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

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.

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The long-term impact of cancer: Evaluating psychological distress in adolescent and young adult cancer survivors in Switzerland

Psycho-Oncology ◽

10.1002/pon.4981 ◽

2019 ◽

Vol 28 (3) ◽

pp. 577-585 ◽

Cited By ~ 5

Author(s):

Gisela Michel ◽

Constanza François ◽

Erika Harju ◽

Silvia Dehler ◽

Katharina Roser

Keyword(s):

Psychological Distress ◽

Young Adult ◽

Cancer Survivors ◽

Adolescent And Young Adult ◽

Young Adult Cancer Survivors ◽

Adult Cancer Survivors ◽

Long Term Impact ◽

Young Adult Cancer

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

Supportive Care in Cancer ◽

10.1007/s00520-016-3157-7 ◽

2016 ◽

Vol 24 (8) ◽

pp. 3425-3436 ◽

Cited By ~ 15

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

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

Frontiers in Psychology ◽

10.3389/fpsyg.2021.688142 ◽

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.

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

PEDIATRICS ◽

10.1542/peds.2021-053127 ◽

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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Individualized exercise and the health of the AYA cancer survivor population

Proceedings of IMPRS ◽

10.18060/23444 ◽

2019 ◽

Vol 2 (1) ◽

Author(s):

Adam Corya ◽

Jacob Conroy ◽

Abigail Bolt ◽

Jessica Ricks ◽

Nicholas Kelly ◽

...

Keyword(s):

Oxidative Stress ◽

Young Adult ◽

Pilot Study ◽

Cancer Survivors ◽

Exercise Intervention ◽

Adolescent And Young Adult ◽

Young Adult Cancer Survivors ◽

Adult Cancer Survivors ◽

Young Adult Cancer

Background + Hypothesis Adolescent and young adult cancer survivors (AYACS: ages 15-39) have an 84.5% five-year survival rate.(1) AYACS have a 10 times greater risk to develop cardiac disease compared to healthy peers.(2) This is in part due to their lower physical activity.(3) Structured exercise in adult cancer survivors improves strength, fatigue, VO2, and antioxidant levels and it decreases markers of cellular damage(4, 5). AYACS could benefit similarly, reducing long-term health effects. Although evidence suggests exercise is beneficial in older cancer survivors, this has not been demonstrated in AYACS. We hypothesized that a 12-week one-on-one multi-modal, community-based exercise program would improve AYACS outcomes compared to baseline or inactive AYACS. The current study hopes to demonstrate the feasability of an exercise intervention in a community setting within Indianapolis. Methods Six individuals were included in a feasibility trial for a larger pilot study of 374 participants. On day 1, baseline assessments were performed for experimental outcomes: body composition, strength, flexibility, VO2peak, balance, plasma biomarkers, PA, psychological health, health-related quality of life, and fatigue. Mini reassessments were performed at week 5, measuring strength and VO2peak with an estimated 1-rep maximum and 6-minute Walk Test respectively; in the larger pilot study participants will be reassessed at weeks 12 and 24. Participants train for 60 minutes (20 cardio, 30 weights, 10 stretching) 3 times a week for 12 weeks, one-on-one with a cancer exercise specialist. Results The average change in VO2peak was +25.3% and in strength was +17.5% (no statistical analysis). Adherence was 90.9%. Conclusion + Potential impact This trial suggests the feasibility of a pilot larger study. The greatest limitation was that the population sample was not within the AYACS age range. However, as the goal was to show feasibility rather than to prove efficacy, the sample gave useful information. Sources (1-5) 1. Anderson C, Smitherman AB, Nichols HB. Conditional relative survival among long-term survivors of adolescent and young adult cancers. Cancer. 2018;124(14):3037-43. 2. Armstrong GT, Kawashima T, Leisenring W, Stratton K, Stovall M, Hudson MM, et al. Aging and risk of severe, disabling, life-threatening, and fatal events in the childhood cancer survivor study. J Clin Oncol. 2014;32(12):1218-27. 3. Wu YP, Yi J, McClellan J, Kim J, Tian T, Grahmann B, et al. Barriers and Facilitators of Healthy Diet and Exercise Among Adolescent and Young Adult Cancer Survivors: Implications for Behavioral Interventions. J Adolesc Young Adult Oncol. 2015;4(4):184-91. 4. Repka CP, Hayward R. Oxidative Stress and Fitness Changes in Cancer Patients after Exercise Training. Med Sci Sports Exerc. 2016;48(4):607-14. 5. Repka CP, Hayward R. Effects of an Exercise Intervention on Cancer-Related Fatigue and Its Relationship to Markers of Oxidative Stress. Integr Cancer Ther. 2018;17(2):503-10.

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Lasting effects of cancer and its treatment on employment and finances in adolescent and young adult cancer survivors

Cancer ◽

10.1002/cncr.31985 ◽

2019 ◽

Vol 125 (11) ◽

pp. 1908-1917 ◽

Cited By ~ 10

Author(s):

Tyler G. Ketterl ◽

Karen L. Syrjala ◽

Jacqueline Casillas ◽

Linda A. Jacobs ◽

Steven C. Palmer ◽

...

Keyword(s):

Young Adult ◽

Cancer Survivors ◽

Adolescent And Young Adult ◽

Young Adult Cancer Survivors ◽

Adult Cancer Survivors ◽

Young Adult Cancer

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Psychosocial, behavioral, and supportive interventions for pediatric, adolescent, and young adult cancer survivors: A systematic review and meta-analysis

Critical Reviews in Oncology/Hematology ◽

10.1016/j.critrevonc.2021.103291 ◽

2021 ◽

Vol 160 ◽

pp. 103291

Author(s):

Anao Zhang ◽

Kaipeng Wang ◽

Bradley Zebrack ◽

Chiu Yi Tan ◽

Emily Walling ◽

...

Keyword(s):

Systematic Review ◽

Young Adult ◽

Cancer Survivors ◽

Meta Analysis ◽

Adolescent And Young Adult ◽

Young Adult Cancer Survivors ◽

Adult Cancer Survivors ◽

Supportive Interventions ◽

Young Adult Cancer

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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)

Supportive Care in Cancer ◽

10.1007/s00520-020-05790-6 ◽

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.

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