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

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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Long-Term Follow-Up Guidelines and Organization of Long-Term Follow-Up Care for Childhood and Young Adult Cancer Survivors

Late Treatment Effects and Cancer Survivor Care in the Young ◽

10.1007/978-3-030-49140-6_44 ◽

2020 ◽

pp. 435-439

Author(s):

Thorsten Langer ◽

Jörn D. Beck ◽

Alex Stein ◽

Carsten Bokemeyer ◽

Judith Gebauer

Keyword(s):

Young Adult ◽

Cancer Survivors ◽

Young Adult Cancer Survivors ◽

Adult Cancer Survivors ◽

Follow Up Care ◽

Long Term Follow Up ◽

Young Adult Cancer

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Adherence to Children’s Oncology Group Long-Term Follow-up Guidelines among high-risk adolescent and young adult cancer survivors

Annals of Epidemiology ◽

10.1016/j.annepidem.2019.06.025 ◽

2019 ◽

Vol 36 ◽

pp. 68

Author(s):

H. Tanenbaum ◽

J. Wolfson ◽

L. Xu ◽

K. Cannavale ◽

S. Bhatia ◽

...

Keyword(s):

Young Adult ◽

High Risk ◽

Adolescent And Young Adult ◽

Oncology Group ◽

Young Adult Cancer Survivors ◽

Adult Cancer Survivors ◽

Long Term Follow Up ◽

Young Adult Cancer

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A worldwide collaboration to harmonize guidelines for the long-term follow-up of childhood and young adult cancer survivors: A report from the international late effects of Childhood Cancer Guideline Harmonization Group

Pediatric Blood & Cancer ◽

10.1002/pbc.24445 ◽

2012 ◽

Vol 60 (4) ◽

pp. 543-549 ◽

Cited By ~ 165

Author(s):

Leontien C.M. Kremer ◽

Renée L. Mulder ◽

Kevin C. Oeffinger ◽

Smita Bhatia ◽

Wendy Landier ◽

...

Keyword(s):

Young Adult ◽

Cancer Survivors ◽

Childhood Cancer ◽

Late Effects ◽

Young Adult Cancer Survivors ◽

Adult Cancer Survivors ◽

Long Term Follow Up ◽

Young Adult Cancer

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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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Follow-Up Care Provider Preferences of Adolescent and Young Adult Cancer Survivors

Journal of Adolescent and Young Adult Oncology ◽

10.1089/jayao.2017.0083 ◽

2018 ◽

Vol 7 (2) ◽

pp. 204-209 ◽

Cited By ~ 10

Author(s):

Joemy M. Ramsay ◽

Karely Mann ◽

Sapna Kaul ◽

Eduardo R. Zamora ◽

Rochelle R. Smits-Seemann ◽

...

Keyword(s):

Young Adult ◽

Cancer Survivors ◽

Care Provider ◽

Adolescent And Young Adult ◽

Young Adult Cancer Survivors ◽

Adult Cancer Survivors ◽

Follow Up Care ◽

Young Adult Cancer

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Does the Lightning Process Training Programme Reduce Chronic Fatigue in Adolescent and Young Adult Cancer Survivors? A Mixed-Methods Pilot Study

Cancers ◽

10.3390/cancers13164076 ◽

2021 ◽

Vol 13 (16) ◽

pp. 4076

Author(s):

Lena Fauske ◽

Øyvind S. Bruland ◽

Alv A. Dahl ◽

Aase Myklebostad ◽

Silje E. Reme

Keyword(s):

Mixed Methods ◽

Young Adult ◽

Cancer Survivors ◽

Chronic Fatigue ◽

Training Programme ◽

Adolescent And Young Adult ◽

Young Adult Cancer Survivors ◽

Adult Cancer Survivors ◽

Young Adult Cancer

Background: We report on a pilot intervention study exploring the efficacy of the Lightning Process® training programme for reducing chronic fatigue and improving health-related quality of life in cancer survivors. Methods: 13 adolescent and young adult cancer survivors previously treated for sarcoma or Hodgkin lymphoma were enrolled. A mixed-methods approach was applied. This involved the use of five validated patient-reported outcome measure (PROM) questionnaires at baseline and the three- and six-month follow-up points to obtain quantitative data. Semi-structured interviews were conducted after the intervention with emphasis on the participants’ experiences and outcomes. A reflexive thematic analysis was applied to the transcripts. Results: A significant reduction (p < 0.001) in the total fatigue score from baseline to the three- and six-month follow-up points was documented. The correlation coefficients between the various PROMs at baseline and the six-month follow-up point indicated considerable overlap between the measures. The qualitative findings of the interviews corresponded well with the PROM findings. Most participants experienced both less fatigue and explicit improvement in their energy level. The aspects of the intervention found to be particularly helpful were the theoretical rationale and the coping techniques mediated. Conclusion: These encouraging results here reported should be of interest to the general oncological community, although they require confirmation through a larger and controlled study.

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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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