Study of Pain and Fatigue in Youth with Disabilities

What is the Study of Pain and Fatigue in Youth with Disabilities?

The main goal of this study is to create and improve health related questions used to measure pain and tiredness in youth with disabilities. In order to accomplish this goal we are conducting 150 one-on-one interviews with youth aged 8 to 20 years old who have a chronic condition associated with pain or fatigue, such as cerebral palsy, spina bifida, neuromuscular disease, spinal cord injury, or limb deficiency. This study will continue for two years with data collected from 6 interviews at approximately 4 month intervals. This allows us to study long term patterns of pain and fatigue in youth with spina bifida, cerebral palsy, neuromuscular disease, spinal cord injury or limb deficiency with the hopes of advancing future intervention and treatment approaches.

What do participants do once they are involved?

The youth interviews consist of questions about pain and fatigue as well as participation in activities, coping, depression, level of disability, sleep, literacy, quality of life, social and family support and general health. We also ask follow-up “cognitive debriefing” questions which allow the participant a chance to talk about their impressions and interpretations of the questions asked as well as review the participants understanding of certain terms and ideas presented in the interview. Youth interviews are either in person (at the University of Washington campus, The Pediatric Clinical Research Center (PCRC) on the Children’s Hospital Campus, the participant’s home, or at another location that is safe and convenient for the participant), or over the phone.

Parents participate by filling out a one-time survey packet that can be completed by mail, over the phone, or in person at the time of the child’s interview. The parent survey consists of questions about the child’s diagnosis as well as mood and behavior. This information is important in helping professionals better understand the impact of child disability on the family.

Analysis

In order to achieve our goal of creating and improving health related questions, at the end of two years, we will examine the psychometric properties of instruments used in the survey, use Classical Test Theory methodology (including factor analysis) and other appropriate methods to refine items and scales, and propose a set of improved core measures and/or items for assessment of pain and fatigue in youth with disabilities. This will provide a set of questions that assess pain and fatigue in a variety of individuals so that health care practitioners will be able to better evaluate and treat youth with disabilities.

Definitions

Cerebral palsy: An abnormality of motor function (the ability to move and control movements) that is acquired at an early age, usually less than a year of age, and is due to a brain lesion that is non-progressive. Cerebral palsy (CP) is frequently the result of abnormalities that occur while the fetus is developing inside the mother's womb. Such abnormalities may include accidents of brain development, genetic disorders, stroke due to abnormal blood vessels or blood clots, or infection of the brain. In rare instances, obstetrical accidents during particularly difficult deliveries can cause brain damage and result in CP.

Spina bifida: A birth defect (a congenital malformation) in which there is a bony defect in the vertebral column so that part of the spinal cord, which is normally protected within the vertebral column, is exposed. People with spina bifida can suffer from bladder and bowel incontinence, cognitive (learning) problems and limited mobility. Spina bifida is caused by the failure of the neural tube to close during embryonic development. The neural tube is the structure develops into the brain and spinal cord.

Neuromuscular Disease : Neuromuscular diseases are those that affect the muscles and/or their nervous control. Muscular dystrophy is a common neuromuscular disease in youth. In muscular dystrophy, the muscles of the heart and some other involuntary muscles are also affected, as well as other major organs. The foremost types of muscular dystrophy include:

Spinal Cord Injury: A spinal cord injury usually begins with a sudden, traumatic blow to the spine that fractures or dislocates vertebrae. The damage begins at the moment of injury when displaced bone fragments, disc material, or ligaments bruise or tear into spinal cord tissue. Most injuries to the spinal cord don't completely sever it. Instead, an injury is more likely to cause fractures and compression of the vertebrae, which then crush and destroy the axons, extensions of nerve cells that carry signals up and down the spinal cord between the brain and the rest of the body. An injury to the spinal cord can damage a few, many, or almost all of these axons. Some injuries will allow almost complete recovery while others will result in complete paralysis.

Limb Deficiency (congenital or amputee): A congenital limb deficiency is limb abnormality that exists at birth while an amputation is the severing of anything from a finger to an entire limb. Both types of limb deficiencies are characterized by vascular disruption in the area of abnormality. However, while congenital deficiencies are often due to a genetic mutation, amputations are commonly a result of trauma, tumor or infection.