Research Paper: Sickle Cell Disease Recent Years

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[. . .] Levels of interest and overall patient "readiness" were found broadly to increase when measured with the patient's age but had an inversely proportional relationship to self-assessed disease severity (including pain and symptoms). As the pain or severity worsens, McPherson and Thaniel concluded, so does the patient's psychological readiness for transition decrease.

Treadwell Telfair et al. (2011) represent the most recent comprehensive survey of the transition issues involved in sickle cell disease care, and they hope to offer new directions for both practice and for research. They acknowledge a number of "systemic" difficulties at the outset which have little to do with patient motivation, such as "limited access to adult providers." Moreover other patient issues they identify are not specifically psychological, such as "absence of financial independence" or "increasing morbidity with age," both of which seem like specific consequences of chronic illness of this magnitude. For Treadwell Telfair et al. one of the greatest limitations with the present system of transition is the way in which it is observed bureaucratically, in the form of an "exit meeting" almost -- instead they emphasize that the transition should be considered "a process occurring over time and not a cross-sectional event." This allows for the flexibility towards patient readiness that McPherson and Taniel had laid such emphasis on. Studies overall emphasize the need for greater institutional methods of patient support -- Wojciechowski Hurtig and Dorn (2002) assess the various complicating factors that have made sickle cell disease so difficult in this regard, and make a strong case that what is required is the institutional adoption of "case management services" so that a full team (including social worker and psychologist) can assist in the handling of the patient. But it is worth noting that other authors have already recorded the first steps taken by many health care providers toward building this new infrastructure from the ground up. The issue, though, is aptly identified by Wojciechowski Hurtig and Dorn: there are so many factors involved in the transition, it may be difficult for just two physicians to handle it together.

In response to this accurate assessment of complexity, Treadwell Telfair et al. (2011) propose a "bio-ecological systems" approach which emphasizes five separate environmental systems which may act upon the patient, ranging from the biological (i.e., the effects of sickle cell disease upon the patient's actual body and physical abilities or wellness) to the social microsystem (the immediate environment of family, school, peer group and neighborhood). The following three emphasize larger factors such as culture (in this case, urban America), patterning of events and transitions over the entire life course (which includes an awareness of the increasingly dim prognosis of sickle cell disease with increasing age), and sociohistorical circumstances (such as the fact of disproportionate representation of African-Americans among the overall patient population for sickle cell disease, a fact readily explained but still deeply felt). Their conclusion is that health care providers have to maximize the ability of the transitioning patient to take control of his or her own health care management, which includes a psychological assessment of the level of willingness or ability on the part of the patient to be receptive to new information and an increased role in self-assessed management of the condition. But Treadwell Telfair et al. suggest a more holistic approach to care management than has previously been recommended, in which they help the transitioning patient assume not only the "adult medical model," but also are assisted in assuming "responsibility for their physical, psychological, social, educational and vocational well-being." And providers' awareness of the transition must be built in with the recognition of the shifting statistics of life expectancy for those with sickle cell disease: Treadwell Telfair et al. state bluntly that "it is now recognized that transition should begin at birth" and the family encouraged "to envision a future for the child with special health care needs."

Treadwell Telfair et al. offer their thoughts on a future "research agenda" for the issues relate to transition from pediatric care to adult care in the management of sickle cell disease. They note that the increased calls for greater structural support have led to the establishment of transition programs by many health care providers, but they stress that "there is a need to apply consistent measurement across programs." Stressing the complexity of factors involved in sickle cell disease and its demographics, they recognize the need for a multipronged and flexible approach, stating that "interventions should be multifactorial" and that future research is required on "developmental, medical and life skills" of the pediatric sickle cell patient, as well as for pediatric diagnoses of chronic conditions more generally (a subject whose comparative neglect has compounded the difficulties of treating sickle cell disease specifically, with its host of attendant sociological, economic, and stigma-related complications).

Doulton (2010) describes the operation of one program which has already been imposed to help deal with the issues of transition. It is the program assessed by Doulton, in place at the Children's Regional Sickle Cell Program, jointly administered by the Santa Rosa Children's Hospital and the University of Texas Health Science Center in San Antonio, which offers a "comprehensive program" for children and adolescents. It is from Doulton's account that Treadwell Telfair et al. take their emphasis on the beginning of preparation for transition at birth: Doulton describes how the "newborn's initial visit" to the clinic will be when the transition program is explained to the family, and at age thirteen all patients are given a "Preparation for Transition Binder" which will provide them with information and which is reviewed with the patient and with guardians on a regular basis by health care providers. Doulton states the goal as providing a "continuum of care" but also establishes that the structure of the program is calculated to ready the patient for transition at eighteen, to coincide with a general sense of life events occurring at the same age. But at the same time, the services Doulton describes are already straining towards the increase in kinds of attention suggested by Treadwell Telfair et al.; social work intervention is required, Doulton notes, to prevent an "emergency 'transfer of care' to an adult provider" due to "pregnancy or incarceration," which obviously requires a community-specific or population-specific approach to the additional services and counseling provided to sickle cell disease patients. Doulton is firmly moralistic in her approach to these sorts of issues, noting of the clinic in general that "one major lesson that has been learned is that you cannot change anyone's behavior if they do not see their behavior as a problem (i.e., incarceration, not finishing high school, no job potential, pregnancy or not having health insurance)." In other words, the overall boon of increased life expectancy which has arisen quite recently over the past two decades -- and somewhat unexpectedly from the standpoint of institutional health care providers, who suddenly look like they are not doing their job -- is a double-edged sword, in that it now forces the patient population to address various forms of psychological difficulty or social pathology that may come from the sense that one is destined to die young. From Doulton's standpoint, this sort of social work is a necessity. It is handled largely in a series of age-structured stages, so that at age thirteen the patient is given an initial binder of information related to the transition, with instructions on everything from how to track medical appointments to pain management plans to educational CD-ROMs and web site addresses. But from fourteen to sixteen there is a more practical hands-on approach to this support, as the patients are coached to "develop the skills necessary to communicate and advocate for themselves from triage through to the discharge" from an emergency room to deal with the vaso-occlusive pain of an attack of sickle cell disease.

But even Doulton's model has its problems, ones which may perhaps be addressed by Treadwell Telfair et al.'s suggestions for future research on these transition issues. For Doulton's part she notes certain things which the program surveyed has not yet managed to deal with adequately: for example, in the specific attempt to bolster peer support for the patient population as they transition, Doulton notes that "we have attempted to bring our teenagers together for peer support groups without success." She identifies this as a goal for the future, and hopes that a solution will present itself with greater facility in dealing with the issues in question. Btu the difficulties are always going to be present, Doulton acknowledges: "it is truly a delicate situation," she concedes, "to assist the patient to strive for their dreams with consideration of the realities of having a debilitating chronic illness that is unpredictable." But in terms of a first step towards the establishment of a broadly-accepted set of protocols for the establishment and maintenance of a more holistic approach to the transition between pediatric and adult care for those diagnosed with sickle cell disease, Doulton's model seems admirable, and likely… [END OF PREVIEW]

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Sickle Cell Disease Recent Years.  (2011, March 3).  Retrieved April 18, 2019, from https://www.essaytown.com/subjects/paper/sickle-cell-disease-recent-years/8004051

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"Sickle Cell Disease Recent Years."  Essaytown.com.  March 3, 2011.  Accessed April 18, 2019.
https://www.essaytown.com/subjects/paper/sickle-cell-disease-recent-years/8004051.