ArticlePalliative medicine2016
Discovering the hidden benefits of cognitive interviewing in two languages: The first phase of a validation study of the Integrated Palliative care Outcome Scale.
Article in Palliative medicine, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 90 papers, 3 of them syntheses that pooled it.
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Who cites it
90 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- The experiences of minority language users in health and social care research: A systematic review.The International journal of health planning and management · 2025Pooled it
- Systematic Review of the Effect of a One-Day Versus Seven-Day Recall Duration on Patient Reported Outcome Measures (PROMs).The patient · 2023Pooled it
- A Systematic Review of the Development and Implementation of Needs-Based Palliative Care Tools in Heart Failure and Chronic Respiratory Disease.Frontiers in cardiovascular medicine · 2022Pooled it
- The ALLAN trial: impact of early home-based palliative care on emergency care and hospitalisation in advanced gastrointestinal cancer patients.British journal of cancer · 2026Trial
- Early palliative care for patients with glioblastoma: A randomized phase III clinical trial (EPCOG).Neuro-oncology · 2026Trial
- The effect of community-based palliative supportive care integrated with primary health care (PHC) on the outcomes of terminally ill cancer patients.BMC primary care · 2025Trial
- Quality of life for patients with advanced gastrointestinal cancer randomised to early specialised home-based palliative care: the ALLAN trial.British journal of cancer · 2024Trial
- Measurement equivalence of the paper-based and electronic version of the Integrated Palliative care Outcome Scale (IPOS): A randomised crossover trial.Palliative medicine · 2023Trial
- Namaste Care in nursing care homes for people with advanced dementia: protocol for a feasibility randomised controlled trial.BMJ open · 2018Trial
- Factors associated with supportive care needs in glioma patients in the neuro-oncological outpatient setting.Journal of neuro-oncology · 2017Trial
- Refining the Immersive Technology Evaluation Measure for Virtual Reality Clinical Skills Among Native Arabic-Speaking Medical Students: Qualitative Study.JMIR medical education · 2026Article
- Multidimensional Symptom Burden Among Institutionalised Older Adults: Associations with Functional Status, Psychological Factors and Quality of Life.Healthcare (Basel, Switzerland) · 2026Article
- Symptom and problem burden, performance status and palliative care phases in specialist palliative care: cross-sectional analysis of care episodes.BMJ supportive & palliative care · 2026Article
- Thinking-aloud methodology applied to health questionnaire development and validation: a scoping review.BMC medical research methodology · 2026Article
- The Integrated Palliative Outcome Scale (IPOS): A tool for assessing needs and shaping individualized care plans in hospice settings.Palliative & supportive care · 2026Article
- Digital patient-reported outcome measures in palliative home care: A feasibility study.Palliative medicine · 2026Article
- Assessing the feasibility of use and content validity of ICECAP-CPM with bereaved family members of young people who died from serious illness: a UK think-aloud study.BMC palliative care · 2026Article
- Is digitalization still an uncharted territory for palliative care? Use of electronic patient records and assessment instruments in German specialist palliative care: results of an online survey.BMC health services research · 2025Article
- Palliative Home Care Based on Clinically Relevant Scientific Measures: A Cross-Sectional Study.The American journal of hospice & palliative care · 2025Article
- Association of Systemic Inflammation with Nocturnal Sleeping Time Among Terminally Ill Patients with Cancer: Preliminary Findings.Healthcare (Basel, Switzerland) · 2025Article
30 more citing papers are in PubMed but not listed here.
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Authors and funding
12 authors.
Funding
Abstract
backgroundThe Integrated Palliative care Outcome Scale is a newly developed advancement of the Palliative care Outcome Scale. It assesses patient-reported symptoms and other concerns. Cognitive interviewing is recommended for questionnaire refinement but not adopted widely in palliative care research.
aimTo explore German- and English-speaking patients' views on the Integrated Palliative care Outcome Scale with a focus on comprehensibility and acceptability, and subsequently refine the questionnaire.
methodsBi-national (United Kingdom/Germany) cognitive interview study using 'think aloud' and verbal probing techniques. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis and pre-defined categories. Results from both countries were collated and discussed. The Integrated Palliative care Outcome Scale was then refined by consensus. SETTING/
participantsPurposely sampled patients from four palliative care teams in palliative care units, general hospital wards and in the community.
resultsA total of 15 German and 10 UK interviews were conducted. Overall, comprehension and acceptability of the Integrated Palliative care Outcome Scale were good. Identified difficulties comprised the following: (1) comprehension problems with specific terms (e.g. 'mouth problems') and length of answer options; (2) judgement difficulties, for example, due to the 3-day recall for questions; and (3) layout problems. Combining the results from both countries (e.g. regarding 'felt good about yourself') and discussing them from both languages' perspectives resulted in wider consideration of the items' meaning, enabling more detailed refinement.
conclusionCognitive interviewing proved valuable to increase face and content validity of the questionnaire. The concurrent approach in two languages - to our knowledge the first such approach in palliative care - benefited the refinement. Psychometric validation of the refined Integrated Palliative care Outcome Scale is now underway.
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Registered trials
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.