Table 1.
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
control group
|
quantitative
descriptive
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
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
evidence level I |
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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
historical control group
|
quantitative
descriptive
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
effects 6-mth-follow-up (t3) ↓↑ baseline and follow-up (PT, CG) descriptive
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
control group
|
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
|
quantitative (PO not defined)
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 *
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)
descriptive
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 *
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
control group
|
quantitative (PO not defined)
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
control group
|
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
control group standard care, one session after end of observation period |
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
|
quantitative (O defined as exploratory outcome))
descriptive
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 *
evidence level II |
SGE (self-guided CDSM program + exercise) | 12 wks SGE
|
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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
control group standard care |
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
control group delayed intervention after follow-up |
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
control group wait list/delayed intervention |
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
|
(PO not defined)
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
|
(PO not defined)
physical measures
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
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
|
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
|
evaluation timepoint: t1 = after intervention |
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
|
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
|
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).