title: 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.
authors.affiliation: T y^ Hafan Children's Hospice, Vale of Glamorgan, UK.
authors.forename: Anna Victoria
authors.initials: AV
authors.lastname: Bowyer
authors.affiliation: Department of Palliative Medicine, Velindre Cancer Centre, Cardiff, UK.
authors.forename: Ilora
authors.initials: I
authors.lastname: Finlay
authors.affiliation: School of Healthcare Sciences Cardiff University, Cardiff, UK.
authors.forename: Jessica
authors.initials: J
authors.lastname: Baillie
authors.affiliation: Marie Curie Palliative Care Research Centre, School of Medicine, Cardiff University, Cardiff, UK.
authors.forename: Anthony
authors.initials: A
authors.lastname: Byrne
authors.affiliation: Marie Curie Palliative Care Research Centre, School of Medicine, Cardiff University, Cardiff, UK.
authors.forename: Jacqui
authors.initials: J
authors.lastname: McCarthy
authors.affiliation: Marie Curie Palliative Care Research Centre, School of Medicine, Cardiff University, Cardiff, UK.
authors.forename: Catherine
authors.initials: C
authors.lastname: Sampson
authors.affiliation: Powys Health Board and South West Wales Cancer Network, Bro Ddyfi Community Hospital, Machynlleth, Powys, UK.
authors.forename: Veronica
authors.initials: V
authors.lastname: Snow
authors.affiliation: Marie Curie Palliative Care Research Centre, School of Medicine, Cardiff University, Cardiff, UK.
authors.forename: Annmarie
authors.initials: A
authors.lastname: Nelson
mesh_terms: D017028:Caregivers / Q000523:psychology*; D005246:Feedback; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000523:psychology*; D017060:Patient Satisfaction; D011787:Quality of Health Care; D011795:Surveys and Questionnaires; D014852:Wales
keywords: Cognitive Interviewing; Palliative Care; Patient-Perspective; Qualitative Research; Research Waste