Psychometric evaluation of the Impact of Cancer (IOC-CS) scale for young adult survivors of childhood cancer.

INTRODUCTION: Psychosocial outcomes derived from standardized and disease-specific measures are often used in pediatric oncology; however, the reliability, validity and utility of these instruments in adult survivors of childhood cancer have yet to be established. PURPOSE: To develop and evaluate a new instrument that measures aspects of long-term survivorship not measured by existing tools. METHODS: A new candidate instrument--the Impact of Cancer for childhood cancer survivors (IOC-CS)--was administered to childhood cancer survivors aged 18-39 who were 21 years of age or younger when diagnosed with cancer. Psychometric properties of newly derived scales were assessed. RESULTS: Factor analyses of items derived eight new and specific subscales: Life Challenges, Body/Health, Talking With Parents, Personal Growth, Thinking/Memory Problems, Health Literacy, Socializing and Financial Problems. Internal consistency measurements for these subscales ranged from 0.70 to 0.86. Expected associations within and among the IOC-CS subscales and standardized measures of health-related quality of life (HRQOL) were observed, as were some unexpected findings. CONCLUSION: Psychometric analyses indicated that this initial version of the IOC-CS measures distinct and relevant constructs for young adult survivors of childhood cancer. Future work is necessary to confirm the responsiveness and further validate the instrument in multiple and representative samples.

To foster healing among adolescents and young adults with cancer: what helps? What hurts?

PURPOSE: The physical and emotional well-being of adolescents and young adults with cancer (AYA) rests on the ability of all concerned to promote helpful forms of care and reduce hurtful forms. The purpose of this study was to identify aspects of behavior that may promote or inhibit healthy psychosocial adjustment for this age-defined population. METHOD: Seventeen young adult cancer survivors participated in focus groups to discuss what people said or did that they found helpful or hurtful. Inductive and deductive techniques of coding and analysis of these qualitative data were performed. RESULTS: Survivors reported being the recipients of positive and negative communications and behaviors of an informational, practical, interpersonal, and/or emotional character. Most common were comments and actions in the interpersonal realm. More helpful than hurtful comments were reported, except in the informational category, where the "bad news" about cancer and the style of information-sharing created hurt. CONCLUSION: How people communicate information, tasks, and feelings to AYA patients and survivors affects how they experience their illness and think about themselves and their current and future situations. All parties-doctors, other medical providers, family members, and friends-need to attend to the manner as well as content of their communications and interactions with AYAs and to the social and emotional context within which communication and interaction occurs. Specific recommendations for the care of AYA cancer patients are offered, emphasizing the importance of attending to the cognitive capabilities and unique developmental challenges associated with adolescence and young adulthood.

Long term survivors of childhood cancer: cure and care. The Erice statement.

The number of subjects that have successfully completed treatment for a cancer diagnosed during childhood and are entering adulthood is increasing over time. Members of the International Berlin-Frankfurt-Munster (I-BFM) Early and Late Toxicity Educational Committee (ELTEC) invited 45 paediatric cancer experts (representing oncologists, psychologists, nurses, epidemiologists, parents, and survivors) from 13 European countries (with five additional experts from North America) to Erice, Sicily (from October 27 to 29, 2006) to discuss the circumstances in which the word 'cure' should be used when speaking about children with cancer, and when and why continuing follow-up and care may be required. The objective of the gathering was to generate from the personal and professional experience of the participants an overview statement of the group's philosophy of cure and care of survivors of childhood cancer. The ten points reflect what the group considers essential in the survivors' cure and care.

Thematic evidence of psychosocial thriving in childhood cancer survivors.

Advances in medical treatment for childhood cancer have resulted in dramatically increased survival rates and a growing population of long-term survivors. Until recently, researchers reported primarily negative psychosocial sequelae of childhood cancer. Emergent conceptual frameworks propose that the assumption of pathology or long-term deficits in functioning might obscure an understanding of the full range of outcomes. Using qualitative interview data (N = 50), the authors explore how cancer can lead to positive psychosocial outcomes, including thriving. The findings suggest that processes of coping, meaning making, and psychospiritual growth are intimately related to long-term psychosocial well-being. The results suggest that in the aftermath of a trauma such as childhood cancer, many outcomes are possible, including thriving.

Fathers' perspectives on the treatment for pediatric hematology: extending the findings.

There is scant research available about how fathers cope with their children receiving difficult treatment protocols for diseases such as childhood acute lymphoblastic leukemia (ALL). The present discussion contributes to this area with findings on the paternal experience of treatment for pediatric ALL collected from the families in a longitudinal study conducted at Royal Children's Hospital and the Mater Children's Hospital, Brisbane, Queensland. These findings emphasize the emotional shock and pain fathers experience in the early stages of the treatment process for children with leukemia. Their emotional responses run the gamut from engagement in the treatment process to withdrawal, from crying to taking "time out" to experiencing and expressing anger at their (and their child's) fate. In dealing with their child's illness over time fathers struggle with accepting the situation and attempting to restore some semblance of normality to their own and their families' lives.

Quality of life in childhood cancer survivors.

The successful treatment for children with cancer has greatly increased the survival rates for these young people compared to children diagnosed with cancer 30 years ago. These new medical realities direct attention to the psychosocial consequences of successful treatment and subsequent survival. In this paper, quality of life in 176 childhood cancer survivors (age 16-28) is assessed using a survey instrument designed for cancer survivors. In addition, the instrument is evaluated for its utility with this population. Survivors indicate that symptoms often associated with treatment are at a minimum but that other long-term effects like fatigue, aches, and pain negatively impact quality of life. They rate themselves high on happiness, feeling useful, life satisfaction and their ability to cope as a result of having had cancer but their hopefulness is tempered by uncertainty. Whereas the salience of spiritual and religious activities appears to be low, having a sense of purpose in life and perceiving positive changes as a result of cancer are associated with positive quality of life. A lower valence of physical concerns reflects the vitality and positive life outlook of a young population.