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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