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Table 2 Study Characteristics & Results

From: Systematic review and meta-analysis of clinical effectiveness of self-management interventions in Parkinson’s disease

Study
Author, Year, Country
Population
& notable exclusions
Sample
Participants (n);
Age;
H&Y Stage
Intervention & Comparator Outcome
Primary (underlined) & Relevant Secondary (Measure)
Results Risk of Bias
Design: Randomised Controlled Trials
 Dobkin [19], 2020
USA
People with PD + depression (current); age 35-85 yr; stable condition; family/friend willing to participate.
Excluded: MoCA< 21, medically unstable or primary psychotic/bipolar/substance abuse disorder.
n = 72
Mean age 65 yrs.
H&Y not given
PD-informed telephone-Cognitive Behaviour Therapy (T-CBT) with self-management in addition to ‘enhanced TAU’ vs ‘Enhanced’ treatment as usual: TAU+ clinical monitoring by study staff & provision of a resource list. Difference in mean improvement CBT vs TAU (95% CI) Some concerns
Depression (HAM-D) 6.88 (4.73–9.03) at end of intervention
5.15 (2.99–7.31) at 6 month follow-up
F4,249 = 14.89, p < 0.0001 at end of intervention; and at 6-month follow-up (p < 0.0001)
QoL (Mental Health composite Score (MCS) of the SF-36) 4.48 (−0.86 to 9.83) at end of intervention
4.70 (− 0.64 to 10.04) at end of 6 month follow-up
F4,241 = 3.62, p = 0.007
Other reported outcomes: Responder status (Clinical Global Impression Improvement Scale);
Depression severity (BDI); Anxiety (HAM-A); Negative thinking (Inference Questionnaire)
 Navarta-Sanchez, [20] 2020
Spain
(cluster randomisation)
People with PD (any stage), fluent in Spanish, and their informal caregivers
Excluded: Cognitive impairment.
n = 140 (PD) + 127 (carers)
Mean age, PD: 75 yrs. (intervention) & 72 yrs. (control).
Mean age, carers: 67 yrs. (intervention) & 64 yrs. (control).
H&Y range I-V (majority I-III)
Psychoeducation vs Control: education only Mean (SD) pre/post/6 months follow-up for intervention vs control High
QoL (PDQ-39) Pre 21.38 (14.12), post 20.42 (14.78), 6 m 24.61 (18.54) vs pre 19.44 (12.17), post 17.05 (12.87), 6 m 23.69 (14.92)
Time effect 8.49 (p < 0.001), time*group interaction 0.59 (p = 0.554)
Caregiver QoL (SQLC) Pre 119.11 (22.55), post 120.39 (23.68), 6 m 119.64 (21.86) vs pre 117.83 (23.49), post 117.02 (23.57), 6 m 114.00 (27.33)
Time effect 0.96 (p = 0.386), Time*group interaction 1.89 (p = 0.157)
Psychosocial adjustment (PAIS-SR) People with PD:
Pre 35.05 (16.90), post 32.29 (16.42), 6 m 37.80 (18.34) vs pre 34.12 (19.59), post 30.68 (17.72), 6 m 37.82 (17.34)
Time effect 8.28 (p = 0.001), Time*group interaction 0.14 (p = 0.868)
Caregivers:
Pre 32.41 (16.33), post 27.70 (14.51), 6 m 30.70 (13.04) vs pre (28.31 (17.06), post 24.36 (14.87), 6 m 27.29 (18.91)
Time effect 3.88 (p = 0.026), time*group interaction 0.03 (p = 0.967)
Coping skills (BRIEF COPE Scale) People with PD:
Pre 47.36 (9.18), post 46.34 (10.28), 6 m 46.58 (12.13) vs pre 47.36 (11.21), post 46.10 (11.39), 6 m 46.28 (11.30)
Time effect 0.76 (p = 0.471), Time*group interaction 0.01 (p = 0.988)
Caregivers:
Pre 46.41 (10.39), post 48.14 (9.53), 6 m 44.92 (8.18), vs pre 47.68 (10.21), post 49.87 (10.51), 6 m 45.13 (10.82)
Time effect 5.95 (p = 0.004), time*group interaction 0.25 (p = 0.781)
 Yuen, 2020 [16]
China
People age 18-80 yrs., with PD.
Excluded recent use of antidepressants, recent suicide attempt, history of psychosis, severe comorbidity, H&Y stage ≤4
n = 36
Median age: 60 yrs. (intervention) & 65 yrs. (control)
H&Y not given.
Conduction Exercise & Self-Accupressure vs usual care + 2 sessions of “health related talk” Mean +/− SE intervention vs control Some concerns
Quality of Life (Chinese PDQ-39) Pre 43.32(+/−4.75), post 41.32 (+/−5.22), vs pre 40.64(+/−5.31), post 41.07(+/−6.33)
Adjusted mean difference between group:
−2.25+/− 4.77 (−11.94 to 7.45); p = 0.64
Other reported outcomes: Custom-designed questionnaire: a short form of Non-motor Symptom Scale.
 Van Der Kolk, 2019 [21]
The Netherlands
People age 30-75 yrs. with PD H&Y stage I-II, stable medication. Excluded: B-blocking or anti-pscychotic medication, comorbidity that makes them unfit to do the exercises, recent psychiatric disease, dementia, MMSE< 24, unable to perform computer task, no internet at home. n = 130
Mean age 59 yrs. (intervention) & 59 yrs. (control)
H&Y 94–95% were stage 2, (range 1–2).
Home-based gamified exercise on a stationary home-trainer vs Active Control: Stretching group
Both groups had motivational app.
Intervention vs control: mean (SE) or mean (SE; 95% CI). Low
MDS-UPDRS - motor Pre 29.5 (2.7), post 29.0 (2.5) so change of 1.3 (1.8) vs Pre 27.2 (2.7), post 31.4 (2.5) so change of 5.6 (1.9). Between group difference: −4.2 (1.3; −6.9 to −1.6), p = 0.0020
Quality of life (Parkinson’s
Disease Questionnaire-39),
Pre 24.9 (2.2), post 26.0 (2.3) so change −0.2 (1.9) vs Pre 24.0 (2.2), post 26.3 (2.3) so change 0.0 (1.9)
Between group difference: − 0.2 (1.5; −3.2 to 2.8), p = 0.91
Other reported outcomes Motor scores (Mini-Balance Evaluation Systems test, Timed Up and Go, Six-minute-walk test, pegboard and finger-tapping, fall frequency); Non-motor scales (Hamilton Anxiety and Depression Scale, sleep section of Scales for Outcomes in Parkinson’s disease [SCOPA], Fatigue Severity Scale, gastrointestinal section of the SCOPA Autonomic scale, Montreal Cognitive Assessment, Trial Making Test, Test of Attentional Performance), Cardiovascular fitness (VO2 max with graded maximal exercise testing).
 Atterbury 2017 [22]
South Africa
People age 50-80 yrs. with PD, H&Y stage I-III.
Excluded: MoCA≤17, inadequate functional status, major vestibular, visual, orthopaedic or muscular condition; medication changed n study period.
N = 40
Mean Age: 65 yrs. both groups.
Mean H&Y:
2.5 (intervention); 2.4 (control), range I-III.
Home based balance exercises on DVD vs Therapist supervised balance exercises Pre – post mean +/− SD, Home vs therapist groups
Between group effect size
High
Timed Up & Go Duration
Pre 22.96(+/−10.04), post 22.89 (+/− 10.58) [p = 0.83] vs pre 19.00 (+/−3.01), post 19.14(+/− 3.29) [p = 0.87]
Between group treatment effect =0.99
Other reported outcomes: Functional Gait Analysis; Perceived balance confidence (ABC = Activity Specific Balance Confidence Scale); Intrinsic Motivation Inventory
 Collett, 2017 [18]
UK
People with PD
Excluded: Diagnosis of dementia or MMSE < 23, severe depression or psychosis
n = 105
Mean age 67 yrs.
H&Y not reported
Self-managed exercise programme vs Self-managed handwriting exercises (control) Measures listed: delta at 3 months, 6 months & 12 months, then effect size (d) for between groups, considering all 3 follow-up assessments. Small-moderate effect sizes = 0.1–0.3 Some concerns
Motor: 2 min walk 3.8(+/− 3.5); 3.4 (+/− 3.5), 6.7 (+/− 3.6); d = 0.20 (− 0.44 to 0.45)
Health & Wellbeing: EQ5D-5 L
SF-36
1(+/− 3); 3(+/− 3); 2(+/− 3); d = 0.12 (− 0.12 to 0.36)
Physical: 1(+/− 3); 1(+/− 3); 4(+/− 4); d = 0.10 (− 0.14 to 0.34)
Mental: 1(+/− 3); 2(+/− 3); 2(+/− 14); d = 0.08 (− 0.16 to 0.32)
Other reported outcomes: Other Motor Measures (MDS-UPDRS-III, 9-hole peg test for dexterity, Timed Up & Go); fitness (VO2, leg power, grip strength); non-motor symptoms (non-motor symptom questionnaire, Fatigue Severity Scale); Health status (BMI, BP, PASE)
 Collett, 2017 [17]
UK
As above: same study, different outcomes
As above As above Self-managed handwriting exercises vs Self-managed exercise programme (control) Writing (amplitude measures) [presented as above]
Total area (mm2): − 6.0 (+/− 4.1), − 2.5 +/− 3.8, − 5.5 (+/− 4.2); d = 0.32 (− 0.11 to 0.74)
% reduction in amplitude: − 10.4 (+/− 7.5), 6.0 (+/− 7.1), − 7.4 (+/− 8.8); d = 0.11 (− 0.31 to 0.53)
Some concerns
Other reported outcomes: Self-reported writing (MDS-UPDRS- item 2.7)
 Lakshminarayana 2017 [23]
UK
People with PD
Excluded: no/limited access to device or internet at home. Dementia or significant cognitive impairment. Major, serious comorbid illness.
n = 215
Mean age 60 yrs.;
H&Y not reported
Parkinson’s Tracker App (PTA) vs Control: Treatment as Usual + telephone calls GLM analysis: difference (95% CI) High
Medication Adherence (MMAS-8) 0.39 (0.04, 0.74); p = 0.0304
[ANCOVA controlling for age, gender and comorbidity: 0.38 (0.03 to 0.73);
p = 0.0301]
QoL (PDQ − 39) −0.22 (− 3.95, 3.52); p = 0.9102
Other reported outcomes: Quality of Consultations (PCQ-PD); Non-motor symptoms (NMS-Questionnaire, HADS); Beliefs about medication (Beliefs about Medication questionnaire)
 Sajatovic, 2017 [24]
USA
People with PD and depression.
Excluded those unable to walk or high falls risk; and MMSE < 24
n = 30
Mean age 70 yrs.;
H&Y range 1–3
Group exercise + chronic disease self-management* vs Self-guided individual exercise + self-guided chronic disease self-management* “No significant difference” between arms; data not given. Data pooled so results and analysis are pre/post intervention. High
Depression (MADRS) Pre mean 21.2 (SD6.3); Post 12 weeks 15.2 (8.0) p < 0.001; 24 weeks 14.2 (8.5) p < 0.001
Other reported outcomes: Self-efficacy (GSE), Cognition (MoCA), Apathy (Apathy Scale), Anxiety (Covi Anxiety scale), Sleep (SCOPA-Sleep), Motor (MDS-UPDRS-III), satisfaction with intervention (custom).
 Advocat, 2016 [25]
Australia
People with PD H&Y stage II, age 18-70 yrs., fluent in written & spoken English. n = 72
Mean age 63 yrs.
Mean H&Y 2
ESSENCE mindfulness & self-management programme vs Waitlist Control Note wait list controls received intervention after the 7 weeks so groups combined for 6 month outcomes. 7 weeks: change intervention vs control. Effect size, d. 6 months pre-post intervention and control; p for combined group. Effect size, d. High
Function & Wellbeing (PDQ39) −0.54 (−3.41 to 2.32) vs −1.53 (3.64 to 0.57)
ADL domain:
− 2.43 (− 8.11 to 3.25) vs − 2.02 (− 4.66 to 0.62) p = 0.89
−0.89 (− 3.71 to 1.93) and − 2.54 (− 6.76 to 1.67), p = 0.16.
ADL domain:
− 2.54 (− 6.7 to 1.8) and − 4.17 (− 10.75 to 2.42), p = 0.04 (d = 0.23, small)
Other reported outcomes: Mindfulness (FMI); Mood (Depression Anxiety Stress Scale); Exercise & nutrition (Health Behaviours Questionnaire)
 King, 2015 [26]
USA
People with PD plus at least 1 comorbidity; age 40-80 yrs.
Excluded moderate-severe cognitive impairment & those needing assistance with ADLs
N = 58
Mean age 64 yrs.
Mean H&Y 2.4.
Sensorimotor-based Agility Boot Camp (exercise programme). 3 delivery methods compared: 1) Home exercise
2) Individual physical therapy
3) Group class
Different pre-post: mean; median (95% CI) for home vs individual vs class Some concerns
Physical Performance Test (PPT) 0.71; 0.0 (−0.7, 2.2) p = 0.371 vs 1.81; 1.0 (0.69, 2.9) p = 0.004 vs 0.55; 0.5 (− 0.4, 1.5) p = 0.156.
Group comparison: p = 0.265
Analysis of effect modifiers: Age p = 0.086
QoL: PDQ-39 −6.65; −9.0, (− 11.6, − 1.7) p = 0.015 vs − 6.30; −5.5 (− 13.1, 0.5) p = 0.068 vs − 10.4; − 9.0 (− 16.8, − 4.0) p = 0.002
Group comparison: p = 0.448
Analysis of effect modifiers: Nil significant effects.
UPDRS-II (ADL) ADLs: − 0.65; − 1.0 (2.7, 1.4) p = 0.489 vs − 1.67; − 1.0 (− 2.9, − 4.3) p = 0.011 vs − 1.90; − 2.0 (− 4.0, − 2.0) p = 0.061
Group comparison: p = 0.691
Analysis of effect modifiers: UPDRS (p = 0.093) and comorbidity (p = 0.02)
Other reported outcomes: Balance: Mini-BESTest; Mobility: TUG, Balance confidence: Activities-Specific Balance Confidence Scale; Apathy: Lille Apathy Rating Scale; UPDRS-III; Self-efficacy (Exercise Self-Efficacy Scale). Potential confounders measured and analysed: Comorbidities, UPDRS, Age, BMI, medication, MoCA, Depression.
 Lawson, 2013 [27]
UK
People with PD and anxiety (HADS-A > 8)
Excluded: age of PD onset ≤ 45 yrs; insufficient literacy (WTAR score ≤ 80), Cognitive impairment (ACE-R score ≤ 83).
n = 54
Mean age 66 yrs.
Mean H&Y 2.4
Bibliotherapy: “What? Me Worry!?!” online self-help guided resource vs Control: Information only + 1 telephone call Mean (CI) paired pre-post difference for intervention vs control group.
p values presented are for pre-post changes; no significant differences found between groups.
Some concerns
Worry (PSWQ) − 6.94 (− 13.52 to − 0.37), p < 0.05 vs 3.40 (0.52 to 6.28), p < 0.05 (note different direction of change)
Health status (PDQ-39) 1.0 (− 4.9 to 6.9) vs 2.86 (− 5.88 to 11.60), ns
Other reported outcomes: Reactions to Uncertainty (IUS); Beliefs about worry (MCQ-30)
 A’Campo, 2010 [28]
Netherlands
People with PD + carers.
Excluded: severe psychiatric problems.
n = 64 (PD) + 46 (carers).
Mean age 65 yrs.
Mean H&Y 2.4 (intervention) & 2.3 (control)
Patient Education Program Parkinson (PEPP) vs Control: Usual Care (delayed intervention) Mean difference between intervention arm change (pre-post) and control arm change (pre-post) (95%CI). Bonferoni adjusted significance level of < 0.01. Some concerns
Psychosocial impact of disease (BELA-P-k) Patients Bothered by: 1.74 (− 1.27–4.74), p = 0.252; Need for help: 2.04 (− 2.0–6.06), p = 0.316
Carers Bothered by: 7.05 (2.96–11.14) p = 0.001;
Need for help: 11.38 (5.36–17.40) p = 0.001
QoL (PDQ-39 for patients; EQ-5D for carers) Patients 4.86 (0.98–8.73), p = 0.015
Carers Utilities − 0.10 (− 0.24–0.04) p = 0.159; VAS − 1.33 (− 11.33–8.66) p = 0.788
Other reported outcomes: Depression (Self-rated Depression Scale)
aDereli, 2010 [29]
Turkey
People with PD, H&Y stage I-III.
Excluded: MMSE< 23, disease limiting the ability to perform the exercises, medication changed during study.
n = 32
Mean age 67 yrs.
Mean H&Y 2
Education + Physiotherapist-supervised exercise vs Education + Self-managed exercise at home. Mean (SD) pre-post score difference for PT-led groups vs self-managed Some concerns
QoL (PDQLQ) 11 (−2 to 23) vs 4 (−16 to 38), p = 0.040
Health status (NHP) −10.5 (−33 to 0) vs −2 (− 13 to 40), p = 0.008
UPDRS-II −3 (−7 to 0) vs −2 (−6 to − 2), p = 0.030
Other reported outcomes: PD severity (UPDRS); Depression (BDI)
 Tickle-Degnen, 2010 [30]
USA
People age ≥ 40 yrs. with PD, H&Y stage II-III.
Excluded: MMSE≤26, GDS ≥20, unable to walk without physical assistance, unable to understand and communicate with team, home beyond travel distance to site, medical condition impairing participation
n = 117
Mean age 66 yrs.
H&Y range 2–3
Self-management rehabilitation programme (2 intensity arms) vs Control: no rehabilitation (medical therapy only) Quality of Life (PDQ39) Summary Index adjusted mean (standard error) for 27 h group vs 18 h group vs control; intensity effect, eta (95% CI). eta = magnitude of the linear relationship between hours of rehabilitation outcome [interpreted as a product moment correlation (r) effect size.]
Post intervention:
27.3 (1.1) vs 27.6 (1.1) vs 31.0 (1.1).
eta 0.23 (0.05 to 0.40), p = 0.01
2 months follow-up:
28.4 (1.0) vs 28.5 (1.0) vs 30.6 (0.9).
eta 0.16 (−0.02 to 0.34), p = 0.09
6 months follow-up:
28.2 (1.1) vs 29.2 (1.1) vs 31.5 (1.1).
eta 0.21 (0.03 to 0.38), p = 0.02
ANCOVA: effect of intervention adjusted for baseline F(2,112) = 3.98, p = 0.02
Contrast analyses: outcomes co-vary with rehabilitation intensity (group): F(1,112) = 6.48, p = 0.01 primarily due to 0-18 h (p = 0.03) and 0-27 h (p = 0.02) comparisons, not 18-27 h (p = 0.89).
Pooled rehab (18 h + 27 h) compared to control: difference 36% (CI 20–53%), p < 0.0001
Some concerns
 Grosset, 2007 [31]
UK
People with PD
Excluded: significant difficulties using pill bottle.
n = 83
Mean age 64 yrs.;
Mean H&Y 2.4
Educational: Verbal & written information vs Control: Usual Care Intervention arm change (pre-post) vs Control arm change (pre-post) High
Medication adherence (MEMS® electronic pill bottles timing adherence) Median %
+ 22% vs − 1%, p = 0.007
QoL (PDQ-SI) + 6 vs + 1.5, p = ns
Function (S&E) −7 vs −3, p = ns
Other reported outcomes: Motor (UPDRS-III)
 Pearl-Kraus, 2007 [32]
USA
People age 30-79 yrs. with PD H&Y stage II-III, able to speak & write in English, able to attend. Excluded: diagnosed cognitive impairment or MMSE < 23, significant hearing loss, education less than 9th grade. N = 48
Mean age 68 yrs.
H&Y not given
“PD-Collaborative Care” education programme with self-management vs active control: “PD Information Transfer” (education) Pre, post, mean (+/−SD) Intervention vs control. Repeated measures ANOVA to analyse. Low
Quality of Life (PDQ-39) Pre 24.6 (+/−16.1), post 25.7 (+/− 16.6), 4 weeks 28.0(+/−17.3) vs pre 29.9 (+/− 16.2), post 31.9 (13.4), 4 weeks 28.8(+/−14.6)
Pre-post: Group interaction p = 0.40, time interaction p = 0.31
Post-4 weeks: Group interaction p = 0.89, time p = 0.12
Other reported outcomes: Self-efficacy for managing chronic disease (6-item scale)
 Montgomery 1994 [33]
USA
People with PD who had applied to enrol on the Propath program. N = 322
Mean age: 68.1 yrs. (intervention); 70.6 yrs. (control)
H&Y not given.
Patient education & health promotion vs Waitlist control Mean change in score (SE) at 6 months for intervention vs control; p* = between group High
Questionnaire incorporating questions from UPDRS Summary score:
0.11 (0.74) [p = 0.89] vs 29.7 (0.75) [p = 0.0001]
P* = 0.007
Patient global assessment:
− 0.57 (1.58) [p = 0.72] vs 2.92 (1.62) [p = 0.075]
P* = 0.12
Assessment differences in final observations: mean+/−SE; intervention vs control
‘Quality of life’ questionnaire Patient Global assessment: 41.0 (1.8) vs 43.5 (2.0).
Self-efficacy (total): 904.0 (24.0) [p < 0.01] vs 795.0 (22.0)
Spouse stress: 35.0 (1.8) vs 38.2 (1.8)
Spouse assessment of participant: 12.1 (0.6) vs 11.3 (0.5)
Other reported outcomes: Exercise, medication use, health service utilization.
Randomised Controlled Trial (Crossover)
 McNaney, 2019 [34]
UK
People with PD H&Y stage I-III with acknowledged daytime drooling problem, able to understand instructions. Excluded: current pharmacological treatment for drooling; insufficient dexterity to use device. n = 27
Median age:
72 yrs. (Immediate) & 75 yrs. (Delayed)
H&Y: range II-IV, mean 2.68.
Cueing device for drooling vs Delayed intervention. Treatment as usual in the waiting period. Pre-post for Immediate Intervention vs Pre-post for Delayed Intervention; Median (IQR)
Mann-Whitney U test & Significance of between group difference
High
ROMP-Saliva Pre 22 (16–23), post 22 (17–25.5) vs Pre 20 (17–25), post 19 (17–30)
U = 83, z = 0.497, p = 0.619
Other reported outcomes: MDS-UPDRS question 2.2; Drooling diary (VAS): Severity, Duration & Frequency
Non-randomised Controlled Trials
 Hellqvist, 2020
[35]
Sweden
People with PD & care partners. Excluded: cognitive impairment affecting their ability to understand & respond to outcome measures. n = 92 (PD) + 55 (carer)
Mean age, PD: 71 yrs. (intervention), 68 yrs. (control)
Mean age carer: 72 yrs. (intervention),
69 yrs. (control).
H&Y median 3 (range 1–4) for intervention arm.
Swedish National Parkinson School (NPS) vs matched control: standard care Median (IQR) pre and post for intervention vs control. Mann–Whitney U test for comparisons between groups. Wilcoxon’s signed rank test for within group comparisons. Mod
QoL (PDQ-8 for participants with PD) Pre 28.1 (17.2–39.1), post 23.4 (14.8–37.5) [p = −0.028] vs pre 25 (12.5–37.5), post 23.4 (13.3–37.5) [p = 0.644]
Between group difference: baseline p = 0.301, post p = 0.713
Zarit Burden Interview –short form (care partners) Pre 7 (3–13), post 8 (3.25–12.75) [p = 0.090] vs pre 6 (0.7–12.5), post 5 (2–13.25) [p = 0.548]. Between group difference: baseline p = 0.495, post p = 0.659
Health status (EQ-5D) Pre 0.87 (0.71–0.93), post 0.88 (0.78–0.93) [p = 0.023] vs pre 0.86 (0.79–0.93), post 0.86 (0.79–0.91) [p = 0.866].
Between group difference: baseline p = 0.473, post p = 0.279
Life Satisfaction (LiSat-11) “Life as a whole” score:
Pre 4 (3–5), post 4.5 (4–5) [p = 0.17] vs pre 5 (4–5), post 4.5 (4–5), [p = 0.011]
Between group difference: baseline p = 0.031, post p = 0.868
Outcomes but follow-up results not reported: Perceived general health (item 1 of the RAND-36) & Function (PADLS). Other reported outcomes: Fatigue (PFS-16) Efficacy of self-management education (heiQ)
 Lyons, 2020 [36]
USA
People with PD & co-residing partner for ≥1 yr, both willing to enrol. Able to provide informed consent.
Marketed to early PD but later stages not excluded.
n = 39 (PD) + 39 (partners)
Age, PD: 71 yrs. intervention& 66 yrs. control
Age, partners: 68 yrs. intervention & 66 yrs. control.
H&Y not given.
“Strive to Thrive” Dyad Self-management programme vs Waitlist control Mean (Standard deviation): change in intervention group vs control group; group difference controlling for baseline outcome and age. Cohen’s d [0.2 ~ small, 0.5 ~ medium, 0.8 ~ large]. Mod
SF-36, Physical Health score PD: −0.28 (4.69) vs 0.34 (6.33). Group diff −2.50; d = 0.31 (greater decline in intervention group)
Spouses: − 0.86 (5.22) vs − 1.46 (6.27). Group diff − 0.22; d = 0.02
SF-36, Depressive Symptoms score PD: −0.26 (5.20) vs 0.22 (6.09). Group diff − 0.82; d = 0.14
Spouses: − 0.59 (2.90) vs 2.19 (5.68). Group diff − 1.74; d = 0.29.
Multidimensional Caregiver Strain Index (MCSI) −0.88 (3.18) vs − 0.45 (2.72)
Group diff: − 0.75; d = 0.15
Other reported outcomes: Measures of self-management behaviours and self-efficacy; Confidence to self-manage (participant and spouse); CES-D scale [Centre for Epidemiologic Studies – Depression Scale]; aerobic activity; Strength based exercise; Mental Relaxation, Illness communication
 Pappa, 2017 [37]
USA
People with PD H&Y stage I-III (+carers, but not analysed)
Excluded: suspected dementia or MMSE < 25, psychotic disorder, practical issues limiting participation (e.g. lack of transport, non-English speaking).Controls = eligible for study but unable to participate in workshop due to personal circumstances.
N = 46
[+ 6 carers – not in quant analysis]
Mean age 68 yrs.
Mean H&Y 2.2, range 1–3
Stanford Chronic Disease Self-Management Programme (CDSMP) vs Control: usual care. Pre, post Intervention vs Pre, post Control, mean (SD) Mod
Social Support (ISEL) Pre 77.8 (5.3), Post 78.4 (5.7) vs Pre 76.6 (4.5) Post 78.2 (4.9)
Fs ≤ 1.19, ps ≥ 0.28
Other outcome measures given as correlates of ISEL for the intervention group, [outcome results not presented]: Self-Efficacy (CDSES); Health status (PDQ-39); Home, community, socioeconomic & social participation and empowerment (CPI, Involvement in Life Situations Scale, Control over Participation Scale)
 Lun, 2005 [38]
Canada
People with PD H&Y stage II-III.
Excluded: unstable medication condition, other balance disorder, current regular exercise, health contraindication to exercise, dementia.
n = 19
Mean 65 yrs.
Mean H&Y 2
Self-managed exercise vs Control: Physiotherapist-supervised exercise Mean (CI) change pre-post intervention High
Motor features (UPDRS-III) Intervention (home) vs control (physio) group
UPDRSm: −5 [p < 0.022] vs −5 [p < 0.009]
Groups pooled for 16 week results: ‘continued exercise’ (CE) vs ‘discontinued’ (DE): UPDRSm: pre 24 (sd = 8), post 15 (sd = 9) vs pre 17 (sd = 5), post 13 (sd = 4)
Other reported outcomes: BBS, TUG, full UPDRS, ABC
 Lindskov, 2007 [39]
Sweden
People with PD.
Excluded significant cognitive impairment.
n = 48
Mean age:
69 yrs. (intervention), 72 yrs. (control)
Median H&Y (range):
I (I-III) (intervention)
I (I-IV) (control)
Multidisciplinary Education Programme vs Delayed intervention control Difference (pre-post) in intervention group vs difference in control group, Mean (95% confidence interval)
Between group differences evaluated by Mann-Whitney U-Test
Mod
SF-12
Physical component summary score
Mental component summary score
1. (−1.8, 5.8) vs 1.5 (−2, 5.0); p = 0.393
2.5 (− 1.0, 5.9) vs 1.1 (− 2.4, 4.6); p = 0.361
Other reported outcomes: Levodopa Equivalents
Non-Randomised Non-Controlled: Pre/Post Intervention Designs
 Li, 2020 [40]
Australia
People > 21 yrs. with PD, H&Y stage I-III, comprehend English, live in area & able to attend.
Excluded: medically unwell, significant neuropsychiatric disorder (inc cognitive impairment) that precludes consent or participation; unable to mobilize with assistance or did not have a carer to assist if they required assistance.
n = 152
Mean age 71 yrs.
Mean H&Y = 1.6 (54% = H&Y 1)
PD-Wellbeing programme: Education & Exercise Pre, post and 1 year follow-up results. Mod
Exercise behaviour Note post-intervention not assessed due to the programme impact on exercise activity.
“Exercisers”: Pre: 16%, 1 yr:44% (p < 0.001)
Exercise less than recommended: Pre: 36%, 1 yr:36%
No exercise: Pre: 48%, 1 yr: 19%
Other reported outcomes: Depression Anxiety and Stress Scale-21 (DASS-21). Univariate analysis for baseline factors and the exercise behaviour outcome performed.
 Mestre, 2020 [41]
Canada
People with PD plus care partners. 2 recruitment groups: Newly
diagnosed (< 1 yr) and advanced (diagnosis > 8 yrs. or H&Y stage ≥III)
n = 100
Newly diagnosed group mean age 69.4 yrs.
Advanced group mean age 67.3 yrs.
H&Y not given
Integrated Care Network Difference from baseline (95% confidence interval) Mod
Parkinson’s
Disease Questionnaire–8 (PDQ-8)
3 months: 1.9 (−0.4 to 4.3); p = 0.08
6 months 2.7 (0.4 to 5.0); p = 0.02
MDS-UPDRS:
Part II
3 months: 0.3 (−0.6 to 1.2); p = 0.49
6 months: − 0.02 (− 0.9 to 0.9); p = 0.97
Zarit Caregiver Burden Questionnaire. 3 months: 0 (−1.5 to 1.4); p = 0.96
6 months: 0.7 (−0.7 to 2.2); p = 0.30
Perception of support: Patient Assessment of Chronic Illness Case+ (PACIC+) 3 months: 1 (0.9 to 1.2); p < 0.0001
6 months: 1.1 (0.9 to 1.4), p < 0.0001
Other reported outcomes: Self-management (5As); MDS-UPDRS (parts I & III); Geriatric Depression Score; Program satisfaction (Likert type scale); cost analysis. Clinical Global Impression scales – data not presented.
 Horne, 2019 [42]
Australia
Overlap with Li et al study sample above
People > 21 yrs. with PD, H&Y stage I-III, comprehend English, live in area & able to attend.
Excluded: medically unwell, significant neuropsychiatric disorder (inc cognitive impairment) that precludes consent or participation; unable to mobilize with assistance or did not have a carer to assist if they required assistance.
n = 135
Mean age 71 yrs.
Mean H&Y = 1.7 (+/− 0.8)
PD-Wellbeing programme: Education & Exercise Pre, post (at 6 weeks) and 1 year follow-up results: mean (SD) Mod
Physical measures:
2-min walk distance (m)
Sit-to-stand (no. in 30s)
Timed Up & Go (seconds)
Gait velocity (m/s)
Berg Balance Scale
Pre 131.9 (41.8), post 151.9 (34.40), [p = 0.001]; 12 month (149.5) [p = 0.001]
Pre 12.49 (3.95), post 15.61 (4.25) [p = 0.001]; 12 months 14.88 (4.11) [p = 0.001]
Pre 10.12 (9.40), post 7.63 (2.91) [p = 0.001]; 12 months 7.99 (2.89); [p = 0.001]
Pre 1.54 (0.44), post 1.74 (0.43), [p = 0.001]; 12 months 1.72 (0.43), [p = 0.001]
Pre 52.2 (7.90), post 54.4 (4.40) [p = 0.001], 12 month 54.5 (3.20) [p = 0.001]
PDQ-39 Pre 34.41 (24.95), post 28.17 (21.82), [p = 0.001]; 12 months 29.46 (21.60) [p = 0.1]
Other reported outcomes: DASS-21, PFS-16
 Van Wegen, 2018 [43]
Netherlands
People with PD H&Y stage I-III, stooped posture (UPDRS item 28 scores ≥2) that can be actively corrected.
Excluded: insufficient cognitive function, relevant comorbidity.
n = 15
Mean age 70 yrs.;
H&Y not given
“UpRight” posture detection device with feedback [device inactive but monitoring for pre- phase] Posture (Trunk angle measured by device) Mean (SD) Pre 12.9 (5.9); post 7.5 (5.0); mean change = −5.4 (4.3); p < 0.01 Mod
Other reported outcomes: Satisfaction (custom survey including a VAS); Adverse event (log)
 Hermanns, 2017 [44]
USA
People age ≥ 65 yrs. with PD H&Y stage I-IV, able to speak & read English, ambulatory, with written physician approval to engage in the exercise program.
Excluded: no access to internet; inability to perform large muscle movements, cognitive impairments that prohibit participation.
n = 5
Mean age 73 yrs.
H&Y mean 1.7 (range 1–2.5)
Digital Physical Activity Tracker & Online Support Group PAAI (Physical Activity Assessment Inventory) Pre 4585, post 2620: % change −42.86 Mod
Functional Assessment of Cancer Therapy-General (FACT-G) Pre 440, post 426: % change = −3.18
Other reported outcomes: Feasibility (useage)
 Esculier 2012 [45]
Canada
People with PD; [healthy people without PD]
MMSE≥24, any comorbidity or limb condition, history of falls.
N = 11
[healthy: n = 9]
Mean age 62 yrs.
H&Y not given
Home based balance training
[study compared to paired sample of “healthy” participants – not relevant here]
Difference (pre-post), median Low
Balance:
ABC
+ 1 (ns)
Mobility:
TUG
STST
Tinetti’s POMA
Community Balance & Mobility Scale
10 m walking speed
−1.9 (p < 0.04)
+ 5 (p < 0.01)
+ 4.0 (p < 0.05)
+ 15.0 (p < 0.02)
−0.7 time to complete (p < 0.001)
Other reported outcomes: Static balance: 1-leg stance duration; programme specific evaluation (likert-type scale)
 Nelson, 2011 [46]
USA
Veterans with PD H&Y stage II-III plus spouses with ≥1 chronic medical condition.
Excluded: cognitive impairment (MMSE ≤24); depression (CES-D score ≥ 12). Excluded spouses with dementia or depression.
n = 13 (PD) + 7 (spouses);
Mean age 74 yrs.
Mean H&Y 2.5 (2–3)
Stanford Chronic Disease Self-Management Programme (CDSMP) Quality of Life (PDQ-8) Pre 30.97, Post 6 weeks 24.12, 6 months 27.70; p = ns Mod
Self-rated health status Pre 2.63, Post 6 weeks 2.89, 6 months 2.50; p = ns
Other reported outcomes: Self-efficacy (SPERC self-efficacy scale); Exercise (SPERC exercise behaviour scale); Pain & Fatigue
(SPERC VNS); Depression (CES-D)
 Gruber 2008 [47]
Canada
People with PD diagnosed within the last 3 yrs. and H&Y stage 1 or 2. N = 92
Mean age:
52.4 yrs. (site 1)
62.6 yrs. (site 2)
H&Y:
97% stages I-II; stage III n = 1 (site 1)
96% stages I-II; stage III n = 3 (site 2).
Early Management Program (self-management, focussed on exercise) Pre; post mean (SD) Mod
CISM = Chronic Illness Self-Management Questionnaire Exercise: stretching and/or strengthening:
61.4 (64.2); 91.1 (59.9), p ≤ 0.001
Exercise: aerobic:
1. (143.3); 145.9 (140.5), p = not significant
Cognitive symptom management:
1.0 (0.9); 1.5 (0.9); p ≤ 0.001
Mental stress management/relaxation:
1. (0.5); 1.5 (0.6), p ≤ 0.01
Communication with physician:
2.0 (1.5); 3.1 (1.3), p ≤ 0.05
Other reported outcomes: Functional Reach; times functional movements; walking speed; Functional Axial Rotation
 Macht, 2007 [48]
7 European countries
People with PD n = 151
Mean 64 yrs.;
H&Y mean 2, range 1–5
Patient Education Program Parkinson (PEPP) Feasibility (intervention evaluation questionnaire) Range 35–80% average agreement with positive statements and 34–71% average agreement with negative statements. Mod
QoL (PDQ-39) Pre mean 30.8 (SD 16.2); Post 30.7 (7.7); p = ns
Psychosocial impact of PD (BELA-P-k) Pre mean 26.7 (SD 15.6); Post 21.0 (14.7); p < 0.001
Other reported outcomes: Depression (SDS); Mood (VAS)
 Simons, 2006
Same as Macht above but UK sample
[49]
UK
People with PD.
Excluded ‘possible cognitive decline’ based on MMSE≤21.
n = 36
H&Y 1–4
Patient Education Program: “EduPark”
(same as PEPP)
Feasibility (intervention evaluation questionnaire) Range 40–100% average agreement with positive statements and 0–40% average agreement with negative statements. Mod
QoL (PDQ-39) Data not given. No significant differences were found.
Psychosocial impact of PD (BELA-P-k) Data not given. No significant differences were found.
Other reported outcomes: Mood (VAS)
 Sunvisson, 2001 [50]
Sweden
People with PD H&Y stage I-IV, able to walk independently. n = 43
Mean age 75 yrs.
Mean H&Y 1.84
Education programme (information & physical) Mean (SD) pre, post. Mod
UPDRS-II ADL: 9.48 (5.646), post 9.35 (5.524), [difference 0.140] p = 0.7532; 17 weeks post 8.21 (5.655) [difference 1.429] p = 0.0098.
Sickness impact profile (SIP) Pre 11.99 (1.23), post 1.41 (9.52); p = 0.0341
Other reported outcomes: UPDRS-III; Postural Locomotor Manual (PLM) test.
 Jordan, 1993 [51]
Australia
Nursing home residents with communication impairments, subgroup presented for those with PD. Coexisting medical problems not excluded. n = 4;
Mean age 79 yrs.
H&Y not reported
Group communication therapy with self-management strategies Mean (SD), no p values given Mod
Conversation analysis (PCI = Profile of Communicative Interactions) % Attempted ‘repairs’:
Sample 1: pre 89 (11), post 100 (0)
Sample 2: pre 100 (0), post 95 (5)
% successful repairs:
Sample 1: pre 93 (7), post 91.5 (8.5)
Sample 2: pre 97 (3), post 100 (0)
Other reported outcomes: Communication effectiveness (CETI); change of knowledge (custom test)
  1. PD Parkinson’s Disease, ns non-significant, SD standard deviation, SE standard error
  2. * = Experimental & comparator group data pooled for analysis
  3. a = Quasi-randomized: alternate allocation
  4. Glossary for Measures & Scales: ABC Activities-specific Balance Confidence Scale, BBS Berg Balance Scale, BDI Beck Depression Inventory, BELA-P-k Belastungsfragebogen Parkinson kurzversion, BMI Body Mass Index, BMQ Beliefs about Medication Questionnaire, BP Blood Pressure, CDSES Chronic Disease Self-Efficacy Scale, CES-D Centre for Epidemiologic Studies Depression Scale, CETI Communication Effectiveness Index, CPI Community Participation Indicators, ED5D-5 L Euro-QOL, FMI Freiburg Mindfulness Inventory, GSE General Self-Efficacy Scale, H&Y Hoehn & Yahr Stage, HADS Hospital anxiety and depression scale, HAM-A Hamilton Anxiety Rating Scale, HAM-D Hamilton Depression Rating Scale, heiQ Health Education Impact Questionnaire, ISEL The Interpersonal Support Evaluation List, IUS Intolerance of Uncertainty Scale, LiSat-11 11-item Life Satisfaction Checklist, MADRS Montgomery–Åsberg Depression Rating Scale, MCQ-30 Metacognitions Questionnaire, MCS Menta Health Composite Score, MDS-UPDRS Movement Disorders Society - Unified Parkinson’s Disease Rating Scale, MMAS-8 Morisky Medication Adherence Scale, MoCA Montreal Cognitive Assessment, NHP Nottingham Health Profile, NMS-Questionnaire Non-motor Symptom Questionnaire, PADLS PD Activities of Daily Living Scale, PAIS-SR Psychosocial Adjustment to Illness Scale, PASE Physical Activity Scale for the Elderly, PCQ-PD Patient-centred questionnaire for Parkinson’s disease, PDQ-8/39/SI Parkinson’s Disease Questionnaire (short, full & single index), PDQLQ Parkinson’s Disease Quality of Life Questionnaire, PFS-16 16-item Parkinson Fatigue Scale, PSWQ Penn State Worry Questionnaire, S&E Schwab & England, SCOPA-Sleep Scales for Outcomes in Parkinson’s Disease – Sleep, SF-36 Short Form Health Survey, SPERC Stanford Patient Education Research Center, SQLC Scale of Quality of Life of Caregivers, TUG Timed Up & Go Test, UPDRS III/UPDRSm Unified Parkinson’s Disease Rating Scale – motor score, VAS Visual Analogue Scale, VNS Visual Numeric Scale, WTAR Wechsler Test of Adult Reading