Comparison of self-report and administrative data sources to capture health care resource use in people with chronic obstructive pulmonary disease following pulmonary rehabilitation

BACKGROUND: The optimal method to collect accurate healthcare utilisation data in people with chronic obstructive pulmonary disease (COPD) is not well established. The aim of this study was to determine feasibility and compare self-report and administrative data sources to capture health care resource use in people with COPD for 12 months following pulmonary rehabilitation. METHODS: This is a secondary analysis of a randomised controlled equivalence trial comparing centre-based and home-based pulmonary rehabilitation. Healthcare utilisation data were collected for 12 months following pulmonary rehabilitation from self-report (monthly telephone questionnaires and diaries) and administrative sources (Medicare Benefits Schedule, medical records). Feasibility was assessed by the proportion of self-reports completed and accuracy was established using month-by-month and per participant comparison of self-reports with administrative data. RESULTS: Data were available for 145/163 eligible study participants (89%, mean age 69 (SD 9) years, mean forced expiratory volume in 1 s 51 (SD 19) % predicted; n = 83 male). For 1725 months where data collection was possible, 1160 (67%) telephone questionnaires and 331 (19%) diaries were completed. Accuracy of recall varied according to type of health care encounter and self-report method, being higher for telephone questionnaire report of emergency department presentation (Kappa 0.656, p < 0.001; specificity 99%, sensitivity 59%) and hospital admission (Kappa 0.669, p < 0.001; specificity 97%, sensitivity 68%) and lower for general practitioner (Kappa 0.400, p < 0.001; specificity 62%, sensitivity 78%) and medical specialist appointments (Kappa 0.458, p < 0.001; specificity 88%, sensitivity 58%). A wide variety of non-medical encounters were reported (allied health and nursing) which were not captured in administrative data. CONCLUSION: For self-reported methods of healthcare utilisation in people with COPD following pulmonary rehabilitation, monthly telephone questionnaires were more frequently completed and more accurate than diaries. Compared to administrative records, self-reports of emergency department presentations and inpatient admissions were more accurate than for general practitioner and medical specialist appointments. TRIAL REGISTRATION: NCT01423227 at clinicaltrials.gov SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12913-020-05920-0.