ABSTRACT
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.
ABSTRACT
Rectal irritative symptoms in cancer patients are often refractory to treat and exacerbate their quality of life. We experienced a peadiatric case of rectal irritative symptoms treated by Yokukansan. A 9 year-old boy developed rectal irritative symptoms as itching sensation in rectum caused by relapsed rhabdomyosarcoma in pelvis. Oral Yokukansan, which is common Japanese Kampo medicine for temper tantrum of children, was administered and relieved his symptoms. Yokukansan is known as adjuvant drug for neuropathic pain. It could be one of the adjuvant drugs for refractory symptoms in palliative care setting.
ABSTRACT
Background: Cancer may have impacts on parents for child rearing. There has been few reports regarding what support is needed for them. The aim of this study is to investigate the needs of support system for cancer patients who have young children. Methods: First, we retrospectively studied records of specialized support for patients who had young children by palliative care team in National Cancer Center Hospital (NCCH) from April 2013 to September 2015. The data was collected from the NCCH electronic medical records. Next, we qualitatively classified the concerns about child-rearing of patients and their family. Results: A total of 131 (Male/Female: 41/90) cases received specialized support for patients who had young children during study period. The average age of patients was 43.3. Top three of primary sites of the patients were gastrointestinal tract, lung and breast. Approximately eighty percent of the patients were in the state of the recurrence and/or progressive cancer. The average age of their young children (n=239) was 9.6 (ages 0-17). The parents’ perceptions of child-related stressors were classified into three subcategories: 1. How to tell children about illness and treatment, 2. How to manage children’s reaction and emotion after having told them about illness, and 3. How to keep the parents’ role of child-rearing. Discussion: We found that patients who have children (age 0-17) have various types of concerns depending on their condition or age of children. Therefore, multi-disciplinary team approach for improving an effective support system was needed.