RESUMO
Although palliative sedation therapy (PST) is considered to alleviate intolerable and refractory symptoms in dying patients with advanced cancer, there have been few studies regarding the situation of tertiary cancer center. We conducted a retrospective survey of the medical records of the patients who died between April 2015 and March 2016 at the National Cancer Center Hospital in Japan. PST was conducted in 75 out of 431 patients (17.4%). The patient demographics were as follows: sex (male/female), 48/27; median age, 61 years (range 5-83; 11 patients (14.7%) were aged under 39 years); and primary sites were lung, 18 (24.7%)/ pancreas, 11 (14.7%)/ hematopoietic organs, 11 (14.7%)/ bones and soft tissues, 8 (10.7%)/ and the others, 27 (36.0%). The main target symptoms for PST were dyspnea (38, 50.7%) and delirium (30, 40.0%). The most commonly used sedative agent was midazolam (72, 96.0%). Continuous deep sedation was intended in 61 patients (81.3%) at the death. Median survival from the start of PST were 2 days (range 0-54). The differences between palliative care team (PCT) intervention group and control group were lower age (58 vs. 62.5, P=0.048) and uniformity of initial midazolam dose (5-12 vs. 9.6-25.2 mg/day). Distinctive feature in this study was large proportion of adolescent and young adult patients with rare cancers. PCT might have different approaches to sedation in comparison to non-PCT medical staffs.
RESUMO
Background: Adolescents and young adults (AYA) with cancer go through various life events during their illness trajectory, and there is often insufficient information on their diseases due to their rarity. Few chances are available for AYA patients to meet and share information with each other. Therefore, at the National Cancer Center Hospital in Japan we hold AYA Hiroba, a monthly get-together for AYA patients to communicate with each other. This study investigated satisfaction and effect with the activity. Methods: We have held the AYA Hiroba activity once a month since May 2016. We asked participants to complete a questionnaire at each session.Results: We held the activity 33 times between May 2016 and May 2019. A total of 130 patients participated, and 97 of them completed the questionnaire, including providing demographic data, since October 2017. The respondent demographics were as follows: sex (male/female), 38/59; median age, 29 years (range 14–39 years); outpatients/inpatients, 31/66; number of sessions attended (1/≥2), 42/55; and cancer type (sarcoma/malignant lymphoma/brain tumor/germ cell tumor/leukemia/melanoma/breast cancer/neuroblastoma/Wilms tumor/lung cancer/cervical cancer/nasopharyngeal cancer/tongue cancer/blank), 45/11/9/7/6/5/3/3/2/1/1/1/1/2). Many attendees perceived the activity favorably: “It was very satisfying” (61.7%), and “It was very helpful” (65%). The feedback was classified into three categories: “interaction with the same generation”, “diversion”, and “getting information”. Discussion: AYA patients have a great need to communicate with each other, and the feedback suggests that AYA Hiroba would be effective in interaction with the same generation, diversion and getting information. Most participants were very satisfied with the program.
RESUMO
Adolescent and young adult(AYA)leukemia is a typical group among the childhood leukemia.The AYA leukemia patients have not achieved the same improvements in overall survival because of their unique biological and psychological characteristics,which are often underemphasized due to the AYA patients being treated as"big child"in children′s hospital or"little adult"in adult′s hospital.Setting up a multi-disciplinary team(MDT)inclu-ding hemato-oncologists,nurses,psychologists,endocrinologists,nutritionists and pharmacologists can improve the out-come and quality of life for AYA patients with leukemia.