Text Messaging for Longitudinal Data Collection From Adults With Glomerular Disease: Lessons From the Cure...

Mobile health technologies such as text messaging have been used to support self-management in chronic disease. This study sought to understand the use of and responsiveness to text messaging for data collection in an international longitudinal observational study.

A longitudinal text messaging program was administered in the Cure Glomerulonephropathy Network, an observational cohort study of primary glomerulonephropathies. Consented participants were sent monthly texts querying symptoms, medication adherence, relapses, or remissions. Participants responded via text.

Adults enrolled in the Cure Glomerulonephropathy Network from October 23, 2020, to April 30, 2024, participated remotely via text messaging.

Age, histologic diagnosis, months since diagnosis using kidney biopsy, education level, and English as the primary language.

Program reach (proportion who did not opt out), response rate, and ongoing engagement were assessed.

Multivariable logistic regression models were fitted to assess associations between responsiveness to text and participant characteristics.

71% (n = 948) did not opt out, and of those, 54% (512/948) responded to at least 1 text. Responders were more likely to be younger (OR, 0.97 per additional year; 95% CI, 0.97-0.98) and had more formal education (high school education: OR, 0.63 and 95% CI, 0.41-0.98, compared with some college) than nonresponders. Those who did not speak English primarily were less likely to respond (OR, 0.64; 95% CI, 0.42-0.98) than primary English speakers. In an unadjusted subgroup analysis of those with census tract data, responders resided in communities with greater community resources than nonresponders (P < 0.001).

Unable to determine reasons for nonresponse to text messaging.

Although text messaging does not require a smartphone and may reduce some barriers to research participation, we found that more vulnerable and older patients were less likely to respond. Additional efforts are needed to support targeted engagement with these participants to ensure that data collection overall remains equitable.