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Quality of Life Research

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

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.

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Singer, P. A., & Bowman, K. W. (2002). Quality end-of-life care: A global perspective. BMC Palliative care, 1(1), 1–10.CrossRef

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

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

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

Ellershaw, J., Dewar, S., & Murphy, D. (2010). Achieving a good death for all. BMJ, 341, c4861.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

Lois Downey, J., Curtis, R., Lafferty, W. E., Herting, J. R., & Ruth, A. (2010). Engelberg, The Quality of Dying and Death Questionnaire (QODD): Empirical domains and theoretical perspectives. Journal of Pain and Symptom Management, 39(1), 9–22. https://doi.org/10.1016/j.jpainsymman.2009.05.012CrossRefPubMed

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

Hales, S., Zimmermann, C., & Rodin, G. (2008). The quality of dying and death. Archives of internal medicine, 168(9), 912–918.CrossRefPubMed

10.

Huang, Q. S. (2015). A review on problems of China’s hospice care and analysis of possible solutions. Chinese medical journal, 128(02), 279–281.CrossRefPubMedPubMedCentral

11.

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

12.

Gutierrez Sanchez, D., Perez Cruzado, D., & Cuesta-Vargas, A. I. (2018). The quality of dying and death measurement instruments: A systematic psychometric review. Journal of advanced nursing, 74(8), 1803–1818. https://doi.org/10.1111/jan.13687CrossRef

13.

Mokkink, L. B., de Vet, H. C. W., Prinsen, C. A. C., Patrick, D. L., Alonso, J., Bouter, L. M., & Terwee, C. B. (2018). COSMIN risk of bias checklist for systematic reviews of patient-reported outcome measures. Quality of Life Research, 27(5), 1171–1179. https://doi.org/10.1007/s11136-017-1765-4CrossRefPubMed

14.

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

15.

Terwee, C. B., Prinsen, C. A. C., Chiarotto, A., de Vel, H. C. W., Bouter, L. M., Alonso, J., Westerman, M. J., Patrick, D. L., Mokkink, L. B. (2018). COSMIN methodology for assessing the content validity of PROMs. User Manual Version 1. Retrieved November, 2022, from https://www.cosmin.nl/wp-content/uploads/COSMIN-methodology-for-content-validity-usermanual-v1.pdf

16.

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.

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.

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.

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.

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.

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.

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.

Weisman, A. D. (1988). Appropriate death and the hospice program. The Hospice Journal, 4(1), 65–77.CrossRefPubMed

24.

Patrick, D. L., Engelberg, R. A., & Curtis, J. R. (2001). Evaluating the quality of dying and death. Journal of pain and symptom management, 22(3), 717–726. https://doi.org/10.1016/S0885-3924(01)00333-5CrossRefPubMed

25.

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.

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.

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.

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.

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.

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

31.

Addington-Hall, J. (2002). Research sensitivities to palliative care patients. European Journal of Cancer Care, 11(3), 220–224. https://doi.org/10.1046/j.1365-2354.2002.00343.xCrossRefPubMed

32.

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.

Janssens, R., & Gordijn, B. (2000). Clinical trails in palliative care: An ethical evaluation. Patient Education and Counselling, 41, 55–62.CrossRef

34.

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.

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

36.

Teno, J. M. (2005). Measuring end-of-life care outcomes retrospectively. Journal of Palliative Medicine, 8(supplement 1), s-42-s−49. https://doi.org/10.1089/jpm.2005.8.s-42CrossRef

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

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Abstract

Purpose

Methods

Results

Conclusion

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