Social Self-Management of Parkinson's Disease

NCT03938974 | Completed

• 2 other identifiers: 1212038R01NR013522
• Study Type: observational
• Target: 146
• Locations: 1 country
• Sites: 2

Brief Summary

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.

Conditions

Parkinson Disease

Keywords

self-management; social ecology; biopsychosocial; social participation; everyday living; person-centered; longitudinal

Outcome Measures

Primary Outcomes (10)

• Activity Retention Over Time

  Activity Card Sort domains of Instrumental Activities of Daily Living, Low- and High-Demand Leisure Activities, and Social Activities.

  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).

  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.

  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)

  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.

  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.

  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.

  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.

  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.

  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.

  3 Years

Secondary Outcomes (5)

• Short Form -12 (SF-12, version 2)

  3 Years

• The Parkinson's Disease Questionnaire-39 (PDQ-39)

  3 years

• The Movement Disorder Society Unified Parkinson's Disease Rating Scales (MDS-UPDRS).

  3 Years

• The Geriatric Depression Scale-15 (GDS)

  3 Years

• The Montreal Cognitive Assessment (MoCA)

  3 Years

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

We recruited People with Parkinson's disease as primary participants (Care partners were enrolled if available) through the Boston University Medical Center Parkinson's Disease and Movement Disorders Clinic, regional Parkinson's disease support groups, older adult service centers, and postings on research and advocacy websites. The neurological medical team conducted and supervised the medical history and screening.

You may qualify if:

• Diagnosis of idiopathic PD utilizing the UK Parkinson's Disease Society Brain Bank clinical diagnostic criteria, as evaluated by the neurological team
• Modified Hoehn and Yahr stage 1 through 4
• Score ≥ 26 on the Mini-Mental Status Exam
• Home setting within travel distance to study locations
• Able to communicate clearly and in English with research staff
• Interested in participating and willing and able to provide informed consent
• Person with PD must consent for care partner to participate
• Score ≥ 26 on the Mini-Mental Status Exam
• Able to communicate clearly and in English with research staff
• Interested in participating and willing and able to provide informed consent

You may not qualify if:

• Diagnosis of atypical Parkinsonism
• Modified Hoehn and Yahr Stage 5
• Score \< 26 on the Mini-Mental Status Exam
• Not able to communicate clearly and in English with research staff
• Person with PD does not consent for care partner to participate
• Score \< 26 on the Mini-Mental Status Exam
• Not able to communicate clearly and in English with research staff

Sponsors & Collaborators

• Tufts University: lead
• National Institute of Nursing Research (NINR): collaborator
• Boston Medical Center: collaborator

Study Sites (2)

Boston Medical Center

Boston, Massachusetts, 02118, United States

Location

Tufts University

Medford, Massachusetts, 02155, United States

Location

Related Publications (72)

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• Sprague Martinez L, Thomas CA, Saint-Hilaire M, McLaren J, Young J, Habermann B, Tickle-Degnen L. Using a Macro Social Work Strategy to Improve Outreach in Parkinson's Disease Research. Soc Work. 2018 Jul 1;63(3):265-268. doi: 10.1093/sw/swy026. No abstract available.

  PMID: 29722873 RESULT

• Berger S, Chen T, Eldridge J, Thomas CA, Habermann B, Tickle-Degnen L. The self-management balancing act of spousal care partners in the case of Parkinson's disease. Disabil Rehabil. 2019 Apr;41(8):887-895. doi: 10.1080/09638288.2017.1413427. Epub 2017 Dec 12.

  PMID: 29228835 RESULT

• Gunnery SD, Naumova EN, Saint-Hilaire M, Tickle-Degnen L. Mapping spontaneous facial expression in people with Parkinson's disease: A multiple case study design. Cogent Psychol. 2017;4:1376425. doi: 10.1080/23311908.2017.1376425. Epub 2017 Sep 8.

  PMID: 29607351 RESULT

• Gunnery SD, Habermann B, Saint-Hilaire M, Thomas CA, Tickle-Degnen L. The Relationship between the Experience of Hypomimia and Social Wellbeing in People with Parkinson's Disease and their Care Partners. J Parkinsons Dis. 2016 Jun 3;6(3):625-30. doi: 10.3233/JPD-160782.

  PMID: 27285568 RESULT

• Ma HI, Saint-Hilaire M, Thomas CA, Tickle-Degnen L. Stigma as a key determinant of health-related quality of life in Parkinson's disease. Qual Life Res. 2016 Dec;25(12):3037-3045. doi: 10.1007/s11136-016-1329-z. Epub 2016 Jun 3.

  PMID: 27259581 RESULT

• Tickle-Degnen L, Saint-Hilaire M, Thomas CA, Habermann B, Martinez LS, Terrin N, Noubary F, Naumova EN. Emergence and evolution of social self-management of Parkinson's disease: study protocol for a 3-year prospective cohort study. BMC Neurol. 2014 May 2;14:95. doi: 10.1186/1471-2377-14-95.

  PMID: 24885181 RESULT

MeSH Terms

Conditions

Parkinson Disease

Condition Hierarchy (Ancestors)

Parkinsonian Disorders; Basal Ganglia Diseases; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Movement Disorders; Synucleinopathies; Neurodegenerative Diseases

Study Officials

• Linda Tickle-Degnen, PhD

  Tufts University

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Professor

Study Record Dates

• First Submitted: April 17, 2019
• First Posted: May 6, 2019
• Study Start: September 23, 2013
• Primary Completion: March 28, 2019
• Study Completion: March 31, 2019
• Last Updated: May 6, 2019

Record last verified: 2019-05

Locations

US (2)