PMID- 29731612
OWN - NLM
STAT- PubMed-not-MEDLINE
LR  - 20240324
IS  - 1177-889X (Print)
IS  - 1177-889X (Electronic)
IS  - 1177-889X (Linking)
VI  - 12
DP  - 2018
TI  - Developing and piloting an instrument to prioritize the worries of patients with 
      acute myeloid leukemia.
PG  - 647-655
LID - 10.2147/PPA.S151752 [doi]
AB  - BACKGROUND: Acute myeloid leukemia (AML) is a rapidly progressing blood cancer 
      for which new treatments are needed. We sought to promote patient-focused drug 
      development (PFDD) for AML by developing and piloting an instrument to prioritize 
      the worries of patients with AML. PATIENTS AND METHODS: An innovative 
      community-centered approach was used to engage expert and community stakeholders 
      in the development, pretesting, pilot testing, and dissemination of a novel 
      best-worst scaling instrument. Patient worries were identified through individual 
      interviews (n=15) and group calls. The instrument was developed through rigorous 
      pretesting (n=13) and then piloted among patients and caregivers engaged in this 
      study (n=25). Priorities were assessed using best-worst scores (spanning from +1 
      to -1) representing the relative number of times that items were endorsed as the 
      most and the least worrying. All findings were presented at a PFDD meeting at the 
      US Food and Drug Administration (FDA) that was attended by >80 stakeholders. 
      RESULTS: The final instrument included 13 worries spanning issues such as 
      decision making, treatment delivery, physical impacts, and psychosocial effects. 
      Patients and caregivers most prioritized worries about dying from their disease 
      (best minus worst [BW] score=0.73), long-term side effects (BW=0.28), and time in 
      hospital (BW=0.25). CONCLUSION: Community-centered approaches are valuable in 
      designing and executing PFDD meetings and associated quantitative surveys to 
      document the experience of patients. Expert and community stakeholders welcomed 
      the opportunity to share their experiences with the FDA and strongly endorsed 
      implementing this survey nationally.
FAU - Bridges, John Fp
AU  - Bridges JF
AD  - Department of Health Policy and Management, Johns Hopkins Bloomberg School of 
      Public Health, Baltimore, MD, USA.
FAU - Oakes, Allison H
AU  - Oakes AH
AD  - Department of Health Policy and Management, Johns Hopkins Bloomberg School of 
      Public Health, Baltimore, MD, USA.
FAU - Reinhart, Crystal A
AU  - Reinhart CA
AD  - Center for Prevention Research and Development, University of Illinois at 
      Urbana-Champaign, Champaign, IL, USA.
FAU - Voyard, Ernest
AU  - Voyard E
AD  - The Leukemia & Lymphoma Society, Rye Brook, NY, USA.
FAU - O'Donoghue, Bernadette
AU  - O'Donoghue B
AD  - The Leukemia & Lymphoma Society, Rye Brook, NY, USA.
LA  - eng
GR  - T32 HS000029/HS/AHRQ HHS/United States
PT  - Journal Article
DEP - 20180427
PL  - New Zealand
TA  - Patient Prefer Adherence
JT  - Patient preference and adherence
JID - 101475748
PMC - PMC5927351
OTO - NOTNLM
OT  - acute myeloid leukemia
OT  - best-worst scaling
OT  - community engagement
OT  - patient-focused drug development
OT  - stated-preference
COIS- Disclosure Ernest Voyard and Bernadette O'Donoghue are employees of the LLS. The 
      other authors report no conflicts of interest in this work.
EDAT- 2018/05/08 06:00
MHDA- 2018/05/08 06:01
PMCR- 2018/04/27
CRDT- 2018/05/08 06:00
PHST- 2018/05/08 06:00 [entrez]
PHST- 2018/05/08 06:00 [pubmed]
PHST- 2018/05/08 06:01 [medline]
PHST- 2018/04/27 00:00 [pmc-release]
AID - ppa-12-647 [pii]
AID - 10.2147/PPA.S151752 [doi]
PST - epublish
SO  - Patient Prefer Adherence. 2018 Apr 27;12:647-655. doi: 10.2147/PPA.S151752. 
      eCollection 2018.