Skip to main content

Advertisement

Springer Nature Link
Log in

Sharing in care: engaging care partners in the care and communication of breast cancer patients

  • Clinical trial
  • Published:
Breast Cancer Research and Treatment Aims and scope Submit manuscript

Abstract

Purpose

Family is often overlooked in cancer care. We developed a patient–family agenda setting intervention to engage family in cancer care communication.

Methods

We conducted a pilot randomized controlled trial (NCT03283553) of patients on active treatment for breast cancer and their family “care partner.” Intervention dyads (n = 69) completed a self-administered checklist to clarify care partner roles, establish a shared visit agenda, and facilitate MyChart patient portal access. Control dyads (n = 63) received usual care. We assessed intervention acceptability and initial effects from post-visit surveys and MyChart utilization at 6 weeks.

Results

At baseline, most patients (89.4%) but few care partners (1.5%) were registered for MyChart. Most patients (79.4%) wanted their care partner to have access to their records and 39.4% of care partners reported accessing MyChart. In completing the checklist, patients and care partners endorsed active communication roles for the care partner and identified a similar visit agenda: most (> 90%) reported the checklist was easy, useful, and recommended it to others. At 6 weeks, intervention (vs control) care partners were more likely to be registered for MyChart (75.4% vs 1.6%; p < 0.001), to have logged in (43.5% vs 0%; p < 0.001) and viewed clinical notes (30.4% vs 0%; p < 0.001), but were no more likely to exchange direct messages with clinicians (1.5% vs 0%; p = 0.175). No differences in patients’ MyChart use were observed, but intervention patients more often viewed clinical notes (50.7% vs 9.5%; p < 0.001).

Conclusions

A patient–family agenda setting intervention was acceptable and affected online practices of cancer patients and care partners.

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

Access this article

Log in via an institution

Subscribe and save

Springer+ Basic
$34.99 /Month
  • Get 10 units per month
  • Download Article/Chapter or eBook
  • 1 Unit = 1 Article or 1 Chapter
  • Cancel anytime
Subscribe now

Buy Now

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

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2
Fig. 3

Similar content being viewed by others

Notes

  1. MyChart ® is a registered trademark of Epic Systems Corporation.

References

  1. Kent EE, Rowland JH, Northouse L et al (2016) Caring for caregivers and patients: research and clinical priorities for informal cancer caregiving. Cancer 122:1987–1995

    Article  PubMed  PubMed Central  Google Scholar 

  2. Hobbs GS, Landrum MB, Arora NK et al (2015) The role of families in decisions regarding cancer treatments. Cancer 121:1079–1087

    Article  PubMed  PubMed Central  Google Scholar 

  3. Laidsaar-Powell R, Butow P, Bu S et al (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 

  4. Siminoff LA, Dorflinger L, Agyemang A et al (2012) Oncologists’ assessments of lung cancer patient and family disagreements regarding treatment decision making. Lung Cancer 77(1):212–216

    Article  PubMed  PubMed Central  Google Scholar 

  5. Zhang AY, Zyzanski SJ, Siminoff LA (2010) Differential patient-caregiver opinions of treatment and care for advanced lung cancer patients. Soc Sci Med 70:1155–1158

    Article  PubMed  PubMed Central  Google Scholar 

  6. NASEM (2016) Families caring for an aging America. National Academies Press, Washington, DC

    Google Scholar 

  7. Litzelman K, Kent EE, Mollica M et al (2016) How does caregiver well-being relate to perceived quality of care in patients with cancer? Exploring associations and pathways. J Clin Oncol 34:3554–3561

    Article  PubMed  PubMed Central  Google Scholar 

  8. Hodges LJ, Humphris GM, Macfarlane G (2005) A meta-analytic investigation of the relationship between the psychological distress of cancer patients and their carers. Soc Sci Med 60:1–12

    Article  CAS  PubMed  Google Scholar 

  9. Wright AA, Zhang B, Ray A et al (2008) Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA J Am Med Assoc 300:1665–1673

    Article  CAS  Google Scholar 

  10. Northouse LL, Katapodi MC, Song L et al (2010) Interventions with family caregivers of cancer patients: meta-analysis of randomized trials. CA Cancer J Clin 60:317–339

    PubMed  PubMed Central  Google Scholar 

  11. Griffin JM, Meis LA, Macdonald R et al (2014) Effectiveness of family and caregiver interventions on patient outcomes in adults with cancer: a systematic review. J Gen Intern Med 29:1274–1282

    Article  PubMed  PubMed Central  Google Scholar 

  12. Delbanco T, Walker J, Bell SK et al (2012) Inviting patients to read their doctors’ notes: a quasi-experimental study and a look ahead. Ann Intern Med 157:461–470

    Article  PubMed  PubMed Central  Google Scholar 

  13. Ricciardi L, Mostashari F, Murphy J et al (2013) A national action plan to support consumer engagement via e-health. Health Aff 32:376–384

    Article  Google Scholar 

  14. Wolff JL, Kim V, Mintz S et al (2018) An environmental scan of shared access to the patient portal. J Am Med Inform Assoc JAMIA 25:408–412

    Article  PubMed  Google Scholar 

  15. Wolff JL, Darer JD, Berger A et al (2016) Inviting patients and care partners to read doctors’ notes: OpenNotes and shared access to electronic medical records. J Am Med Inform Assoc JAMIA 24:e116–e178

    Google Scholar 

  16. Wolff JL, Berger A, Clarke D et al (2016) Patients, care partners, and shared access to the patient portal: online practices at an integrated health system. J Am Med Inform Assoc JAMIA 23:1150–1158

    Article  PubMed  Google Scholar 

  17. Reed ME, Huang J, Brand R et al (2018) Communicating through a patient portal to engage family care partners. JAMA Intern Med 178:142–144

    Article  PubMed  Google Scholar 

  18. Mccleary NJ, Greenberg TL, Barysauskas CM et al (2018) Oncology patient portal enrollment at a comprehensive cancer center: a quality improvement initiative. J Oncol Pract 14:e451–e461

    Article  PubMed  Google Scholar 

  19. Wolff JL, Roter DL, Barron J et al (2014) A tool to strengthen the older patient-companion partnership in primary care: results from a pilot study. J Am Geriatr Soc 62:312–319

    Article  PubMed  PubMed Central  Google Scholar 

  20. Wolff JL, Roter DL, Boyd CM et al (2018) Patient-family agenda setting for primary care patients with cognitive impairment: the SAME page trial. J Gen Intern Med 33:1478–1486

    Article  PubMed  Google Scholar 

  21. Gobat N, Kinnersley P, Gregory JW et al (2015) What is agenda setting in the clinical encounter? Consensus from literature review and expert consultation. Patient Educ Couns 98:822–829

    Article  PubMed  Google Scholar 

  22. Hawley ST, Li Y, An LC et al (2018) Improving breast cancer surgical treatment decision making: the iCanDecide randomized clinical trial. J Clin Oncol 36:659–666

    Article  PubMed  PubMed Central  Google Scholar 

  23. Rodenbach RA, Brandes K, Fiscella K et al (2017) Promoting end-of-life discussions in advanced cancer: effects of patient coaching and question prompt lists. J Clin Oncol 35:842–851

    Article  PubMed  PubMed Central  Google Scholar 

  24. Clayton JM, Butow PN, Tattersall MH et al (2007) Randomized controlled trial of a prompt list to help advanced cancer patients and their caregivers to ask questions about prognosis and end-of-life care. J Clin Oncol 25:715–723

    Article  PubMed  Google Scholar 

  25. Shin DW, Cho J, Roter DL et al (2017) Attitudes toward family involvement in cancer treatment decision making: the perspectives of patients, family caregivers, and their oncologists. Psycho-oncology 26:770–778

    Article  PubMed  Google Scholar 

  26. Wolff JL, Roter DL (2008) Hidden in plain sight: medical visit companions as a quality of care resource for vulnerable older adults. Arch Intern Med 168:1409–1415

    Article  PubMed  Google Scholar 

  27. Wolff JL, Roter DL (2011) Family presence in routine medical visits: a meta-analytical review. Soc Sci Med 72:823–831

    Article  PubMed  PubMed Central  Google Scholar 

  28. Arroll B, Goodyear-Smith F, Crengle S et al (2010) Validation of PHQ-2 and PHQ-9 to screen for major depression in the primary care population. Ann Fam Med 8:348–353

    Article  PubMed  PubMed Central  Google Scholar 

  29. Lowe B, Wahl I, Rose M et al (2010) A 4-item measure of depression and anxiety: validation and standardization of the Patient Health Questionnaire-4 (PHQ-4) in the general population. J Affect Disord 122:86–95

    Article  PubMed  Google Scholar 

  30. Kroenke K, Spitzer RL, Williams JB et al (2007) Anxiety disorders in primary care: prevalence, impairment, comorbidity, and detection. Ann Intern Med 146:317–325

    Article  PubMed  Google Scholar 

  31. Wallace LS, Rogers ES, Roskos SE et al (2006) Brief report: screening items to identify patients with limited health literacy skills. J Gen Intern Med 21:874–877

    Article  PubMed  PubMed Central  Google Scholar 

  32. Brady MJ, Cella DF, Mo F et al (1997) Reliability and validity of the functional assessment of cancer therapy-breast quality-of-life instrument. J Clin Oncol 15:974–986

    Article  CAS  PubMed  Google Scholar 

  33. Wolff JL, Boyd CM (2015) A look at person-and family-centered care among older adults: results from a national survey. J Gen Intern Med 30:1497–1504

    Article  PubMed  PubMed Central  Google Scholar 

  34. Yun YH, Lee MK, Park S et al (2011) Use of a decision aid to help caregivers discuss terminal disease status with a family member with cancer: a randomized controlled trial. J Clin Oncol 29:4811–4819

    Article  PubMed  Google Scholar 

  35. De Souza JA, Yap B, Ratain MJ et al (2015) User beware: we need more science and less art when measuring financial toxicity in oncology. J Clin Oncol 33:1414–1415

    Article  PubMed  Google Scholar 

  36. Khera N (2014) Reporting and grading financial toxicity. J Clin Oncol 32:3337–3338

    Article  PubMed  Google Scholar 

  37. Anthony DL, Campos-Castillo C, Lim PS (2018) Who isn’t using patient portals and why? Evidence and implications from a national sample of US adults. Health Aff 37:1948–1954

    Article  Google Scholar 

  38. Epstein RM, Street RL Jr (2011) Shared mind: communication, decision making, and autonomy in serious illness. Ann Fam Med 9:454–461

    Article  PubMed  PubMed Central  Google Scholar 

  39. IOM (2014) Dying in America: improving quality and honoring individual preferences near the end of life. National Academy Press, Washington DC

    Google Scholar 

  40. Bernacki RE, Block SD, For the American College of Physicians High Value Care Task F (2014) Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med 174(12):1994–2003

    Article  PubMed  Google Scholar 

  41. Mack JW, Cronin A, Taback N et al (2012) End-of-life care discussions among patients with advanced cancer: a cohort study. Ann Intern Med 156:204–210

    Article  PubMed  PubMed Central  Google Scholar 

  42. Apatira L, Boyd EA, Malvar G et al (2008) Hope, truth, and preparing for death: perspectives of surrogate decision makers. Ann Intern Med 149:861–868

    Article  PubMed  PubMed Central  Google Scholar 

  43. Vig E, Starks H, Taylor J et al (2007) Surviving surrogate decision-making: what helps and hampers the experience of making medical decisions for others. J Gen Intern Med 22:1274–1279

    Article  PubMed  PubMed Central  Google Scholar 

  44. Cagle JG, Mcclymont KM, Thai JN et al (2016) “If you don’t know, all of a sudden, they’re gone”: caregiver perspectives about prognostic communication for disabled elderly adults. J Am Geriatr Soc 64:1299–1306

    Article  PubMed  PubMed Central  Google Scholar 

  45. Mack JW, Cronin A, Keating NL et al (2012) Associations between end-of-life discussion characteristics and care received near death: a prospective cohort study. J Clin Oncol 30:4387–4395

    Article  PubMed  PubMed Central  Google Scholar 

  46. Silveira MJ, Kim SY, Langa KM (2010) Advance directives and outcomes of surrogate decision making before death. N Engl J Med 362:1211–1218

    Article  CAS  PubMed  PubMed Central  Google Scholar 

Download references

Acknowledgements

The authors thank the following individuals without whom the study would not have been possible: Leena Aurora, Aamna Kabani, and Amy Guo for data collection; and the patients, care partners, and clinicians who participated in the study.

Funding

This study was supported by: Susan G. Komen Scholar Grant SAC170001 (ACW), 5R21AG049967 (JLW), P30CA006973, and P30AG048773. The sponsor of this research was not involved in study concept or design, recruitment of subjects, acquisition of data, data analysis or interpretation, or in the preparation of this manuscript.

Author information

Authors and Affiliations

  1. The Johns Hopkins University Bloomberg School of Public Health, Baltimore, MD, USA

    Jennifer L. Wolff, Jennifer Aufill, Diane Echavarria, JaAlah-Ai Heughan & Sydney M. Dy

  2. The Johns Hopkins University School of Medicine, Baltimore, MD, USA

    Kimberley T. Lee, Roisin M. Connolly, John H. Fetting, Danijela Jelovac, Katie Papathakis, Carol Riley, Vered Stearns, Elissa Thorner, Nelli Zafman, Howard P. Levy, Sydney M. Dy & Antonio C. Wolff

  3. The Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, Baltimore, MD, USA

    Kimberley T. Lee, Roisin M. Connolly, John H. Fetting, Danijela Jelovac, Vered Stearns, Sydney M. Dy & Antonio C. Wolff

  4. Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, 624 N. Broadway, Room 692, Baltimore, MD, 21205, USA

    Jennifer L. Wolff, Jennifer Aufill, Diane Echavarria, JaAlah-Ai Heughan & Sydney M. Dy

  5. Department of Oncology, Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, 201 N. Broadway, Viragh 10-289, Baltimore, MD, 21287, USA

    Kimberley T. Lee, Roisin M. Connolly, John H. Fetting, Danijela Jelovac, Katie Papathakis, Carol Riley, Vered Stearns, Elissa Thorner, Nelli Zafman & Antonio C. Wolff

Authors
  1. Jennifer L. Wolff
    View author publications

    You can also search for this author inPubMed Google Scholar

  2. Jennifer Aufill
    View author publications

    You can also search for this author inPubMed Google Scholar

  3. Diane Echavarria
    View author publications

    You can also search for this author inPubMed Google Scholar

  4. JaAlah-Ai Heughan
    View author publications

    You can also search for this author inPubMed Google Scholar

  5. Kimberley T. Lee
    View author publications

    You can also search for this author inPubMed Google Scholar

  6. Roisin M. Connolly
    View author publications

    You can also search for this author inPubMed Google Scholar

  7. John H. Fetting
    View author publications

    You can also search for this author inPubMed Google Scholar

  8. Danijela Jelovac
    View author publications

    You can also search for this author inPubMed Google Scholar

  9. Katie Papathakis
    View author publications

    You can also search for this author inPubMed Google Scholar

  10. Carol Riley
    View author publications

    You can also search for this author inPubMed Google Scholar

  11. Vered Stearns
    View author publications

    You can also search for this author inPubMed Google Scholar

  12. Elissa Thorner
    View author publications

    You can also search for this author inPubMed Google Scholar

  13. Nelli Zafman
    View author publications

    You can also search for this author inPubMed Google Scholar

  14. Howard P. Levy
    View author publications

    You can also search for this author inPubMed Google Scholar

  15. Sydney M. Dy
    View author publications

    You can also search for this author inPubMed Google Scholar

  16. Antonio C. Wolff
    View author publications

    You can also search for this author inPubMed Google Scholar

Corresponding authors

Correspondence to Jennifer L. Wolff or Antonio C. Wolff.

Ethics declarations

Conflict of interest

The authors declare that they have no conflict of interest.

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

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

Wolff, J.L., Aufill, J., Echavarria, D. et al. Sharing in care: engaging care partners in the care and communication of breast cancer patients. Breast Cancer Res Treat 177, 127–136 (2019). https://doi.org/10.1007/s10549-019-05306-9

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10549-019-05306-9

Keywords