In this study we assessed agreement between population-based administrative and survey data for ascertaining cases of diabetes, asthma, chronic obstructive pulmonary disease, cardiovascular diseases (including hypertension), Parkinson’s disease, thyroid disorders and epilepsy, for which BHIS data served as the gold standard. We also investigated the individual characteristics that could influence the agreement between both data sources.
Using the two data sources, we obtained inconsistent prevalence estimates in 3 out of the 7 CDs studied. Specifically, in CVDs (including hypertension), the prevalence was significantly higher in the BCHI data than in the BHIS data, while the inverse was true for COPD and asthma. The high prevalence of CVDs (including hypertension) according to the BCHI source (25%) compared to the BHIS prevalence (19%) could be explained by the use of drugs in this ATC group for other problems such as a high serum cholesterol for example. Some drugs may be assigned to two chronic diseases simultaneously, for example, beta-blockers are prescribed both for patients with hypertension and in patients with heart problems. As mentioned by Huber et al. in their study, an unique assignment of ATC-codes to heart diseases is challenging, and with the new trends in the use of various drugs for cardiac and hypertensive patients, a clear distinction between ATC-codes for cardiac diseases and hypertension is infeasible [9]. Therefore, we included hypertension in the BHIS based case definition of CVDs. The low prevalence of COPD and asthma in the administrative data could be explained by the fact that some people suffering from asthma or COPD do not necessarily take medications or less than 90 DDDs per year.
The estimated prevalence rate of diabetes mellitus from BCHI data is comparable to the one estimated in similar studies using health administrative database [9, 10, 22, 23], but higher than those in others comparable studies [5, 13]. Moreover, the prevalence of the respiratory illness (COPD, asthma) from BCHI is also comparable to those in similar in Netherlands, Italy and Swedish [5, 13, 24, 25]. Regarding the prevalence of Parkinson disease, thyroid disorders and Epilepsy, our results are in line with those reported by Francesco Chini et al. in Italy using a prescribed database [13] and by Huber et al. in Switzerland using medical and pharmacy claims data [9]. Considering the CVDs (including hypertension), our estimated prevalence was lower than the prevalence obtained by Huber et al. (29%) based on pharmacy data [9]. This difference could be explained by the CDs case definition used in their study: people were considered as having CD if they have at least one prescription in one of the generated ATC-groups CDs at the end of the reference year, while our definition was more selective (at least 90 DDDs per year which could correspond to several prescriptions (if small package) or more or less 3 months treatment per the given year.
We found that sensitivity of administrative CDs was good-to-fair for diabetes and CVDs and poor for the remaining CDs. Not surprisingly, the lowest sensitivity was for COPD and asthma. The sensitivity drop with the increase of the cut-off point of DDD, while the PPV increase.
CDs that are more prevalent or that are symptom-based may also be more reliably self-reported [26]. In our definition of CVDs in BHIS data source, we included hypertension, which may have contributed to increase the agreement between both data sources for CVDs.
The lower sensitivity of asthma (27.4%) in contrast with its relatively higher PPV (72.9%) in this study could be explained by the fact that most of the people suffering from a less severe case of asthma could not take up to 90 DDDs of the specific medication per year and those who reach that cut-off are certainly positive cases. Furthermore, in an exploratory analysis (results not shown), we found that 3 persons out of 10 suffering from this CD did not contact a health care professional in the past 12 months for that condition.
The agreement between the two data sources varies by participants’ sociodemographic characteristics and health status. However, this moderating effect varies in magnitude across CDs. Our results are consistent with findings in previous studies [3, 8, 27]. For instance, Lix et al. found that agreement between self-reported and medical records of chronic conditions was higher among younger age-groups and in the absence of comorbidity [3].
This study presents a number of strengths that deserve to be highlighted. First, the large sample size and the use of comprehensive administrative data, covering 99% of the Belgian population. Second, we calculated five agreement measures to enable comparison between data sources. Third, using individual record linkage, we further examined predictors that could affect the agreement between both data sources.
A number of limitations should also be acknowledged. One of the main limitations is that the case definition of CDs in the administrative data source was based on prescription drug codes dispensed in public pharmacies only and therefore drugs dispensed in the hospital settings were not included. Another limitation is the lack of additional information such as ICD-10 codes or other clinical diagnostic codes in the case ascertainment from administrative data source. Indeed, validation studies often include information from various sources in the algorithms: health surveys, ICD-10 codes, ATC codes, other clinical diagnostic codes, etc., and this provides much better measures of agreement [2, 3, 7, 10]. Finally, the BHIS data was used as the gold standard in this study because next to administrative data, it is the only source for obtaining population-based chronic disease prevalence estimates in Belgium. We acknowledged that self-reported data may not be an unbiased gold standard due to the risk of under-reporting or over-reporting of some chronic diseases. However, self-reported data have been used in previous studies to assess the validity of health administrative databases [20, 28, 29] and have shown higher agreement between these sources for chronic diseases that are more familiar to patients, well defined and require ongoing management [3, 20, 28, 30, 31]. Keeping this in mind, the CDs discussed in this study are sufficiently well known and defined that the risk of providing erroneous information from BHIS participants is negligible. Moreover, several studies have assessed the specificity of self-reported CDs compared to clinical diagnoses or medical records and have found that the specificity was at least 80% for asthma, hypertension, severe heart disease or heart attack, stroke, diabetes mellitus, epilepsy, and Parkinson's disease [32].