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      The Needs and Experiences of Post-Treatment Adolescent and Young Adult Cancer Survivors

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          Abstract

          (1) Background: Adolescents and young adults (AYAs) who have been diagnosed with and treated for cancer have unique healthcare needs, but more research is needed to inform developmentally targeted cancer care for this population. The purpose of the current analyses was to describe the physical and psychosocial concerns and experiences of AYA cancer survivors during the post-treatment phase. (2) Methods: A national survey was conducted by the Canadian Partnership Against Cancer to evaluate the experiences and unmet needs of cancer survivors (≥18 years) within the first 5 years following cancer treatment. The current analyses were conducted on the AYA survivor population (18–34 years). (3) Results: A total of 575 surveys were completed by AYAs. Of these, 61% were female, 51% were married/partnered, and 52% were 1–3 years post treatment. Approximately three-quarters report their physical or emotional health as good/very good. Overall, 88% reported at least one physical concern [mean of 3.98+2.11 physical concerns (range 0–9)], 90% reported at least one emotional concern [mean of 3.77+1.75 emotional concern (range 0–6)], and 79% reported at least one practical challenge [mean of 2.39+1.28 practical concerns (range 0–5)]. The most common concerns were anxiety/worry about cancer returning (83%), fatigue/tiredness (78%), and depression/loss of interest in daily activities (66%). On average, 43% of those reporting a concern sought help. Common reasons for not seeking help included not wanting to ask, being told that it was normal to feel the way they did, or embarrassment. Of those who did seek help, 37% encountered difficulty obtaining assistance. (4) Conclusions: These results suggest that post-treatment AYA cancer survivors have a high rate and number of physical, psychosocial, and practical concerns and are often not seeking or receiving help to address these. Proactive approaches to characterizing and eliminating barriers to obtaining appropriate care are needed.

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          Most cited references54

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          Anxiety and depression after cancer diagnosis: prevalence rates by cancer type, gender, and age.

          Reported prevalence of emotional distress in cancer patients varies widely across studies. The present study determined prevalence of anxiety and depression (separated for presence of symptoms versus clinical levels) in a large, representative sample of cancer patients after diagnosis. During the years 2004-2009, 10,153 consecutive patients were routinely screened with the Psychosocial Screen for Cancer questionnaire at two major cancer centers. Patients' mean age was 59 years and 45% were men. Across cancer types, 19.0% of patients showed clinical levels of anxiety and another 22.6% had subclinical symptoms. Further, 12.9% of patients reported clinical symptoms of depression and an additional 16.5% described subclinical symptoms. Analyses by cancer type revealed significant differences such that patients with lung, gynecological, or hematological cancer reported the highest levels of distress at the time point of cancer diagnosis. As expected, women showed higher rates of anxiety and depression, and for some cancer types the prevalence was two to three times higher than that seen for men. In some cancer types emotional distress was inversely related to age. Patients younger than 50 and women across all cancer types revealed either subclinical or clinical levels of anxiety in over 50% of cases. Findings describe levels of emotional distress after diagnosis but cannot inform about trajectories of anxiety and depression over time. Given that levels of anxiety and depression varied widely by cancer type, gender, and age, these results inform which cancer patients are most likely in need of psychosocial support. Copyright © 2012 Elsevier B.V. All rights reserved.
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            Health status of adolescent and young adult cancer survivors.

            Adolescents and young adults (AYA) ages 15 to 29 years who are diagnosed with cancer are at risk for long-term morbidity and mortality associated with treatment of their cancer and the cancer itself. In this article, the authors describe the self-reported health status of AYA cancer survivors. The authors examined 2009 data from the Behavioral Risk Factor Surveillance System, including demographic characteristics, risk behaviors, chronic conditions, health status, and health care access, among AYA cancer survivors compared with respondents who had no history of cancer. The authors identified 4054 AYA cancer survivors and 345,592 respondents who had no history of cancer. AYA cancer survivors, compared with respondents who had no history of cancer, reported a significantly higher prevalence of current smoking (26% vs 18%); obesity (31% vs 27%); chronic conditions, including cardiovascular disease (14% vs 7%), hypertension (35% vs 29%), asthma (15% vs 8%), disability (36% vs 18%), and poor mental health (20% vs 10%) and physical health (24% vs 10%); and not receiving medical care because of cost (24% vs 15%). AYA cancer survivors commonly reported adverse behavioral, medical, and health care access characteristics that may lead to poor long-term medical and psychosocial outcomes. Increased adherence to established follow-up guidelines may lead to improved health among AYA cancer survivors. Copyright © 2012 American Cancer Society.
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              Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study.

              We described unmet information and service needs of adolescent and young adult (AYA) cancer survivors (15-39 years of age) and identified sociodemographic and health-related factors associated with these unmet needs. We studied 523 AYAs recruited from seven population-based cancer registries, diagnosed with acute lymphocytic leukemia, Hodgkin's lymphoma, non-Hodgkin's lymphoma, germ cell cancer, or sarcoma in 2007-2008. Participants completed surveys a median of 11 months from diagnosis. Multivariable logistic regression analyses were used to estimate associations between unmet (information and service) needs and sociodemographic and health-related factors. More than half of AYAs had unmet information needs relating to their cancer returning and cancer treatments. AYAs needing services, but not receiving them, ranged from 29 % for in-home nursing to 75 % for a support group. The majority of AYAs who needed a pain management expert, physical/occupational therapist, mental health worker, or financial advice on paying for health care did not receive services. In multivariable analyses, older participants, men, participants of non-white race/ethnicity, and participants who reported less than excellent general health or fair/poor quality of care were more likely to report unmet information needs. Factors associated with both unmet service and information needs included physical health or emotional problems interfering with social activities or having ≥3 physical treatment-related symptoms. Recently diagnosed AYA cancer survivors have substantial unmet information needs varying by demographic and health-related factors. We identified subgroups of AYA cancer survivors with high unmet needs that can be targeted for interventions and referrals.
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                Author and article information

                Journal
                J Clin Med
                J Clin Med
                jcm
                Journal of Clinical Medicine
                MDPI
                2077-0383
                13 May 2020
                May 2020
                : 9
                : 5
                : 1444
                Affiliations
                [1 ]Cancer Rehabilitation and Survivorship, Princess Margaret Cancer Centre, Toronto, ON M5G 2C4, Canada; bongardj@ 123456mcmaster.ca
                [2 ]Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON M5T 1P8, Canada; marg.i.fitch@ 123456gmail.com
                [3 ]Department of Biostatistics, Princess Margaret Cancer Centre, Toronto, ON M5G 2M9, Canada; Manjula.Maganti@ 123456uhn.ca
                [4 ]Division of Hematology/Oncology, SickKids Hospital Toronto, Ontario, ON M5G 1X8, Canada; abha.gupta@ 123456sickkids.ca
                [5 ]Adolescent & Young Adult Program, Princess Margaret Cancer Centre, Toronto, ON M5G 2M9, Canada
                [6 ]Department of Supportive Care, Princess Margaret Cancer Centre, Toronto, ON M5G 2M9, Canada chana.korenblum@ 123456sickkids.ca (C.K.)
                [7 ]Division of Adolescent Medicine, Department of Paediatrics, SickKids Hospital, Toronto, ON M5G 1X8, Canada
                Author notes
                [* ]Correspondence: jennifer.jones@ 123456uhn.ca ; Tel.: +1-416-581-8603
                Article
                jcm-09-01444
                10.3390/jcm9051444
                7291222
                32413981
                1bc6a991-9f89-49ed-b700-f66b4d6633aa
                © 2020 by the authors.

                Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license ( http://creativecommons.org/licenses/by/4.0/).

                History
                : 03 April 2020
                : 05 May 2020
                Categories
                Article

                cancer survivorship,adolescent and young adult,care transitions,follow-up care

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