Assessment of the quality of end-of-life care: translation and validation of the German version of the “Care of the Dying Evaluation” (CODE-GER) - a questionnaire for bereaved relatives

Health and Quality of Life Outcomes

Andreas Seifert¹  Christoph Ostgathe²  Maria Heckel²  Stephanie Stiel³  Annika Vogt⁴  Christina Gerlach⁴  Swantje Goebel⁴  Martin Weber⁴  Sandra Stephanie Mai⁴ 

[1] Centre for Educational Research and Teacher Training (PLAZ), Paderborn University, Warburger Straße 100, 33098, Paderborn, Germany;Friedrich-Alexander-Universität Erlangen- Nürnberg (FAU), Department of Palliative Medicine, CCC Erlangen –EMN, Krankenhausstraße 12, 91054, Erlangen, Germany;Hannover Medical School, Institute for General Practice, Carl-Neuberg-Straße 1, 30625, Hannover, Germany;Interdisciplinary Palliative Care Unit, III. Department of Medicine, University Medical Center of the Johannes Gutenberg University of Mainz, Langenbeckstr.1, 55131, Mainz, Germany;

关键词: Terminal care;    Quality of health care;    Proxy;    Hospital;    Validation studies, outcome assessment;   

DOI  :  10.1186/s12955-020-01473-2

来源: Springer

【 摘 要 】

BackgroundInternational studies indicate deficits in end-of-life care that can lead to distress for patients and their next-of-kin.The aim of the study was to translate and validate the “Care of the Dying Evaluation” (CODE) into German (CODE-GER).MethodsTranslation according to EORTC (European Organisation for Research and Treatment of Cancer) guidelines was followed by data collection to evaluate psychometric properties of CODE-GER. Participants were next-of-kin of patients who had died an expected death in two hospitals. They were invited to participate at least eight, but not later than 16 weeks after the patient’s death. To calculate construct validity, the Palliative care Outcome Scale (POS) was assessed. Difficulty and perceived strain of answering the questionnaire were assessed by a numeric scale (0–10).ResultsOut of 1137 next-of-kin eligible, 317 completed the questionnaire (response rate: 27.9%). Data from 237 main sample participants, 38 interraters and 55 next-of-kin who participated for repeated measurement were analysed. Overall internal consistency, α = 0.86, interrater reliability, ICC (1) = 0.79, and retest-reliability, ICC (1, 2) = 0.85, were good. Convergent validity between POS and CODE-GER, r = −.46, was satisfactory. A principal component analysis with varimax rotation showed a 7-factor solution. Difficulty, M = 2.2; SD ± 2.4, and perceived strain, M = 4.1; SD ± 3.0, of completing the questionnaire were rather low.ConclusionThe results from the present study confirm CODE-GER as a reliable and valid instrument to assess the quality of care of the dying person. More over our study adds value to the original questionnaire by proposing a deepened analysis of obtained data. The development of seven subscales increases its potential for further surveys and research.Trial registrationThis study was registered retrospectively on the 25th of January 2018 at the German Clinical Trials Register (DRKS00013916).

【 授权许可】

CC BY