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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 Disease population 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; Mart¨ªnez-Mart¨ªn 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) 

• Excellent Internal 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 ¨C 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 

• Excellent Convergent Validity (r = 0.60) 

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

• Poor to Excellent Convergent 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 

• Excellent Convergent Validity (r = 0.66) 

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

• Adequate Convergent Validity (r = 0.41) 

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

• Poor to Adequate Convergent Validity (r = 0.08-0.58) 

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

• Excellent Convergent Validity (r = 0.75) 

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

• Adequate to Excellent Convergent 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 

• Excellent Convergent Validity (r = 0.73) 

PDQ-39 ADL Subscale and Barthel Index 

• Poor Convergent Validity (r = 0.30) 

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

• Adequate Convergent 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 Sample n = 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 appeared lessresponsive 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 in physical areas 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 in psychosocial areas 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)