Infections Identified Post-HCT
Specify the presence of all clinically significant infections identified since the date of the last report. Only report an organism once, even if it was identified at the same site in subsequent infections.
Question 44: Hepatitis
Hepatitis refers to inflammation (acute or chronic) of the liver with infectious or noninfectious etiologies. Hepatitis symptoms can include abdominal pain, jaundice, nausea, and vomiting. Laboratory tests such as aminotransferase (ALT/AST) and bilirubin measurements may be performed to monitor hepatic function. These lab values are frequently elevated in patients with hepatitis. Infectious causes of hepatitis in children with immune deficiencies include, but are not limited to hepatitis A virus, hepatitis B virus, hepatitis C virus, and adenovirus.1
Indicate if the recipient developed infectious hepatitis. If “yes” continue with question 45. If “no” continue with question 48.
1 “SCID Facts.” Severe Combined Immune Deficiency (SCID) Facts. Seattle Cancer Care Alliance, n.d. Web. 20 July 2012. .
Questions 45-46: Hepatitis: Organism(s)
Select the identified or suspected infectious organism as reported on the microbiology report, laboratory report, or other physician documentation causing the hepatitis reported in question 44. If the organism was identified but is not listed, select “other chlamydia, specify,” “other mycobacterium, specify,” “other bacteria, specify,” “other fungus, specify,” “other aspergillus, specify,” “other virus, specify,” or “other parasite, specify” as appropriate for question 45 and specify the organism in question 46. If no organism was identified select the “No organism identified” option from the bottom of the list. If multiple organisms were identified, add additional instances for questions 45-46 and specify the other organism(s). Continue with question 47.
Question 47: If hepatitis was present, was it a prominent feature of ID?
If infectious hepatitis was present, indicate “yes” if it was a prominent feature of ID. A prominent feature is related to the immune deficiency, generally well documented, closely followed, and treated. Continue with question 48.
Question 48: Meningitis / encephalitis
Meningitis is an inflammation of the meninges, membranes encasing the central nervous system. Encephalitis is inflammation of the brain tissue itself. Meningitis and encephalitis may co-occur as meningoencephalitis. Common symptoms include headache, lethargy, confusion, fever, neck stiffness, and cranial nerve defects. Infectious causes of meningitis/encephalitis include, but are not limited to Streptococcus pneumoniae, Neisseria meningitidis, Haemophilus influenzae, enteroviruses, herpes simplex virus, Cryptococcus, and Histoplasmosis.2
Indicate if the recipient developed infectious meningitis / encephalitis. If “yes” continue with question 49. If “no” continue with question 52.
2 “Meningitis and Encephalitis Fact Sheet.” National Institute of Neurological Disorders and Stroke (NINDS). National Institutes of Health, 16 Feb. 2011. Web. 20 July 2012. http://www.ninds.nih.gov/disorders/encephalitis_meningitis/ detail_encephalitis_meningitis.htm & “Meningitis.” Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, 15 Mar. 2012. Web. 20 July 2012. http://www.cdc.gov/meningitis/index.html
Questions 49-50: Meningitis/ encephalitis: Organism(s)
Select the identified or suspected infectious organism as reported on the microbiology report, laboratory report, or other physician documentation causing the meningitis / encephalitis reported in question 48. If the organism was identified but is not listed, select “other chlamydia, specify,” “other mycobacterium, specify,” “other bacteria, specify,” “other fungus, specify,” “other aspergillus, specify,” “other virus, specify,” or “other parasite, specify” as appropriate for question 49 and specify the organism in question 50. If no organism was identified select the “No organism identified” option from the bottom of the list. If multiple organisms were identified, add additional instances for questions 49-50 and specify the other organism(s). Continue with question 51.
Question 51: If meningitis/ encephalitis was present, was it a prominent feature of ID?
If meningitis / encephalitis was present, indicate “yes” if it was a prominent feature of ID. A prominent feature is related to the immune deficiency, generally well documented, closely followed, and treated. Continue with question 52.
Question 52: Pneumonia
Pneumonia is a respiratory condition due to lung infection. Symptoms may include fever, cough, and difficulty breathing. Infectious causes of pneumonia include, but are not limited to pneumocystic jirovecii (PCP, PJP), cytomegalovirus, and adenovirus.
Indicate “yes” if the recipient developed infectious pneumonia and continue with question 53. If the recipient did not have pneumonia, indicate “no” and continue with question 56.
Questions 53-54: Pneumonia: Organism(s)
Select the identified or suspected infectious organism as reported on the microbiology report, laboratory report, or other physician documentation causing the pneumonia reported in question 52. If the organism was identified but is not listed, select “other chlamydia, specify,” “other mycobacterium, specify,” “other bacteria, specify,” “other fungus, specify,” “other aspergillus, specify,” “other virus, specify,” or “other parasite, specify” as appropriate for question 53 and specify the organism in question 54. If no organism was identified select the “No organism identified” option from the bottom of the list. If multiple organisms were identified, add additional instances for questions 53-54 and specify the other organism(s). Continue with question 55.
Question 55: If pneumonia was present, was it a prominent feature of ID?
If pneumonia was present, indicate “yes” if it was a prominent feature of ID. A prominent feature is related to the immune deficiency, generally well documented, closely followed, and treated. Continue with question 56.
Question 56: Severe or protracted diarrhea
Protracted diarrhea (>10g/kg/24hrs) refers to three or more loose stools per day lasting longer than fourteen days.3 Indicate whether the recipient had severe or protracted diarrhea. If “yes” continue with question 57. If “no” continue with question 60.
3 Guandalini S. Diarrhea. Medscape. Updated 4/10/14
Questions 57-58: Diarrhea: Organism(s)
Select the identified or suspected infectious organism as reported on the microbiology report, laboratory report, or other physician documentation causing the diarrhea reported in question 56. If the organism was identified but is not listed, select “other chlamydia, specify,” “other mycobacterium, specify,” “other bacteria, specify,” “other fungus, specify,” “other aspergillus, specify,” “other virus, specify,” or “other parasite, specify” as appropriate for question 57 and specify the organism in question 58. If no organism was identified select the “No organism identified” option from the bottom of the list. If multiple organisms were identified, add additional instances for questions 57-58 and specify the other organism(s). Continue with question 59.
Question 59: If diarrhea was present, was it a prominent feature of ID?
If diarrhea was present, indicate “yes” if it was a prominent feature of ID. A prominent feature is related to the immune deficiency, generally well documented, closely followed, and treated. Continue with question 60.
Question 60: Systemic infection
A systemic infection is an infection isolated at 3 or more sites. Indicate whether the recipient had systemic infection. If “yes” continue with question 61. If “no” continue with question 64.
Questions 61-62: Systemic infection: Organism(s)
Select the identified or suspected infectious organism as reported on the microbiology report, laboratory report, or other physician documentation causing the systemic infection reported in question 60. If the organism was identified but is not listed, select “other chlamydia, specify,” “other mycobacterium, specify,” “other bacteria, specify,” “other fungus, specify,” “other aspergillus, specify,” “other virus, specify,” or “other parasite, specify” as appropriate for question 61 and specify the organism in question 62. If no organism was identified select the “No organism identified” option from the bottom of the list. If multiple organisms were identified, add additional instances for questions 61-62 and specify the other organism(s). Continue with question 63.
Question 63: If systemic infection was present, was it a prominent feature of ID?
If systemic infection was present, indicate “yes” if it was a prominent feature of ID. A prominent feature is related to the immune deficiency, generally well documented, closely followed, and treated. Continue with question 64.
Question 64: Other infection
Indicate if the recipient had an infection other than reported in questions 44-63. If “yes” continue with question 65. If “no” continue with question 69.
Questions 65-66: Other infection: Organism(s)
Select the identified or suspected infectious organism as reported on the microbiology report, laboratory report, or other physician documentation causing the infection reported in question 64. If the organism was identified but is not listed, select “other chlamydia, specify,” “other mycobacterium, specify,” “other bacteria, specify,” “other fungus, specify,” “other aspergillus, specify,” “other virus, specify,” or “other parasite, specify” as appropriate for question 65 and specify the organism in question 66. If no organism was identified select the “No organism identified” option from the bottom of the list. If multiple organisms were identified, add additional instances for questions 65-66 and specify the other organism(s). Continue with question 67.
Question 67: Specify other infection site
Specify the site of the infection reported in question 64. Continue with question 68.
Question 68: If other infection was present, was it a prominent feature of ID?
If other infection was present, indicate “yes” if it was a prominent feature of ID. A prominent feature is related to the immune deficiency, generally well documented, closely followed, and treated. Continue with question 69
Clinical Status Post-HCT
Question 69: Did the recipient experience any of the following clinical features (since the date of last report)?
Depending on the immune deficiency, differing clinical features may be present. Indicate “yes” if the recipient has had any of the clinical features listed on the form since the date of the last report and specify the feature in questions 70-92. Do not leave any feature blank. If the recipient does not have any of the clinical features listed, select “no” and continue with question 93.
| Q | Feature | Is the feature present? |
|---|---|---|
| 70 | Autoimmune hemolytic anemia | Autoimmune hemolytic anemia results in a decrease in circulating healthy red blood cells due to the development of immunity against and subsequent destruction of one’s own red blood cells. |
| 72 | Failure to thrive (weight <5th percentile) | Failure to thrive describes a weight that is below the 5th percentile per age or corrected age for premature infants <12 months |
| 74 | Acute graft-versus-host disease | Acute GVHD occurs when donor immune cells attack recipient tissues post-transplant. Typical presentations of acute GVHD are early post-transplant in the skin, liver, and gastrointestinal tract. |
| 76 | Chronic graft-versus-host disease | Chronic GVHD occurs when donor cells attack recipient tissues post-transplant with features distinct from acute GVHD. Affected tissues include, but are not limited to: skin, liver, mouth, eyes, lungs, etc. |
| 78 | Growth hormone deficiency | Growth Hormone (GH) is a hormone that stimulates cellular reproduction and growth. Deficiencies in GH are often diagnosed by pediatric endocrinologists. |
| 80 | Growth retardation (height <5th percentile) | Growth retardation is characterized by a height below the 5th percentile for age or corrected age for premature infants <12 months. |
| 82 | Lymphoproliferative disease | Lymphoproliferative diseases are characterized by excessive production of lymphocytes. |
| 84 | Thrombotic thrombocytopenic purpura (TTP) | TTP is a coagulation disorder in which clots form in the small vessels. It is characterized by microangiopathic hemolysis, thrombocytopenia, and neurological changes. |
| 86 | Veno-occlusive disease (VOD) | Veno-occlusive disease, or sinusoidal occlusive syndrome occur when the veins of the liver are obstructed. VOD consists of endothelial damage, micro thrombosis of the hepatic venules and sinusoidal fibrosis |
| 88 | Warts | Warts are caused by infection by Human Papilloma Virus. |
| 90 & 92 | Other clinical features | Other clinical features may include, but are not limited to: deafness, lung or liver manifestations, and cardiac issues when linked to the immune deficiency |
Is [the clinical feature] prominent?
A prominent feature is generally well documented, closely followed, and treated. Select “yes” if the reported clinical feature was a prominent part of their immune deficiency.
Question 93: Did the recipient receive parenteral nutrition (since the date of last report)?
Parenteral nutrition is given to the recipients intravenously rather than through the digestive system. Parenteral nutrition contains the carbohydrates, proteins, fats, electrolytes, and other components needed for survival. The use of parenteral nutrition to deliver all required nutrients is called total parenteral nutrition (TPN).
Indicate “yes” if the recipient received parenteral nutrition since the date of the last report. If the recipient did not receive parenteral nutrition, select “no.”
Question 94: Did the recipient receive mechanical ventilation (since the date of last report)?
Mechanical ventilation can occur as both an endotracheal tube and ventilator, or as a BIPAP machine with a tight fitting mask in continuous use. The one exception to BIPAP is CPAP used for sleep apnea, which generally involves overnight use only for patients with documented sleep apnea. Therefore, do not report a CPAP used for sleep apnea, as it does not have the same implications as other forms of mechanical ventilation.
Indications for mechanical ventilation include, but are not limited to:
- Apnea with respiratory arrest (excludes sleep apnea)
- Acute lung injury
- Vital capacity < 15 mL/kg
- Chronic obstructive pulmonary disease (COPD)
- Clinical deterioration
- Respiratory muscle fatigue
- Obtundation or coma
- Hypotension
- Tachypnea or bradypnea
If the recipient was placed on mechanical ventilation at any time since the date of the last report check “yes.” If the recipient does not have a history of mechanical ventilation during the time period, check “no.”
Section Updates:
| Question Number | Date of Change | Add/Remove/Modify | Description | Reasoning (If applicable) |
|---|---|---|---|---|
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