BACKGROUND: Evaluating 'quality of care for the dying' from the patients' perspective has practical and ethical difficulties: an alternative is to use bereaved relatives' views as 'proxy' measures. Currently, within the United Kingdom, there is no validated instrument which specifically examines quality of care in the last days of life or the impact of the Liverpool Care Pathway (LCP) for the Dying Patient. AIM: To develop and validate a questionnaire for use with bereaved relatives assessing the quality of care for patients and families in the last days of life and the immediate period after the bereavement. DESIGN: The instrument, 'Evaluating Care and Health Outcomes - for the Dying' (ECHO-D), was developed in four distinct phases: 1. Question formulation, 2. Expert panel review (n = 6), 3. Wider audience review (n = 25), 4. Pilot, including cognitive pre-testing interviews and preliminary test-retest reliability assessment with bereaved relatives (n = 80) SETTING: The study was conducted within a hospice and an acute hospital involving healthcare professionals, lay members and bereaved relatives. RESULTS: The systematic and robust process of questionnaire development generated evidence for ECHO-D's face and content validity. Response rate for the pilot stage with bereaved relatives, however, was comparatively low (23.4%). Test-retest analysis from the pilot showed moderate or good stability for 13 out of 17 key questions, although small sample numbers limited the interpretation. CONCLUSIONS: ECHO-D is the first instrument specifically to assess 'quality of care for the dying', focussing on the last days of life, and has direct links with the use of the LCP Programme.
BACKGROUND: Evaluating 'quality of care for the dying' from the patients' perspective has practical and ethical difficulties: an alternative is to use bereaved relatives' views as 'proxy' measures. Currently, within the United Kingdom, there is no validated instrument which specifically examines quality of care in the last days of life or the impact of the Liverpool Care Pathway (LCP) for the Dying Patient. AIM: To develop and validate a questionnaire for use with bereaved relatives assessing the quality of care for patients and families in the last days of life and the immediate period after the bereavement. DESIGN: The instrument, 'Evaluating Care and Health Outcomes - for the Dying' (ECHO-D), was developed in four distinct phases: 1. Question formulation, 2. Expert panel review (n = 6), 3. Wider audience review (n = 25), 4. Pilot, including cognitive pre-testing interviews and preliminary test-retest reliability assessment with bereaved relatives (n = 80) SETTING: The study was conducted within a hospice and an acute hospital involving healthcare professionals, lay members and bereaved relatives. RESULTS: The systematic and robust process of questionnaire development generated evidence for ECHO-D's face and content validity. Response rate for the pilot stage with bereaved relatives, however, was comparatively low (23.4%). Test-retest analysis from the pilot showed moderate or good stability for 13 out of 17 key questions, although small sample numbers limited the interpretation. CONCLUSIONS: ECHO-D is the first instrument specifically to assess 'quality of care for the dying', focussing on the last days of life, and has direct links with the use of the LCP Programme.
Authors: Catriona Rachel Mayland; Helen Mulholland; Maureen Gambles; John Ellershaw; Kevin Stewart Journal: BMJ Support Palliat Care Date: 2017-01-17 Impact factor: 3.568
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Authors: Dagny Faksvåg Haugen; Karl Ove Hufthammer; Christina Gerlach; Katrin Sigurdardottir; Marit Irene Tuen Hansen; Grace Ting; Vilma Adriana Tripodoro; Gabriel Goldraij; Eduardo Garcia Yanneo; Wojciech Leppert; Katarzyna Wolszczak; Lair Zambon; Juliana Nalin Passarini; Ivete Alonso Bredda Saad; Martin Weber; John Ellershaw; Catriona Rachel Mayland Journal: Oncologist Date: 2021-06-17
Authors: Frederika E Witkamp; Lia van Zuylen; Paul J van der Maas; Helma van Dijk; Carin C D van der Rijt; Agnes van der Heide Journal: BMC Health Serv Res Date: 2013-03-25 Impact factor: 2.655
Authors: Annika Vogt; Stephanie Stiel; Maria Heckel; Swantje Goebel; Sandra Stephanie Mai; Andreas Seifert; Christina Gerlach; Christoph Ostgathe; Martin Weber Journal: Health Qual Life Outcomes Date: 2020-09-22 Impact factor: 3.186