scholarly journals Development of a questionnaire to understand the information needs of adolescent and young adult cancer survivors for life and long-term health following cancer treatment.

2021 ◽  
Vol 4 (1) ◽  
Author(s):  
Devin Gantzios-Cros ◽  
Tammy Sajdyk ◽  
Jamie Rengarger
Keyword(s):  
Social Media ◽  
Cancer Treatment ◽  
Information Needs ◽  
Adolescent And Young Adult ◽  
Young Adult Cancer Survivors ◽  
Life Years ◽  
Adult Cancer Survivors ◽  
Social Media Platforms ◽  
Areas Of Interest

Disease outcomes for adolescents and young adults (AYA: ages 15 – 39 years old) with cancer have improved significantly over the past four decades to over 80%. AYA survivors are a unique population who have decades of life years following cancer treatment and are at very high risk for developing chronic medical and mental health conditions. Unfortunately, there is gap by providers in providing information regarding expectations of long-term medical, cognitive, and psychosocial issues that may arise during their lifetime. The goal of this project was to understand the educational/informational needs of this unique population. In order to understand the type of information AYAs would like to know post-treatment, such as exercise, nutrition, and more, we developed a survey addressing key topics. The process of collecting data has begun and will be collected for an additional five months. Subsequently, data will be analyzed by our team to determine key areas of interest. We will then utilize social media platforms to target AYA survivors and disseminate educational information addressing those areas of interest. The overarching hypothesize is that minimizing the health information gap and increasing knowledge about survivorship in the AYA cancer population via an accepted social media platform will lead to a more informed population of survivors that can better address their life long healthcare.

scholarly journals Developing a Survey for Analyzing Attitudes of Adolescent and Young Adult Cancer Survivors Towards Diet, Exercise, and Social Media

2021 ◽  
Vol 4 (1) ◽  
Author(s):  
Samantha Rodriguez ◽  
Tammy Sajdyk ◽  
Jamie Renbarger
Keyword(s):  
Social Media ◽  
Young Adult ◽  
Cancer Survivors ◽  
Statistical Tests ◽  
Adolescent And Young Adult ◽  
Background Information ◽  
Chi Square ◽  
Young Adult Cancer Survivors ◽  
Adult Cancer Survivors

Background and Hypothesis: Due to improved multidrug treatments over the past 40 years, the 5-year survival rate for children diagnosed with cancer has increased from approximately 60% to 85%. However, these treatments also cause long-term health issues, so patients must be equipped with adequate information regarding potential future complications. Only 18% of survivors report follow-up visits to a physician to discuss reducing risks resulting from their cancer, thus, there is a huge gap in health education for this population. To address this gap, a questionnaire was developed to collect data on the critical concerns adolescent and young adult (AYA) survivors have regarding wellness. We hypothesize that this survey will allow for healthcare workers to have a greater understanding of the wellness needs of AYA cancer survivors and aid in the development of an educational program that can be delivered in a manner that is acceptable to the AYA survivor population.   Project Methods: A 5-point Likert scale survey was created to gather information on topics such as diet, exercise, body image, relationships, and social media. Additional questions that gather data on background information were also asked. This survey will be distributed to subjects who have recovered from cancer and are between the ages of 18 and 39. After data has been collected, statistical tests such as Spearman’s correlation and chi-square tests for independence will be used to find correlations.   Expected Results: Results from this survey will be useful in understanding the experiences of AYA cancer survivors, how they view their wellness needs, and how they prefer to receive healthcare information.  Potential Impact: The data from this study will inform oncology providers as to which health concerns the AYA survivor population find most important and how best to deliver that information so survivors can receive better management of their long-term health.  

scholarly journals Self-reported late effects and long-term follow-up care among 1889 long-term Norwegian Childhood, Adolescent, and Young Adult Cancer Survivors (the NOR-CAYACS study)

2020 ◽  
Author(s):  
A. V. Mellblom ◽  
C. E. Kiserud ◽  
C. S. Rueegg ◽  
E. Ruud ◽  
J. H. Loge ◽  
...  
Keyword(s):  
Young Adult ◽  
Late Effects ◽  
Adolescent And Young Adult ◽  
Young Adult Cancer Survivors ◽  
Adult Cancer Survivors ◽  
Follow Up Care ◽  
Long Term Follow Up ◽  
Young Adult Cancer

Abstract Purpose The majority of childhood, adolescent, and young adult cancer survivors (CAYACS) are at risk of late effects but may not receive long-term follow-up care for these. Here, we investigated (1) self-reported late effects, (2) long-term follow-up care, and (3) factors associated with receiving follow-up care in a population-based sample of Norwegian long-term CAYACS. Methods Survivors were identified by the Cancer Registry of Norway. All > 5-year survivors diagnosed between 1985 and 2009 with childhood cancer (CCS, 0–18 years old, excluding CNS), breast cancer (BC, stages I–III), colorectal cancer (CRC), leukemias (LEUK), non-Hodgkin lymphoma (NHL), or malignant melanoma (MM) at age 19–39 years were mailed a questionnaire (NOR-CAYACS study). Descriptive statistics and logistic regression models were used to analyze occurrence of late effects, long-term follow-up care for these, and associated factors. Results Of 2104 responding survivors, 1889 were eligible for analyses. Of these, 68% were females, with a mean age of 43 years at survey, on average 17 years since diagnosis, and diagnosed with CCS (31%), BC (26%), CRC (8%), NHL (12%), LEUK (7%), and MM (16%). Overall, 61.5% reported the experience of at least one late effect, the most common being concentration/memory problems (28.1%) and fatigue (25.2%). Sixty-nine percent reported not having received long-term follow-up care focusing on late effects. Lower age at survey (p = 0.001), higher education (p = 0.012), and increasing number of late effects (p = < 0.001) were associated with increased likelihood of follow-up care in the multivariate model. Conclusions The majority of survivors reported at least one late effect, but not receiving specific follow-up care for these. This indicates a need for structured models of long-term follow-up to ensure adequate access to care.

scholarly journals Perceived information provision and information needs in adolescent and young adult cancer survivors

2018 ◽  
Vol 28 (1) ◽  
pp. e12892 ◽  
Author(s):  
Salome Christen ◽  
Esther Weishaupt ◽  
Janine Vetsch ◽  
Corina S. Rueegg ◽  
Luzius Mader ◽  
...  
Keyword(s):  
Young Adult ◽  
Cancer Survivors ◽  
Information Needs ◽  
Information Provision ◽  
Adolescent And Young Adult ◽  
Young Adult Cancer Survivors ◽  
Adult Cancer Survivors ◽  
Young Adult Cancer

scholarly journals Beyond Premature Ovarian Insufficiency: Staging Reproductive Aging in Adolescent and Young Adult Cancer Survivors

2020 ◽  
Author(s):  
Alexa C O Medica ◽  
Brian W Whitcomb ◽  
Ksenya Shliakhsitsava ◽  
Andrew C Dietz ◽  
Kelsey Pinson ◽  
...  
Keyword(s):  
Young Adult ◽  
Cancer Survivors ◽  
Cancer Treatment ◽  
Adolescent And Young Adult ◽  
Reproductive Aging ◽  
Young Adult Cancer Survivors ◽  
Adult Cancer Survivors ◽  
Advanced Stages ◽  
Young Adult Cancer ◽  
Aging Stage

Abstract Context Although stages of reproductive aging for women in the general population are well described by STRAW+10 criteria, this is largely unknown for female adolescent and young adult cancer survivors (AYA survivors). Objective This work aimed to evaluate applying STRAW + 10 criteria in AYA survivors using bleeding patterns with and without endocrine biomarkers, and to assess how cancer treatment gonadotoxicity is related to reproductive aging stage. Design The sample (n = 338) included AYA survivors from the Reproductive Window Study cohort. Menstrual bleeding data and dried-blood spots for antimüllerian hormone (AMH) and follicle-stimulating hormone (FSH) measurements (Ansh DBS enzyme-linked immunosorbent assays) were used for reproductive aging stage assessment. Cancer treatment data were abstracted from medical records. Results Among participants, mean age 34.0 ± 4.5 years and at a mean of 6.9 ± 4.6 years since cancer treatment, the most common cancers were lymphomas (31%), breast (23%), and thyroid (17%). Twenty-nine percent were unclassifiable by STRAW + 10 criteria, occurring more frequently in the first 2 years from treatment. Most unclassifiable survivors exhibited bleeding patterns consistent with the menopausal transition, but had reproductive phase AMH and/or FSH levels. For classifiable survivors (48% peak reproductive, 30% late reproductive, 12% early transition, 3% late transition, and 7% postmenopause), endocrine biomarkers distinguished among peak, early, and late stages within the reproductive and transition phases. Gonadotoxic treatments were associated with more advanced stages. Conclusions We demonstrate a novel association between gonadotoxic treatments and advanced stages of reproductive aging. Without endocrine biomarkers, bleeding pattern alone can misclassify AYA survivors into more or less advanced stages. Moreover, a large proportion of AYA survivors exhibited combinations of endocrine biomarkers and bleeding patterns that do not fit the STRAW + 10 criteria, suggesting the need for modified staging for this population.

scholarly journals Preferences for the organization of long-term follow-up in adolescent and young adult cancer survivors

2016 ◽  
Vol 24 (8) ◽  
pp. 3425-3436 ◽  
Author(s):  
Salome Christen ◽  
Janine Vetsch ◽  
Luzius Mader ◽  
Silvia Dehler ◽  
Dimitri Korol ◽  
...  
Keyword(s):  
Young Adult ◽  
Cancer Survivors ◽  
Adolescent And Young Adult ◽  
Young Adult Cancer Survivors ◽  
Adult Cancer Survivors ◽  
Long Term Follow Up ◽  
Young Adult Cancer

scholarly journals Psychosocial Long-Term Effects of Young Adult Cancer Survivors: Study Protocol of the Longitudinal AYA-LE Long-Term Effects Study

2021 ◽  
Vol 12 ◽  
Author(s):  
Kristina Geue ◽  
Anja Mehnert-Theuerkauf ◽  
Isabelle Stroske ◽  
Hannah Brock ◽  
Michael Friedrich ◽  
...  
Keyword(s):  
Young Adults ◽  
Psychological Distress ◽  
Young Adult ◽  
Cancer Survivors ◽  
Cancer Patients ◽  
Adolescent And Young Adult ◽  
Long Term Effects ◽  
Young Adult Cancer Survivors ◽  
Adult Cancer Survivors

Background: About 3% of new cancer cases affect young adults aged between 15 and 39 years. The young age, the increasing incidence and the relatively good prognosis of this population lead to the growing importance to investigate the psychosocial long-term and late effects. The aims of the AYA-LE long-term effects study are: first, to assess the temporal course and related factors of life satisfaction and psychological distress of adolescent and young adult (AYA) cancer survivors; and second, to examine a specific topic in each of the yearly surveys in a more differentiated way.Methods: This study represents a continuation of the longitudinal AYA-LE study. The existing sample of AYA cancer patients (t1: N = 577; t2: N = 514; aged between 18 and 39 years at diagnosis; all major tumor entities) was extended by four further survey points (t3: 2018, t4: 2019, t5: 2020, t6: 2021). In addition, a comparison sample of young adults without cancer was collected. We measured longitudinal data for outcomes such as quality of life, psychological distress, and fatigue with standardized questionnaires. Furthermore, each survey point included a different cross-sectional topic (e.g., health behavior, occupational situation, and compliance).Discussion: The AYA-LE long-term effects study will show the long-term consequences of cancer in young adulthood. We expect at least complete data of 320 participants to be available after the sixth survey, which will be completed in 2021. This will provide a comprehensive and differentiated understanding of the life situation of young adults with cancer in Germany. The findings of our study enable a continuous improvement of the psychosocial care and specific survivorship programs for young cancer patients.

scholarly journals Long-term Follow-up Care for Childhood, Adolescent, and Young Adult Cancer Survivors

PEDIATRICS ◽  
2021 ◽  
Vol 148 (3) ◽  
pp. e2021053127
Author(s):  
Melissa M. Hudson ◽  
Smita Bhatia ◽  
Jacqueline Casillas ◽  
Wendy Landier
Keyword(s):  
Young Adult ◽  
Cancer Survivors ◽  
Adolescent And Young Adult ◽  
Young Adult Cancer Survivors ◽  
Adult Cancer Survivors ◽  
Follow Up Care ◽  
Long Term Follow Up ◽  
Young Adult Cancer
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