Discovering the hidden benefits of cognitive interviewing in two languages: The first phase of a validation study of the Integrated Palliative care Outcome Scale

Abstract

Background:The 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.Aim:To 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.Methods:Bi-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/participants:Purposely sampled patients from four palliative care teams in palliative care units, general hospital wards and in the community.Results:A 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.Conclusion:Cognitive 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.

Feasibility and acceptability of a patient-reported outcome intervention in chronic heart failure

“…None of the patients found the IPOS burdensome. The IPOS is a generic rather than disease-specific PROM and was designed to assess for palliative symptoms and other concerns 10. Those with advanced progressive disease including CHF and cancer experience many common symptoms,47 so it is unsurprising that patients and nurses described the IPOS as appropriate and relevant to their experience of the illness burden in CHF.…”

“…The education and training followed a heterogeneous pedagogical approach with five components: (1) patient-centred care overview, (2) rationale for PROM use, (3) rationale for IPOS, (4) IPOS case studies and (5) practicalities of IPOS use in the clinic. The IPOS has 10 questions with two open questions covering patients’ main concerns and symptoms, respectively, and a five-point Likert scale (0–4) accompanying common symptoms, patient and family distress, existential well-being, sharing feelings with family, information available and practical concerns 10. After delivery of the education and training to the HFNs, recruited patients completed the IPOS at their next clinic visit.…”

“…Given the paucity of CHF palliative care needs assessment research, palliative-specific PROM use to identify patients’ advanced symptoms and palliative concerns is timely. This intervention involves the Integrated Palliative care Outcome Scale (IPOS), a PROM designed to capture palliative symptoms and concerns,10 with integrated healthcare professional education and training. The intervention’s aim is to improve identification and management of CHF advanced symptoms and palliative concerns.…”

Patients’ experiences of using the Integrated Palliative care Outcome Scale for a person‐centered care: A qualitative study in the specialized palliative home‐care context

“…The most frequently used are the Edmonton Symptom Assessment System, which measures perceived symptom severity, and the Palliative care Outcome Scale (POS), a multidimensional instrument which measures symptoms and psychosocial problems (Higginson et al, ; Stiel et al, ). The Integrated Palliative care Outcome Scale (IPOS) is intended for use in palliative care, developed as a response to patients’ and clinicians’ demands for a holistic view of patients’ concerns (Schildmann et al, ). IPOS contains ten questions; the first of these is an open question in which the patient can state their main challenges.…”

‘How can patient and carers’ experiences shape services?’ The Royal Society of Medicine palliative care competition

“…It was developed in 1999 as a brief questionnaire which enabled patients to rank the issues that affected them the most 8. POS takes approximately 10 min to complete,5 and the scores can be used by the multidisciplinary team to prioritise problems and focus on the areas which matter most to the patient.…”