Gaining an accurate reflection of the reality of palliative care through the use of free-text feedback in questionnaires: the AFTER study

Abstract

Background In healthcare, many service evaluation questionnaires use free-text boxes without formal mechanisms for analysis. Patients and carers spend time documenting concerns that are often ignored or managed locally in an ad hoc manner. Currently, palliative care experiences of patients and carers in Wales are measured using a service evaluation questionnaire, comprising both closed and open-ended questions. Previous research, exploring free-text responses from this questionnaire, suggests that questionnaire refinement should accommodate service users' expressed priorities and concerns, and highlights the need to incorporate free-text data analysis strategies during study design. Methods Results from a previous analysis of 596 free-text responses provided the basis for an expert consensus day, where the current service evaluation questionnaire was refined. The refined version was tested during cognitive interviews with patients (n=10) and carers (n=7) receiving palliative care from 1 of 2 UK hospices. Data were analysed thematically. Results Interviews highlighted minor areas for change within the questionnaire and provided broader insight into patients' experiences of palliative care services. Patients and carers place an emphasis on simplifying language, decreasing the numeric response range and reducing written instructions; relying instead on visual cues, including formatting and layout. Findings highlighted the importance patients attached to providing meaningful free-text contributions. Conclusions Questionnaire refinement should use the patient perspective to effectively facilitate respondent understanding, pertinence and usability. The importance of employing data analysis strategies during questionnaire design may reduce research waste, thus enabling a better interrogation of service provision.

A Review of Unsolicited Comments on the CAHPS 5.0 Health Plan Survey

“…By providing written comments on the survey, respondents ensured that their stories did not get "lost" within the standardized scoring rubrics of CAHPS 5.0. 28,29 We believe that deliberately providing space for Medicaid patients to share comments, as well as receiving further guidance for qualitative content and sentiment analysis, would provide invaluable context for interpreting overall survey results. Moreover, a robust monitoring and evaluative process would allow programs to respond to patient comments in meaningful ways and to continue to respond to the frequently complex and challenging experiences of navigating a continually evolving state health insurance program by the most vulnerable populations.…”

“…By providing written comments on the survey, respondents ensured that their stories did not get “lost” within the standardized scoring rubrics of CAHPS 5.0. 28,29…”

“…9 For this discussion, empowerment theory speaks to an individual's ability to advocate for their own self-interests regarding healthcare. 10 CAHPS 5.0 By design, CAHPS 5.0 is not structured to accept open-ended text entries from respondents. Nevertheless, Medicaid recipients often write comments in the margins of the CAHPS 5.0 survey or submit comments as supplementary text (ie, handwritten or typed notes) to provide relevant context, explanations, or concerns.…”

“…9 For this discussion, empowerment theory speaks to an individual's ability to advocate for their own self-interests regarding healthcare. 10…”