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  • 1
    Online Resource
    Online Resource
    Springer Science and Business Media LLC ; 2020
    In:  Supportive Care in Cancer Vol. 28, No. 9 ( 2020-09), p. 4539-4539
    In: Supportive Care in Cancer, Springer Science and Business Media LLC, Vol. 28, No. 9 ( 2020-09), p. 4539-4539
    Type of Medium: Online Resource
    ISSN: 0941-4355 , 1433-7339
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2020
    detail.hit.zdb_id: 1463166-0
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  • 2
    Online Resource
    Online Resource
    SAGE Publications ; 2018
    In:  American Journal of Hospice and Palliative Medicine® Vol. 35, No. 7 ( 2018-07), p. 1023-1029
    In: American Journal of Hospice and Palliative Medicine®, SAGE Publications, Vol. 35, No. 7 ( 2018-07), p. 1023-1029
    Abstract: Patient-reported outcomes are usually considered to be the gold standard assessment. However, for the assessment of quality of dying and death, ratings of informal caregivers (ICGs) or health-care professionals (HCPs) must be considered for ethical and methodological reasons. This article aims to present results of ICGs’ and HCPs’ estimates of the questionnaire, quality of dying and death (QoDD) on patients who died in PCUs and to compare the level of agreement of both ratings/raters. Methods: The parent validation study to this analysis assessed the ICG and HCP versions of the QoDD. Descriptive statistics are presented for each item in both versions. T tests for the estimation of differences between ICG and HCP were performed. Case-related absolute differences between estimates were analyzed regarding the extent of agreement and deviation. Results: Two hundred fifteen matched ICG and HCP ratings were analyzed. The ratings in all 6 QoDD dimensions were high; single items scored low. Mean absolute difference between both ratings was 0.33 (standard deviation [SD]: 3.08; median 0.05) on a 0 to 10 numerical rating scale and ranges between −8.24 (higher rating of ICGs compared to HCPs) and 9.33 (higher rating of HCPs compared to ICGs). Conclusions: The findings appear to show a high satisfaction with quality of dying and death as rated by ICGs and HCPs, but we suspect this might be indicative of a methodological challenge, that is, a ceiling effect in both assessments. Single low scoring items may provide important clues for improvement in end-of-life care. Although descriptive data show comparable mean values and standard deviations, the actual congruence of ratings is low. In summary, replacing one rating by another cannot be recommended.
    Type of Medium: Online Resource
    ISSN: 1049-9091 , 1938-2715
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2018
    detail.hit.zdb_id: 2236674-X
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  • 3
    Online Resource
    Online Resource
    SAGE Publications ; 2016
    In:  American Journal of Hospice and Palliative Medicine® Vol. 33, No. 8 ( 2016-09), p. 760-769
    In: American Journal of Hospice and Palliative Medicine®, SAGE Publications, Vol. 33, No. 8 ( 2016-09), p. 760-769
    Abstract: To validate the Quality of Dying and Death (QoDD) instrument for health professionals (QoDD-D-MA) and to test its feasibility in 2 German palliative care units (PCUs). Methods: The QoDD was translated from English to German and then retranslated following European Organisation for Research and Treatment of Cancer (EORTC) guidelines. Data were collected in 2 German PCUs to calculate aspects of validity and reliability. Results: Mean total score was 83.05 (range 49-100; N = 232). The QoDD-D-MA showed satisfactory psychometric properties, Cronbach α = .830; interrater reliability r = .245 ( P 〈 .01). The QoDD-D-MA was independent of patients’ demographic and clinical aspects. Some challenges occurred when applying the instrument. Conclusions: Feasibility could be improved by adapting the QoDD-D-MA to create a self-assessment version and finding a solution for items that result in many missing data. Future research should validate the QoDD-D-MA in other care settings.
    Type of Medium: Online Resource
    ISSN: 1049-9091 , 1938-2715
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2016
    detail.hit.zdb_id: 2236674-X
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  • 4
    Online Resource
    Online Resource
    Springer Science and Business Media LLC ; 2020
    In:  Supportive Care in Cancer Vol. 28, No. 9 ( 2020-09), p. 4527-4537
    In: Supportive Care in Cancer, Springer Science and Business Media LLC, Vol. 28, No. 9 ( 2020-09), p. 4527-4537
    Abstract: Providing high-quality care for the dying is essential in palliative care. Quality of care can be checked, compared, and improved by assessing responses from bereaved next-of-kin. The objectives of this study are to examine quality of care in the last 2 days of life of hospitalized patients considering specific aspects of their place of care. Methods The “Care of the Dying Evaluation” (CODE ™ ) questionnaire, validated in German in 2018 (CODE-GER), examines quality of care for the patient and support of next-of-kin, allocating values between 0 (low quality) and 4 (high quality). The total score (0–104) is divided into subscales which indicate support/time given by doctors/nurses, spiritual/emotional support, information/decision-making, environment, information about the dying process, symptoms, and support at the actual time of death/afterwards. Next-of-kin of patients with an expected death in specialized palliative care units and other wards in two university hospitals between April 2016 and March 2017 were included. Results Most of the 237 analyzed CODE-GER questionnaires were completed by the patient’s spouse (42.6%) or children (40.5%) and 64.1% were female. Patients stayed in hospital for an average of 13.7 days (3–276; SD 21.1). Half of the patients died in a specialized palliative care unit (50.6%). The CODE-GER total score was 85.7 (SD 14.17; 25–104). Subscales were rated significantly better for palliative care units than for other wards. Unsatisfying outcomes were reported in both groups in the subscales for information/decision-making and information about the dying process. Conclusion The overall quality of care for the dying was rated to be good. Improvements of information about the dying process and decision-making are needed. Trial registration DRKS00013916
    Type of Medium: Online Resource
    ISSN: 0941-4355 , 1433-7339
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2020
    detail.hit.zdb_id: 1463166-0
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  • 5
    In: BMC Palliative Care, Springer Science and Business Media LLC, Vol. 14, No. 1 ( 2015-12)
    Type of Medium: Online Resource
    ISSN: 1472-684X
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2015
    detail.hit.zdb_id: 2091556-1
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  • 6
    In: BMJ Supportive & Palliative Care, BMJ
    Abstract: Palliative care strives to improve quality of life for patients with incurable diseases. This approach includes adequate support of the patients’ loved ones. Consequently, loved ones have personal experiences of providing end-of-life care for their next. This is a resource for information and may help to investigate the loved ones’ perspectives on need for improvements. Aim To identify further quality aspects considered important by loved ones to improve the quality of care at the end of life as an addition to quantitative results from the Care of the Dying Evaluation for the German-speaking area (CODE-GER) questionnaire. Design Within the validation study of the questionnaire ‘Care of the Dying Evaluation’ (CODETM) GER, loved ones were asked to comment (free text) in parallel on each item of the CODE-GER. These free-text notes were analysed with the qualitative content analysis method by Philipp Mayring. Setting/participants Loved ones of patients (n=237), who had died an expected death in two university hospitals (palliative and non-palliative care units) during the period from April 2016 to March 2017. Results 993 relevant paragraphs were extracted out of 1261 free-text notes. For loved ones, important aspects of quality of care are information/communication, respect of the patient’s and/or loved one’s will, involvement in decision-making at the end of life (patient’s volition) and having the possibility to say goodbye. Conclusions It is important for loved ones to be taken seriously in their sorrows, to be informed, that the caregivers respect the patients’ will and to be emotionally supported. Trial registration number This study was registered at the German Clinical Trials Register (DRKS00013916).
    Type of Medium: Online Resource
    ISSN: 2045-435X , 2045-4368
    Language: English
    Publisher: BMJ
    Publication Date: 2020
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  • 7
    In: Health and Quality of Life Outcomes, Springer Science and Business Media LLC, Vol. 18, No. 1 ( 2020-12)
    Abstract: 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). Methods 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). Results 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. Conclusion 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. Trial registration This study was registered retrospectively on the 25th of January 2018 at the German Clinical Trials Register ( DRKS00013916 ).
    Type of Medium: Online Resource
    ISSN: 1477-7525
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2020
    detail.hit.zdb_id: 2098765-1
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  • 8
    In: Journal of Palliative Care, SAGE Publications, Vol. 32, No. 1 ( 2017-01), p. 34-39
    Abstract: In studies enrolling informal caregivers of patients in palliative care, it is necessary to ensure that findings are not influenced by factors such as mental disorders. Aim: This study aims to describe the influence of anxiety and depression on bereaved informal caregivers’ retrospective ratings of the quality of dying and death (QoDD) of their loved ones. Design: Informal caregivers of deceased patients from 2 German palliative care (PC) units took part in a validation study of the German version of the original QoDD-Deutsch-Angehörige (QoDD-D-Ang) during the fourth week following the patient’s death at the earliest. Depressive and panic disorders were assessed via the Patient Health Questionnaire (PHQ). Group comparisons (χ 2 , t test; significance level P 〈 .05) analyzed whether informal caregivers with depression or panic disorders and those without such disorders differ in their estimates. Results: A total of 226 informal caregivers participated between August 2012 and December 2013. The mean age of participants was 55.5 years; 61.1% were female. The PHQ of 221 participants resulted in 8.6% with major disorders, 13.6% with other depressive syndromes, and 77.8% without depressive disorders. In this secondary data analysis here, there was no difference between female and male participants concerning the incidence of depression ( P = .519, χ 2 ). Two participants screened positive for both panic and major depressive disorders. Both groups presented no significant differences in the mean total QoDD-D-Ang scores ( P = .343). Conclusion: Informal caregivers’ estimates on the QoDD-D-Ang of their significant others do not interfere with mental disorders. Therefore, bereaved informal caregivers are able to participate in the PC research after a few weeks following the loss of a loved one.
    Type of Medium: Online Resource
    ISSN: 0825-8597 , 2369-5293
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2017
    detail.hit.zdb_id: 2809167-X
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  • 9
    Online Resource
    Online Resource
    Elsevier BV ; 2015
    In:  Journal of Pain and Symptom Management Vol. 50, No. 3 ( 2015-09), p. 402-413
    In: Journal of Pain and Symptom Management, Elsevier BV, Vol. 50, No. 3 ( 2015-09), p. 402-413
    Type of Medium: Online Resource
    ISSN: 0885-3924
    Language: English
    Publisher: Elsevier BV
    Publication Date: 2015
    detail.hit.zdb_id: 1500639-6
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  • 10
    In: BMC Palliative Care, Springer Science and Business Media LLC, Vol. 14, No. 1 ( 2015-12)
    Type of Medium: Online Resource
    ISSN: 1472-684X
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2015
    detail.hit.zdb_id: 2091556-1
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