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Additional file 1. CODE-GER Questionnaire (in English language) with the five thematically arranged sections from the original CODE TM in order to facilitate the completion of the questionnaire for relatives.
GUID: 46A406A7-5AFD-4D70-8D6B-7BF4CB0E3810CODE-GER may be obtained from the authors of this study. The datasets used and/or analysed during the current study are available from A.R.V. or M.H. on reasonable request.
International 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).
Translation 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).
Out 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.
The 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.
This study was registered retrospectively on the 25th of January 2018 at the German Clinical Trials Register (DRKS00013916).
Keywords: Terminal care, Quality of health care, Proxy, Hospital, Validation studies, outcome assessment
According to the founder of modern palliative care (PC) Cicely Saunders, physical, psychological, social and spiritual needs have to be considered when caring for dying patients and their families [1]. Despite the clear need for PC, not all dying patients can be treated on specialized wards due to limited access or space [2, 3]. Therefore, it is of great importance to extend the principles of PC to any wards where people die.
It is equally important to assess the current state of quality of care (QOC) on these wards, and to identify unmet needs of patients and their next-of-kin. While the patients themselves are often unable to provide information about the perceived quality of their care, their next-of-kin can evaluate the last days of their loved ones [4]. They are not only providers of support to the patients, but also recipients of PC themselves [5]. Therefore an instrument which assesses the care given to the patient, but also to their next-of-kin, is crucial to represent holistic care at the end of life. To the best of our knowledge the only instrument that assesses a similar construct in German is the “Quality of Death and Dying” (QoDD) which was validated by some of this study’s authors [6]. However, QoDD surveys the quality of death and not the quality of care given to the dying patient.
A suitable instrument for this purpose, the “Care of the Dying Evaluation” (CODE™) was developed by selecting key indicators from the rather long “Evaluation Care and Health Outcomes – for the Dying” (ECHO-D) [7]. CODE™ is a self-assessment questionnaire which retrospectively evaluates the QOC in the last 2 days of a patient’s life by surveying next-of-kin. Twenty-eight core items cover different aspects of QOC (care received from healthcare team, symptom control, communication with the healthcare team, emotional and spiritual support, circumstances surrounding death). Verbal anchors represent a 5-point (0–4), 4-point (0–3) or 3-point (0–2) Likert scale. The higher the value, the better the QOC [7]. Three key composite scales which are represented by 12 of the 28 core items, survey “Environment”, “Care” and “Communication”. The items were initially assigned to the scales based on theoretical assumptions. Furthermore, CODE™ captures overall impression concerning treatment with respect and dignity by doctors and nurses as well as support of relatives. Ten items assess demographic or disease-related information [7].
CODE™ has so far been validated for the United Kingdom [7]. Internal consistencies of the key composite scales were good (α = 0.79–0.89). Test-retest-reliability was moderate to good [7]. A recent systematic review on tools measuring quality of death, dying and care completed after death identified CODE™ as an instrument with promising strong psychometric properties, which would benefit from further development and validation [8].
The aim of this study was to provide a German version of CODE™ (CODE-GER) and to evaluate its psychometric properties.
Between 01/2013 and 04/2013, CODE™ was translated forward and backward according to EORTC guidelines [9]. To assess content validity, ‘think aloud’ interviews and verbal probing took place with 15 next-of-kin of deceased patients at 2 PC units (Mainz: n = 7; Erlangen: n = 8). Results from this pilot testing were discussed by an expert panel with expertise in PC. No items were evaluated as inappropriate, confusing or embarrassing. The questionnaire itself was rated as useful. Adaptions to the wording and formal structure were made. The 28 core items on QOC were maintained without modification. One item (recommendability of ward) was added to the overall section (originally three items). The 28 core items on QOC as well as the overall impression questions are shown in Table 1 . Three items (type of ward, nationality of caregiver, amount of days on the ward where the patient had died) were added to the demographic section (originally 10 items compared to the original English version). The items of the resulting questionnaire CODE-GER used in this study are shown in Table Table1 1 .
CODE GER - items included in psychometric analyses and overall impression questions