Retaining Participants in Outpatient and Community-Based Health Studies

Abstract

Loss to follow-up can introduce bias into research, making it difficult to develop inclusive evidence-based health policies and practice guidelines. We aimed to deepen understanding of reasons why participants leave or remain in longitudinal health studies. We interviewed 59 researchers and current and former research participants in six focus groups (n = 55) or interviews (n = 4) at three study centers in a large academic research institution. We used minimally structured interview guides and inductive thematic analysis to explore participant-level, study-level, and contextual participation barriers and facilitators. Four main themes emerged: transportation, incentives and motivation, caregiver concerns, and the social and physical environment. Themes shared crosscutting issues involving funding, flexibility, and relationships between researchers and research participants. Study-level and contextual factors appear to interact with participant characteristics, particularly socioeconomic status and disease severity to affect participant retention. Participants’ characteristics do not seem to be the main cause of study dropout. Researchers and funders might be able to address contextual and study factors in ways that reduce barriers to participation.

Participant Retention in a Longitudinal Study: Do Motivations and Experiences Matter?

“…Participants may be more likely to leave a study if they feel their primary reason for joining the study is not being met, which is consistent with findings from qualitative research conducted with former study participants (Odierna and Bero 2014). When controlling for demographics, reasons were not significant predictors for retention.…”

“…Alternatively, they can be a facilitator if motivations are adequately addressed or altruistic in nature (e.g., belief in research, volunteerism) (Odierna and Bero 2014). Few empirical studies have examined motivations for enrolling in a study or directly related these motivations to retention (Daniels et al 2006;Lamvu et al 2005).…”

Integrating EMDR into an evolutionary‐based therapy for depression: a case study

“…Recently, two evolutionary-based therapies for depression have been suggested 31; 32. Despite the similar theoretical basis the suggested interventions are significantly different.…”

“…Krupnik's treating depression downhill (TDD) therapy relies heavily on experiential approach. In its initial phases it seeks to facilitate the depressive response by helping it “bottom out” through the experience of acceptance rather than to target cognitive biases 32. In that it follows the contention that transition from protest to despair is the function of depressive response 33.…”

Symptom Assessment Solutions for In-Home Supportive Services and Diverse Older Adults: A Roadmap for Change

“…Discussion guides were informed by the advisory board, palliative care and aging experts, and previous studies. [12][13][14] We asked about the potential role of an IHSS symptom assessment program, barriers and facilitators, and logistical factors that could impede or support the program's implementation (Table 1).…”