Valuing end-of-life care: translation and content validation of the ICECAP-SCM measure

Abstract

Background The evaluation of care strategies at the end of life is particularly important due to the globally increasing proportion of very old people in need of care. The ICECAP-Supportive Care Measure is a self-complete questionnaire developed in the UK to evaluate palliative and supportive care by measuring patient’s wellbeing in terms of ‘capability’. It is a new measure with high potential for broad and international use. The aims of this study were the translation of the ICECAP-Supportive Care Measure from English into German and the content validation of this version. Methods A multi-step and team-based translation process based on the TRAPD model was performed. An expert survey was carried out to assess content validity. The expert panel (n = 20) consisted of four expert groups: representative seniors aged 65+, patients aged 65+ living in residential care, patients aged 65+ receiving end-of-life care, and professionals in end-of-life care. Results The German version of the ICECAP-Supportive Care Measure showed an excellent content validity on both item- and scale-level. In addition, a high agreement regarding the length of the single items and the total length of the questionnaire as well as the number of answer categories was reached. Conclusions The German ICECAP-SCM is a valid tool to assess the quality of life at the end of life that is suitable for use in different settings. The questionnaire may be utilized in multinational clinical and economic evaluations of end-of-life care.

Methodological challenges and potential solutions for economic evaluations of palliative and end-of-life care: A systematic review

“…In total, we identified challenges that can be grouped into nine themes, with most of the studies relating to three of them: ambiguity in the selection of outcomes, 16,17,20 –22,26,34 –50,62,63,72,74–88 , non-standardised measurement and valuation of costs, 15,17,26,40 –42,47,51 –57,61,64,65,73,85,89 –93 and narrow costing perspective app-lied. 17,20,…”

“…35 Aligning with the capability approach, these measures concentrate on domains related to achieving a good life and good death for patients and their relatives. 35,45,50 Although several psychometric validation studies on the ICECAP-SCM have been recently published, 36,48,49,75 more comparative research is needed in this area. 45,50 Another measure is the Palliative Care Yardstick, which aims to assign a higher value to end-of-life care 22 and address dimensions such as caregiver impact 47 and valuation problems.…”

“…In total, we identified challenges that can be grouped into nine themes, with most of the studies relating to three of them: ambiguity in the selection of outcomes, 16,17,[20][21][22]26,[34][35][36][37][38][39][40][41][42][43][44][45][46][47][48][49][50]62,63,72,[74][75][76][77][78][79][80][81][82][83][84][85][86][87][88] , non-standardised measurement and valuation of costs, 15,17,26,[40][41][42]47,[51][52][53]…”

DNVF-Memorandum Versorgungsforschung im letzten Lebensjahr

“…Mixed Methods-Designs eignen sich u. a. zur Untersuchung von komplexen sozialen Phänomenen, zum Beispiel Selbstmanagement-Strategien von Patientengruppen (wie etwa mit chronischen Schmerzen 205 ), mit qualitativen Methoden und einer darauf aufbauenden quantitative Analyse. Des Weiteren können Mixed Methods-Designs im Rahmen der Übersetzung, Erprobung und Validierung spezieller Fragebogenverfahren und Untersuchungsinstrumente im Palliativbereich zum Einsatz kommen, wie etwa bei der Übersetzung und Validierung des ICECAP-SCM zur Messung der Versorgung und Lebensqualität am Lebensende 206 .…”