Hostname: page-component-76fb5796d-5g6vh Total loading time: 0 Render date: 2024-04-26T15:53:45.668Z Has data issue: false hasContentIssue false
  • English
  • Français

Development and validation of the Terminal Delirium-Related Distress Scale to assess irreversible terminal delirium

Published online by Cambridge University Press:  05 January 2021

Megumi Uchida Open the ORCID record for Megumi Uchida [Opens in a new window] ,
Tatsuo Akechi ,
Tatsuya Morita ,
Yasuo Shima ,
Naoko Igarashi Open the ORCID record for Naoko Igarashi [Opens in a new window] ,
Mitsunori Miyashita  and
J-HOPE group
Megumi Uchida*
Affiliation:
Department of Psychiatry and Cognitive-Behavioral Medicine, Nagoya City University Graduate School of Medical Sciences, Nagoya, Japan Division of Palliative Care and Psycho-oncology, Nagoya City University Hospital, Nagoya, Japan
Tatsuo Akechi
Affiliation:
Department of Psychiatry and Cognitive-Behavioral Medicine, Nagoya City University Graduate School of Medical Sciences, Nagoya, Japan Division of Palliative Care and Psycho-oncology, Nagoya City University Hospital, Nagoya, Japan
Tatsuya Morita
Affiliation:
Department of Palliative and Supportive Care, Palliative Care Team and Seirei Hospice, Seirei Mikatahara General Hospital, Hamamatsu, Japan
Yasuo Shima
Affiliation:
Department of Palliative Medicine, Tsukuba Medical Center Hospital, Tsukuba, Japan
Naoko Igarashi
Affiliation:
Department of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine, Sendai, Japan
Mitsunori Miyashita
Affiliation:
Department of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine, Sendai, Japan
J-HOPE group
Affiliation:
Department of Psychiatry and Cognitive-Behavioral Medicine, Nagoya City University Graduate School of Medical Sciences, Nagoya, Japan
*
Author for correspondence: Megumi Uchida, Department of Psychiatry and Cognitive-Behavioral Medicine, Nagoya City University Graduate School of Medical Sciences, Mizuho-cho, Mizuho-ku, Nagoya, Aichi 467-8601, Japan. E-mail: ucmegumi@na.rim.or.jp
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective

There is no tool to appropriately assess terminal delirium, including the natural terminal course. The objective of this study was to develop an evaluation scale to assess distress from irreversible terminal delirium and to examine the validity of the scale.

Method

Based on previous qualitative analysis and systematic literature searches, we carried out a survey regarding the views of bereaved families and developed a questionnaire. We extracted items that bereaved families regarded as important and constructed an evaluation scale of terminal delirium. Then, we applied the questionnaire in a cross-sectional questionnaire survey of bereaved relatives of cancer patients who were admitted to a hospice or a palliative care unit.

Results

We developed the Terminal Delirium-Related Distress Scale (TDDS), a 24 item questionnaire consisting of five subscales (support for families and respect for a patient, ability to communicate, hallucinations and delusions, adequate information about the treatment of delirium, and agitation and restlessness). Two hundred and eighty-one bereaved relatives participated in the validation phase. The construct validity was shown to be good by repeated factor analysis. Convergent validity, confirmed by the correlation between the TDDS and the Care Evaluation Scale (r = 0.651, P < 0.001), was also good. The TDDS had good internal consistency (Cronbach's alpha coefficient for all 24 items = 0.84).

Significance of results

This study showed that the TDDS is a valid and feasible measure of irreversible terminal delirium.

Keywords

CancerDeliriumEnd of lifePalliative careTerminal delirium
Type
Original Article
Information
Palliative & Supportive Care , Volume 19 , Issue 3 , June 2021 , pp. 287 - 293
Check for updates
Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Breitbart, W and Strout, D (2000) Delirium in the terminally ill. Clin Geriatr Med 16(2), 357–372.CrossRefGoogle ScholarPubMed
Breitbart, W, Gibson, C and Tremblay, A (2002) The delirium experience: Delirium recall and delirium-related distress in hospitalized patients with cancer, their spouses/caregivers, and their nurses. Psychosomatics 43(3), 183–194.CrossRefGoogle ScholarPubMed
Bush, SH, Leonard, MM, Agar, M, et al. (2014) End-of-life delirium: Issues regarding recognition, optimal management, and the role of sedation in the dying phase. J Pain Symptom Manage 48(2), 215–230.10.1016/j.jpainsymman.2014.05.009CrossRefGoogle ScholarPubMed
Cohen, MZ, Pace, EA, Kaur, G, et al. (2009) Delirium in advanced cancer leading to distress in patients and family caregivers. J Palliat Care 25(3), 164–171.10.1177/082585970902500303CrossRefGoogle ScholarPubMed
de la Cruz, M, Ransing, V, Yennu, S, et al. (2015) The frequency, characteristics, and outcomes among cancer patients with delirium admitted to an acute palliative care unit. Oncologist 20(12), 1425–1431.CrossRefGoogle Scholar
Finucane, AM, Lugton, J, Kennedy, C, et al. (2017) The experiences of caregivers of patients with delirium, and their role in its management in palliative care settings: An integrative literature review. Psychooncology 26(3), 291–300.CrossRefGoogle Scholar
Goswami, R, Moore, J, Bruera, E, et al. (2020) Assessment of the decision-making capacity for clinical research participation in patients with advanced cancer in the last weeks of life. J Pain Symptom Manage 60(2), 400–406.CrossRefGoogle ScholarPubMed
Hosie, A, Davidson, PM, Agar, M, et al. (2013) Delirium prevalence, incidence, and implications for screening in specialist palliative care inpatient settings: A systematic review. Palliat Med 27(6), 486–498.10.1177/0269216312457214CrossRefGoogle ScholarPubMed
Hui, D (2018) Benzodiazepines for agitation in patients with delirium: Selecting the right patient, right time, and right indication. Curr Opin Support Palliat Care 12(4), 489–494.10.1097/SPC.0000000000000395CrossRefGoogle ScholarPubMed
Kerr, CW, Donnelly, JP, Wright, ST, et al. (2013) Progression of delirium in advanced illness: A multivariate model of caregiver and clinician perspectives. J Palliat Med 16(7), 768–773.CrossRefGoogle ScholarPubMed
Lawlor, PG and Bush, SH (2015) Delirium in patients with cancer: Assessment, impact, mechanisms and management. Nat Rev Clin Oncol 12(2), 77–92.10.1038/nrclinonc.2014.147CrossRefGoogle ScholarPubMed
Lawlor, PG, Gagnon, B, Mancini, IL, et al. (2000) Occurrence, causes, and outcome of delirium in patients with advanced cancer: A prospective study. Arch Intern Med 160(6), 786–794.CrossRefGoogle ScholarPubMed
Leonard, M, Raju, B, Conroy, M, et al. (2008) Reversibility of delirium in terminally ill patients and predictors of mortality. Palliat Med 22(7), 848–854.CrossRefGoogle ScholarPubMed
Maltoni, M, Scarpi, E, Rosati, M, et al. (2012) Palliative sedation in end-of-life care and survival: A systematic review. J Clin Oncol 30(12), 1378–1383.CrossRefGoogle ScholarPubMed
Miyashita, M, Morita, T, Sato, K, et al. (2008) Good Death Inventory: A measure for evaluating good death from the bereaved family member's perspective. J Pain Symptom Manage 35(5), 486–498.CrossRefGoogle ScholarPubMed
Miyashita, M, Aoyama, M, Nakahata, M, et al. (2017) Development the Care Evaluation Scale version 2.0: A modified version of a measure for bereaved family members to evaluate the structure and process of palliative care for cancer patient. BMC Palliat Care 16(1), 8.10.1186/s12904-017-0183-2CrossRefGoogle ScholarPubMed
Morita, T, Tei, Y, Tsunoda, J, et al. (2001) Underlying pathologies and their associations with clinical features in terminal delirium of cancer patients. J Pain Symptom Manage 22(6), 997–1006.CrossRefGoogle ScholarPubMed
Morita, T, Hirai, K, Sakaguchi, Y, et al. (2004) Measuring the quality of structure and process in end-of-life care from the bereaved family perspective. J Pain Symptom Manage 27(6), 492–501.CrossRefGoogle ScholarPubMed
Parra Palacio, S, Giraldo Hoyos, CE, Arias Rodriguez, C, et al. (2018) Palliative sedation in advanced cancer patients hospitalized in a specialized palliative care unit. Support Care Cancer 26(9), 3173–3180.CrossRefGoogle Scholar
Partridge, JS, Martin, FC, Harari, D, et al. (2013) The delirium experience: What is the effect on patients, relatives and staff and what can be done to modify this? Int J Geriatr Psychiatry 28(8), 804–812.10.1002/gps.3900CrossRefGoogle Scholar
Raus, K, Sterckx, S and Mortier, F (2012) Continuous deep sedation at the end of life and the ‘natural death’ hypothesis. Bioethics 26(6), 329–336.CrossRefGoogle Scholar
Sweet, L, Adamis, D, Meagher, DJ, et al. (2014) Ethical challenges and solutions regarding delirium studies in palliative care. J Pain Symptom Manage 48(2), 259–271.CrossRefGoogle ScholarPubMed
Uchida, M, Morita, T, Ito, Y, et al. (2019) Goals of care and treatment in terminal delirium: A qualitative study of the views and experiences of healthcare professionals caring for patients with cancer. Palliat Support Care 17(4), 403–408.CrossRefGoogle ScholarPubMed