Caring for Those Who Die at Home – The Use and Validation of ‘Care of the Dying Evaluation’ (Code) With Bereaved Relatives

Abstract

Background‘CODE’ is a 40-item self-completion post-bereavement questionnaire, focused on the last days of life and based on key components of best practice for care of the dying. CODE is a shortened, more user-friendly version of an original validated instrument, ‘Evaluating Care and Health Outcomes–for the Dying’ (ECHO-D).AimTo assess the validity and reliability of CODE by conducting: cognitive ‘think aloud’ interviews; test-retest analysis; and assessing internal consistency and construct validity of three key composite sub-scales–‘CARE’; ‘ENVIRONMENT’; and ‘COMMUNICATION’.MethodsA post-bereavement survey was conducted with 291 next-of-kin (NOK) to patients who died at home in Northwest England from advanced incurable illness. All NOK were invited to complete the CODE questionnaire and also asked if willing to undertake a cognitive interview and/or complete CODE for a second time a month later.Test-retest reliability was assessed using: percentage agreement; Kappa statistic and Spearman's correlation co-efficient. For each sub-scale, Cronbach's alpha and item-total correlations were used to assess internal consistency. Confirmatory factor analysis was used to assess construct validity.Results72 bereaved relatives (24.7% response rate) returned the completed CODE questionnaire, and 25 completed CODE for a second time. 15 cognitive interviews were undertaken. All interviewees found CODE sensitively worded and easy to understand. Minor revisions were suggested to provide additional clarity. Test-retest analysis showed all except two questions had moderate or good stability. Although the ENVIRONMENT scale was not perceived as relevant within the home setting, all three sub-scales scales showed good construct validity and internal consistency (Cronbach's alpha>0.79).Conclusions‘CODE’ represents a user-friendly, comprehensive outcome measure for care of the dying. This preliminary data, despite small numbers, builds on previous work with ECHO-D and provides support for CODE's validity and reliability. CODE could potentially be used to benchmark individual organisations and identify areas for improvement.

Quality assurance for care of the dying: engaging with clinical services to facilitate a regional cross-sectional survey of bereaved relatives’ views

“…Overall the response rate of returned and completed CODE ™ questionnaires (27%) was lower than expected (estimated to be 35–40%). It was also lower compared with previous studies of this nature including those which have used CODE™ [ 14 , 18 ]. One reason for the lower response rate was the decision at the project outset not to use reminder letters, a method recognised to increase response rates [ 23 ].…”

“…In view of these major changes in end-of-life healthcare policy, a quality assurance project was undertaken within a specific English region to assess current care provided to dying patients and their families in three healthcare settings: hospital, hospice, and community. In order to focus on care in the last days of life and immediate post-bereavement period, we used the ‘Care Of the Dying Evaluation’ (CODE™) questionnaire [ 14 ] as our post-bereavement tool. CODE™ seeks perceptions about quality of patient care and level of family support and contains sections on symptom control; nursing and medical care; communication; provision of fluids; place of death; and emotional and spiritual support.…”

“…It is a shortened version of the original questionnaire, ‘Evaluating Care and Health Outcomes – for the Dying (ECHO-D), which was developed, validated and used within a hospice and hospital setting [ 15 – 17 ]. CODE™ has also been assessed for validity and reliability [ 14 ], has been used nationally within the National Care of the Dying Audit – Hospitals [ 18 ], and is currently the focus of an international project involving seven European and Latin American counties [ 19 ].…”

Tools Measuring Quality of Death, Dying, and Care, Completed after Death: Systematic Review of Psychometric Properties

“…For tools where data grouping was not possible, the FATE (Family Assessment of Treatment at the End of life)-32 [ 29 ], FAMCARE (Family satisfaction with end-of-life Care)-5 and -10 [ 30 ], CODE (Caring Of the Dying Evaluation) [ 31 ], FPPFC (Family Perceptions of Physician-Family Caregiver Communication) [ 7 ], and MDS-Mood [ 7 ] were all assigned a positive rating for internal consistency ( α = 0.74–0.94) but with varying levels of evidence. For reliability, the Japanese versions of the CES (Care Evaluation Scale) and CES-10 [ 32 ] had moderate levels of evidence for positive test–retest reliability (ICC = 0.82–0.83).…”

Creating authentic video scenarios for use in prehospital research

“…Expert panels have been used across a range of health research disciplines to reach a consensus on a number of issues including the development of data collection tools [13]. Whilst expert panels are used widely within research, few papers specifically describe the recruitment and constitution of their panel.…”