DOI: 10.3886/icpsr37631.v1
title: Emergence and Evolution of Social Self-management of Parkinson's Disease, Greater Boston Metropolitan Area, 5 states, 2013-2019
title: Version 1

description: 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.
description: 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.
description: 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.
description: 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.
description: 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..
description: Presence of Common 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
description: Response Rates: Not applicable.
description: Datasets: DS0: Study-Level Files DS1: Screen and Baseline Assessment Public-use Data DS2: Screen and Baseline Assessment Restricted-use Data DS3: Telephone 1 Assessment Public-use Data DS4: Telephone 1 Assessment Restricted-use Data DS5: Six Month Assessment Public-use Data DS6: Six Month Assessment Restricted-use Data DS7: Telephone 2 Assessment Public-use Data DS8: Telephone 2 Assessment Restricted-use Data DS9: One Year Assessment Public-use Data DS10: One Year Assessment Restricted-use Data DS11: Telephone 3 Assessment Public-use Data DS12: Telephone 3 Assessment Restricted-use Data DS13: Home Visit Assessment Public-use Data DS14: Home Visit Assessment Restricted-use Data DS15: Telephone 4 Assessment Public-use Data DS16: Telephone 4 Assessment Restricted-use Data DS17: Two Year Assessment Public-use Data DS18: Two Year Assessment Restricted-use Data DS19: Telephone 5 Assessment Public-use Data DS20: Telephone 5 Assessment Restricted-use Data DS21: Two and a Half Year Assessment Public-use Data DS22: Two and a Half Year Assessment Restricted-use Data DS23: Telephone 6 Assessment Public-use Data DS24: Telephone 6 Assessment Restricted-use Data DS25: Three Year Assessment Public-use Data DS26: Three Year Assessment Restricted-use Data DS27: Telephone 7 Assessment Public-use Data DS28: Telephone 7 Assessment Restricted-use Data DS29: Alternative Assessment Public-use Data DS30: Alternative Assessment Restricted-use Data
description: cognitive assessment test
description: face-to-face interview
description: telephone interview
description: Persons with Parkinson's disease and their care partners in the Greater Boston Metropolitan Area and New England, United States. Smallest Geographic Unit: None.
description: 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.