Parkinson's Disease Questionnaire - 39 (2024)

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Area of Assessment

Activities of Daily Living
Attention & Working Memory
Cognition
Communication
Depression
Functional Mobility
Quality of Life
Social Relationships
Social Support

Assessment Type

Patient Reported Outcomes

Administration Mode

Paper & Pencil

Cost

Free

Cost Description

The payment of fees depends on the proposed use and specific measure being licensed. A general rule is that for strictly non-commercial academic use or for publicly funded healthcare use, licenses are provided free of charge. However, there may be fees for support materials such as comprehensive manuals and/or language translations.
Additional cost and licensing information is available on the Oxford University Innovation Click to License Portal: https://innovation.ox.ac.uk/outcome-measures/parkinsons-disease-questionnaire-pdq-39-pdq-8/

• Most frequently used disease-specific measure of health status.
• British version designed by Peto et al., translated to English version by Bushnell and Martin and into more than 40 other languages.
• Initial 65-item version finalized to 39-item version based on statistical criteria 39-multiple-choice items covering 8 dimensions (number of items in each dimension):
  1) Mobility (10, #1-10)
  2) Activities of daily living (ADL) (6, #11-16)
  3) Emotional well-being (6, #17-22)
  4) Stigma (4, #23-26)
  5) Social support (3, #27-29)
  6) Cognition (4, #30-33)
  7) Communication (3, #34-36)
  8) Bodily discomfort (3, #37-39)
• All items are assumed to impact QoL and must be answered to compute scores for each dimension.
• Answer items based on experiences from the preceding month.
• 5-point ordinal scoring system:
  0 = never
  1 = occasionally
  2 = sometimes
  3 = often
  4 = always
• Each dimension total score range from 0 (never have difficulty) to 100 (always have difficulty). Lower scores reflect better QoL.
• Dimension score = sum of scores of each item in the dimension divided by the maximum possible score of all the items in the dimension, multiplied by 100.
• Overall score can be summarized in the Parkinson’s Disease Summary Index (PDSI) or PDQ-39 Summary Index (PDQ-39 SI).
• PDSI or PDQ-39 SI = sum of dimension total scores divided by 8.
• Parkinson’s Disease Questionnaire - 8 (PDQ-8) is the short version, containing 8 specific PDQ-39 items. The item that most highly correlated to the dimension was selected (#7, 12, 17, 25, 27, 31, 35, 37).

Number of Items

39

• Paper copy of PDQ-39
• Pencil/ Pen

Required Training

No Training

ICF Domain

Participation

Measurement Domain

General Health

Parkinson’s Disease (PD)Population for each Dimension:

Fitzpatrick, et al, 2004):

• Mobility (6.25) - Using the 1-SEM criterion, 6-points change in the mobility dimension is unlikely to be due to measurement error, and may be considered on a minimum true change in score. SEMs for other dimensions indicate increasingly large change scores are required to be considered meaningful beyond measurement error.
• ADL (8.54)
• Emotional well-being (7.26)
• Stigma (10.82)
• Social support (12.50)
• Cognition (11.29)
• Communication (10.74)
• Bodily discomfort (12.49)

(Martinez-Martin, 2007; Tan, et al, 2004; Fitzpatrick, et al, 2004; Schrag, et al, 2009; Luo, et al, 2005)

• Mobility (5.85-11.61)
• ADL (6.96-11.46)
• Emotional well-being (8.26-13.56)
• Stigma (5.57-13.67)
• Social support (7.84-17.61)
• Cognition (8.54-12.34)
• Communication (6.67-14.95)
• Bodily discomfort (9.94-16.37)

PD population for each dimension:

(Fitzpatrick, et al, 2004)

• Mobility (12.24)
• ADL (16.72)
• Emotional well-being (14.22)
• Stigma (21.21)
• Social support (24.50)
• Cognition (22.12)
• Communication (21.04)
• Bodily discomfort (24.48)

Ecuadorian version PD population for each dimension:

(Martinez-Martin, et al, 2005)

• Mobility (18.74)
• ADL (19.29)
• Emotional well-being (29.43)
• Stigma (37.90)
• Social support (48.80)
• Cognition (34.20)
• Communication (41.47)
• Bodily discomfort (45.37)

Parkinson's Disease:

(Hagell et al, 2007; n = 202, mean age = 69.8(10.0); PD duration = 8.7(6.6), H&Y Stage (median (Q1-Q3); min-max) = III(II-IV); I-V)

Descriptive scores by PDQ-39 domain:

• Mobility = 42.95(28.43)
• ADL = 38.94(24.76)
• Emotional well-being = 37.92(21.05)
• Stigma = 27.54(23.17)
• Social Support = 14.78(18.08)
• Cognitions = 33.03(20.35)
• Communication = 27.99(24.19)
• Bodily discomfort = 40.91(24.07)

(Jenkinson et al, 1997)

Clinic sample,n =146, mean age = 66.09(9.02), years since PD diagnosis = 6.73(range < 1-30). Postal survey sample,n= 227, mean age = 70.30(8.97), years since PD diagnosis = 8.6(range < 1-32)

Descriptive statistics by PDQ-39 domain for clinic and postal survey samples:

Descriptive Data of Mean (SD) by H&Y Stage:

Parkinson's Disease:

(Luo et al, 2010; Marinus et al, 2002; Martinez-Martin et al, 2007; Damiano et al, 1999; Hagell et al, 2007; Krikman et al, 2008; Ma et al, 2005; Katsarou et al, 2001; Bushnell et al, 1999; Peto et al, 1995; Carod-Artal et al, 2007; Luo et al, 2005)

Test-retest: High (0.68-0.95):

• Mobility (0.89-0.95)
• ADL (0.93-0.96)
• Emotional well-being (0.90-0.95)
• Stigma (0.88-0.95)
• Social support (0.66-0.92)
• Cognition (0.84-0.93)
• Communication (0.86-0.90)
• Bodily discomfort (0.80-0.91)

Interclass correlation coefficient (ICC) For each dimension:

• Mobility (0.76-0.88)
• ADL (0.81-0.87)
• Emotional well-being (0.62-0.83)
• Stigma (0.67-0.90)
• Social support (0.56-0.86)
• Cognition (0.71-0.80)
• Communication (0.70-0.90)
• Bodily discomfort (0.67-0.83)

Test-retest Reliability of the PDQ-39 4 weeks apart (King et al, 2013)

• PDQ-39 Total Score (ICC = 0.79)

Inter-rater agreement between Patient scores and Proxy Scores on the PDQ-39

Flemming A et al, 2005); n = 64 patient/proxy pairs. Patients:n= 64, mean age = 74.41(5.72), mean H&Y Stage = 2.87(0.90), 38.7% below H&Y 3, 61.3%at or above H&Y 3; Proxies: All but 5 were female, 90.6% were spouses

Agreement between patient and proxy was Adequate for all PDQ-39 domains and total score, except for the following domains: Stigma, Cognition, and Communication.

• PDQ-39 Total Score (ICC = 0.55)
• Mobility (ICC = 0.66)
• ADL (ICC = 0.67)
• Emotional well-being (ICC = 0.47)
• Stigma (ICC = 0.35)
• Social support (ICC = 0.40)
• Cognition (ICC = 0.38)
• Communication (ICC = 0.38)
• Bodily discomfort (ICC = 0.56)

Parkison’s Diseasepopulation for each dimension:

(Martinez-Martin et al, 2007; Luo et al, 2010; Brown et al, 2009; Ziropada et al, 2009; Tan et al, 2004; Jenkinson et al, 2003; Katsarou et al, 2001; Damiano et al, 2000; Damiano et al, 1999; Fitzpatrick et al, 1997; Bushnell et al, 1999; Hagell et al, 2003; Hagell et al, 2007; Martínez-Martín et al, 2005: Tsang et al, 2002; Peto et al, 1995;Jenkinson et al, 1995, Krikmann et al, 2008; Carod-Artal et al, 2007; Ma et al, 2005; Luo et al, 2005)

• Mobility (0.85-0.96)
• ADL (0.83-0.94)
• Emotional well-being (0.79-0.91)
• Stigma (0.54-0.90)
• Social support (0.13-0.87)
• Cognition (0.63-0.87)
• Communication (0.65-0.87)
• Bodily discomfort (0.56-0.87)

Parkison’s Disease:

PDQ-39 Summary Index Score (Jenkinson et al, 1997; Damiano et al, 2000; Jenkinson et al, 2007)

• ExcellentInternal Consistency (Chronbach’s a = 0.84-0.94)

PDQ-39 Item to Total Correlation (Peto et al, 1995)

• Ranges from poor to excellent (Chronbach’s a = 0.67-0.91)

Parkinson’s Disease:

Construct validity:

(Jenkinson et al, 1997; Marinus et al, 2002; Bushnell et al, 1999; Martinez-Martin et al, 2008)

• Better represents the impact of QoL in patients with PD than a more generic measure (SF-36)
• Used as a benchmark measure to determine psychometric properties of other outcome measures (Scales for Outcomes in Parkinson’s Disease – Psychosocial Questionnaire (SCOPA-PS))

Convergent Validity:

(Peto et al, 1995)

• H&Y Index and PDQ-39 significantly correlated for all dimensions except Social Support dimension
• Hoehn & Yahr Index has highest correlation with PDQ-39 Mobility dimension (r = 0.63)

(Schrag et al, 2000; Schrag, Jahanshahi, and Quinn, 2000)PDQ-39 and H&Y Score

• ExcellentConvergent Validity (r = 0.60)

(Fitzpatrick et al, 1997; Jenkinson et al, 1995)PDQ-39 Subscales and H&Y Score, range

• Poor to ExcellentConvergent Validity (r = 0.16-0.72)

(Jenkinson et al, 1997)H&Y Stage and PDQ-39 domain scores

(Schrag et al, 2000; Schrag, Jahanshahi, and Quinn, 2000)PDQ-39 and Schwab and England Scale

• ExcellentConvergent Validity (r= 0.66)

(Schrag, Jahanshahi, and Quinn, 2000)PDQ-39 and UPDRS-ME

• AdequateConvergent Validity (r = 0.41)

(Fitzpatrick et al, 1997;Jenkinson et al, 1995)PDQ-39 Subscales and Columbia Score, range

• Poor to AdequateConvergent Validity (r = 0.08-0.58)

(Schrag et al, 2000)PDQ-39 SI and EQ-5D

• ExcellentConvergent Validity (r = 0.75)

(Peto et al, 1995)PDQ-39 Subscales and SF-36, range

• Adequate to ExcellentConvergent Validity (r = 0.34-0.80)

(Schrag et al, 2000)PDQ-39 SI and Becks’s DI

• Excellent Convergent Validity (r = 0.68)

(Harrison et al, 2000);n =67, mean age= 70.2(7.9), mean disease duration = 5.5(5.0)PDQ-39 Emotional Subscale and Beck’s DI

• ExcellentConvergent Validity (r = 0.73)

PDQ-39 ADL Subscale and Barthel Index

• PoorConvergent Validity (r = 0.30)

(Schrag et al, 2000; Schrag, Jahanshahi, and Quinn, 2000)PDQ-39 and MMSE

• AdequateConvergent Validity (r = -0.32)

Parkinson’s Disease:

(Haapaniemi et al, 2004; Marinus et al, 2002; Peto et al, 1995; Marinus et al, 2003; Damiano et al, 1999)

• Items developed on the basis of in-depth interviews with patients rather than relying on the literature of clinical scales in this field
• Good, but lacks items addressing transfers, night time sleep problems, sexuality, self-image, and role functioning is insufficiently

Parkinson’s Disease:

(Jenkinson et al, 1997; Haapaniemi et al, 2004; Marinus et al, 2002; Harrison 2000;)

• Adequate
• Capable of detecting disease deterioration but responsiveness to improvement still needs further assessment.
• Mobility, ADL, stigma, and social support dimensions responsive to deterioration in health state.

Parkinson’s Disease:

(Damiano,et al, 2009)

• Absent or negligible (0-14.9%)
• Substantial in Mobility Domain (24.6%) and social support domain (29.2-54%)

(Hagell et al, 2007)

• Mean across the 8 subscales = 15%

(Hagell et al, 2007; Carod-Artal et al, 2007)

• Not significant (0.7024%) except in 3 dimensions:
  • Stigma (20.3-55.6%)
  • Social Support (25.1-68.5%)
  • Communication (24.3-72.2%)

(Jenkinson et al, 2003)n= 822, mean age = 68.35; n = 676 respondents complete all items on the PDQ-39

Percentage of respondents scoring at the floor/ceiling on the eight dimensions of the PDQ-39 by country

Parkinson’s Disease:

Peto et al, 1995; clinic sample,n= 136, mean age = 66.1 (range 42-85); years since PD diagnosis = 6.7 (range < 1-30)

Retrospective comparison of patients rating change in disease status as little/much better, the same, or little/much worse over 4 months.

• PDQ-39 standardized response means for mobility (0.55) and ADL (0.43) agreed significantly for patients reporting that they were worse at 4 months
• No significant correlations were found between changes in PDQ-39 scores and changes in SF-36 physical and mental summary scores

(Fitzpatrick et al, 1997)n= 51, 4 month interval; observation study

• SRM for PDQ-39 Mobility Subscore: 0.55
• SRM for PDQ-39 ADL Subscore: 0.43
• No significant change in PDQ-39 compared with change in Columbia Score
• No significant change in PDQ-39 compared with change in H&Y Scale
• Significant change in PDQ-39 compared with change in SF-36
• Significant change in PDQ-39 compared with self-reported change

(Harrison et al, 2000)

• Over 18 months of observation, there was a significant decline in overall PDQ-39SI and linear worsening on four subscales (Mobility, ADL, Stigma, and Social Support)
• These trends showed significant deterioration in HRQoL as assessed by the PDQ-39, but not the General Health questionnaire-28

(Schrag et al, 2009; Observation study)

Clinic- based Samplen= 145, mean age = 67.3(9.6), Mean disease duration = 9.3(7.4);n= 128 at 1 year follow-up

• After 1 year, there was some responsiveness to change on the PDQ-39 only in the subscales of:
  • Communication (ES = -0.21, SRM = -0.27, p = 0.004)
  • Bodily pain (ES = -0.17, SRM = -0.23, p = 0.02)
  • Summary index (ES = -0.13, SRM = -0.23, p = 0.02)

Community-based sample:n= 124, mean age = 68.0(10.4), Mean disease duration = 5.5(28.0);n= 64 at 1 year follow-up;n= 68 at 4-year follow up

• After 1 year, there was significant or moderate internal responsiveness on at least one measure in the subscales of:
  • ADL (ES = -0.18, SRM = -0.27, p = 0.09)
  • Social support (ES = -0.32, SRM = -0.25, p = 0.07)
  • Communication (ES = -0.17, SRM = -0.23, p = ns)
• After 4 years, there was significant of moderate responsiveness in the subscales of:
  • Mobility (ES = 0.23, SRM = 0.35, p = 0.05)
  • ADL (ES = 0.34, SRM = 0.54, p = 0.002)
  • Stigma (ES = 0.39, SRM = 0.34, p = 0.04)
  • Cognition (ES = 0.23, SRM = 0.25, p = 0.12)
  • Communication (ES = 0.28, SRM = 0.30, p = 0.07)
• Overall, the PDQ-39 and other HRQoL measures appearedlessresponsive markers of overall progression of patients on antiparkinsonian treatment than measures of disability and the H&Y Scale

Responsiveness to Pharmacological Intervention(Olanow et al, 2004); Entacapone group,n= 373, mean age = 69.8(9.3), H&Y Stage = 2.12(0.4), duration of PD = 3.6(3.1); Placebo group,n= 377, mean age = 70.2(9.4), H&Y Stage = 2.17(0.3), duration of PD = 4.5(3.5)

• The enctacapone group experienced significant improvements, compared to the placebo group, in PDQ-39 total score, as well as the Mobility and ADL domains
• No other change scores were significant

Responsiveness to Exercise Intervention

(Schenkman et al, 2012,n= 121, H&Y Stages 1-3; comparisons were made at 4, 10, and 16 months for 3 groups)

• Aerobic Endurance Group (AE)
• Flexibility/Balance/ Functional Training Group (FBF)
• Control Group (CON)

Found no group differences in change in PDQ-39 score following exercise intervention

(Tickle-Degnen et al, 2010)n= 117, mean age = 66.3(9.0), years since diagnosis = 7.1(5.7), H&Y Stages Range = 2-3; Patients with PD were divided into 3 groups of: 0 hours, 18 hours (self-management & social group), 27 hours (self-management & transfer-in-training group) conditions.

• A decrease of at least 5.39 points on the PDQ-SI was used as the criterion for clinically relevant improvement.
• Immediately post interventions: 54% of participants in rehab were improved vs. 18% receiving no therapy (p < 0.0001)
• At 2 months follow-up: 34% who received rehab were improved vs. 20% receiving no therapy (p = 0.11)
• At 6 months follow-up: 38% who received rehab were improved vs. 10% receiving no therapy (p < 0.001)
• At post intervention the following domains had the strongest response to the intervention:
  • Communication (p= 0.04), significant
  • Mobility (p= 0.08)
  • ADL (p= 0.14)
• At two months follow-up, communication (p= 0.03), significant, had the strongest response, while at six months; mobility (p= 0.03), significant, had the strongest response.
• Descriptive patterns in the PDQ-39 domain scores suggest that individuals receiving physical intervention in home and community sessions (27 hrs) received more benefit inphysicalareas of function, while those who spent additional hours in talking with one another about their “normal” lives in the social session (18 hrs) received more benefit inpsychosocialareas of function.

King et al, 2013; Agility Boot Camp Exercise Group (ABC)n= 20, mean age = 65.7(8.3), H&Y Stage = 2.5(0.8); Aerobic Treadmill Training Group (TT)n= 19, mean age = 65.1(7.3), H&Y Stage = 2.4(0.6)

• Only the PDQ-39 ADL domain score changed significantly in response to an exercise intervention (p = 0.01)
• The PDQ-39 Mobility domain score change approached significance (p = 0.09) following exercise intervention

Multiple Systems Atrophy (MSA):

(Schrag, et al, 2007)

• Mobility (5.78)
• ADL (9.72)
• Emotional well-being (10.43)
• Stigma (12.25)
• Social support (14.87)
• Cognition (13.36)
• Communication (11.91)
• Bodily discomfort (13.40)

MSA population:

(Schrag, 2007)

• Mobility (14.98)
• ADL (26.87)
• Emotional well-being (28.85)
• Stigma (33.94)
• Social support (41.16)
• Cognition (37.05)
• Communication (33.09)
• Bodily discomfort (37.20)

MSA population for each dimension:

(Schrag et al, 2007)

• Mobility (0.94)
• ADL (0.92)
• Emotional well-being (0.90)
• Stigma (0.81)
• Social support (0.32)
• Cognition (0.77)
• Communication (0.78)
• Bodily discomfort (0.77)

Patients reporting their health as ‘about the same’ or ‘a little worse’, mean change in score for each dimension (‘about the same’, ‘a little worse’):

(Peto, 2001)

• Mobility (-1.5, -3.2)
• ADL (-0.7, -4.4)
• Emotional well-being (0.3, -4.2)
• Stigma (0.8, -5.6)
• Social support (-1.2, -11.4)
• Cognition (0.4, -1.8)
• Communication (-0.8, -4.2)
• Bodily discomfort (1.3, -2.1)