Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2024 May 28;5(3):535-540.
doi: 10.1002/jha2.930. eCollection 2024 Jun.

Development of the treatment preference in myelodysplasia questionnaire for clinicians, carers, and patients

Affiliations

Development of the treatment preference in myelodysplasia questionnaire for clinicians, carers, and patients

Robert Morlock et al. EJHaem. .

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.

Keywords: hypomethylating agents; myelodysplastic syndromes; questionnaires; treatment preference.

PubMed Disclaimer

Conflict of interest statement

Dr. Morlock reports personal fees from Otsuka during the conduct of the study and personal fees from Novartis, Heron Therapeutics, Replimune, Horizon Therapeutics, Syndax, Arthrosi, and Pfizer outside the submitted work.Dr. Fong reports personal fees from Otsuka Australia Pharmaceutical during the conduct of the study, personal fees from AbbVie, Amgen, Beigene, Novartis, Pfizer, Servier, Bristol‐Myers Squibb, and grants and personal fees from Astellas and Jazz Pharmaceutical outside the submitted work.Dr. Castaldi reports others from Otsuka Australia Pharmaceutical Pty Ltd during the conduct of the study and other fees from Otsuka Australia Pharmaceutical Pty Ltd outside the submitted work.Dr. Paine is an employee of Otsuka Australia Pharmaceutical Pty Ltd.Ms. Collett reports personal fees from Otsuka Australia Pharmaceutical Pty Ltd during the conduct of the study and personal fees from Otsuka Australia Pharmaceutical Pty Ltd outside the submitted work.Dr. Enjeti reports others from Otsuka Australia during the conduct of the study, and personal fees from Otsuka Australia outside the submitted work.

References

    1. Bell JA, Galaznik A, Huelin R, Stokes M, Guo Y, Fram RJ, et al. 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. - PubMed
    1. Cogle CR. Incidence and burden of the myelodysplastic syndromes. Curr Hematol Malig Rep. 2015;10(3):272–281. - PMC - PubMed
    1. Cogle CR, Kurtin SE, Bentley TG, Broder MS, Chang E, Megaffin S, et al. 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 - PubMed
    1. Sekeres MA. Epidemiology, natural history, and practice patterns of patients with myelodysplastic syndromes in 2010. J Natl Compr Canc Netw. 2011;9(1):57–63. - PubMed
    1. Lubeck DP, Danese M, Jennifer D, Miller K, Richhariya A, Garfin PM. Systematic literature review of the global incidence and prevalence of myelodysplastic syndrome and acute myeloid leukemia. Blood. 2016;128(22):5930.