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Huntington Disease Patient Report of Problems (HD-PROP)
Huntington Disease Patient Report of Problems (HD-PROP)
| Availability |
Please visit this website for more information about the instrument: Huntington Disease Patient Report of Problems
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| Classification |
Exploratory: Huntington's Disease (HD)
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| Short Description of Instrument |
The Huntington Disease Patient Report of Problems (HD-PROP) is a three-item measure that captures a patient's verbatim verbal or text responses about their five most bothersome problems related to HD. In addition to reporting the problems, patients describe how each problem affects their daily functioning and their self-interventions.
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| Comments/Special Instructions |
HD-PROP consists of three questions and captures verbatim accounts from HD patients concerning bothersome problems, functional consequences, and problem severity.
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| Scoring and Psychometric Properties |
Scoring: Data from patient verbatim responses is mined, curated and analyzed with natural language processing software, clinical subject matter expert review, and machine learning technology.
Psychometric Properties: N/A
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| Rationale/Justification |
Strengths: Allows individuals with Huntington Disease to report and rank, in their own words, which symptoms are most bothersome. In the REACH2HD clinical trial, HD-PROP results paralleled the cognitive outcomes of interest (Huntington Study Group Reach2HD Investigators, 2015).
Weaknesses: Access to technology may be a challenge for some patient populations who may lack internet access or devices, e.g., older individuals and rural populations. Self-report can introduce reporting biases and a population that may not be completely representative of HD patients (Anderson et al., 2024).
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| References |
Key Reference:
Anderson KE, Arbatti L, Hosamath A, Feigin A, Goldstein J, Kayson E, Kinsler BL, Falanga L, Denise L, Carlozzi NE, Frank S, Jackson K, Kostyk S, Purks JL, Serbin KP, Kinel S, Beck CA, Shoulson I. What Huntington's Disease Patients Say About Their Illness: An Online Direct-to-Participant Pilot Study. J Huntingtons Dis. 2024;13(2):237-248.
Additional References:
Huntington Study Group Reach2HD Investigators. Safety, tolerability, and efficacy of PBT2 in Huntington's disease: a phase 2, randomised, double-blind, placebo-controlled trial. Lancet Neurol. 2015 Jan;14(1):39-47.
Javidnia M, Arbatti L, Hosamath A, Eberly SW, Oakes D, Shoulson I. Predictive Value of Verbatim Parkinson's Disease Patient-Reported Symptoms of Postural Instability and Falling. J Parkinsons Dis. 2021;11(4):1957-1964.
Marras C, Arbatti L, Hosamath A, Amara A, Anderson KE, Chahine LM, Eberly S, Kinel D, Mantri S, Mathur S, Oakes D, Purks JL, Standaert DG, Tanner CM, Weintraub D, Shoulson I. What Patients Say: Large-Scale Analyses of Replies to the Parkinson's Disease Patient Report of Problems (PD-PROP). J Parkinsons Dis. 2023;13(5):757-767.
Purks JL, Harris M, Anderson KE, Shoulson I. Natural Language Processing (NLP) of verbatim consequence Patient-Reported Outcomes highlight functional ability as important to patients. Neurotherapeutics. 2018 Oct 12;15(4):1192.
Purks JL, Harris M, Anderson KE, Shoulson I. Applying natural language processing (NLP) to verbatim patient-reported outcomes. Poster Presentation, 141st Annual Meeting of the American Neurological Association, Baltimore, MD, Oct 16, 2016. Ann Neurol. 2016 Oct 24;80(S20):69. Retrieved 19Jul2024 from https://alteritytherapeutics.com/wp-content/uploads/2016/10/FINAL-ANA-Abstract-submission-NLP-4-8-16.pdf.
Shoulson I, Arbatti L, Hosamath A, Eberly SW, Oakes D. Longitudinal Cohort Study of Verbatim-Reported Postural Instability Symptoms as Outcomes for Online Parkinson's Disease Trials. J Parkinsons Dis. 2022;12(6):1969-1978.
Document last updated October 2024
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