Norma Mammone D'Agostino

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.

Early aging in adult survivors of childhood medulloblastoma: long-term neurocognitive, functional, and physical outcomes.

Treatment for medulloblastoma during childhood impairs neurocognitive function in survivors. While those diagnosed at younger ages are most vulnerable, little is known about the long-term neurocognitive, functional, and physical outcomes in survivors as they approach middle age. In this retrospective cohort study, we assessed 20 adults who were treated with surgery and radiotherapy for medulloblastoma during childhood (median age at assessment, 21.9 years [range, 18-47 years]; median time since diagnosis, 15.5 years [range, 6.5-42.2 years]). Nine patients also underwent chemotherapy. Cross-sectional analyses of current neurocognitive, functional, and physical status were conducted. Data from prior neuropsychological assessments were available for 18 subjects; longitudinal analyses were used to model individual change over time for those subjects. The group was well below average across multiple neurocognitive domains, and 90% had required accommodations at school for learning disorders. Longer time since diagnosis, but not age at diagnosis, was associated with continued decline in working memory, a common sign of aging. Younger age at diagnosis was associated with lower intelligence quotient and academic achievement scores, even many years after treatment had been completed. The most common health complications in survivors were hearing impairment, second cancers, diabetes, hypertension, and endocrine deficiencies. Adult survivors of childhood medulloblastoma exhibit signs of early aging regardless of how young they were at diagnosis. As survival rates for brain tumors continue to improve, these neurocognitive and physical sequelae may become evident in survivors diagnosed at different ages across the lifespan. It will become increasingly important to identify factors that contribute to risk and resilience in this growing population.

Bereaved parents' perspectives on their needs

OBJECTIVE The loss of a child can be traumatic for parents, given the profound bond established with the deceased child. Parental bereavement and the need for bereavement services are not well understood. This study examined parental perspectives regarding bereavement services from a pediatric oncology treating center. METHODS A 2-h focus group of seven parents, audiotaped and transcribed verbatim, was conducted by two facilitators using open-ended questions to generate discussion regarding their views of what services were or would be helpful during early bereavement. RESULTS Parents perceived flexible and continuous bereavement services from the treating hospital as a necessary transition to community services. Talking to other parents with similar experiences and maintaining contact with staff at the treating hospital were considered critical in their healing after the loss. SIGNIFICANCE OF RESULTS Transitional multimodality bereavement services offered by the treating hospital will improve the quality of life of bereaved families.

Patterns of Parental Bereavement following the Loss of a Child and Related Factors

This study investigated the patterns of parental bereavement in 20 parents who have lost a child to cancer, congenital heart disease, meningitis, or drowning in the last 19 months, using semi-structured interviews and standardized questionnaires of depression and grief. Qualitative content analysis of interviews identified three bereavement patterns: The majority of parents (65%) presented uncomplicated, Integrated Grief, five mothers were Consumed by Grief, and one mother and one father expressed Minimal Grief. Quotes from parents exemplified these patterns. Parental gender, symptoms of depression, and pre-death relationship between parents and their deceased child differentially related to these patterns. Having surviving children, social support, and being active appeared to help to integrate grief into daily life. These findings illustrate differential patterns of parental bereavement and related factors, information that has important implications for identifying at-risk parents for complicated bereavement.

Bereavement Experiences of Mothers and Fathers Over Time After the Death of a Child Due to Cancer

The authors investigated longitudinally bereavement in mothers and fathers whose children died of cancer. Thirty-one parents were interviewed 6 and 18 months post-death. Analyses revealed parental differences and changes over time: (a) employment—fathers were more work-focused; (b) grief reactions—mothers expressed more intense grief reactions that lessened over time; (c) coping—mothers were more child-focused, fathers more task-focused; (d) relationship with bereaved siblings—mothers actively nurtured relationship with child; (e) spousal relationship—parents reported diversity in their relationship over time; and (f) relationship with extended family—mothers maintained contact with extended family more. Findings illustrate parental differences in bereavement over time that might be partly socially determined. These findings emphasize the need for tailoring bereavement support services in the family.

Health-related quality of life and enrollment in phase 1 trials in children with incurable cancer.

OBJECTIVES To investigate health-related quality of life (HRQOL) in children eligible for Phase 1 trials and the reasons why families consider participating in these trials. METHODS Individual, semistructured interviews were conducted with parents (seven mothers, two fathers) and three children, after a child was invited to participate in a clinical trial. Information regarding disease and treatment progression, daily life, and decision making about experimental treatments was elicited. Interviews were recorded, transcribed, and coded for themes. RESULTS HRQOL themes were grouped into four main domains: physical, psychological, social, and spiritual. Minimal physical restrictions, maintaining normalcy and control, information sharing, and having hope for life seemed to be critical HRQOL components. Hope for a cure and prolonging the childs life were the main reasons for enrolling in Phase 1 trials. CONCLUSIONS Normalcy and control are key end-of-life HRQOL components, and hope for life is a main reason for participating in Phase 1 trials.

Long-term neurocognitive outcomes in young adult survivors of childhood acute lymphoblastic leukemia.

Five-year survival rates of childhood acute lymphoblastic leukemia (ALL) exceed 80% due to central nervous system-directed treatment including cranial radiation (CRT) and chemotherapy. However, these treatments are associated with neurocognitive compromise, the extent of which is correlated with higher dose and younger age at treatment. The aims of this study were to explore long-term neurocognitive outcomes in adult survivors of childhood ALL, and to identify measures sensitive to neurotoxicity in long-term survivors. We examined 24 adults who received 18 Gy CRT and chemotherapy for treatment of ALL between ages 2 and 15 years (median, 5.5). Time since diagnosis ranged from 6 to 26 years (median, 16.6). Younger age at diagnosis and longer time since diagnosis were associated with lower scores on a computerized battery that requires speed and accuracy across a number of domains (MicroCog), and other standardized neurocognitive tests. When compared with population norms, MicroCog indices were below average in survivors diagnosed with ALL before age 5, but only the reasoning/calculation index was below average in survivors diagnosed with ALL after age 5. In contrast, intelligence quotient (IQ) scores were average. In addition to confirming earlier studies showing that younger children are more vulnerable to treatment-related neurotoxicity, here we show that deficits exist many years post treatment even with a relatively lower dose of CRT, and that these deficits are especially evident on tasks involving rapid processing of information.

Developmental Differences in Psychological Adjustment and Health-Related Quality of Life in Pediatric Cancer Patients

The aims of this study were to investigate: (a) age differences in psychological adjustment (PA) and health-related quality of life (HRQOL) in pediatric cancer patients, and (b) identify predictors of PA and HRQOL. The sample included preschool, school age, and adolescent patients. Data were obtained at 3 (n = 69), 9 (n = 47), and 15 (n = 44) months after diagnosis, using standardized measures completed by the mother. Measures assessed the childrens psychological adjustment (PA), health-related quality of life (HRQOL), temperament and maternal psychological adjustment. Age at diagnosis significantly affected both PA and HRQOL. At 3 months post-diagnosis, preschoolers had more externalizing behavior problems than did adolescents. Preschoolers had better HRQOL than adolescents at all 3 assessments. Maternal adjustment and childs temperament scores were the best predictors of PA; age was the best predictor of HRQOL. The results of this study suggest that preschoolers with cancer are at risk for behavior problems and adolescents are at risk for poor HRQOL. The results also highlight the importance of multi-factor models in predicting childrens PA and HRQOL.

Trajectory of parental hope when a child has difficult-to-treat cancer: a prospective qualitative study

This prospective and longitudinal study was designed to further our understanding of parental hope when a child is being treated for a malignancy resistant to treatment over three time points during the first year after diagnosis using a qualitative approach to inquiry.

Supporting adolescents and young adults with cancer through transitions: position statement from the Canadian Task Force on Adolescents and Young Adults with cancer.

Objective: This position statement from the Canadian Task Force on Adolescents and Young Adults with cancer aims to (1) conceptualize the numerous transition experiences encountered by adolescents and young adults (AYA) with cancer; and (2) provide recommendations on how to help the AYA regain a sense of control over their lives as they adjust to these transition experiences. Methods: We reviewed and synthesized a heterogeneous sample of studies and recommendations, ranging from well-designed case-controlled investigations to opinions of respected authorities based on clinical experience, and reports of expert committees. Results: We describe the key factors that have an impact on different transitions during the cancer journey, and the need for developmentally appropriate services for AYA with cancer that consider both the system issues and individual transition issues. Our recommendations are not intended to be prescriptive, but they are broad enough to be applicable in different types of settings (eg, family doctor, cancer center, specialty service) and systems beyond health care (eg, school system, social system). Conclusions: The Task Force urges health care providers, parents, and AYA with cancer to work together in planning and implementing strategies that will enable individuals to navigate the transitions they encounter along the cancer journey successfully, and strive for meaningful participation in life situations, achieving their potential as fully functional members of society.