Parkinson's disease (PD) affects 1% to 2% of the US population over age 60, and its prevalence is increasing as the population ages. The proposed research will establish the natural evolution of the social lives of people with Parkinson's disease and their families and its relationship to health outcomes, and thus has the potential to significantly advance Parkinson's disease research and evidence-based neurological nursing and rehabilitation. The project develops the new construct of social self-management of chronic disease and results will inform the development of new interventions aimed at supporting social integration and preventing isolation and loneliness in people living with Parkinson's disease.
Parkinson's disease (PD), one of the most common age-related neurodegenerative disorders, affects facial, vocal and trunk muscles. As this progressive decline occurs, an expressive mask descends, limiting the person's ability to communicate emotions and intentions to others, which may give the impression that the person is cold, asocial or apathetic. Thus, as people with PD are living longer and residing in their homes longer, the burden of care-giving is unmitigated by the social and emotional rewards provided by an expressive individual. While this disability has been discussed in the literature, relatively little is known about how adults living with a chronic physical disease such as PD manage their social lives and how an inability to be emotionally expressive can affect social connections. Because social networks have been shown to be crucial to the overall well-being of people living with chronic diseases, research on how expressive capacity affects life trajectories and overall health is critically needed. The overall objective of this project is to understand the emergence and evolution of social self-management trajectories of people living with PD, and this work has the potential to significantly advance PD research and evidence-based neurological nursing and rehabilitation. The investigators will test the central hypothesis that PD expressive capacity predicts systematic change in the pattern of social self-management of PD and quality of life outcomes. The Specific Aims of this three-year longitudinal study of 120 patients with PD and a maximum of 120 care partners are: 1) Characterize social self-management trajectories of individuals with PD over a three-year period; 2) Estimate the degree to which expressive nonverbal capacity predicts the social self-management trajectory; and 3) Determine the moderating effect of gender on the association between expressive capacity and change in social self-management. Over the three-year project period, investigators will assess patients with PD and a care partner 14 times each to examine such factors as social participation and management of social activities; social network; and social comfort, general health and well-being. Descriptive analyses will be performed on the total sample and on meaningful demographic and clinical subgroups. This study is designed to have sufficient power to detect changes over time and to detect differences in gender. The investigators' contribution is significant because it will provide evidence to guide the development of interventions aimed at supporting social integration of people living with PD, thus leading to improved overall health. The proposed work is innovative because, to the best of the investigators' knowledge, it is the first to focus on the novel construct of social self-management and does so in a manner that reflects the daily lived experience of PD. Further, the investigators go beyond descriptive evidence to rigorously test hypotheses regarding factors known to contribute to social stigmatization, expressive capacity and gender.
Study Type
OBSERVATIONAL
Enrollment
146
Boston Medical Center
Boston, Massachusetts, United States
Tufts University
Medford, Massachusetts, United States
Activity Retention Over Time
Activity Card Sort domains of Instrumental Activities of Daily Living, Low- and High-Demand Leisure Activities, and Social Activities.
Time frame: 3 Years
The Chronic Illness Resources Survey (CIRS)
The 22-item CIRS, slightly modified for this study. Respondents rate the extent to which each of the 22 items is accessible or used as a resource over the past 6 months on a 1 (not at all) to 5 (a great deal) Likert scale. Subscale scores are created by averaging (possible range 1 to 5), and include the following: Personal Self-Management (3 items); formal institutions and services-- Health Care (3 items), Organizations (3 items), Work (3 items) and Media and Policy (3 items); and informal interpersonal environment-- Family and Friends (3 items) and Neighborhood (3 items). CIRS was modified by changing the wording of "chronic illness" to "health management." Higher scores represent a better outcome (i.e., greater access to and utilization of healthy resources).
Time frame: 3 Years
Social Network Composition
Self-reported responses to the following items: having a spouse or partner in the household (yes/no), number and composition of individuals living in the household, total number of children and total number of grandchildren.
Time frame: 3 Years
Contact Frequency
How often, on a 0 (not at all) to 7 (very frequently), are participants in contact with the following: Their most contacted child (if they have children) Their most contacted friend (if they have friends) Their partner in the study (if applicable)
Time frame: 3 years
Support Exchange
Rated on a scale from 1 (not at all) to 5 (a great deal), how often do participants give different types of support (Help with Daily Activities, Emotional Support, and Financial Support) to either their partner in the study (if applicable), the members of their household, and people outside of their household.
Time frame: 3 Years
Social Isolation Domain of the Nottingham Health Profile (NHP)
The Social Isolation Domain of the NHP is a 5-item measure: loneliness, difficulty contacting people, feeling that they have no one they are close to, difficulty getting along with others, and feeling like a burden. Participants rate their agreement with statements related to social isolation on a scale from 1 (extremely disagree) to 5 (highly agree) and these items are averaged. A higher score is a worse outcome.
Time frame: 3 Years
The Positive Social Interaction subscale items of the Medical Outcomes Study: Social Support Survey (MOS)
We modified the wording of the three Positive Social Interaction items in the MOS Social Support Survey to identify positive interaction frequency with the care partner or the person with PD, rather than a non-specific "someone." Our wording is: "How often is each of the following kinds of support available to you from your partner if you need it?" Each item is rated on a 1 (None of the time) to 5 (All of the time) scale, and these items are averaged. A higher score indicates a better outcome.
Time frame: 3 Years
The Stigma Scale for Chronic Illness (SSCI)
The 24-item SSCI has two domains: felt stigma and enacted stigma. Felt stigma items assess the emotional experience of stigmatization such as worry, embarrassment and self-blaming. Enacted stigma items assess the perception that people act differently toward the respondent: acting uncomfortable, being unkind, avoiding contact, and unfair treatment. Each domain contains 12 items (which are averaged to create domain scores), rated on a scale from 1 (never) to 5 (always). A total score is calculated by averaging all items. A higher score is a worse outcome and indicates greater stigma.
Time frame: 3 Years
The Interpersonal Communication Rating Protocol: Individual Expressive Behavior (Parkinson's Disease Version) (ICRP-IEB)
The 20-item ICRP-IEB is used as the primary measure of the expressive capacity of participants with PD coded from videotaped discussions. Four to ten trained coders rate the videos on a scale from 1 (low) to 5 (high) of the intensity, duration, and frequency of expressive behaviors from the following domains: facial, bodily, vocal, and verbal. Scores are averaged within domains. A higher score is a better outcome and indicates more expressive behaviors.
Time frame: 3 Years
Qualitative Self-Management Interview
Self-identified frustrating and satisfying recent events in daily life and how they manage these and similar events. Next, participants describe an activity outside of the home and how they get ready for it and manage PD symptoms to do it. Finally, participants are asked - How would you rate your overall ability to manage participating in your daily life activities? They provide a response on a scale of 1 (not at all effective) to 5 (highly effective). Participants with PD are videotaped and care partners are audiotaped. In a second management discussion, we bring together the person with PD and the caregiver and ask them to think of an activity outside of the home that they recently did together. The discussion is videotaped with the camera focused only on the participant with PD. One of the interviews is conducted in participants' homes, midway through the three-year protocol.
Time frame: 3 Years
Short Form -12 (SF-12, version 2)
The 12-item SF-12 (version 2) is a self-report measure of functional health and well-being that is a short form of the SF-36. It provides norm-based scores in two domains (physical and mental health), that compare the respondent against population level health. A higher score is better outcome for health.
Time frame: 3 Years
The Parkinson's Disease Questionnaire-39 (PDQ-39)
The PDQ-39 assesses life concerns of individuals with PD. It is composed of a summary index and eight domain scores-mobility, activities of daily living, emotional well-being, stigma, social support, cognitions, communication, and bodily discomfort. Each item is rated on a 0 (never) to 4 (always) scale. A higher score indicates a higher self-perceived frequency of quality of life and health problems in the past month that are due to the disease, with each domain normed to a scale on which 0 indicating never a problem and 100 always a problem. The summary index is the average of the normed domain scores. A higher score is a worse outcome for quality of life.
Time frame: 3 years
The Movement Disorder Society Unified Parkinson's Disease Rating Scales (MDS-UPDRS).
The Movement Disorder Society's Unified Parkinson's Disease Rating Scales (MDS-UPDRS) consists of 65 items across four domains: non-motor experiences, motor experiences, a motor examination, and motor complications, rated from 0 (normal) to 4 (severe). Subscales and a total score are calculated by adding items. A higher score is worse outcome and indicates more severe symptoms of Parkinson's disease.
Time frame: 3 Years
The Geriatric Depression Scale-15 (GDS)
The GDS consists of 15 yes or no items. The total score is the sum of all items (range: 0 - 15). A higher score is a worse outcome and indicates greater potential for clinical depression.
Time frame: 3 Years
The Montreal Cognitive Assessment (MoCA)
The MoCA consists of 30 test items that assess visuospatial and executive functioning, naming, memory, attention, language, abstraction, delayed recall, and orientation. Each correct answer is awarded one point, which are added to create a total score. A higher score is a better outcome and indicates less cognitive impairment.
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Time frame: 3 Years