Skip to main content

Advertisement

SpringerLink
Log in

“Making My Own Decisions Sometimes”: A Pilot Study of Young Adult Cancer Survivors’ Perspectives on Medical Decision-Making

  • Published:
Journal of Cancer Education Aims and scope Submit manuscript

Abstract

This study aimed to provide a better understanding of the medical decision-making preferences and experiences of young adult survivors of pediatric, adolescent, and young adult cancers. We conducted key informant interviews and a cross-sectional mailed survey with young adult survivors (currently aged 18–39 years) of pediatric, adolescent, and young adult cancers in South Texas. Of the responding survivors, almost all wanted to be actively involved in medical decision-making, but preferences regarding family and doctor involvement varied. In open-ended responses, the most commonly reported concerns related to medical decision-making were feelings of uncertainty and fear of receiving bad news. Survivors reported that they desired more information in order to feel better about medical decision-making. Due to the variety of preferences regarding decision-making and who to include in the process, physicians should be prepared to ask and accommodate patients regarding their decision-making preferences.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Smith MA, Altekruse SF, Adamson PC, Reaman GH, Seibel NL (2014) Declining childhood and adolescent cancer mortality. Cancer 120:2497–2506

    Article  PubMed  PubMed Central  Google Scholar 

  2. Fegran L, Hall EO, Uhrenfeldt L, Aagaard H, Ludvigsen MS (2014) Adolescents’ and young adults’ transition experiences when transferring from paediatric to adult care: a qualitative metasynthesis. Int J Nurs Stud 51:123–135

    Article  PubMed  Google Scholar 

  3. Sobota AE, Umeh E, Mack JW (2015) Young adult perspectives on a successful transition from pediatric to adult care in sickle cell disease. J Hematol Res 2:17–24

    Article  PubMed  PubMed Central  Google Scholar 

  4. Paine CW, Stollon NB, Lucas MS, Brumley LD, Poole ES, Peyton T, Grant AW, Jan S, Trachtenberg S, Zander M, Mamula P, Bonafide CP, Schwartz LA (2014) Barriers and facilitators to successful transition from pediatric to adult inflammatory bowel disease care from the perspectives of providers. Inflamm Bowel Dis 20:2083–2091

    Article  PubMed  PubMed Central  Google Scholar 

  5. Reust CE, Mattingly S (1996) Family involvement in medical decision making. Fam Med 28:39–45

    CAS  PubMed  Google Scholar 

  6. Schafer C, Putnik K, Dietl B, Leiberich P, Loew TH, Kolbl O (2006) Medical decision-making of the patient in the context of the family: results of a survey. Support Care Cancer: Off J Multinat Assoc Support Care Cancer 14:952–959

    Article  Google Scholar 

  7. Laidsaar-Powell R, Butow P, Bu S, Charles C, Gafni A, Fisher A, Juraskova I (2016) Family involvement in cancer treatment decision-making: a qualitative study of patient, family, and clinician attitudes and experiences. Patient Educ Couns 99:1146–1155

    Article  PubMed  Google Scholar 

  8. Laidsaar-Powell RC, Butow PN, Bu S, Charles C, Gafni A, Lam WW, Jansen J, McCaffery KJ, Shepherd HL, Tattersall MH, Juraskova I (2013) Physician-patient-companion communication and decision-making: a systematic review of triadic medical consultations. Patient Educ Couns 91:3–13

    Article  CAS  PubMed  Google Scholar 

  9. Phillips F, Jones BL (2014) Understanding the lived experience of Latino adolescent and young adult survivors of childhood cancer. J Cancer Surviv : Res Pract 8:39–48

    Article  Google Scholar 

  10. Ressler IB, Cash J, McNeill D, Joy S, Rosoff PM (2003) Continued parental attendance at a clinic for adult survivors of childhood cancer. J Pediatr Hematol Oncol 25:868–873

    Article  PubMed  Google Scholar 

  11. Kinahan KE, Sharp LK, Arntson P, Galvin K, Grill L, Didwania A (2008) Adult survivors of childhood cancer and their parents: experiences with survivorship and long-term follow-up. J Pediatr Hematol Oncol 30:651–658

    Article  PubMed  Google Scholar 

  12. Smith AW, Bellizzi KM, Keegan TH, Zebrack B, Chen VW, Neale AV, Hamilton AS, Shnorhavorian M, Lynch CF (2013) Health-related quality of life of adolescent and young adult patients with cancer in the United States: the adolescent and young adult health outcomes and patient experience study. J Clin Oncol : Off J Am Soc Clin Oncol 31:2136–2145

    Article  Google Scholar 

  13. Centers for Disease Control and Prevention (CDC). (2014) Behavioral risk factor surveillance system survey questionnaire

  14. Degner LF, Sloan JA, Venkatesh P (1997) The Control Preferences Scale. Can J Nurs Res = Rev Can Rech Sci Infirm 29:21–43

    CAS  Google Scholar 

  15. Forman J, Damschroder L (2008) Qualitative content analysis. In: Jacoby L, Siminoff LA (eds) Empirical methods for bioethics: a primer. JAI Press, New York, p 39–62

  16. Say R, Murtagh M, Thomson R (2006) Patients’ preference for involvement in medical decision making: a narrative review. Patient Educ Couns 60:102–114

    Article  PubMed  Google Scholar 

  17. Robinson A, Thomson R (2001) Variability in patient preferences for participating in medical decision making: implication for the use of decision support tools. Qual Health Care 10:i34–i38

    Article  PubMed  PubMed Central  Google Scholar 

  18. Weaver MS, Baker JN, Gattuso JS, Gibson DV, Sykes AD, Hinds PS (2015) Adolescents’ preferences for treatment decisional involvement during their cancer. Cancer 121:4416–4424

    Article  PubMed  Google Scholar 

  19. Zebrack B, Isaacson S (2012) Psychosocial care of adolescent and young adult patients with cancer and survivors. J Clin Oncol 30:1221–1226

    Article  PubMed  Google Scholar 

  20. Li N, Jayasinghe Y, Kemertzis MA, Moore P, Peate M (2016) Fertility preservation in pediatric and adolescent oncology patients: the decision-making process of parents. J Adolesc Young Adult Oncol 6:213–222

    Article  PubMed  Google Scholar 

  21. Mack JW, Cronin A, Fasciano K, Block SD, Keating NL (2016) Cancer treatment decision-making among young adults with lung and colorectal cancer: a comparison with adults in middle age. Psycho-Oncology 25:1085–1091

    Article  PubMed  Google Scholar 

  22. Gianinazzi ME, Essig S, Rueegg CS, von der Weid NX, Brazzola P, Kuehni CE, Michel G, for the Swiss Paediatric Oncology Group (SPOG) (2014) Information provision and information needs in adult survivors of childhood cancer. Pediatr Blood Cancer 61:312–318

    Article  PubMed  Google Scholar 

  23. Husson O, Mols F, van de Poll-Franse LV (2011) The relation between information provision and health-related quality of life, anxiety and depression among cancer survivors: a systematic review. Ann Oncol 22:761–772

    Article  CAS  PubMed  Google Scholar 

  24. Keegan THM, Lichtensztajn DY, Kato I, Kent EE, Wu XC, West MM, Hamilton AS, Zebrack B, Bellizzi KM, Smith AW, the AYA HOPE Study Collaborative Group (2012) Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study. J Cancer Surviv : Res Pract 6:239–250

    Article  Google Scholar 

  25. Jabson JM, Bowen DJ (2013) Cancer treatment summaries and follow-up care instructions: which cancer survivors receive them? Cancer Causes Control: CCC 24:861–871

    Article  PubMed  Google Scholar 

  26. Sabatino SA, Thompson TD, Smith JL, Rowland JH, Forsythe LP, Pollack L, Hawkins NA (2013) Receipt of cancer treatment summaries and follow-up instructions among adult cancer survivors: results from a national survey. J Cancer Surviv : Res Pract 7:32–43

    Article  Google Scholar 

  27. Nathan PC, Daugherty CK, Wroblewski KE, Kigin ML, Stewart TV, Hlubocky FJ, Grunfeld E, Giudice MED, Ward L-AE, Galliher JM, Oeffinger KC, Henderson TO (2013) Family physician preferences and knowledge gaps regarding the care of adolescent and young adult survivors of childhood cancer. J Cancer Surviv 7:275–282

    Article  PubMed  Google Scholar 

  28. Smits-Seemann RR, Kaul S, Zamora ER, Wu YP, Kirchhoff AC (2017) Barriers to follow-up care among survivors of adolescent and young adult cancer. J Cancer Surviv : Res Pract 11:126–132

    Article  Google Scholar 

  29. Epstein R, Street R Jr (2007) Patient-centered communication in cancer care: promoting healing and reducing suffering. National Cancer Institute, NIH Publication No. 07-6225, Bethesda

    Google Scholar 

  30. Rabin C, Horowitz S, Marcus B (2013) Recruiting young adult cancer survivors for behavioral research. J Clin Psychol Med Settings 20:33–36

    Article  PubMed  PubMed Central  Google Scholar 

Download references

Acknowledgements

This research was supported by an Infrastructure Grant from the St. Baldrick’s Foundation. HM Parsons was supported by a National Cancer Institute Cancer Prevention and Control Career Development Award (K07 CA175063). LA Shay was supported by a National Cancer Institute Cancer Education and Career Development Postdoctoral Fellowship Award (R25 CA57712). S Schmidt is supported by the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant KL2 TR001118.

Author information

Authors and Affiliations

  1. UTHealth School of Public Health in San Antonio, 7411 John Smith Dr., Suite 1100, San Antonio, TX, 78229, USA

    L. Aubree Shay & Stephanie D. Cornell

  2. University of Texas Health Science Center San Antonio, San Antonio, TX, USA

    Susanne Schmidt & Stephanie D. Cornell

  3. University of Minnesota School of Public Health, Minneapolis, MN, USA

    Helen M. Parsons

Authors
  1. L. Aubree Shay
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Susanne Schmidt
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Stephanie D. Cornell
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Helen M. Parsons
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to L. Aubree Shay.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Shay, L.A., Schmidt, S., Cornell, S.D. et al. “Making My Own Decisions Sometimes”: A Pilot Study of Young Adult Cancer Survivors’ Perspectives on Medical Decision-Making. J Canc Educ 33, 1341–1346 (2018). https://doi.org/10.1007/s13187-017-1256-x

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s13187-017-1256-x

Keywords

Search

Navigation