Validation of the Swedevox registry of continuous positive airway pressure, long-term mechanical ventilator and long-term oxygen therapy

Abstract

BackgroundThe Swedish Registry of Respiratory Failure (Swedevox) collects nationwide data on patients starting continuous positive airway pressure (CPAP) treatment, long-term mechanical ventilator (LTMV) and long-term oxygen therapy (LTOT). We validated key information in Swedevox against source data from medical records.MethodsThis was a retrospective validation study of patients starting CPAP (n=175), LTMV (n=177) or LTOT (n=175) across seven centres 2013–2017. Agreement with medical record data was analysed using differences in means (standard deviation) and proportion (%) of a selection of clinically relevant variables. Variables of interest included for CPAP: Apnea Hypopnea Index (AHI), height, weight, body mass index (BMI) and Epworth Sleepiness Scale (ESS) score; for LTMV: date of blood gas, PaCO2 (breathing air), weight and diagnosis group; and for LTOT: blood gases breathing air and oxygen, spirometry and main diagnosis.ResultsData on CPAP and LTOT had very high validity across all evaluated variables (all <5% discrepancy). For LTMV, variability was higher against source information for PaCO2 (>0.5 kPa in 25.9%), weight (>5 kg in 47.5%) and diagnosis group. Inconsistency was higher for patients starting LTMV acutely versus electively (PaCO2 –difference >0.5 kPa in 36% versus 21%, p<0.05, respectively). However, there were no signs of systematic bias (mean differences close to zero) across the evaluated variables.ConclusionValidity of Swedevox data, compared with medical records, was very high for CPAP, LTMV and LTOT. The large sample size and lack of systematic differences support that Swedevox data are valid for health care quality assessment and research.

Socioeconomic Factors and Adherence to CPAP

“…In addition, reported Swedevox registry data have a high degree of internal and external validity, as evidenced by an actual validation study that demonstrated > 98% agreement of register data and source data in the medical records. 35 Cross-linkage of our patient data with high-quality socioeconomic data from the nationwide A number of limitations need to be discussed, including a high proportion of patients lost to follow-up (more than 60%), which may have created an important bias in our analysis. solved first, but automated follow-up reporting definitely would increase data capture and would strengthen overall data quality from the registry.…”

“…In addition, reported Swedevox registry data have a high degree of internal and external validity, as evidenced by an actual validation study that demonstrated > 98% agreement of register data and source data in the medical records. 35 Cross-linkage of our patient data with high-quality socioeconomic data from the nationwide Swedish Civil Registry and Tax Authorities creates a world-unique database in size and data quality.…”

Hypoxemia severity and survival in ILD and COPD on long-term oxygen therapy – The population-based DISCOVERY study

“…Strengths of the present study are the large, nationwide cohort of patients treated with LTOT, with complete follow-up using mandatory national registries and high internal and external validity of LTOT data [4,9]. With an estimated completeness of 85-90% the study is population-based in regard to patients starting LTOT.…”

Indications and patterns of use of benzodiazepines and opioids in severe interstitial lung disease: a population-based longitudinal study

“…The following patient level data were collected from Swedevox at the start of LTOT (baseline) [20]: age, gender, forced expiratory volume in one second (FEV 1 ) % of predicted, vital capacity (VC) % of predicted, FEV 1 /VC, arterial oxygen tension (PaO 2 ) and arterial carbon dioxide tension (PaCO 2 ) while breathing air and oxygen. The data in Swedevox, including the ILD diagnosis, spirometry and blood gases, were recently validated with high concordance with medical records [22]. Data on dispensed drug prescriptions were obtained from the Swedish Prescribed Drug Register, which includes all dispensed prescriptions during outpatient care nationwide.…”