Hostname: page-component-8448b6f56d-mp689 Total loading time: 0 Render date: 2024-04-23T07:24:09.770Z Has data issue: false hasContentIssue false
  • English
  • Français

“There were more decisions and more options than just yes or no”: Evaluating a decision aid for advanced cancer patients and their family caregivers

Published online by Cambridge University Press:  12 August 2016

Marie Bakitas ,
J. Nicholas Dionne-Odom ,
Lisa Jackson ,
Jennifer Frost ,
Margaret F. Bishop  and
Zhongze Li
Marie Bakitas*
Affiliation:
School of Nursing, The University of Alabama at Birmingham, Birmingham, Alabama Department of Medicine, Division of Gerontology, Geriatrics, and Palliative Care, The University of Alabama at Birmingham, Birmingham, Alabama
J. Nicholas Dionne-Odom
Affiliation:
School of Nursing, The University of Alabama at Birmingham, Birmingham, Alabama
Lisa Jackson
Affiliation:
School of Human Ecology, University of Wisconsin, Madison, Wisconsin
Jennifer Frost
Affiliation:
School of Nursing, The University of Alabama at Birmingham, Birmingham, Alabama
Margaret F. Bishop
Affiliation:
Department of Palliative Care, Martha Jefferson Hospital, Charlottesville, Virginia
Zhongze Li
Affiliation:
Biostatistics Shared Resource, Norris Cotton Cancer Center, Lebanon, New Hampshire
*
Address correspondence and reprint requests to: Marie Bakitas, School of Nursing, Department of Medicine, The University of Alabama at Birmingham, NB 2M019C, 1720 2nd Avenue South, Birmingham, Alabama 35294-1210. E-mail: mbakitas@uab.edu.
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

Few decision aids are available for patients with a serious illness who face many treatment and end-of-life decisions. We evaluated the Looking Ahead: Choices for Medical Care When You're Seriously Ill® patient decision aid (PtDA), one component of an early palliative care clinical trial.

Method:

Our participants included individuals with advanced cancer and their caregivers who had participated in the ENABLE (Educate, Nurture, Advise, Before Life Ends) early palliative care telehealth randomized controlled trial (RCT) conducted in a National Cancer Institute-designated cancer center, a U.S. Department of Veterans Affairs medical center, and affiliated outreach clinics in rural New England. ENABLE included six weekly patient and three weekly family caregiver structured sessions. Participants watched the Looking Ahead PtDA prior to session 3, which covered content on decision making and advance care planning. Nurse coaches employed semistructured interviews to obtain feedback from consecutive patient and caregiver participants approximately one week after viewing the Looking Ahead PtDA program (booklet and DVD).

Results:

Between April 1, 2011, and October 31, 2012, 57 patients (mean age = 64), 42% of whom had lung and 23% gastrointestinal cancer, and 20 caregivers (mean age = 59), 80% of whom were spouses, completed the PtDA evaluation. Participants reported a high degree of satisfaction with the PtDA format, as well as with its length and clarity. They found the format of using patient interviews “validating.” The key themes were: (1) “the earlier the better” to view the PtDA; (2) feeling empowered, aware of different options, and an urgency to participate in advance care planning.

Significance of results:

The Looking Ahead PtDA was well received and helped patients with a serious illness realize the importance of prospective decision making in guiding their treatment pathways. We found that this PtDA can help seriously ill patients prior to the end of life to understand and discuss future healthcare decision making. However, systems to routinely provide PtDAs to seriously ill patients are yet not well developed.

Keywords

Decision aidPalliative careCancer
Type
Original Articles
Information
Palliative & Supportive Care , Volume 15 , Issue 1 , February 2017 , pp. 44 - 56
Copyright
Copyright © Cambridge University Press 2016 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Footnotes

*

At the time of the study, all authors were affiliated with the Department of Medicine, Section of Palliative Medicine, Dartmouth–Hitchcock Medical Center, Lebanon, New Hampshire.

References

REFERENCES

Bakitas, M., Ahles, T.A., Skalla, K., et al. (2008). Proxy perspectives regarding end-of-life care for persons with cancer. Cancer, 112(8), 1854–1861.Google Scholar
Bakitas, M., Lyons, K., Hegel, M., et al. (2009 a). Project ENABLE II randomized controlled trial to improve palliative care for rural patients with advanced cancer: Baseline findings, methodological challenges, and solutions. Palliative & Supportive Care, 7, 75–86.Google Scholar
Bakitas, M., Lyons, K., Hegel, M., et al. (2009 b). Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: The Project ENABLE II randomized controlled trial. The Journal of the American Medical Association, 302(7), 741–749.CrossRefGoogle Scholar
Bakitas, M., Kryworuchko, J., Matlock, D.D., et al. (2011). Palliative medicine and decision science: The critical need for a shared agenda to foster informed patient choice in serious illness. Journal of Palliative Medicine, 14(10), 1109–1116. Epub ahead of print Sep 6.CrossRefGoogle ScholarPubMed
Bakitas, M., Tosteson, T.D., Li, Z., et al. (2015). Early versus delayed initiation of concurrent palliative oncology care: Patient outcomes in the ENABLE III randomized controlled trial. Journal of Clinical Oncology, 33(13), 1438–1445. Epub ahead of print Mar 23. Available from http://jco.ascopubs.org/content/early/2015/03/23/JCO.2014.58.6362.abstract.CrossRefGoogle ScholarPubMed
Barry, M.J., Fowler, F.J., Mulley, A.G., et al. (1995). Patient reactions to a program designed to facilitate patient participation in treatment decisions for benign prostatic hyperplasia. Medical Care, 33(8), 771–782.Google Scholar
Butler, M., Ratner, E., McCreedy, E., et al. (2014). Decision aids for advance care planning: An overview of the state of the science. Annals of Internal Medicine, 161(6), 408–418.Google Scholar
Creswell, J.W. & Plano Clark, V.L. (eds.) (2007). Designing and conducting mixed-methods research. Thousand Oaks, CA: Sage.Google Scholar
Dionne-Odom, J.N., Kono, A., Frost, J., et al. (2014). Translating and testing the ENABLE: CHF–PC concurrent palliative care model for older adults with heart failure and their family caregivers. Journal of Palliative Medicine, 17(9), 995–1004. Epub ahead of print Jul 29.Google Scholar
Dionne-Odom, J.N., Azuero, A., Lyons, K.D., et al. (2015). Benefits of early versus delayed palliative care to informal family caregivers of patients with advanced cancer: Outcomes from the ENABLE III randomized controlled trial. Journal of Clinical Oncology, 33(13), 1446–1452. Epub ahead of print Mar 23.CrossRefGoogle ScholarPubMed
Elwyn, G., O'Connor, A.M., Bennett, C., et al. (2009). Assessing the quality of decision support technologies using the International Patient Decision Aid Standards instrument (IPDASi). PLoS One, 4(3), 34705. doi: 10.1371/journal.pone.0004705. Epub ahead of print Mar 4.Google Scholar
Fossey, E., Harvey, C., McDermott, F., et al. (2002). Understanding and evaluating qualitative research. The Australian and New Zealand Journal of Psychiatry, 36, 717–732.Google Scholar
Glaser, B.G. & Strauss, A.L. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago: Aldine.Google Scholar
Graneheim, U.H. & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24(2), 105–112.Google Scholar
Hanson, L.C. & Winzelberg, G. (2013). Research priorities for geriatric palliative care: Goals, values, and preferences. Journal of Palliative Medicine, 16(10), 1175–1179. Epub ahead of print Sep 5.Google Scholar
Lenert, L.A., Ziegler, J., Lee, T., et al. (2000). The risks of multimedia methods: Effects of actor's race and gender on preferences for health states. Journal of the American Medical Informatics Association, 7(2), 177–185.Google Scholar
Matlock, D.D., Keech, T.A., McKenzie, M.B., et al. (2011). Feasibility and acceptability of a decision aid designed for people facing advanced or terminal illness: A pilot randomized trial. Health Expectations, 17(1), 49–59. Epub ahead of print Oct 28.Google Scholar
Sandelowski, M. (2000). Combining qualitative and quantitative sampling, data collection, and analysis techniques in mixed-method studies. Research in Nursing & Health, 23, 246–255.Google Scholar
Smith, T.J., Temin, S., Alesi, E.R., et al. (2012). American Society of Clinical Oncology provisional clinical opinion: The integration of palliative care into standard oncology care. Journal of Clinical Oncology, 30(8), 880–887. Epub ahead of print Feb 6.CrossRefGoogle Scholar
Stacey, D., Legare, F., Col, N.F., et al. (2011). Decision aids for people facing health treatment or screening decisions. The Cochrane Database of Systematic Reviews, Oct 5(10), CD001431. doi: 10.1002/14651858.CD001431.pub3.CrossRefGoogle ScholarPubMed
Stacey, D., Kryworuchko, J., Belkora, J., et al. (2013). Coaching and guidance with patient decision aids: A review of theoretical and empirical evidence. BMC Medical Informatics and Decision Making, 13(Suppl. 2), S11.Google Scholar
Tashakkori, A. & Teddlie, C. (eds.) (1998). Mixed methodology: Combining qualitative and quantitative approaches. Thousand Oaks, CA: Sage.Google Scholar
Temel, J.S., Greer, J.A., Muzikansky, A., et al. (2010). Early palliative care for patients with metastatic non-small-cell lung cancer. The New England Journal of Medicine, 363(8), 733–742.Google Scholar
Volandes, A.E., Paasche-Orlow, M.K., Mitchell, S.L., et al. (2013). Randomized controlled trial of a video decision support tool for cardiopulmonary resuscitation decision making in advanced cancer. Journal of Clinical Oncology, 31(3), 380–386. Epub ahead of print Dec 10, 2012.CrossRefGoogle ScholarPubMed
Von Roenn, J.H., Voltz, R. & Serrie, A. (2013). Barriers and approaches to the successful integration of palliative care and oncology practice. Journal of the National Comprehensive Cancer Network, 11(Suppl. 1), S11–S16.Google Scholar
Wagner, E.H., Austin, B.T., Davis, C., et al. (2001). Improving chronic illness care: Translating evidence into action. Health Affairs, 20(6), 64–78.Google Scholar
Wagner, E., Bennett, S., Austin, B., et al. (2005). Finding common ground: Patient-centeredness and evidence-based chronic illness care. Journal of Alternative and Complementary Medicine, 11(Suppl. 1), S7–S15.CrossRefGoogle ScholarPubMed
Waljee, J.F., Rogers, M.A. & Alderman, A.K. (2007). Decision aids and breast cancer: Do they influence choice for surgery and knowledge of treatment options? Journal of Clinical Oncology, 25(9), 1067–1073.Google Scholar
Wasson, J., Splaine, M., Bazos, D., et al. (1998). Working inside, outside, and side by side to improve the quality of healthcare. The Joint Commission Journal on Quality Improvement, 24, 513–517.CrossRefGoogle Scholar