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Commentary: Severity of Illness, Functional Status, and HRQOL in Youth with Spina Bifida
Rehabilitation Nursing Editorial Board Member
The data in Dr. Leger’s article demonstrate some significant relationships, some obvious and expected that, nonetheless, validates the measures used, and others that raise issues for healthcare providers who deal with youths with spina bifida, especially as they go through transitions over a lifespan. These issues include the need for clinicians to use evidence-based research findings in practice and the need for centers to conduct longevity studies with these patients. The latter issue is supported by the new National Center on Birth Defects and Developmental Disabilities (NCBDDD), which focuses on examining the secondary disabilities that occur and the impact on quality of life; CDC funding is attainable for such centers.
For this sample population, Leger’s results reflect high-quality health care means providing holistic rehabilitation. Overall, the participants showed satisfaction with opportunities for social and recreational activities, including independence in activities and satisfaction with living arrangements. Three-quarters of the youths were in school (secondary, career technology, or college). Interestingly, though, of the 85% of the youths that were old enough to drive, only about one-third had their license; mobility apparently was not a barrier, however, since a large percentage of youth reported they were active.
About one-fourth of this sample was relatively healthy, while the rest reported having advanced pathological or comorbid conditions. The functional status of these youths was moderate to high, with toileting receiving lower scores. These scores shows a fairly independent sample of youths. The HRQOL also reflected scores toward the upper end of the scale, indicating this group was fairly positive about quality-of-life issues.
Relationships in this study were significant and expected—that functional status was lower with secondary/comorbid conditions and that the higher the lesion, the lower the functional independence.
Interestingly, ancillary data revealed that one-third of the youths reported unresolved emotional issues that significantly correlated with HRQOL. On a positive note, one-fifth of the sample reported excellent health, and half of the youths reported good health. Nonetheless, more than 70% reported chronic secondary/comorbid problems.
An important outcome was a statistically significant—positive correlation with age and self -perceived health problems; self-perceived health problems significantly negatively correlated with a lower quality of life. Therefore, those youths with the greatest number of health problems reported less quality of life.
Healthcare providers still have to make progress in serving this population, since one-third of this sample said they were still dealing with unresolved emotional issues and a large portion of the group was experiencing secondary and comorbid conditions.
The Leger article raises several important points. The first and most important is the lack of research on this population. With the advent of innovative treatments and technology, fewer youths with spina bifida will acquire secondary disabilities, and more will live longer, with a higher quality of life. Questions to be addressed deal with what the next decades of life will mean in terms of dealing with the aging process. However minor the effects of aging may be to a healthy individual, to the individual with spina bifida, these changes may mean the end of mobility and independence. These issues must be part of a transition plan that begins in childhood and continues through a lifetime.
A second point Leger makes is that there is a lack of measures for obtaining information on secondary and comorbid conditions and their severity on functional status and quality of life. As a new protocol is developed for infants with spina bifida that may be instrumental in preventing future renal involvement and other complications, so, too, is the need for protocols for other parts of the life spectrum. It is important to assess to what degree healthcare professionals are knowledgeable to assess for and counteract the factors that affect primary condition and prevent secondary/comorbid conditions as well as effects of aging process. We need tools to measure these factors, research to test them, and methods to use the results to prepare providers with the knowledge base to provide lifespan care to these individuals.
A third point that one can gather from this study is the need for transition planning across the life span. Those of us who work with these youths place great emphasis on transition from youth to adulthood (e.g., college, career, job, living arrangements, social life), but far too often, the lifespan approach is not utilized in health care. Glaser and Strauss (1967) advocated a trajectory approach to chronic illness/disability. This model provides healthcare providers, clients, and their families means to plan for the normal transitions related to aging to better enable them to cope in a positive manner. The rehabilitation specialist is the best equipped to advocate this model of care to primary care and clients.
For some with spina bifida, multidisciplinary rehabilitation care over the lifespan is not available. Rehabilitation providers need to prepare these individuals for what lies ahead and teach them when to seek out specialty care. For the fortunate ones who are receiving specialty care, research charting the effect of aging on clients with spina bifida should be an imperative for both financial and quality-of-care outcomes.
Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory. Hawthorne, NY: Aldine.