eMedicine Specialties > Hematology > Red Blood Cells and Disorders

Sickle Cell Anemia: Follow-up

Author: Ariel Distenfeld, MD, Clinical Professor, Department of Medicine, New York University School of Medicine
Coauthor(s): Ulrich Woermann, MD, Consulting Staff, Division of Instructional Media, Institute for Medical Education, University of Bern, Switzerland
Contributor Information and Disclosures

Updated: Aug 26, 2009

Follow-up

Further Outpatient Care

  • Long-term follow-up is required for patients with SCD. This is a lifelong disorder.
  • The frequency of outpatient visits depends on the patient's clinical status.
    • For patients with minimal symptoms, a visit with blood work every 3-4 months is reasonable.
    • Others may need much more frequent observation.
  • Educate all patients to recognize signs of infection, increasing anemia, and organ failure.
  • Treat all infections, even trivial ones, very promptly and vigorously.
  • Institute pain medication at the earliest symptoms of a vasoocclusive crisis.
  • Patients on a chronic transfusion program must adhere to iron chelation therapy.
  • Social services, occupational therapy, and counseling are essential elements in the long-term management of patients with SCD.

Inpatient & Outpatient Medications

  • Hydroxyurea should be continued for patients who are selected to receive this drug.
  • A long-acting NSAID is given to patients with chronic pain.
  • A weak opioid, such as codeine or hydrocodone, is given to some patients with chronic pain.
  • Folic acid is given to all patients.

Deterrence/Prevention

  • Forty-four US states now screen for Hb S at birth. This method of case finding allows institution of early treatment and control.
  • Prenatal diagnosis is also available. The laboratory procedures employed in prenatal testing are sensitive and rapid. Prenatal testing must be accompanied with genetic and psychological counseling.
    • DNA prepared from a biopsy of chorionic villi can be obtained at 8-12 weeks' gestation. This low-risk procedure is safe.
    • DNA from amniotic fluid cells can be examined at 16 weeks' gestation.
    • Investigational attempts are ongoing to isolate fetal cells from maternal blood for DNA assay.

Complications

  • Acute chest syndrome is managed with analgesics, oxygen, antibiotics, and transfusion.
    • The aim is to reduce the concentration of Hb S to less than 30%.
    • If the hematocrit is 30% or higher, an exchange transfusion must be performed. This can be done by removing 1 unit of blood, transfusing 1 unit, and repeating the process or by using a continuous-flow phoresis machine.
  • Strokes are managed with general support and transfusion.
    • The aim is to lower the concentration of Hb S to less than 30%.
    • An exchange transfusion may be required.
    • Because of the devastating neurological defect that may result, emphasis is placed on prevention.
      • Children should be tested using transcranial Doppler ultrasonography.
      • Those with increased flow are at risk for stroke and should be considered for a chronic transfusion program.
      • As patients grow into adulthood, the transfusion frequency may be decreased, but whether it can be discontinued remains unclear.
  • Leg ulcers are treated with debridement and antibiotics.
    • Zinc oxide occlusive dressing (Unna boot) and leg elevation are employed.
    • Transfusion may accelerate healing.
    • Skin grafting may be necessary in recalcitrant cases.
  • Avascular necrosis of the femoral and humeral heads is treated by not bearing weight at the site.
    • The patient may need to make career and lifestyle adjustments.
    • Occupational retraining and physical therapy may be needed.
    • In many cases, surgical intervention with hip replacement or other orthopedic procedures are needed.
  • Chronic renal failure is managed with dialysis in the same manner as end-stage renal disease due to other causes.
  • Priapism is treated with analgesics and hydration. Persistent priapism may require surgical evacuation of the penile corpora. If impotence results, insertion of a penile prosthesis is indicated.
  • Chronic use of opioids leads to tolerance and habituation. Periodic attempts at withdrawal should be undertaken.
    • Drug addiction is uncommon among patients with SCD.
    • When drug addiction with substance abuse is present, difficult management problems ensue that require a team approach involving counselors, substance abuse specialists, hematologists, and pain management experts.

Prognosis

  • Because this is a lifelong disease, prognosis is guarded. The goal is to achieve a normal life span with minimal morbidity.
  • As therapy improves, the prognosis also improves.

Patient Education

  • Patients must be educated about the nature of their disease. They must be able to do the following:
    • Recognize the earliest signs of a vasoocclusive crisis and seek help.
    • Treat all infections promptly.
    • Identify environmental hazards that may precipitate a crisis.
  • Patients on hydroxyurea must be educated on the importance of regular follow-up with blood counts.
  • Patients (including asymptomatic heterozygous carriers) should understand the genetic basis of the disease, be educated about prenatal diagnosis, and know that genetic counseling is available.
  • For excellent patient education resources, see eMedicine's patient education articles Sickle Cell Crisis and Anemia.

Miscellaneous

Special Concerns

  • Acute abdomen must be ruled out during painful abdominal vasoocclusive crisis.
  • Sickling variants and sickle trait must be distinguished from Hb S disease.
    • Hb S exists in combination with other hemoglobins in a double heterozygous state. The clinically important diseases involved, observed in patients in the United States, are Hb C and beta thalassemia.
    • Hb SC disease is a milder sickling disorder. It is present in 1 in 1100 African Americans.
      • In the Hb C mutation, lysine replaces glutamic acid in position 6 on the beta chain. Hb A is not present. The RBCs contain 50% Hb S and 50% Hb C.
      • Anemia is much milder, with Hb levels of 11 g/dL or higher.
      • Symptoms are similar to SCD but less frequent and less severe.
      • Splenomegaly often persists well into adult life. Aseptic necrosis of the femoral head is not more common than in SCD.
      • A proliferative retinopathy may lead to progressive loss of vision.
      • The diagnosis is made with Hb electrophoresis. The peripheral blood smear may have some sickled cells and a high proportion of target cells. In addition, microcytic, dehydrated, dense RBCs are seen. These may contain crystal-like condensations.
      • Treatment and management strategies are similar to those employed in Hb S disease.
    • In Hb S-beta 0 thalassemia, only Hb S is found on electrophoresis. Hb A2 is elevated and splenomegaly usually is present. The clinical picture is similar to SCD but is slightly less severe. Management is similar to that for SCD.
    • In Hb S-beta+ thalassemia, Hb A is present, usually between 10% and 30%. The spleen is usually enlarged. It is otherwise similar to SCD but is a milder disease.
  • Sickle cell trait is the heterozygous carrier state of Hb S. These individuals have approximately 40% Hb S and 60% Hb A, less so with coexisting alpha-thalassemia trait.
    • People with sickle trait generally are well and have the following characteristics:
      • Normal life expectancy
      • Not at excessive risk for infection
      • Not subject to painful crisis under normal circumstances
      • No anemia
    • Nevertheless, providing genetic counseling to prospective parents with sickle cell trait is important.
    • Reports exist of excessive deaths under extreme conditions, such as military basic training involving strenuous exertion; however, this is very uncommon.
    • Similarly, isolated reports exist of organ infarction and crisis under unusual circumstances. Many of these patients lose urine-concentrating capacity. Painless hematuria may be present.
  • Hb S variants may occur as double heterozygotes with other Hb variants. These include Hb D, Hb E, and Hb O Arab. These are observed very infrequently in the United States, and information about them can be found in hematology texts.
 


More on Sickle Cell Anemia

Overview: Sickle Cell Anemia
Differential Diagnoses & Workup: Sickle Cell Anemia
Treatment & Medication: Sickle Cell Anemia
Follow-up: Sickle Cell Anemia
Multimedia: Sickle Cell Anemia
References
Further Reading
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Further Reading

Related eMedicine Topics

Clinical Trials
National Guideline Clearinghouse

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Keywords

sickle cell disease, hemoglobin SS disease, sickle cell trait, homozygous hemoglobin S disease, SCD, mutant hemoglobins, Hb S, Hb SS, Hb A, Hb SA, anemia, red blood cells, RBC, sickle shaped, vasoocclusive crisis, sickle cell crisis, hemoglobin sc disease, hemoglobin c disease, thalassemia, congenital hemolytic anemia, hemoglobinopathies

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Contributor Information and Disclosures

Author

Ariel Distenfeld, MD, Clinical Professor, Department of Medicine, New York University School of Medicine
Ariel Distenfeld, MD is a member of the following medical societies: American Academy of Hospice and Palliative Medicine, American College of Physicians-American Society of Internal Medicine, American Medical Association, American Society of Clinical Oncology, American Society of Hematology, International Society of Blood Transfusion, International Society of Hematology, Medical Society of the State of New York, and New York Academy of Sciences
Disclosure: Nothing to disclose.

Coauthor(s)

Ulrich Woermann, MD, Consulting Staff, Division of Instructional Media, Institute for Medical Education, University of Bern, Switzerland
Disclosure: Nothing to disclose.

Medical Editor

Wadie F Bahou, MD, Chief, Division of Hematology, Hematology/Oncology Fellowship Director, Professor, Department of Internal Medicine, State University of New York at Stony Brook
Wadie F Bahou, MD is a member of the following medical societies: American Society of Hematology
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Marcel E Conrad, MD is a member of the following medical societies: Alpha Omega Alpha, American Association for the Advancement of Science, American Association of Blood Banks, American Chemical Society, American College of Physicians, American Physiological Society, American Society for Clinical Investigation, American Society of Hematology, Association of American Physicians, Association of Military Surgeons of the US, International Society of Hematology, Society for Experimental Biology and Medicine, and Southwest Oncology Group
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Chief Editor

Emmanuel C Besa, MD, Professor, Department of Medicine, Division of Hematologic Malignancies, Kimmel Cancer Center, Thomas Jefferson University
Emmanuel C Besa, MD is a member of the following medical societies: American Association for Cancer Education, American College of Clinical Pharmacology, American Federation for Medical Research, American Society of Hematology, and New York Academy of Sciences
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