A novel decision aid for acute myeloid leukemia: a feasibility and preliminary efficacy trial
Tóm tắt
Acute myeloid leukemia (AML) is a hematologic malignancy characterized by a poor prognosis but also a paradoxical possibility of cure. This renders decision-making complex and imminent. Unfortunately, many patients with AML misestimate their prognosis and treatment risk. While decision aids can improve illness understanding and reduce decisional conflict, there are no validated decision aids for AML. We developed and tested a novel AML decision aid (NCT03442452). Patients (n = 20) were recruited at Duke University from May 2018 to February 2019. Participants completed assessments of AML knowledge and decisional conflict, before and after using the electronic decision aid. The primary endpoint was feasibility (endpoint met if > 80% of study participants completed all study components). Secondary analyses of efficacy were conducted using paired t tests for dependent pre-/post-samples. The primary endpoint of feasibility was met (100% of participants completed all study components). Secondary analyses showed improved knowledge and reduced decisional conflict after using the decision aid. Knowledge scores improved from a mean of 11.8 (out of 18) correct items at baseline to 15.1 correct items after using the decision aid (mean difference 3.35; p < 0.0001). Decisional conflict scores reduced significantly from baseline to post-test as well (mean difference − 6.5; p = 0.02). These findings suggest that our AML decision aid is a useful tool to improve the patient experience and promote shared decision-making in AML. A randomized efficacy trial is planned.
Tài liệu tham khảo
Society AC (2018) Key Statistics for Acute Myeloid Leukemia.
Epstein AS, Goldberg GR, Meier DE (2012) Palliative care and hematologic oncology: the promise of collaboration. Blood Rev 26(6):233–239. https://doi.org/10.1016/j.blre.2012.07.001
El-Jawahri A, Nelson-Lowe M, VanDusen H, Traeger L, Abel GA, Greer JA, Fathi A, Steensma DP, LeBlanc TW, Li Z, DeAngelo D, Wadleigh M, Hobbs G, Foster J, Brunner A, Amrein P, Stone RM, Temel JS (2019) Patient-clinician discordance in perceptions of treatment risks and benefits in older patients with acute myeloid leukemia. Oncologist 24(2):247–254. https://doi.org/10.1634/theoncologist.2018-0317
Sekeres MA, Stone RM, Zahrieh D, Neuberg D, Morrison V, De Angelo DJ, Galinsky I, Lee SJ (2004) Decision-making and quality of life in older adults with acute myeloid leukemia or advanced myelodysplastic syndrome. Leukemia 18(4):809–816. https://doi.org/10.1038/sj.leu.2403289
Panju AH, Danesh A, Minden MD, Kelvin DJ, Alibhai SM (2009) Associations between quality of life, fatigue, and cytokine levels in patients aged 50+ with acute myeloid leukemia. Support Care Cancer 17(5):539–546. https://doi.org/10.1007/s00520-008-0512-3
LeBlanc TW, Fish LJ, Bloom CT, El-Jawahri A, Davis DM, Locke SC, Steinhauser KE, Pollak KI (2017) Patient experiences of acute myeloid leukemia: a qualitative study about diagnosis, illness understanding, and treatment decision-making. Psychooncology 26(12):2063–2068. https://doi.org/10.1002/pon.4309
Nissim R, Zimmermann C, Minden M, Rydall A, Yuen D, Mischitelle A, Gagliese L, Schimmer A, Rodin G (2013) Abducted by the illness: a qualitative study of traumatic stress in individuals with acute leukemia. Leuk Res 37(5):496–502. https://doi.org/10.1016/j.leukres.2012.12.007
Rodin G, Deckert A, Tong E, Le LW, Rydall A, Schimmer A, Marmar CR, Lo C, Zimmermann C (2018) Traumatic stress in patients with acute leukemia: a prospective cohort study. Psychooncology 27(2):515–523. https://doi.org/10.1002/pon.4488
Boucher NA, Johnson KS, LeBlanc TW (2018) Acute leukemia patients' needs: qualitative findings and opportunities for early palliative care. J Pain Symptom Manag 55(2):433–439. https://doi.org/10.1016/j.jpainsymman.2017.09.014
Stacey D, Legare F, Lewis K, Barry MJ, Bennett CL, Eden KB, Holmes-Rovner M, Llewellyn-Thomas H, Lyddiatt A, Thomson R, Trevena L (2017) Decision aids for people facing health treatment or screening decisions. Cochrane Database of Syst Rev 4:Cd001431. https://doi.org/10.1002/14651858.CD001431.pub5
LeBlanc TW (2019) Shared decision-making in acute myeloid leukemia. Semin Oncol Nurs 35(6):150958. https://doi.org/10.1016/j.soncn.2019.150958
Elwyn AOCaG (2005) IPDAS 2005: Criteria for judging the quality of patient decision aids. International Patient Decision Aid Standards (IPDAS) Collaboration
Marteau TM, Bekker H (1992) The development of a six-item short-form of the state scale of the Spielberger State-Trait Anxiety Inventory (STAI). Br J Clin Psychol 31(3):301–306. https://doi.org/10.1111/j.2044-8260.1992.tb00997.x
Corsaletti BF, Proença M-DGL, Bisca GKW, Leite JC, Bellinetti LM, Pitta F (2014) Minimal important difference for anxiety and depression surveys after intervention to increase daily physical activity in smokers. Fisioterapia e Pesquisa 21:359–364
O'Connor AM (1995) Validation of a decisional conflict scale. Med Decis Mak 15(1):25–30. https://doi.org/10.1177/0272989x9501500105
Fagerlin A, Zikmund-Fisher BJ, Ubel PA, Jankovic A, Derry HA, Smith DM (2007) Measuring numeracy without a math test: development of the Subjective Numeracy Scale. Med Decis Mak 27(5):672–680. https://doi.org/10.1177/0272989x07304449
Zikmund-Fisher BJ, Smith DM, Ubel PA, Fagerlin A (2007) Validation of the Subjective Numeracy Scale: effects of low numeracy on comprehension of risk communications and utility elicitations. Med Decis Mak 27(5):663–671. https://doi.org/10.1177/0272989x07303824
Dumenci L, Matsuyama RK, Kuhn L, Perera RA, Siminoff LA (2013) On the validity of the rapid estimate of adult literacy in medicine (REALM) scale as a measure of health literacy. Commun Methods Meas 7(2):134–143. https://doi.org/10.1080/19312458.2013.789839
Loas G, Dardennes R, Dhee-Perot P, Leclerc V, Fremaux D (1994) Operationalization of the “locus of control” concept: translation and first validation study of the Levenson control scale (IPC: the internal powerful others and chance scale). Ann Med Psychol (Paris) 152(7):466–469
Dickson AC, Dodd MJ, Carrieri V, Levenson H (1985) Comparison of a cancer-specific locus of control and the multidimensional health locus of control scales in chemotherapy patients. Oncol Nurs Forum 12(3):49–54
Shea JA, Beers BB, McDonald VJ, Quistberg DA, Ravenell KL, Asch DA (2004) Assessing health literacy in African American and Caucasian adults: disparities in rapid estimate of adult literacy in medicine (REALM) scores. Fam Med 36(8):575–581
El-Jawahri A, Traeger L, Park ER, Greer JA, Pirl WF, Lennes IT, Jackson VA, Gallagher ER, Temel JS (2014) Associations among prognostic understanding, quality of life, and mood in patients with advanced cancer. Cancer 120(2):278–285. https://doi.org/10.1002/cncr.28369