title: Validation of the German Version of the Quality of Dying and Death Questionnaire for Informal Caregivers (QODD-D-Ang).
abstract: BACKGROUND
  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.
  
  
  OBJECTIVE
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Palliative Medicine, Comprehensive Cancer Center CCC Erlangen-EMN, Universitätsklinikum Erlangen, Friedrich-Alexander-Universität (FAU) Erlangen-Nürnberg, Erlangen, Germany. Electronic address: maria.heckel@uk-erlangen.de.
authors.forename: Maria
authors.initials: M
authors.lastname: Heckel
authors.affiliation: Interdisciplinary Palliative Care Unit, III. Department of Medicine, University Medical Center of the Johannes Gutenberg University Mainz, Mainz, Germany.
authors.forename: Sonja
authors.initials: S
authors.lastname: Bussmann
authors.affiliation: Department of Palliative Medicine, Comprehensive Cancer Center CCC Erlangen-EMN, Universitätsklinikum Erlangen, Friedrich-Alexander-Universität (FAU) Erlangen-Nürnberg, Erlangen, Germany.
authors.forename: Stephanie
authors.initials: S
authors.lastname: Stiel
authors.affiliation: Interdisciplinary Palliative Care Unit, III. Department of Medicine, University Medical Center of the Johannes Gutenberg University Mainz, Mainz, Germany.
authors.forename: Martin
authors.initials: M
authors.lastname: Weber
authors.affiliation: Department of Palliative Medicine, Comprehensive Cancer Center CCC Erlangen-EMN, Universitätsklinikum Erlangen, Friedrich-Alexander-Universität (FAU) Erlangen-Nürnberg, Erlangen, Germany.
authors.forename: Christoph
authors.initials: C
authors.lastname: Ostgathe
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers; D003643:Death; D005260:Female; D005858:Germany; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000379:methods; D011594:Psychometrics; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires; D014177:Translations; D055815:Young Adult
keywords: Validation; assessment tool; informal caregivers; palliative care; psychometric properties; quality of dying and death; reliability; significant others; validity