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Parkinson's Disease Questionnaire - 39

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Purpose

  • The PDQ-39 is a 39-item self-report questionnaire, which assesses Parkinson’s disease-specific health related quality over the last month
  • Assesses how often patients experience difficulties across the 8 quality of life dimensions 
  • Assesses impact of Parkinson’s Disease (PD) on specific dimensions of functioning and well-being

Link to Instrument

Instrument Details

Acronym PDQ - 39

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/

Diagnosis/Conditions

  • Parkinson's Disease & Movement Disorders

Populations

Parkinson's Disease
Non-Specific Patient Population
Movement and Gait Disorders

Key Descriptions

  • 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

Equipment Required

  • Paper copy of PDQ-39
  • Pencil/ Pen

Time to Administer

10-20 minutes

Required Training

No Training

Age Ranges

Adult

18 - 64

years

Elderly Adult

65 +

years

Instrument Reviewers

Initially reviewed by Terry Ellis PT, PhD, NCS and Laura Savella, SPT, and the PD EDGE task force of the Neurology Section of the APTA in 4/2013

ICF Domain

Participation

Measurement Domain

General Health

Professional Association Recommendation

Recommendations for use of the instrument from the Neurology Section of the American Physical Therapy Association’s Multiple Sclerosis Taskforce (MSEDGE), Parkinson’s Taskforce (PD EDGE), Spinal Cord Injury Taskforce (PD EDGE), Stroke Taskforce (StrokEDGE), Traumatic Brain Injury Taskforce (TBI EDGE), and Vestibular Taskforce (Vestibular EDGE) are listed below. These recommendations were developed by a panel of research and clinical experts using a modified Delphi process.

 

For detailed information about how recommendations were made, please visit: 

 

Abbreviations:

 

HR

Highly Recommend

R

Recommend

LS / UR

Reasonable to use, but limited study in target group  / Unable to Recommend

NR

Not Recommended

 

Recommendations Based on Parkinson Disease Hoehn and Yahr stage: 

 

I

II

III

IV

V

PD EDGE

HR

HR

HR

HR

HR

 

Recommendations for entry-level physical therapy education and use in research:

 

Students should learn to administer this tool? (Y/N)

Students should be exposed to tool? (Y/N)

Appropriate for use in intervention research studies? (Y/N)

Is additional research warranted for this tool (Y/N)

PD EDGE

Yes

Yes

Yes

Not reported

Considerations

  • May be less suitable to use in earlier H&Y stages of Parkinson’s disease, as indicated by large floor effects in mildly perceived PD and bias toward the more severe end of health impairments

Do you see an error or have a suggestion for this instrument summary? Please e-mail us! 

Parkinson's Disease

back to Populations

Standard Error of Measurement (SEM)

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)

Minimal Detectable Change (MDC)

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)

Normative Data

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: 

Domain 

Clinic sample mean (SD), n = 201 

Postal survey sample mean(SD), n = 137 

Mobility 

41.71(31.62) 

66.59(28.25) 

ADL 

40.40(28.02) 

55.82(28.23) 

Emotions 

31.90(22.13) 

43.25(23.88) 

Stigma 

30.86(26.26) 

34.67(29.00) 

Social

13.69(20.91) 

24.25(24.08) 

Cognitions 

33.36(22.91) 

47.41(23.08) 

Communication

25.69(22.95) 

37.09(24.35) 

Body Pain 

40.79(28.14) 

52.18(24.04) 

 

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

Domain 

H&Y Stage 1 

H&Y Stage 2 

H&Y Stage 3 

H&Y Stage 4/5

Mobility 

15.69(21.13) 

39.04(25.81) 

49.77(28.67) 

77.40(19.64) 

ADL 

18.69(17.78) 

38.80(26.69) 

49.81(21.76) 

67.36(20.62) 

Emotions 

22.30(18.59) 

34.29(23.23) 

33.90(23.65) 

38.72(19.75) 

Stigma 

19.09(19.98) 

32.50(27.68) 

29.55(23.87) 

45.38(26.26) 

Social 

10.71(19.34) 

13.98(20.73) 

14.29(21.91) 

17.86(18.12) 

Cognitions 

20.14(15.39) 

34.06(24.20) 

37.20(19.41) 

47.40(22.79) 

Communication

13.19(18.51) 

23.36(21.56) 

34.09(21.96) 

40.97(21.41) 

Body pain 

28.60(24.96) 

39.97(26.43) 

41.67(28.64) 

58.68(26.75) 

PD-Summary Index 

18.39(14.37), n = 33 

31.60(17.00), n = 56 

36.53(19.64), n = 20 

48.59(15.07), n = 18

Test/Retest Reliability

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)

Interrater/Intrarater Reliability

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)

Internal Consistency

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; 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) 

  • 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)

Construct Validity

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 

  • 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 

Domain 

Hoehn and Yahr, n = 131 

Columbia Scale 

Mobility 

0.63 

0.54 

ADL 

0.58 

0.56 

Emotions 

0.27 

0.22 

Stigma 

0.31 

0.29 

Social 

0.16 

0.08 

Cognitions 

0.40 

0.35 

Communication 

0.45 

0.42 

Body Pain 

0.32 

0.19 

 

(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)

Content Validity

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

Face Validity

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.

Floor/Ceiling Effects

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 

 

United States 

Canada 

Italy 

Spain 

Japan 

Mobility 

8.6/3.2 

5.5/3.1 

2.9/6.8 

8.0/3.0 

4.0/4.0 

Activities of daily living 

8.6/4.9 

6.3/2.3 

6.3/5.4 

12.0/3.5 

5.0/6.0 

Emotional well-being 

12.4/2.2 

6.3/0.8 

2.0/2.0 

6.5/1.0 

5.9/1.0 

Stigma 

31.4 /1.1 

25.0 /2.3 

17.6/1.0 

45.0 /0.5 

31.7 /0.0 

Social support 

50.8 /1.1 

52.8 /0 

2.9/1.0 

68.5 /1.5 

56.4 /0.0 

Cognitions 

5.4/1.6 

6.3/0.8 

9.8/1.0 

15.5/0.5 

11.9/0.0 

Communications

5.4/1.6 

25.8 /0.8 

19.0/0.5 

46.5 /1.0 

39.6 /0.0 

Bodily discomfort 

10.3/2.7 

3.9/3.9 

9.8/1.5 

10.5/0.5 

13.9/2.0 

Index 

0/1.1 

0/0 

0/0 

0/0 

0/0

Responsiveness

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 
 

Entacapone 

Placebo 

 

PDQ-39 Total and Domain Scores 

Baseline 

Change Score 

Baseline 

Change score 

P- Value 

Total Score 

30.2(15.48) 

-0.7(0.46) 

30.3(13.14) 

1.6(0.46) 

< 0.001

Mobility 

29.2(25.47) 

0.7(0.76) 

29.2(21.90) 

4.2(0.76) 

0.001

ADL 

31.4(21.60) 

-3.0(0.67 

31.6(20.09) 

0.8(0.66) 

< 0.001

Emotion 

25.0(17.96) 

-0.9(0.67) 

25.4(16.81) 

0.6(0.67) 

0.13 

Stigma 

19.3(20.00) 

-1.8(0.68) 

18.8(18.88) 

-0.2(0.68) 

0.10 

Social Support 

58.2(20.11) 

-0.6(0.90) 

58.5(18.62) 

1.4(0.89) 

0.13 

Cognition 

30.1(20.00) 

-0.2(0.71) 

25.0(20.03) 

0.8(0.71) 

0.27 

Communication 

    

0.33 

Bodily Discomfort

34.2(21.36) 

-1.0(0.78) 

33.7(20.04) 

0.4(0.77) 

0.19 

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 

 

AE v. CON 

FBF v. CON 

AE v. FBF 

AE & FBF v. CON 

Change in means at 4 months: mean difference (SD) 

-1.8(1.7) [95% CI: -5.2 to 1.6] 

-1.1 (1.7) [95% CI: -4.5 to 2.3] 

-0.6(1.7) [95% CI: -4.0 to 2.8] 

-1.5(1.5) [95% CI: -4.4 to 1.5] 

Change in means at 10 months: mean difference (SD)

-2.0(2.1) 

[95% CI:-6.1 to 2.1] 

-3.1(2.0) [95% CI:-7.2 to 0.9] 

1.2(2.1) [95% CI-3.0 to 5.3] 

-2.6(1.8) [95% CI:-6.1 to 1.0] 

Change in means at 16 months: mean difference (SD)

-3.9(2.5) [95% CI:-8.8 to 1.0] 

-3.8(2.3) [95%CI:-8.5 to 0.8] 

-0.1(2.4) [95% CI:-4.9 to 4.7] 

-3.9(2.1) [95%CI:-8.0 to 0.2] 

(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

Movement and Gait Disorders

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Standard Error of Measurement (SEM)

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)

Minimal Detectable Change (MDC)

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)

Internal Consistency

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)

Non-Specific Patient Population

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Minimally Clinically Important Difference (MCID)

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)

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