Study
Type of study
Study period
Onset (age)
Incidence per 100,000 persons
Prevalence per 100,000 persons
Country/study population
Lindeberg and Elbrond (1990)
Population-based registry
1968–1984
Juvenile (<20 years)
0.362
–
Denmark/Funen and Jutland
Adult
0.394
–
Bomholt (1988)
Population-based registry
1980–1983
Juvenile (0–14 years)
0.6
0.8
Denmark/Copenhagen
Adult
0.8
2.3
Omland et al. (2012)
Population-based registry
1987–2009
Juvenile (<18 years)
0.17
–
Norway/Oslo and Akershus
Adult
0.54
–
Derkay (1995)
National registry
1993–1994
Juvenile (<14 years)
4.3
–
United States
Adult (>15 years)
1.8
–
Campisi et al. (2010)
National registry
1994–2007
Juvenile (0–14 years)
0.24
1.11
Canada
Armstrong et al. (2000)
Population-based registry
1996
Juvenile (<18 years)
1.11
2.59
United States, Atlanta
0.36
1.69
United States, Seattle
Novakovic et al. (2010)
Administrative claims
1998–2008
Juvenile (<20 years)
–
0.6–1.11
Australia
Marsico et al. (2014)
Administrative claims
2006
Juvenile (<18 years)
–
1.03
United States/publically insured
–
0.51
United States/privately insured
Donne et al. (2016)
Nationally representative health survey
2014–2015
Juvenile and adult
–
1.42
United Kingdom
Studies have been conducted outside the United States as well. A Danish study found that between 1969 and 1984 in the regions of Funen and Jutland, juvenile and adult incidence was similar (0.362 per 100,000 children <20 years of age and 0.394 per 100,000 adults, respectively) (Lindeberg and Elbrond 1990, 1989). An Australian study used administrative claims data from 1998 through 2008 in order to determine the utility of claims codes in identifying true cases and determining JORRP burden nationally. They reported JORRP prevalence of 0.6–1.1 per 100,000 persons <20 years old (Novakovic et al. 2010). A cross-sectional online survey designed to gather aggregate totals of both child and adult RRP patients being treated in 2015 in the United Kingdom (UK) was sent to ear, nose, and throat (ENT) consultants in nearly all of the National Health Service (NHS) trusts and boards of England, Scotland, Wales, and Northern Ireland. This study found a reported 1.42 cases of RRP/100,000 persons among the general population (Donne et al. 2016).
3.2 Types of Monitoring Studies
Several types of public health monitoring are useful for identifying and quantifying areas of need and, ultimately, informing public health action. The particular approach selected is a function of its objective, intended area of response (i.e., policy decisions, resource allocation, program implementation), and the type and frequency of data collected (i.e., health status data, laboratory specimens, self-report information) (Thacker and Berkelman 1988; Nsubuga et al. 2006). For many public health information systems, the patient-clinician interaction serves as the primary source of data. Thus, healthcare provider participation in reporting health conditions is critical for building the evidence necessary to meet public health objectives (Meites et al. 2013). Monitoring trends in genital warts (due to HPV types 6 and 11) and RRP will be useful to guide strategies for reducing its overall burden in the United States. Although neither HPV infection, nor genital warts, nor RRP is a notifiable condition through the National Notifiable Disease Surveillance System (NNDSS), alternative means for estimating the scope of RRP could include other surveillance systems, nationally representative surveys, analyses of data from registries and collaboratives, and administrative claims databases (Centers for Disease Control and Prevention 2016).
3.2.1 Surveillance Systems
National public health surveillance involves the ongoing collection and analysis of data with coordination between local, state, territorial, and national public health partners (Lee and Thacker 2011). Currently, there are no national surveillance systems in the United States which systematically monitor RRP, although such monitoring could be useful for identifying annual disease burden. As previously mentioned, a prominent national surveillance system in the United States is the NNDSS, which uses standardized tools for voluntary electronic case reporting of nationally notifiable diseases and conditions among 57 jurisdictions (Centers for Disease Control and Prevention 2016; Adams et al. 2015). Each year, the Centers for Disease Control and Prevention (CDC) and Council of State and Territorial Epidemiologists (CSTE) revise the annual list of nationally notifiable conditions, which may be infectious or noninfectious. Within each state or jurisdiction, however, the list of mandatory reportable conditions is revised according to applicable state or local law (Thacker and Berkelman 1988; Gostin 2000). For example, although it is not a nationally notifiable condition, RRP is reportable in the state of Florida (Florida Department of Health 2014).
3.2.2 Nationally Representative Health Surveys
Nationally representative health surveys collect individual-level data through self-report from volunteer participants and often are used to support surveillance systems in assessing health status of a population. Currently there are no national surveys which adequately capture RRP diagnoses in the United States. The National Center for Health Statistics (NCHS) at CDC oversees multiple programs which conduct surveys to provide national data on health and disease. Data obtained from these surveys may be used to further study trends associated with specific subpopulations or to evaluate public health programs (Ivankovich et al. 2013; Sirken et al. 2011). One NCHS survey in particular, the National Health and Nutrition Examination Survey (NHANES), gathers a range of demographic and health-related information on adults and children and conducts laboratory testing, including testing for type-specific HPV (Centers for Disease Control and Prevention 2015). However, because national surveys sample broadly to reflect national profiles of health conditions, they are not well suited to detect rare diseases such as RRP (Nsubuga et al. 2006).
3.2.3 Registries and Collaboratives
Health registries target a specific disease or health status, as compared with national health surveys which generally collect a broad range of information from a representative sample of households and individuals (National Institutes of Health 2016). Databases and registries are useful for public health surveillance efforts and particularly important for rare disease detection. In the United States, the RRP Task Force collected pilot data for a national registry by mailing surveys to members of otolaryngology professional societies and a sample of ENTs in clinical practice. This study obtained data on incidence, prevalence, demographics, and course of disease for patients with JORRP (onset age <14 years) or AORRP (onset age >15 years) during 1993–1994 (Derkay 1995). After adjusting for survey response rate, national disease burden and cost projections were calculated using census data.
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