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Development and initial testing of TOGETHER-YA: an eHealth-delivered and group-based psychosocial intervention for young adult cancer survivors

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Abstract  

Purpose

This study aimed to (1) develop TOGETHER-YA, an e-Health-delivered and group-based health-related quality of life (HRQOL) intervention for young adult (YA) cancer survivors aged 18–39 (Part 1), and (2) determine its initial feasibility and acceptability in a single-arm pilot trial (Part 2).

Methods

TOGETHER-YA is a manualized, 10-week intervention for YA survivors that includes elements of relaxation training, cognitive-behavioral therapy, and health education. In Part 1, content was adapted from existing evidence-based interventions with feedback from YAs (N = 22) in four iterative focus groups. In Part 2, YA survivors (N = 11) participated in a single-arm pilot trial of TOGETHER-YA. Intervention groups were led by a trained facilitator over videoconference. Primary outcomes were feasibility (i.e., recruitment, session attendance, retention) and acceptability (i.e., participant satisfaction).

Results

Focus groups reacted positively to TOGETHER-YA and provided actionable recommendations for enhancing its relevance and acceptability, which were implemented. In initial testing, all feasibility and acceptability benchmarks were met; 58% of eligible YAs were recruited, participants attended M = 6 intervention sessions (SD = 3), and 82% of participants were retained post-intervention. On average, participants “agreed” to “strongly agreed” with positive statements about the weekly sessions and the overall program.

Conclusion

TOGETHER-YA was developed in collaboration with YA cancer survivors and found to be feasible and acceptable in initial testing. TOGETHER-YA is the first HRQOL intervention for a broad range of YA survivors that is eHealth-delivered for convenience and group-based for peer support. Future large-scale trials should test its efficacy for improving HRQOL.

Trial registration

NCT05048316, September 17, 2021; NCT05054569, September 23, 2021.

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Data availability

The data that support the findings of this study are available from the corresponding author upon reasonable request.

Code availability

Not applicable.

Abbreviations

CBSM:

Cognitive Behavioral Stress Management

CBT:

Cognitive-behavioral therapy

HE:

Health education

HRQOL:

Health-related quality of life

PI:

Principal investigator

RT:

Relaxation training

YA:

Young adult

References

  1. American Cancer Society (2020) Cancer Facts and Figures 2020 Special Section: cancer in adolescents and young adults. American Cancer Society, Atlanta, GA

    Google Scholar 

  2. Patterson P, McDonald FEJ, Zebrack B, Medlow S (2015) Emerging issues among adolescent and young adult cancer survivors. Semin Oncol Nurs 31(1):53–59

    Article  PubMed  Google Scholar 

  3. Parsons HM, Harlan LC, Lynch CF, Hamilton AS, Wu XC, Kato I et al (2012) Impact of cancer on work and education among adolescent and young adult cancer survivors. J Clin Oncol 30(19):2393–2400

    Article  PubMed  PubMed Central  Google Scholar 

  4. Kwak M, Zebrack BJ, Meeske KA, Embry L, Aguilar C, Block R et al (2013) Trajectories of psychological distress in adolescent and young adult patients with cancer: a 1-year longitudinal study. J Clin Oncol 31(17):2160–2166

    Article  PubMed  Google Scholar 

  5. D’Agostino NM, Edelstein K (2013) Psychosocial challenges and resource needs of young adult cancer survivors: implications for program development. J Psych Oncol 31(6):585–600

    Article  Google Scholar 

  6. DeRouen MC, Smith AW, Tao L, Bellizzi KM, Lynch CF, Parsons HM et al (2015) Cancer-related information needs and cancerʼs impact on control over life influence health-related quality of life among adolescents and young adults with cancer. Psychooncology 24(9):1104–1115

    Article  PubMed  PubMed Central  Google Scholar 

  7. Kent EE, Smith AW, Keegan TH, Lynch CF, Wu XC, Hamilton AS et al (2013) Talking about cancer and meeting peer survivors: social information needs of adolescents and young adults diagnosed with cancer. J Adolesc Young Adult Oncol 2(2):44–52

    Article  PubMed  PubMed Central  Google Scholar 

  8. Quinn GP, Gonçalves V, Sehovic I, Bowman ML, Reed DR (2015) Quality of life in adolescent and young adult cancer patients: a systematic review of the literature. Patient Relat Outcome Measures 6:19

    Article  Google Scholar 

  9. Sanford SD, Zhao F, Salsman JM, Chang VT, Wagner LI, Fisch MJ (2014) Symptom burden among young adults with breast or colorectal cancer. Cancer 120(15):2255–2263

    Article  PubMed  Google Scholar 

  10. Duncan M, Moschopoulou E, Herrington E, Deane J, Roylance R, Jones L et al (2017) Review of systematic reviews of non-pharmacological interventions to improve quality of life in cancer survivors. BMJ Open 7(11):e015860

    Article  PubMed  PubMed Central  Google Scholar 

  11. Thornton CP, Ruble K, Kozachik S (2020) Psychosocial interventions for adolescents and young adults with cancer: an integrative review. J Pediatr Oncol Nurs 37(6):408–422

    Article  PubMed  Google Scholar 

  12. Bradford NK, Chan RJ (2017) Health promotion and psychological interventions for adolescent and young adult cancer survivors: a systematic literature review. Cancer Treat Rev 55:57–70

    Article  PubMed  Google Scholar 

  13. Rabin C, Simpson N, Morrow K, Pinto B (2013) Intervention format and delivery preferences among young adult cancer survivors. Int J Behav Med 20(2):304–310

    Article  PubMed  Google Scholar 

  14. Benedict C, Victorson D, Love B, Fuehrer D, Lazard A, Saffer AJ et al (2018) The audacity of engagement: hearing directly from young adults with cancer on their attitudes and perceptions of cancer survivorship and cancer survivorship research. J Adolesc Young Adul 7(1):103–111

    Article  Google Scholar 

  15. Penedo FJ, Oswald LB, Kronenfeld JP, Garcia SF, Cella D, Yanez B (2020) The increasing value of eHealth in the delivery of patient-centred cancer care. Lancet Oncol 21(5):e240–e251

    Article  PubMed  PubMed Central  Google Scholar 

  16. Devine KA, Viola AS, Coups EJ, Wu YP (2018) Digital health interventions for adolescent and young adult cancer survivors. JCO Clin Cancer Inform 2:1–15

    Article  PubMed  Google Scholar 

  17. Oswald LB, Victorson DE, Fox RS (2021) Young adult cancer survivorsʼ preferences for supportive interventions. Psychooncology 30(6):982–985

    Article  PubMed  PubMed Central  Google Scholar 

  18. Bandura A (1986) Social foundations of thought and action: a social cognitive theory. Prentice-Hall, Englewood Cliffs, NJ

    Google Scholar 

  19. Graves KD (2003) Social cognitive theory and cancer patientsʼ quality of life: a meta-analysis of psychosocial intervention components. Health Psychol 22(2):210–219

    Article  PubMed  Google Scholar 

  20. Czajkowski SM, Powell LH, Adler N, Naar-King S, Reynolds KD, Hunter CM et al (2015) From ideas to efficacy: the ORBIT model for developing behavioral treatments for chronic diseases. Health Psychol 34(10):971–982

    Article  PubMed  PubMed Central  Google Scholar 

  21. Salsman JM, McLouth LE, Cohn M, Tooze JA, Sorkin M, Moskowitz JT (2020) A web-based, positive emotion skills intervention for enhancing posttreatment psychological well-being in young adult cancer survivors (EMPOWER): protocol for a single-arm feasibility trial. JMIR Res Protoc 9(5):e17078

    Article  PubMed  PubMed Central  Google Scholar 

  22. Antoni MH (2003) Stress management intervention for women with breast cancer: American Psychological Association

  23. Antoni MH, Lechner SC, Kazi A, Wimberly SR, Sifre T, Urcuyo KR et al (2006) How stress management improves quality of life after treatment for breast cancer. J Consult Clin Psychol 74(6):1143–1152

    Article  PubMed  PubMed Central  Google Scholar 

  24. Antoni MH, Wimberly SR, Lechner SC, Kazi A, Sifre T, Urcuyo KR et al (2006) Reduction of cancer-specific thought intrusions and anxiety symptoms with a stress management intervention among women undergoing treatment for breast cancer. Am J Psychiatry 163(10):1791–1797

    Article  PubMed  PubMed Central  Google Scholar 

  25. Penedo FJ, Dahn JR, Molton I, Gonzalez JS, Kinsinger D, Roos BA et al (2004) Cognitive-behavioral stress management improves stress-management skills and quality of life in men recovering from treatment of prostate carcinoma. Cancer 100(1):192–200

    Article  PubMed  Google Scholar 

  26. Penedo F, Molton I, Dahn J, Shen B-J, Kinsinger D, Traeger L et al (2006) A randomized clinical trial of group-based cognitive-behavioral stress management in localized prostate cancer: development of stress management skills improves quality of life and benefit finding. Ann Behav Med 31(3):261–270

    Article  PubMed  Google Scholar 

  27. Penedo FJ, Traeger L, Dahn J, Molton I, Gonzalez JS, Schneiderman N et al (2007) Cognitive Behavioral Stress Management intervention improves quality of life in Spanish monolingual Hispanic men treated for localized prostate cancer: results of a randomized controlled trial. Int J Behav Med 14(3):164–172

    Article  PubMed  Google Scholar 

  28. Penedo FJ, Fox RS, Oswald LB, Moreno PI, Boland CL, Estabrook R et al (2020) Technology-based psychosocial intervention to improve quality of life and reduce symptom burden in men with advanced prostate cancer: results from a randomized controlled trial. Int J Behav Med 27(5):490–505

    Article  PubMed  PubMed Central  Google Scholar 

  29. Stagl JM, Bouchard LC, Lechner SC, Blomberg BB, Gudenkauf LM, Jutagir DR et al (2015) Long-term psychological benefits of cognitive-behavioral stress management for women with breast cancer: 11-year follow-up of a randomized controlled trial. Cancer 121(11):1873–1881

    Article  PubMed  Google Scholar 

  30. Fox RS, Oswald LB, Fowler B, Carrera JB, Reichek J, Victorson D et al (2020) Understanding and enhancing support group participation among adolescent and young adult cancer survivors: the impact of integrating adolescent and young adult cancer navigation services. J Adolesc Young Adult Oncol 10(4):488–492

    Article  PubMed  Google Scholar 

  31. National Cancer Institute. Adolescent and Young Adult Health Outcomes and Patient Experience Study (AYA-HOPE) 2019 [updated December 4, 2019. Available from: https://healthcaredelivery.cancer.gov/aya/overview.html.

  32. Stupid Cancer. [Available from: https://stupidcancer.org/.

  33. Gale RC, Wu J, Erhardt T, Bounthavong M, Reardon CM, Damschroder LJ et al (2019) Comparison of rapid vs in-depth qualitative analytic methods from a process evaluation of academic detailing in the Veterans Health Administration. Implement Sci 14(1):11

    Article  PubMed  PubMed Central  Google Scholar 

  34. Bouchard LC, Yanez B, Dahn JR, Flury SC, Perry KT, Mohr DC et al (2018) Brief report of a tablet-delivered psychosocial intervention for men with advanced prostate cancer: acceptability and efficacy by race. Transl Behav Med 9(4):8

    Google Scholar 

  35. Victorson D, Murphy K, Benedict C, Horowitz B, Maletich C, Cordero E et al (2020) A randomized pilot study of mindfulness-based stress reduction in a young adult cancer sample: feasibility, acceptability, and changes in patient reported outcomes. Psychooncology 29(5):841–850

    Article  PubMed  PubMed Central  Google Scholar 

  36. Sansom-Daly UM, Wakefield CE, Bryant RA, Patterson P, Anazodo A, Butow P et al (2019) Feasibility, acceptability, and safety of the Recapture Life videoconferencing intervention for adolescent and young adult cancer survivors. Psychooncology 28(2):284–292

    Article  PubMed  Google Scholar 

  37. Sansom-Daly UM, Wakefield CE, Ellis SJ, McGill BC, Donoghoe MW, Butow P et al (2021) Online, group-based psychological support for adolescent and young adult cancer survivors: results from the recapture life randomized trial. Cancers (Basel) 13(10):2460

  38. Collins LM, Murphy SA, Strecher V (2007) The multiphase optimization strategy (MOST) and the sequential multiple assignment randomized trial (SMART): new methods for more potent eHealth interventions. Am J Prev Med 32(5 Suppl):S112–S118

    Article  PubMed  PubMed Central  Google Scholar 

Download references

Acknowledgements

The authors would like to gratefully acknowledge the young adult cancer survivors who participated in this study.

Funding

This study was supported in part by Institutional Research Grants from the American Cancer Society (IRG-174–173-22, PI: Oswald) (IRG-18–163-24, PI: Fox), the National Cancer Institute of the National Institutes of Health (R01-CA242849, PI: Salsman) (K08-CA247973, PI: Fox) (P30-CA076292), and the National Center for Advancing Translational Sciences of the National Institutes of Health (UL1-TR001422). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Author information

Authors and Affiliations

  1. Department of Health Outcomes and Behavior, Moffitt Cancer Center, MFC-HOB, 12902 USF Magnolia Drive, MFC-HOB, Tampa, FL, 33612, USA

    Laura B. Oswald, Lisa M. Gudenkauf, Danielle B. Tometich, Yvelise Rodriguez, Kelsey L. Scheel, Amarilis Nieves-Lopez, Heather S. L. Jim & Brian D. Gonzalez

  2. Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

    Madison Lyleroehr, Stacy D. Sanford, David Victorson & Rina S. Fox

  3. Department of Counseling, The Family Institute of Northwestern University, Evanston, IL, USA

    Grace E. Armstrong

  4. Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, IL, USA

    Stacy D. Sanford & David Victorson

  5. Department of Mental Health Law and Policy, University of South Florida, Tampa, FL, USA

    Nele Loecher

  6. Participant Research, Interventions, and Measurement Core, Moffitt Cancer Center, Tampa, FL, USA

    Carley Geiss

  7. Department of Psychology, University of Miami, Coral Gables, FL, USA

    Michael H. Antoni & Frank J. Penedo

  8. Cancer Control Research Program, Sylvester Comprehensive Cancer Center, FL, Miami, USA

    Michael H. Antoni & Frank J. Penedo

  9. Department of Individualized Cancer Management, Moffitt Cancer Center, Tampa, FL, USA

    Damon Reed

  10. Department of Pediatrics, University of Arizona College of Medicine, Tucson, AZ, USA

    Emmanuel Katsanis

  11. University of Arizona Cancer Center, Tucson, AZ, USA

    Emmanuel Katsanis & Rina S. Fox

  12. Department of Social Sciences and Health Policy, Wake Forest Baptist Comprehensive Cancer Center, Wake Forest University School of Medicine, Winston-Salem, NC, USA

    John M. Salsman

  13. University of Arizona College of Nursing, Tucson, AZ, USA

    Rina S. Fox

Authors
  1. Laura B. Oswald
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  2. Madison Lyleroehr
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  3. Lisa M. Gudenkauf
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  4. Grace E. Armstrong
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  5. Danielle B. Tometich
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  6. Stacy D. Sanford
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  7. Nele Loecher
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  8. Carley Geiss
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  9. Yvelise Rodriguez
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  10. Kelsey L. Scheel
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  11. Amarilis Nieves-Lopez
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  12. Heather S. L. Jim
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  13. Brian D. Gonzalez
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  14. Michael H. Antoni
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  15. Frank J. Penedo
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  16. Damon Reed
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  17. Emmanuel Katsanis
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  18. John M. Salsman
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  19. David Victorson
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  20. Rina S. Fox
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Contributions

Conceptualization and funding acquisition were led by Laura B. Oswald and Rina S. Fox. Project administration was performed by Laura B. Oswald, Madison Lyleroehr, Yvelise Rodriguez, and Rina S. Fox. Investigation was led by Madison Lyleroehr, Kelsey L. Scheel, and Amarilis Nieves-Lopez. Supervision was performed by Laura B. Oswald, Stacy D. Sanford, Heather S.L. Jim, Brian D. Gonzalez, Michael H. Antoni, Frank J. Penedo, Damon Reed, Emmanuel Katsanis, John M. Salsman, David Victorson, and Rina S. Fox. Madison Lyleroehr and Lisa M. Gudenkauf curated the data, and formal analyses were conducted by Madison Lyleroehr, Lisa M. Gudenkauf, Grace E. Armstrong, Nele Loecher, Carley Geiss, and Kelsey L. Scheel. Laura B. Oswald and Madison Lyleroehr led the data visualization. The first draft of the manuscript was written by Laura B. Oswald, Madison Lyleroehr, Lisa M. Gudenkauf, Carley Geiss, and Rina S. Fox, and all authors commented on subsequent versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Laura B. Oswald.

Ethics declarations

Competing interests

Dr. Jim is a consultant for RedHill BioPharma, Janssen Scientific Affairs, and Merck and has grant funding from Kite Pharma. Dr. Gonzalez is a consultant for SureMed Compliance and KemPharm, and an advisory board member for Elly Health, Inc. Dr. Antoni is a consultant for Blue Note Therapeutics and Atlantis Healthcare. Dr. Penedo is a consultant for Blue Note Therapeutics. Dr. Reed is a consultant for Springworks and Eisai. All other authors have no relevant financial or non-financial interests to disclose.

Ethics approval

This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by Advarra Institutional Review Board (Pro00000971) and Northwestern University’s Institutional Review Board (STU00214055).

Consent to participate

Informed consent to participate was obtained from all individual participants included in this study.

Consent for publication

All participants consented to having de-identified and aggregate study data published.

Conflict of interest

Dr. Jim is a consultant for RedHill BioPharma, Janssen Scientific Affairs, and Merck and has grant funding from Kite Pharma. Dr. Gonzalez is a consultant for SureMed Compliance and KemPharm, and an advisory board member for Elly Health, Inc. Dr. Antoni is a consultant for Blue Note Therapeutics and Atlantis Healthcare. Dr. Penedo is a consultant for Blue Note Therapeutics. Dr. Reed is a consultant for SpringWorks and Eisai. All other authors have no relevant financial or non-financial interests to disclose.

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Oswald, L.B., Lyleroehr, M., Gudenkauf, L.M. et al. Development and initial testing of TOGETHER-YA: an eHealth-delivered and group-based psychosocial intervention for young adult cancer survivors. Support Care Cancer 30, 10067–10076 (2022). https://doi.org/10.1007/s00520-022-07382-y

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