Table of Contents
- Project Breathe
- Quality of Life of Deaf and Hard-of-Hearing Children and Youth (Project HQL)
- Quality of Life of Overweight Youth: A Multicultural View (Project WQLT)
- Facial Differences Study
- Family Experiences Study
- Project First Impressions
- Project MOVE
- Rapid Assessment of Physical Activity
- Tourette Syndrome and Quality of Life
Project BreatheBackground & 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?
- 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
The Cystic Fibrosis FoundationProject Period:
08/01/2005 - 01/31/2007Publications/Reports/Products: E-mail the Project Manager
Quality of Life of Deaf and Hard-of-Hearing Children and Youth (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?
- Brenda Schick, PhD, University of Colorado
- John Niparko, MD, Johns Hopkins University
- Kathleen Sie, MD, University of Washington
Quality of Life of Overweight Youth: A Multicultural View (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 WQLT 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?
- Yvonne Flores, PhD, Mexican Institute of Social Security (IMSS)
- Leo Morales, MD, PhD, University of California, Los Angeles
Grant number 1 R01 DK071101-01A2 from the National Institute of Diabetes and Digestive and Kidney DiseasesProject Period:
09/01/2006 - 06/30/2009Publications/Reports/Products: E-mail the Project Manager
Facial Differences Study
This study was designed to assess quality of life issues associated with having a facial difference. It addressed questions such as, "What impact, if any, does living with a facial difference have on the quality of life of adolescents?" and "Are there positive aspects of having a facial difference?" We are completing the follow-up phase of this study.
Family Experience Study
This study was designed to assess the daily life experience of families who have a child diagnosed with ADHD. The study reviewed the impact of daily events and behaviors associated with ADHD, financial costs to the family because of the ADHD, and the quality of life of adolescents with ADHD. The Youth Quality of Life Instruments were used in this study, as well as the Daily Diary of Events and Behaviors.
Project First Impressions
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 continued 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. One purpose of this study was to assess levels of social stigma among youth ages 11-14 with facial differences. A second purpose was to develop methodologies for examining the association among social skills, stigma, and quality of life of youth with facial differences.
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. Project MOVE was a mentoring program that supported youth with disabilities as they moved on to the workplace and/or college after high school. The youth were matched with community mentors in Spokane County who would 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.
Rapid Assessment of Physical Activity (RAPA) Study: Phase I
This study was designed to find a way to monitor physical physical activity in older adults. The literature was reviewed, and a preliminary version of the RAPA was developed.
Tourette Syndrome and Quality of Life
This study was designed to assess quality of life issues associated with Tourette Syndrome.