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Lupus Literature

A LITERATURE REVIEW IN SUPPORT OF

A NATIONAL PUBLIC HEALTH AGENDA FOR LUPUS

BACKGROUND

In 2014, as work at lupus registries funded by the Centers for Disease Control and Prevention (CDC) was nearing an end, CDC recognized a need to provide the larger public health community with a roadmap for the next generation of lupus activities. Previous work in lupus had been focused on biomedical and clinical research. Very little work had been focused on the public health perspective of lupus, such as improved community-clinical linkages, environmental/policy changes, evidence-based approaches to self–management, or risk reduction factors for specific populations.  

NACDD worked closely with the Lupus Foundation of America (LFA) and CDC to develop the 2015 A National Public Health Agenda for Lupus (link), which provides a broad public health approach to lupus diagnosis, disease management, treatment and research, and serves as an overall blueprint for action in lupus to help guide future policy, planning, advocacy and action initiatives.The six priorities, 15 strategies and 63 recommendations set forth in the Agenda are intended to complement efforts in lupus biomedical research and clinical care.

LITERATURE REVIEW

This supplement to A National Public Health Agenda for Lupusdescribes a systematic review of the public health literature on lupus, which was not fully available at the time the Agenda was being created.  It is offered now as a starting point for those interested in pursuing some of the recommendations of the Agenda.

NACDD contracted with SciMetrika to conduct a systematic review of the public health literature on lupus that might be relevant to addressing lupus from a public health perspective. 

Exclusion criteria

We excluded articleson lupus that addressed only biomarkers, language validation of a survey (not English validation), and clinical diagnosis, were published before 1990, orwere editorials on another article (the articles discussed in the editorials, if relevant, were added to the review).

Inclusion criteria.  We sought retrievable, peer reviewed articles from 1990 through 2015that addressedlupus and one or more of the following seven topic areas:

              1. Burden

o   Quality of life (QoL), Health related Quality of life (HrQOl), Lupus Quality of Life (LQoL)

o   Health care utilization (e.g., hospitalizations, ambulatory care visits, emergency department visits, etc.)

o   Economic costs, economic burden, costs, health economics

o   Employment/Occupation, productivity, disability, work outcomes.

o   Tools/instruments to assess burden

2.     Population incidence overall and by

o   Age

o   Gender

o   Race/ethnicity

3.     Population prevalence overall and by

a.     Age

b.     Gender

c.     Race/ethnicity

4.     Comorbidities

a.     arthritis, cardiovascular disease, depression, diabetes, obesity

5.     Disparities

a.     Health insurance

b.     Race/ethnicity

c.     Income

d.     Access to care

e.     Treatment

6.     Access to care

a.     Supply of rheumatologists

b.     Distribution of rheumatologists

c.     Primary care health professional shortage areas

7.     Public health

a.     Prevention

b.     Risk factors

Burden, incidence, prevalence, and access to care were limited to US studies, while race/ethnicity, comorbidity, disparities, and public health were not limited by country.

Overall Methodology

Search terms were defined and search syntaxes developed for each topic area to find articles of potential interest. Syntaxes were tailored for each database searched (PubMed, EMBASE, PsycINFO, and the Cochrane Library).

SciMetrika identified 2,038 articles of potential interest.  After eliminating duplicate articles, 1,541 were reviewed using a two-phase approach to determine relevancy of the articles for each topic area.

Phase I reviewed titles and abstracts of the resulting articlesfor potential relevancy, and added articles to additional topic areas if the article was deemed potentially relevant.

Phase II was a full text review of articles determined to be potentially relevant during Phase I.Additional articles suggested by lupus and public health experts or identified during the review of full text were also reviewed in Phase II.

The relevant information from the articles determined to be definitely relevant during Phase II wasentered into an Excel spreadsheet during Abstraction. This spreadsheet includedcitation information, topic/domain area(s), target population, sample size and characteristics, study objective, methodology, results, and conclusions and recommendations.

Figure 1: Literature Review Process


Findings

The 253 articles found to be definitely relevant included 223 original research studies, 18 reviews, 49commentaries/nonsystematic reviews, and one symposium summary. The 253 articles contributed 292 citations for the seven required topic areasbecause some articles were relevant to more than one topic area.

Table 2: Number of citations for 253 articles, by topic area

Topic Area

Number of citations for 253 articles

Original Research (197 articles)

Review (15 articles)

Commentaries/Nonsystematic Review (40 articles)

Symposium Summary (1 article)

Burden

106

84

9

13

 

Incidence

11

7

1

3

 

Prevalence

8

4

1

3

 

Comorbidity

72

59

3

10

 

Disparities

51

39

2

9

1

Access to Care

12

11

0

1

 

Public Health

32

19

2

10

 

Total

292

223

18

49

1

 

 A National Public Health Agenda for Lupus

The Agenda is also organized and framed by the CDC’s Four Domains of Chronic Disease Prevention, with strategies and recommendations specific to each domain.

1. Epidemiology and Surveillance to provide data to define and prioritize public health problems.

  1. Environmental Approaches to promote health and support healthy behaviors.
  2. Health Care System Interventions to improve the delivery and use of clinical and other preventive services.
  3. Community Programs Linked to Clinical Services to ensure access to preventive and self-management resources.

To better relate the seven topic areas to the four domains, each topic area was assigned to a domain (Table 3). 

Table 3: Assignment of Seven Topic Areas to Four CDC Domains

Topic

Epidemiology and Surveillance

Environmental Approaches

Health Care System Interventions

Community Programs Linked to Clinical Services

Burden

X

 

 

 

Prevalence

X

 

 

 

Comorbidity

 

 

X

 

Disparities

 

 

X

X

Access to Care

 

 

X

X

Public Health

 

X

 

 


Next Steps

This literature review is intended to complement the A National Public Health Agenda for Lupus, and serve as a starting point for new and expanded areas of public health surveillance, research and program development.  

Contributors to this report:

  • Leslie Best, BSW, National Association of Chronic Disease Director
  • Charles Helmick, MD, Centers for Disease Control and Prevention
  • Rachel Williams, MPH, SciMetrika LLC

This publication (downloadable below) was supported by CDC Arthritis Program through Cooperative Agreement Number 5U389OT00025-02 of the CDC Office for State, Tribal, Local and Territorial Support.  Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.

The following are additional articles of interest.

SLE - Georgia Lupus Registry - 2014

SLE - The Michigan Lupus Epidemiology and Surveillance Program - 2014

Distribution of US Adult Rheumatologists: Implications for training and workforce

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