The Difficulties in End-of-Life Discussions - Family Inventory (DEOLD-FI): Development and Initial Validation of a Self-Report Questionnaire in a Sample of Terminal Cancer Patients

Liv Betker; Katharina Nagelschmidt; Nico Leppin; Jorge Riera Knorrenschild; Christian Volberg; Daniel Berthold; Ulf Sibelius; Winfried Rief; Antonia Barke; Pia von Blanckenburg; Carola Seifart

doi:10.1016/j.jpainsymman.2021.04.022

The Difficulties in End-of-Life Discussions - Family Inventory (DEOLD-FI): Development and Initial Validation of a Self-Report Questionnaire in a Sample of Terminal Cancer Patients

J Pain Symptom Manage. 2021 Sep;62(3):e130-e138. doi: 10.1016/j.jpainsymman.2021.04.022. Epub 2021 Apr 30.

Affiliations

¹ Department of Clinical Psychology and Psychotherapy (L.B., K.N., N.L., W.R., P.V.B.), Philipps-University Marburg, Marburg, Germany. Electronic address: liv.betker@uni-marburg.de.
² Department of Clinical Psychology and Psychotherapy (L.B., K.N., N.L., W.R., P.V.B.), Philipps-University Marburg, Marburg, Germany.
³ Department of Internal Medicine, Division Haematology and Oncology (R.K.), University Hospital of Giessen and Marburg, Marburg Site, Germany.
⁴ Faculty of Medicine, Deans Office, Research Group Medical Ethics (C.V., C.S.), Philipps-University Marburg, Marburg, Germany.
⁵ Department of Clinical Oncology and Palliative Care (D.B., U.S.), University Hospital of Giessen and Marburg, Giessen Site, Germany.
⁶ Department of Psychology (A.B.), Catholic University Eichstaett-Ingolstadt, Eichstaett, Germany.

PMID: 33933622
DOI: 10.1016/j.jpainsymman.2021.04.022

Abstract

Context: Open end-of-life communication is especially important within the patient-family unit of care and can positively affect their medical, psychological, and relational outcomes. Nevertheless, end-of-life discussions are often perceived as difficult and avoided.

Objectives: To develop and validate the Difficulties in End-of-Life Discussions - Family Inventory (DEOLD-FI) to allow a systematic assessment of reasons why people shy away from end-of-life discussions.

Methods: Patients with advanced cancer were recruited and completed the DEOLD-FI and measures of avoidance of cancer communication, quality of life and distress, and the experienced difficulty as well as the occurrence of end-of-life discussions. Standard item analyses and an exploratory factor analysis were conducted. Construct validity was analysed through associations between the DEOLD-FI and the aforementioned measures.

Results: Questionnaires were obtained from 112 participants (53% response rate; male 54%, mean age 64.9 years [range 33-94]). In the final 23-item version two factors were extracted: 'emotional burden due to end-of-life discussions' (α = 0.90) and "negative attitudes towards end-of-life discussions" (α = 0.91) explaining 69% of the variance (total scale α = 0.93). Construct validity was supported by its significant correlations with the reported difficulty in end-of-life discussions (r = 0.42) and avoidance of cancer communication (r = 0.40 to r = 0.46) and insignificant correlations with quality of life (r = -0.11), distress (r = 0.16), and physical well-being (r = 0.02). Those who had already engaged in end-of-life discussions showed significantly fewer communication barriers.

Conclusion: Results provide evidence that the DEOLD-FI is a valid and reliable instrument for the assessment of difficulties in end-of-life discussions. Benefits for clinical practice and research are discussed.

Keywords: End-of-life, communication difficulties, questionnaire, advanced cancer, palliative care; advance care planning.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adult
Aged
Aged, 80 and over
Death
Humans
Male
Middle Aged
Neoplasms* / therapy
Quality of Life
Self Report
Surveys and Questionnaires
Terminal Care*