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"Absolutely No One Else, Other Than Yourself": Experiences of Adolescents and Young Adults with Cancer During the COVID-19 Pandemic. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-11-29 Ayesha Holderness,Cameron Magrath,Helen Hatcher,Deborah Critoph
Introduction: The COVID-19 pandemic caused widespread disruption to the provision of health care in the United Kingdom. It posed two risks to AYACs: disruption of care and long-term adverse consequences compounding late effects. This study sought to better understand the experiences of AYACs receiving care during the pandemic and identify areas where greater support is needed. Methods: In-depth semistructured
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Reel Resilience: Unveiling the Potential Role of Entertainment Media Narratives in Improving Psychological Well-Being Among Adolescent and Young Adult Cancer Survivors. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-11-29 Meredith K Reffner Collins
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The Future of Adolescent and Young Adult Supportive Care: Looking Beyond the COVID-19 Pandemic. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-11-07 Marlie Smith,Chana Korenblum,Pamela J Mosher,Abha A Gupta,Jonathan Avery
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The Development and Implementation of Adolescent and Young Adult Oncology Programs: Teen Cancer America's Strategy. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-11-06 Emily R Haines,Hilary Gan,Alec Kupelian,Betty Roggenkamp,Lauren Lux,Bindu Kumar,Simon Davies
Reflecting a growing recognition that adolescents and young adults (AYAs) with cancer have unique needs that demand novel approaches to care delivery, AYA-specific cancer programs are emerging across the United States to better serve this population. However, the limited availability of health system funding to support such efforts, in combination with the dearth of guidance that exists to guide AYA
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Patient Reported Fatigue Among Adolescent and Young Adult Cancer Patients Compared to Non-Cancer Patients: A Systematic Review and Meta-Analysis. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-10-30 Cheryl Forbes,Sarah Tanner,Teyl Engstrom,Wen Ray Lee,Dhaval Patel,Rick Walker,Natalie Bradford,Jason D Pole
Adolescent and young adult (AYA) cancer patients and survivors are a growing population due to more frequent diagnoses and improved survival. Fatigue is a common symptom experienced by cancer patients and it is often missed by health care professionals. Patient reported outcome measures (PROMs) can assist in evaluating patient reported fatigue. This systematic review aims to determine if AYA cancer
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An Examination of the Association Between Psychosocial Aspects of Fertility Issues and Demographic Characteristics of Unmarried Adolescent and Young Adult Cancer Survivors. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-10-30 Kanako Yoshida,Yutaka Matsui
Purpose: The purpose of this study was to examine the association between fertility issues and demographic characteristics of unmarried adolescent and young adult cancer survivors. Methods: We conducted a survey among cancer survivors who were 15-39 years old and unmarried at the time of cancer diagnosis and 20-45 years old at the time of the survey. Views on fertility issues, originally developed
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Health Care Provider Perceptions of Using Social Media to Improve Sexual Health for Adolescent and Young Adult Cancer Survivors. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-10-27 Julia H Drizin,Jenna M Kahn,Daniel Faltesek,Jessica R Gorman
This study explored (1) health care provider (HCP) perceived barriers and facilitators to social media communication about sexual health with adolescent and young adult survivors, and (2) strategies that can help HCPs navigate social media use for this purpose. Thematic analysis of 11 semistructured HCP interviews resulted in four themes and suggests that social media platforms offer a promising avenue
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Recommendations from the Professional Advisory Committee on Nursing Practice When Caring for Adolescents and Young Adults with Cancer in Israel. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-10-27 Irit Schwartz-Attias,Tova David,Tatiyana Amromin,Michal Bar-Yosef,Yael Bartov,Orna Ben Yaakov,Levana Bernstein,Marcela Broitman,Amira Cohen,Osnat Cohen,Limor Eisenberg,Nurit Eshel,Nati Gindi Amsalem,Natan Gorelik,Shimrit Gerbi,Haya Raz,Nahla Naamneh,Svetlana Nemtsov,Dalit Pintel,Keren Sztrigler,Shoshy Goldberg,Semyon Melnikov
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Neck Circumference for Identification of Excess Adiposity in Adolescents with Cancer: A Better Parameter for Use in Clinical Practice? J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-10-25 Roberta de Lucena Ferretti,Priscila Dos Santos Maia-Lemos,Karen Jaloretto Teixeira Guedes,Eliana Maria Monteiro Caran
Purpose: Excess weight in adolescents with cancer during treatment does affect cancer outcomes. Neck circumference (NC), an easygoing anthropometric measure, may present greater metabolic risk, and is associated with excess adiposity. The aim of this study was to identify the prevalence of elevated NC in adolescents with cancer and associated factors. Methods: Cross-sectional study with adolescents
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Improving Supportive and Palliative Care Integration in Adolescent and Young Adult Cancer. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-10-25 Ruwanthie Amanda Fernando
Purpose: Timely supportive and palliative care (SPC) integration in adolescent and young adult (AYA) cancer management is recommended in curative and palliative settings. However, multiple barriers exist to implementing this goal. Liverpool Cancer Therapy Center (LCTC) serviced a growing AYA (15-39 years) population without AYA-dedicated services and the vast majority receiving no SPC engagement. Concerned
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The Development of a Bereavement Support Group Curriculum for Bereaved Parents of Young Adult Children: Bridging the Gap. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-10-23 Sue E Morris,Annelise K Ryan,Paige Malinowski,Cristina Pozo-Kaderman,Karen M Fasciano
Purpose: There is limited research addressing the bereavement needs of parents whose young adult (YA) children have died from cancer. Research within oncology about the impact of child loss has tended to focus on parents of pediatric aged children. We adapted a general bereavement support group curriculum used with adults to address the unique needs of bereaved parents of YAs. Methods: Using a quality
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Establishing Reliability and Validity of the FACE-Q Craniofacial Module for Pediatric Head and Neck Cancer. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-10-18 Yi Wang,Charlene Rae,Elena Tsangaris,Paul C Nathan,Eric Bouffet,David Dix,Karen Wong Riff,Anne Klassen
Purpose: We aimed to establish content validity and assess the psychometric properties of the FACE-Q Craniofacial Module, a patient-reported outcome measure, for use in pediatric and adolescent patients with head and neck cancer (HNC). Methods: To establish content validity (Part 1), between June 2017 and August 2019, cognitive interviews were conducted with survivors of pediatric HNC (n = 15), and
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Using Real-World Data to Explore the Impact of One-Time Financial Grants Among Young Adult Cancer Survivors. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-10-18 Bridgette Thom,Neha Arora,Catherine Benedict,Emeline M Aviki,Fumiko Chino,Danielle N Friedman,Samantha E Watson,Michelle S Zeitler
Young adult (YA) cancer survivors experience worse financial outcomes than older survivors. This analysis used data from Expect Miracles Foundation to explore the impact of one-time financial grants on financial well-being and access to health care. Among 300 respondents, the average grant was $1526 (standard deviation = $587; range $300-$3000). Respondents reported improved ability to pay expenses
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Real-World Outcomes of Adolescents and Young Adults with Diffuse Large B-Cell Lymphoma: A Multicenter Retrospective Cohort Study. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-10-16 Denisse Castro-Uriol,Ligia Rios,Daniel Enriquez-Vera,Jacqueline Montoya,Thanya Runciman,Sandra Alarcón,Arturo Zapata,Eddy Hernández,Esmeralda León,Luis Malpica,Bryan Valcarcel
Purpose: Patients with diffuse large B-cell lymphoma (DLBCL) are typically treated with rituximab, cyclophosphamide, doxorubicin, vincristine, and prednisone (R-CHOP). However, a standard of care for managing adolescents and young adults (AYAs) with DLBCL is lacking. We examine treatment approaches and outcomes of this population. Methods: We included 90 AYAs (15-39 years) diagnosed with DLBCL between
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Delayed Solid Tumor Presentations in Adolescent and Young Adults Patients in the Bronx. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-10-09 Rachel Offenbacher,Sarah Norris,David M Loeb,Adam Levy
Adolescent and young adults (AYAs) require support from their parents and caregivers. While there are formal programs available for patients with complex medical problems, <20% of pediatric practices are performing transition readiness processes in patients aged 12-17 years to effective transition. Although cancer is the most common cause of disease-related death in AYAs in high-income countries, AYA
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AYA-UNITE: Lessons Learned on Intervention Development Promoting Social and Physical Health of Adolescent/Young Adult Cancer Survivors. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-10-09 Pooja Rao,Anne E Kazak,Shawna E Doerksen,Laura M Koehly,Ashton M Verdery,Jared Heitzenrater,Brennen A Harding,Courtney L Byrnes,Heather J Costigan,Liza S Rovniak,Christopher N Sciamanna,Lauren J Van Scoy,Kathryn H Schmitz
Adolescent/young adult cancer survivors (AYACS) struggle with poor psychosocial health related to social disruptions due to cancer diagnosis, impacting long-term goal achievement and overall health. In particular, social health promotion is overlooked in AYACS' care. AYA-UNITE, a sociobehavioral exercise intervention pilot for AYACS 15-21 years of age at cancer diagnosis, was designed to foster AYACS'
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The Psychosocial Impact of the COVID-19 Pandemic on Adolescent and Young Adult Cancer Survivors in the United States: An Integrative Review. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-10-05 Kelsey R Wolfe,Ashley Martinez,Joyce E Dains
Adolescent and young adult cancer survivors (AYAs) are uniquely challenged with navigating health care systems during an important developmental phase of life. During the Coronavirus disease 2019 (COVID-19) pandemic, many people experienced social isolation, mental health symptoms, and schooling and employment changes, which may have affected vulnerable AYA cancer survivors. The purpose of this integrative
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Melanoma Arising on a Nevus After Tattooing. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-09-28 Cristian Fidanzi,Nicolò Mori,Matteo Bevilacqua,Marco Romanelli,Valentina Dini,Agata Janowska
The pathogenetic relationship between tattooing and the development of malignant melanoma has not been demonstrated yet, but there are numerous instances documented in the literature where both benign and malignant lesions have developed on tattoos. We report the case of a 39-year-old man with a melanoma that arose on a nevus on the back after tattooing. Since the identification of melanocytes lesions
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Physical Activity, Fitness, and Cardiovascular Disease Risk in Adolescent Childhood Cancer Survivors Compared to Controls: The Physical Activity in Childhood Cancer Survivors Study. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-09-13 Mari Bratteteig,Corina Silvia Rueegg,Truls Raastad,May Grydeland,Ingrid Kristin Torsvik,Christina Schindera,Ellen Ruud,Sigmund Alfred Anderssen
Purpose: Childhood cancer survivors have increased risk of cardiac late effects that can be potentially mitigated by physical activity and fitness. We aimed to (1) compare cardiovascular disease (CVD) risk between survivors and controls, and (2) examine whether the associations of moderate-to-vigorous physical activity (MVPA), cardiorespiratory fitness (CRF), and musculoskeletal fitness (MSF) with
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How Do Adolescent and Young Adult Patients with Cancer Manage Their Chemotherapy-Related Symptoms at Home? J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-09-12 Hiba Naz,Ester Carolina Apesoa-Varano,Crystal Romero,Theresa Keegan,Marcio Malogolowkin,Christina Callas,Melissa Gosdin,Elysia Alvarez
Chemotherapy can cause many distressing side effects, potentially impacting treatment completion and quality of life in adolescent and young adult (AYA) patients with cancer. To identify ways to help mitigate chemotherapy-related symptoms, we sought to elicit barriers and facilitators to managing symptoms experienced by AYAs with cancer through interviews. Qualitative thematic analysis identified three
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Physical Activity Intervention Characteristics and Effects on Behavioral and Health-Related Outcomes Among Adolescents and Young Adults Living with and Beyond Cancer: A Systematic Review. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-09-08 Rebecca L Hoover,Jingle Xu,Jamie L Conklin,Hazel B Nichols,Andrew Smitherman,Carmina G Valle,Todd Schwartz,Deborah K Mayer,Rachel Hirschey
Participation in physical activity (PA) during and after cancer treatment is safe and beneficial in the adolescent and young adult (AYA) cancer population. PA can positively impact health-related outcomes; however, participation remains low. This systematic review aims to describe PA intervention characteristics and outcomes in AYA survivors of cancer (AYASCa). This review followed Preferred Reporting
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The Association of Resilience with Psychosocial Outcomes in Teenagers and Young Adults with Cancer. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-08-29 Kathryn Hughes,Clare E H Jacobson,Grace Lavelle,Ewan Carr,Susie M D Henley
Purpose: There is limited research on the psychological impact of cancer for teenagers and young adults (TYAs) and the role of protective factors such as resilience. This study investigated associations between resilience and psychosocial outcomes in this group. Methods: Data were collected from TYAs (aged 16-24) who attended the TYA cancer clinic at Guy's Hospital between 2013 and 2021. Participants
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Implementation of a Pilot Clinic for Pediatric to Adult Cancer Survivorship Transitions. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-08-23 Alexander Hai Jin,Pamela J Simon,Alison Clayton,Catherine Benedict,Michaela Liedtke,Lori Muffly,Lidia Schapira,Stephanie M Smith
Childhood cancer survivors are recommended to have lifelong survivorship care, yet many become disengaged during pediatric to adult care transitions. We implemented a pilot clinic for adult survivors of pediatric or adolescent and young adult (AYA) leukemia transitioning to adult-focused survivorship care. The clinic featured AYA-specific care, bidirectional communication with primary care, and a quality
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Documentation of Infertility Risk Discussion in Cancer Patients Receiving Cancer-Directed Therapy: The UC Davis Cancer Center Experience. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-08-22 Colleen McCann,Natalie Kamiyama,Debra Burgess,Angela E Usher,Jeffrey Fine,Machelle Wilson,Andrea Iannucci,Gary S Leiserowitz,Marcio Malogolowkin
Purpose: A complication of cancer-directed therapy that often goes undiscussed is infertility. Although guidelines recommend addressing the possibility of infertility and fertility preservation approaches before initiating treatment, an internal review at our institution showed only 49% of female patients had infertility risk counseling documented. As a result, a fertility assessment communication
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Socioeconomic Status and Chronic Health Conditions in Asian Survivors of Adolescent and Young Adult Cancers. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-08-18 Amy M Berkman,Eunju Choi,Christabel K Cheung,John M Salsman,Susan K Peterson,Clark R Andersen,Qian Lu,J Andrew Livingston,Michelle A T Hildebrandt,Susan K Parsons,Michael E Roth
Purpose: While there are known disparities in socioeconomic status (SES) and health outcomes among racially and ethnically minoritized adolescent and young adult (AYA; ages 15-39 years at diagnosis) cancer survivors compared with White survivors, outcomes in the Asian survivor population are understudied. To better understand the association of an AYA cancer diagnosis with SES and health outcomes within
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A Midwest Stakeholder Evaluation of an Adolescent and Young Adult Cancer Survivor Needs Assessment Survey. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-08-11 Cathy Lee-Miller,Kathleen E Montgomery,Jane Evered,Kat Phelps,Kirsten Norslien,Amanda Parkes,Kristine Kwekkeboom
Purpose: Over 87,000 adolescents and young adults (AYAs) are diagnosed with cancer in the United States each year. Improvement in outcomes in the AYA population has lagged that of both younger and older patients. This decrement may be attributable to several factors, including insufficient supportive care services. Our team modified the Needs Assessment & Service Bridge (NA-SB) tool, utilizing an iterative
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Preliminary Effectiveness of an In-Hospital Peer Support Program, Adolescent and Young Adult Hiroba, on Anxiety in Adolescent and Young Adult Patients with Cancer. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-08-10 Takatoshi Hirayama,Rebekah Kojima,Ryoko Udagawa,Yuki Mashiko,Kazuko Matsumoto,Kyoka Ogata,Akie Shindo,Tomoko Mizuta,Yuko Ogawa,Ayako Kayano,Yuko Yanai,Hiroto Ishiki,Eriko Satomi
Purpose: Adolescent and young adult (AYA) patients with cancer have few opportunities to connect with patients of the same generation while hospitalized. Although anxiety is frequently reported by them, there are no reports on the psychological effectiveness of an in-hospital patient support program based on peer support. This study aimed to evaluate the effectiveness of a program, termed Adolescent
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Sexual Problems as Late Effects: Awareness and Information Needs Among 1870 Long-term Norwegian Childhood, Adolescent, and Young Adult Cancer Survivors (The NOR-CAYACS Study). J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-08-10 Ida K Holme,Henrikke A Hollund,Kathrine Vandraas,Cecilie E Kiserud,Kristin V Reinertsen,Jon Håvard Loge,Hanne Cathrine Lie
Purpose: Treatment-related sexual problems are common, but understudied, among survivors of Childhood, Adolescent, and Young Adult Cancer Survivors (CAYACS). We investigated awareness of, and information needs regarding, sexual problems as late effects in a nation-wide sample of long-term CAYACS. Methods: Five-year survivors were identified by the Cancer Registry of Norway, diagnosed between 1985 and
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Utilization of Teleconsent for Adolescent and Young Adult Cancer Clinical Trials, a Report from the Children's Oncology Group. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-08-04 Michael Terao,Nupur Mittal,Michael Roth,Aniket Saha,Leanne Super,Jennifer Reichek
Purpose: Adolescents and young adults (AYAs, ages 15-39 years) are underrepresented in oncology clinical trials. Reasons for this include accessibility of the trial and whether the trial is presented to AYAs. The coronavirus disease 2019 (COVID-19) pandemic not only amplified these enrollment challenges but also presented opportunities for improving the enrollment process through virtual methods such
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Challenges to Widespread Use of Fertility Preservation Facilities for Pediatric Cancer Patients in Japan. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-08-03 Tadashi Maezawa,Nao Suzuki,Hiroki Takeuchi,Mikiko Nishioka,Moe Hidaka,Atsushi Manabe,Yuhki Koga,Hiroshi Kawaguchi,Yoji Sasahara,Masahito Tachibana,Shotaro Iwamoto,Akihito Horie,Hidefumi Hiramatsu,Motohiro Kato,Miyuki Harada,Yuki Yuza,Masahiro Hirayama,Junko Takita,Tomoaki Ikeda,Kimikazu Matsumoto
Purpose: Although fertility preservation for pediatric cancer patients is becoming more widespread in Japan, some facilities do not provide sufficient information regarding fertility. This study aimed to elucidate the problems pertaining to the lack of information about fertility among patients. Methods: Based on a 2020 survey, seminars addressing fertility preservation were held from the Designated
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Experiences of Oncofertility Decision-Making and Care in a National Sample of Adolescent and Young Adult Cancer Patients and Parents. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-08-03 Aoife Glackin,Jennifer L Marino,Michelle Peate,Robyn McNeil,Lisa M Orme,Maria C McCarthy,Susan M Sawyer
Purpose: Cancer and its treatments are known to compromise fertility in adolescents and young adults (AYAs). The emotional burden of possible infertility is reduced in those who receive supportive oncofertility care. In legal minors, provision of health care must consider the legal context and desire that AYAs have for autonomous decision-making, together with their competence to make health decisions
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Gaps in Adolescent and Young Adult Cancer Education in Oncology Fellowship Training. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-07-21 Scott Moerdler,Adam S DuVall,Brandon Hayes-Lattin,Allison Grimes,Pinki K Prasad,John C Molina,Varun Monga,David R Freyer,Michael E Roth
Purpose: Adolescents and young adults (AYAs, 15-39 years) with cancer experience disparities in care and outcomes compared with older/younger patients. AYAs receive care from medical and pediatric oncologists, however, little is known about the extent of training fellows receive. This needs assessment evaluating current AYA oncology (AYA-O) education in pediatric and medical oncology fellowship programs
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A Systematic Review of the Psychosocial Measures Used in Teenage and Young Adult Cancer. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-07-21 Kathryn Hughes,Laura Blackett,Clare E H Jacobson,Susie M D Henley,Ewan Carr
Background: Teenagers and young adults (TYAs; ages 16-24 in the United Kingdom) with cancer have specific needs and experience worse physiological and psychological outcomes compared with pediatric and adult cancer. In the United Kingdom, psychosocial screening is a mandatory part of TYA care. However, there is a lack of age-appropriate and acceptable psychosocial measures for this population. This
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Exploration of Hope Among Young Adults with Cancer in Malaysia. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-06-30 Sahira Sabri,Nur Atikah Mohamed Hussin,Weng-Tink Chooi
Purpose: Hope is vital for cancer patients to cope with their illnesses. It is positively associated with better health outcomes, quality of life, and daily functioning. However, restoring hope after a cancer diagnosis can be challenging, especially for young adult cancer patients. This research aimed to investigate hope among young adults with cancer throughout their cancer experience and the exploration
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Guidelines for Caring for the Social Well-Being of Adolescents and Young Adults with Cancer in Australia. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-06-27 Clarissa E Schilstra,Ursula M Sansom-Daly,Sarah J Ellis,Toby N Trahair,Antoinette C Anazodo,Azhani Amiruddin,Toni Lindsay,Fiona Maguire,Claire E Wakefield,Suncica Lah,Elizabeth Bland,Kate Lenthen,Allison Rifkin,Adry Awan,Tiana Kittos,Nell Hanbury,Sofia Tsalidis,Pandora Patterson,Fiona McDonald,Joanna E Fardell
More than 1000 Australian adolescents and young adults (AYAs) are diagnosed with cancer annually. Many report unmet social well-being needs, which impact their mental health. Australian AYA cancer care providers lack guidance to address these needs well. We aimed to develop guidelines for caring for the social well-being of AYAs with cancer in Australia. Following the Australian National Health and
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Experiences of Family and Partner Support in Fertility Decision-Making Among Adolescents and Young Adults with Cancer: A National Australian Study. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-06-20 Jennifer L Marino,Michelle Peate,Robyn McNeil,Lisa M Orme,Maria C McCarthy,Aoife Glackin,Susan M Sawyer
Purpose: To understand how adolescents and young adults (AYAs) with cancer experience family and partner involvement in fertility preservation (FP) decision-making. Methods: As part of a nationally representative Australian cross-sectional study of 15-25-year olds with cancer, 196 participants (mean age 19.9 [standard deviation 3.2] years at diagnosis; 51% male) were surveyed regarding FP decision-making
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The Growing Burden of Cancer in Adolescent and Young Adults in Asia: A Call to Action. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-06-15 Monica Malik,Deepthi Valiyaveettil,Deepa M Joseph
Recent estimates suggest that the lower middle income countries in Asia carry the heaviest burden of cancer among adolescents and young adults (AYAs) (defined as age 15-39 years). A larger proportion of the population in Asia is aged 15-39 compared with the developed countries. This age group is different from the pediatric or the adult group in terms of physical, social, psychological, and financial
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Health Care Access Barriers and Self-Reported Health Among Adolescent and Young Adult Cancer Survivors. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-06-12 Clare Meernik,Caroline S Dorfman,Leah L Zullig,Allison J Lazard,Laura Fish,Laura Farnan,Hazel B Nichols,Kevin C Oeffinger,Tomi Akinyemiju
Purpose: Adolescents and young adult (AYA) cancer survivors (15-39 years at diagnosis) are at risk for treatment-related late effects but face barriers in accessing survivorship care. We examined the prevalence of five health care access (HCA) barriers: affordability, accessibility, availability, accommodation, and acceptability. Methods: We identified AYA survivors from the University of North Carolina
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Measurement Properties of Patient-Reported Outcome Measures for Adolescent and Young Adult Survivors of a Central Nervous System Tumor: A Systematic Review. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-06-12 Kate Law,Emily Harris,Martin G McCabe,Janelle Yorke,Sabine N van der Veer
Purpose: To identify and evaluate patient-reported outcome measures (PROMs) for assessing survivorship-related concepts for adolescent and young adult (AYA) survivors of central nervous system (CNS) tumors. Methods: We searched five electronic databases. Two researchers independently screened all titles for inclusion and used consensus-based standards for the selection of health measurement instruments
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Leaving a Legacy: Allied Health Professionals' Perceptions of Fertility Preservation and Posthumous Reproduction for Adolescent and Young Adults with a Poor Cancer Prognosis. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-06-09 Francesca Barrett,Amani Sampson,Lisa Campo-Engelstein,Arthur Caplan,Susan T Vadaparampil,Gwendolyn P Quinn
Purpose: To explore Allied Health Professionals' (AHPs) experiences with and perceptions of posthumous assisted reproduction (PAR) among adolescent and young adults (AYA, ages 15-39) with a poor cancer prognosis. Methods: We conducted a qualitative analysis of video-based 90-minute focus groups (FGs) of AHPs who participated in the Enriching Communication Skills for Health Professionals in Oncofertility
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Factors Associated With Adolescent and Young Adult Females Attending a Fertility Consultation Within 30 Days of a Cancer Diagnosis in Ontario, Canada. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-06-06 Charlene S Rae,Andrew Costa,Hsien Seow,Ronald D Barr
Purpose: To examine the factors associated with females attending a fertility consultation within 30 days of cancer diagnosis. Methods: This is a retrospective cohort study, including females, 15 to 39 years of age, diagnosed with cancer in Ontario, Canada. Administrative data were used from the Institute of Clinical and Evaluative Sciences for the period 2006 to 2019. A backward selection multivariate
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Caring for Children in Relation to Financial Hardship, Advance Care Planning, and Genetic Testing Among Adolescent and Young Adults with Cancer. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-06-01 Kelly R Tan,Clare Meernik,Chelsea Anderson,Allison M Deal,Stephanie Engel,Darios Getahun,Erin E Kent,Anne C Kirchhoff,Marilyn L Kwan,Sara Mitra,Eliza M Park,Andrew Smitherman,Chun R Chao,Lawrence Kushi,Hazel B Nichols
Purpose: When a cancer diagnosis coincides with caring for children, it may influence the financial impacts of cancer and decisions to pursue advance care planning (ACP) or genetic testing. We examined associations between caring for children and financial hardship, ACP, and genetic testing among female adolescent and young adult (AYA) cancer survivors in North Carolina and California. Methods: Participants
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Feasibility of an Electronic Patient-Reported Outcome Tool for Screening Distress and Supportive Care Needs of Adolescents and Young Adults with Cancer. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-05-26 Takatoshi Hirayama,Hiroto Ishiki,Yuko Yanai,Saki Horiguchi,Akiko Sugisawa,Jun Sato,Ryugo Kojima,Kaori Sato,Tomoko Mizuta,Rebekah Kojima,Ryoko Udagawa,Yuki Kojima,Eriko Satomi
Purpose: Although adolescent and young adult (AYA) cancer patients are digital natives and have high digital communication needs, previous studies of screening tools for AYAs have primarily used paper when measuring patient-reported outcomes (PROs). There are no reports on using an electronic PRO (ePRO) screening tool with AYAs. This study evaluated the feasibility of such a tool in clinical settings
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Beyond Medical Care: How Different National Models of Care Impact the Experience of Adolescent and Young Adult Cancer Patients. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-05-22 Pandora Patterson,Rebecca L Jacobsen,Fiona E J McDonald,Chaya M Pflugeisen,Kit Bibby,Catherine Fiona Macpherson,Kate Thompson,Andrew Murnane,Antoinette Anazodo,Ursula M Sansom-Daly,Michael P Osborn,Allan Hayward,Cindy Kok,Rebecca H Johnson
Patient experience is positively associated with clinical effectiveness, quality care, and patient safety. This study examines the experience of care of adolescents and young adult (AYA) cancer patients from Australia and the United States, allowing a comparison of patient experiences in the context of different national models of cancer care delivery. Participants (n = 190) were aged 15-29 years and
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Fertility Preservation Knowledge, Attitudes, and Self-Reported Behaviors of Resident Physicians. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-05-16 Vasanti Jhaveri,Celeste G Yergin,Alexis Jennings,Jessica Heft,Merry J Markham,Alice Rhoton-Vlasak
Purpose: Fertility preservation (FP) and family building are important considerations for quality survivorship for young cancer patients. Resident physicians across all specialties encounter reproductive-aged cancer patients. The purpose of this study was to assess resident physicians' attitudes and awareness about FP with the goal to identify specific educational gaps to direct future training. Methods:
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Development, Usability Testing, and Implementation Assessment of Cancer Related Infertility Score Predictor, an Online Cancer Related Infertility Risk Counseling Tool. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-05-12 Laura Nerb,Emily Yang,Dominique Exume,Anna Dornisch,Beth Zhou,Teresa Helsten,Bonnie N Kaiser,Sally A D Romero,H Irene Su
Purpose: Oncofertility counseling of female cancer patients lacks efficient access to tailored and valid infertility risk estimates to support shared decision-making on fertility preservation treatments. The objective was to develop, conduct user-centered design, and plan clinic-based implementation of the Cancer Related Infertility Score Predictor (CRISP), a web-based tool to support infertility risk
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Human Papilloma Virus Infection and Vaccine Knowledge Levels, Attitudes, Beliefs in University Students: Turkey and Ghana Comparison. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-05-10 Hawa Sulemana,Aysun Ardic
Purpose: Studies reported that early diagnosis, treatment, and prevention of cervical cancer are influenced by knowledge, beliefs, and attitude toward screening. This descriptive-comparative study aimed to assess human papilloma virus (HPV) knowledge, attitudes, and beliefs in university students and the affecting factors and to compare between Turkish and Ghanaian students. Methods: The sample consists
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Feasibility and Acceptability of a Virtual "Coping with Brain Fog" Intervention for Improving Cognitive Functioning in Young Adults with Cancer. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-05-08 Dhasni Muthumuni,Ian Scott,Harvey Max Chochinov,Alyson L Mahar,Sheila N Garland,Fiona Schulte,Pascal Lambert,Lisa Lix,Allan Garland,Sapna Oberoi
Purpose: Cancer-related cognitive deficits (CRCDs) are common among young adults (YAs) (ages: 18-39) with cancer and can be debilitating. We aimed to determine the feasibility and acceptability of a virtual Coping with Brain Fog intervention among YAs with cancer. Our secondary aims were to explore the intervention's effect on cognitive functioning and psychological distress. Methods: This prospective
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Investigation of Fertility Preservation Education Videos for Pediatric Patients Based on International and Historical Survey. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-05-08 Yuriko Iwahata,Seido Takae,Hideyuki Iwahata,Kimikazu Matsumoto,Masahiro Hirayama,Junko Takita,Atsushi Manabe,Yuko Cho,Tomoaki Ikeda,Tadashi Maezawa,Mitsuru Miyachi,Dai Keino,Tomoe Koizumi,Tetsuya Mori,Naoki Shimizu,Teresa K Woodruff,Nao Suzuki
Purpose: Recently, direct communication with children about cancer seems to have shifted, but little is known about communication regarding discussions of future infertility risk due to cancer therapy. This study conducted cross-cultural comparisons between Japan and the United States to clarify communication patterns about cancer notification and develop appropriate information about fertility issues
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Development and Validation of an Indicator for Oncofertility Care in Ontario, Canada, for Adolescents and Young Adults with Cancer. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-05-05 Charlene S Rae,Ronald D Barr,Hsien Seow,Andrew Costa
Introduction: There is a lack of metrics to monitor and evaluate fertility care in adolescents and young adults with cancer. This study evaluated the indicator "proportion of cases attending a fertility consult visit ≤30 days from diagnosis of cancer" using the National Quality Forum (NQF) criteria. Methods: This was a retrospective cohort study using administrative data available through the Institute
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Poor Sit-to-Stand Performance in Adolescent and Young Adult Patients with Sarcoma. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-05-04 Savannah V Wooten,Behrang Amini,J Andrew Livingston,Michelle A T Hildebrandt,Joya Chandra,Susan C Gilchrist,Michael Roth,Eugenie Kleinerman
Background: Adolescents and young adult (AYA) patients with sarcoma are at heightened risk of reduced physical capacity and disease-related weakness. Sit-to-stand (STS) performance correlates with lower extremity functionality and activities of daily living; however, little is known regarding the relationship between muscular status and STS performance in patients with sarcoma. This study assessed
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Developing a Comprehensive Adolescent and Young Adult Cancer Program: Lessons Learned from 7 Years of Growth and Progress. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-05-04 Emily R Haines,Lauren Lux,Jacob Stein,Catherine Swift,Melissa Matson,Julie Childers,Daniel Kleissler,Deborah K Mayer,Nicklaus Steiner,Lucy Steiner,Donald Rosenstein,Stuart Gold,Andrew B Smitherman
Purpose: Every year, nearly 100,000 adolescents and young adults (15-39 years, AYAs) are diagnosed with cancer in the United States and many have unmet physical, psychosocial, and practical needs during and after cancer treatment. In response to demands for improved cancer care delivery for this population, specialized AYA cancer programs have emerged across the country. However, cancer centers face
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What Are the Psychosocial Needs of Adolescents and Young Adults with Cancer? A Systematic Review of the Literature. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-05-02 Karen Neylon,Caoimhe Condren,Suzanne Guerin,Kathy Looney
Adolescents and young adults with cancer (AYACs) have become recognized as a unique group in recent years. The unique developmental context and related challenges of being a young person with a cancer diagnosis can lead to a distinct and diverse set of psychosocial issues. Existing research has attempted to explore these psychosocial needs and challenges and to develop appropriate and individualized
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Localized Synovial Sarcoma: A Population-Based Analysis of Treatment Patterns and Survival. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-04-27 Amisha Singh,Steven Thorpe,Theresa Keegan,Frances Maguire,Marcio Malogolowkin,Renata Abrahão,Sheri Spunt,Janai Carr-Asher,Elysia Alvarez
Purpose: Synovial sarcoma (SS) is a rare, high-grade soft tissue tumor that requires multidisciplinary and multimodal care with surgery, radiotherapy, and chemotherapy. We examined the impact of sociodemographic and clinical factors on treatment patterns and survival in localized SS patients. Methods: Adolescents and young adults (AYAs, 15-39 years) and older adults ("adults," ≥40 years) diagnosed
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Extramedullary Relapse of B Cell Acute Lymphoblastic Leukemia in Bilateral Breasts Treated with Whole Breast Radiotherapy. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-04-24 Vivek Ghosh,Swarnaditya Roy,Ekta Dhamija,Ruchi Rathore,Lalit Kumar,Ahitagni Biswas
Isolated extramedullary relapse of acute lymphoblastic leukemia (ALL) in the breast is extremely rare. We herein report a case of a 38-year-old female with B cell ALL, who had isolated extramedullary relapse initially in the left breast and subsequently in the right breast, 3 and 4 years, respectively, after hematopoietic allogenic stem cell transplantation. She was successfully salvaged with bilateral
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Adolescent Young Adult Acute Lymphoblastic Leukemia Survivors Develop Innovative Solutions for Unmet Needs. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-04-21 Tara Brown,Sunita Ramocan,Rebecca Block,Wendy Poage
Adolescent young adult (AYA) cancer survivors continue to have substantive unmet needs. Literature and insights from a task force of survivors, caregivers, and survivor advocates convened by Servier Pharmaceuticals indicate desires for peer created and provided support. This secondary data analysis of information from the task force identified unmet needs in five domains and solutions explored for
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Increasing Cancer in Adolescents and Young Adults: Cancer Types and Causation Implications. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-04-19 Archie Bleyer
Purpose: This study aimed to identify cancer incidence trends in the United States and globally in adolescents and young adults (AYAs) 15-39 years of age, by sex, and to speculate on causes for trend changes. Methods: For the United States, SEER*Stat was used to obtain average annual percent change (AAPC) trends in cancer incidence during the period 2000-2019 among 395,163 AYAs. For global data, the
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The Place of Sick Peers in Adolescents and Young Adults with Cancer: Advantage, Disadvantage, and What Makes Barriers to the Encounter. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-03-30 Jeff Phan,Valérie Laurence,Perrine Marec-Berard,Camille Cordero,Christèle Riberon,Cécile Flahault
Purpose: The appreciation of peer support can vary from one country to another due to the cultural and relational differences. This study explores what perceptions French adolescents and young adults (AYAs) in post-treatment for cancer have of the place of sick peers during their treatment and what can make barriers to meet them. Methods: A semistructured interview has been proposed 6 months after
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Leuprolide Protects Ovarian Reserve in Adolescents Undergoing Gonadotoxic Therapy. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-03-28 Alfonso Hoyos-Martinez,Michael E Scheurer,Wendy Allen-Rhoades,M Fatih Okcu,Vincent E Horne
Purpose: Treatment sequelae compromising reproductive health are highly prevalent in childhood cancer survivors, and a main determinant of health and quality of life. Follicular reserve determines ovarian function life span; thus, its preservation is important in the care of female survivors. Anti-Müllerian hormone (AMH) is a biomarker to measure functional ovarian reserve. We aimed to evaluate the
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Development of an Online Communication Skills Training Program for Oncologists Working with Adolescents and Young Adults. J. Adolesc. Young Adult Oncol. (IF 2.0) Pub Date : 2023-03-27 Masako Okamura,Maiko Fujimori,Eiichi Saito,Yuko Osugi,Nobuya Akizuki,Yosuke Uchitomi
There are two purposes to this study. The first purpose was to develop a communication skills training (CST) program for oncologists working with adolescents and young adults (AYA-CST). The second purpose was to evaluate the program's feasibility. The online AYA-CST program was a half-day workshop including a didactic lecture, role-playing with simulated patients and discussions in a small group. All