JMIR Publications

ABSTRACT

Background:

Longitudinal follow-up of older persons living with HIV (PWH) is essential for ascertainment of aging-related clinical and behavioral outcomes, and self-administered questionnaires are an essential tool for collecting behavioral information in clinical research involving PWH. Online data collection has been shown to result in higher data quality than paper/pencil questionnaires when used to collect self-reported data in a wide range of populations. The option of remote online data collection may also increase retention in long-term research studies. However, the acceptability and feasibility of online data collection in clinicOur specific aims were to: (1) assess acceptability and feasibility of an online survey to collect information on sexual, substance use and physical activity behaviors; (2) compare the data quality of online vs. paper/pencil questionnaire administration; and (3) summarize online survey metrics including frequency of and reasons for survey non-completion and frequency of ‘rather not answer’ responses.al research involving older PWH has never been studied.

Objective:

Our specific aims were to: (1) assess acceptability and feasibility of an online survey to collect information on sexual, substance use and physical activity behaviors; (2) compare the data quality of online vs. paper/pencil questionnaire administration; and (3) summarize online survey metrics including frequency of and reasons for survey non-completion and frequency of ‘rather not answer’ responses.

Methods:

This pilot study took place within the AIDS Clinical Trials Group (ACTG) A5322 study, a longitudinal cohort of men and women living with HIV ages 40 and older and followed at 32 clinical sites in the U.S. and Puerto Rico. Four sites participated. A short online survey was created using 3 self-administered questionnaires typically completed in A5322 via paper/pencil format. Pilot study participants completed these questionnaires via online survey at one research visit in lieu of paper/pencil administration. Two questions were added to assess feasibility, defined as participants’ perception of the ease of completing the survey (very hard, hard, easy, very easy) and their preferred format (computer/tablet, paper/pencil, no preference) for completing the questions in the future (acceptability). Feasibility and acceptability were summarized overall and by demographic and clinical characteristics; the proportion of evaluable data by online vs. previously administered paper/pencil questionnaires (data quality) was compared for each question.

Results:

Acceptability and feasibility were high overall (50% preferring computer/tablet, 38% no preference, 12% paper/pencil; 93% reported survey easy/very easy to complete). Older age was associated with lower odds of preferring computer/tablet to paper/pencil format (odds ratio per one year increase in age=0.91, 95% confidence interval=0.85, 0.98). Individuals who found the survey hard/very hard had a lower median neurocognitive test score than those who found it easy/very easy. Data quality with online survey administration was similar to or higher than with paper/pencil administration for most questions; data quality within the online survey did not vary by age or neurocognitive function.

Conclusions:

Online survey administration was acceptable and feasible in this cohort of older adults living with HIV infection, and data quality was high. Online data collection can be a useful tool for valid data collection, and potentially as a way to improve retention in long-term study follow-up.