability; 2) explicit inclusion and exclusion criteria; 3) breadth of search strategies; 4) standardized approach to content extraction; 5) iterative analysis and charting of major

Results

In all, 55 publications met the inclusion/exclusion criteria. Of these, 25 were quantitatively oriented studies in which large datasets were analyzed to estimate access to care, service use, quality of care or costs for persons with chronic health conditions, disabilities, or both. Another 14 publications directly addressed measurement issues in health survey or administrative contexts; the majority of these also included quantitative assessments of existing measures or data on persons with

Discussion

Since completion of this review, attention to the high need/high cost population has only accelerated,4,11,14,61, 62, 63, 64 but there remains little consensus over how best to conceptualize and identify these individuals. In a recent literature review on models of care for “people with complex needs”, Henkel, Hendricks & Church (2015)13 described the many disparate and overlapping population groups that potentially have such needs. These include not only persons with frequent ED visits,

Conclusion

Despite growing concern over the health and healthcare access, use and costs of working age adults with ongoing and elevated needs for services and supports, there is at present no uniform definition of this population in the health services research literature or means by which to identify them. The available measures are fragmentary and overlapping, leading to estimates that vary widely with the purposes for which they are selected. However, the Call for Public Health from the IOM marked what

Conflicts

The authors have no funding or other conflicts of interest.

Fundings

This research was supported by the NIH Intramural Research Program. The views expressed in this article are those of the authors and do not necessarily reflect the official policy or position of the National Institutes of Health, the United States government or the other institutions with which the authors are affiliated. The authors gratefully acknowledge the contributions of the other members of the ACHCN expert panel, including: Barbara Altman, Ph.D. (Disability statistics consultant,

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