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      Quality of life in adolescent and young adult cancer patients: a systematic review of the literature

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          Abstract

          Introduction

          Adolescent and young adult (AYA) cancer survivors experience many unique challenges and quality of life (QoL) effects that persist beyond cancer diagnosis and treatment. Due to continuous improvements in technology and cancer treatments resulting in improved survival rates, the identification of late effects, survivorship issues, and QoL is moving to the forefront of cancer research. The goal of this systematic review was to identify key psychosocial factors impacting QoL in AYA oncology populations.

          Methods

          A systematic review of the literature was conducted using combinations of these phrases or keywords: “adolescent and young adult or AYA” AND “health outcomes OR quality of life OR psychology” AND “neoplasm OR cancer OR oncology”. A total of 35 articles were included in this review. Studies were classified into two categories: AYA perceptions and stakeholder perceptions.

          Results

          AYA cancer survivors were more likely to have “worse” or impaired QoL compared with the general population, regardless of other demographic factors. AYAs described both positive and negatives experiences with their medical care, the educational information received, and the supportive care services. Although health care professionals were likely to underestimate or misjudge the health preferences and support needs of AYAs, these perceptions varied across disciplines and levels of experience.

          Conclusion

          The literature is lacking in sufficient evidence-based interventions to improve QoL in AYA cancer populations. Further, the tools to adequately measure QoL in this population are also unsatisfactory. The literature, however, consistently shows agreement regarding the unique needs of this population, indicating a trend toward health care standardization within age ranges or life stages. We suggest the need for AYA-specific programs in health care institutions that comprise a multidisciplinary team that addresses all the unique medical and QoL needs of AYAs.

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          Most cited references60

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          Emerging adulthood. A theory of development from the late teens through the twenties.

          J Arnett (2000)
          Emerging adulthood is proposed as a new conception of development for the period from the late teens through the twenties, with a focus on ages 18-25. A theoretical background is presented. Then evidence is provided to support the idea that emerging adulthood is a distinct period demographically, subjectively, and in terms of identity explorations. How emerging adulthood differs from adolescence and young adulthood is explained. Finally, a cultural context for the idea of emerging adulthood is outlined, and it is specified that emerging adulthood exists only in cultures that allow young people a prolonged period of independent role exploration during the late teens and twenties.
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            The Patient-Centered Outcomes Research Institute (PCORI) national priorities for research and initial research agenda.

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              Is Open Access

              MYCN and the epigenome

              It is well known that Neuroblastoma (NB) patients whose tumors have an undifferentiated histology and a transcriptome enriched in cell cycle genes have a worse prognosis. This contrasts with the good prognoses of patients whose tumors have histologic evidence of differentiation and a transcriptome enriched in differentiation genes. Tumor cell lines from poor prognosis, high-risk patients contain a number of genetic alterations, including amplification of MYCN, 1pLOH, and unbalanced 11q or gains of Chr 17 and 7, and exhibit uncontrolled growth and an undifferentiated phenotype in in vitro culture. Yet treatment of such NB cell lines with retinoic acid results in growth control and induction of differentiation. This indicates that the signaling pathways that regulate cell growth and differentiation are not functionally lost but dysregulated. Agents such as retinoic acid normalize the signaling pathways and impose growth control and induction of differentiation. Recent studies in embryonic stem cells indicate that polycomb repressor complex proteins (PRC1 and PRC2) play a major role in regulating stem cell lineage specification and coordinating the shift from a transcriptome that supports self-renewal or growth to one that specifies lineage and controls growth. We have shown that in NB, the PRC2 complex is elevated in undifferentiated NB tumors and functions to suppress a number of tumor suppressor genes. This study will review the role of MYC genes in regulating the epigenome in normal development and explore how this role may be altered during tumorigenesis.
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                Author and article information

                Journal
                Patient Relat Outcome Meas
                Patient Relat Outcome Meas
                Patient Related Outcome Measures
                Patient Related Outcome Measures
                Dove Medical Press
                1179-271X
                2015
                17 February 2015
                : 6
                : 19-51
                Affiliations
                [1 ]H Lee Moffitt Cancer Center and Research Institute, Department of Health Outcomes and Behavior, Tampa, FL, USA
                [2 ]Morsani College of Medicine, University of South Florida, Tampa, FL, USA
                [3 ]H Lee Moffitt Cancer Center and Research Institute, Adolescent Young Adult Oncology Program, Tampa, FL, USA
                [4 ]Faculty of Psychology and Educational Sciences, University of Coimbra, Coimbra, Portugal
                [5 ]H Lee Moffitt Cancer Center and Research Institute, Department of Sarcoma, Tampa, FL, USA
                Author notes
                Correspondence: Gwendolyn P Quinn, Health Outcomes and Behavior, 12902 Magnolia Drive, MRC CANCONT, Tampa, FL 33612, USA, Tel +1 813 745 1359, Fax +1 813 449 8019, Email gwen.quinn@ 123456moffitt.org
                Article
                prom-6-019
                10.2147/PROM.S51658
                4337625
                25733941
                f388721a-94ca-4e67-a6e4-34909178d8d8
                © 2015 Quinn et al. This work is published by Dove Medical Press Limited, and licensed under Creative Commons Attribution – Non Commercial (unported, v3.0) License

                The full terms of the License are available at http://creativecommons.org/licenses/by-nc/3.0/. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed.

                History
                Categories
                Review

                Medicine
                adolescent and young adult,oncology,quality of life
                Medicine
                adolescent and young adult, oncology, quality of life

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