Process / pipelineHealth OutcomesNeurological Movement DisordersPipeline

Parkinson's Disease Questionnaire-39

Also known as: PDQ-39, Parkinson's Disease Questionnaire, PDQ

OriginatorCrispin Jenkinson et al.Year1997Sources3Related methods9

The PDQ-39 is the most widely used patient-reported outcome measure for Parkinson's disease quality of life. Developed by Crispin Jenkinson and colleagues in 1997, this 39-item self-report questionnaire comprehensively assesses how Parkinson's symptoms affect daily functioning, emotional well-being, stigma, social support, and cognitive-communication abilities. It is the recommended instrument in major Parkinson's disease clinical trials and forms a core component of outcome measurement in movement disorders.

Key highlights

  • Comprehensive multidimensional assessment—eight domains capture the breadth of Parkinson's impact: motor (mobility, ADL), emotional (well-being, stigma), social, and cognitive dimensions
  • Extensively validated—used in hundreds of clinical trials and observational studies with demonstrated strong psychometric properties (Cronbach's α 0.70-0.90 across domains), test-retest reliability (r > 0.75), and sensitivity to disease progression and treatment effects
  • Patient-derived content—developed directly from Parkinson's patient interviews, ensuring items reflect lived experience and priorities
  • International standardization—validated in 40+ languages with published translation protocols, enabling global research and comparisons
  • Free and widely available—unrestricted access for research and clinical use, with downloadable forms, scoring guides, and reference data from the Oxford Parkinson Disease Centre
  • Responsive to change—sensitive to both decline and improvement, including effects of medication adjustments, deep brain stimulation, and rehabilitation interventions

Intuition

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How it works

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When to use it

The PDQ-39 is indicated for measuring quality of life across the Parkinson's disease spectrum: at baseline to establish disease burden and identify areas for intervention, during clinical trials as a co-primary or secondary endpoint to assess treatment benefit beyond motor symptom control, in routine clinical practice to monitor functional decline and guide supportive and pharmacologic decisions, in research investigating long-term outcomes and psychosocial factors, and in health economic analyses to estimate quality-adjusted life years (QALYs). A shorter version (PDQ-8) exists for brief screening. The PDQ-39 is less suitable for non-Parkinson's movement disorders, though some researchers use it off-label.

Strengths & limitations

Strengths
  • Comprehensive multidimensional assessment—eight domains capture the breadth of Parkinson's impact: motor (mobility, ADL), emotional (well-being, stigma), social, and cognitive dimensions
  • Extensively validated—used in hundreds of clinical trials and observational studies with demonstrated strong psychometric properties (Cronbach's α 0.70-0.90 across domains), test-retest reliability (r > 0.75), and sensitivity to disease progression and treatment effects
  • Patient-derived content—developed directly from Parkinson's patient interviews, ensuring items reflect lived experience and priorities
  • International standardization—validated in 40+ languages with published translation protocols, enabling global research and comparisons
  • Free and widely available—unrestricted access for research and clinical use, with downloadable forms, scoring guides, and reference data from the Oxford Parkinson Disease Centre
  • Responsive to change—sensitive to both decline and improvement, including effects of medication adjustments, deep brain stimulation, and rehabilitation interventions
Limitations
  • Length and completion burden—39 items require 10-15 minutes, potentially problematic for patients with advanced Parkinson's, cognitive decline, or severe motor slowing; shorter versions (PDQ-8) sacrifice detail
  • Motor confounding—patients with severe tremor, bradykinesia, or dysarthria may struggle with questionnaire completion; paper versions are less accommodating than digital with assistive features
  • Limited cognitive assessment—Cognitive dimension covers self-reported confusion and memory but does not quantify cognitive decline objectively; supplementary cognitive testing (MMSE, MoCA) needed for formal cognitive assessment
  • Score interpretation requires context—no universal clinical cutoffs for intervention; interpretation relies on comparison to population norms, previous assessments, and clinical judgment rather than absolute thresholds
  • Weak motor-QoL correlation—PDSI often correlates modestly with objective motor severity (UPDRS), reflecting that functional capacity depends on coping, medication optimization, and psychological factors as much as motor signs

Common pitfalls

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Applications

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Frequently asked

How do I interpret a PDQ-39 domain score of 45 in Stigma versus 20 in Mobility?

The Stigma score of 45 indicates moderate to severe perceived social stigma and embarrassment about Parkinson's in public; this patient likely restricts social activity and worries about others' perceptions. The Mobility score of 20 indicates minimal mobility impairment. This pattern—high stigma, low motor impairment—suggests a patient with relatively preserved physical function but significant psychological burden; psychological intervention, support groups, and stigma-reduction counseling may be more impactful than motor-focused therapy.

Should I use PDQ-39 or PDQ-8 for routine clinical monitoring?

PDQ-8 (shorter, 8 items) is appropriate for routine clinic visits and population screening because it samples one item from each dimension and requires only 2-3 minutes. Use full PDQ-39 (39 items) for baseline comprehensive assessment, research studies, and clinical trials where detailed dimensional profiles guide intervention planning. PDQ-8 correlates highly with PDQ-39 overall (r > 0.9) but loses dimensional detail.

How does PDQ-39 relate to UPDRS motor scores?

Correlation is typically weak to moderate (r = 0.20-0.50). A patient with high UPDRS motor score may report low PDQ-39 (good coping, optimized medication) or vice versa (low motor severity but high stigma and emotional distress). This independence justifies using both measures: UPDRS for objective motor assessment, PDQ-39 for subjective quality-of-life impact.

Is PDQ-39 appropriate for patients with dementia (PD-D or DLB)?

PDQ-39 is less reliable in advanced cognitive decline because valid self-report requires intact cognition. For patients with mild cognitive impairment, assess carefully and note limitations. For moderate-severe dementia, consider proxy-reported versions (not standard) or supplementary caregiver burden measures (e.g., Zarit Burden Interview). Combining PDQ-39 with cognitive screening (MoCA, MMSE) helps contextualize responses.

Sources

  1. 1.
    Jenkinson, C., Fitzpatrick, R., Peto, V., Greenhall, R., & Hyman, N. (1997). The Parkinson's Disease Questionnaire (PDQ-39): Development and validation of a Parkinson's disease summary index score. Age and Ageing, 26(5), 353-357.
  2. 2.
    Peto, V., Jenkinson, C., Fitzpatrick, R., & Greenhall, R. (1995). The development and validation of a short measure of functioning and well-being for individuals with Parkinson's disease. Quality of Life Research, 4(3), 241-248.
  3. 3.
    Martínez-Martín, P., Rodríguez-Blázquez, C., Alvarez, M., Arakaki, T., Bergareche, A., Chade, A., ... & Grupo Centros Colaboradores de la Sociedad Española de Neurología para la validación de escalas en neurología. (2009). Expanded and independent validation of the Movement Disorder Society-sponsored unified Parkinson's disease rating scale (MDS-UPDRS). Journal of Parkinson's Disease, 3(3), 271-283.

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ScholarGate. (2026, June 3). PDQ-39. ScholarGate. https://scholargate.app/health-outcomes/pdq-39

Parkinson's Disease Questionnaire-39 | ScholarGate