ABSTRACT: To describe survivorship services provided by the Children's Oncology Group (COG), an assessment of services was undertaken. Our overall aims were (1) to describe survivorship services, including the extent of services provided, resources (personnel, philanthropy, and research funding), billing practices, and barriers to care and 2) to describe models of care that are in use for childhood cancer survivors and adult survivors of childhood cancer.
One hundred seventy-nine of 220 COG institutions (81%) completed an Internet survey in 2007.
One hundred fifty-five (87%) reported providing survivorship care. Fifty-nine percent of institutions provide care for their pediatric population in specialized late effects programs. For adult survivors, 47% of institutions chose models of care, which included transitioning to adult providers for risk-based health care, while 44% of institutions keep survivors indefinitely at the treating institution (Cancer Center Based Model without Community Referral). Sixty-eight percent provide survivors with a copy of their survivorship care plan. Only 31% of institutions provide a detailed summary of results after each clinic visit, and 41% have a database to track survivor health outcomes. Minimal time required for initial and annual survivorship visits is estimated to be approximately 120 and 90 min, respectively. The most prevalent barriers to care were the lack of dedicated time for program development and a perceived insufficient knowledge on the part of the clinician receiving the transition referral.
Not all COG institutions provide dedicated survivorship care, care plans, or have databases for tracking outcomes. Transitioning to adult providers is occurring within the COG. Survivorship care is time intensive.
Journal of Cancer Survivorship 09/2011; 5(4):345-57. · 2.63 Impact Factor
ABSTRACT: Childhood cancer survivors require life-long care by clinicians with an understanding of the specific risks arising from the prior cancer and its therapy. We surveyed North American pediatric hematology/oncology training programs to evaluate their resources and capacity for educating medical trainees about survivorship.
An Internet survey was sent to training program directors and long-term follow-up clinic (LTFU) directors at the 56 US and Canadian centers with pediatric hematology/oncology fellowship programs. Perceptions regarding barriers to and optimal methods of delivering survivorship education were compared among training program and LTFU clinic directors.
Responses were received from 45/56 institutions of which 37/45 (82%) programs require that pediatric hematology/oncology fellows complete a mandatory rotation focused on survivorship. The rotation is 4 weeks or less in 21 programs. Most (36/45; 80%) offer didactic lectures on survivorship as part of their training curriculum, and these are considered mandatory for pediatric hematology/oncology fellows at 26/36 (72.2%). Only 10 programs (22%) provide training to medical specialty trainees other than pediatric hematology/oncology fellows. Respondents identified lack of time for trainees to spend learning about late effects as the most significant barrier to providing survivorship teaching. LTFU clinic directors were more likely than training program directors to identify lack of interest in survivorship among trainees and survivorship not being a formal or expected part of the fellowship training program as barriers.
The results of this survey highlight the need to establish standard training requirements to promote the achievement of basic survivorship competencies by pediatric hematology/oncology fellows.
Pediatric Blood & Cancer 06/2011; 57(7):1186-90. · 1.89 Impact Factor
ABSTRACT: Survivors of central nervous system tumors (SCNST) are a growing group of cancer survivors who require risk-based, long-term health care due to the chemotherapy, surgery, and radiation they have received.Although treatment strategies are being developed to reduce morbidity and mortality, ultimately this subgroup of pediatric cancer survivors often faces moderate to severe late effects of their treatment.As a result, they will need lifelong health care that includes risk-based health care due to cancer treatment exposures as well as primary adult health care, including primary and secondary preventative care. The best way to accomplish lifelong health care for SCNST as they enter adulthood is not clearly defined. In this article, the authors plan to (1) present an overview of the complexities of health care problems that make transition challenging for SCNST; (2) review the evolving transition literature; (3) explore the barriers to successful transition; (4) discuss methods to facilitate transition; (5) describe approaches, strategies, and models for survivorship care in SCNST; (6) present issues for consideration when transitioning SCNST; and (7) provide information on transition-related resources.
Journal of Pediatric Oncology Nursing 26(5):280-94. · 0.70 Impact Factor