Evidence map›Paper›PMID 26888770›Full record

ArticleBMJ supportive & palliative care2019

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

Anna Victoria Bowyer, Ilora Finlay, Jessica Baillie, Anthony Byrne, Jacqui McCarthy, Catherine Sampson, Veronica Snow, Annmarie Nelson

Open access · hybridAbstract read
In one paragraph

Article in BMJ supportive & palliative care, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
0.9field-weighted citation impact, top 20% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed, 5 citations in OpenAlex.

  1. Article
  2. Article
  3. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors at 4 institutions in 1 country.

Anna Victoria BowyerT y^ Hafan Children's Hospice, Vale of Glamorgan, UK.
Ilora FinlayDepartment of Palliative Medicine, Velindre Cancer Centre, Cardiff, UK.
Jessica BaillieSchool of Healthcare Sciences Cardiff University, Cardiff, UK.
Anthony ByrneMarie Curie Palliative Care Research Centre, School of Medicine, Cardiff University, Cardiff, UK.
Jacqui McCarthyMarie Curie Palliative Care Research Centre, School of Medicine, Cardiff University, Cardiff, UK.
Catherine SampsonMarie Curie Palliative Care Research Centre, School of Medicine, Cardiff University, Cardiff, UK.
Veronica SnowPowys Health Board and South West Wales Cancer Network, Bro Ddyfi Community Hospital, Machynlleth, Powys, UK.
Annmarie NelsonMarie Curie Palliative Care Research Centre, School of Medicine, Cardiff University, Cardiff, UK.
Cardiff University · GBBronllys Hospital · GBMarie Curie · GBVelindre Cancer Centre · GB

Funding

Marie Curie MCCC-FCO-11-C
6 · The paper itself

Abstract

backgroundIn 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.

methodsResults 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.

resultsInterviews 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.

conclusionsQuestionnaire 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.

Indexed as

Patient SatisfactionQuality of Health CareCaregiversFeedbackFemaleHumansMaleMiddle AgedPalliative CareSurveys and QuestionnairesWalesCognitive InterviewingPalliative CarePatient-PerspectiveQualitative ResearchResearch Waste

Identifiers

PMID26888770
PMCPMC6579493
OpenAlexW2276944432

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.