Validation of the German Version of the Quality of Dying and Death Questionnaire for Informal Caregivers (QODD-D-Ang).

CONTEXT: The quality of dying and death (QOD) influences end-of-life care for patients and their relatives. To the best of our knowledge, there are currently no validated standard instruments for evaluating the QOD of patients in palliative care units (PCUs) in Germany.

OBJECTIVES: This study aimed to validate the German version of the multidimensional questionnaire "Quality of Dying and Death" for informal caregivers (QODD-Deutsch-Angehörige [QODD-D-Ang]) and provide a detailed report on its validity and reliability.

METHODS: The QODD was forward/backward translated following the European Organization for Research and Treatment of Cancer guidelines. Data collected in two German palliative care units (N = 226) with the QODD-D-Ang were used to calculate the QODD-D-Ang total score (TS) and to define reliability and validity, as well as acceptance and burden for informal caregivers. Frequencies, means, and SDs of various patient data related to care and disease were calculated to describe the study population and to look at group differences.

RESULTS: The mean TS of 175 participants was 75.72 (range 38-99; minimum 0 to maximum 100; higher scores indicate better QOD). The QODD-D-Ang showed good internal consistency for 27 items (Cronbach's alpha 0.852). Factors extracted by factor analysis could not be usefully interpreted. The TS of the QODD-D-Ang correlated substantially with the Palliative care Outcome Scale (r = 0.540), indicating good convergent validity. The QODD-D-Ang TS was stable for various demographic and clinical dimensions except for the amount of days on which informal caregivers visited patients, and, therefore, provided good discriminant validity.

CONCLUSION: Analyses of validity and reliability of the QODD-D-Ang showed satisfactory to good psychometric properties, meaning that the QODD can be recommended for standard implementation in German hospices and palliative care institutions to measure the QOD. Feasibility could be improved by adapting the instrument so that it may be administered with minimal demands on staff. When interpreting the results, it should be kept in mind that the QODD-D-Ang does not measure quality of care but the quality of the dying process as estimated by bereaved relatives.