Health Beliefs and Health Behaviors Among Minorities With Rheumatic Diseases

Health Beliefs and Health Behavior Practices Among Minorities With Rheumatic Diseases

This study will explore the diverse health beliefs and behaviors among minority patients with rheumatic diseases. These diseases may cause joint pain, stiffness or swelling. Some can involve bones, muscles, tendons or ligaments. Some cause abnormalities of the immune system-the body's defense against disease. Some rheumatic diseases are painful or deforming and some can be life-threatening. Many rheumatic diseases occur more often and more severely in certain minority communities. This study will explore psychosocial and cultural factors related to rheumatic disease in minorities.

Patients enrolled in the NIAMS protocol Natural History or Rheumatic Disease in Minority Communities (protocol #01-AR-0227) may participate in this study. Participants will be evaluated at the NIAMS Community Health Center at the Upper Cardozo Health Center in Washington, D.C.

Participants will be interviewed about individual and community health behavior, and health beliefs about rheumatic disease and its effects on several areas of their life, including mood and physical activity. The interview will be in one of the following formats: 1) in-depth cognitive interview, 2) focus group, or 3) face-to-face interview, as follows:

In-Depth Cognitive Interview

Participants take part in a one-time interview conducted by one investigator, observed by another, and tape recorded. The interview lasts from 1 to 2 hours.

Focus Groups

Participants take part in a group interview of from 6 to 10 people during a one-time tape-recorded session that lasts from 2 to 2-1/2 hours. The group discussion is led by a moderator and a facilitator, who takes notes and makes observations.

Face-to Face Interview

Participants are interviewed twice - first upon enrollment at the NIAMS Community Health Center and again after 6 months' follow-up at the Center.

Study Overview

Detailed Description

Rheumatic diseases are among the most common health problems in the United States. They are a diverse group of disorders, with several shared characteristics. Marked differences in the incidence, prevalence, severity, processes of care, and outcomes in a number of rheumatic conditions exist among racial and ethnic groups as compared to white Americans. Furthermore, access to health care and treatment also differs in the minority community as compared with the majority.

The effects of the disease may be modifiable by changes in life style, diet, activities and exercise. Such changes are difficult for patients to accomplish and various strategies have been developed to facilitate success. Strategies include educational materials and programs, diet and exercise programs, patient support and empowerment programs and the like. Differences in culture and environment, lack of culturally sensitive materials and approaches, and lack of trained personnel may make these tools ineffective in the minority community. Their effectiveness in the African-American or Latino clinic population has not been assessed to date.

This is a descriptive, exploratory study designed to examine the diverse health beliefs and behaviors among the minority patients who are enrolled in the NIAMS Natural History of Rheumatic Disease in Minority Communities protocol (# 01-AR-0227). Qualitative and quantitative methodology will be used to assess the psychosocial and cultural correlates of rheumatic diseases in newly enrolled patients both at intake and after six months of being followed at the NIAMS Community Health Center, an outreach site located in the District of Columbia in the Upper Cardozo Health Center.

Study Type

Observational

Enrollment (Actual)

140

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

    • Maryland
      • Bethesda, Maryland, United States, 20892
        • National Institutes of Health Clinical Center, 9000 Rockville Pike

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

18 years and older (Adult, Older Adult)

Accepts Healthy Volunteers

No

Genders Eligible for Study

All

Description

  • INCLUSION CRITERIA:

A. Phase I and II Focus Groups and Cognitive Testing of Instruments:

Previously enrolled patients with known or suspected rheumatic disease and participating in NIAMS protocol # 01-AR-0227 Natural History of Rheumatic Disease in Minority Communities Individuals identified as community leaders or members of the Community Health Partnership will also be included in the focus groups.

Phase III Baseline and Follow-up Assessments:

Newly enrolled patients (within 7 days of enrollment on protocol #01-AR-0227) with known or suspected rheumatic disease participating in NIAMS protocol # 01-AR-0227 Natural History of Rheumatic Disease in Minority Communities.

B. Age greater than or equal to 18 years.

C. Willingness and capacity to provide informed consent

EXCLUSION CRITERIA:

Patients will be excluded if any of the inclusion criteria on the parent protocol # 01-AR-0227 cannot be met.

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Time Frame
Pain
Time Frame: Cross- Sectional
Cross- Sectional

Secondary Outcome Measures

Outcome Measure
Time Frame
functional Status -Stanford
Time Frame: Cross-Sectional
Cross-Sectional

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start

September 22, 2003

Study Completion

April 12, 2018

Study Registration Dates

First Submitted

September 23, 2003

First Submitted That Met QC Criteria

September 23, 2003

First Posted (Estimate)

September 24, 2003

Study Record Updates

Last Update Posted (Actual)

April 17, 2018

Last Update Submitted That Met QC Criteria

April 13, 2018

Last Verified

April 12, 2018

More Information

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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