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. 2020 Aug 28;9(9):2787. doi: 10.3390/jcm9092787

Table 1.

Quantitative evaluation studies.

Author, Date, Country Program Study Goals Study Design/
Population
Intervention Content Intervention Format Measurement Instruments
(BL/OTH (baseline, others (e.g., possible confounder)), PO (primary outcome), SO (secondary outcome), O (outcome not defined)
Evaluation Timepoints
Outcome,
Evidence Level (AACPDM)
Information Provision Behavioral Modification Physical Exercises
A’Campo et al.,
2009,
Netherlands
EduPark/PEEP
Patient Education Program for Parkinson’s disease
(1) evaluation of effectiveness of PEPP RCT, monocenter
pre/post-test design
additional formative evaluation

intervention group
PwPD (n = 35)
CG (n = 26)

control group
PwPD (n = 29)
CG (n = 20)

comments:
sample size based on feasibility
health promotion,
stress management,
management of anxiety/depression,
role of unrealistic, unhelpful cognitions,
ways of communication
based on behavioral cognitive therapy,
importance of taking active/central role in health care system,
self-monitoring techniques (using a diary for fluctuation of symptoms),
social competence and support
body awareness (breathing, muscular tensions),
relaxation exercises
intervention group
8 wk PEEP
  • 8 interactive group sessions (1 per wk, 90 min, 5–7 participants)

  • active information, exercises, homework, video clips, role plays

  • professional trainers (2-days training workshop)

  • standardized manual (6 languages)

  • CG: simultaneous separate sessions


control group
  • usual neurological care

  • delayed start design: intervention after last observation

quantitative
  • HandY (Hoehn and Yahr Scale), BL/OTH, t0 (PT)

  • MMSE (Mini Mental State Examination), BL/OTH, t0 (PT, CG)

  • ADL (Activities of Daily Living Scale), BL/OTH, t0 (PT)

  • sociodemographic data, BL/OTH, t0 (PT, CG)

  • mood scale (100-point VAS), BL/OTH, t1, (PT, CG)

  • EuroQol-5D, ∆PO (subscales VAS, utility) (CG)

  • SDS (Self-rating Depression Scale), ∆PO, t0, t2

  • BELA-P-k (Belastungsfragebogen Parkinson Kurzversion), ∆PO (“bothered by”, “need for help” score), ∆SO (subscales), t0, t2

  • BELA-A-k (Belastungsfragebogen Parkinson Angehörige Kurzversion), ∆PO (“bothered by”, “need for help” score), ∆SO (subscales), t0, t2

  • PDQ-39 (Parkinson’s Disease Questionnaire-39), ∆PO (SI), ∆SO (subscales) (PT), t0, t2


descriptive
  • evaluation questionnaire, t2


evaluation timepoints
t0 = baseline, 2 wk before PEEP, t1 = before and after each session, t2 = 9 wk after beginning of PEEP
baseline
↓↑ differences between groups
↓ MMSE score (intervention group)

PT
↑ mood scale
↓↑ effects in patient scores
(↓) PDQ-SI in intervention group

CG
↓ BELA-A-k total
↓ BELA-A-k subscores: “achievement capability”, “emotional functioning”, “social functioning”

descriptive
  • helpful exchange of experiences

  • improvement of understanding of PD and deal with problems

  • stress management most valued session


evidence level
I
A’Campo et al.,
2012,
Netherlands
(1) secondary analysis of RCT for potential effect modifiers (A’Campo et al., 2009) linear regression analyses
  • MMSE (PT) predicts BELA-A-k subscore “bothered by” (CG)

  • no modifiers for PT


evidence level
I
A’Campo et al.,
2011
Netherlands
EduPark/PEEP
Patient Education Program for Parkinson’s disease
(1) evaluation for effectiveness of PEEP in daily clinical practice without controlled academic conditions
(2) comparison with previous RCT (A’Campo et al., 2009)
(3) assessment of effectiveness at 6-mth-follow-up
non-randomized controlled design (historical control group),
pre-test/post-test design,
additional formative evaluation

intervention group
PwPD (n = 55)
CG (n = 50)

control group
PwPD (n = 35)
CG (n = 26)

comments:
clinical practice groups compared with RCT groups (A’Campo et al., 2009)
health promotion,
stress management,
management of anxiety/depression,
role of unrealistic, unhelpful cognitions,
ways of communication
based on behavioral cognitive therapy,
importance of taking active/central role in health care system,
self-monitoring techniques (using a diary for fluctuation of symptoms),
social competence and support
body awareness (breathing, muscular tensions),
relaxation exercises
intervention group
8 wk PEEP
  • 8 interactive group sessions (1 per wk, 90 min, 5–7 participants)

  • active information, exercises, homework, video clips, role plays

  • professional trainers (2-days training workshop)

  • standardized manual (6 languages)

  • CG: simultaneous separate sessions


historical control group
  • usual neurological care

  • delayed start design: intervention after last observation

quantitative
  • HandY, BL/OTH, t0 (PT)

  • MMSE, BL/OTH, t0 (PT, CG)

  • ADL, BL/OTH, t0 (PT)

  • sociodemographic data, BL/OTH, t0 (PT, CG)

  • mood scale (100-point VAS), BL/OTH, t1, (PT, CG)

  • PDQ-39, PO, BL/OTH, t0, t2, t3 (PT)

  • BELA-A-k, PO, BL/OTH, t0, t2, t3 (CG)


descriptive
  • evaluation questionnaire, t2, t3


evaluation timepoints
t0 = baseline, t1 = before and after each session, t2 = 9 wks after beginning of PEEP, t3 = 6 mth follow-up
baseline
↑ PDQ-39-SI (intervention group)

drop-outs
↑ PDQ-39-SI
↓ BELA-A-k (subscale: “bothered by”)

short term effects (t2)
↑ mood scale (PT, CG)
↓↑ PT and CG
↓↑ intervention and control group
↓ BELA-A-k
↓ PDQ-39-SI

descriptive
  • better QoL after participation (PT)

  • less psychosocial burden, need for help (CG)


effects 6-mth-follow-up (t3)
↓↑ baseline and follow-up (PT, CG)

descriptive
  • need for follow-up session (45% PT, 70% CG)

  • 70% benefited from PEEP (PT, CG)

  • improvement of communication

  • less use of learned coping strategies


evidence level
IV
Chlond et al.,
2016
Germany
(1) re-evaluate the effectiveness of PEEP among German PwPD
(2) assessment of sustainability of effect
(3) define the time when a booster session is needed to maintain long-term efficacy
RCT, multicenter
pre-test/post-test design

intervention group
PwPD (n = 39)

control group
PwPD (n = 34)

no CG
intervention group
8 wk PEEP
  • 8 interactive group sessions (1 per 2 wks, 90 min, 5–7 participants)

  • active information, exercises, homework, video clips, role plays

  • professional trainers (two-days training workshop)

  • standardized manual (6 languages)


control group
  • usual neurological care

  • delayed start design: Intervention after last observation

  • MMSE, BL/OTH, t0

  • sociodemographic data, BL/OTH, t0

  • PDQ-39, PO, t0, t1, t2

  • Euroqol-5D, SO, t0, t1, t2

  • FKV-LIS-SE (Freiburg Coping with Disease Questionnaire), SO, t0, t1, t2

  • BELA-P-k, SO, t0, t1, t2

  • SOC-29 (Sense of Coherence Scale), SO, t0, t1, t2

  • GSE (General Self-Efficacy Scale), SO, t0, t1, t2

  • HAS-D (German Hospital Anxiety and Depression Scale), SO, t0, t1, t2


evaluation timepoints
t0 = baseline, t1 = right after PEEP, t2 = 3 mth follow-up
baseline
↓↑ differences between groups

after intervention and follow-up (t1,2)
↑ FKV-LIS-SE subscale (active problem-oriented coping)
↓↑ EQ-5D, BELA-P-k, SOC-29, GSE
↓ PDQ-39-SI
↓ PDQ-39 subscales (mobility, stigma, social support, bodily discomfort)

after intervention (t1)
(↑) EQ-5D VAS among intervention group, returned to baseline at follow-up

evidence level
II
Macht et al.,
2007
Germany, Estonia, Finland, Italy, Netherlands, Spain, UK
EduPark/PEEP
Patient Education Program for Parkinson’s disease
(1) patient-related formative evaluation of usefulness, comprehensibility and feasibility
(2) describing measures applicable for a formative evaluation with sample of 7 countries
single group design, multicenter,
pre/post-test design,
formative evaluation

PwPD (n = 150)

no CG
health promotion,
stress management,
management of anxiety/depression,
role of unrealistic, unhelpful cognitions,
ways of communication
based on behavioral cognitive therapy,
importance of taking active/central role in health care system,
self-monitoring techniques (using a diary for fluctuation of symptoms),
social competence and support
body awareness (breathing, muscular tensions),
relaxation exercises
8 wk PEEP
  • 8 interactive group sessions (1 per wk, 90 min, 5–7 participants)

  • active information, exercises, homework, video clips, role plays, handouts, diary sheets

  • trained psychologist (two-days training workshop)

  • standardized manual (6 languages)

quantitative (PO not defined)
  • MMSE, BL/OTH, t0

  • HandY, BL/OTH, t0

  • sociodemographic data, BL/OTH, t0

  • UPDRS part I and II, BL/OTH,

  • mood scale (100-point VAS), BL/OTH, t1

  • activities of daily living scale by Schwab and England, BL/OTH, t1

  • PDQ-39, O, BL/OTH t0, t2

  • BELA-P-k, O, BL/OTH t0, t2

  • SDS, O t0, t2

descriptive
  • evaluation questionnaire (opinion of overall session/program, provided information, learned skills), t1, t2


evaluation timepoints
t0 = baseline, t1 = before/after each session, t2 = after 10 wk
baseline
↓↑ homogenous patient characteristics across countries

post intervention effects (after each session)
↑ mood scale
↓↑ PDQ-39, SDS
↓ BELA-P-k

dDescriptive *
  • intervention was appropriate and fulfilled expectations (67–80%)

  • participants would recommend this program or participate in a similar nature

  • new and helpful information

  • exchange of experiences within the group was helpful

  • improvement of understanding of PD (2/3)


evidence level
IV
Simons et al.,
2006
UK
(1) description program elements
(2) formative evaluation with sample of British participants
(3) suggestion of recommendations for future implementation
single group design,
pre/post-test design,
additional formative evaluation

PwPD (n = 22)

CG (n = 14)
quantitative (PO not defined)
  • MMSE, BL/OTH, t0

  • HandY, BL/OTH, t0

  • sociodemographic data, BL/OTH, t0

  • UPDRS part I and II, BL/OTH, t0

  • activities of daily living scale by Schwab and England, BL/OTH, t0

  • mood scale (100-point VAS), BL/OTH, t1

  • PDQ-39, O, BL/OTH t0, t2, (PT)

  • BELA-P, O, BL/OTH t0, t2, (PT)

  • BELA-A, O, BL/OTH, t0, t2 (CG)

  • EuroQol-5D, O, t0, t2 (CG)

  • SDS, O t0, t2 (PT, CG)


descriptive
  • evaluation questionnaire (opinion of overall session/program, provided information, learned skills), t1, t2


evaluation timepoints
t0 = baseline, t1 = before/after each session, t2 = after 10 wk
post intervention effects (after each sessions)
↑ mood scale (except of 2 sessions) (PT, CG)
↓↑ PDQ-39, BELA-P (PT)
↓↑ EuroQol-5D, BELA-A (CG)
(↓) subscales BELA-P (PT)

dDescriptive *
  • participants received helpful information (agreement 50–100%)

  • exchange of experiences within the group was helpful (agreement 72–100%)

  • improvement ability to handle problems related to PD (agreement 78%)

  • most useful session: stress management (50%)


evidence level
IV
Tiihonen et al.,
2008
Finland
EduPark/PEEP
Patient Education Program for Parkinson’s disease
(1) evaluation of effectiveness and applicability of PEEP in Finland non-randomized controlled design
pre/post-test design
2 centers

intervention group
PwPD (n = 29)
HandY = 1–3
location: Turku

control group
PwPD (n = 23)
HandY = 1–3
location: Helsinki

no CG
health promotion,
stress management,
management of anxiety/depression,
role of unrealistic, unhelpful cognitions,
ways of communication
based on behavioral cognitive therapy,
importance of taking active/central role in health care system,
self-monitoring techniques (using a diary for fluctuation of symptoms),
social competence and support
body awareness (breathing, muscular tensions),
relaxation exercises
intervention group
8 wk PEEP
  • 8 interactive group sessions (1 per wk, 90 min, 5–7 participants)

  • active information, exercises, homework, video clips, role plays, handouts, diary sheets

  • trained psychologist (two-days training workshop)

  • standardized manual (6 languages)


control group
  • standard care

quantitative (PO not defined)
  • MMSE, BL/OTH, t0

  • HandY, BL/OTH, t0

  • sociodemographic data, BL/OTH, t0

  • mood scale (100-point VAS), BL/OTH, t1

  • PDQ-39, O, BL/OTH t0, t2

  • BELA-P-k, O, BL/OTH t0, t2

  • ADL scale of UPDRS, O, BL/OTH, t0, t2

  • SDS, O t0, t2

descriptive
  • evaluation questionnaire


evaluation timepoints
t0 = baseline, t1 = before and after each session, t2 = after 10 wks
baseline
↑ longer disease duration in control group

post intervention effects (after each session)
↑ mood scale
↓↑ SDS

without covariate adjustment:
↓↑ ADL scale
↓↑ BELA-P-k
↓↑ PDQ-39-SI (intervention group)
↑ PDQ-39-SI (control group)

with covariate adjustment (years since diagnosis):
↓ PDQ-39 subscale (“Social support”)

evidence level
III
Tickle-Degnen et al.,
2010
USA
self-management rehabilitation (1) determine if self-management rehabilitation promoted HRQOL beyond best medical therapy
(2) does more intense individualized rehabilitation increase effectiveness
(3) persistence of outcomes at 2- and 6-months follow-up
(4) Are rehabilitation-targeted domains (mobility, communication, activities of daily living) more responsive to intervention than non-targeted areas (emotions, stigma, social support, cognitive ability)?
RCT,
monocenter

intervention group
18 hrs rehabilitation
PwPD (n = 37),
HandY = 2–3

27 hrs rehabilitation
PwPD (n = 39),
HandY = 2–3

control group
0 hrs rehabilitation
PwPD (n = 41),
HandY = 2–3

no CG

comments:
power >0.80 (difference between rehabilitation and no rehabilitation)
no PD-specific content assessing problems in personally valued domains of mobility,
communication and daily life activities,
observe behavior,
identify strengths and problems in mobility,
communication and activities of daily living,
goal setting and implementation of action plans
physical and speech exercises,
functional training
intervention group
6 wks of self-management rehabilitation
  • (1) 18 hrs clinic group sessions (2 per wk, 1.5 h, 4 participants) and student-facilitated social group session in the clinic OR

  • (2) 27 h clinic group sessions (2 per wk, 1.5 h, 4 participants) and a transfer-of-training session at home (1 per wk, 1.5 h)

  • trained, supervised interdisciplinary team of physical, occupational therapists and speech therapists

  • standardized and manualized

  • handouts with photographs of exercise routine


control group
  • handouts with photographs of exercise routine

  • MMSE, BL/OTH, t0

  • HandY, BL/OTH, t0

  • GDS (Geriatric Depression Scale), BL/OTH, t0

  • PDQ-39, PO, BL/OTH, t0, t1, t2, t3


evaluation timepoints
t0 = baseline, t1 = post intervention, 6 wks, t2 = 2-month-follow-up, t3 = 6-month-follow-up
baseline
↓↑ differences between groups
↑ PDQ-39 social support (0 hrs rehabilitation)

comparison rehabilitation vs. no rehabilitation
↓ PDQ-39-SI (reduction of problems)
↓ PDQ-39 subscales (communication, mobility, activities of daily living)
↓strongest effect PDQ-39 subscale communication (2-month follow-up)
↓ strongest effect PDQ-39 subscale mobility (6-month follow-up)
↓↑ no differences in PDQ-39 between 18 h and 27 h intensities

evidence level
I
Guo et al.,
2009
China
personal rehabilitation program (1) development of a program with group education and personal rehabilitation focusing on HR-QOL improvement
(2) empower people with PD to deal with disease-related challenges
RCT, single-blind, pre/post-test design, quasi-experimental, monocenter

intervention group
PwPD (n = 23),
HandY = 1–3

control group
PwPD (n = 21),
HandY = 1–3

no CG
specific nutrition,
antidepressant and anxiolytic medications,
psychotherapy
management of daily disease-impacted problems physical and tailored occupational therapy (e.g., balance training, active music therapy),
practical exercise at home
intervention group
8 wks personal rehabilitation program
  • 3 interactive group sessions (45 min)

  • 24 personal rehabilitation sessions (30 min)

  • multidisciplinary team (occupational therapist, physiotherapist psychologist, nurse, neurologist, dietitian)

  • additional information on a website


control group
standard care, one session after end of observation period
  • MMSE, BL/OTH, t0

  • HandY, BL/OTH, t0

  • sociodemographic data, BL/OTH, t0

  • PDQ–39, PO, BL/OTH, t0, t1, t2

  • UPDRS part II, III, SO, BL/OTH, t0, t2

  • SEADL (Schwab and England ADL scale), SO, BL/OTH, t0, t2

  • SDS (Zung Self-Rating Depression Scale), SO, BL/OTH, t0, t2

  • PMS (Global patient’s mood status) SO, BL/OTH, t0, t2

  • CMS (Caregiver mood status), SO, BL/OTH, t0, t2


evaluation timepoints
t0 = baseline, t1 = after 4 wks, t2 = after intervention (8 wks)
baseline
↓↑ differences between groups

after 4 wks
↓ PDQ-39 subscale bodily discomfort

after 8 wks
↑ PMS
↓↑ SEADL
↓↑ SDS
↓ PDQ-39-SI
↓ UPDRS part II and III

evidence level
II
Sajatovic et al.,
2017
USA
EXCEED (exercise therapy for PD + CDSM group program) (1) compare an individual versus group exercise plus CDSM program
(2) acceptance and adherence of these programs
(3) alteration of depression and factors of neural health and inflammation after these interventions
prospective RCT, monocenter
additional formative evaluation

EXCEED intervention
PwPD + comorbid depression (n = 15),
HandY = 1–3
MADRS ≥ 14

SGE intervention
PwPD + comorbid depression (n = 15),
HandY = 1–3
MADRS ≥ 14

no CG

comments:
power >0.80 (MARDS)
CDSM information,
PD-specific content (not further described)
based on self-management approach,
problem identification and goal setting
fast-paced, low-resistance cycling (20 min),
strength training (20 min),
progressive sequence of resistance bands
12 wks EXCEED
  • CDSM group intervention (1 per wk, 1 h, 7–8 participants)

  • nurse and trained peer educator with PD-Dep

  • manualized sessions

  • 3 times/week small group exercises with certified personal trainer

  • detailed instruction manual

  • after 12 wks participants continued to exercise on their own

quantitative (O defined as exploratory outcome))
  • MMSE, BL/OTH, t0

  • HandY, BL/OTH, t0

  • sociodemographic data, BL/OTH, t0

  • CCI (Charlson Comorbidity Index), BL/OTH, t0

  • MADRS (Montgomery-Asberg Depression Rating Scale), BL/OTH, ∆PO, t0, t1, t2

  • MoCA (Montreal Cognitive Assessment), BL/OTH, ∆SO, t0, t1, t2

  • Apathy Scale, BL/OTH, ∆SO, t0, t1, t2

  • Covi Anxiety Scale, BL/OTH, ∆SO, t0, t1, t2

  • GSE (General Self-Efficacy Scale), BL/OTH, ∆SO, t0, t1, t2

  • MDS-UPDRS-III, BL/OTH, ∆SO, t0, t1, t2

  • SCOPA-sleep (Scales for Outcomes in PD – Sleep), BL/OTH, ∆SO, t0, t1, t2

  • marker of neuroprotection (BDNF, TNF-alpha, IL-6), BL/OTH, ∆O, t0, t1, t2


descriptive
  • custom survey (satisfaction, usefulness, comprehensiveness, perceived burden, relevance of assigned intervention, timing, length, number of sessions)


evaluation timepoints:
t0 = baseline, t1 = after 12 wks, t2 = after 24 wks
baseline
(↑) longer duration, higher doses, more extensive medical comorbidity (EXCEED)
↓↑ differences between the groups
↓ education, L-Dopa-dosage (SGE)

combined group effects
↑ SCOPA-sleep (24 wks)
↑ MoCA (24 wks)
↑ BDNF (12 wks, 24 wks)
↓↑ Apathy scale, Covi Anxiety Scale, GSE, MDS-UPDRS-III
↓ MADRS (12 wks, 24 wks)

descriptive *
  • participation in program is useful (100% EXEED, 84.6% SGE)

  • satisfaction with social aspects of group attendance (EXCCED)

  • easy to fit exercise into their lives (SGE)

  • fixed-time groups were difficult (EXCEED)


evidence level
II
SGE (self-guided CDSM program + exercise) 12 wks SGE
  • self-guided, same CDSM information like EXEED (written material)

  • participants read and practice it on their own

  • single initial in-patient group orientation

  • exercise program exercises (3 per wk) with written instructions

  • phone calls to self-report (1 per wk, first 12 wks)

Hellqvist et al.,
2020
Sweden
NPS (National Parkinson School) (1) outcomes of the NPS from the perspective of the participants using self- reported questionnaires case-control study, quasi-experimental
clinical practice, monocenter,
additional formative evaluation

intervention group
PwPD (n = 70)
CG (n = 41)

control group
PwPD (n = 62)
CG (n = 34)

comments:
age and gender matched control group,
power >0.80 (PDQ-8), twice sample size
need of disease related knowledge to understand how it affect the daily life,
stress management,
communication,
anxiety and depression,
self-monitoring,
enriching activities,
future life with PD
self-management and self-monitoring as central concepts,
knowledge and tools to enhance ability to live and handle life with disease,
awareness about thoughts and reactions,
replace negative thoughts with constructive thoughts helps manage difficulties
relaxation exercises (15 min, end of a session) intervention group
7 wk NPS
  • interactive group sessions (1 per wk, 2 h)

  • introduction of a specific topic to give more knowledge, group discussion, practical exercises, relaxation exercises and homework

  • qualified trainers (health care professionals)

  • CG: common session with PT


control group
standard care
  • HandY, BL/OTH, t0

  • PADLS (PD Activities of daily living scale), BL/OTH, t0 (PT)

  • sociodemographic data, BL/OTH, t0

  • PDQ-8 (Parkinson’s Disease Questionnaire-8) (PT)

  • Euroqol-5D (PT, CG)

  • ZBI (Zarit Burden Index) (CG)

  • LitSat-11 (Life satisfaction Checklist), (PT, CG)

  • PSF-16 (Parkinson Fatigue Scale) (PT)

  • item 1 of RAND-36-questionnaire (PT, CG)

    heiQ (Health Education Impact Questionnaire) for program evaluation (PT, CG)


evaluation timepoints:
t0 = baseline, t1 = after 7 wk
baseline
↑ male participants (intervention group)
↓↑ difference between groups

PT (intervention group)
↑ EuroQol-5D
↑ heiQ subscales (“constructive attitudes and approaches”, “skill and technique acquisition”)
↓ PDQ-8

PT (control group)
↓ LitSat-11 subscales (“satisfaction with life as a whole”, “leisure”, “contacts”)

CG
(↑) improvement of all scores after program
↓↑ difference between groups
↓ LiSat-11 subscale (“satisfaction with life as a whole”)

heiQ
↑ relevant content, understanding of PD
(↑) CG find NPS more helpful than PT in terms of goal setting
self-reported confounding factors * (health problems, deaths in family, birth grandchildren)

evidence level
III
Lindskov et al.,
2007
Sweden
multi-disciplinary group educational program with caregiver (1) evaluate patient-reported health outcomes of a multi-disciplinary group educational program as part of routine clinical practice naturalistic non-randomized controlled trial, monocenter
waiting list

intervention group
PwPD (n = 49)

control group
PwPD (n = 48)

with CG

comments:
power > 0.80 (standard error, SF-12)
general information (e.g., symptoms, disease progression),
medical and surgical treatment,
nutrition,
oral hygiene,
availability of funds, applying for funds, social support
managing day-to-day disease-related problems,
focusing on possibilities rather than limitations,
coping strategies
relaxation,
speech and movement exercises
intervention group
6 wk multidisciplinary group educational program
  • group sessions (1 per wk, 2 h, 6–8 participants)

  • lecture, interactive discussion, exercises

  • multidisciplinary team (nurse, physician, occupational therapist, dietician, psychologist, speech therapist, dental hygienist, social worker)

  • CG: 1st, 2nd hour separate


control group
delayed intervention after follow-up
  • HandY, BL/OTH, t0

  • sociodemographic data, BL/OTH, t0

  • SF-12 (12 item short-form health survey), BL/OTH, PO, t0, t1


evaluation timepoints:
t0 = baseline, t1 = after 10 wk
baseline
↓↑ difference between groups

post intervention
↑ L-Dopa-dose (control group)
↓↑ SF-12

evidence level
III
Lyons et al.,
2020
USA
Strive to thrive: Self-Management for Parkinson’s Disease (1) exploration of health benefits, self-management behaviors, illness communication for couples participating together in an existing community-based self-management workshop for PD case-control study, quasi-experimental’, multicenter,
waiting-list design

intervention group
PwPD + CG (couples, n = 19)

control group
PwPD + CG (couples, n = 20)
PD-specific content not further described,
depression,
sleep problems
self-management skills like monitoring, taking action, problem-solving, decision-making and evaluating results exercises (not further described),
relaxation techniques
intervention group
7 wk Strive to Thrive
  • 6 wk according to CDSMP (Chronic Disease Self-Management Program)

  • adding 1 wk with pd-specific content

  • group intervention

  • peer trainees trained by co-principal investigator (master trainer, 4 day training session Stanford University)

  • Stanford Self-Management Program Fidelity Manual


control group
wait list/delayed intervention
  • sociodemographic data, BL/OTH, t0 (PT, CG)

  • SF-36 (36 item short-form health survey), ∆PO, t0, t1 (PT, CG)

  • CES-D (Center for Epidemiologic Studies-Depression scale), ∆PO, t0, t1, (PT, CG)

  • MCSI (multidimensional Caregiver Strain Index), ∆PO, t0, t1 (CG)

  • evaluation questionnaire CDSMP-Curriculum (self-management, self-efficacy), ∆PO, t0, t1, (PT, CG)

  • active engagement und protective buffering (VAS Scale), ∆PO, t0, t1, (PT, CG)


evaluation timepoints:
t0 = baseline, t1 = after 7 wk
baseline
↓↑ differences between groups
↓ aerobic activity, physical health (intervention group (PT))

PT
(↑) aerobic activity
(↑) mental relaxation
(↑) self-management behaviors
(↓) physical health
(↓) engage in less protective buffering
(↓) self-efficacy to manage PD

CG
↑ improvement in engagement in mental relaxation techniques
(↑) care strain
(↑) engagement in strength-based activities
(↑) self-efficacy to support partners in managing PD
↓↑ physical health
↓↑ aerobic activity
(↑) self-management behaviors
(↓) depressive symptoms
(↓) engage in less protective buffering

evidence level
III
Gruber et al.,
2008
Canada
EMP
(The Early Management Program)
differences between 2 locations:
(1) program evaluation
(2) participants characteristics
(3) attendance and non-completion rates
(4) immediate benefits in terms of self-reported and physical outcomes
pre/post-test design,
summative evaluation,
2 centers study

Baycrest group
PwPD (n = 40)
HandY = 1–2
< 3 y disease duration
location: Toronto

CMID group
PwPD (n = 52)
HandY = 1–2
< 3 y disease duration
location: Markham

no CG
medication, pain, sleep,
being an informed healthcare consumer,
relationships (loving and caring),
mind, emotions and behavior,
participation in aerobic activities
programs based on self-management approach,
aim to optimize ability to live well with PD,
personal goal setting,
coping with change and PD
Axial Mobility Program: exercises for flexibility, strength, posture, balance,
relaxation techniques,
walking, speech and swallowing
8 wk EMP
  • group intervention (1 per 2 wk, 2 h)

  • 1st hour interactive discussions

  • 2nd hour exercises

  • short-term goals (every 2 wk)

  • long term goal (completion by end of program)

  • provided by a physiotherapist and a trained volunteer facilitator

(PO not defined)
  • UPDRS part I, III, BL/OTH, t0

  • HandY, BL/OTH, t0

  • AI (Activity Inventory of the Chedoke McMaster), BL/OTH, t0

  • BBS (Berg Balance Scale), BL/OTH, t0

  • sociodemographic data, BL/OTH, t0

  • CISM (chronical illness self-management questionnaire), ∆O, t0, t1

  • FR (functional reach), ∆O, t0, t1

  • timed functional movements, walking speed, ∆O, t0, t1

  • FAR (functional axial rotation), ∆O, t0, t1


evaluation timepoints:
t0 = 2 wks prior to beginning of EMP, t1 = after 8 wk (last session)
baseline
↑ age (CMID)
↑ month since diagnosis (CMID)
↑ UPDRS part I (CMID)

post intervention
↑ CISM subscales (stretching, cognitive symptom management, mental stress management communication with physician)
↑ FAR (only Baycrest)
↑ FR
↑ timed functional movements, walking speed
(↑) CISM aerobic subscale

evidence level
IV
Horne et al.,
2019
Australia
Parkinson’s disease Wellbeing Program (1) short-term improvements in psychosocial and physical parameters and sustainability at 12-mth follow-up
(2) influence of older patient age, lower MMSE, higher HandY stage and disease duration on baseline parameters and physical improvement at 12 months
(3) association of baseline patient characteristics and history of falls
(4) relationship between baseline characteristics, exercises, 12-mth balance and psychosocial parameters
prospective observational study,
single center

PwPD (n = 135),
HandY 1–3

no CG
importance of exercise,
nutrition and medication,
communication, speech and swallowing,
sleep and fatigue,
falls, freezing and posture,
stress management and independent living
motivation to exercise daily, not explicit mentioned
dual tasking,
extension, rotation, reaching, stepping, symmetrical gait,
cardiovascular warm-up, stretching
5 wk Wellbeing Program
  • group sessions (2 per wk, 2.5 h, 6 participants)

  • education (1 h)

  • exercises (1 h 10 min), adapted to individual needs and preferences

  • general discussion (20 min)

  • clinic physiotherapist, exercises physiotherapist

  • handouts

  • home exercise program with written explanations and daily exercise diary

  • exercise guidelines

(PO not defined)
  • MMSE, BL/OTH, t0

  • HandY, BL/OTH, t0

  • sociodemographic data, BL/OTH, t0


physical measures
  • fast gait velocity over 10 m, O, t0, t1, t2

  • 2 MW (distance walked in 2 min), O, t0, t1, t2

  • TUG, (timed up and go), O, t0, t1, t2

  • STS (number of Sit to stand in 30 s), O, t0, t1, t2

  • BBS (Berg Balance Score), O, t0, t1, t2

psychosocial measures
  • PDQ-39, O, t0, t1, t2

  • DASS-21 (Depression Anxiety Stress Score), O, t0, t1, t2

  • PSF-16, O, t0, t1, t2


evaluation timepoints:
t0 = baseline, t1 = after intervention (6 wk), t2 = 12-month-follow-up (17 wk)
after 6 wks
↑ physical measures (2 MW, STS, TUG, gait velocity and BBS)
↑ DASS-21
↓ PDQ-39
↓ PFS-16

after 12 mths
↑ physical measures (2 MW, STS, TUG, gait velocity and BBS)
↓↑ DASS-21
↓↑ PDQ-39
↓↑ PFS-16

regression analysis
  • worse physical parameters at baseline associated with older age, lower MMSE, higher HandY

  • worse psychosocial parameters at baseline associated with lower MMSE, higher HandY

  • improvement in physical parameters (12 wk) predicted by MMSE, HandY, PFS-16, patient age


evidence level
IV
Sunvisson et al.,
2001
Sweden
Multi-disciplinary group educational program (1) Evaluation of a training program for PwPD
(2) influence on psychosocial situation, ability to handle daily life activities and mobility pattern
single group design, monocenter
pre/post-test design

PwPD (n = 45)
HandY ≤ 4

no CG
physical/psychological symptoms,
dialectical liaison between body and mind,
medical treatments and side-effects,
influences from physical surroundings and social networks
based on structure of connection model (interaction between person and environment),
manage sickness-related difficulties in daily life by exploring limitations and possibilities,
how to obtain and maintain good self-care
coordination,
balance,
body rhythm,
stretching,
relaxation and body language,
practical advice: rise from chair, turn around in and get out of bed
5 wk multidisciplinary group education program
  • interactive group sessions (2 per wk, 2 h)

  • 1 h dialogue and 1 h physical exercises

  • provided by nurse and physiotherapist

  • tasks at home, handout

  • PLM (postural-locomotor-manual), BL/OTH, ∆PO, t0, t1, t2

  • HandY, BL/OTH, ∆SO, t0, t1, t2

  • UPDRS (ADL, motor examination), BL/OTH, ∆SO, t0, t1, t2

  • SIP (sickness impact profile), BL/OTH, ∆SO, t0, t2


evaluation timepoints:
t0 = baseline, t1 = after intervention (5 wk), t2 = 3-month-follow-up (17 wks)
↑ PLM subscales movement time, simultaneous index/level of integrated movements
↑ improvement SIP and SIP subscales psychosocial dysfunction, sleep and rest (baseline + 17 wk)
↓↑ UPDRS subscale motor examination
↓ UPDRS subscale ADL (baseline+ 5 wks, 5 wks + 17 wks)

evidence level
IV
Chaplin et al.,
2012
UK
Hertfordshire Neurological Services Self-Management Program (1) description of program development
(2) discussion of implications for service providers and future research
program development and concept
process evaluation


persons with long-term neurological conditions (n = 60)

CG na
symptoms,
medication,
psychological aspects,
communication,
nutrition,
advice for speech and swallowing difficulties,
strategies or enhancing function and mobility-circuits
based on main theoretical approaches to self-management (social cognitive theory and self-regulation model),
personal health plans,
self-management concept and support tools,
strategies for daily life and coping
exercise examples and physiotherapy condition-specific self-management groups at Hertfordshire neurological service
  • 3 modules (self-management, living well, disease-specific (PD))

  • group discussion, handouts

  • multidisciplinary team (nurse, psychologists, physiotherapists, occupational therapists, dieticians, rehabilitation assistants)

  • number of wk and participants, length of sessions not further described

  • CG: only first module combined with PT

  • evaluation questionnaire, t1


evaluation timepoint:
t1 = after intervention
  • most helpful outcome: discussions/other people’s experiences (>50%)

  • high level of satisfaction

  • need of inclusion of CG (25%)


evidence level
V
van Nimwegen et al.,
2010/2013
Netherlands #
ParkFit Program (1) development of a multifaceted intervention to promote physical activity in sedentary PwPD
(2) investigation whether this program affords increased physical activity levels that persist for two years
(3) search for possible health benefits and risks of increased physical activity
RCT,
multicentre

intervention group
PwPD (n = 299)
HandY ≤ 3

control group
PwPD (n = 287)
HandY ≤ 3

no CG

comments:
32 participating hospitals,
Power 0.80
general information about PD
benefits of physical activity
behavioural change strategies like identifying and overcoming any perceived barriers to engage in physical activity
combination of techniques based on models of behavioural change
identify individual beliefs
goal setting,
recruiting social support
physical therapy intervention group
2 y ParkFit
  • max. 19 (1st year)/23 (2nd year) physical therapy sessions a year (30 min)

  • max 16 (1st year)/12 (2nd year) coaching sessions a year

  • experienced trained physical therapists of Dutch ParkinsonNet (attention to techniques of behavioural change strategies)

  • brochure with specific behavioural change strategies

  • workbook with health contract (physiotherapist and PT)

  • logbook (monitoring of 6-month-goals)

  • activity monitor with visual feedback (triaxial accelerometer)

  • personalized website shows the activity history

  • education, employment, lifetime physical activity, BL/OTH, t0

  • attitude, social support, self-efficacy towards physical activity, BL/OTH, t0 (only ParkFit)

  • blood pressure, height, body weight, BL/OTH, t0, t4, t6

  • alcohol use, smoking, BL/OTH, t0, t4, t6

  • LAPAQ (LASA physical activity questionnaire), PO, t0, t3, t4, t5, t6

  • 6 MWT (six minute walk test), SO, t0, t4, t6

  • level of physical activity (time, kilocalories), SO, t1

  • PDQ-39, SO, t0, t3, t4, t5, t6

  • UPDRS III, O, t0, t4, t6

  • Nine hole peg board test, O, t0, t4, t6

  • TUG, O, t0, t4, t6

  • SCOPA-sleep, O, t0, t3, t4, t5, t6

  • HAD-S, O, t0, t3, t4, t5, t6

  • FSS (Fatigue Severity Scale), O, t0, t3, t4, t5, t6

  • cognitive functioning tests, O, t0, t4, t6

  • Åstrand-Ryhming test, O, t0, t2, t4

  • DXA (dual energy X-ray absorptiometry), O, t0, (subgroup of 300 PT)

  • PD medication, O, t0, t3, t4, t5, t6

  • medical costs and EuroQol-5D, O, t0, t3, t4, t5, t6

  • number of falls, O, t0, t2, t3, t4, t5, t6


evaluation timepoints:
t0 = baseline, t1 = per week, t2 = monthly, t3 = after 6 mths, t4 = after 12 mths, t5 = after 18 mths, t6 = after 24 mths
6 to 24 mth (change)
↑ level of physical activity
↓↑ LAPAQ
↓↑ PDQ-39
↓↑ number of falls
(↓) 6 MWT

evidence level
I
ParkSafe Program general information about PD
aims and benefits of physical therapy
importance of safety on daily activities
not included interventions from physical therapy guidelines for PD to move more safely
improving quality of transfers
control group
2 y ParkSafe
  • max. 35 sessions a year (30 min)

  • individualized physical therapy program

  • experienced physical therapists of Dutch ParkinsonNet

  • brochure (benefits of physical therapy)

bi-annual newsletter

Table shows self-management education (SME) programs with quantitative evaluation studies. Changes in outcomes are indicated as follows: ↑ significant increase, ↓ significant decrease, (↑) trending increase, (↓) trending decrease, ↓↑ no change, na not applicable. * summarized for space restrictions, # This study was not identified by the search terms of the current systematic review, because of the usage of the term “behavioral program” instead of “self-management”. Despite this, the study was still reported because of its relevance to the overarching theme of the review. Abbreviations: AACPDM American Academy for Cerebral Palsy and Developmental Medicine, RCT randomized controlled trial, MKP multimodal complex treatment, QOL quality of life, HRQOL health-related quality of life, PwPD patients with Parkinson’s disease, PD Parkinson’s disease, n number, y years, wk week(s), mth month, h hours, min minutes, s seconds, t time, PO primary outcome, SO secondary outcome, PL/OTH baseline/others, PT patients, CG caregiver, PEEP Patient Education Program for PD, HandY Hoehn and Yahr Scale, MMSE Mini Mental State Examination, ADL Activities of Daily Living Scale, VAS visual analogue scale, SDS Self-rating Depression Scale, BELA-P-k Belastungsfragebogen Parkinson Kurzversion, BELA-A-k Belastungsfragebogen Parkinson Angehörige Kurzversion, UPDRS Unified Parkinson’s Disease Rating Scale, PDQ-39 Parkinson’s Disease Questionnaire-39, PDQ-SI Parkinson’s Disease Questionnaire-Summary Index, FKV-LIS-SE Freiburg Coping with Disease Questionnaire, SOC-29 Sense of Coherence Scale, GSE General Self-Efficacy Scale, HAS-D German Hospital Anxiety and Depression Scale, GDS Geriatric Depression Scale, SEADL Schwab and England ADL scale, SDS Zung Self-Rating Depression Scale, PMS Global patient’s mood status, CMS Caregiver mood status, EXCEED exercise therapy for PD, CDSM chronic disease self-management, CCI Charlson Comorbidity Index, MARDS Montgomery-Asberg Depression Rating Scale, MoCa Montreal Cognitive Assessment, GSE General Self-Efficacy Scale, SCOPA-sleep Scales for Outcomes in PD–Sleep, CMID Centre for Movement Disorders in Markham, SGE self-guided CDSM program + exercise, SF-12 12 item short-form health survey, EMP The Early Management Program, AI Activity Inventory of the Chedoke McMaster, BBS Berg Balance Scale, CISM chronical illness self-management questionnaire, FR functional reach, FAR functional axial rotation, PADLS PD Activities of daily living scale, PDQ-8 Parkinson’s Disease Questionnaire-8, ZBI Zarit Burden Index, LitSat-11 Life satisfaction Checklist, PSF-16 Parkinson Fatigue Scale, heiQ Health Education Impact Questionnaire, NPS National Parkinson School, SF-36 36 item short-form health survey, CES-D Center for Epidemiologic Studies-Depression scale, MCSI multidimensional Caregiver Strain Index, 2 MW distance walked in 2 min, TUG timed up and go, STS number of Sit to stand in 30 s, BBS Berg Balance Score, DASS-21 Depression Anxiety Stress Score, SIP sickness impact profile, PLM postural-locomotor-manual, LAPAQ LASA physical activity questionnaire, 6 MWT six-minute walk test, FSS Fatigue Severity Scale, DXA dual energy X-ray absorptiometry).