Abstract
Context
: Quality measures have been devised for end-of-life care of older adults with cancer,
but are lacking for adolescents and young adults (AYAs).
Objective
: We previously conducted interviews with AYAs, family caregivers, and clinicians
to identify priority domains for high quality care of AYAs with advanced cancer. The
goal of this study was to use a modified Delphi process to form consensus around the
highest priority quality indicators.
Methods
: A modified Delphi process was conducted with 10 AYAs with recurrent or metastatic
cancer, 11 family caregivers, and 29 multidisciplinary clinicians, using small group
web conferences. Participants were asked to rate the importance of each of 41 potential
quality indicators, rank the 10 most important, and engage in discussion to reconcile
differences.
Results
: Of 41 initial indicators, 34 were rated as highly important (rating 7, 8, or 9 on
a 9-point scale) by >70% of participants. The panel was unable to reach consensus
around the 10 most important indicators. Instead, participants recommended retaining
a larger set of indicators to reflect potential for different priorities across the
population, resulting in a final set of 32 indicators. Recommended indicators broadly
encompassed attention to physical symptoms; quality of life; psychosocial and spiritual
care; communication and decision-making; relationships with clinicians; care and treatment;
and independence.
Conclusion
: A patient- and family-centered process for quality indicator development led to
strong endorsement of multiple potential indicators by Delphi participants. Further
validation and refinement will be performed using a survey of bereaved family members.
Key words
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References
- The adolescent and young adult gap in cancer care and outcome.Curr Probl Pediatr Adolesc Health Care. 2005; 35: 182-217
- Cancer Epidemiology in Older Adolescents and Young Adults 15 to 29 Years of Age, Including SEER Incidence and Survival: 1975-2000.National Cancer Institute, NIH, Bethesda, MD2006
- Cancer statistics, 2022.CA: A Cancer Journal for Clinicians. 2022; 72: 7-33
- High Intensity of End-of-Life Care Among Adolescent and Young Adult Cancer Patients in the New York State Medicaid Program.Med Care. 2015; 53: 1018-1026
- End-of-Life Care Intensity Among Adolescent and Young Adult Patients With Cancer in Kaiser Permanente Southern California.JAMA Oncol. 2015; 1: 592-600
- Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers' mental health.J Clin Oncol. 2010; 28: 4457-4464
- Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment.JAMA. 2008; 300: 1665-1673
- Palliative care in adolescents and young adults with cancer.Cancer. 2011; 117: 2323-2328
- Role of palliative care in adolescent and young adult oncology.J Clin Oncol. 2010; 28: 4819-4824
- End-of-life care preferences of pediatric patients with cancer.J Clin Oncol. 2005; 23: 9055-9057
Identifying and addressing the needs of adolescents and young adults with cancer: Workshop summary. Washington, DC 2013.
- Identifying and addressing the needs of adolescents and young adults with cancer: summary of an Institute of Medicine workshop.Oncologist. 2015; 20: 186-195
- Delivering High-Quality Cancer Care : Charting a New Course for a System in Crisis.Institute of Medicine, Washington, DC2013
- Cancer Quality-ASSIST supportive oncology quality indicator set: feasibility, reliability, and validity testing.Cancer. 2010; 116: 3267-3275
- Measuring what matters: top-ranked quality indicators for hospice and palliative care from the american academy of hospice and palliative medicine and hospice and palliative nurses association.J Pain Symptom Manage. 2015; 49: 773-781
Palliative and end-of-life care performance measures. www.qualityforum.org. Accessed June 1, 2015.
- The PEACE project review of clinical instruments for hospice and palliative care.J Palliat Med. 2010; 13: 1253-1260
- Advancing performance measurement in oncology: quality oncology practice initiative participation and quality outcomes.J Oncol Pract. 2011; 7 (31s-35s)
- Quality indicators for palliative and end-of-life care in vulnerable elders.J Am Geriatr Soc. 2007; 55 (S318-326)
National Comprehensive Cancer Network. Practice Guidelines in Oncology. Palliative care. http://www.nccn.org/professionals/physicians_gls/PDP/palliative.pdf. Accessed.
- Aggressiveness of cancer care near the end of life: is it a quality-of-care issue?.J Clin Oncol. 2008; 26: 3860-3866
Goodman D, Morden N, Chang C, Fisher E, Wennberg J. Trends in Cancer Care Near the End of Life: A Dartmouth Atlas of Health Care Brief. September 4, 2013. 2013.
- American society of clinical oncology statement: toward individualized care for patients with advanced cancer.J Clin Oncol. 2011; 29: 755-760
- Influence of Patients' Preferences and Treatment Site on Cancer Patients' End-of-Life Care.under review. 2009;
- Patient, Family, and Clinician Perspectives on End-of-Life Care Quality Domains and Candidate Indicators for Adolescents and Young Adults With Cancer.JAMA Netw Open. 2021; 4 (e2121888)
- The RAND/UCLA Appropriateness Method User's Manual.RAND Corporation, Santa Monica, CA2001
- Research guidelines for the Delphi survey technique.J Adv Nurs. 2000; 32: 1008-1015
- Planning and Reporting Effective Web-Based RAND/UCLA Appropriateness Method Panels: Literature Review and Preliminary Recommendations.J Med Internet Res. 2022; 24 (e33898)
- An Adaptation of the RAND/UCLA Modified Delphi Panel Method in the Time of COVID-19.J Healthc Leadersh. 2022; 14: 63-70
- Delphi methodology in healthcare research: How to decide its appropriateness.World J Methodol. 2021; 11: 116-129
- Factors considered important at the end of life by patients, family, physicians, and other care providers.JAMA. 2000; 284: 2476-2482
- Voicing their choices: Advance care planning with adolescents and young adults with cancer and other serious conditions.Palliative and Supportive Care. 2022; 20: 462-470
- Adolescent and Young Adult Initiated Discussions of Advance Care Planning: Family Member, Friend and Health Care Provider Perspectives.Frontiers in Psychology. 2022; 13
- Quality measures for end-of-life care for children with cancer: A modified Delphi approach.Cancer. 2021; 127: 2571-2578
- Refining Patient-Centered Measures of End-of-Life Care Quality for Children With Cancer.JCO Oncol Pract. 2022; 18 (e372-e382)
Article info
Publication history
Accepted:
March 8,
2023
Publication stage
In Press Journal Pre-ProofFootnotes
Editorial Comment: David Hui, MD, MSc, FAAHPM. Senior Associate Editor.
The investigators identified 32 measures to assess quality of end-of-life care for adolescents and young adults with advanced cancer. Upon further validation, these indicators may be useful for program development, benchmarking and research.
Identification
Copyright
© 2023 Published by Elsevier Inc. on behalf of American Academy of Hospice and Palliative Medicine.
