Cancers

Research

Jump to: Review, Other

12 pages, 883 KiB

Open AccessArticle

Fear of Recurrence in Young Adult Cancer Patients—A Network Analysis

by Diana Richter, Katharina Clever, Anja Mehnert-Theuerkauf and Antje Schönfelder

Cancers 2022, 14(9), 2092; https://doi.org/10.3390/cancers14092092 - 22 Apr 2022

Cited by 9 | Viewed by 2464

Abstract

Due to the high survival rates of many young cancer patients and a high risk of second tumors, fear of cancer recurrence (FCR) can cause serious impairment for adolescent and young adult (AYA) cancer patients. The aim of this study is to analyze [...] Read more.

Due to the high survival rates of many young cancer patients and a high risk of second tumors, fear of cancer recurrence (FCR) can cause serious impairment for adolescent and young adult (AYA) cancer patients. The aim of this study is to analyze the structure of the Fear of Disease Progression Questionnaire (FoP-Q-12) to better understand the construct of FCR. We performed a cross-sectional survey on a sample of AYA patients aged 15–39 years with different tumor entities. FCR was measured using the FoP-Q-12, and a network analysis was conducted to examine the relationship of FCR symptoms. The importance of individual items in the network was determined using centrality analyses. A total of 247 AYA patients (81.8% female, median age 31.0 years) participated in the study. The mean FCR score in the sample was 35.9 (SD = 9.9). The majority of patients reported having high FCR (59.5%), according to the established cut-off. The two questionnaire items with the strongest association related to fears about work, and the most central symptom was the fear of serious medical interventions. The centrality of emotional issues in the sample indicates that these symptoms should be prioritized in the development of interventions targeting FCR. Further research should address this topic with larger samples of patients in other age groups and in longitudinal studies. Full article

(This article belongs to the Special Issue Adolescent and Young Adult Oncology)

► Show Figures

Figure 1

19 pages, 298 KiB

Open AccessArticle

Psychosocial Needs and Preferences for Care among Adolescent and Young Adult Cancer Patients (Ages 15–39): A Qualitative Study

by Viswatej Avutu, Kathleen A. Lynch, Marie E. Barnett, Jacqueline A. Vera, Julia L. Glade Bender, William D. Tap and Thomas M. Atkinson

Cancers 2022, 14(3), 710; https://doi.org/10.3390/cancers14030710 - 29 Jan 2022

Cited by 14 | Viewed by 3262

Abstract

Adolescents and young adults (AYAs) require a multidisciplinary approach to cancer care due to their complex biopsychosocial situations and varied developmental maturity. Currently, age and diagnosis determine referral to pediatric or adult oncology, with differing treatment paradigms and service utilization patterns, contributing to [...] Read more.

Adolescents and young adults (AYAs) require a multidisciplinary approach to cancer care due to their complex biopsychosocial situations and varied developmental maturity. Currently, age and diagnosis determine referral to pediatric or adult oncology, with differing treatment paradigms and service utilization patterns, contributing to suboptimal improvements in outcomes. Understanding the unique perspectives of AYAs is essential to designing patient-centered AYA services. Thus, we conducted six focus groups with AYAs (n = 25) treated by medical or pediatric oncologists to evaluate: (1) the unique experiences of cancer care as an AYA; (2) AYA-specific information needs and communication preferences; and (3) recommendations for service provision, delivery and accommodations for AYAs. Transcripts were analyzed using inductive thematic content analysis and identified six major themes to inform clinically-actionable recommendations and the development of a patient-reported outcome measure: (1) AYAs experience social isolation and loss of independence; (2) AYAs have an uncertain sense of the future and need conversations around survivorship and long-term and late effects; (3) AYAs desire greater control over discussions with their care team; (4) AYAs need additional navigational and social/caregiver supports; (5) AYAs prefer an inclusive AYA space in the hospital; and (6) LGBTQ+ patients experience distinct concerns as AYA cancer patients. These will form the basis for specific and tailored clinical recommendations to improve AYA cancer care delivery. Full article

(This article belongs to the Special Issue Adolescent and Young Adult Oncology)

13 pages, 909 KiB

Open AccessArticle

Effect of Previous Alkylating Agent Exposure on Follicle Numbers in Cryopreserved Prepubertal and Young Adult Ovarian Tissue after Long-Term Xenografting

by Mirja Nurmio, Babak Asadi-Azarbaijani, Mi Hou, Ronja Kiviö, Jorma Toppari, Helena Tinkanen, Tiina Laine, Irma C. Oskam and Kirsi Jahnukainen

Cancers 2022, 14(2), 399; https://doi.org/10.3390/cancers14020399 - 13 Jan 2022

Cited by 4 | Viewed by 1576

Abstract

Purpose and methods: To elucidate whether previous cancer treatment affects graft recovery and follicle numbers, morphology, and development in grafts, cryopreserved ovarian biopsies obtained from 18 cancer patients aged 1–24 years with and without exposure to chemotherapy were xenografted as 1 mm³ [...] Read more.

Purpose and methods: To elucidate whether previous cancer treatment affects graft recovery and follicle numbers, morphology, and development in grafts, cryopreserved ovarian biopsies obtained from 18 cancer patients aged 1–24 years with and without exposure to chemotherapy were xenografted as 1 mm³ fragments to immunodeficient mice for 22 weeks with exogenous stimulation. Results: Graft recovery showed no association with chemotherapy exposure, pubertal stage, or leukemia contamination. Total follicle number per recovered graft varied between 0 and 1031 in the chemotherapy-exposed and between 0 and 502 in the non-chemotherapy-exposed group. Atretic follicles formed the largest proportion of the follicle pool in chemotherapy-exposed grafts. Increased atresia correlated with exposure to alkylating agents (mean ± SD 8866.2 ± 9316.3 mg/m²) but not with anthracyclines, pubertal stage, or leukemia contamination. Conclusion: The observation confirms the harmful effects of alkylating agents on ovarian tissue. Therapy at the median cumulative dose of 8866 mg/m² leads to the decreased quality of cryopreserved ovarian follicles in children and young adults. Full article

(This article belongs to the Special Issue Adolescent and Young Adult Oncology)

► Show Figures

Figure 1

21 pages, 9787 KiB

Open AccessArticle

Development and Evaluation of the Canteen Connect Online Health Community: Using a Participatory Design Approach in Meeting the Needs of Young People Impacted by Cancer

by Jennifer Cohen, Pandora Patterson, Melissa Noke, Kristina Clarke and Olga Husson

Cancers 2022, 14(1), 50; https://doi.org/10.3390/cancers14010050 - 23 Dec 2021

Cited by 3 | Viewed by 2917

Abstract

Adolescent and young adults (AYAs) impacted by their own or familial cancer require information and peer support throughout the cancer journey to ameliorate feelings of isolation. Online Health Communities (OHC) provide social networks, support, and health-related content to people united by a shared [...] Read more.

Adolescent and young adults (AYAs) impacted by their own or familial cancer require information and peer support throughout the cancer journey to ameliorate feelings of isolation. Online Health Communities (OHC) provide social networks, support, and health-related content to people united by a shared health experience. Using a participatory design (PD) process, Canteen developed Canteen Connect (CC), an OHC for AYAs impacted by cancer. This manuscript outlines the process used to develop CC: (1) A mixed-methods implementation evaluation of Version I of CC (CCv.1); (2) Qualitative workshops utilizing strengths-based approaches of PD and appreciative inquiry to inform the development of CC Version 2 (CCv.2); quantitative implementation evaluation to assess the appropriateness, acceptability, and effectiveness of CCv.2. Through several iterations designed and tested in collaboration with AYAs, CCv.2 had improvements in the user experience, such as the ability to send a private message to other users and the site becoming mobile responsive. Results from the evaluation showed CCv.2 was appropriate for connecting with other AYAs. Most AYAs reported satisfaction with CCv.2 and a positive impact on their feelings of sadness, worry, and/or anxiety. CCv.2 fills an important service provision gap in providing an appropriate and acceptable OHC for AYAs impacted by cancer, with initial promising psychological outcomes. Full article

(This article belongs to the Special Issue Adolescent and Young Adult Oncology)

► Show Figures

Figure 1

11 pages, 1644 KiB

Open AccessArticle

Differences in Internet Use and eHealth Needs of Adolescent and Young Adult Versus Older Cancer Patients; Results from the PROFILES Registry

by Carla Vlooswijk, Olga Husson, Emiel J. Krahmer, Rhodé Bijlsma, Suzanne E. J. Kaal, Sophia H. E. Sleeman, Lonneke V. van de Poll-Franse, Winette T. A. van der Graaf, Nadine Bol and Mies C. van Eenbergen

Cancers 2021, 13(24), 6308; https://doi.org/10.3390/cancers13246308 - 16 Dec 2021

Cited by 5 | Viewed by 1975

Abstract

Background: Our aim was to evaluate differences in cancer-related internet patterns between AYAs (adolescents and young adults; 18–39 years at time of diagnosis) and older adult cancer patients (40+ years). Methods: Cross-sectional surveys were distributed among AYA and older adult cancer patients regarding [...] Read more.

Background: Our aim was to evaluate differences in cancer-related internet patterns between AYAs (adolescents and young adults; 18–39 years at time of diagnosis) and older adult cancer patients (40+ years). Methods: Cross-sectional surveys were distributed among AYA and older adult cancer patients regarding cancer-related internet use and eHealth needs. Results: 299 AYAs (mean age 31.8 years) and 270 older adults (mean age 55.8 years) participated. AYAs searched significantly more often on the internet on a daily basis just before diagnosis (45% vs. 37%), right after diagnosis (71% vs. 62%) and during treatment (65% vs. 59%) compared to older adults. During follow up, there was a trend that AYAs searched less often on the internet compared to older adults (15% vs. 17%). AYAs searched more often on topics, such as alternative or complementary therapies, treatment guidelines, fertility, end of life, sexuality and intimacy, lifestyle and insurance. AYAs felt significantly better informed (75%) after searching for cancer-related information compared to older adults (65%) and had significantly less unmet needs regarding access to their own medical information (22% vs. 47%). AYAs search more on the internet on a daily basis/several times per week in the diagnosis and treatment phase than older cancer patients. They search on different topics than older adults and seems to have less unmet eHealth needs.It is important that these are easy to find and reliable. Full article

(This article belongs to the Special Issue Adolescent and Young Adult Oncology)

► Show Figures

Figure 1

28 pages, 374 KiB

Open AccessArticle

Patterns and Predictors of Healthcare Use among Adolescent and Young Adult Cancer Survivors versus a Community Comparison Group

by Ursula M. Sansom-Daly, Claire E. Wakefield, Christina Signorelli, Mark W. Donoghoe, Antoinette Anazodo, Susan M. Sawyer, Michael Osborn, Rosalie Viney, Nicholas Daniell, Kate Faasse and Richard J. Cohn

Cancers 2021, 13(21), 5270; https://doi.org/10.3390/cancers13215270 - 20 Oct 2021

Cited by 2 | Viewed by 2283

Abstract

Healthcare use (HCU) during survivorship can mitigate adolescent and young adult (AYA) cancer survivors’ (aged 15–39 years) risk of medical and psychosocial late effects, but this is understudied. We surveyed 93 Australian AYA post-treatment cancer survivors (M_age = 22.0 years, SD [...] Read more.

Healthcare use (HCU) during survivorship can mitigate adolescent and young adult (AYA) cancer survivors’ (aged 15–39 years) risk of medical and psychosocial late effects, but this is understudied. We surveyed 93 Australian AYA post-treatment cancer survivors (M_age = 22.0 years, SD = 3.5; 55.9% female) and a comparison sample of 183 non-matched AYAs (M_age = 19.7, SD = 3.2; 70.5% female) on their HCU, medication use, depression/anxiety, and general functioning. Relative to our comparison AYAs, a higher proportion of our survivor group reported medical HCU (community-delivered: 65.6% versus 47.0%, p = 0.003; hospital-delivered: 31.2% versus 20.3%, p = 0.044) and mental HCU (53.8% vs. 23.5%; p < 0.0001) in the past six months. A higher proportion of our survivors reported taking medications within the past six months than our comparison AYAs (61.3% vs. 42.1%, p = 0.003) and taking more types (p < 0.001). Vitamin/supplement use was most common followed by psychotropic medications. Our survivor group reported lower depression (p = 0.001) and anxiety symptoms (p = 0.003), but similar work/study participation (p = 0.767) to our comparison AYAs. Across groups, psychological distress was associated with higher mental HCU (p = 0.001). Among survivors, those who were female, diagnosed with brain/solid tumors and who had finished treatment more recently reported greater HCU. Future research should establish whether this level of HCU meets AYAs’ survivorship needs. Full article

(This article belongs to the Special Issue Adolescent and Young Adult Oncology)

10 pages, 559 KiB

Open AccessArticle

Time from Diagnosis and Correlates of Health-Related Quality of Life among Young Adult Colorectal Cancer Survivors

by Kimberly A. Miller, Julia Stal, Phuong Gallagher, Zhen Weng, David R. Freyer, Jonathan N. Kaslander, Priscilla Marin, Heinz-Josef Lenz, Joel E. Milam, Lauren Govaerts and Afsaneh Barzi

Cancers 2021, 13(16), 4045; https://doi.org/10.3390/cancers13164045 - 11 Aug 2021

Cited by 12 | Viewed by 2595

Abstract

The incidence of colorectal cancer (CRC) is rising among young adults. Health-related quality of life (HRQoL) in survivorship is not well-described in this population. We assessed HRQoL among young adult CRC survivors diagnosed from age 18–39 (AYAs) to examine differences by time from [...] Read more.

The incidence of colorectal cancer (CRC) is rising among young adults. Health-related quality of life (HRQoL) in survivorship is not well-described in this population. We assessed HRQoL among young adult CRC survivors diagnosed from age 18–39 (AYAs) to examine differences by time from diagnosis, and to identify key correlates. A cross-sectional online survey was administered in collaboration with a national patient advocacy organization. The Functional Assessment of Cancer Therapy (FACT-C) was used to measure HRQoL, which assesses HRQoL globally and across 4 domains: emotional, physical, social, and functional. T-tests were conducted to compare HRQoL between survivors who were 6–18 months versus 19–36 months from diagnosis or relapse and multiple linear regression was conducted to identify correlates. The sample (n = 196) had a mean age of 32.2(SD ± 4.5); 116 (59.9%) were male; and the self-reported tumor location was colon (39.3%) or rectal (60.7%). The majority (56.4%) were diagnosed with stage 2 disease; 96.9% were non-metastatic. The mean global HRQoL score was 67.7 out of a possible score of 136. Across domains, mean scores were low. Emotional and physical well-being were significantly higher among survivors who were 19–36 months from diagnosis/relapse compared to those 6–18 months from diagnosis/relapse. Longer time from diagnosis and older current age were associated with higher HRQoL, while more intensive treatment and higher clinical disease stage were negatively associated, particularly in the emotional and physical domains. Overall, HRQoL was low in this population, and further research is needed to inform age-appropriate interventions to improve HRQoL for AYA CRC survivors. Full article

(This article belongs to the Special Issue Adolescent and Young Adult Oncology)

► Show Figures

Figure 1

16 pages, 2417 KiB

Open AccessArticle

A Population-Based Analysis of 30-Year Mortality among Five-Year Survivors of Adolescent and Young Adult Cancer: The Roles of Primary Cancer, Subsequent Malignancy, and Other Health Conditions

by Diana J. Moke, Ziwei Song, Lihua Liu, Ann S. Hamilton, Dennis Deapen and David R. Freyer

Cancers 2021, 13(16), 3956; https://doi.org/10.3390/cancers13163956 - 05 Aug 2021

Cited by 7 | Viewed by 2495

Abstract

Despite an aggregate 5-year survival of 85%, many adolescents and young adults (AYAs, 15–39 years old) treated for cancer die prematurely decades later. To develop a more complete understanding of this problem, particularly the role of specific subsequent malignant neoplasms (SMNs), we used [...] Read more.

Despite an aggregate 5-year survival of 85%, many adolescents and young adults (AYAs, 15–39 years old) treated for cancer die prematurely decades later. To develop a more complete understanding of this problem, particularly the role of specific subsequent malignant neoplasms (SMNs), we used the SEER-9 registry to analyze causes of death (COD: Primary cancer, SMN, non-malignant conditions) among 162,317 AYAs diagnosed with first cancer between 1975–2012 and surviving 5 or more years. Cumulative mortality, attributable mortality, standardized mortality ratios (SMRs), and adjusted hazard ratios were determined for each cancer site and COD. At 30 years, cumulative mortality due to primary cancer was matched by that due to all other causes (12.8% 95% CI [12.5%, 13.0%] for primary cancer versus 12.8% [12.5%, 13.1%] for all other causes combined) in the combined cohort, and was overtaken by non-malignant conditions in Hodgkin lymphoma, testicular, cervical/uterine, and thyroid cancers. Overall, SMNs accounted for 20% of malignant deaths, the most common being lung/bronchus (25.6%), colorectal/liver/biliary/pancreas (19.1%), and breast (10.2%). For non-malignant conditions, excess risk was noted overall (SMR 1.37, 95% CI [1.34, 1.40]) and for infectious (1.97 [1.85, 2.10]), renal (1.85 [1.60, 2.13]), cardio/cerebrovascular (1.38 [1.33, 1.43]), and suicide (1.15 [1.04, 1.27]). Racial minorities were at significantly higher risk across all COD. Safer therapy, longitudinal monitoring, and primary/secondary preventive strategies are needed to reduce late mortality in this vulnerable population. Full article

(This article belongs to the Special Issue Adolescent and Young Adult Oncology)

► Show Figures

Figure 1

12 pages, 2166 KiB

Open AccessArticle

A Retrospective 5-Year Single Center Study Highlighting the Risk of Cancer Predisposition in Adolescents and Young Adults

by Frank Jordan, Simon Huber, Sebastian Sommer, Gerhard Schenkirsch, Michael C. Frühwald, Martin Trepel, Rainer Claus and Michaela Kuhlen

Cancers 2021, 13(12), 3033; https://doi.org/10.3390/cancers13123033 - 17 Jun 2021

Cited by 1 | Viewed by 1924

Abstract

The knowledge of inherited cancer susceptibility opens a new field of cancer medicine. We conducted a retrospective single-center cohort study. Data of AYA cancer patients registered between January 2014 and December 2018 were analyzed. The median age at cancer diagnosis of 704 patients [...] Read more.

The knowledge of inherited cancer susceptibility opens a new field of cancer medicine. We conducted a retrospective single-center cohort study. Data of AYA cancer patients registered between January 2014 and December 2018 were analyzed. The median age at cancer diagnosis of 704 patients (343 males, 361 females) was 32 years (range, 15–39 years), median follow-up was 181 days (range, 1–1975 days). Solid tumors were diagnosed in 575 (81.7%) patients, hematologic malignancies in 129 (18.3%) patients. Multiple primary cancers were reported in 36 (5.1%) patients. Malignancies that may be indicators of inherited cancer susceptibility were diagnosed in 2.6% of patients with cancers of the endocrine system, in 73% of cancers of the gastrointestinal system, in 88% of tumors of the central nervous system, in 92% of cancers of the urinary tract, and in 59% of head and neck tumors. In addition, all patients with breast cancer, sarcoma, and peripheral nerve sheath tumor were in need of genetic counselling. In sum, at least 181 of 704 (25.7%) AYA cancer patients presented with malignancies suspicious of harboring pathogenic germline variants. Evaluation of AYA cancer patients for hereditary cancer predisposition needs to be integrated into daily practice. Full article

(This article belongs to the Special Issue Adolescent and Young Adult Oncology)

► Show Figures

Figure 1

15 pages, 7409 KiB

Open AccessArticle

The Australian Youth Cancer Service: Developing and Monitoring the Activity of Nationally Coordinated Adolescent and Young Adult Cancer Care

by Pandora Patterson, Kimberley R. Allison, Helen Bibby, Kate Thompson, Jeremy Lewin, Taia Briggs, Rick Walker, Michael Osborn, Meg Plaster, Allan Hayward, Roslyn Henney, Shannyn George, Dominic Keuskamp and Antoinette Anazodo

Cancers 2021, 13(11), 2675; https://doi.org/10.3390/cancers13112675 - 28 May 2021

Cited by 19 | Viewed by 4471

Abstract

Adolescents and young adults (aged 15–25 years) diagnosed with cancer have unique medical and psychosocial experiences and care needs, distinct from those of paediatric and older adult patients. Since 2011, the Australian Youth Cancer Services have provided developmentally appropriate, multidisciplinary and comprehensive care [...] Read more.

Adolescents and young adults (aged 15–25 years) diagnosed with cancer have unique medical and psychosocial experiences and care needs, distinct from those of paediatric and older adult patients. Since 2011, the Australian Youth Cancer Services have provided developmentally appropriate, multidisciplinary and comprehensive care to these young patients, facilitated by national service coordination and activity data collection and monitoring. This paper reports on how the Youth Cancer Services have conceptualised and delivered quality youth cancer care in four priority areas: clinical trial participation, oncofertility, psychosocial care and survivorship. National activity data collected by the Youth Cancer Services between 2016–17 and 2019–20 are used to illustrate how service monitoring processes have facilitated improvements in coordination and accountability across multiple indicators of quality youth cancer care, including clinical trial participation, access to fertility information and preservation, psychosocial screening and care and the transition from active treatment to survivorship. Accounts of both service delivery and monitoring and evaluation processes within the Australian Youth Cancer Services provide an exemplar of how coordinated initiatives may be employed to deliver, monitor and improve quality cancer care for adolescents and young adults. Full article

(This article belongs to the Special Issue Adolescent and Young Adult Oncology)

► Show Figures

Figure 1

14 pages, 279 KiB

Open AccessArticle

How Do Young Women with Cancer Experience Oncofertility Counselling during Cancer Treatment? A Qualitative, Single Centre Study at a Danish Tertiary Hospital

by Line Bentsen, Helle Pappot, Maiken Hjerming, Lotte B. Colmorn, Kirsten T. Macklon and Signe Hanghøj

Cancers 2021, 13(6), 1355; https://doi.org/10.3390/cancers13061355 - 17 Mar 2021

Cited by 14 | Viewed by 2153

Abstract

Background: Adolescents and young adults (AYAs) with cancer are at risk of therapy-induced infertility. The importance of initial and specialized fertility counselling to this patient group is undisputed. Despite international guidelines, oncofertility counselling is still inadequate. The purpose of this study was to [...] Read more.

Background: Adolescents and young adults (AYAs) with cancer are at risk of therapy-induced infertility. The importance of initial and specialized fertility counselling to this patient group is undisputed. Despite international guidelines, oncofertility counselling is still inadequate. The purpose of this study was to examine how female AYA cancer patients and survivors experienced initial and specialized oncofertility counselling, and to present their specific suggestions on how to improve the oncofertility counselling. Methods: Twelve individual semi-structured interviews were performed with AYAs aged 20–35 with cancer or who were survivors. Participants were recruited via a youth support centre and social organization for AYAs with cancer. Data was analysed using thematic analysis. Results: Three main themes were found: Support is needed for navigating the fertility information jungle; The doctor’s approach determines the content of the patient consultation; Inadequate and worrying information causes mistrust and frustration. Conclusion: Results indicate a continuing problem regarding insufficient oncofertility counselling to AYAs with cancer. To ensure adequate and uniform information, especially in the initial oncofertility counselling, national guidelines for oncology specialists are suggested including multidisciplinary effort and collaboration between oncology and fertility specialists in mind. In addition, participants suggest focus on communication skills. Full article

(This article belongs to the Special Issue Adolescent and Young Adult Oncology)

14 pages, 1240 KiB

Open AccessArticle

Supporting the Needs of Adolescents and Young Adults: Integrated Palliative Care and Psychiatry Clinic for Adolescents and Young Adults with Cancer

by Mohamed Abdelaal, Pamela J. Mosher, Abha Gupta, Breffni Hannon, Christine Cameron, Malka Berman, Rahim Moineddin, Jonathan Avery, Laura Mitchell, Madeline Li, Camilla Zimmermann and Ahmed al-Awamer

Cancers 2021, 13(4), 770; https://doi.org/10.3390/cancers13040770 - 12 Feb 2021

Cited by 11 | Viewed by 4246

Abstract

Clinical guidelines aimed at cancer care for adolescents and young adults (AYAs) encourage early integration of palliative care, yet there are scarce data to support these recommendations. We conducted a retrospective chart review of AYA patients, aged 15 to 39 years, who were [...] Read more.

Clinical guidelines aimed at cancer care for adolescents and young adults (AYAs) encourage early integration of palliative care, yet there are scarce data to support these recommendations. We conducted a retrospective chart review of AYA patients, aged 15 to 39 years, who were referred to the Integrated AYA Palliative Care and Psychiatry Clinic (IAPCPC) at the Princess Margaret Cancer Centre between May 2017 and November 2019 (n = 69). Demographic data, symptom prevalence, change in symptom scores between baseline consultation and first follow-up, and intensity of end-of-life care were collected from the patients’ medical charts, analyzed, and reported. Of the 69 patients, 59% were female, and sarcoma was the most common cancer. A majority of patients had at least one symptom scored as moderate to severe; tiredness, pain, and sleep problems were the highest scored symptoms. More than one-third used medical cannabis to manage their symptoms. Symptom scores improved in 61% after the first clinic visit. Out of the 69 patients, 50 (72.5%) had died by October 2020, with a median time between the initial clinic referral and death of 5 months (range 1–32). Three patients (6%) received chemotherapy, and eight (16%) were admitted to an intensive care unit during the last month of life. In conclusion, AYAs with advanced cancer have a high burden of palliative and psychosocial symptoms. Creating a specialized AYA palliative care clinic integrated with psychiatry showed promising results in improving symptom scores and end-of-life planning. Full article

(This article belongs to the Special Issue Adolescent and Young Adult Oncology)

► Show Figures

Figure 1

26 pages, 3968 KiB

Open AccessArticle

Incidence, Survival, and Mortality Trends of Cancers Diagnosed in Adolescents and Young Adults (15–39 Years): A Population-Based Study in The Netherlands 1990–2016

by Daniël J. van der Meer, Henrike E. Karim-Kos, Marianne van der Mark, Katja K. H. Aben, Rhodé M. Bijlsma, Anita W. Rijneveld, Winette T. A. van der Graaf and Olga Husson

Cancers 2020, 12(11), 3421; https://doi.org/10.3390/cancers12113421 - 18 Nov 2020

Cited by 43 | Viewed by 4216

Abstract

Adolescent and young adult (AYA) cancer patients, aged 15–39 years at primary cancer diagnosis, form a distinct, understudied, and underserved group in cancer care. This study aimed to assess long-term trends in incidence, survival, and mortality of AYA cancer patients within the Netherlands. [...] Read more.

Adolescent and young adult (AYA) cancer patients, aged 15–39 years at primary cancer diagnosis, form a distinct, understudied, and underserved group in cancer care. This study aimed to assess long-term trends in incidence, survival, and mortality of AYA cancer patients within the Netherlands. Data on all malignant AYA tumours diagnosed between 1990–2016 (n = 95,228) were obtained from the Netherlands Cancer Registry. European age-standardised incidence and mortality rates with average annual percentage change (AAPC) statistics and five-year relative survival rates were calculated. The overall cancer incidence increased from 54.6 to 70.3 per 100,000 person-years (AAPC: +1.37%) between 1990–2016, and increased for both sexes individually and for most cancer types. Five-year relative survival overall improved from 73.7% in 1990–1999 to 86.4% in 2010–2016 and improved for both sexes and most cancer types. Survival remained poor (<60%) for rhabdomyosarcoma, lung, stomach, liver, bladder, and pancreatic carcinomas, among others. Mortality rates among male AYAs overall declined from 10.8 to 6.6 (AAPC: −1.64%) and from 14.4 to 10.1 per 100,000 person-years (AAPC: −1.81%) for female AYAs since 1990. Mortality rates remained unchanged for male AYAs aged 20–24 and 25–29 years. In conclusion, over the past three decades, there has been a considerable increase in cancer incidence among AYAs in the Netherlands. Meanwhile, the survival improved and the mortality overall declined. Survival at five-years now well exceeds above 80%, but did not do so for all cancer types. Full article

(This article belongs to the Special Issue Adolescent and Young Adult Oncology)

► Show Figures

Figure 1

Review

Jump to: Research, Other

37 pages, 912 KiB

Open AccessReview

The Burden of Late Effects and Related Risk Factors in Adolescent and Young Adult Cancer Survivors: A Scoping Review

by Charlotte Ryder-Burbidge, Ruth L. Diaz, Ronald D. Barr, Sumit Gupta, Paul C. Nathan, Sarah J. McKillop and Miranda M. Fidler-Benaoudia

Cancers 2021, 13(19), 4870; https://doi.org/10.3390/cancers13194870 - 28 Sep 2021

Cited by 21 | Viewed by 3467

Abstract

Risk factors associated with late effects in survivors of adolescent and young adult (AYA) cancer are poorly understood. We conducted a systematic scoping review to identify cohort studies published in English from 2010–2020 that included: (1) cancer survivors who were AYAs (age 15–39 [...] Read more.

Risk factors associated with late effects in survivors of adolescent and young adult (AYA) cancer are poorly understood. We conducted a systematic scoping review to identify cohort studies published in English from 2010–2020 that included: (1) cancer survivors who were AYAs (age 15–39 years) at diagnosis and (2) outcomes of subsequent malignant neoplasms (SMNs), chronic conditions, and/or late mortality (>5 years postdiagnosis). There were 652 abstracts identified and, ultimately, 106 unique studies were included, of which 23, 34, and 54 studies related to the risk of SMNs, chronic conditions, and mortality, respectively. Studies investigating late effects among survivors of any primary cancer reported that AYA cancer survivors were at higher risk of SMN, chronic conditions, and all-cause mortality compared to controls. There was an indication that the following factors increased risk: radiation exposure (n = 3) for SMNs; younger attained age (n = 4) and earlier calendar period of diagnosis (n = 3) for chronic conditions; and non-Hispanic Black or Hispanic (n = 5), low socioeconomic status (n = 3), and earlier calendar period of diagnosis (n = 4) for late mortality. More studies including the full AYA age spectrum, treatment data, and results stratified by age, sex, and cancer type are needed to advance knowledge about late effects in AYA cancer survivors. Full article

(This article belongs to the Special Issue Adolescent and Young Adult Oncology)

► Show Figures

Figure 1

23 pages, 752 KiB

Open AccessReview

Adolescent and Young Adult (AYA) Cancer Survivorship Practices: An Overview

by Silvie H. M. Janssen, Winette T. A. van der Graaf, Daniël J. van der Meer, Eveliene Manten-Horst and Olga Husson

Cancers 2021, 13(19), 4847; https://doi.org/10.3390/cancers13194847 - 28 Sep 2021

Cited by 65 | Viewed by 6769

Abstract

Worldwide, more than 1.2 million adolescents and young adults (AYAs; those aged 15–39 years) are diagnosed with cancer each year. Although considerable variability exists according to cancer site and stage of disease, the 5-year relative survival at the time of diagnosis has been [...] Read more.

Worldwide, more than 1.2 million adolescents and young adults (AYAs; those aged 15–39 years) are diagnosed with cancer each year. Although considerable variability exists according to cancer site and stage of disease, the 5-year relative survival at the time of diagnosis has been estimated at >80% for all AYA patients with cancer combined. Extensive survivorship research in recent decades has focused on patients diagnosed with cancer as children (<15 years) and older adults (>39 years), yet few studies to date have reported outcomes specifically for patients diagnosed as AYAs. With increasing incidence and improving survival for many tumor types, leading to the majority of AYA patients with cancer becoming long-term survivors, there is a critical need for research efforts to inform the survivorship care of this growing population. This article describes the population of AYA cancer survivors according to their epidemiology and late and long-term effects, the challenges and models of AYA survivorship care, as well as future opportunities for research and healthcare. Full article

(This article belongs to the Special Issue Adolescent and Young Adult Oncology)

► Show Figures

Figure 1

Other

Jump to: Research, Review

6 pages, 214 KiB

Open AccessCommentary

Fertility Counseling in Survivors of Cancer in Childhood and Adolescence: Time for a Reappraisal?

by Francesca Filippi, Fedro Peccatori, Siranoush Manoukian, Carlo Alfredo Clerici, Chiara Dallagiovanna, Cristina Meazza, Marta Podda, Edgardo Somigliana, Filippo Spreafico, Maura Massimino and Monica Terenziani

Cancers 2021, 13(22), 5626; https://doi.org/10.3390/cancers13225626 - 10 Nov 2021

Cited by 2 | Viewed by 1424

Abstract

Genetic predisposition could have an important role in the pathogenesis of cancers in children and adolescents. A recent study by our group showed that, among female survivors of cancers in childhood and adolescence, the proportion of cases involving a possible genetic predisposition was [...] Read more.

Genetic predisposition could have an important role in the pathogenesis of cancers in children and adolescents. A recent study by our group showed that, among female survivors of cancers in childhood and adolescence, the proportion of cases involving a possible genetic predisposition was sizable (at least one in five). Our sample is too small to be representative of the general population, but it gave us an opportunity to reappraise this issue. Women with a genetic predisposition can transmit the risk of cancer to their offspring, and their awareness of this may influence their reproductive and fertility preservation choices. In our experience, a predisposition to cancer receives little attention in the fertility counseling and decision-making process unless a patient already has a definitive molecular diagnosis of a hereditary cancer syndrome. We feel it is essential to empower women on this issue, particularly as there are ways to overcome the problem, including preimplantation genetic testing (PGT-M) in definitively diagnosed cases, egg donation and adoption. In the context of fertility counseling for survivors of cancer in childhood and adolescence who have reached adulthood, the risk of transmitting a predisposition to cancer should be discussed with patients, if relevant and desired. Full article

(This article belongs to the Special Issue Adolescent and Young Adult Oncology)

17 pages, 405 KiB

Open AccessStudy Protocol

Comprehensive Assessment of Incidence, Risk Factors, and Mechanisms of Impaired Medical and Psychosocial Health Outcomes among Adolescents and Young Adults with Cancer: Protocol of the Prospective Observational COMPRAYA Cohort Study

by Olga Husson, Marjolijn J. L. Ligtenberg, Lonneke V. van de Poll-Franse, Judith B. Prins, Martin J. van den Bent, Mies C. van Eenbergen, Renske Fles, Eveliene Manten-Horst, Jourik A. Gietema and Winette T. A. van der Graaf

Cancers 2021, 13(10), 2348; https://doi.org/10.3390/cancers13102348 - 13 May 2021

Cited by 6 | Viewed by 2524

Abstract

Adolescent and young adult (AYA) cancer patients suffer from delay in diagnosis, and lack of centralized cancer care, age-adjusted expertise, and follow-up care. This group presents with a unique spectrum of cancers, distinct tumor biology, cancer risk factors, developmental challenges, and treatment regimens [...] Read more.

Adolescent and young adult (AYA) cancer patients suffer from delay in diagnosis, and lack of centralized cancer care, age-adjusted expertise, and follow-up care. This group presents with a unique spectrum of cancers, distinct tumor biology, cancer risk factors, developmental challenges, and treatment regimens that differ from children and older adults. It is imperative for advances in the field of AYA oncology to pool data sources across institutions and create large cohorts to address the many pressing questions that remain unanswered in this vulnerable population. We will create a nationwide infrastructure (COMPRAYA) for research into the incidence, predictive/prognostic markers, and underlying mechanisms of medical and psychosocial outcomes for AYA between 18–39 years diagnosed with cancer. A prospective, observational cohort of (n = 4000), will be established. Patients will be asked to (1) complete patient-reported outcome measures; (2) donate a blood, hair, and stool samples (to obtain biochemical, hormonal, and inflammation parameters, and germline DNA); (3) give consent for use of routinely archived tumor tissue and clinical data extraction from medical records and registries; (4) have a clinic visit to assess vital parameters. Systematic and comprehensive collection of patient and tumor characteristics of AYA will support the development of evidence-based AYA care programs and guidelines. Full article

(This article belongs to the Special Issue Adolescent and Young Adult Oncology)

► Show Figures

Figure 1

Journal Menu

Journal Browser

Adolescent and Young Adult Oncology

Share This Special Issue

Special Issue Editors

Special Issue Information

Keywords

Published Papers (17 papers)

Research

Review

Other

Further Information

Guidelines

MDPI Initiatives

Follow MDPI