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.
Response Rates and Stroke Survey Context
Virginia’s 2024 hospital stroke inventory survey received 110 responses—106 complete and four partial—from 111 possible sites, a 99.1% response rate. The survey ran from April 16 to May 10, 2024, and included Virginia hospitals and free-standing emergency departments. By contrast, a stroke-patient follow-up study using postal questionnaires at three and 12 months after hospital discharge reported that the three-month response rate was lower than desired and examined telephone pre-contact as a possible measure. Stroke survivors or their carers and family members may explain in telephone interviews why they did not respond to a mailed survey.
Response Rates, Bias, and Representation
A 2003 review of survey methods in stroke medicine identifies improving response rates as a common concern in survey research and emphasizes that potential biases matter when interpreting results against the study and reference populations. A review of 1,014 surveys described in 703 articles across 17 journals from 2010 to 2020 examined reported response-rate information. Another source describes response rate—the number of people who answered—as one factor affecting a study’s validity and reliability. For patient surveys, methods that improve response rates may also help better represent patient experiences and assess equity-focused quality improvement.
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..."
Registry Follow-Up and the Missing Patient Perspective
A systematic review of data collection methods and resourcing in national stroke registries notes that clinical registries using more exhaustive follow-up protocols often still report less-than-optimal response rates. A realist synthesis protocol on patient-reported outcome measures describes the Australian Stroke Clinical Registry (AuSCR) as having recently included a patient-reported outcome measure. Despite initiatives such as this, the protocol identifies the patient perspective as often missing from routine post-stroke outcome data. Separately, a 2026 survey of telestroke networks received responses from 88 of 254 networks and compared reported quality metrics with metrics extracted from published literature.
Barriers That Undermine Survey Responses
A 2026 discussion of survey data collection identifies poorly framed questions and excessively lengthy surveys as possible engagement problems. It also points to technical barriers and survey fatigue as contributors to low response quality, while noting that low response rates increase the risk of non-response bias. Online surveys can offer cost-effectiveness and potential reach, but a 2023 source says low response rates remain a key contributor to bias and to the overall quality of results. A study of declining clinician-survey response rates used a cross-sectional fax-back survey of a random sample of family physicians and all gynecologists in British Columbia.
Comparing Survey Modes and Benchmarks
A systematic review set out to compare response rates for web surveys with alternative data-collection methods in epidemiologic and public health studies involving the general population. Its search covered PubMed, LILACS, SciELO, WebSM, and Google Scholar. A separate 2022 systematic review focused on strategies for improving both response rates and representativeness in patient-experience surveys. SurveyMonkey also offers response-rate benchmarks by industry, channel, and survey, based on its platform data; the provided source material does not give specific benchmark figures.
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.
Patient Experience as a Measure of Care
Research in the United States described in a study of patients’ assessments of stroke-care quality found a positive, strong association between compliance with stroke guidelines and patient satisfaction. To assess hospital-based stroke rehabilitation, Tyson and Turner combined a process audit with surveys of patient and staff opinions. They argued for using both approaches to evaluate rehabilitation. Taken together, these examples show how patient and staff feedback can complement assessments of care processes.
Future Stroke Research Priorities
A 2025 analysis of global stroke epidemiological trends reports rising incidence and disability-adjusted life years (DALYs), alongside decreases in age-standardized incidence and mortality rates since 1990. It identifies the fastest increases in incidence among females, with regional variation, and names high systolic blood pressure as a continuing key risk factor. The authors call for future prevention and treatment efforts that address differences by sex, age, and region. A 2023 review of stroke management reports that transactive surveys and multivariate regression findings linked delays in critical in-hospital management to timely deployment of the stroke group, coordination among multiple parts, and deferred decision-making.
Awareness, Disability, and Patient Experience
The supplied source reports that studies of a stroke-awareness campaign found variable success, while studies in the UK reported an impact on awareness and recognition and reductions in pre-hospital delays among stroke patients. It also reports that studies in Australia demonstrated an increase in an unspecified measure. In the survey material quoted by the source, the disability rate among stroke patients was 38.25%, described as similar to other studies. A survey of stroke patients in homes and healthcare institutions in France reported a disability rate of 34.4%.
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.