Patient, Family Member and Physician Perspectives and Experiences with AML Treatment Decision-Making.
AML
Acute myeloid leukemia
Decision-making
Qualitative interviews
Treatment
Journal
Oncology and therapy
ISSN: 2366-1089
Titre abrégé: Oncol Ther
Pays: New Zealand
ID NLM: 101677510
Informations de publication
Date de publication:
Dec 2022
Dec 2022
Historique:
received:
12
04
2022
accepted:
23
05
2022
pubmed:
14
6
2022
medline:
14
6
2022
entrez:
13
6
2022
Statut:
ppublish
Résumé
Treatment decisions in older adults with acute myeloid leukemia (AML) are challenging, particularly for those who are not candidates for intensive chemotherapy (IC), and the trade-offs patients, their families and physicians consider when choosing a treatment option are not well understood. This qualitative research explored the value of extending survival and the treatment decision-making process from a multi-stakeholder perspective. Overall, 28 patients with AML (≥ 65 years old, unsuitable for IC), 25 of their relatives and 10 independent physicians from the US, UK and Canada took part in one-on-one, 60-minute qualitative interviews. Across all stakeholders, improved health-related quality of life (HRQoL), extended survival and relief of AML symptoms were recognized as most important in AML treatment decision-making. However, extending survival in 'good health' was more important than extending survival alone, particularly because of the extra time it gives patients and their relatives together, and allows patients to achieve important goals. Patients' limited understanding of available treatment options, paired with incorrect perceptions of treatment side effects, impacted their involvement in the treatment decision-making process. Patients and physicians perceived physicians to have the most influence in the decision-making process despite their priorities not always aligning. These findings illustrate the importance of having structured discussions which explicitly assess patients' goals and their understanding and expectations of treatments and also the need for patient friendly resources about the lived experience of AML and available treatment options. These measures will help to ensure that patients are fully involved in the shared decision-making process.
Identifiants
pubmed: 35695986
doi: 10.1007/s40487-022-00200-9
pii: 10.1007/s40487-022-00200-9
pmc: PMC9189260
doi:
Types de publication
Journal Article
Langues
eng
Pagination
421-440Informations de copyright
© 2022. The Author(s).
Références
Howlader N et al. SEER cancer statistics review, 1975–2018, National Cancer Institute. 2021.
National Cancer Institute. SEER cancer stat fats: acute myeloid leukemia. Bethesda. 2021.
El-Jawahri A, et al. Perceptions of prognosis and treatment risk in older patients with acute myeloid leukemia. Am Soc Hematol. 2017;2017:5.
Boucher NA, Johnson KS, LeBlanc TW. Acute leukemia patients’ needs: qualitative findings and opportunities for early palliative care, (in English). J Pain Symptom Manage. 2017;55(2):433–9.
doi: 10.1016/j.jpainsymman.2017.09.014
pubmed: 28935132
LeBlanc TW, et al. Patient experiences of acute myeloid leukemia: a qualitative study about diagnosis, illness understanding, and treatment decision-making (in English). Psychooncology. 2017;26(12):2063–8.
doi: 10.1002/pon.4309
pubmed: 27862591
Kranzler EC, et al. Treatment decision-making and decisional support experiences among acute myeloid leukemia survivors. Blood. 2020;136:20.
doi: 10.1182/blood-2020-136747
Farber SJ, Egnew TR, Herman-Bertsch JL, Taylor TR, Guldin GE. Issues in end-of-life care: patient, caregiver, and clinician perceptions. J Palliat Med. 2003;6(1):19–31.
doi: 10.1089/10966210360510082
pubmed: 12710572
Vedel I, Ghadi V, Lapointe L, Routelous C, Aegerter P, Guirimand F. Patients’, family caregivers’, and professionals’ perspectives on quality of palliative care: a qualitative study. Palliat Med. 2014;28(9):1128–38.
doi: 10.1177/0269216314532154
pubmed: 24821709
LeBlanc TW, Erba HP. Shifting paradigms in the treatment of older adults with AML. In: Seminars in hematology, Elsevier. 2019.
Crawford R, et al. Patient-centered insights on treatment decision making and living with acute myeloid leukemia and other hematologic cancers. Patient-Patient-Centered Outcomes Res. 2019;2019:1–20.
Latagliata R, et al. Acute myelogenous leukemia in elderly patients not eligible for intensive chemotherapy: the dark side of the moon. Ann Oncol. 2005;17(2):281–5.
doi: 10.1093/annonc/mdj112
pubmed: 16373393
Bories P, et al. Intensive chemotherapy, azacitidine, or supportive care in older acute myeloid leukemia patients: an analysis from a regional healthcare network. Am J Hematol. 2014;89(12):E244–52.
doi: 10.1002/ajh.23848
pubmed: 25195872
Burnett A, Wetzler M, Lowenberg B. Therapeutic advances in acute myeloid leukemia. J Clin Oncol. 2011;29(5):487–94.
doi: 10.1200/JCO.2010.30.1820
pubmed: 21220605
Korol EE, Wang S, Johnston K, Ravandi-Kashani F, Levis M, van Nooten F. Health-related quality of life of patients with acute myeloid leukemia: a systematic literature review. Oncol Therapy. 2017;5(1):1–16.
doi: 10.1007/s40487-016-0039-6
Richardson DR, Seo J, Smith BD, Estey EH, O’Donoghue B, Bridges JF. Quantifying patient preferences for treatment outcomes in AML: a discrete-choice experiment. Blood. 2018;132:718.
doi: 10.1182/blood-2018-99-113071
Bell JA et al. Patient perspectives on symptom experience and impact on health-related quality of life in higher-risk myelodysplastic syndromes, chronic myelomonocytic leukemia and low-blast acute myeloid leukemia, (in English), Blood. In: Conference: 59th annual meeting of the American Society of Hematology, ASH, Conference Abstract vol 130, no. Supplement 1; 2017.
Finn L, Dalovisio A, Foran J. Older patients with acute myeloid leukemia: treatment challenges and future directions. Ochsner J. 2017;17(4):398–404.
pubmed: 29230125
pmcid: 5718453
Yogaparan T, Panju A, Minden M, Brandwein J, Mohamedali H, Alibhai S. Information needs of adult patients 50 or older with newly diagnosed acute myeloid leukemia. Leuk Res. 2009;33(9):1288–90.
doi: 10.1016/j.leukres.2008.12.008
pubmed: 19167065
Amadori S, et al. Gemtuzumab ozogamicin versus best supportive care in older patients with newly diagnosed acute myeloid leukemia unsuitable for intensive chemotherapy: results of the randomized phase III EORTC-GIMEMA AML-19 trial. J Clin Oncol. 2016;34:972–9.
doi: 10.1200/JCO.2015.64.0060
pubmed: 26811524
Arber DA, et al. The 2016 revision to the World Health Organization classification of myeloid neoplasms and acute leukemia. Blood J Am Soc Hematol. 2016;127(20):2391–405.
Ferrara F, et al. Consensus-based definition of unfitness to intensive and non-intensive chemotherapy in acute myeloid leukemia: a project of SIE, SIES and GITMO group on a new tool for therapy decision making. Leukemia. 2013;27(5):997–9.
doi: 10.1038/leu.2012.303
pubmed: 23653072
Yang K, Banamah A. Quota sampling as an alternative to probability sampling? An experimental study. Sociol Res Online. 2014;19(1):56–66.
doi: 10.5153/sro.3199
Cheng KK, Clark AM. Qualitative methods and patient-reported outcomes: measures development and adaptation. In: SAGE Publications Sage CA, Los Angeles. 2017.
Brédart A, Marrel A, Abetz-Webb L, Lasch K, Acquadro C. Interviewing to develop Patient-Reported Outcome (PRO) measures for clinical research: eliciting patients’ experience. Health Qual Life Outcomes. 2014;12(1):15.
doi: 10.1186/1477-7525-12-15
pubmed: 24499454
pmcid: 3933509
Guest G, Bunce A, Johnson L. How many interviews are enough? An experiment with data saturation and variability. Field Methods. 2006;18(1):59–82.
doi: 10.1177/1525822X05279903
Glaser B, Strauss A. The constant comparative methods of qualitative analysis. In: Glaser BG, Strauss AL, editors. The discovery of grounded theory: strategries for qualitative research. New York: Aldine de Gruyter; 2010. p. 101–16.
Atlas. ti software version 8 (ATLAS.ti Scientific Development GmbH, Berlin, Germany), ed. 2018.
Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277–88. https://doi.org/10.1177/1049732305276687 .
doi: 10.1177/1049732305276687
pubmed: 16204405
Joffe H, Yardley L. Content and thematic analysis. In: Marks DF, Yardley L, editors. Research methods for clinical and health psychology. London: Sage Publications; 2004. p. 56–68.
Team RC. R: a language and environment for statistical computing. R Foundation for Statistical Computing. 2020. https://www.r-project.org/ .
Verzani J. Getting started with RStudio. London: O’Reilly Media Inc; 2011.
Sandelowski M. Real qualitative researchers do not count: the use of numbers in qualitative research. Res Nurs Health. 2001;24(3):230–40.
doi: 10.1002/nur.1025
pubmed: 11526621
Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–57.
doi: 10.1093/intqhc/mzm042
pubmed: 17872937
Pinquart M, Fröhlich C, Silbereisen RK. Testing models of change in life goals after a cancer diagnosis. J Loss Trauma. 2008;13(4):330–51.
doi: 10.1080/15325020701742052
Thompson SC, Pitts J. Factors relating to a person’s ability to find meaning after a diagnosis of cancer. J Psychosoc Oncol. 1993;11(3):1–21.
doi: 10.1300/J077V11N03_01
Deckert AL, et al. The importance of meaningful activity in people living with acute myeloid leukemia (in English). Leuk Res. 2018;67:86–91.
doi: 10.1016/j.leukres.2018.02.009
pubmed: 29482172
El-Jawahri AR, et al. Health care utilization and end-of-life care for older patients with acute myeloid leukemia. Cancer. 2015;121(16):2840–8.
doi: 10.1002/cncr.29430
pubmed: 25926135
LeBlanc TW, Abernethy AP, Casarett DJ. What is different about patients with hematologic malignancies? A retrospective cohort study of cancer patients referred to a hospice research network. J Pain Symptom Manage. 2015;49(3):505–12.
doi: 10.1016/j.jpainsymman.2014.07.003
pubmed: 25116911
Richardson DR, et al. Prioritizing the worries of AML patients: quantifying patient experience using best–worst scaling. Psychooncology. 2021;30:7.
doi: 10.1002/pon.5652
Boucher NA, Johnson KS, LeBlanc TW. Acute leukemia patients’ needs: qualitative findings and opportunities for early palliative care. J Pain Symptom Manage. 2018;55(2):433–9.
doi: 10.1016/j.jpainsymman.2017.09.014
pubmed: 28935132
Ghodraty-Jabloo V, Alibhai SMH, Breunis H, Puts MTE. Keep your mind off negative things: coping with long-term effects of acute myeloid leukemia (AML), (in English). Support Care Cancer. 2016;24(5):2035–45.
doi: 10.1007/s00520-015-3002-4
pubmed: 26542270
Mahase E. Nearly half of cancer patients don’t feel involved in treatment decisions, survey finds. London: British Medical Journal Publishing Group; 2019.
doi: 10.1136/bmj.l4877
Medeiros BC, Satram-Hoang S, Hurst D, Hoang KQ, Momin F, Reyes C. Big data analysis of treatment patterns and outcomes among elderly acute myeloid leukemia patients in the United States. Ann Hematol. 2015;94(7):1127–38.
doi: 10.1007/s00277-015-2351-x
pubmed: 25791241
pmcid: 4432101