Development of the Treatment Preference in Myelodysplasia Questionnaire for Clinicians, Carers, and Patients

Overview

Journal EJHaem

Specialty Hematology

Date 2024 Jun 19

PMID 38895084

Authors

Robert Morlock

Chun Fong

Francesco Castaldi

Taliesha Paine

Donna Collett

Anoop Enjeti

Affiliations

Soon will be listed here.

Abstract

This study reports the development activities for the Treatment Preference Myelodysplasia Questionnaires (TPMQ) for clinicians (mTPMQ), carers (cTPMQ), and patients (pTPMQ). These tools are intended to evaluate treatment preferences for patients with myelodysplastic syndromes (MDS). This was a non-interventional, cross-sectional qualitative interview study consisting of interviews with clinicians, patients, and those caring for patients with MDS. All participants were located in Australia and data were collected from qualitative mixed-method interviews composed of concept elicitation and cognitive debriefing related to initial drafts of the questionnaires. Fifteen individuals participated in interviews (five from each group). Based on the concept elicitation portion of interviews, concepts of importance were classified and reasons for treatment preference were documented. From cognitive debriefing, the questionnaires were generally deemed to be clear and easy to understand. Participant input from both concept elicitation and cognitive debriefing portions was used to revise initial drafts of the questionnaires. The mTPMQ, cTPMQ, and pTPMQ were developed with direct input from clinicians, patients, and caregivers to assess the key concepts of interest related to the preference for the treatment of MDS and are ready to be used and evaluated further in clinical trials.

References

Zeidan A, Salimi T, Epstein R . Real-world use and outcomes of hypomethylating agent therapy in higher-risk myelodysplastic syndromes: why are we not achieving the promise of clinical trials?. Future Oncol. 2021; 17(36):5163-5175. DOI: 10.2217/fon-2021-0936. View

Kantarjian H, Issa J, Rosenfeld C, Bennett J, Albitar M, DiPersio J . Decitabine improves patient outcomes in myelodysplastic syndromes: results of a phase III randomized study. Cancer. 2006; 106(8):1794-803. DOI: 10.1002/cncr.21792. View

Bell J, Galaznik A, Huelin R, Stokes M, Guo Y, Fram R . Systematic Literature Review of Treatment Options and Clinical Outcomes for Patients With Higher-Risk Myelodysplastic Syndromes and Chronic Myelomonocytic Leukemia. Clin Lymphoma Myeloma Leuk. 2018; 18(4):e157-e166. DOI: 10.1016/j.clml.2018.02.001. View

Sekeres M . Epidemiology, natural history, and practice patterns of patients with myelodysplastic syndromes in 2010. J Natl Compr Canc Netw. 2011; 9(1):57-63. DOI: 10.6004/jnccn.2011.0006. View

Shapiro R, Lazo-Langner A . Systematic review of azacitidine regimens in myelodysplastic syndrome and acute myeloid leukemia. BMC Hematol. 2018; 18:3. PMC: 5793426. DOI: 10.1186/s12878-017-0094-8. View

Cogle C . Incidence and Burden of the Myelodysplastic Syndromes. Curr Hematol Malig Rep. 2015; 10(3):272-81. PMC: 4553145. DOI: 10.1007/s11899-015-0269-y. View

Cheng W, Satija A, Cheung H, Hill K, Wert T, Laliberte F . Persistence to hypomethylating agents and clinical and economic outcomes among patients with myelodysplastic syndromes. Hematology. 2021; 26(1):261-270. DOI: 10.1080/16078454.2021.1889161. View

Gore S . New ways to use DNA methyltransferase inhibitors for the treatment of myelodysplastic syndrome. Hematology Am Soc Hematol Educ Program. 2011; 2011:550-5. PMC: 3593590. DOI: 10.1182/asheducation-2011.1.550. View

Fenaux P, Mufti G, Hellstrom-Lindberg E, Santini V, Finelli C, Giagounidis A . Efficacy of azacitidine compared with that of conventional care regimens in the treatment of higher-risk myelodysplastic syndromes: a randomised, open-label, phase III study. Lancet Oncol. 2009; 10(3):223-32. PMC: 4086808. DOI: 10.1016/S1470-2045(09)70003-8. View

10.

Zeidan A, Jayade S, Schmier J, Botteman M, Hassan A, Ruiters D . Injectable Hypomethylating Agents for Management of Myelodysplastic Syndromes: Patients' Perspectives on Treatment. Clin Lymphoma Myeloma Leuk. 2021; 22(3):e185-e198. DOI: 10.1016/j.clml.2021.09.009. View

11.

Kim D, Lee H, Moon J, Sohn S, Kim H, Cheong J . Can we consider discontinuation of hypomethylating agents in patients with myelodysplastic syndrome : a retrospective study from The Korean Society of Hematology AML/MDS Working Party. Oncotarget. 2017; 8(45):79414-79424. PMC: 5668053. DOI: 10.18632/oncotarget.18258. View

12.

Delmas A, Batchelder L, Arora I, Bayet S, Bruhn D, Eberhardt A . Exploring preferences of different modes of administration of hypomethylating agent treatments among patients with acute myeloid leukemia. Front Oncol. 2023; 13:1160966. PMC: 10202170. DOI: 10.3389/fonc.2023.1160966. View

13.

Cogle C, Kurtin S, Bentley T, Broder M, Chang E, Megaffin S . The Incidence and Health Care Resource Burden of the Myelodysplastic Syndromes in Patients in Whom First-Line Hypomethylating Agents Fail. Oncologist. 2017; 22(4):379-385. PMC: 5388372. DOI: 10.1634/theoncologist.2016-0211. View

14.

Zeidan A, Tsai J, Karimi M, Schmier J, Jayade S, Zormpas E . Patient Preferences for Benefits, Risks, and Administration Route of Hypomethylating Agents in Myelodysplastic Syndromes. Clin Lymphoma Myeloma Leuk. 2022; 22(9):e853-e866. DOI: 10.1016/j.clml.2022.04.023. View

15.

Corman S, Joshi N, Wert T, Kale H, Hill K, Zeidan A . Under-use of Hypomethylating Agents in Patients With Higher-risk Myelodysplastic Syndrome in the United States: A Large Population-based Analysis. Clin Lymphoma Myeloma Leuk. 2020; 21(2):e206-e211. DOI: 10.1016/j.clml.2020.10.013. View

16.

Uy N, Singh A, Gore S, Prebet T . Hypomethylating agents (HMA) treatment for myelodysplastic syndromes: alternatives in the frontline and relapse settings. Expert Opin Pharmacother. 2017; 18(12):1213-1224. PMC: 6121132. DOI: 10.1080/14656566.2017.1349100. View