Brad Zebrack

Social Outcomes in the Childhood Cancer Survivor Study Cohort

Difficulties with negotiating and achieving desired social outcomes in life may be exacerbated by the experience of childhood cancer, including adverse effects from therapies used to achieve a cure. This review of previous publications from the Childhood Cancer Survivor Study (CCSS) and other relevant literature provides insight into the prevalence of, and risk factors for, poor educational attainment, less than optimal employment status, and interpersonal relationship issues among long-term survivors of childhood cancer. The impacts of emotional health and physical disability on social outcomes are also examined. Study results suggest that childhood cancer survivors generally have similar high school graduation rates, but are more likely to require special education services than sibling comparison groups. Survivors are slightly less likely than expected to attend college, and are more likely to be unemployed and not married as young adults. Cancers and treatments that result in impairment to the CNS, particularly brain tumors, or that impact sensory functioning, such as hearing loss, are associated with greater risk for undesirable social outcomes, as are emotional health problems and physical disability. This review of relevant data from CCSS and other studies provides information on risk factors for social problems into adulthood. A greater understanding of the long-term social impacts from the diagnosis and treatment of childhood cancer is critically important for developing targeted interventions to prevent or ameliorate adverse psychosocial effects.

Behavioral and Social Outcomes in Adolescent Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study

PURPOSE Adolescents, regardless of medical history, may face behavioral and social challenges. Cancer and related treatments represent additional challenges for teens navigating the transition from childhood to adulthood. This study was conducted to evaluate behavioral and social outcomes of adolescent childhood cancer survivors using data from the Childhood Cancer Survivor Study. PATIENTS AND METHODS We evaluated 2,979 survivors and 649 siblings of cancer survivors to determine the incidence of difficulty in six behavioral and social domains (depression/anxiety, headstrong, attention deficit, peer conflict/social withdrawal, antisocial behaviors, and social competence). Outcomes were determined by calculating parent-reported scores to questions from the behavior problem index. RESULTS Survivors and siblings were similar in age at the time of interview (mean: 14.8, survivors; 14.9, siblings; range, 12 to 17 years). Overall, multivariate analyses showed that survivors were 1.5 times (99% CI, 1.1 to 2.1) more likely than siblings to have symptoms of depression/anxiety and 1.7 times (99% CI, 1.3 to 2.2) more likely to have antisocial behaviors. Scores in the depression/anxiety, attention deficit, and antisocial domains were significantly elevated in adolescents treated for leukemia or CNS tumors when compared with siblings. In addition, survivors of neuroblastoma had difficulty in the depression/anxiety and antisocial domains. Treatments with cranial radiation and/or intrathecal methotrexate were specific risk factors. CONCLUSION Adolescent survivors of childhood cancer, especially those with a history of leukemia, CNS tumors, or neuroblastoma, may be at increased risk for adverse behavioral and social outcomes. Increased surveillance of this population, in combination with development of interventional strategies, should be a priority.

Psychosocial Care of Adolescent and Young Adult Patients With Cancer and Survivors

The delivery of quality care for adolescent and young adult (AYA) patients with cancer and survivors requires an understanding of the unique qualities of this group--the shared norms, attitudes, and beliefs that determine their behavior as well as the unique stresses they face on a day-to-day basis. All AYAs have typical concerns about being comfortable with who they are and who they want to become (identity development, including sexual identity), their bodies (body image), initiating intimate and emotional relationships, separating from parents, and making independent decisions about future goals such as career, higher education, and/or family (autonomy). Yet efforts of AYA patients with cancer and survivors to mature are often confounded by restrictions and limitations placed on them by their disease and treatment. This article promotes understanding of psychosocial challenges faced by AYAs when diagnosed with and treated for cancer. It reviews evidence-based psychosocial support interventions for AYAs with cancer and other life-threatening or chronic diseases, particularly the positive effects of peer support, technology-based interventions, and skill-based interventions. The article concludes with recommendations for clinical care that are intended to promote the ability of AYAs to cope with cancer.

Psychological, social, and behavioral issues for young adults with cancer.

Theories of human development suggest that, although all cancer patients experience a common set of life disruptions, they experience them differently, focus on different issues, and attach different levels of importance to different aspects of the experience depending on the time in life at which they were diagnosed. During the critical developmental transition from childhood to adulthood, older adolescents and young adults in particular have typical concerns with establishing identity, developing a positive body image and sexual identity, separating from parents, increasing involvement with peers and dating, and beginning to make decisions about careers or employment, higher education, and/or family. Accordingly, cancer‐related issues such as premature confrontation with mortality, changes in physical appearance, increased dependence on parents, disruptions in social life and school/employment because of treatment, loss of reproductive capacity, and health‐related concerns about the future may be particularly distressing for adolescents and young adults. Psychosocial and behavioral interventions for young adult cancer patients and survivors often involve assisting these individuals in retaining or returning to function in significant social roles, such as spouse, parent, student, worker, or friend. Successful interventions will enable these young people to overcome the detrimental impact of a health crisis and strengthen the internal and external coping resources available to them. Cancer 2011;117(10 suppl):2289–94.

Assessing the health care needs of adolescent and young adult cancer patients and survivors

Improvements in cancer outcomes observed for the United States population as a whole are not experienced as such by adolescent and young adult (AYA) patients. The objective of this study was to identify important health and supportive care needs for AYA patients and survivors.

Providing developmentally appropriate psychosocial care to adolescent and young adult cancer survivors

To deliver developmentally appropriate psychosocial care, the key developmental tasks facing adolescents and young adults (AYA) need to be taken into consideration. These include establishing autonomy from parents; a personal set of values and identity; strong peer relationships, including intimate and sexual relationships; and obtaining adequate preparation to join the workforce. To minimize the amount of disruption caused by the cancer experience and to maximize the health‐related quality of life of AYA patients, young individuals with cancer need opportunities to participate as much as possible in typical AYA activities and to master the developmental tasks of this life stage. Promoting a sense of normalcy is essential. To achieve this, the health care environment must be flexible and recognize the important role of peers. Informational and practical supports also are necessary for AYA to stay on track developmentally in the context of coping with cancer. Critical elements of effective AYA psychosocial services should include access to AYA‐specific information and support resources, fertility and sexuality counseling, programs to maximize academic and vocational functioning, and financial support. Cancer 2011;117(10 suppl):2329–34.

Positive and negative psychosocial impact of being diagnosed with cancer as an adolescent or young adult

The objective of this study was to explore the psychosocial impact of cancer on newly diagnosed adolescent and young adult (AYA) cancer patients.

Health-Related Quality of Life of Adolescent and Young Adult Patients With Cancer in the United States: The Adolescent and Young Adult Health Outcomes and Patient Experience Study

PURPOSE Adolescents and young adults (AYAs) diagnosed with cancer face numerous physical, psychosocial, and practical challenges. This article describes the health-related quality of life (HRQOL) and associated demographic and health-related characteristics of this developmentally diverse population. PATIENTS AND METHODS Data are from the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study, a population-based cohort of 523 AYA patients with cancer, ages 15 to 39 years at diagnosis from 2007 to 2009. Comparisons are made by age group and with general and healthy populations. Multiple linear regression models evaluated effects of demographic, disease, health care, and symptom variables on multiple domains of HRQOL using the Pediatric Quality of Life Inventory (PedsQL) and the Short-Form Health Survey 12 (SF-12). RESULTS Overall, respondents reported significantly worse HRQOL across both physical and mental health scales than did general and healthy populations. The greatest deficits were in limitations to physical and emotional roles, physical and social functioning, and fatigue. Teenaged patients (ages 15 to 17 years) reported worse physical and work/school functioning than patients 18 to 25 years old. Regression models showed that HRQOL was worse for those in treatment, with current/recent symptoms, or lacking health insurance at any time since diagnosis. In addition, sarcoma patients, Hispanic patients, and those with high school or lower education reported worse physical health. Unmarried patients reported worse mental health. CONCLUSION Results suggest that AYAs with cancer have major decrements in several physical and mental HRQOL domains. Vulnerable subgroups included Hispanic patients, those with less education, and those without health insurance. AYAs also experienced higher levels of fatigue that were influenced by current symptoms and treatment. Future research should explore ways to address poor functioning in this understudied group.

Quality Cancer Care for Adolescents and Young Adults: A Position Statement

PURPOSE This consensus-based position statement on behalf of the LIVESTRONG Young Adult Alliance (Alliance) offers recommendations to enhance oncologic care of adolescent and young adult (AYA) patients with cancer. BACKGROUND In 2005 to 2006, the National Cancer Institute and the Lance Armstrong Foundation jointly sponsored the Adolescent and Young Adult Oncology Progress Review Group (PRG). The PRG report included the directive to develop standards of care for AYA patients with cancer and to disseminate these guidelines to the community. To this end, the Alliance convened a meeting of experts (clinicians, researchers, and advocates) in June 2009 and derived this position statement. RESULTS Quality care for AYAs depends on four critical elements: timely detection; efficient processes for diagnosis, initiation of treatment, and promotion of adherence; access to health care professionals who possess knowledge specific to the biomedical and psychosocial needs of this population; and research that will ultimately derive objective criteria for the development of AYA oncology care guidelines. Achieving quality care for AYAs will require assistance with management of disease and treatment effects; cognizance of the unique psychosocial context for AYA growth and development; assessment of and attention to cognitive, psychiatric, and psychosocial issues; facilitated transition to treatment care; and referral to age-appropriate information and support services. CONCLUSION Dissemination of recommendations stated here will raise awareness of the need for AYA-specific care guidelines and assist providers in the delivery of care that is responsive to the distinct needs of AYAs with cancer.

Health and supportive care needs of young adult cancer patients and survivors

PURPOSEA sizable body of literature exists for young adult survivors of childhood cancer but relatively little is known about the health and supportive care needs of older adolescent and young adult cancer survivors. This project assessed priority health and supportive care needs for young adult patients and off-treatment survivors.METHODS1,088 cancer patients and off-treatment survivors (age 18–39, diagnosed between the ages of 15–35) rank ordered a series of health and supportive care needs. Item rank scores were calculated to prioritize lists of needs for patients receiving treatment and off-treatment survivors, respectively. Differences in rankings based on respondent age, age at diagnosis, years since diagnosis, gender and treatment status (currently receiving treatment or off-treatment) were examined.RESULTSAvailability of state-of-the-art treatment specific to this age-group and having adequate health insurance were the most highly-ranked health care needs. Support from family and friends were the most highly ranked supportive care needs, although younger respondents attributed greater importance to support from family and friends. Older respondents attributed greater importance to availability of age-appropriate information, psychological counseling, and being responsible for one’s own health care and decision-making. Younger respondents reported significantly higher needs for fertility information and services and for scheduling treatments to fit their lifestyles.CONCLUSIONNeeds of adolescents and young adults with cancer vary along a continuum of care, from diagnosis and treatment through survivorship. Findings emphasize the value of age-appropriate resources and peer support. The study offers direction for delivering services to what previously has been an underserved population.