Emergence and Evolution of Social Self-management of Parkinson's Disease, Greater Boston Metropolitan Area, 5 states, 2013-2019 (ICPSR 37631)

Version Date: Feb 10, 2022 View help for published

Principal Investigator(s): View help for Principal Investigator(s)
Sarah D. Gunnery, New England College; Linda Tickle-Degnen, Tufts University


Version V3 ()

  • V3 [2022-02-10]
  • V2 [2021-01-25] unpublished
  • V1 [2021-01-25] unpublished
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Please note that as of June 2023, Sarah D. Gunnery, PhD is the current Principal Investigator of this data collection.

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.

Researchers define social self-management as the practices and experiences that ensure personal social comfort while supporting mental and physical well-being. Articulating this model will guide research to identify social factors that are deleterious to or protective of quality of life when living with chronic disease. 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 overall 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. Demographic variables include age, gender, ethnicity, income, marital status, education, and employment.

Gunnery, Sarah D., and Tickle-Degnen, Linda. Emergence and Evolution of Social Self-management of Parkinson’s Disease, Greater Boston Metropolitan Area, 5 states, 2013-2019. Inter-university Consortium for Political and Social Research [distributor], 2022-02-10. https://doi.org/10.3886/ICPSR37631.v3

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United States Department of Health and Human Services. National Institutes of Health. National Institute of Nursing Research (5 R01 NR013522-05)


This data collection may not be used for any purpose other than statistical reporting and analysis. Use of these data to learn the identity of any person or establishment is prohibited. To protect respondent privacy, this data collection is restricted from general dissemination. To obtain this file, researchers must agree to the terms and conditions of a Restricted Data Use Agreement in accordance with existing ICPSR servicing policies.

Inter-university Consortium for Political and Social Research

2013-10-01 -- 2019-03-31

The specific aims of this 3-year longitudinal study of persons with the disease and their care partners are: 1) characterize social self-management trajectories over a 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.

There are seven in-person assessments of approximately two hours duration and in-person, one at baseline and one every six months thereafter, with six in a clinical research lab and one in the home. Between the 6-month full assessments, there is an additional brief telephone call (15 to 30 minutes), totaling seven phone calls over three years. Frequent points of contact, while also building statistical power, increases the possibility of capturing remembered details of daily life that send health patterns into non-linear trajectories, such as anniversaries, retirement, bad colds or significant family events.

At each session, initially, participants with Parkinson's Disease (PD) and care partners are interviewed separately with parallel questionnaires to assess each of their daily life activities, health and quality of life. After separate interviews, the two are interviewed together about their combined social self-management. Participants with PD are asked to take their medication approximately 45 minutes before their assessment session in order to be "on", that is, moving and functioning at maximal capacity during their session.

A number of participants, over the course of the study, were unable to come to the lab for their scheduled in-person assessments, completing our standard telephone assessment instead. These data are collected in one data file. Additionally, these participants' data have been incorporated into the larger in-person data sets, using the following procedure. The Short Form (version 2) Health Survey (SF12v2) and the Social Isolation Domain of the Nottingham Health Profile variables are collected in all assessments, so these data have been added from the alternate phone interviews to the larger in-person data sets exactly, and their scores calculated. The Parkinson's Disease Questionnaire (PDQ) 8 consists of items from the PDQ 39, so the PDQ 8 data from the alternate phone interviews has been added to the corresponding PDQ 39 variables (see list, below) in the larger in-person data sets. PDQ 8 scores were then calculated for all participants. For information updates, any medicine changes mentioned in the alternate phone interviews have been added to the medication change variables in the larger in-person data sets. All other types of updates from the alternate phone interviews have been added to the general updates variables.

Participants were recruited via the Movement Disorders Clinic at Boston Medical Center, Parkinson's Disease support and other group meetings, and ads on websites.

Individuals who respond to recruitment are screened in a 1-hour session by a movement disorders neurologist and movement disorders nurse specialist for eligibility and to collect demographic data and conduct a medical history protocol.

Longitudinal, Longitudinal: Cohort / Event-based

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

Individuals, Dyads

Primary interview measures include social participation and management of social activities; social networks; social comfort, health, and well-being; and expressive nonverbal capacity.

Variables measure the following components of the International Classification of Functioning, Disability and Health: Activities and participation, Body function, and Environment.

Not applicable.

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



2022-02-10 Qualitative data have been added to the collection in zipped packages.

2021-01-25 ICPSR data undergo a confidentiality review and are altered when necessary to limit the risk of disclosure. ICPSR also routinely creates ready-to-go data files along with setups in the major statistical software formats as well as standard codebooks to accompany the data. In addition to these procedures, ICPSR performed the following processing steps for this data collection:

  • Created variable labels and/or value labels.
  • Created online analysis version with question text.


  • The public-use data files in this collection are available for access by the general public. Access does not require affiliation with an ICPSR member institution.

  • One or more files in this data collection have special restrictions. Restricted data files are not available for direct download from the website; click on the Restricted Data button to learn more.

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This study is maintained and distributed by Advancing Research on Disability.