Skip to main content

Advertisement

SpringerLink
Log in

The use of a patient-reported outcome questionnaire to assess cancer survivorship concerns and psychosocial outcomes among recent survivors

  • Original Article
  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

Purpose

Survivor distress is well represented in the literature, but less is known about survivors’ concerns and how these relate to adaptation. Using a newly designed Survivorship Concern Scale, we examined concerns and their relationship to psychosocial adaptation among recent breast cancer (BC) survivors.

Methods

One hundred forty-three stage 0–III BC survivors completed an online assessment including the Survivorship Concern Scale (0–3 scale; alpha = 0.91), unmet needs, quality of life (QoL), and anxiety and depressive symptoms within 1 year of end of treatment.

Results

Participants were predominately white (76%), middle-aged (51 years), married (70%), and college educated (79%). Eighty-two percent were stage I or II at diagnosis. Mean degree of survivorship concern was moderate (M = 1.75, SD = 0.70) though variable (range = 0.12–3.00). Survivorship concerns were not significantly related to disease, treatment, or demographic variables except income (p = 0.02). Degree of survivorship concern was significantly associated with all indices of psychosocial adaptation: unmet need (r = 0.50), physical and mental QoL (r = −0.32 and r = −0.32, respectively), depressive symptoms (r = 0.21), and anxiety symptoms (r = 0.51; all p < 0.001). Binary logistic regression suggested that each one-point increase in degree of average concern increased the odds for elevated depressive symptoms by 2.83 (p = 0.03) and increased the odds of elevated anxiety symptoms by 3.69 (p < 0.001).

Conclusions

Survivorship concerns in the year following treatment are moderate but variable. Concerns are associated with QoL, unmet need, and psychosocial adaptation. Adequately addressing concerns may be a way to improve psychosocial outcomes early in the survivorship trajectory.

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

Notes

  1. In initial analyses, we found income to relate significantly to both levels of survivor concerns and depressive symptoms, unmet need, and physical health component of the QoL measure. We reanalyzed these relationships controlling for income level and found no differences in outcome from the non-adjusted data, with the exception of the physical functioning subscale which was attenuated; therefore, the non-adjusted data is presented for ease of interpretation. No other demographic, disease, or treatment variables were associated with survivorship concerns (all p > 0.10).

References

  1. American Cancer Society (2015) Breast cancer facts & figures 2015–2016. Atlanta: American Cancer Society, Inc.

  2. Miller KD, Siegel RL, Lin CC et al (2016) Cancer treatment and survivorship statistics, 2016. CA Cancer J Clin 66(4):271–289

    Article  PubMed  Google Scholar 

  3. Kenyon M, Mayer DK, Owens AK (2014) Late and long-term effects of breast cancer treatment and surveillance management for the general practitioner. J Obstet Gynecol Neonatal Nurs 43(3):382–398

    Article  PubMed  Google Scholar 

  4. Hill DA, Horick NK, Isaacs C et al (2014) Long-term risk of medical conditions associated with breast cancer treatment. Breast Cancer Res Treat 145(1):233–243

    Article  PubMed  PubMed Central  Google Scholar 

  5. Akechi T, Uchida M, Nakaguchi T et al (2015) Difference of patient’s perceived need in breast cancer patients after diagnosis. Jpn J Clin Oncol 45(1):75–80

    Article  PubMed  Google Scholar 

  6. Mols F, Vingerhoets AJ, Coebergh JW, van de Poll-Franse LV (2005) Quality of life among long-term breast cancer survivors: a systematic review. Eur J Cancer 41(17):2613–2619

    Article  PubMed  Google Scholar 

  7. Hsu T, Ennis M, Hood N, Graham M, Goodwin PJ (2013) Quality of life in long-term breast cancer survivors. J Clin Oncol 31(28):3540–3548

    Article  PubMed  Google Scholar 

  8. Koch L, Jansen L, Herrmann A et al (2013) Quality of life in long-term breast cancer survivors—a 10-year longitudinal population-based study. Acta Oncol 52(6):1119–1128

    Article  PubMed  Google Scholar 

  9. Mitchell AJ, Ferguson DW, Gill J, Paul J, Symonds P (2013) Depression and anxiety in long-term cancer survivors compared with spouses and healthy controls: a systematic review and meta-analysis. Lancet Oncol 14(8):721–732

    Article  PubMed  Google Scholar 

  10. Koch L, Bertram H, Eberle A et al (2014) Fear of recurrence in long-term breast cancer survivors—still an issue. Results on prevalence, determinants, and the association with quality of life and depression from the cancer survivorship—a multi-regional population-based study. Psychooncology 23(5):547–554

    Article  PubMed  Google Scholar 

  11. Simard S, Thewes B, Humphris G et al (2013) Fear of cancer recurrence in adult cancer survivors: a systematic review of quantitative studies. J Cancer Surviv 7(3):300–322

    Article  PubMed  Google Scholar 

  12. Paul C, Sanson-Fisher R, Carey M (2013) Measuring psychosocial outcomes: is the consumer or the professional the best judge? Eur J Cancer Care (Engl) 22(3):281–288

    Article  CAS  Google Scholar 

  13. Sanson-Fisher R, Carey M, Paul C (2009) Measuring the unmet needs of those with cancer: a critical overview. Cancer Forum 33

  14. Guidance for Industry Patient-Reported Outcome Measures (2009) Use in medical product development to support labeling claims. Department of Health and Human Services Food and Drug Administration, Silver Spring, Maryland: U.S

    Google Scholar 

  15. Chen J, Ou L, Hollis SJ (2013) A systematic review of the impact of routine collection of patient reported outcome measures on patients, providers and health organisations in an oncologic setting. BMC Health Serv Res 13:211

    Article  PubMed  PubMed Central  Google Scholar 

  16. Kotronoulas G, Kearney N, Maguire R et al (2014) What is the value of the routine use of patient-reported outcome measures toward improvement of patient outcomes, processes of care, and health service outcomes in cancer care? A systematic review of controlled trials. J Clin Oncol 32(14):1480–1501

    Article  PubMed  Google Scholar 

  17. Tzelepis F, Sanson-Fisher RW, Zucca AC, Fradgley EA (2015) Measuring the quality of patient-centered care: why patient-reported measures are critical to reliable assessment. Patient Prefer Adherence 9:831–835

    Article  PubMed  PubMed Central  Google Scholar 

  18. Adler-Milstein J, DesRoches CM, Kralovec P et al (2015) Electronic health record adoption in US hospitals: progress continues, but challenges persist. Health Aff (Millwood) 34(12):2174–2180

    Article  Google Scholar 

  19. Berry DA, Cronin KA, Plevritis SK et al (2005) Effect of screening and adjuvant therapy on mortality from breast cancer. N Engl J Med 353(17):1784–1792

    Article  CAS  PubMed  Google Scholar 

  20. Allen JD, Savadatti S, Levy AG (2009) The transition from breast cancer ‘patient’ to ‘survivor’. Psychooncology 18(1):71–78

    Article  PubMed  Google Scholar 

  21. Griggs JJ, Sorbero ME, Mallinger JB et al (2007) Vitality, mental health, and satisfaction with information after breast cancer. Patient Educ Couns 66(1):58–66

    Article  PubMed  Google Scholar 

  22. Palmer SC, Vaughn DJ, Blauch AN, Pucci DA, Jacobs LA (2017) Patient-reported outcomes (PROs) in testicular cancer survivors (TCS): do unmet needs resolve with routine care?. Paper presented at: 2017 ASCO Quality Care Symposium2017; Orlando, FL

  23. Palmer S, DeMichele A, Schapira M et al (2016) Symptoms, unmet need, and quality of life among recent breast cancer survivors. JCSO 14(7):2–9

    Article  Google Scholar 

  24. Ware JE, Jr., Kosinisk M, Turner-Bowker DM, Gandek B (2002) User’s manual for the SF-12v2® health survey with a supplement documenting SF-12® health survey. Lincoln, RI: QualityMetric Incorporated

  25. Kazis L. The veterans SF-36 health status questionnaire: development and application in the veterans health administration. Med Outcomes Trust Monitor. 2000;5(1)

  26. Zigmond AS, Snaith RP (Jun 1983) The Hospital Anxiety and Depression Scale. Acta Psychiatr Scand 67(6):361–370

    Article  CAS  PubMed  Google Scholar 

  27. Bjelland I, Dahl AA, Haug TT, Neckelmann D (2002) The validity of the Hospital Anxiety and Depression Scale. An updated literature review. J Psychosom Res 52(2):69–77

    Article  PubMed  Google Scholar 

  28. Ewertz M, Jensen AB (Feb 2011) Late effects of breast cancer treatment and potentials for rehabilitation. Acta Oncol 50(2):187–193

    Article  PubMed  Google Scholar 

  29. Fallowfield L, Jenkins V (2014) Psychosocial/survivorship issues in breast cancer: are we doing better? J Natl Cancer Inst 107(1):335

    Article  PubMed  Google Scholar 

  30. Farrell C, Heaven C, Beaver K, Maguire P (2005) Identifying the concerns of women undergoing chemotherapy. Patient Educ Couns 56(1):72–77

    Article  PubMed  Google Scholar 

  31. Bazzell JL, Spurlock A, McBride M (2015) Matching the unmet needs of cancer survivors to resources using a shared care model. J Cancer Educ 30(2):312–318

    Article  PubMed  Google Scholar 

  32. Treanor C, Santin O, Mills M, Donnelly M (2013) Cancer survivors with self-reported late effects: their health status, care needs and service utilisation. Psychooncology 22(11):2428–2435

    Article  PubMed  Google Scholar 

  33. Mao JJ, Bowman MA, Stricker CT et al (2009) Delivery of survivorship care by primary care physicians: the perspective of breast cancer patients. J Clin Oncol 27(6):933–938

    Article  PubMed  Google Scholar 

  34. Burg MA, Adorno G, Lopez ED et al (2015) Current unmet needs of cancer survivors: analysis of open-ended responses to the American Cancer Society Study of Cancer Survivors II. Cancer 121(4):623–630

    Article  PubMed  Google Scholar 

  35. Ruland CM, Andersen T, Jeneson A et al (2013) Effects of an internet support system to assist cancer patients in reducing symptom distress: a randomized controlled trial. Cancer Nurs 36(1):6–17

    Article  PubMed  Google Scholar 

  36. Borosund E, Cvancarova M, Moore SM, Ekstedt M, Ruland CM (2014) Comparing effects in regular practice of e-communication and web-based self-management support among breast cancer patients: preliminary results from a randomized controlled trial. J Med Internet Res 16(12):e295

    Article  PubMed  PubMed Central  Google Scholar 

  37. Kadakia KC, Snyder CF, Kidwell KM et al (2016) Patient-reported outcomes and early discontinuation in aromatase inhibitor-treated postmenopausal women with early stage breast cancer. Oncologist 21(5):539–546

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  38. 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(4):761–772

    Article  CAS  PubMed  Google Scholar 

  39. Janz NK, Li Y, Beesley LJ, et al. (2016) Worry about recurrence in a multi-ethnic population of breast cancer survivors and their partners. Support Care Cancer

  40. Calhoun C, Helzlsouer KJ, Gallicchio L (2015) Racial differences in depressive symptoms and self-rated health among breast cancer survivors on aromatase inhibitor therapy. J Psychosoc Oncol 33(3):263–277

    Article  PubMed  Google Scholar 

  41. Maly RC, Liu Y, Liang LJ, Ganz PA (2015) Quality of life over 5 years after a breast cancer diagnosis among low-income women: effects of race/ethnicity and patient-physician communication. Cancer 121(6):916–926

    Article  PubMed  Google Scholar 

  42. Barg FK, Cronholm PF, Straton JB et al (2007) Unmet psychosocial needs of Pennsylvanians with cancer: 1986-2005. Cancer 110(3):631–639

    Article  PubMed  Google Scholar 

  43. Vodermaier A, Millman RD (2011) Accuracy of the Hospital Anxiety and Depression Scale as a screening tool in cancer patients: a systematic review and meta-analysis. Support Care Cancer 19(12):1899–1908

    Article  PubMed  Google Scholar 

  44. Boekhout AH, Maunsell E, Pond GR et al (2015) A survivorship care plan for breast cancer survivors: extended results of a randomized clinical trial. J Cancer Surviv 9(4):683–691

    Article  PubMed  Google Scholar 

  45. Nicolaije KA, Ezendam NP, Vos MC et al (2015) Impact of an automatically generated cancer survivorship care plan on patient-reported outcomes in routine clinical practice: longitudinal outcomes of a pragmatic, cluster randomized trial. J Clin Oncol 33(31):3550–3559

    Article  PubMed  Google Scholar 

Download references

Acknowledgements

This work was funded by the Abramson Cancer Center Translational Centers of Excellence in Breast Cancer, University of Pennsylvania.

Author information

Authors and Affiliations

  1. Abramson Cancer Center, University of Pennsylvania, Philadelphia, PA, USA

    Steven C. Palmer, Carrie T. Stricker, Angela M. DeMichele & Linda A. Jacobs

  2. Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA

    Angela M. DeMichele, Marilyn Schapira & Karen Glanz

  3. Department of Nursing, University of Pennsylvania, Philadelphia, PA, USA

    Karen Glanz

  4. Department of Medicine, University of Michigan, Ann Arbor, MI, USA

    Jennifer J. Griggs

Authors
  1. Steven C. Palmer
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Carrie T. Stricker
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Angela M. DeMichele
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Marilyn Schapira
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Karen Glanz
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Jennifer J. Griggs
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Linda A. Jacobs
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Steven C. Palmer.

Ethics declarations

Conflicts of interest

The authors declare that they have no conflict of interest.

Informed consent statement

Informed consent was obtained from all individual participants included in the study.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Research was approved by the University of Pennsylvania Institutional Review Board (Protocol #820346). This article does not contain any studies with animals performed by any of the authors.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Palmer, S.C., Stricker, C.T., DeMichele, A.M. et al. The use of a patient-reported outcome questionnaire to assess cancer survivorship concerns and psychosocial outcomes among recent survivors. Support Care Cancer 25, 2405–2412 (2017). https://doi.org/10.1007/s00520-017-3646-3

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-017-3646-3

Keywords

Search

Navigation