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      A Critical Review of the Impact of Sarcoma on Psychosocial Wellbeing

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          Abstract

          Background

          Previous reviews of outcomes in specific sarcoma populations suggest patients have poor quality of life. In most of these reviews, there is a predominant focus on physical function rather than psychosocial outcome. The aim of this review was to describe the psychosocial impact of diagnosis and treatment on patients with all types of sarcoma.

          Methods

          Searches were conducted through six electronic databases for publications of any study design using a validated patient-reported outcome measure reporting the psychosocial impact in this population.

          Results

          Eighty-two studies fulfilled the inclusion criteria. Most (65%) were assessed of being of reasonable quality. The most common aspect of psychosocial wellbeing measured was quality of life (80%). Due to the heterogeneity of methods, outcomes, and populations, it was not possible to make definitive conclusions. It seems there is an improvement in the physical aspects of quality of life over time but not in psychosocial function or mental health. There was no change in mental health scores, but patients reported an improvement in adjusting to normal life. There are no differences according to the type of surgery patients receive, and psychosocial outcomes tend to be poorer than the general population. There is no consistency in identifying the factors that predict/influence psychosocial wellbeing.

          Conclusion

          The published literature does not provide a clear understanding of the impact of sarcoma diagnosis and treatment on psychosocial wellbeing. Instead, the review demonstrates a need for well-designed studies in this area and a more consistent approach to the measurement of patient-reported outcomes, which include psychosocial domains. Recommendations for future research have been proposed.

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

          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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            Systematic review of the health-related quality of life issues facing adolescents and young adults with cancer

            Purpose For adolescents and young adults (AYAs), the impact of a cancer diagnosis and subsequent treatment is likely to be distinct from other age groups given the unique and complex psychosocial challenges of this developmental phase. In this review of the literature, we report the health-related quality of life (HRQoL) issues experienced by AYAs diagnosed with cancer and undergoing treatment. Methods MEDLINE, EMBASE, CINAHL, PsychINFO and the Cochrane Library Databases were searched for publications reporting HRQoL of AYAs. Issues generated from interviews with AYAs or from responses to patient reported outcome measures (PROMs) were extracted. Results 166 papers were reviewed in full and comprised 72 papers covering 69 primary studies, 49 measurement development or evaluation papers and 45 reviews. Of the 69 studies reviewed, 11 (16%) used interviews to elicit AYAs’ descriptions of HRQoL issues. The majority of the PROMs used in the studies represent adaptations of paediatric or adult measures. HRQoL issues were organised into the following categories: physical, cognitive, restricted activities, relationships with others, fertility, emotions, body image and spirituality/outlook on life. Conclusion The HRQoL issues presented within this review are likely to be informative to health care professionals and AYAs. The extensive list of issues suggests that the impact of a cancer diagnosis and treatment during adolescence and young adulthood is widespread and reflects the complexities of this developmental phase.
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              The experience of living with a chronic illness during adolescence: a critical review of the literature.

              To identify and critique literature on the adolescent lived experience of chronic illness; describe the lived experience; and to make recommendations for clinical practice. Young people with chronic illness have the same developmental issues as those who are healthy. However, development can be disrupted by treatment and repeated hospitalisation. While the physical consequences of chronic illness on development have been established, the subjective personal experience is less known. Literature review. Electronic databases and hand searches were made of the literature published between January 1990-September 2007. Literature was eligible for inclusion if it involved adolescents between 10-19 years, and published in English and used qualitative methods of data collection. Methodological quality was assessed using the criteria described by Cesario et al. [Journal of Obstetrics, Gynaecology and Neonatal Nursing 31 (2002) 31]. Twenty studies were identified involving young people with a wide variety of chronic illnesses. The study quality was variable, however, generally the majority was assessed as being good or fair. Seven common themes were found between the identified studies: developing and maintaining friendships; being normal/getting on with life; the importance of family; attitude to treatment; experiences of school; relationship with the healthcare professionals; and the future. As there was commonality in themes between studies strategies to lessen the burden of chronic illness during adolescence do not necessarily need to be disease specific. Nurses need to focus on treating the young person rather than their illness.
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                Author and article information

                Contributors
                Journal
                Sarcoma
                Sarcoma
                SARCOMA
                Sarcoma
                Hindawi
                1357-714X
                1369-1643
                2019
                17 February 2019
                : 2019
                : 9730867
                Affiliations
                1School of Psychology, Queens University Belfast, Belfast BT7 1NN, UK
                2Cancer Division, University College London Hospitals NHS Foundation Trust, London NW1 2PG, UK
                3Nursing Directorate, Imperial College Healthcare NHS Trust, Charing Cross Hospital, London W6 8RF, UK
                4Sarcoma Unit, The Royal National Orthopaedic Hospital NHS Trust, Stanmore, Middlesex HA7 4LP, UK
                Author notes

                Academic Editor: Valerae O. Lewis

                Author information
                http://orcid.org/0000-0002-0853-0925
                Article
                10.1155/2019/9730867
                6397984
                30911268
                c41b64b2-a24c-4524-b3e2-592d349b2acf
                Copyright © 2019 Lesley Storey et al.

                This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 2 November 2018
                : 9 January 2019
                : 15 January 2019
                Funding
                Funded by: Sarcoma UK
                Award ID: SUK102.2016
                Funded by: National Institute for Health Research
                Funded by: Teenage Cancer Trust
                Funded by: Imperial Biomedical Research Centre (BRC)
                Categories
                Review Article

                Oncology & Radiotherapy
                Oncology & Radiotherapy

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