Care For Young Adult Survivors Research Articles

Parent-perceived Facilitators in the Transition of Care for Young Adult Survivors of Childhood Cancer.

Most childhood cancer survivors need life-long care with specialized late-effects surveillance and screening. As these children age into adulthood, it is imperative to continue their survivor-focused care. To do so, health care systems must be prepared to care for this growing and aging population. This includes creating models of care that take into account the needs and desires of all key stakeholders: survivors, parents, pediatric providers, and adult providers. This clinical observation describes that parents desire comprehensive and highly accessible survivorship care that promotes survivor independence; yet, they also want to have a central role in their child's survivorship care.

Providers' Perspectives of Survivorship Care for Young Adult Survivors of Childhood Cancer.

We examined healthcare providers' perceptions of the goals of survivorship care and survivor programs, systems-level barriers and individual patient-level barriers to engaging patients in survivorship care, and potential resources for increasing engagement. In 2012, we recruited 21 healthcare providers of young adult survivors of childhood cancers from a children's hospital and a cancer center in the Southeastern USA to complete telephone-based semi-structured interviews. The sample was 45.95 years old (SD = 7.57) on average, 52.4 % female, and 81.0 % MDs. The major goals of survivorship programs identified were medical care management (e.g., addressing late and long-term effects, providing survivorship care plans (SCPs), assisting in transition of care) and holistic care including addressing psychosocial issues and promoting healthy lifestyles. Systems-level barriers to engagement in survivorship care included limited resources (e.g., time), role confusion (e.g., within cancer centers, from treatment team to survivorship care, role of primary care providers), communication challenges within the medical system (e.g., limited tracking of patients, lack of understanding of the role of survivorship clinic), communication challenges with patients (e.g., setting expectations regarding transition to survivorship care), and lack of insurance coverage. Perceived patient-level factors included psychological barriers (e.g., fear, avoidance), resistance to survivorship care, and physical barriers (e.g., distance from survivorship clinics). Resources to address these barriers included increased access to information, technology-based resources, and ensuring valuable services. There are several systems-level and patient-level barriers to survivorship care, thus requiring multilevel interventions to promote engagement in care among young adult survivors of childhood cancer.

Patient‐perceived facilitators in the transition of care for young adult survivors of childhood cancer

A new challenge has emerged in optimizing the transition of pediatric survivorship care to similarly focused programs that are age-appropriate for young adults. The purpose of this study is to identify components of a clinical survivorship program that facilitate the transition of care for young adult survivors of childhood cancer from a pediatric to adult care-setting. Prior to transition, a descriptive study of childhood cancer survivors was conducted using a cross-sectional study design. A questionnaire was used to identify which clinical components of a survivorship program would most influence their decision to transition care to an adult medical center. Of 129 invited survivors, 103 participated (80%). Most survivors were age 16-19 years (40/103, 39%) or 20-24 years (37/103, 36%). When asked if the participant was willing to transition their survivorship care to an adult facility, 97 (95%) responded affirmatively. The clinical components most frequently rated "Very Important" in the decision to transition were the acceptance of insurance (80/103, 78%) followed by the presence of a provider knowledgeable in childhood cancer (68/103, 66%). The clinical components most frequently rated "Very Important" or "Important" were the availability of flexible scheduling (102/103, 99%) followed by the comprehensive nature of the care provided (101/103, 98%). The decision to transition survivorship care to age-appropriate care-settings is complex and not well understood. Issues related to insurance, clinical team composition and scheduling appear to be most important for young adult survivors making this decision. Pediatr Blood Cancer 2013;601365-1368. © 2013 Wiley Periodicals, Inc.

Adolescent and Young Adult Oncology: An Emerging Field

Adolescent and Young Adult Oncology: An Emerging Field

Transition of Care for Young Adult Survivors of Childhood and Adolescent Cancer: Rationale and Approaches

Young adult survivors of childhood and adolescent cancer are an ever-growing population of patients, many of whom remain at lifelong risk for potentially serious complications of their cancer therapy. Yet research shows that many of these older survivors have deficient health-related knowledge and are not engaging in recommended health promotion and screening practices that could improve their long-term outcomes. The purpose of this review is to address these disparities by discussing how formal transition of care from pediatric to adult-focused survivorship services may help meet the unique medical, developmental, and psychosocial challenges of these young adults. Literature review and discussion. This article summarizes current research documenting the medical needs of young adult survivors, their suboptimal compliance with recommended follow-up, and the rationale, essential functions, current models, and innovative approaches for transition of follow-up care. Systematic health care transition constitutes the standard of care for young adult survivors of childhood cancer. In developing a transitional care program, it is necessary to consider the scope of services to be provided, available resources, and other local exigencies that help determine the optimal model for use. Additional research is needed to improve health services delivery to this population. Effective advocacy is needed, particularly in the United States, to ensure the availability of uninterrupted health insurance coverage for survivorship services in young adulthood.

Follow-up care for young adult survivors of cancer: lessons from pediatrics

Recent advances in treatment of childhood cancer have resulted in overall survival rates approaching 75%, but approximately two-thirds experience late-effects related to the disease or treatment. Consequently, recommendations for comprehensive follow-up have been made. As the number of survivors of adult cancers increase, similar concerns about how to provide follow-up and achieve optimal quality of life are being raised. In this paper we propose that management of cancer survivors diagnosed in young adulthood (18-45 years) could benefit from experience gained treating survivors of childhood cancer. We reviewed research relating to differences in survival rates and late-effects; current arrangements for follow-up; effectiveness; and problems in organization of follow-up separately for survivors of child and adult cancers. A number of models of follow-up were identified. Rationale for follow-up included early identification and treatment of second cancer and late-effects, health promotion and screening. Increasing numbers of survivors and range of late-effects were identified as problems in organizing services. A possible solution is risk-stratified follow-up, currently being developed in pediatrics. New models of follow-up are needed that take account of financial costs for health services and survivors' concerns about their current and future health. Implications for continuing refinement of treatment protocols must be an integral part of the service. International standards are needed to ensure all survivors have access to expert follow-up care and can benefit from new information that might lead to earlier treatment of late-effects.

Health care for childhood cancer survivors: insights and perspectives from a Delphi panel of young adult survivors of childhood cancer..

Most children diagnosed with cancer are surviving into adulthood but are not receiving adequate or appropriate follow-up health care. However, to the authors' knowledge, there is little literature published to date exploring potential barriers to long-term risk-based follow-up care for young adult survivors of childhood cancer. In the current study, using a modified Delphi technique, young adult cancer survivors identified barriers to utilizing appropriate follow-up care and offered suggestions for ways to enhance health care in this young adult population. Major barriers to health care were found to be a lack of knowledge on the part of both physicians and survivors regarding long-term health issues related to cancer. Suggestions to enhance care included self-advocacy training for survivors and advanced training for primary care physicians who may treat childhood cancer survivors as they transition into adulthood. The results of the current study are consistent with reports that young adult survivors of childhood cancer need or desire information regarding their medical histories, psychosocial support, and social advocacy.

Transitional care for young adult survivors of childhood cancer.

To review the obstacles and barriers to providing optimal care to young adult cancer survivors and discuss the transition from pediatric to adult health care system. Published articles and textbook chapters. More than 70% of children diagnosed with cancer between birth and 14 years of age will be cured of their primary disease. Because of multiple physical and psychosocial risk factors imposed by their therapy and previous disease, childhood cancer survivors require life-long care. Health care providers must be aware of the unique needs of these individuals for life-long follow-up and assist in facilitating this transition process.