Infection Identified between Diagnosis and the Start of the Preparative Regimen

Specify the presence of all clinically significant infections identified between diagnosis and the start of the preparative regimen. Only report an organism once, even if it was identified at the same site in subsequent infections.

Questions 51: 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 52. If “no” continue with question 55.

1SCID Facts.” Severe Combined Immune Deficiency (SCID) Facts. Seattle Cancer Care Alliance, n.d. Web. 20 July 2012. .

Questions 52-53: 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 51. 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 52 and specify the organism in question 53. 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 52-53 and specify the other organism(s). Continue with question 54.

Question 54: If hepatitis was present, was it a prominent feature of ID?

If infectious hepatitis was present, indicate 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 55.

Question 55: 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 56. If “no” continue with question 59.

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 56-57: 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 55. 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 56 and specify the organism in question 57. 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 56-57 and specify the other organism(s). Continue with question 58.

Question 58: If meningitis/ encephalitis was present, was it a prominent feature of ID?

If meningitis / encephalitis was present, indicate 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 59.

Question 59: 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 60. If the recipient did not have pneumonia, indicate “no” and continue with question 63.

Questions 60-61: 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 59. 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 60 and specify the organism in question 61. 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 60-61 and specify the other organism(s). Continue with question 62.

Question 62: If pneumonia was present, was it a prominent feature of ID?

If pneumonia was present, indicate 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 63.

Question 63: 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 64. If “no” continue with question 67.

3 Guandalini S. Diarrhea. Medscape. Updated 4/10/14

Questions 64-65: 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 63. 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 64 and specify the organism in question 65. 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 64-65 and specify the other organism(s). Continue with question 66.

Question 66: If diarrhea was present, was it a prominent feature of ID?

If diarrhea was present, indicate if it was a prominent feature of ID. A prominent feature is generally well documented, closely followed, and treated. Continue with question 67.

Question 67: 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 68. If “no” continue with question 71.

Questions 68-69: 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 67. 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 68 and specify the organism in question 69. 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 68-69 and specify the other organism(s). Continue with question 70.

Question 70: If systemic infection was present, was it a prominent feature of ID?

If systemic infection was present, indicate 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 71.

Question 71: Other infection

Indicate if the recipient had an infection other than reported in questions 51-70. If “yes” continue with question 72. If “no” continue with question 76.

Questions 72-73: 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 71. 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 72 and specify the organism in question 73. 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 72-73 and specify the other organism(s). Continue with question 74.

Question 74: Specify other infection site

Specify the site of the infection reported in question 71. Continue with question 75.

Question 75: If other infection was present, was it a prominent feature of ID?

If other infection was present, indicate if it was a prominent feature of ID. A prominent feature is generally well documented, closely followed, and treated. Continue with question 76.

Clinical Status between Diagnosis and the Preparative Regimen

Questions 76-115: Did the recipient experience any of the following clinical features (between diagnosis and prior to the preparative regimen)?

Depending on the immune deficiency, differing clinical features may be present. Indicate “yes” if the recipient has any of the clinical features listed on the form between diagnosis and the start of the preparative regimen and specify the feature in questions 77-115. Do not leave any feature blank. If the recipient does not have any of the clinical features listed, select “no” and continue with question 116.

Q Feature Is the feature present?
77 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.
79 Bone abnormalities Short bones may be found in certain immune deficiencies such as cartilage hair hypoplasia (CHH). Lesions on bones may also be present as a result of infection.
81 Edema Swelling caused by excess fluid in tissue.
83 Eosinophilia Higher than normal eosinophils in the peripheral blood. > 500 cells/µL
85 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
87 Graft-versus-host disease due to blood transfusion Transfusion associated GVHD occurs when blood transfusion derived T cells attack host cells. Immunocompromised individuals are at higher risk for TA-GHVD because their immune system cannot destroy donor T cells.
89 Graft-versus-host disease due to maternal engraftment Occurs when maternally engrafted T cells attack the host cells.
91 Growth hormone deficiency Growth Hormone (GH) is a hormone that stimulates cellular reproduction and growth. Deficiencies in GH are often diagnosed by pediatric endocrinologists.
93 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.
95 Hepatosplenomegaly Enlargement of the liver and/or spleen.
97 Hypoproteinemia Abnormally low levels of protein in peripheral blood.
99 Lymphoproliferative disease Lymphoproliferative diseases are characterized by excessive production of lymphocytes.
101 Maternal T-cell engraftment Maternal T-cell engraftment is characterized by the presence of circulating maternal T-cells in the patient’s blood, which may cause GVHD, though GVHD is not always a feature of engrafted maternal T-cells.
103 Microcephaly Microcephaly is characterized by a head circumference that is significantly small for age (≥ 3 standard deviations below mean for age/sex). Motor function and developmental delays may result.
105 Neutropenia ANC < 1.0 × 109/L
107 Skin rash Rashes of the skin may be occur for a variety of reason, including but not limited to: GVHD, infection, or autoimmune conditions.
109 Thrombocytopenia ( < 100 ×109/L) Platelets < 100 × 109/L
111 Warts Warts are caused by infection by Human Papilloma Virus
113 & 115 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 clinical feature that was reported as present was a prominent part of their disease.

Last modified: Aug 28, 2015

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