The Emergence and Evolution of Social Self-Management of Parkinson's Disease
Conditions: Parkinson Disease
Sponsor: Tufts University

Official Title: The Emergence and Evolution of Social 
Self-Management of Parkinson's Disease 
 
Date of Document: May 2, 2019 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

STUDY PROTOCOL and STATISTICAL ANALYSIS PLAN 
This document reports the study protocol and statistical analysis plan approved by the 
Social, Behavioral & Educational Institutional Review Board of Tufts University Medford 
Campus (protocol # 1212038), and the Boston University Medical Campus (BUMC) 
Institutional Review Board (protocol # H-32114) on August 27, 2013 to initiate study 
implementation [1]. 
Background 
This project proposes that social self-management of chronic disease is a valuable 
quality of life indicator. The investigators 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 (PD) 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. 
 
To better understand the social lives of people with PD, it is necessary to translate 
motor impairment in the face, body and voice into social participation outcomes. A 
social ecological analysis of facial, bodily and vocal behavior produces this translation 
[2]. Healthy engagement in social life occurs in relation to bodily capacities and 
resources in the social environment of informal and formal social networks [3]. A 
longitudinal study of the daily lives of individuals with PD and their care partners was 
designed to validate the construct of social self-management as an evolving ecological 

system. The objective of this study is to understand the social self-management 
systems and trajectories of people living with PD. The specific aims are as follows: 
1. Characterize social self-management trajectories of individuals with PD over a 3-
year period by assessing: a) social participation and management of social activities, 
b) informal and formal social networks, and c) social comfort and overall health and 
well-being. Hypothesis: Over three years there will be a general decline in the 
facilitative components of social living that comprise social self-management.   
2. Estimate the degree to which expressive nonverbal capacity predicts the social self-
management trajectory. Hypothesis: People with PD with higher expressive capacity 
at baseline will have more positive social trajectories over time than people with less 
expressive capacity.    
3. Determine the moderating effect of gender on the association between expressive 
capacity in PD and change in social self-management. Hypothesis: Gender will 
moderate the association. The social trajectories of women are expected to be more 
vulnerable to the influence of expressive disability than the trajectories of men.    
Methods/design 
Research design 
This prospective cohort study design tracks general patterns of the sample as a whole 
as well as variation among individual trajectories in social self-management. The 
tracking creates evidence necessary to develop social life interventions that address the 
typical issues faced by people living with the disease as well as individual variations in 
needs. Over a 3-year period, the study plans to follow 120 individuals with PD and their 

associated primary care partner. Individuals with PD are included whether or not they 
have an identified care partner.  
 
There are seven full 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. This innovative design of 14 assessments over the three years aims at detecting 
social or health triggers that affect individual participant’s trajectories [4]. 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 
[5,6].  
Ethics review 
Recruitment, consent and data collection protocol have been approved by Social, 
Behavioral & Educational Institutional Review Board of Tufts University Medford 
Campus (protocol # 1212038), and the Boston University Medical Campus (BUMC) 
Institutional Review Board (protocol # H-32114).  
Participants 
Recruitment 
PD is documented to be more prevalent in men than women: 1.55 men for every 
woman [7]. To maximize the power of the hypothesis testing of gender differences (Aim 
#3) the plan is to oversample women, by targeting a gender distribution of 50% women 
(n = 60) and 50% men (n = 60) with the disease and their care partners, a maximum 

combined total of 240 participants. Participants will be recruited through the BUMC 
Parkinson’s Disease Movement Disorders Clinic, postings on PD and aging research 
and advocacy websites, and PD support groups in the urban, suburban and rural 
regions within driving distance of the Boston metropolitan area.   
Eligibility screening 
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. Informed 
consent procedures are conducted prior to screening for eligibility and consenting 
participants sign the BUMC consent form. Before their baseline assessment, 
participants sign their Tufts University consent form. Screening and assessments take 
place at the BUMC Parkinson’s Disease and Movement Disorders Center or at the Tufts 
University Health Quality of Life Lab in Medford.  
 
Inclusion criteria for participants with PD ensure minimal capacity to participate in 
the study procedures: 
1. Diagnosis of idiopathic PD utilizing the UK Parkinson’s Disease Society Brain Bank 
clinical diagnostic criteria, as evaluated by the neurological team, 
2. Modified Hoehn and Yahr stage 1 through 4, 
3. Score > 26 on the Mini-Mental Status Exam,  
4. Home setting within travel distance to study locations,  
5. Able to communicate clearly and in English with research staff,  
6. Interested in participating and willing and able to provide informed consent. 

Inclusion criteria for care partners are very flexible since participation of a care 
partner, while desired, is not required: 
1. Person with PD must consent for care partner to participate, 
2. Score > 26 on the Mini-Mental Status Exam, 
3. Able to communicate clearly and in English with research staff, 
4. Interested in participating and willing and able to provide informed consent. 
Baseline and 6-month follow-up in-person assessment procedures 
Each of the seven in-person assessment sessions is designed to take a maximum of 
two hours to complete. At each session, initially, participants with 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. Upon arrival they are asked about the timing and effectiveness of their 
medication on that day as well as the severity of their movement symptoms. Updates on 
medication changes and background information are collected, such as: marital status, 
living arrangement, occupational status, and notable mental and physical health or life 
events in the recent past or since the previous visit.   
Covariate measures 
 
The diminished expressive capacity that occurs in PD is a motor problem that can be 
confounded with the motor symptoms of depression, apathy or cognitive impairment 
[8,9]. At initial screening for this study, individuals with dementia are screened from 

participation (i.e., > 26 on the MMSE) yet dementia may develop over the course of the 
study. Participants are monitored for dementia and basic cognitive functioning at every 
visit with the Montreal Cognitive Assessment [10]. The Geriatric Depression Scale [11] 
is administered to participants at every visit to monitor depression throughout the study 
period. These measures are used for covariate analysis and to group individuals for 
blocked analyses.  
Primary interview measures 
Unless noted as otherwise, assessments are administered to both the participant with 
PD and the care partner. Variables and assessment procedures are described below in 
order of priority to the study.  
Social participation and management of social activities. Measures described here 
focus on assessing participants’ experience and participation in social activities and 
their self-management of social life, which fall under the Activity & Participation 
construct of the World Health Organization’s International Classification of Functioning, 
Disability & Health (ICF) [12], and its relationship to their motor and non-motor 
symptoms, which fall under the Body Function construct of the ICF. These measures 
are administered at every visit. 
 
1. Participation. The Activity Card Sort (ACS) [13] provides a measure of social 
participation and activity continuity from the past into the present. It contains 
photographs of individuals performing activities in four activity domains: 20 photographs 
of instrumental activities, 35 of low-physical demand leisure activities, 17 of high 
physical demand leisure activities, and 17 of social activities. The participants sort the 
cards into the categories of never done, do less than six months ago, do same as six 

months ago, do more than six months ago, and given up the activity. Scores are 
calculated for each domain and the total set of activities: 1) percentage of total retained 
activities, 2) percentage of retained activities that are performed less than six months 
ago, and 3) percentage of retained activities that are performed more than six months 
ago.  The ACS demonstrates test-retest reliability in older adult community-living and 
clinical populations is responsive to change in activities over a 6-month period [14] and 
correlates with mental and physical health in older adults [15]. It demonstrates 
convergent validity with the Adelaide Activities Profile [16], the PD-specific quality of life 
measure (Parkinson’s Disease Questionnaire-39) and the primary measure of PD 
symptoms (Movement Disorder Society Unified Parkinson’s Disease Rating Scales) 
[17].  
 
2. Management. An open-ended interview elicits participants’ reflections about self-
identified frustrating and satisfying recent events in daily life and how they manage 
these and similar events [18-19]. Probes include 1) What do you normally do to be able 
to participate in this or similar activities? and 2) What routines or strategies help you 
participate in this or similar activities? 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, the person with PD and the caregiver are 
brought together and asked to think of an activity outside of the home that they recently 

did together. Probes include: 1) How do the two of you get ready for an activity like this? 
2) Do you think about timing of medication?  3) Are there symptoms you have to control 
when you go out?  and 4) How do you manage doing both physical health activities, like 
taking medication, and engaging in social activities out of the home? The discussion is 
videotaped with the camera focused only on the participant with PD. 
Social networks. Measures described here assess participants’ social environments, 
specifically informal and formal social network composition, contact frequency, social 
exchange of support, and the physical environments of social participation—which fall 
under the Environment construct of the ICF. 
 
1. Social network composition, contact and exchange. At every visit, a set of 
items is used that discriminate cultural differences in social networks [20], including 
having a spouse or partner in the household, number and composition of individuals 
living in the household, total number of children and total number of grandchildren. 
Network contact is measured by frequency of contact with the most contacted child, with 
the most contacted friend, and with the care partner (if not the most frequently 
contacted child or friend). Social exchange is rated from 1 (very little) to 5 (a large 
amount) on 18 items. Nine of these items rate the amount of support received in three 
domains—help with daily activities, emotional support, and financial support—from each 
of three sources, if applicable: the other study participant (care partner or person with 
PD), other members of the household, and social network members outside of the 
household. The other nine items rate the amount of support given by the participant to 
the other care participant, other household members and others outside of the 
household, if applicable.  

 
2. Social resources. At every visit, a modified version of the 22-item Chronic Illness 
Resource Survey (CIRS) assesses quality, composition and use of personal coping 
resources, informal social resources (e.g., family, friends, neighborhood, community) 
and formal social resources (health care team, work, organizations, and media/policy). 
There are nine sub-scores and a total score assessing resource support. For this study, 
wording is modified slightly to encompass resources commonly available to people with 
PD (e.g., Parkinson’s support groups). The participant with PD and the care partner and 
respond to parallel forms that changed the wording of “chronic illness” to “health 
management” to make the questionnaire applicable for both. The original CIRS 
measure was validated on two large samples of community-living adults with a variety of 
illnesses and met all standards for psychometric soundness [21,22]. It is sensitive to 
change over a 1-year period and has provided findings useful for developing 
interventions.   
 
3. Home visit. One assessment, scheduled approximately 1.5 years into the study, 
is in the home of each participant with PD.  The modified CIRS was used by the 
interviewer to guide an audiotaped conversation about potential facilitators and barriers 
in the home and neighborhood environment that may affect social self-management.   
Social comfort, health and well-being. These measures assess social self-
management outcomes. The social comfort measures assess emotional well-being 
derived from one’s social networks and are associated with the Environment construct 
of the ICF. The health and well-being measures assess health quality of life, disease 
severity and impairments and are associated with the Body Function construct of the 
ICF.    

 
1. Social Comfort.  At every visit, three measures assess social comfort: the Social 
Isolation Domain of the Nottingham Health Profile (NHP) [23], the Positive Social 
Interaction subscale items of the Medical Outcomes Study: Social Support Survey 
(MOS) [24], and the Stigma Scale for Chronic Illness (SSCI) [25].  
 The Social Isolation Domain of the NHP is a 5-item measure of loneliness, 
difficulty with contacting people, difficulty getting along with others, and feeling 
like a burden [23]. The original dichotomous yes/no scale was converted to a 
more psychometrically sensitive and ecologically valid continuous measure. 
Participants rate their agreement with statements related to social isolation on a 
scale from 1 (extremely disagree) to 5 (highly agree). The domain score has 
been found to be responsive to change in PD over time [26]. It provides a 
measure of loneliness, which can predict motor decline and risk of death over 
one year in an older adult population including people with PD [27]. 
 The three Positive Social Interaction items in the MOS Social Support Survey 
were modified to identify positive interaction frequency with the care partner or 
the person with PD, rather than a non-specific “someone.” The revised wording 
is: “How often is each of the following kinds of support available to you from your 
partner if you need it?”  The original subscales were developed and validated on 
2,987 patients and have high internal consistency and stability over time [24]. 
These items measure mutuality in the care relationship [28].  
 The 24-item SSCI was developed based on focus groups with people 
experiencing chronic neurological disorders including PD and has two domains: 
felt stigma and enacted stigma [25]. 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. The total score and subscores demonstrate psychometric soundness 
in cross-sectional validation studies. For the current study, the original scale is 
used with the participant with PD. A modified form is used with care partners to 
identify how being with the person with PD affects their own felt and enacted 
stigma. For example, the modified wording (italicized) is "Because of my 
partner’s illness, I have felt left out of things." 
 
2. Health and well-being. The measures to assess health and well-being are the 
SF-12 (version 2) [29,30], the Parkinson’s Disease Questionnaire-39 (PDQ-39) [31] or 
the shorter form PDQ-8 [32], and the Movement Disorder Society Unified Parkinson’s 
Disease Rating Scales (MDS-UPDRS) [33]. The SF-12 (version 2) is the only one of 
these measures that is given to the care partner in addition to the person with PD. 
 The 12-item SF-12 (version 2) is a highly used and cross-culturally validated 
survey of functional health and well-being that is a short form of the SF-36 
[29,30]. It provides a norm-based score that can be used to compare the 
respondent against population level health. The SF-12 has been shown to be 
responsive to longitudinal changes in health. This measure is administered at 
every visit. 
 The PDQ-39 assesses life concerns of individuals with PD [31]. 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. 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 0 indicating never a problem and 100 always a problem. The index and 
domain scores have adequate internal consistency, convergent validity with 
health status and quality of life measures, test-retest reliability, and 
responsiveness to intervention. The exception is the social support scale which 
has weak psychometric properties [34]. The PDQ-8 summary index is a short 
form of the PDQ-39 that is administered in place of the PDQ-39 for approximately 
half of the in-person assessments to allow for time to administer the MDS-
UPDRS once per year. The PDQ-8 provides adequate psychometrics for 
detecting minimally important differences in change in health status of PD over a 
1-year period [32]. 
 The MDS-UPDRS is a widely-used clinical assessment and research tool for 
assessing motor and non-motor symptom severity [33]. Parts I and II assess self-
reported non-motor and motor aspects of daily living. Parts III and IV assess 
observed motor capacity and extent of abnormal movement and are the primary 
measures for this project. This assessment is administered once per year.  
Brief telephone assessments 
Calls are scheduled to interview the participant with PD and the care partner separately. 
The primary objective of these calls is to help inform findings relative to shifts in social 
trajectories. Participants have the opportunity to elect an alternate means of 
assessment, such as a mailed questionnaire, if a telephone assessment is perceived as 
burdensome. It has been found that telephone assessments that occur between 

scheduled in-clinic visits are welcomed by people with PD [35], who typically do not find 
them burdensome, and experience them as comforting, positive attention. The 15- to 
30-min audiotaped protocol involves the following assessments:  
1. Recent important life events, changes in physical and mental health, and 
medication changes since the previous assessment,  
2. PDQ-8 (administered only to the participant with PD), 
3. Social Isolation domain-NHP, 
4. Three simple 5-point scale questions (1= low, 5 = high), followed by open ended 
probes: 1) How satisfying is your social life right now? (probes: stressful or 
exciting changes in networks, finances, activities); 2) How satisfied are you with 
managing the effects of PD on your life right now? (probes: physical, social, 
emotional effects); and 3) How satisfied are you with your health right now? 
(probes: physical, social, emotional health), and 
5. SF-12 (version 2).   
Measure of expressive nonverbal capacity 
The Interpersonal Communication Rating Protocol: Individual Expressive Behavior 
(Parkinson’s Disease Version) (ICRP-IEB) [36] is used as the primary measure of the 
expressive capacity of participants with PD in videotaped discussions about 
management of social activities at baseline and 6-month follow-ups. This rating protocol 
employs a “thin slice” method, which links discrete behaviors (e.g., an upturned lip, a 
movement of the limb) into socially meaningful units (e.g., smiling, happiness, 
dominance) that are closely aligned with individuals’ social life outcomes (e.g. health or 
work success) [37-39]. The primary method is to extract short segments (thin slices) 

from a video or audiotaped social interaction, and have raters draw behavioral or social 
conclusions from the segments. For this project, 60-second clips are extracted from the 
videotapes at two standardized time points during the interview: first when the 
participant is asked to describe a frustrating activity, and again when asked to describe 
an enjoyable activity [40]. Sixty-second clips have been found to yield optimal accuracy-
to-slice length ratio for making judgments of behavior [41]. Using the methods described 
in the ICRP-IEB manual, trained research assistants view the clips separately and rate 
the quality, intensity and frequency of expressive behavior on 20 discrete actions (e.g., 
smiling, gesturing, bodily movement, vocal tone) and PD symptoms (tremors and 
postural slouch) that observers use as cues to form judgments about a target 
individual’s emotions, thoughts, social motives and personality. Previous studies provide 
evidence that expressive capacity in PD can be measured reliably and validly at this 
social level of analysis [40,42]. Expressive behavior composite scores are formed based 
on principal component analyses.  
Power Calculation   
The data analysis assumes 120 participants with PD and seven full assessment time 
points over three years; dropout per year at 15%; intra-class correlation (ICC) at 0.82, 
based on prior data [43]; and type I error at alpha=0.05. These metrics predict 80% 
power to detect a mean change over time of 0.40 of a standard deviation in the PDQ-39 
outcome per year; 80% power to detect a correlation between continuous variables of 
0.23; and 80% power to detect a difference of 0.50 standard deviations in the outcome 
scale between genders (Aim 3). Previous studies of similar outcomes have found a 

sample size of 120 to be adequate for demonstrating statistically significant effects [43, 
44]. 
Data analysis 
Aim 1: Social self-management trajectories 
Descriptive analyses 
Descriptive statistical analyses will be performed on the total sample and on 
demographic subgroups that are relevant to the progression of Parkinson’s disease 
(e.g., current age, age of onset, disease severity at baseline, gender). Mean trajectories 
over time will be plotted for all repeated measures by the same demographic 
subgroups. Scales will be checked for floor and ceiling effects. Associations between 
the scales, which represent the different components of social self-management, will be 
examined through scatter plots and relational statistics. 
Audiotaped open-ended discussions during in-person and telephone assessment 
sessions will be transcribed. Quantitative content analysis will be performed on the 
transcriptions using Linguistic Inquiry Word Count (LIWC) to describe proportions of 
verbal content meaningfully related to the three ICF social self-management categories 
in the study’s model [45]. LIWC contains word dictionaries that measure 80 language 
dimensions including psychological constructs (e.g. affect, cognition), biological 
processes (e.g. body, health), personal concerns (e.g., social, home, work, leisure) and 
linguistic indicators of socio-emotional experience and interpersonal interaction. The 
dimensions have been validated in over 120 published studies as indicative of a variety 
of life preferences and health outcomes [46] and in previous work on motivation 
indicators (e.g., helplessness, hopefulness, apathy) in PD [40]. Verbal content 

proportions from the LIWC analysis will be included with quantitative questionnaire 
results that are entered into quantitative descriptive and longitudinal analyses.  
In addition to quantitative content analysis, qualitative content analysis will be 
performed on the transcribed open-ended narratives using standard methods [47]. Each 
transcribed interview will be searched for phrases meaningfully related to the three ICF 
social self-management categories in this study’s model. These phrases will be coded 
to identify themes across participants that can be abstracted to social self-management 
categories and the relationships between these categories (e.g. phrases that link a 
social activity to motor symptoms). If the data reveal new dimensions to social self-
management, new codes, themes or categories will be developed to accommodate 
these data. To assess and assure coding reliability and dependability, two independent 
coders will assess a sub-set of data (approximately 40 transcripts of the same type) in 
an iterative process until coding agreement is achieved. Data will be summarized with 
coding categories and illustrated with participant quotations. Qualitative and quantitative 
data will be compared and contrasted to elaborate the construct of social self-
management. 
Models for longitudinal trajectories 
Longitudinal data will be analyzed using the multilevel model for change (also called 
random coefficient, mixed, or hierarchical model) [48]. Primary outcomes measured at 
baseline and the semi-annual fixed time points are: 1) retained activities (ACS), 2) 
proportions of quantitatively content coded words during open-ended responses of 
social self-management discussions (LIWC), 3) network composition, structure and 
exchange scores, 4) social network resource utilization scores (modified CIRS), 5) 

social isolation score, 6) positive interaction with partner score, 7) felt stigma and 
enacted stigma scores (SSCI), 8) physical and mental health scores (SF-12), 9) health 
quality of life with PD scores (PDQ-39 or PDQ-8), and 10) motor capacity scores (MDS-
UPDRS, Parts III and IV).  Outcomes measured at all 14 time points are: 1) physical 
and mental health scores (SF-12), 2) health quality of life with PD score (PDQ-8), and 3) 
loneliness score (Social Isolation, NHP). Temporal dynamics of these outcomes will be 
explored in order to better understand the similarities, differences and factors governing 
such dynamics. By including random effects, the population trajectory and the degree of 
variations of individual trajectories will be explored. Outcomes reported by both the 
person with PD and the care partner will depict both perspectives, which enable an 
assessment of the synchronicity between the two sources. Statistical tests of interaction 
terms will evaluate whether particular factors affect the ratings of one source more than 
another.  
The multilevel models can accommodate subjects with and without care partners, as 
well as incomplete data collection, as long as data are missing at random [49]. For 
sensitivity analyses pattern mixture models are used to account for the possibility of 
informative missingness. The models will stratify by pattern of and reason for missing 
data [50]. 
Effects of triggers on trajectories: Exploratory analysis 
For exploratory purposes, the general multilevel modeling approach is expanded to 
consider potential effects of unanticipated triggers assessed at the individually identified 
time points [4]. The timing of measurements will be calibrated as “time elapsed since an 
event” or “time preceding an event”. Recalibration enables synchronization of triggering 

events across the cohort, allowing determination of synchronized changes in one of the 
outcomes of interest after occurrence of an unanticipated event. For example, there 
may be an increase in loneliness following hospitalization of a spouse or a decline in 
social activity following an episode of physical illness. 
 Non-linearities with non-parametric fitting will be explored if a sufficient number of 
subjects have experienced a similar event. For example, some social triggers may have 
a temporary U-shaped trajectory. This description of potential rapid or unexpected 
changes in the trajectories is highly innovative for research in the social aspects of PD 
and other chronic degenerative conditions. Adding trigger event monitoring to the 
research design builds power for repeated measures, and it may illuminate the 
understanding of disease progression as a social ecological phenomenon.   
Aim 2: Expressive nonverbal capacity as predictor 
Analysis will start with a simple linear model, considering a random intercept and slope 
for each individual.  The assumption is that, the variation among individuals in the 
intercept and slope of their trajectories can be explained by subject characteristics, 
including expressive capacity at baseline. For example, it may be found that the rate of 
change in the study outcomes may vary and depends on expressive capacity at 
baseline. This preliminary step will guide the further model building.    
Multivariate models are built by first adding demographic factors, then clinical 
factors, and then other variables of interest including masking, life stage, and access to 
support. The number of variables are reduced in each group before adding the group to 
the model, and the number of variables are reduced further as groups are added. Since 
expressive masking will be measured at follow-up times as well, repeated measures 

analyses are performed to estimate the relation between change in expressive masking 
and change in social self-management.  
Aim 3: Moderating effect of gender 
Models developed for Aim 1 and 2 are applied to explore in detail the effect of gender 
on the modeling results. For example, it may be found that rates of change in the study 
outcomes depend on both, expressive capacity at baseline and gender. The test of the 
moderating effect of gender on the relationship between expressive masking and social 
self-management in PD is conducted by stratifying the analysis and by including an 
interaction term between gender and potential predictors. For all models, non-linearities 
in predictors are tested, and variables are transformed when necessary to obtain good 
model fit. Models will be examined with respects to over-fitting and fine-tuned to 
improve their performance.  
Problems and Alternative Strategies  
Attrition can be a problem in longitudinal studies of a disease like PD, due to morbidity, 
mortality or other uncontrollable factors. The investigators’ previous research, which 
enrolled similar numbers of people with PD, had a relatively low attrition rate despite 
significant time burden [43], and a similarly low rate is expected in the proposed study. 
Data are collected on reasons for any attrition, rigorous strategies are implemented to 
counteract controllable sources of attrition and these strategies are tested for their 
effectiveness. Retention strategies, such as activities that develop strong rapport with 
participants, may create unintentional “social intervention” effects on study outcomes 
[51]. Strategies are applied with the intent of maximizing retention while minimizing and 
monitoring unintentional effects on everyday social life.    

 
Although existing research is supportive of the hypothesis that gender moderates 
the effects of expressive capacity on life trajectories, there are many parameters of 
living with PD that cannot be controlled. Expressive masking may create vulnerability in 
women, but in general aging women are more likely than aging men to have strong 
social support networks, which is a possible confound for the current study [52]. Recent 
literature suggests that PD presents and progresses differently in men and women, for 
example, that women may have a more benign disease than men [53]. Gender research 
into quality of life domains is in its infancy, thus the current study is unusual and does 
not have precedents to follow. Gender is evaluated at all steps of the project.   
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