Skip to main content

Advertisement

SpringerLink
Log in

Understanding quality and equity: patient experiences with care in older adults diagnosed with hematologic malignancies

  • Original Paper
  • Published:
Cancer Causes & Control Aims and scope Submit manuscript

Abstract

Background

Oncology settings increasingly use patient experience data to evaluate clinical performance. Given that older patients with hematologic malignancies are a high-risk population, this study examined factors associated with patient-reported health care experiences during the first year of their cancer diagnosis.

Methods

Cross-sectional study using the 2000–2015 SEER-CAHPS® data to examine patient experiences of Medicare enrollees with a primary diagnosis of leukemia or lymphoma. The primary outcomes were three CAHPS assessments: overall care, personal doctor, and health plan overall. We estimated case-mix adjusted and fully adjusted associations between factors (i.e., clinical and sociodemographic) and the CAHPS outcomes using bivariate statistical tests and multiple linear regression.

Results

The final sample included 1,151 patients, with 431 diagnosed with leukemia and 720 diagnosed with lymphoma (median time from diagnosis to survey 6 months). Patients who completed the survey further apart from the diagnosis date reported significantly higher adjusted ratings of care overall (β .39, p = .008) than those closer to diagnosis. American Indian/Alaska Native, Asian, and Pacific Islander patients had lower adjusted ratings of care overall (β − .73, p = .003) than Non-Hispanic white patients. Multimorbidity was significantly associated with higher adjusted personal doctor ratings (β .26, p = .003).

Conclusions

Unfavorable patient experiences among older adults diagnosed with hematologic malignancies warrant targeted efforts to measure and improve care quality. Future measurement of experiences of cancer care soon after diagnosis, coupled with careful sampling of high-priority populations, will inform oncology leaders and clinicians on strategies to improve care for high-risk, high-cost populations.

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

Fig. 1
Fig. 2

Similar content being viewed by others

References

  1. Leukemia and Lymphoma Society (2019) Facts and statistics, general blood cancers. https://www.lls.org/facts-and-statistics/facts-and-statistics-overview/facts-and-statistics. Accessed 1 Feb 2020

  2. Rathnasabapathy R, Lancet JE (2003) Management of acute myelogenous leukemia in the elderly. Cancer Control 10(6):469–477. https://doi.org/10.1177/107327480301000605

    Article  PubMed  Google Scholar 

  3. Habermann TM, Weller EA, Morrison VA et al (2006) Rituximab-CHOP versus CHOP alone or with maintenance rituximab in older patients with diffuse large B-cell lymphoma. J Clin Oncol 24(19):3121–3127. https://doi.org/10.1200/JCO.2005.05.1003

    Article  CAS  PubMed  Google Scholar 

  4. American Cancer Society (2017) External beam radiation therapy. https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/radiation/external-beam-radiation-therapy.html. Accessed 25 Mar 2019

  5. Wagner EH, Aiello Bowles EJ, Greene SM et al (2010) The quality of cancer patient experience: perspectives of patients, family members, providers and experts. BMJ Qual Saf 19(6):484–489. https://doi.org/10.1136/qshc.2010.042374

    Article  Google Scholar 

  6. Crawford R, Sully K, Conroy R et al (2020) Patient-centered insights on treatment decision making and living with acute myeloid leukemia and other hematologic cancers. Patient 13(1):83–102. https://doi.org/10.1007/s40271-019-00384-9

    Article  PubMed  Google Scholar 

  7. Abel GA, Klepin HD (2018) Frailty and the management of hematologic malignancies. Blood 131(5):515–524. https://doi.org/10.1182/blood-2017-09-746420

    Article  CAS  PubMed  Google Scholar 

  8. Mollica MA (2017) Patient experiences of cancer care: scoping review, future directions, and introduction of a new data resource: surveillance epidemiology and end results-consumer assessment of healthcare providers and systems (SEER-CAHPS). Patient Exp J 4(1):103–121

    Article  Google Scholar 

  9. Agarwal AK, Hahn L, Merchant RM, Rosin R (2019) Handcrafting the patient experience. NEJM Catal. https://doi.org/10.1056/CAT.19.0618

    Article  Google Scholar 

  10. Blayney DW, Simon MK, Podtschaske B et al (2018) Critical lessons from high-value oncology practices. JAMA Oncol 4(2):164. https://doi.org/10.1001/jamaoncol.2017.3803

    Article  PubMed  Google Scholar 

  11. Howell DA, Smith AG, Jack A et al (2013) Time-to-diagnosis and symptoms of myeloma, lymphomas and leukaemias: a report from the haematological malignancy research network. BMC Hematol 13(1):9. https://doi.org/10.1186/2052-1839-13-9

    Article  PubMed  PubMed Central  Google Scholar 

  12. Howell DA, Hart RI, Smith AG, Macleod U, Patmore R, Roman E (2019) Disease-related factors affecting timely lymphoma diagnosis: a qualitative study exploring patient experiences. Br J Gen Pract 69(679):e134–e145. https://doi.org/10.3399/bjgp19X701009

    Article  PubMed  PubMed Central  Google Scholar 

  13. Gee GC, Ford CL (2011) Structural racism and health inequities. Du Bois Rev 8(1):115–132. https://doi.org/10.1017/S1742058X11000130

    Article  PubMed  PubMed Central  Google Scholar 

  14. Boyd R, Lindo E, Weeks L, McLemore M (2020) On racism: a new standard for publishing on racial health inequities. Health Aff Blog. https://doi.org/10.1377/hblog20200630.939347

    Article  Google Scholar 

  15. Hardeman RR, Karbeah J (2020) Examining racism in health services research: a disciplinary self-critique. Health Serv Res 55(S2):777–780. https://doi.org/10.1111/1475-6773.13558

    Article  PubMed  PubMed Central  Google Scholar 

  16. Chawla N, Urato M, Ambs A et al (2015) Unveiling SEER-CAHPS®: a new data resource for quality of care research. J Gen Intern Med 30(5):641–650. https://doi.org/10.1007/s11606-014-3162-9

    Article  PubMed  PubMed Central  Google Scholar 

  17. National Cancer Institute (2020) About the SEER program. SEER. https://seer.cancer.gov/about/overview.html. Accessed 20 Jan 2020

  18. Andersen RM (1995) Revisiting the behavioral model and access to medical care: does it matter? J Health Soc Behav 36(1):1. https://doi.org/10.2307/2137284

    Article  CAS  PubMed  Google Scholar 

  19. Centers for Medicare & Medicaid Services. (2019) Consumer assessment of healthcare providers & systems (CAHPS). https://www.cms.gov/Research-Statistics-Data-and-Systems/Research/CAHPS. Accessed 30 Jan 2020

  20. SEER-CAHPS® (2018) National Cancer Institute. https://healthcaredelivery.cancer.gov/seer-cahps/overview/description.html. Accessed 11 Dec 2018

  21. Morales LS, Elliott MN, Weech-Maldonado R, Hays RD (2001) Differences in CAHPS® adult survey reports and ratings by race and ethnicity: an analysis of the national CAHPS® benchmarking data 1.0. Health Serv Res 36(3):595–617

    CAS  PubMed  PubMed Central  Google Scholar 

  22. Paddison CAM, Elliott MN, Haviland AM et al (2013) Experiences of care among medicare beneficiaries with ESRD: medicare consumer assessment of healthcare providers and systems (CAHPS) survey results. Am J Kidney Dis 61(3):440–449. https://doi.org/10.1053/j.ajkd.2012.10.009

    Article  PubMed  Google Scholar 

  23. Quigley DD, Elliott MN, Setodji CM, Hays RD (2018) Quantifying magnitude of group-level differences in patient experiences with health care. Health Serv Res 53:3027–3051. https://doi.org/10.1111/1475-6773.12828

    Article  PubMed  PubMed Central  Google Scholar 

  24. Ayanian JZ, Zaslavsky AM, Arora NK et al (2010) Patients’ experiences with care for lung cancer and colorectal cancer: findings from the cancer care outcomes research and surveillance consortium. J Clin Oncol 28(27):4154–4161. https://doi.org/10.1200/JCO.2009.27.3268

    Article  PubMed  PubMed Central  Google Scholar 

  25. Survey Instruments and Specifications (2020) Medicare advantage and prescription drug plan CAHPS survey. https://ma-pdpcahps.org/en/survey-instruments-and-specifications/. Accessed 22 Apr 2020

  26. National Cancer Institute (2019) Site recode ICD-O-3. Surveillance, epidemiology, and end results program. https://seer.cancer.gov/siterecode/index.html. Accessed 25 Feb 2019

  27. Sterne JAC, White IR, Carlin JB et al (2009) Multiple imputation for missing data in epidemiological and clinical research: potential and pitfalls. BMJ 338:b2393–b2393. https://doi.org/10.1136/bmj.b2393

    Article  PubMed  PubMed Central  Google Scholar 

  28. Saunders CL, Abel GA, Lyratzopoulos G (2015) Inequalities in reported cancer patient experience by socio-demographic characteristic and cancer site: evidence from respondents to the English Cancer Patient Experience Survey. Eur J Cancer Care (Engl) 24(1):85–98. https://doi.org/10.1111/ecc.12267

    Article  CAS  Google Scholar 

  29. National Cancer Institute (2020) Case-mix adjustment guidance for SEER-CAHPS analyses. https://healthcaredelivery.cancer.gov/seer-cahps/researchers/adjustment_guidance.html. Accessed 20 Jan 2020

  30. Elliott MN, Haviland AM, Orr N, Hambarsoomian K, Cleary PD (2011) How do the experiences of medicare beneficiary subgroups differ between managed care and original medicare?: Experiences of medicare beneficiary subgroups. Health Serv Res 46(4):1039–1058. https://doi.org/10.1111/j.1475-6773.2011.01245.x

    Article  PubMed  PubMed Central  Google Scholar 

  31. Lines LM, Cohen J, Halpern MT, Smith AW, Kent EE (2019) Care experiences among dually enrolled older adults with cancer: SEER-CAHPS, 2005–2013. Cancer Causes Control 30(10):1137–1144. https://doi.org/10.1007/s10552-019-01218-7

    Article  PubMed  PubMed Central  Google Scholar 

  32. Anhang Price R, Elliott MN, Zaslavsky AM et al (2014) Examining the role of patient experience surveys in measuring health care quality. Med Care Res Rev 71(5):522–554. https://doi.org/10.1177/1077558714541480

    Article  PubMed  PubMed Central  Google Scholar 

  33. Systemic Therapy (2018) Cancer Treatments, Moffit Cancer Center. https://www.moffitt.org/treatments/systemic-therapy/. Accessed 30 Nov 2018

  34. Almeida AM, Ramos F (2016) Acute myeloid leukemia in the older adults. Leuk Res Rep 6:1–7. https://doi.org/10.1016/j.lrr.2016.06.001

    Article  PubMed  PubMed Central  Google Scholar 

  35. Gobbi PG, Broglia C, Di Giulio G et al (2004) The clinical value of tumor burden at diagnosis in Hodgkin lymphoma. Cancer 101(8):1824–1834. https://doi.org/10.1002/cncr.20568

    Article  PubMed  Google Scholar 

  36. Abel GA, Saunders CL, Lyratzopoulos G (2016) Post-sampling mortality and non-response patterns in the English Cancer Patient Experience Survey: Implications for epidemiological studies based on surveys of cancer patients. Cancer Epidemiol 41:34–41. https://doi.org/10.1016/j.canep.2015.12.010

    Article  PubMed  PubMed Central  Google Scholar 

  37. Nabulsi NA, Alobaidi A, Talon B et al (2020) Self-reported health and survival in older patients diagnosed with multiple myeloma. Cancer Causes Control 31(7):641–650. https://doi.org/10.1007/s10552-020-01305-0

    Article  PubMed  Google Scholar 

  38. Mollica MA, Weaver KE, McNeel TS, Kent EE (2018) Examining urban and rural differences in perceived timeliness of care among cancer patients: A SEER-CAHPS study: patient experiences: urban vs rural. Cancer 124(15):3257–3265. https://doi.org/10.1002/cncr.31541

    Article  PubMed  Google Scholar 

  39. Abel GA, Friese CR, Magazu LS et al (2008) Delays in referral and diagnosis for chronic hematologic malignancies: a literature review. Leuk Lymphoma 49(7):1352–1359. https://doi.org/10.1080/10428190802124281

    Article  PubMed  Google Scholar 

  40. Friese CR, Abel GA, Magazu LS, Neville BA, Richardson LC, Earle CC (2009) Diagnostic delay and complications for older adults with multiple myeloma. Leuk Lymphoma 50(3):392–400. https://doi.org/10.1080/10428190902741471

    Article  PubMed  PubMed Central  Google Scholar 

  41. Mohile SG, Dale W, Somerfield MR et al (2018) Practical assessment and management of vulnerabilities in older patients receiving chemotherapy: ASCO guideline for geriatric oncology. JCO 36(22):2326–2347. https://doi.org/10.1200/JCO.2018.78.8687

    Article  Google Scholar 

  42. Aldoss I, Forman SJ, Pullarkat V (2019) Acute lymphoblastic leukemia in the older adult. JOP 15(2):67–75. https://doi.org/10.1200/JOP.18.00271

    Article  PubMed  Google Scholar 

  43. Elliott MN, Edwards C, Angeles J, Hambarsoomians K, Hays RD (2005) Patterns of unit and item nonresponse in the CAHPS® hospital survey: unit and item nonresponse. Health Serv Res 40(6p2):2096–2119. https://doi.org/10.1111/j.1475-6773.2005.00476.x

    Article  PubMed  PubMed Central  Google Scholar 

  44. Elliott MN, Haviland AM, Kanouse DE, Hambarsoomian K, Hays RD (2009) Adjusting for subgroup differences in extreme response tendency in ratings of health care: impact on disparity estimates. Health Serv Res 44(2p1):542–561. https://doi.org/10.1111/j.1475-6773.2008.00922.x

    Article  PubMed  PubMed Central  Google Scholar 

  45. Halpern MT, Urato MP, Kent EE (2017) The health care experience of patients with cancer during the last year of life: analysis of the SEER-CAHPS data set: health care ratings in last year of Life. Cancer 123(2):336–344. https://doi.org/10.1002/cncr.30319

    Article  PubMed  Google Scholar 

  46. Farias AJ, Ochoa CY, Toledo G, Bang S-I, Hamilton AS, Du XL (2020) Racial/ethnic differences in patient experiences with health care in association with earlier stage at breast cancer diagnosis: findings from the SEER-CAHPS data. Cancer Causes Control 31(1):13–23. https://doi.org/10.1007/s10552-019-01254-3

    Article  PubMed  Google Scholar 

  47. Moorley C, Darbyshire P, Serrant L, Mohamed J, Ali P, Souza RD (2020) Dismantling structural racism: nursing must not be caught on the wrong side of history. J Adv Nurs 76(10):2450–2453. https://doi.org/10.1111/jan.14469

    Article  PubMed  Google Scholar 

  48. Evans MK, Rosenbaum L, Malina D, Morrissey S, Rubin EJ (2020) Diagnosing and treating systemic racism. N Engl J Med 383(3):274–276. https://doi.org/10.1056/NEJMe2021693

    Article  PubMed  Google Scholar 

  49. Simonds VW, Wallerstein N, Duran B, Villegas M (2013) Community-based participatory research: its role in future cancer research and public health practice. Prev Chronic Dis. https://doi.org/10.5888/pcd10.120205

    Article  PubMed  PubMed Central  Google Scholar 

  50. Sacks GD, Lawson EH, Dawes AJ et al (2015) Relationship between hospital performance on a patient satisfaction survey and surgical quality. JAMA Surg 150(9):858. https://doi.org/10.1001/jamasurg.2015.1108

    Article  PubMed  Google Scholar 

  51. Evensen CT, Yost KJ, Keller S et al (2019) Development and testing of the CAHPS cancer care survey. JOP. https://doi.org/10.1200/JOP.19.00039

    Article  PubMed  Google Scholar 

  52. CAHPS Surveys and Guidance (2018) agency for healthcare research and quality, Rockville, MD. https://www.ahrq.gov/cahps/surveys-guidance/index.html. Accessed 30 Nov 2018

  53. Pew Research Center (2019) Collecting survey data. Pew research center methods. https://www.pewresearch.org/methods/u-s-survey-research/collecting-survey-data/. Accessed 27 Mar 2019

Download references

Acknowledgments

The content was solely the responsibility of the authors and does not represent the official views of the American Cancer Society or the United States Department of Health and Human Services. We are grateful for Dr. Michelle Mollica and team at the SEER-CAHPS program at the National Cancer Institute.

Funding

Supported in part by the American Cancer Society Doctoral Degree Scholarship in Cancer Nursing (33507-DSCN-19-048-01-SCN), Hillman Scholars Program in Nursing Innovation, and the Jonas Nurse Scholars Program. Dr. Friese is supported by The University of Michigan Rogel Cancer Center (P30-CA-046592).

Author information

Authors and Affiliations

  1. School of Nursing, University of Michigan, 400 North Ingalls St., Ann Arbor, MI, 48109, USA

    Alex Fauer, Matthew A. Davis & Christopher R. Friese

  2. Medical School, University of Michigan, Ann Arbor, MI, USA

    Sung Won Choi, Lauren P. Wallner & Matthew A. Davis

  3. School of Public Health, University of Michigan, Ann Arbor, MI, USA

    Lauren P. Wallner & Christopher R. Friese

  4. Rogel Cancer Center, University of Michigan, Ann Arbor, MI, USA

    Alex Fauer, Sung Won Choi, Lauren P. Wallner & Christopher R. Friese

Authors
  1. Alex Fauer
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Sung Won Choi
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Lauren P. Wallner
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Matthew A. Davis
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Christopher R. Friese
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

AF and CRF performed conceptualization, funding acquisition, data curation, supervision, validation, and visualization. All authors involved in formal analysis, investigation, methodology, project administration, resources, software, writing of the original draft, review, and editing.

Corresponding author

Correspondence to Alex Fauer.

Ethics declarations

Conflict of interest

The authors declare that they have no conflicts of interest.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Fauer, A., Choi, S.W., Wallner, L.P. et al. Understanding quality and equity: patient experiences with care in older adults diagnosed with hematologic malignancies. Cancer Causes Control 32, 379–389 (2021). https://doi.org/10.1007/s10552-021-01395-4

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10552-021-01395-4

Keywords

Search

Navigation