Perceived impact of cancer among adolescents and young adults: Relationship with health-related quality of life and distress.

OBJECTIVE: To examine whether perceptions of the impact of cancer are related to health-related quality of life (HRQoL) and psychological distress among survivors of cancer in adolescence and young adulthood (AYA). METHODS: One hundred seventy-three AYA cancer survivors (aged 18-35 and 15-29 years at time of diagnosis) completed a mailed survey assessing impact of cancer (IOC-AYA), HRQoL (SF-36), and distress (BSI-18). Hierarchical linear regression models analyzed the independent effects of perceived impacts of cancer on HRQoL and distress after controlling for clinical and sociodemographic characteristics. Multivariate analyses also examined the extent to which positive and negative perceptions attenuated the effects of control variables on HRQoL and distress. RESULTS: Being unemployed or not in school, and self-reported health problems were significantly associated with worse physical HRQoL. Mental HRQoL and psychological distress appeared as a function of reporting both positive and negative impacts of cancer; mental health outcomes were better in AYAs reporting more positive and less negative impact of cancer in their lives. Perceived impact of cancer, in both positive and negative ways, attenuated the effects of sociodemographic and clinical factors on mental HRQoL and psychological distress. CONCLUSION: Results suggest that mental HRQoL and psychological distress, but not physical HRQoL, are a function of survivors' perceptions of how cancer has affected them and continues to affect them in both positive and negative ways. Findings suggest that opportunities for AYA cancer survivors to reframe or better understand the context of cancer in their lives may result in improved mental health outcomes.

Advocacy skills training for young adult cancer survivors: the Young Adult Survivors Conference at Camp Mak-a-Dream.

GOALS OF THE WORK: This manuscript reports on the design, implementation, and evaluation of the Young Adult Survivor Conference (YASC)-a 4-day retreat designed to provide an educational and support experience for cancer survivors diagnosed as children, adolescents, and young adults. The goals of the program were to address issues of survivorship, provide cancer education and tools for self-advocacy, and build bridges of support among young adult cancer survivors who may be experiencing similar journeys through life. THE PROGRAM: YASC was designed to offer advocacy skills specific to participants' needs. Workshops focused on understanding late effects, mentoring and communication, tips for starting peer support programs and networks, and opportunities for offering public testimony and involvement in public policy. EVALUATION: Program evaluation indicated that participants achieved personal goals and expectations for having fun, meeting other survivors, understanding more about their cancer and potential late effects, and learning about how to tell their story so that it will help others. CONCLUSIONS: Involvement with peers who have shared a similar experience provided participants an opportunity to address areas of concern such as coping with uncertainty, dependency vs autonomy, social exclusion, body image, intimacy, sexuality and fertility, and career options. Participation in programs such as the YASC offers young survivors opportunities for life experiences that may promote successful achievement of age-appropriate developmental tasks.

A psychometric analysis of the Quality of Life-Cancer Survivors (QOL-CS) in survivors of childhood cancer.

Given the increasing interest in quality of life research in cancer survivorship, psychometric properties of the Quality of Life-Cancer Survivors (QOL-CS) were explored in a group of childhood cancer survivors. The QOL-CS is a 41-item visual analog scale composed of four multi-item sub-scales (physical well-being, psychological well-being, social well-being, spiritual well-being) and two sub-components (fears, distress). This instrument was incorporated in a mailed survey completed by 177 respondents. The underlying factor structure and internal reliability of the instrument were explored. A preliminary assessment of the external validity of the factor structure was undertaken. Results of a factor analysis were theoretically consistent with elements assessed in the QOL-CS, although misclassification of several items was noted and discussed. Internal-consistency reliability was very good (Cronbach's alpha = 0.80-0.89) for five of the six factors. Moderate (0.30 < r < 0.45) to high (r > 0.60) concurrent validity was observed for four factors. Discriminant validity was noted across groups defined by health and social status variables. Psychometric analysis indicated that the instrument measured distinct and relevant domains of quality of life for childhood cancer survivors, but in its current form does not appear to be an optimal measure of quality of life in this population.

Health-related worries, self-image, and life outlooks of long-term survivors of childhood cancer.

This article poses three questions: what do childhood cancer survivors worry about? What characteristics prompt some to worry more and others less? What effect do worries have on survivors' self-image and life outlooks? Data from 303 survivors of childhood cancer demonstrated significant relationships among worries, "objective" factors like physical after-effects or relapse, and survivors' self-images and life outlooks. However, findings also indicated that subjectively experienced worries, perceptions about one's cancer status, age at diagnosis and gender were more strongly associated with self-image and life outlook. Psychosocial interventions andfuture research are suggested.

Managed care: the new context for social work in health care--implications for survivors of childhood cancer and their families.

The changing organization of health care requires social workers to deal with a variety of new demands, and in some cases alter their traditional professional practice. Using the specific case of childhood cancer as a framework (or set of case examples), this paper identifies key issues faced by oncology social workers in hospital settings under managed care and ways they have responded to them. The general content involves pressures on oncology social workers to adapt to the new corporate culture and ideals fundamental to managed care at the same time that the expressed psychosocial needs and desires of survivors of childhood cancer necessitate increased attention and expansion of service provision. Caught in conflicts that challenge them to reconcile simultaneous commitments to client service/empowerment and institutional conformity, social workers must establish a more powerful position to negotiate institutional and public policies that uphold the primacy of a core Social Work ethic: A commitment to client-centered service.

Cancer survivor identity and quality of life.

PURPOSE: The purpose of this article is to propose a framework for enhancing an understanding of quality of life among cancer survivors that takes into account individuals' subjective experiences and attributions of self as they relate to their own experience with cancer. OVERVIEW: This review of a small yet burgeoning cancer survivorship literature posits that there is room to expand the theoretical context for understanding cancer and its impact on quality of life by assuming that the experience of cancer involves changes in social roles and identity. In turn, changes in the way cancer survivors see themselves in relation to the world, including the ability to carry out roles and responsibilities, may affect quality of life. This perspective suggests that a cancer diagnosis initiates a survival trajectory and a social role that extends over the remainder of one's life, regardless of life expectancy. CLINICAL IMPLICATIONS: Expanding the understanding of quality of life and the factors that contribute to it should help subsequent investigations of who might benefit from which psychosocial support interventions provided when (i.e., during early diagnostic stage, treatment stage, or both or in the long term). Equipped with this understanding, clinicians and agencies providing services to cancer survivors and their families can develop appropriate supportive interventions that facilitate and enhance quality of life.