Rehabilitation Dataset Directory: Dataset Profile

The Emergence and Evolution of Social Self-Management of Parkinson's Disease study (SocM-PD) is a mixed-method (quantitative-qualitative) prospective cohort study of how people with Parkinson's disease and their primary caregiver (as available) naturalistically manage chronic disease, wellness and social life in their home and community.

This longitudinal study is focused on social self-management. Social self-management is defined as the practices and experiences that ensure personal social comfort while supporting mental and physical well-being. Parkinson's Disease offers a model for studying the effect of physical disease on the social self-management of daily life when physical symptoms affect fundamental social capacities. The study's objective is to understand the emergence and evolution of the trajectories of the self-management of the social lives of people living with Parkinson's disease. The central hypothesis is that expressive capacity predicts systematic change in the pattern of social self-management and quality of life outcomes.

The specific aims of the study are to: 1) characterize social self-management trajectories over the 3 year period; 2) estimate the degree to which expressive nonverbal capacity predicts the trajectory; and 3) determine the moderating effect of gender on the association between expressive capacity and change in social self-management.

Mixed methods, Cohort, Chronic disease, Chronic disease management, Social life, Social contact, Social interactions, Social self-management, Social networks, Quality of life,  Expressive capacity, Caregivers, Health behavior, Health care

Department of Health and Human Services (HHS),

National Institutes of Health (NIH)

Parkinson's disease (PD), Depression (Geriatric Depression Scale), 

Functional limitations (ADLs and/or IADLs), Communication impairment, Cognitive disability- Montreal Cognitive Assessment (MoCA), Caregiver assistance need

Study measures included the following components of the International Classification of Functioning, Disability and Health: Activities and participation, Body function, and Environment. 

Employment, Income, Education, Employment, Social support, Social interaction, Social isolation, Social participation, Management of social activities; Social networks, Social comfort, Health, Well-being, Caregiving, Expressive nonverbal capacity, Medication

Persons with Parkinson's disease and their care partners in the Greater Boston Metropolitan Area and New England, United States.

139 participants total 

(Includes 86 Persons with Parkinson's disease and 53 of their participating caregivers)

Individual/Patient and caregivers

North America

United States

New England states: Vermont, Massachusetts, Maine, Connecticut New Hampshire

NA 

Clinical observations and surveys

2013-19

Baseline with seven in-person assessments occurring approximately every 6 months. An additional telephone call was made between the assessments.

Well constructed study containing a wide variety of data collected consistently including detailed assessments, health events, and life events history. Low participant attrition over time. 

Researchers can analyze public use data online:

https://www.icpsr.umich.edu/web/ADDEP/studies/37631/datadocumentation# 

Includes the following scales:

• Montreal Cognitive Assessment (MoCA)
• Geriatric Depression Scale (GDS)
  
• Activity Card Sort (ACS)
  
• Chronic Illness Resource Survey (modified) (CIRS)
  
• Social Isolation domain, Nottingham Health Profile (NHP)
  
• Positive Social Interaction items, Medical Outcome Study: Social Support Survey (MOS)
  
• Stigma Scale for Chronic Illness (SSCI)
  
• Short Form (version 2) Health Survey (SF-12v2)
  
• Parkinson's Disease Questionnaire (PDQ-39)
  
• 8 item form of Parkinson's Disease Questionnaire-39 (PDQ-8)
  
• Movement Disorder Society--Unified Parkinson's Disease Rating Scales (MDS-UPDRS)
  
• Positive Social Interaction subscale items of the Medical Outcomes Study

Qualitative data are not available as part of data collection at this time

Not all caregivers participated. 

https://www.icpsr.umich.edu/web/ADDEP/studies/37631/summary 

Both public use and a restricted use datasets are available.

• Public use data access requires completion of ICPSR agreement form.
• To obtain the restricted file, researchers must agree to the terms and conditions of a Restricted Data Use Agreement in accordance with existing ICPSR servicing policies.
  

Variables interface provides basic frequencies:       https://www.icpsr.umich.edu/web/ADDEP/studies/37631/variables 

Online analysis available based on public use data:

    https://www.icpsr.umich.edu/web/ADDEP/studies/37631/datadocumentation# 

15 datasets altogether, each available in two versions: a public use dataset and a restricted dataset

• Screen and Baseline Assessment 
• Telephone 1 Assessment 
• Telephone 2 Assessment 
• Telephone 3 Assessment 
• Home Visit Assessment 
• Telephone 4 Assessment 
• Telephone 5 Assessment 
• Telephone 6 Assessment 
• Telephone 7 Assessment 
• Alternative Assessment 
• Two and a Half Year Assessment 
• Six Month Assessment 
• One Year Assessment 
• Two Year Assessment
• Three Year Assessment 

Emergence and evolution of social self-management of Parkinson’s disease: study protocol for a 3-year prospective cohort study

https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-14-95 

Profile of social self-management practices in daily life with Parkinson's disease is associated with symptom severity and health quality of life. Disabil Rehabil. 2020 Apr 1:1-13. doi: 10.1080/09638288.2020.1741035

 https://pubmed.ncbi.nlm.nih.gov/32233702/

Codebooks and questionnaires available here:

https://www.icpsr.umich.edu/web/ADDEP/studies/37631/datadocumentation# 

• AphasiaBank