This study aims to (i) develop a screening tool for determining distress and supportive care needs of adolescent and young adult cancer patients (AYAs) based on the NCCN's Distress Thermometer and Problem List (DTPL), (ii) evaluate its feasibility, discriminant validity, and test–retest reliability in clinical settings, and (iii) report prevalence of distress and unmet needs.

In the development phase, after translation of the Japanese version of the DTPL (DTPL-J) from English into Japanese and back translation, cognitive debriefing was performed. Items in the problem list were modified to better reflect AYAs’ concerns after interviews. The modified items were reviewed and accepted unanimously by healthcare professionals. In the feasibility phase, the DTPL-J for AYAs was used in a clinical setting for 3 months. Descriptive statistics of participants’ demographics, selected items, and DT scores were calculated to report prevalence of distress and unmet needs. Response and referral rates to experts were assessed to evaluate feasibility. Some items were compared with patient demographics to assess discriminant validity. Among the patients who responded at least twice, correlations between two consecutive screenings were assessed to evaluate test–retest reliability.

The DTPL-J consisted of 49 items in five categories. Of 251 patients, 232 (92.4%) were provided the DTPL-J and 230 (91.6%) responded. Based on the DT cutoff of ≥4, 69 of 230 patients (30%) had high distress. Anxiety (n = 85, 36.6%) was the most commonly selected item. Primary nurses referred 45 (21.7%) patients to an attending physician or another expert. Referral rates after DTPL-J use were higher than rates before use, but the difference was not statistically significant (p = 0.06). The items compared were consistent with their social background. A positive correlation was observed between two responses for some items.

The feasibility, discriminant validity, and test–retest reliability of the tool were suggested.

Adolescent and young adult (AYA) cancer patients may be at high risk of experiencing psychological distress because their diagnosis came during a key time of consolidation of identity and social growth. This study aimed (1) to examine the prevalence of psychological distress among AYA cancer patients within a year of diagnosis to long-term survivors and (2) to describe socio-demographic and cancer-related characteristics associated with psychological distress.

In a cross-sectional web-based survey, patients who scored 5 or more on the Kessler Psychological Distress Scale were assessed for significant psychological distress. Logistic regression examined whether demographics, clinical variables, and social support were associated with psychological distress.

A total of 206 young adult cancer patients participated. The median age at the survey was 34.5 years (range: 22–39 years), and 87.4% were female. The prevalence of psychological distress was 55.3%. Psychological distress among patients diagnosed within a year and long-term survivors (≥10 years since diagnosis) was significantly higher than patients 1–4 years since diagnosis. Pain, decrease in income after a cancer diagnosis, experience of negative change in work/school after a cancer diagnosis and poor social support were significantly associated with psychological distress.

Over half of young adult patients had significant psychological distress in Japan. Our findings potentially contribute to the intervention components for distress management among AYA cancer survivors.