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Patient-Reported Outcome Measures in Patients with Thrombotic Thrombocytopenic Purpura: A Systematic Review of the Literature.

Publication ,  Journal Article
Soares Ferreira Junior, A; Pinheiro Maux Lessa, M; Kaplan, S; Coles, TM; Terrell, DR; Onwuemene, OA
Published in: J Clin Med
August 7, 2023

Health-related quality of life (HRQoL) impacts of thrombotic thrombocytopenic purpura (TTP) have been captured in clinical studies using patient-reported outcome (PRO) measures (PROMs) that are validated for other diseases. However, the validity evidence to support the use of existing PROMs in patients with TTP is unknown. In a systematic review of the literature, including studies of adults and children with TTP, we assessed the validity evidence for use of PROMs in clinical research and clinical practice, characterized HRQoL, described the integration of PROMs in clinical practice and evaluated PRO scores for patients with TTP compared with reference populations. From an initial 4518 studies, we identified 14 studies using 16 PROMs to assess general HRQoL domains in patients in remission. No identified studies assessed the validity of PROMs for the context of use of TTP and no studies described PROM integration into TTP clinical practice or evaluated PROMs that were specific for patients with TTP. Moreover, PRO scores were worse in patients with TTP compared with reference populations and other chronic conditions. We conclude that, in patients with TTP, PROMs pick up on important patient experiences not captured by clinical outcomes at present. There is, therefore, a need for studies that assess the validity of existing PROMs in patients with TTP to determine if TTP-specific PROMs specific to patients with TTP should be developed.

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Published In

J Clin Med

DOI

ISSN

2077-0383

Publication Date

August 7, 2023

Volume

12

Issue

15

Location

Switzerland

Related Subject Headings

  • 32 Biomedical and clinical sciences
  • 1103 Clinical Sciences
 

Citation

APA
Chicago
ICMJE
MLA
NLM
Soares Ferreira Junior, A., Pinheiro Maux Lessa, M., Kaplan, S., Coles, T. M., Terrell, D. R., & Onwuemene, O. A. (2023). Patient-Reported Outcome Measures in Patients with Thrombotic Thrombocytopenic Purpura: A Systematic Review of the Literature. J Clin Med, 12(15). https://doi.org/10.3390/jcm12155155
Soares Ferreira Junior, Alexandre, Morgana Pinheiro Maux Lessa, Samantha Kaplan, Theresa M. Coles, Deirdra R. Terrell, and Oluwatoyosi A. Onwuemene. “Patient-Reported Outcome Measures in Patients with Thrombotic Thrombocytopenic Purpura: A Systematic Review of the Literature.J Clin Med 12, no. 15 (August 7, 2023). https://doi.org/10.3390/jcm12155155.
Soares Ferreira Junior A, Pinheiro Maux Lessa M, Kaplan S, Coles TM, Terrell DR, Onwuemene OA. Patient-Reported Outcome Measures in Patients with Thrombotic Thrombocytopenic Purpura: A Systematic Review of the Literature. J Clin Med. 2023 Aug 7;12(15).
Soares Ferreira Junior, Alexandre, et al. “Patient-Reported Outcome Measures in Patients with Thrombotic Thrombocytopenic Purpura: A Systematic Review of the Literature.J Clin Med, vol. 12, no. 15, Aug. 2023. Pubmed, doi:10.3390/jcm12155155.
Soares Ferreira Junior A, Pinheiro Maux Lessa M, Kaplan S, Coles TM, Terrell DR, Onwuemene OA. Patient-Reported Outcome Measures in Patients with Thrombotic Thrombocytopenic Purpura: A Systematic Review of the Literature. J Clin Med. 2023 Aug 7;12(15).

Published In

J Clin Med

DOI

ISSN

2077-0383

Publication Date

August 7, 2023

Volume

12

Issue

15

Location

Switzerland

Related Subject Headings

  • 32 Biomedical and clinical sciences
  • 1103 Clinical Sciences