New 25-Item Questionnaire Measures What Cancer Patients Know and Want From Life and Death Education

Researchers in Zunyi, China, have developed and tested a 25-item questionnaire designed to measure how much hospitalized cancer patients know about life and death education, how they feel about it, and what kind of education they would prefer to receive. The instrument, described in a methodological study published in Frontiers in Oncology, contains three dimensions covering cognition, attitude, and selection preference, and the authors report strong internal consistency and content validity across their survey sample of 300 patients.

The work responds to a practical gap. According to the authors, life and death education aims to provide overall care at the psychological, social, and spiritual levels for cancer patients, helping to identify different types of anxiety and fear and offering management measures, while assisting family members to provide psychological support, spiritual support, and companionship. The goal is to guide patients and their families to recognize and treat death scientifically and to accept it calmly. In China, however, the authors argue that insufficient cultural background and public cognition leave many cancer patients lacking knowledge about life and death education, and that few scientific assessment tools exist to measure their cognition and needs, making related research difficult to carry out.

The study was structured in two phases. The first phase built the questionnaire through literature analysis, qualitative interviews, and two rounds of Delphi expert consultation. The second phase evaluated its psychometric properties through a cross-sectional survey of cancer patients hospitalized in the oncology department of a general hospital in Zunyi between March and July 2022. The 5W1H method served as the theoretical framework for the selection preference dimension, analyzing questions from six angles: why the education is necessary, what content it should cover, when it should occur, where it should take place, who should provide it, and how it should be delivered.

To assemble the initial item pool, the team searched Chinese and English databases including CNKI, Wanfang, the Chinese Biomedical Literature Service System, VIP, PubMed, Web of Science, and OVID LWW Journals for literature on death education from database inception to August 2021. They then conducted qualitative interviews with 17 cancer patients selected by purposive sampling, using an outline of eight open questions covering prior exposure to life and death education, desired content, perceived necessity, preferred timing, location, provider, and delivery method. Interview data were analyzed with Colaizzi’s phenomenological seven-step method and Nvivo software within 24 hours of each interview, and the results led the team to add a cognition dimension, producing an entry pool of two dimensions and 25 items.

Expert refinement followed. Fourteen experts, drawn from nursing management, nursing education, oncology nursing, and hospice care, completed two rounds of Delphi consultation between December 2021 and February 2022. All had at least ten years of professional experience, a bachelor’s degree or higher, and an associate senior professional title or above. Items were scored on a five-point importance scale, with retention criteria requiring a mean importance score above 3.50 and a coefficient of variation below 0.25. In the first round, importance scores ranged from 3.53 to 4.87 and twelve experts offered suggestions, including merging several hospice-related items, adding an item about understanding the end-of-life process, and deleting items judged redundant. The second round produced importance scores from 4.50 to 5.00 with coefficients of variation between 0.00 and 0.17, and the addition of an attitude dimension yielded the final three-dimension, 25-item draft.

The resulting questionnaire allocates three items to cognition, covering whether patients have heard of life and death education, know what it is, and know what hospice care is; five items to attitude, asking about willingness to discuss life and death, to voice end-of-life wishes, and to receive related information; and seventeen items to selection preference, mapped onto the 5W1H framework. All items use five-level Likert scoring, with cognition scored from very unfamiliar to very familiar, attitude from very unwilling to very willing, and most preference items from very undesirable to very desirable. Five of the preference items are multiple-choice and unscored. Higher totals indicate better cognition, more positive attitude, or stronger preference.

Before the main survey, a pre-investigation with 30 hospitalized cancer patients in March 2022 confirmed that respondents could understand the questionnaire and complete it in roughly 15 to 20 minutes without modification. The main survey used convenience sampling to recruit 300 patients, a size calculated as five to ten times the number of items with an allowance for invalid responses. Inclusion required pathologically confirmed cancer, awareness of their condition, age 18 or older, normal intelligence and communication ability, and acceptance of the topic of life and death education with signed informed consent. Patients with mental disorders, dementia, or cognitive impairment, those with unstable or rapidly deteriorating conditions, and those averse to the topic of death were excluded.

The sample was predominantly middle-aged, with a mean age of 53.90 years, and included 174 men and 126 women. Head and neck tumors accounted for 118 patients, thoracic tumors for 106, abdominal tumors for 73, and other tumors for 3. Most participants, 248, had junior high school education or below, 284 were married, and 250 reported monthly family income below 3,000 RMB. The authors note that quality control measures included unified investigator training, on-site completeness checks, and double-checked data entry.

Psychometric results were favorable. Exploratory factor analysis of the 20 scored items produced a KMO value of 0.935 and a significant Bartlett’s test, and principal component analysis extracted three common factors with a cumulative variance contribution of 72.148 percent, matching the intended three-dimension structure. Content validity, judged by seven experts from nursing management, surgical nursing, oncology nursing, and hospice nursing, yielded item-level content validity indices from 0.86 to 1.00, a scale-level consistency index of 0.90, and a scale-level average of 0.986. Reliability testing showed an overall Cronbach’s alpha of 0.954, with dimension-level alphas of 0.850, 0.947, and 0.943; split-half reliability of 0.892 for the total questionnaire; and test-retest reliability of 0.853.

The authors conclude that the questionnaire shows good reliability and validity and can serve as an auxiliary tool for evaluating cancer patients’ life and death education cognition and needs, potentially helping clinicians deliver targeted education and psychological guidance. They also acknowledge limitations: the psychometric evaluation was a single-center cross-sectional survey with limited sample representativeness and no cross-disciplinary collaboration, and they call for multi-center, large-sample mixed studies to test clinical practicability. The study received ethics approval from the Affiliated Hospital of Zunyi Medical University, and the questionnaire is presented as a measurement instrument whose clinical value will depend on further validation rather than as an intervention with demonstrated benefit.

Subject of Research: Development and psychometric validation of a questionnaire assessing cancer patients' life and death education cognition and preferences

Article Title: Development and validity and reliability testing of a questionnaire on life and death education cognition and selection preference of cancer patients

Article References: Huang, R., Zhang, X., Chen, W., Li, Y., & Li, J. (2026). Development and validity and reliability testing of a questionnaire on life and death education cognition and selection preference of cancer patients. Frontiers in Oncology, 16, Article 1822600. https://doi.org/10.3389/fonc.2026.1822600

Image Credits: AI Generated

DOI: 10.3389/fonc.2026.1822600

Keywords: cancer patients, life and death education, questionnaire development, psychometric validation, hospice care, Delphi method, content validity, reliability, cross-sectional survey, China, palliative care, nursing