Attitude is rated most important in determining health-related quality of life for adolescents with spina bifida.

By Rob Ingraham

While a positive attitude has always been considered an important factor in successfully adapting to a disability, researchers have begun to prove these assumptions in scientific studies.

Researchers in Wisconsin and Indiana recently examined health-related quality of life (HRQOL) issues for young people and adolescents with spina bifida and concluded that adolescent beliefs, rather than any characteristic of the condition itself, are most associated with HRQOL outcomes.

HRQOL was defined as a person’s perception of their well-being—their emotional, physical, or social status that might be affected by their condition.

What is Spina Bifida?

An estimated 70,000 people in the United States are currently living with spina bifida (SB) the most common permanently disabling birth defect. SB is a neural tube defect (a disorder involving incomplete development of the brain, spinal cord, and/or their protective coverings) caused by the failure of the fetus’s spine to close properly during the first month of pregnancy. Infants born with SB sometimes have an open lesion on their spine where significant damage to the nerves and spinal cord has occurred. Although the spinal opening can be surgically repaired shortly after birth, the nerve damage is permanent, resulting in varying degrees of paralysis of the lower limbs.

Up to 90% of children with the worst form of SB have hydrocephalus (fluid on the brain) and must have surgery to insert a “shunt” that helps drain the fluid—the shunt stays in place for the lifetime of the person. Other conditions include full or partial paralysis, bladder and bowel control difficulties, learning disabilities, depression, latex allergy and social and sexual issues.

Adolescents and young adults are especially at risk for multiple “negative adaptations” to SB because of the multiple organ systems affected by SB, which has resulted in significant personal and societal costs.

Negotiating Adolescence

In the current study, researchers defined adaptation as “success with the major developmental tasks expected for a person of a given age and gender in the context of his or her culture, society, and time. Adolescents who achieve high levels of adaptation are functioning well at home and school and are generally satisfied with life, school, and social activities.” For adolescents, this adaptation includes becoming skilled in managing physical health, developing positive mental health, such as positive self-esteem without behavioral problems or depression, while “developing age-appropriate social friendships and romantic competencies and achieving academic success.”

In a review of the existing scientific literature on HRQOL and chronic illness in young people, the researchers cited earlier studies that found that children and adolescents with a variety of chronic health conditions generally had lower HRQOL than their peers, but there was “substantial” individual variation. In addition, when examining the impact of their condition on HRQOL, many researchers found that adolescents and young adults report that the type of condition or its severity is not the most significant factor in explaining HRQOL.

In a pilot study released in 2002, the researchers found “strong and consistent relationships between HRQOL and adolescent beliefs such as attitude, efficacy, hope, and coping, as well as significant family resourcefulness measures such as family satisfaction, family overprotection and family activity.”

Living Well with SB

In the current study, 72% of the adolescents and young adults in the study resided in primarily two- parent families who were generally well educated and had a range of family incomes. Participants were between 12 and 25 years old, were 62% female, and primarily Caucasian. Ninety-five percent of the participants had a shunt.

The researchers found that the variable with the strongest relationship to HRQOL was the adolescent’s attitude toward SB. “While we do not expect adolescents to have a strong positive attitude toward having SB, developing the perception that one can live a full life with relatively few restrictions in spite of the challenges of SB, does seem to be a strong protective factor for youth in this sample. Perceiving SB as having a major negative impact on one’s life is related to more negative HRQOL outcomes.”

“[T]he data in this study support our previous findings of differential patterns of factors associated with HRQOL and functional status outcomes. While SB neurological severity contributes substantially to functional status, its contribution to HRQOL appears to be much smaller.”

The researchers noted that a main challenge for adolescents and young adults with SB is developing ongoing positive coping strategies and stressed that mental health services should be a central component of treatment.

“Clearly, as we transition adolescents and young adults to adult health care we need to continually query the adolescents and families not only about the adolescent’s functional status, but the adolescent’s and family’s satisfaction with a wide range of issues regarding care.”

Discussing the study’s implications for health care providers, researchers stressed that nurses, specifically, and other SCI team members need to remember that different factors are potentially related to two major targeted outcomes: functional status and HRQOL.

“If they are targeting HRQOL, interventions should address beliefs such as attitude or satisfaction with clinical status or family function. If the health care provider is targeting improvements in functional status, however, addressing interventions that impact decision-making participation and household responsibility may be optimal.”

The study, “Individual and Family Factors Associated with Health-Related Quality of Life in Adolescents and Young Adults with Spina Bifida,” appears in SCI Nursing, the online journal of the American Association of Spinal Cord Injury Nurses and can be viewed by visiting AASCIN’s Web site at www.aascin.org.

Authors of the study are Kathleen J. Sawin, DNS, CPNP, FAAN, a professor at the College of Nursing, University of Wisconsin-Milwaukee Children’s Hospital; Constance F. Buran, DNS, RN, Riley Hospital for Children, Indianapolis, Indiana; Timothy J. Brei, MD, Riley Hospital for Children; and Susan E. Cashin, PhD, College of Health Sciences, University of Wisconsin-Milwaukee.

For more information on spin bifida and current research trends, readers are urged to visit the Spina Bifida Association of America at www.sbaa.org.

Rob Ingraham is senior editor.