Recommendations for Patients with Sickle Cell Disease

Nurses are the largest health care workforce in the United States, but in our patients’ eyes, we may not have much force at all. In 2010, the Institute of Medicine (IOM) published a report on the Future of Nursingand made recommendations that just as easily could have come from patients with sickle cell disease (SCD), had we listened.

During the 2011 faculty retreat at the University of Illinois at Chicago College of Nursing, we deliberated on the IOM recommendations. Recently, as I read anecdotes of patients with SCD from my research on perceived injustice—a context-bound unfairness of treatment that a person receives from important others, such as health care providers—I noticed striking similarities with the IOM recommendations.1,2

SCD is an inherited blood disorder affecting approximately 80,000–100,000 people in the United States, mostly of African descent; it’s among the most common fatal inherited diseases. Pain crisis, its hallmark and most disabling complication, is severe and recurrent. Patients with SCD often interact with nurses within the health care system asking for help to control their pain.

As I read the research anecdotes from patients with SCD about their interactions with nurses, the patients’ message was clear: nurses lack enough training about SCD to provide competent pain care. They echoed the IOM’s recommendations:

  • Implement nurse residency programs

Some nurses recognize inadequacies in their education but blame their incompetency in caring for patients with SCD on nursing education programs. One patient wrote about a nurses’ comment to her, “When you attend school to become an RN, the [nursing] school [doesn’t] go into a lot of details on SCD.” Nurse residency programs could provide nurses with opportunities for exposure to diverse patient populations and engender necessary confidence for clinical practice. One may contend that lack of funding is a barrier for residency programs to implement this education. But it is costlier to the U.S. health care system not to do so. In 2006 alone, the cost of acute health care visits for patients with SCD was $2.4 billion.3 If nurse residencies could help reduce the 33.4% and 22.4% of patients with SCD re-admitted within 30 days and 14 days, respectively, for pain crisis, there would be possible substantial cost savings.4

  • Ensure that nurses engage in lifelong learning

Patients with SCD say that nurses need lifelong learning to champion their care. One patient asserted that “there needs to be more training on [SCD] and more understanding of why it is necessary to treat [SCD] pain crisis with narcotics ASAP to help patients get control of the pain and move toward ending the painful crisis.” Another said most of her problems come “from ignorant nurses.” Lack of time could factor as a deterrent for continuous learning. But with advancement in technology and Internet access, nurses can search and learn about a disease in no time and with little cost.

  • Prepare and enable nurses to lead change to advance health

Patients with SCD, particularly those who are knowledgeable about their conditions, want a partnership with nurses for better control of their pain. Nurses are well positioned to be their champions, but need personal and professional growth. A patient with SCD applauded a nurse who embodied this recommendation when she wrote, “Few nurses took training from Dr. X, and my nurse came to me and said that she now understood more on our pain and that she [learned] a lot about SCD that she didn’t know.” This statement gives me hope for our profession. We need more efforts to sustain it and advance health for those with SCD.

It is in nurses’ best interests to engage in personal and professional development. The consequence of inaction could be detrimental. We may be the largest health care workforce, but without much force we lose patients’ trust in our competency, profession, and ability to ease their suffering. The IOM report is a “dawn of a new day” for nurses, and we are in an excellent position to advance health care. We should take advantage of its recommendations and this opportunity to improve the nursing profession so that all patients maintain the trust they have bestowed upon us.

Acknowledgements

The work cited in this publication was made possible by funding from the NIH Basic and Translational Research Program (1 U54 HL090513) and the Computerized PAINRelieveIt for Adult Sickle Cell Disease (R01 HL078536). The author thanks the patients with sickle cell disease for their study participation; the staff at the Comprehensive Sickle Cell Center for their support of the work; her colleagues (Diana Wilkie, Ph.D., R.N., F.A.A.N.; Robert Molokie, M.D.; and Crystal Patil, Ph.D.); and the other members of the research team for their assistance with study implementation (Marie Suarez, Ph.D.), data management (Young Ok Kim, Dr.P.H., R.N., C.H.E.), and data collection (Harriett Wittert, B.S.N.; Jesus Carrasco, B.A.; and Veronica Angulo, B.A.).

References

  1. J.A. Colquitt, “On the Dimensionality of Organizational Justice: A Construct Validation of a Measure,” Journal of Applied Psychology, 86 (2001), 386–400.
  2. M. Elovainio, J.E. Ferrie, D. Gimeno, R. De Vogli, M. Shipley, E.J. Brunner, and M. Kivimaki, “Organizational justice ans sleeping problems: The Whitehall II study,” Psychosomatic Medicine, 71 (2009), 334–340.
  3. S. Lanzkron, C.P. Carroll, and C. Haywood, Jr., “The burden of emergency departments use for sickle-cell disease: an analysis of the national emergency department sample database,” American Journal of Hematology, 85 (2010), 797–799.
  4. D.C. Brousseau, P.L. Owens, A.L. Mosso, J.A. Panepinto, and C.A. Steiner, “Acute care utilization and rehospitalizations for sickle cell disease,” Journal of American Medical Association, 303 (2010), 1288–1294.