Stroke Survey Struggles: How to Boost Response Rates
"Uncover the reasons why stroke survivors skip mailed surveys and learn how phone interviews can bridge the gap for better data collection."
Collecting patient-reported outcomes (PROMs) is increasingly vital for enhancing healthcare services, especially in stroke recovery. Understanding a patient's perceived health status helps to tailor and improve care. However, obtaining these insights through traditional methods like postal surveys can be challenging.
The Australian Stroke Clinical Registry (AuSCR) faced this challenge when collecting data from stroke survivors 90-180 days post-stroke. While they used a standard postal survey approach, a significant number of patients didn't respond. To understand why, the registry incorporated telephone interviews for non-respondents.
These interviews revealed valuable insights into the barriers preventing stroke survivors from completing mailed surveys. By understanding these obstacles, clinical registries and researchers can refine their methods, improve response rates, and gather more complete and accurate data. This article dives into the key reasons behind survey non-response and highlights the benefits of using telephone interviews to complement postal surveys.
Top Reasons Stroke Survivors Don't Complete Mailed Surveys
The AuSCR's telephone interviews uncovered three primary reasons why stroke survivors or their caregivers didn't return mailed surveys. These weren't just simple oversights; they reflected significant challenges and experiences in the recovery process.
- Health-Related Time Constraints: The period following a stroke is often filled with numerous medical appointments, therapies, and adjustments to daily life. Both survivors and their caregivers reported feeling overwhelmed and lacking the time to complete the survey amidst these commitments. As one respondent put it, the survey forms were "sitting in a big pile of papers..." representing just one more task on a long list.
- Confusion About Survey Questions: Many respondents found the survey questions, particularly those in the EuroQol-5D-3L (EQ-5D-3L), difficult to understand or answer accurately. The limited response options in the EQ-5D-3L sometimes failed to capture the nuances of their condition. For example, the EQ-5D-3L offers a limited scale on mobility, and respondents said, "I didn't know how to answer the questions...". Furthermore, some were unsure whether to consider pre-existing conditions when rating their overall health.
- Denial of Stroke: Surprisingly, some respondents denied having had a stroke, especially those who experienced a transient ischemic attack (TIA) or a "mini-stroke." This denial often stemmed from a misconception that a stroke always results in severe disability. Consequently, they didn't believe the survey applied to them. As one person stated simply, "I didn't have a stroke..."
The Power of a Phone Call: Improving Data Collection and Patient Experience
While postal surveys remain a valuable tool, this research underscores the benefits of incorporating telephone interviews into data collection strategies. Telephone interviews provide an opportunity to clarify confusing questions, address concerns, and build rapport with participants.
The AuSCR experience suggests that approximately 20% of stroke survivors prefer completing surveys over the telephone. This personal touch can make a significant difference, especially for those who are time-constrained or overwhelmed by their new circumstances post-stroke.
Ultimately, a multi-faceted approach that combines postal surveys with telephone support can lead to more complete and accurate data, providing valuable insights for improving stroke care and outcomes. By listening to the voices of stroke survivors, we can refine our methods and ensure that their experiences are accurately reflected in research and clinical practice.