TABLE 2.
Barriers to LTFU Care After Childhood Cancer
| Country/Region | Study Population | Study Design | Objective | Study Findings |
|---|---|---|---|---|
| China (Hong Kong)49 | 155 CCSs 45 caregivers (93% response rate) |
Cross-sectional structured questionnaire | To evaluate cancer-specific knowledge about diagnosis, treatment, and risk of late effects | 73.5% recalled diagnosis 88%-92% recalled major treatment modalities 45% recognized more than a quarter of late effects risks |
| China (Hong Kong)48 | 200 CCSs (94% response rate) | Cross-sectional structured questionnaire | To investigate factors associated with health behaviors To examine survivor expectations of a survivorship program |
67% reported ≥1 suboptimal practice of health-protective behaviors Late-effects screening (78%) and psychosocial services (77%) endorsed as essential components of a survivorship program |
| China (Taiwan)50 | 1,411 patients with cancer diagnosed before age 18 years | Review of claims data in national Longitudinal Health Insurance database | To investigate transition from pediatric to adult health care for patients with cancer in Taiwan's medical system | 98.1% received adult-oriented therapy before age 18 years while 1.9% received pediatric-oriented therapy during adolescence Age at the first visit significantly associated with adult-oriented care Significantly lower proportion of children receiving adult-oriented care in facilities designated superior in hospital accreditation and excellence in teaching hospital |
| India36 | 86 pediatric cancer centers (68.6% response rate) | Cross-sectional online survey | To evaluate survivorship care services in India | 91% provided survivorship care within routine oncology clinics, without upper age limit (61%) or time period limit (63%) for follow-up Barriers to participation in LTFU care: follow-up are distance, lack of knowledge, lack of adequate facilities, and patient priority for follow-up |
| India47 | 79 AYA survivors of childhood cancer | Semistructured interviews | To evaluate barriers to participation in LTFU among AYA CCSs | Survivor and caregiver barriers to participation in LTFU care: feeling well, competing demands related to school, work and family, increased time since treatment |
| Japan40 | 74 CCSs 40 caregivers (77% response rate) |
Cross-sectional survey | To assess socioeconomic status, knowledge about diagnosis, treatment, and late effects, and hospital attendance patterns | 75% recalled diagnosis 30% knew about late effects risks Reasons for not returning for LTFU included physician in charge advised that follow-up was not necessary and survivors thought that they were in good health. |
| Japan38 | 185 CCSs 72 siblings 1,000 general population controls (72% response rate) |
Cross-sectional survey | To evaluate medical visits of survivors compared with control groups | 95% visited a medical facility during previous year 29% had a treatment summary Previous oncology care hospitals were most commonly visited medical facilities (64%-74%) 67% endorsed preference for medical visits at previous treatment facility and 26% at a LTFU clinic |
| Japan42 | 533 pediatric oncologists (56% response rate) and 325 pediatric surgeons (32% response rate) from Japanese Society of Pediatric Oncology | Cross-sectional survey | To examine self-reported preferences and knowledge about health care needs of young adult CCSs among pediatric oncologists and surgeons | 62% of pediatric oncologists and 43% of surgeons responded correctly to vignettes about survivorship care Most shared information about cancer diagnosis with adults treated for childhood cancer Both groups endorsed the importance of Japanese-adapted LTFU guidelines and collaborations with adult-based general physicians for care transitions |
| Japan44 | 631 Japanese CCSs (age 15-26 years) in Heart Link mutual-aid health insurance 108 Canadian childhood cancer survivors (42.5% response rate) |
Cross-sectional survey | To examine transition barriers and facilitators in Japanese survivors and compare to those of survivors in Canada | Compared with Canadian survivors, Japanese survivors Showed greater preference for self-management (eg, access to care, medication management, medical insurance) Showed lower levels of expectation concerning adult care (eg, knowing cancer history, reminders before appointment, relationship with doctor) Preferred to see same doctor for LTFU care as adults |
| Japan43 | 30 CCSs (53% response rate) and 27 caregivers (47% response rate) returning for LTFU care | Cross-sectional survey | To determine survivor and family lifestyle, healthcare practices, understanding of late effects, and anxieties related to survivorship | 20%-30% of CCS survivors endorsed experiencing problems when receiving care at facility other than cancer treatment facility Fewer survivors (33%) compared with caregivers (67%) knew about late effects Both groups had comparable levels of anxiety related to challenges associated with survivorship |
| Japan31 | 271 HCT centers (189 adult and 82 pediatric) from national transplant registry database (69% response rate) | Cross-sectional survey | To characterize LTFU clinic operations in Japan | 62% reporting having a LTFU clinic Lack of human resources (especially nurses) was most frequent reason for not operating a LTFU clinic 92% did not have age or time criteria for terminating LTFU 56% recommended continuing LTFU care 5 years after transplant 75% of pediatric centers did not routinely refer survivors to an adult HCT center for LTFU care |
| Japan46 | 183 councilors (137 institutions) of the Japanese Society for Pediatric Endocrinology (95% response rate) | Cross-sectional survey | To ascertain the current status of transitional care in childhood and AYA cancer survivors | 91% endorsed experience in medical care for cancer patients and 63% with experience in transitional care 43.5% of institutions had a LTFU clinic but only 7.6% had transition support programs or support Despite 89% reporting access to adult clinics, the number of patients referred to adult clinics was small Barriers to providing survivorship care: staff and time shortages, lack of definition of staff roles, insufficient knowledge about cancer and therapy, differences in patient physician relationships in pediatric and adult clinics, insufficient information about late effects, and lack of clinical experience Patient-related barriers: need to manage multisystem morbidity, financial burdens, time-related burdens, lack of awareness regarding health-related issues, and failure to recognize importance of LTFU |
| Japan39 | 1,305 specialists (192 pediatric and 1,109 adult) from Japanese cancer-related professional societies | Cross-sectional internet survey | To investigate the medical care of AYA adult cancer patients To compare approaches toward AYA cancer care by pediatric and adult cancer specialists |
Providers endorsed importance of multidisciplinary collaboration among pediatric and adult specialists For pediatric cancer AYA survivors, 34.9% of pediatric specialists and 36.2% of adult specialists preferred transition to corresponding adult medicine department Only 2.4%-5.3% of specialists considered that primary care physicians would serve as primary clinicians for AYA survivors |
| Japan41 | 121 CCSs (69.4% response rate) | Cross-sectional survey | To identify factors responsible for discontinuing LTFU To define the support needs of CCSS |
80% reported late complications LTFU decreased over time related to provider reasons (35.6%, eg, electively discontinued after 5 years) and patient reasons (64.4%, eg, not experiencing problems) Survivors endorsed need for support for financial and medical expenses (29.8%), assistance in returning to work (26.2%), and improvement of societal understanding of survivorship challenges (22.6%) Survivors related need for a treatment summary and peer support tailored to the different stages of life |
| Singapore51 | 23 AYA cancer survivors (diagnosed 16-39 years) and 18 health care providers | Focus group discussions | To explore perceptions of survivorship services in Singapore To propose service design and delivery strategies |
AYA survivors perceived that currently available care fails to address needs of their needs Preferred services: age-specific services addressing employment challenges, introducing care navigators to assist with challenges across cancer care continuum Implementation strategies proposed: provider training on communication techniques with AYA, leveraging social media platforms to promote health information and publicity, consolidating services from multiple providers |
| South Korea52 | 680 parent caregivers of CCSs | Cross-sectional survey | To investigate satisfaction with survivorship care and preferences for survivorship care provider | 80% recognized that shared care promotes health of survivors 68.7%-90.9% preferred oncologists to provide follow-up care of primary cancer than primary care physicians Caregivers with multiple comorbidities and higher fear of cancer recurrence endorsed preference for oncology v primary care providers |
| Turkey32 | 33 pediatric oncology centers in the Turkish Pediatric Oncology Group (TPOG) (64% response rate) |
Cross-sectional survey | To determine the current status and challenges of LTFU for CCSs at pediatric oncology institutions in Turkey | Only one center had a separate LTFU clinic independent of acute care Most centers provided LTFU care at the acute care pediatric oncology outpatient clinic None used standardized, risk-based, survivor-focused guidelines Challenges in LTFU care: difficulty in the pediatric to adult care transition, insufficient care providers, and insufficient time and transportation problems |
| Turkey53 | 16 survivors of childhood acute lymphoblastic leukemia | Semistructured, in-depth interviews | To explore adolescent survivors' views and expectations about LTFU care | Survivors endorsed need for psychosocial support related to self-esteem, body image, school, peer relations, and social activities Survivors identified school absence and limitations in participation in social activities as barriers to LTFU care Survivors recognized health promotion as potential benefits of LTFU care |
| International45 | 58 medical specialists (67.2% pediatric oncologists) | Cross-sectional survey | To explore priorities and perspectives for survivorship care and research | 48.3% respondents from Asia and 39.7% from Europe/North America LTFU care priorities: physical care (35.9%-39.3%), multidisciplinary providers and transition support (26.0%-29.4% ≤18 years) Asian clinicians primarily prioritized physical care aspects of follow-up care, whereas European/North American clinicians prioritized health care structure Obstacles to LTFU care are lack of financial resources, workforce, knowledge of importance of LTFU, cooperation, time, support by the hospital, communication with primary care and difficulties in reaching survivors |
Abbreviations: AYA, adolescent and young adult; CCSs, childhood cancer survivors; CCSS, Childhood Cancer Survivor Study; HCT, hematopoietic cell transplantation; LTFU, long-term follow-up.