Japanese Scale Captures Death Distress in Advanced Cancer Patients

Death-related distress is one of the most common yet least measured burdens faced by people living with advanced cancer, and in Japan there has until now been no validated self-report tool to capture it. A multicenter cross-sectional study published in BioPsychoSocial Medicine reports the first validation of a Japanese version of the Death and Dying Distress Scale (DADDS-J), a questionnaire originally developed by Canadian researchers to assess distress connected with dying and death in patients with advanced cancer. The study, led by Seraki Miyamoto and Tadahiro Yamazaki of the University of Tokyo with collaborators at several Japanese institutions and the original scale’s developers at the Princess Margaret Cancer Centre, found that the translated instrument performs well psychometrically, but with a factor structure that differs from the original in ways the authors attribute to cultural attitudes toward death.

The original DADDS is a 15-item self-administered questionnaire in which each item is rated on a six-point Likert scale, from having not experienced a thought or concern at all to having experienced extreme distress. In its validated English form, it yielded data from 386 patients with advanced cancer and showed a two-factor structure: “Finitude,” covering distress about the shortness of time left, and “Dying,” covering distress about the process of dying itself. Both factors showed good internal consistency in the original work, with Cronbach’s alpha values between 0.861 and 0.949, and construct validity was demonstrated through a positive correlation with demoralization and a negative correlation with preparation for the end of life. The scale has since been translated and validated in German, Chinese, Spanish, and Italian, and has been used to assess the effectiveness of psychotherapeutic interventions in patients with advanced cancer.

The Japanese team followed the World Health Organization translation methodology and worked with the original developers to refine the translation. The Japanese version was back-translated into English by a professional bilingual editor to ensure conceptual equivalence, and the original developers largely confirmed the accuracy of the back-translation, requiring only minor corrections, limited to changing a Japanese particle in item 4, “Not knowing what happens near the end of life.” This careful process matters because the authors argue that measuring death-related distress in Japan poses particular challenges: dying without knowing that one is dying is still often considered a virtue there, the topic of death is frequently avoided even in the terminal stages of cancer, and the importance of preparing for death remains inadequately recognized.

For the validation study, the researchers recruited 200 Japanese participants with advanced cancer between April 2020 and December 2022 from four clinical sites: The University of Tokyo Hospital, the Cancer Institute Hospital of the Japanese Foundation for Cancer Research, and the Palliative Care Center of Yamaguchi University Hospital. Participants had to be at least 18 years old, fluent in Japanese, able to provide written informed consent, and diagnosed with an advanced solid tumor with or without distant metastases, including recurrent stage III or IV lung or ovarian cancer, pancreatic cancer of any stage, and various stage IV cancers. Exclusion criteria covered difficulty communicating with healthcare providers, cognitive impairment, and severe physical or speech impairment. The final sample had a mean age of 63.5 years with a standard deviation of 12.5, and gastrointestinal, pulmonary, and oropharyngeal tumors accounted for 79.5 percent of primary diagnoses. Most participants were married, lived with their families, and had a high school education or higher.

Alongside the DADDS-J, participants completed validated Japanese versions of several comparison instruments: the Patient Health Questionnaire-9 for depression, the Generalized Anxiety Disorder-7 for anxiety, the Functional Assessment of Cancer Therapy-General for quality of life, the Japanese version of the Quality of Life at the End of Life-Cancer Scale for both quality of life and symptom burden, and the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being for spirituality. The researchers split the sample randomly into two subsamples so that exploratory and confirmatory factor analyses could be performed on separate data, an approach recommended by the COSMIN guidelines, with the sample size set at seven times the number of items and at least 100 participants.

The exploratory factor analysis revealed a surprise. In the first analysis of all 15 items, item 3, “Not having achieved my life goals and ambitions,” showed cross-loadings, with a principal factor loading of 0.605 and a secondary loading of 0.419, and because the difference between the two loadings fell below the required threshold, the item was excluded. A second analysis of the remaining 14 items, conducted with generalized least squares estimation and promax rotation after tests showed the data were not normally distributed, identified three factors accounting for 73.39 percent of the total variance. Parallel analysis based on 50 randomly permuted datasets supported a maximum of three factors. The original “Finitude” factor had split in two: items 4 through 10 retained the “Finitude” label for distress about the shortness of time, while items 1 and 2 formed a new factor the authors named “Incompleteness,” representing distress about things left undone and words left unsaid. The “Dying” factor, items 11 through 15, remained intact.

Confirmatory factor analysis on the independent subsample of 100 participants showed an acceptable fit for this three-factor structure, with a comparative fit index of 0.959, a Tucker-Lewis index of 0.943, a root mean square error of approximation of 0.090, and a standardized root mean square residual of 0.038. Model respecification based on modification indices added three residual covariances between item pairs within factors. Internal consistency was strong: Cronbach’s alpha reached 0.92 for “Finitude,” 0.91 for “Dying,” and 0.85 for “Incompleteness,” with McDonald’s omega of 0.92 and 0.91 for the first two subscales; a value for “Incompleteness” could not be estimated because it contains fewer than three items.

The construct validity correlations followed expected patterns. “Finitude” showed strong positive correlations with depression and anxiety scores and strong negative correlations with the “Preparation for End of Life” and “Emotional well-being” subscales of the comparison measures, along with moderate negative correlations with symptom control, physical and functional well-being, and the meaning/peace and faith components of spiritual well-being. “Dying” correlated strongly positively with anxiety and strongly negatively with emotional well-being, while “Incompleteness” showed moderate correlations in the same directions. Each subscale was also significantly correlated with age, with “Finitude” and “Incompleteness” showing weak negative correlations, meaning older patients reported somewhat less distress on those dimensions. Notably, none of the subscales correlated significantly with the social and family well-being subscale or with time since cancer diagnosis, echoing findings from previous validations of the scale in other languages.

The authors interpret the emergence of “Incompleteness” through the lens of Japanese cultural attitudes toward death. They point to qualitative research among Japanese adults identifying “Preparation for death” and “Satisfaction with life” as important categories of a desirable death, including having no regrets and feeling one has lived until fulfilling one’s life purpose; if these are not achieved, the pain associated with death may increase. Distress over uncompleted life tasks has reportedly been identified as a major existential concern among terminally ill Japanese patients with cancer. The authors suggest that for Japanese patients, death-related distress may focus more on past-oriented incompleteness than on future-oriented finitude, possibly because psychologically avoiding the finitude of time disperses that emotional burden, while unfulfilled tasks and unsaid words emerge as a more concrete and recognizable form of distress. The similarity of the “Incompleteness” items to a “Regret” subscale extracted in the Italian version suggests that the characteristics of death-related distress vary across cultures.

The study has limitations the authors acknowledge. Participants had to be well enough physically and psychologically to complete the questionnaires, and patients who refused or could not complete them were excluded, potentially introducing selection bias and limiting generalizability. The dominance of gastrointestinal, lung, and oropharyngeal tumors in the sample limits external validity to other malignancies, and the psychometric properties may differ in symptomatically and diagnostically distinct populations such as individuals with brain tumors and cognitive deficits. Test-retest reliability and known-group validity could not be assessed owing to the burden on participants, and the final confirmatory model required three residual covariances, suggesting some item pairs share variance beyond what the latent factors explain. The discriminant validity of the scale relative to hopelessness and demoralization has not yet been verified. Even so, the authors conclude that the DADDS-J demonstrates good reliability, construct validity, and a unique factor structure, making it, in their view, the first tool able to measure spiritual pain associated with death in patients with advanced cancer in Japan and suitable for both large-scale studies and clinical use, including future trials of psychotherapeutic interventions aimed at relieving death-related distress.

Subject of Research: Validation of a Japanese version of the Death and Dying Distress Scale for patients with advanced cancer

Article Title: Validation of the Japanese version of the death and dying distress scale

Article References: Miyamoto, S., Yamazaki, T., Matsubara, T., Yamagata, H., Harashima, S., Kobo, H., Abe, H., Sumitani, M., Shimizu, K., Rodin, G., & Yoshiuchi, K. (2026). Validation of the Japanese version of the death and dying distress scale. BioPsychoSocial Medicine, 20(1), Article 15. https://doi.org/10.1186/s13030-026-00362-2

Image Credits: AI Generated

DOI: 10.1186/s13030-026-00362-2

Keywords: advanced cancer, death anxiety, DADDS-J, psychometrics, palliative care, psycho-oncology, questionnaire validation, Japan, spiritual pain, cross-sectional study, factor analysis, quality of life