Interviewer versus self-administered health-related quality of life questionnaires - does it matter?

Abstract

Background: Patient-reported outcomes are measured in many epidemiologic studies using self- or interviewer-administered questionnaires. While in some studies differences between these administration formats were observed, other studies did not show statistically significant differences important to patients. Since the evidence about the effect of administration format is inconsistent and mainly available from cross-sectional studies our aim was to assess the effects of different administration formats on repeated measurements of patient-reported outcomes in participants with AIDS enrolled in the Longitudinal Study of Ocular Complications of AIDS.

Methods: We included participants enrolled in the Longitudinal Study of Ocular Complications in AIDS (LSOCA) who completed the Medical Outcome Study [MOS] -HIV questionnaire, the EuroQol, the Feeling Thermometer and the Visual Function Questionnaire (VFQ) 25 every six months thereafter using self- or interviewer-administration. A large print questionnaire was available for participants with visual impairment. Considering all measurements over time and adjusting for patient and study site characteristics we used linear models to compare HRQL scores (all scores from 0-100) between administration formats. We defined adjusted differences of ≥0.2 standard deviations [SD]) to be quantitatively meaningful.

Results: We included 2,261 participants (80.6% males) with a median of 43.1 years of age at enrollment who provided data on 23,420 study visits. The self-administered MOS-HIV, Feeling Thermometer and EuroQol were used in 70% of all visits and the VFQ-25 in 80%. For eight domains of the MOS-HIV differences between the interviewer- and self- administered format were < 0.1 SD. Differences in scores were highest for the social and role function domains but the adjusted differences were still < 0.2 SD. There was no quantitatively meaningful difference between administration formats for EuroQol, Feeling Thermometer and VFQ-25 domain scores. For ocular pain (VFQ-25), we found a statistically significant difference of 3.5 (95% CI 0.2, 6.8), which did, however, not exceed 0.2 SD. For all instruments scores were similar for the large and standard print formats with all adjusted differences < 0.2 SD.

Conclusions: Our large study provides evidence that administration formats do not have a meaningful effect on repeated measurements of patient-reported outcomes. As a consequence, longitudinal studies may not need to consider the effect of different administration formats in their analyses.

Figure 1

Study participants and administration formats. The graph shows the percentage of study participants and the different administration formats they chose since time of enrolment. All study visits (n = 23,420) of all participants (n = 2,261) contributed to the analyses. The percentage of self administration with the standard print increased from 62% in the first year of enrolment to 75% if participants were enrolled six years or more. Interviewer administration with standard print decreased from 37% to 23% and self administration with large print increased from 1% to 2%.

Figure 2

Relationship of administration format with exposure, outcome and other variables. A hypothetical scenario is represented by a causal diagram. Investigators may be interested in comparing health-related quality of life (HRQL) between HIV-infected patients with and without AIDS. Both interviewer and self-administration are available. Patients with the AIDS-defining illnesses cytomegalovirus (CMV) retinitis or brain toxoplasmosis are more likely to require interviewer administration because of visual or cognitive impairment, respectively. Administration format is not a confounder since it is on the causal pathway from exposure to outcome and does not cause CMV retinitis nor brain toxoplasmosis. The table shows three scenarios. In the first scenario the administration format is restricted to self-administration and the difference in HRQL is 20 units. In the second and third scenario, both interviewer and self-administration are available and it is assumed that patients with AIDS are more likely to require interviewer administration because of CMV retinitis or brain toxoplasmosis. The effect of interviewer-administration is ± 10 units in the second and third scenario, respectively, which has an effect of ± 2 units on the between-group comparisons.