Current Projects
This page contains descriptions of current projects at the Seattle Quality of Life Group.
Table of Contents
Back to list of Current, Future and Past SeaQol Projects
Biobehavioral Cancer Prevention and Control Training Program
Project Breathe
Project First Impressions
Project Hearing Quality of Life
Project Move
Project Weight Quality of Life
Biobehavioral Prevention and Control Training Program
Mission
The mission of the Biobehavioral Cancer Prevention and Control Training Program is to train public health researchers, health services researchers, and health policy analysts in biobehavioral and outcomes research, communications, and practice outcomes as applied to cancer prevention and control.
Funder:
The National Cancer Institute
Project Period:
5 year training grant
E-mail the Program Coordinator
BCPT Website
Project Breathe
Background & Significance:
Health related quality of life has received increasing attention in the field of Cystic Fibrosis (CF) clinical research. Unfortunately, very little work has been done to assess patient derived symptom assessment in CF. A better understanding of patient derived symptoms is needed in order to assess the value of treatments and interventions, particularly symptom changes with acute therapy to treat CF pulmonary exacerbation. This study proposes to create a novel symptom questionnaire to define the symptoms associated with an acute CF pulmonary exacerbation; this represents Phase I of such a project. In Phase II, the symptom questionnaire would be validated in CF patients to determine its responsiveness to acute change in symptoms associated with treatment of a pulmonary exacerbation. Such a symptom instrument will markedly enhance our assessment of new treatment regimens in the CF population, and provide a novel outcome measure that will be critical to advancing the field and treatment of CF patients.
Study Aim(s):
The main purpose of this study is to create a CF-specific symptom questionnaire and diary and to test their feasibility and acceptability for use in a validation study. This will be achieved by conducting interviews with children, adolescents, adults with CF, and parents of children with CF about symptoms related to changes in their lung disease. The main purpose of this study will also be accomplished by meetings with CF clinical experts to assess principal symptom components which could be used to define a CF pulmonary exacerbation.
Question(s) this project hopes to answer:
- What are the severity and frequency of symptoms experienced during pulmonary exacerbation by CF patients?
- What is the effectiveness of interventions in reducing these symptoms?
Study Collaborators:
| Co-Investigator | Institution | |
|---|---|---|
| Chris Goss, MD, MSc | University of Washington Medical Center, Pulmonary and Critical Care Medicine | |
| Bonnie Ramsey, MD | University of Washington Medical Center, Cystic Fibrosis Center |
Funder:
The Cystic Fibrosis Foundation
Project Period:
08/01/2005 - 01/31/2007
Publications/Reports/Products:
E-mail the Project Manager
Project First Impressions
Background & Significance:
Alterations in the facial appearance of a child may impact the attachment of an infant and primary caretaker in early years, influencing the child's perception of himself. Later, peers and other adults may react to the facial difference and influence the growing child's sense of self. Because of its centrality in human interactions and development, facial differences may be particularly stigmatizing. Stigmatizing social responses to speech impairment or facial disfigurement may lead to negative self-perceptions of competence and physical attractiveness, which in turn can have an affect on the adolescents' quality of life. This study will continue the important explorations begun in our previous studies of quality of life among adolescents with craniofacial differences, by assessing how stigma is associated with quality of life and how social skills affect perceptions others have of adolescents with craniofacial differences.
Study Aim(s):
One purpose of this study is to assess levels of social stigma among youth ages 11-14 with facial differences. A second purpose is to develop methodologies for examining the association among social skills, stigma, and quality of life of youth with facial differences.
Question(s) this project hopes to answer:
- What are the attributes that people ascribe to faces that are used to determine whether or not they would want interact with a person?
- What is the relationship between perceived severity of a facial difference and these attributes?
- What is the association between self-reported quality of life and others’ first impression ratings (stigma)?
- To what extent can first impression ratings be altered by viewing positive or negative social interactions (video vignettes) illustrating different social skills?
Study Collaborators:
| Co-Investigator | Institution | |
|---|---|---|
| Cassandra Aspinall, LICSW | Seattle Children's Hospital & Regional Medical Center, Craniofacial Center | |
| Kathleen Kapp-Simon, PhD | Northwestern University, Cleft Lip & Palate Institute | |
| Ronald Strauss, DMD, PhD | University of North Carolina, Chapel Hill, School of Dentistry |
Funder:
National Institute of Dental and Craniofacial Research
Project Period:
8/1/2004 - 5/31/2007
E-mail the Project Manager
Project HQL
Background & Significance:
Previous studies of quality of life (QoL) among youth who are deaf or hard-of-hearing (DHH) have focused more narrowly on individual aspects of QoL, such as functional status and psychological well-being, peer relationship, self-esteem and inclusive education. These studies compared youth with hearing loss to children with normal hearing. Although generic measures are useful, instruments used with hearing youth may not accurately reflect the perspective of youth with hearing loss. Using measures of outcome that reflect the “voices” of persons with hearing loss is important to the development and evaluation of interventions that are culturally and socially sensitive and inclusive.
Study Aim(s):
Our goal is to use qualitative methods to identify and quantitative methods to assess the important QoL issues relevant to children and youth who have hearing loss. Results of the proposed qualitative work (Phase I) will be used to determine content for two hearing loss-specific outcome modules of the Youth Quality of Life Instruments: 1) The Child and Youth Deafness Module, and 2) The Child and Youth Hard-of-Hearing Module.
Question(s) this project hopes to answer:
- What education placement, program design and evaluations or other interventions are needed to improve the social and communication environment and skills of children and youth with hearing loss?
Study Collaborators:
| Co-Investigator | Institution | |
|---|---|---|
| Brenda Schick, PhD | University of Colorado | |
| John Niparko, MD | Johns Hopkins University | |
| Kathleen Sie, MD | University of Washington |
Funder:
Grant number 1 Ro1 DC008144-01A1 from the National Institute of Deafness and Other Communication DisordersProject Period:
01/01/07 - 12/31/09Publications/Reports/Products:
E-mail the Project Manager
Project HQL Website
Project MOVE
Background & Significance:
Among youth and young adults, the years between the ages of 16-26 are critical as many life decisions are made during this time such as choosing to go to college, pursuing a vocation, and where to live. For youth with disabilities this time is even more critical as in addition to the normal tasks of deciding upon a career path, they must also navigate the system while dealing with their disability and health care issues. Many youth and young adults are not effectively making the transition, from secondary education to work or college, and as a result, experience a much poorer quality of life than their nondisabled peers. Unsuccessful transition may be one contributing factor to so many people with disabilities living in poverty.
Study Aim(s):
Project MOVE is a mentoring program that supports youth with disabilities as they move on to the workplace and/or college after high school. The youth are matched with community mentors in Spokane County who listen and share experiences of achieving employment and educational goals. The youth-mentor relationship is a place for the youth to discover his/her unique desires and skills and receive help in utilizing various resources and options within the local community.
Question(s) this project hopes to answer:
- What program supports and connection to resources need to be in place to transition-aged youth/young adults with disabilities?
- How can the mentoring program achieve increased community integration, postsecondary education, and employment outcomes for disabled youth?
- How effective has the mentoring program been in achieving community integration, enrollment in postsecondary education, and employment for disabled youth?
Study Collaborators:
Funder:
Grant number H235S040082 from the U.S. Department of Education, Rehabilitation Services AdministrationProject Period:
10/01/04-09/30/09Publications/Reports/Products:
E-mail the Project Manager
Project MOVE Website
Project WQLT
Background & Significance:
Epidemiologic data indicate that the prevalence of overweight among US youth has reached 16%, with the highest rates observed among racial/ethnic minorities and persons living in poverty. In Mexico, one of every three adolescents is overweight or obese. Overweight youth are more likely than normal weight youth to become obese adults and are at-risk of developing obesity-related morbidity and mortality, most notably diabetes. Obesity is the most common nutrition-related disorder in the U.S., and may soon overtake tobacco as the leading cause of preventable deaths. Clearly a public health concern, reducing obesity, including overweight in youth, is one of the goals of Healthy People 2010.Yet little is known about youth’s perception of their weight status and if the growing prevalence of overweight is diminishing the stigma of obesity experienced by youth. Studies have shown that overweight youth experience a decreased health related quality of life, as well as, general quality of life. However, little is known about how weight management, weight loss or lifestyle change impacts quality of life of overweight youth.
Study Aim(s):
The Project Weight Quality of Life for Teens major aim is to develop, evaluate and test the responsiveness of a multiethnic overweight-specific adolescent & teen specific quality of life module, in US English and Mexican-American Spanish languages.
Question(s) this project hopes to answer:
- How do youth view weight affecting perceived quality of life?
- How does losing weight affect youth-perceived quality of life?
- How do lifestyle behavior change affect youth-perceived quality of life?
Study Collaborators:
| Co-Investigator | Institution | |
|---|---|---|
| Yvonne Flores, PhD | Mexican Institute of Social Security (IMSS) | |
| Leo Morales, MD, PhD | University of California, Los Angeles |
Funder:
Grant number 1 R01 DK071101-01A2 from the National Institute of Diabetes and Digestive and Kidney Diseases
Project Period:
09/01/2006 - 06/30/2009