A questionnaire study of support for adult survivors of childhood cancer

Abstract

Background: Childhood cancer survivors (CCSs) entering adulthood experience different problems, including late therapy-related complications. Long-term follow up (LTFU) is important for early intervention and psychosocial support for CCSs with late complications but it is frequently discontinued. This study aimed (i) to identify clearly the factors responsible for LTFU discontinuation, and (ii) to define the support needs of CCSs. Methods: From July, 2017 to March, 2019 we conducted a questionnaire survey of 121 CCSs aged ≥ 18 years at the time of the survey to investigate people who have experienced childhood cancer and identify their support needs. This was conducted in cooperation with patient associations throughout Japan. The LTFU levels were determined by CCSs themselves based on their treatment history. Long-term follow-up rates and LTFU discontinuation factors were assessed using the Kaplan-Meier method and the Cox proportional-hazards model. Results: Late complications were the most common problem encountered by CCSs (80%). The most common support need was "explanation of late complications by a physician," reported by 86.9% of respondents. The rate of LTFU continuation decreased over time. The LTFU was discontinued both for physicians' reasons (35.6%) and patients' reasons (64.4%). Not knowing the extent or level of one's LTFU was reported to be an independent factor (P < 0.05) preventing LTFU continuation. As necessary support to continue LTFU, 67.9% of respondents stated the need for "explanation of LTFU by a doctor" and 60.7% stated "convenience of outpatient visit". Conclusions: Childhood cancer survivors require support, especially for late complications. It is necessary to continue LTFU, raising LTFU awareness among physicians and CCSs.

Care Models and Barriers to Long-Term Follow-Up Care Among Childhood Cancer Survivors and Health Care Providers in Asia: A Literature Review

“…In another study, Japanese CCSs endorsed need for support of financial and medical expenses (29.8%); assistance in returning to work (26.2%); and improvement of societal understanding of survivorship challenges (22.6%), especially related to employment. 41 Finally, leukemia survivors from Turkey had similar perceptions about the need for assistance to address psychosocial challenges during survivorship. 53 …”

“…Studies targeting survivors and caregivers largely involved cross-sectional surveys administered to convenience samples of survivors and caregivers during clinic visits or via online platforms. 32 , 36 , 41 - 46 , 48 , 49 , 52 Two studies that focused on AYA survivors used qualitative methods such as semistructured interviews 47 and focus group discussions. 51 …”

“…Across all studies from Asian countries, themes identified related to potential barriers to adherence to participation in LTFU care included knowledge deficits (about cancer diagnosis, cancer treatment, risk of late effects), 40 , 43 , 49 lack of endorsement of need for LTFU care by the treating physician, 40 perception that LTFU was not necessary because they felt well and were not experiencing problems, 40 , 41 , 47 and competing demands related to school, work, or family. 47 , 53 …”

“…In addition to knowledge deficits, survivors and caregivers endorsed practical and financial challenges that reduced priority for participation in care. 40 , 41 , 47 , 53 Similarly, HCPs related that lack of time, resources, and personnel limited their ability to offer LTFU services. 32 , 36 , 45 Study findings provide important information to guide the development of LTFU programs that are valued, culturally appropriate, and feasible to implement.…”

“…Six Asian countries have conducted studies to understand survivors'/caregivers' or HCPs' perspectives about survivorship care including their preferences for and barriers to participation in LTFU care. 31,32,36,[38][39][40][41][42][43][44][45][46][47][48][49][50][51][52][53] Table 2 summarizes the characteristics of these studies in alphabetical and chronological order of countries/regions according to the United Nations Geoscheme for Asia. 30 Survivor/Caregiver Perspectives and Preferences…”