Skip to main content
Top
Gepubliceerd in:

28-11-2022 | Review

A systematic review of instruments measuring the quality of dying and death in Asian countries

Auteurs: Shuo Xu, Yue Fang, Hanzhang Chen, Kang Sun, Chen Zhang, Yang Liu

Gepubliceerd in: Quality of Life Research | Uitgave 7/2023

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

Abstract

Purpose

This study aimed to systematically identify, appraise, and summarize the psychometric properties of instruments used to measure the quality of dying and death in Asian countries.

Methods

The Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) was closely followed. The literature was searched using the following keywords and their synonyms: “death and dying,” “measurement,” and “Asian country” in CINAHL, PubMed, PsycInfo, Web of Science, and Cochrane Library from inception to April 2021. Two reviewers independently screened titles and abstracts and reviewed the full text. Two other reviewers independently assessed the quality of the identified studies in three steps: methodological quality evaluation, good measurement properties evaluation, and quality of evidence evaluation.

Results

This review retrieved 37,195 studies, of which seven were finally included. Four instruments that assessed the quality of dying and death in Asian countries were identified: the Good Death Inventory (GDI), the Good Death Scale (GDS), and two versions of the Quality of Dying and Death (QODD) Questionnaires. All included studies failed to evaluate all the recommended psychometric properties, and none of the instruments provided strong evidence of their quality among Asian populations. Overall, the grade of evidence quality for the GDI was moderate, the highest among all identified instruments.

Conclusion

The GDI is by far the most reliable instrument for assessing the quality of dying and death in Asian populations. A lack of validation studies in Asian and Western cultures, however, warrants caution when drawing conclusions from the GDI.
Bijlagen
Alleen toegankelijk voor geautoriseerde gebruikers
Literatuur
1.
go back to reference Singer, P. A., & Bowman, K. W. (2002). Quality end-of-life care: A global perspective. BMC Palliative care, 1(1), 1–10.CrossRef Singer, P. A., & Bowman, K. W. (2002). Quality end-of-life care: A global perspective. BMC Palliative care, 1(1), 1–10.CrossRef
2.
go back to reference Bear, L., Simpson, N., Angland, M., Bhogal, J. K., Bowers, R., Cannell, F., Gardner, K., Lohiya, A. G., James, D., Jivraj, N., Koch, I., Laws, M., Lipton, Lipton, J., Long, N. J., Vieira, J., Watt, C., Whittle, C., & Zidaru-Barbulescu, T. (2020). ‘A good death’ during the Covid-19 pandemic in the UK: a report on key findings and recommendations. http://eprints.lse.ac.uk/id/eprint/104143 Bear, L., Simpson, N., Angland, M., Bhogal, J. K., Bowers, R., Cannell, F., Gardner, K., Lohiya, A. G., James, D., Jivraj, N., Koch, I., Laws, M., Lipton, Lipton, J., Long, N. J., Vieira, J., Watt, C., Whittle, C., & Zidaru-Barbulescu, T. (2020). ‘A good death’ during the Covid-19 pandemic in the UK: a report on key findings and recommendations. http://​eprints.​lse.​ac.​uk/​id/​eprint/​104143
3.
go back to reference Becqué, Y. N., van der Geugten, W., Van der Heide, A., Korfage, I. J., Pasman, H. R. W., Onwuteaka-Philipsen, B. D., Zee, M., Witkamp, E., & Goossensen, A. (2022). Dignity reflections based on experiences of end-of-life care during the first wave of the COVID-19 pandemic: A qualitative inquiry among bereaved relatives in the Netherlands (the CO-LIVE study). Scandinavian Journal of Caring Sciences, 36(3), 769–781.CrossRefPubMed Becqué, Y. N., van der Geugten, W., Van der Heide, A., Korfage, I. J., Pasman, H. R. W., Onwuteaka-Philipsen, B. D., Zee, M., Witkamp, E., & Goossensen, A. (2022). Dignity reflections based on experiences of end-of-life care during the first wave of the COVID-19 pandemic: A qualitative inquiry among bereaved relatives in the Netherlands (the CO-LIVE study). Scandinavian Journal of Caring Sciences, 36(3), 769–781.CrossRefPubMed
4.
go back to reference Carr, D. (2003). A “good death” for whom? Quality of spouse’s death and psychological distress among older widowed persons. Journal of Health and Social Behavior, 44(2), 215–232.CrossRefPubMed Carr, D. (2003). A “good death” for whom? Quality of spouse’s death and psychological distress among older widowed persons. Journal of Health and Social Behavior, 44(2), 215–232.CrossRefPubMed
5.
6.
go back to reference Wang, S. S., Teo, W. Z., Yee, C. W., & Chai, Y. W. (2020). Pursuing a good death in the time of COVID-19. Journal of Palliative Medicine, 23(6), 754–755.CrossRefPubMed Wang, S. S., Teo, W. Z., Yee, C. W., & Chai, Y. W. (2020). Pursuing a good death in the time of COVID-19. Journal of Palliative Medicine, 23(6), 754–755.CrossRefPubMed
8.
go back to reference Stewart, A. L., Teno, J., Patrick, D. L., & Lynn, J. (1999). The concept of quality of life of dying persons in the context of health care. Journal of pain and symptom management, 17(2), 93–108.CrossRefPubMed Stewart, A. L., Teno, J., Patrick, D. L., & Lynn, J. (1999). The concept of quality of life of dying persons in the context of health care. Journal of pain and symptom management, 17(2), 93–108.CrossRefPubMed
9.
go back to reference Hales, S., Zimmermann, C., & Rodin, G. (2008). The quality of dying and death. Archives of internal medicine, 168(9), 912–918.CrossRefPubMed Hales, S., Zimmermann, C., & Rodin, G. (2008). The quality of dying and death. Archives of internal medicine, 168(9), 912–918.CrossRefPubMed
10.
11.
go back to reference Miyashita, M., Sanjo, M., Morita, T., Hirai, K., & Uchitomi, Y. (2007). Good death in cancer care: A nationwide quantitative study. Annals of Oncology, 18(6), 1090–1097.CrossRefPubMed Miyashita, M., Sanjo, M., Morita, T., Hirai, K., & Uchitomi, Y. (2007). Good death in cancer care: A nationwide quantitative study. Annals of Oncology, 18(6), 1090–1097.CrossRefPubMed
14.
go back to reference Mokkink, L. B., Terwee, C. B., Knol, D. L., Stratford, P. W., Alonso, J., Patrick, D. L., Bouter, L. M., & De Vet, H. C. (2010). The COSMIN checklist for evaluating the methodological quality of studies on measurement properties: a clarification of its content. BMC medical research methodology, 10(1), 1–8.CrossRef Mokkink, L. B., Terwee, C. B., Knol, D. L., Stratford, P. W., Alonso, J., Patrick, D. L., Bouter, L. M., & De Vet, H. C. (2010). The COSMIN checklist for evaluating the methodological quality of studies on measurement properties: a clarification of its content. BMC medical research methodology, 10(1), 1–8.CrossRef
16.
go back to reference Cheng, S. Y., Hu, W. Y., Liu, W. J., Yao, C. A., Chen, C. Y., & Chiu, T. Y. (2008). Good death study of elderly patients with terminal cancer in Taiwan. Palliative medicine, 22(5), 626–632.CrossRefPubMed Cheng, S. Y., Hu, W. Y., Liu, W. J., Yao, C. A., Chen, C. Y., & Chiu, T. Y. (2008). Good death study of elderly patients with terminal cancer in Taiwan. Palliative medicine, 22(5), 626–632.CrossRefPubMed
17.
go back to reference Cho, J. Y., Lee, J., Lee, S. M., Park, J. H., Kim, J., Kim, Y., Lee, S. H., Park, J. S., Cho, Y. J., Yoon, H. I., & Lee, J. H. (2018). Transcultural adaptation and validation of quality of dying and death questionnaire in medical intensive care units in South Korea. Acute and critical care, 33(2), 95.CrossRefPubMedPubMedCentral Cho, J. Y., Lee, J., Lee, S. M., Park, J. H., Kim, J., Kim, Y., Lee, S. H., Park, J. S., Cho, Y. J., Yoon, H. I., & Lee, J. H. (2018). Transcultural adaptation and validation of quality of dying and death questionnaire in medical intensive care units in South Korea. Acute and critical care, 33(2), 95.CrossRefPubMedPubMedCentral
18.
go back to reference Han, X. P., Mei, X., Zhang, J., Zhang, T. T., Yin, A. N., Qiu, F., & Liu, M. J. (2021). Validation of the Chinese version of the quality of dying and death questionnaire for family members of ICU patients. Journal of Pain and Symptom Management, 62(3), 599–608.CrossRefPubMed Han, X. P., Mei, X., Zhang, J., Zhang, T. T., Yin, A. N., Qiu, F., & Liu, M. J. (2021). Validation of the Chinese version of the quality of dying and death questionnaire for family members of ICU patients. Journal of Pain and Symptom Management, 62(3), 599–608.CrossRefPubMed
19.
go back to reference Miyashita, M., Morita, T., Sato, K., Hirai, K., Shima, Y., & Uchitomi, Y. (2008). Good death inventory: A measure for evaluating good death from the bereaved family member’s perspective. Journal of pain and symptom management, 35(5), 486–498.CrossRefPubMed Miyashita, M., Morita, T., Sato, K., Hirai, K., Shima, Y., & Uchitomi, Y. (2008). Good death inventory: A measure for evaluating good death from the bereaved family member’s perspective. Journal of pain and symptom management, 35(5), 486–498.CrossRefPubMed
20.
go back to reference Shin, D. W., Choi, J., Miyashita, M., Choi, J. Y., Kang, J., Baik, Y. J., Mo, H. N., Choi, J. S., Son, Y. S., & Lee, H. S. (2011). Measuring comprehensive outcomes in palliative care: validation of the Korean version of the Good Death Inventory. Journal of pain and symptom management, 42(4), 632–642.CrossRefPubMed Shin, D. W., Choi, J., Miyashita, M., Choi, J. Y., Kang, J., Baik, Y. J., Mo, H. N., Choi, J. S., Son, Y. S., & Lee, H. S. (2011). Measuring comprehensive outcomes in palliative care: validation of the Korean version of the Good Death Inventory. Journal of pain and symptom management, 42(4), 632–642.CrossRefPubMed
21.
go back to reference Yao, C. A., Hu, W. Y., Lai, Y. F., Cheng, S. Y., Chen, C. Y., & Chiu, T. Y. (2007). Does dying at home influence the good death of terminal cancer patients? Journal of pain and symptom management, 34(5), 497–504.CrossRefPubMed Yao, C. A., Hu, W. Y., Lai, Y. F., Cheng, S. Y., Chen, C. Y., & Chiu, T. Y. (2007). Does dying at home influence the good death of terminal cancer patients? Journal of pain and symptom management, 34(5), 497–504.CrossRefPubMed
22.
go back to reference Zhao, J., Wong, F. K. Y., You, L., & Tao, H. (2019). Validation of the Chinese version of the good death inventory for evaluating end-of-life care from the perspective of the bereaved family. Journal of pain and symptom management, 58(3), 472–480.CrossRefPubMed Zhao, J., Wong, F. K. Y., You, L., & Tao, H. (2019). Validation of the Chinese version of the good death inventory for evaluating end-of-life care from the perspective of the bereaved family. Journal of pain and symptom management, 58(3), 472–480.CrossRefPubMed
23.
go back to reference Weisman, A. D. (1988). Appropriate death and the hospice program. The Hospice Journal, 4(1), 65–77.CrossRefPubMed Weisman, A. D. (1988). Appropriate death and the hospice program. The Hospice Journal, 4(1), 65–77.CrossRefPubMed
25.
go back to reference Curtis, J. R., Patrick, D. L., Caldwell, E., et al. (1999). The quality of patient-doctor communication about endof-life care: A study of patients with advanced AIDS and their primary care clinicians. AIDS, 13, 1123–1131.CrossRefPubMed Curtis, J. R., Patrick, D. L., Caldwell, E., et al. (1999). The quality of patient-doctor communication about endof-life care: A study of patients with advanced AIDS and their primary care clinicians. AIDS, 13, 1123–1131.CrossRefPubMed
26.
go back to reference Curtis, J. R., Patrick, D. L., Caldwell, E., et al. (2010). Why don’t patients with AIDS and their clinicians talk about end-of-life care? Barriers to communication for patients with AIDS and their primary care clinicians. Archives of Internal Medicine, 160(11), 1690–1696.CrossRef Curtis, J. R., Patrick, D. L., Caldwell, E., et al. (2010). Why don’t patients with AIDS and their clinicians talk about end-of-life care? Barriers to communication for patients with AIDS and their primary care clinicians. Archives of Internal Medicine, 160(11), 1690–1696.CrossRef
27.
go back to reference Curtis, J. R., Patrick, D. L., Engelberg, R. A., et al. (2002). A measure of the quality of dying and death: Initial validation using after-death interviews with family members [J]. Journal of Pain and Symptom Management, 24, 17e31.CrossRef Curtis, J. R., Patrick, D. L., Engelberg, R. A., et al. (2002). A measure of the quality of dying and death: Initial validation using after-death interviews with family members [J]. Journal of Pain and Symptom Management, 24, 17e31.CrossRef
28.
go back to reference Kentish-Barnes, N., Seegers, V., Legriel, S., et al. (2016). CAESAR: a new tool to assess relatives’ experience of dying and death in the ICU[J]. Intensive Care Medicine, 42, 995e1002.CrossRef Kentish-Barnes, N., Seegers, V., Legriel, S., et al. (2016). CAESAR: a new tool to assess relatives’ experience of dying and death in the ICU[J]. Intensive Care Medicine, 42, 995e1002.CrossRef
29.
go back to reference Glavan, B. J., Engelberg, R. A., Downey, L., et al. (2008). Using the medical record to evaluate the quality of end-of-life care in the intensive care unit[J]. Critical Care Medicine, 36, 1138e1146.CrossRef Glavan, B. J., Engelberg, R. A., Downey, L., et al. (2008). Using the medical record to evaluate the quality of end-of-life care in the intensive care unit[J]. Critical Care Medicine, 36, 1138e1146.CrossRef
30.
go back to reference Kupeli, N., Candy, B., Tamura-Rose, G., Schofield, G., Webber, N., Hicks, S. E., Floyd, T., Vivat, B., Sampson, E. L., Stone, P., & Aspden, T. (2019). Tools measuring quality of death, dying, and care, completed after death: systematic review of psychometric properties. The Patient-Patient-Centered Outcomes Research, 12(2), 183–197.CrossRefPubMed Kupeli, N., Candy, B., Tamura-Rose, G., Schofield, G., Webber, N., Hicks, S. E., Floyd, T., Vivat, B., Sampson, E. L., Stone, P., & Aspden, T. (2019). Tools measuring quality of death, dying, and care, completed after death: systematic review of psychometric properties. The Patient-Patient-Centered Outcomes Research, 12(2), 183–197.CrossRefPubMed
32.
go back to reference Beaver, K., Luker, K., & Woods, S. (1999). Conducting research with the terminally ill: Challenges and considerations. International Journal of Palliative Nursing, 5(1), 13–17.CrossRef Beaver, K., Luker, K., & Woods, S. (1999). Conducting research with the terminally ill: Challenges and considerations. International Journal of Palliative Nursing, 5(1), 13–17.CrossRef
33.
go back to reference Janssens, R., & Gordijn, B. (2000). Clinical trails in palliative care: An ethical evaluation. Patient Education and Counselling, 41, 55–62.CrossRef Janssens, R., & Gordijn, B. (2000). Clinical trails in palliative care: An ethical evaluation. Patient Education and Counselling, 41, 55–62.CrossRef
34.
go back to reference Karlawish, J. H. (2003). Conducting research that involves subjects at the end of life who are unable to give consent. Journal of pain and symptom management, 25(4), S14–S24.CrossRefPubMed Karlawish, J. H. (2003). Conducting research that involves subjects at the end of life who are unable to give consent. Journal of pain and symptom management, 25(4), S14–S24.CrossRefPubMed
35.
go back to reference Addington-Hall, J. M., & McPherson, C. (2001). After-death interviews with surrogates/bereaved family members: Some issues of validity. Journal of Pain and Symptom Management, 22, 794–790.CrossRef Addington-Hall, J. M., & McPherson, C. (2001). After-death interviews with surrogates/bereaved family members: Some issues of validity. Journal of Pain and Symptom Management, 22, 794–790.CrossRef
Metagegevens
Titel
A systematic review of instruments measuring the quality of dying and death in Asian countries
Auteurs
Shuo Xu
Yue Fang
Hanzhang Chen
Kang Sun
Chen Zhang
Yang Liu
Publicatiedatum
28-11-2022
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 7/2023
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-022-03307-8