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Sickle Cell Disease
Recent years have seen a number of different investigations of the issues involved in the transition of care -- from pediatric-oriented to adult-oriented services -- for those who suffer from sickle cell disease. Although different researchers have taken a number of different approaches to the question, which I hope to survey in order to provide some report on the current state of opinion regarding transition of care, all are agreed that the current flurry of investigative interest stems ultimately from a piece of very good news: the vertiginous decline in mortality rates for children suffering from sickle cell disease. The historic response to a diagnosis of pediatric sickle cell disease was to minimize patient and parental expectations for prognosis, for the prospect of reaching adulthood would be slight indeed. Telfair Loosier (2004) note that survival rates for pediatric sickle cell disease have improved so vastly that the vast majority of cases are now likely to live past the age of eighteen: they assess survival rates past eighteen at 94% for sickle cell disease itself, and 98% for the milder forms of the disease. Six years later, Quinn Rogers et al. (2010) note that the statistics have changed drastically even with the current cohort of pediatric patients: the ultimate cause of death for young adult sickle cell disease sufferers has itself shifted, and in the 2010 study population all of the deaths they recorded occurred after the age of eighteen. But the largest demographic cluster of deaths occurs shortly after the transition to adulthood at eighteen, now raising the question of what providers can do differently, or concentrate on, in this critical period in the management of the illness. Hence the recent increase in research interest, as researchers hope to determine how health care providers may best respond to the changing face of this disease, especially in light of Quinn Rogers et al.'s implication that the medical transition process may now hold more culpability for the majority of deaths than the disease. I hope that a survey of the relevant literature will show the broad consensus that exists regarding the crucial issue of transition of care from pediatric to adult.
The basic mechanism of sickle cell disease is well understood and Davies and Oni (1997) provide a good summary -- sickle cell disease is a disorder of hemoglobin, the blood's own mechanism for effecting oxygen transfer from the lungs to be transported elsewhere in the body, causing the distinctive sickle shape of the red blood cells. The most common clinical problems compained of are vaso-occlusion, with attendant risk of vaso-occlusive crisis, usually expressed by the patient as extreme pain. Severity of the disease is measured by the incidence of these severe pain episodes, and the disease can lead to death by pulmonary complication, cerebrovacular accidents, or infections (to which sickle cell sufferers are particularly prone, due to an immunocompromised state caused by the spleen's inability to process fully the sickle cells themselves). Sickle cell disease is genetically transmitted, and relate to the presence of a single gene (the "sickle Beta globin gene"). It is thought that this gene achieved particular prevalence among the African genetic populations because it also carries with it a phenotypical increase in level of protection against malarial infection, and thus the evolutionary mechanism for its survival (despite its role in the aetiology of sickle cell disease, which easily proves fatal) is explained in these terms. But the genetic prevalence is remarkable: Davies and Oni (1997) estimate it as "up to 1 in 4 West Africans and 1 in 10 Afro-Caribbeans" is a carrier of the gene.
Obviously any assessment of sickle cell disease must take into account the fact that the preponderance of those afflicted by it are African-American. Numerous studies have been done to investigate this specifically, with the sociologic and economic difficulties that are potentially entailed by such a racially-defined patient population, but the most significant conclusions come in the assessment specifically of pediatric care for sickle cell disease. Slaughter and Dilworth-Anderson (1988) specifically surveyed the African-American population to assess standards of family-provided pediatric care, in the presence of and absence of a strong traditional family structure (with two married parents). They concluded that the majority of supportive care came from extended kin networks but with an attendant problem of decline in such support between diagnosis and later childhood. Meanwhile Barakat Lutz et al. (2005) offer an additional complication to the question of pediatric care: adherence to treatment protocols leads to lower overall quality of life for affected children. They specifically note that this leads to particular difficulties within minority communities with members that may have an uneasy relationship already with the health care infrastructure. Overall, then, these sufficient worries about pediatric diagnosis seem to lead to a greater level of attention from health care professionals themselves, in terms of specific supervision and support. How is the transition to be handled if there is a decline in such attentions?
Ideally there would be no such decline; Davies and Oni (1997) are firm in their insistence that "all patients with sickle cell disease should be registered with and monitored by a specialist clinic" so that the close supervision, especially during the pain attacks associated with vaso-occlusion, will always be available. But there is a sense in the literature overall that perhaps the psychological transition between different types of care is not being addressed, certainly not with the level of attention that is required for what may ultimately prove to be a psychologically difficult (as well as physically agonizing) diagnosis for young persons. Jenerette and Brewer (2010) address some of the broader psychological issues present in their assessment of the larger issue of "stigma" associated with the disease. Again, the racial or economic situation of the patient plays a large role in the handling of these social difficulties: Jenerette and Brewer note that "the increased use of the health care system only negatively impacts the sickle cell disease-stigmatization cycle that continues for the young adult with SCD," potentially leading to avoidance. They also note the rise in "issues related to school absenteeism, increased use of the health care system, decreased school and social activities, as well as poor adaptation" which are only worsened by "variables such as race, gender, age, [and] socioeconomic status" that further negatively impact the condition of the diagnosed child. From the specific racial standpoint of African-Americans, though, Jenerette and Brewer indicate a larger sense of conflict with the health care system in general, noting that "the credibility or trustworthiness of young African-American adults with SCD is often questioned by health care providers, who label patients as malingerers or manipulators, or even drug seekers." Although Jenerette and Brewer do not specifically address the question of transition, their study has clear implications for the subject: if we consider a patient with sickle cell disease who, complaining of an attack at age ten, is handled well by the hospital system only to be treated with disdain or doubt at age sixteen, then we might understand the disjunction not only between patient care before and after young adulthood, but also the broader disjunction between patient population and heatlh care system. Jenerette and Brewer's conclusions offer a sobering challenge to health care providers.
But if the current state of the transition process seems to be failing the patient population, is this evident to providers? Telfair Loosier et al.'s 2004 study approaches the question of transition from the angle of provider assessments. They find that health care providers were in broad agreement that greater structure was needed for the transition than was currently in place -- surveying the status quo, Telfair Loosier et al. find that only a very small number of health care providers would actively involve themselves in the transition, suggesting the need for some kind of mandate for an official oversight process. The consensus is fairly broad that larger structural support is required across the board to integrate providers' own involvement with the transition process alongside other, ideally more structured, approaches among the family and extended kin networks, as well as broader community-based awareness and support.
From the standpoint of the patient, however, there may be additional psychological factors involved in whether or not the transition may be a success. McPherson and Thaniel offer an important caveat with their emphasis on "assessing patient readiness" for such transition. Their 2009 study offers some sobering conclusions: they found that, while adolescents were on the whole receiving adequate medical care, it did not include an adequate amount of preparation for the ultimate transition out of pediatric care and into adult care of the condition. The adolescents in their study provided a sharp contrast to the young adults and older adults surveyed, who expressed more comprehensive knowledge about their own condition, and more interest in learning about the eventual transition as part of their own health care. McPherson and Thaniel define the "readiness" for transition to adult care as being a joint measurement of patient knowledge and…[continue]
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