Question 77: Specify co-existing diseases or organ impairments any time prior to start of preparative regimen
Indicate if the recipient developed any of the co-existing diseases or organ impairments listed below at any time prior to the start of the preparative regimen. Include any impairments that resolved prior to the preparative regimen and did not recur. Select all that apply.
- Amenorrhea: Absence of menstruation
- Cardiomyopathy: A disease of the heart muscle that makes it more difficult for the heart to pump blood to the rest of the body
- *Cholelithiasis: Presence of one or more gallstones in the gallbladder
- Growth hormone deficiency / short stature: A condition in which the body does not produce enough growth hormone / a reduced overall rate of growth.
- Hypersplenism: Overactive spleen. Diagnosis is typically based on a physician’s exam (checking for splenomegaly), a CBC to assess the concentration of red and white blood cells, and / or an ultrasound, measuring the size of the spleen.
- Hypogonadism / Gonadal dysfunction: A condition where there is a hyperfunction of the gonads. It can manifest as precocious puberty and is caused by abnormally high levels of testosterone or estrogen, crucial hormones for sexual development.
- Hypothyroidism requiring replacement therapy: Decreased activity of the thyroid gland. Diagnosis of hypothyroidism includes high levels of thyroid-stimulating hormone (TSH). Symptoms of hypothyroidism include fatigue, depression, weakness, weight gain, musculoskeletal pain, decreased taste, hoarseness, and / or puffy face.
- Osteonecrosis: Flow to part of a bone is disrupted. This results in death of bone tissue, and the bone can eventually break down and the joint will collapse.
- Osteopathies (porosis, penia): Includes osteoporosis or osteopenia. Osteopathies should be reported if osteopenia or osteoporosis is documented within the medical record by the physician or based on the Z or T-score. Osteopenia is defined as a Z or T-score between -1.0 and -2.0 by a DEXA or quantitative CT scan. Osteoporosis is defined as a Z or T-score less than -2.0 by a DEXA or quantitative CT scan.
- Pulmonary hypertension: Refers to elevated pulmonary arterial pressure and is diagnosed either by an echocardiogram or right heart catheterization.
- Retinal changes: Changes include but are not limited to macular degeneration, floaters, diabetic eye disease, retinal detachment, and retinitis pigmentosa.
- Thrombosis: Blood clot within the vein or artery.
If the recipient did not develop any of the co-existing diseases or organ impairments listed above at any time prior to the start of the preparative regimen, select None and continue with Were disease modifying therapies given?.
Question 78: Date of diagnosis
Report the diagnosis date of the co-existing disease or organ impairment. If the organ impairment occurred multiple time times prior to the start of the preparative regimen, report the co-existing disease or organ impairment once and the diagnosis date of the most recent occurrence. See the example below for additional information.
If the exact date is not known report an estimated date and check the Date estimated box. Refer to General Instructions, Guidelines for Completing Forms . for information about reporting estimated dates.
- Example A: A recipient developed a blood clot (thrombosis) on 1/15/2018 which resolved; however, the recipient developed another blood clot 8/20/2023. The recipient’s transplant was on 12/1/2023. The diagnosis date of the thrombosis should be reported as 8/20/2023 as this is the date of the most recent episode.
Question 79: Method used to assess osteopathies (report the most recent Z or T-score available. Z-scores are used in patients younger than or equal to 20 and T-scores in patients older than 20) (check all that apply)
Specify the method used to assess osteopathies prior to the start of the preparative regimen. Select all that apply.
If the osteopathy was not assessed prior to the start of the preparative regimen or is not known if assessed, select Unknown.
Questions 80 – 81: DEXA scan vertebral
Indicate if the vertebral Z-score by DEXA is known. If Known, report the Z or T-score. Select Negative value if the Z or T-score is a negative (i.e., Z-score is -1.0).
If multiple DEXA scans were performed prior to the start of the preparative regimen, report the most recent vertebral Z or T-score.
Questions 82 – 83: DEXA scan hip
Indicate if the hip Z-score by DEXA is known. If Known, report the Z or T-score. Select Negative value if the Z or T-score is a negative (i.e., Z-score is -1.0).
If multiple DEXA scans were performed prior to the start of the preparative regimen , report the most recent hip Z or T-score
Questions 84 – 85: Quantitative CT vertebral
Indicate if the vertebral Z-score by quantitative CT is known. If Known, report the Z or T-score. Select Negative value if the Z or T-score is a negative (i.e., Z-score is -1.0).
If multiple quantitative CT scans were performed prior to the start of the preparative regimen, report the most recent vertebral Z or T-score.
Questions 86 – 87: Quantitative CT hip
Indicate if the hip Z-score by quantitative CT is known. If Known, report the Z or T-score. Select Negative value if the Z or T-score is a negative (i.e., Z-score is -1.0).
If multiple quantitative CT scans were performed prior to the start of the preparative regimen, report the most recent hip Z or T-score.
Section Updates:
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