Q93 – 104: Other Symptoms

*Priapism:
Did one or more episodes of priapism occur? Is applicable to only biologically male recipients.

Questions 93 – 95: Did one or more episodes of priapism occur? (to be answered for males only)

Priapism is defined as prolonged erection of the penis, usually without sexual arousal.

Report Yes if the recipient experienced one or more episodes of priapism in the current reporting period. If the recipient did not experience any episodes of priapism in the current reporting period or if no information is available to determine if priapism occurred, report No or Unknown, respectively.

If Yes, specify the number of episodes occurring in the current reporting period and the date of the last episode.

If the exact date is not known report an estimated date. Refer to General Instructions, Guidelines for Completing Forms for information about reporting estimated dates.

Question 96: Has a new onset of sickle cell retinopathy developed?

Sickle cell retinopathy is an ocular manifestation of sickle cell disorders characterized by ocular damage due to trapping of sickle-shaped cells in the small blood vessels in various structures of the eye. Diagnosis of sickle cell retinopathy should be made by an ophthalmologist and is typically documented within the recipient’s medical record. Seek physician clarification if it is unclear if there was a new onset of sickle cell retinopathy in the current reporting period.

Indicate Yes if the recipient developed a new onset of sickle cell retinopathy since the date of last report.

Report No in in the following scenarios:

• There was not a new onset of sickle cell retinopathy since the date of last report.
• Sickle cell retinopathy was diagnosed in a prior to HCT or in a prior reporting period, resolved, and developed again in the current reporting period.
• Sickle cell retinopathy was diagnosed in a prior reporting period and persisted into the current reporting period.

If documentation is not clear or is not available to determine if sickle retinopathy occurred in the current reporting period, report Unknown.

Question 97: Have chronic leg ulcers developed?

Chronic leg ulcers are defined as a defect of the skin below the level of the knee persisting for more than six weeks with no tendency to heal after three or more months.

Indicate whether the recipient developed chronic leg ulcers since the date of last report. If chronic leg ulcers were diagnosed in the current reporting period (first onset), report Yes.

Report No in the following scenarios:

• Chronic leg ulcers did not develop in the current reporting period.
• Chronic leg ulcers developed prior to HCT or in a prior reporting period and persisted into the current reporting period.
• Chronic leg ulcers developed in a prior reporting period, resolved, and developed again in the current reporting period.
  

If no information is available to determine if chronic leg ulcers developed in the current reporting period, select Unknown.

Question 98: Is there a new diagnosis of asthma or a reactive airway disease?

Asthma is a condition where the airways narrow, swell, and produce extra mucus which results in breathing difficulty, coughing, wheezing, and shortness of breath. Reactive airway disease (RAD) is a general term used to describe coughing, wheezing or shortness of breath when a specific diagnosis has not been made (i.e., asthma, chronic obstructive pulmonary disease, etc.).

Indicate if there was a new diagnosis of asthma or a reactive airway disease since the date of last report.

If the recipient was clinically diagnosed with asthma or reactive airway disease in the current reporting period, select Yes.

Report No in the following scenarios:

• There was not a diagnosis of asthma or reactive airway disease in the current reporting period.
• Asthma and reactive airway disease were diagnosed in a prior reporting period.
  

If there is no information available to determine if there was a diagnosis of asthma or reactive airway disease in the current reporting period, select Unknown.

Question 99: Has a venous thrombosis embolism developed?

Venous thrombosis embolism, also called a venous thromboembolism, is a condition characterized by formation of blood clots in deep veins of the body. These clots typically manifest in the lower leg, thigh, or pelvis, but have been noted to occur in the arm.

Indicate if the recipient developed venous thrombosis embolism since the date of last report. If the recipient developed a venous thrombosis embolism, report Yes.

Report No in any of the following scenarios:

• A venous thrombosis did not develop in the current reporting period.
• A venous thrombosis developed in a prior reporting period and persisted into the current reporting period.
  

If no information is available to determine if a venous thrombosis embolism developed in the current reporting period, select Unknown.

Question 100: Was it associated with an indwelling (central line) catheter?

There are several types of long term indwelling central line catheters used to access veins. Examples include Hickman, Broviac, PICC, etc. which carry a risk of developing a blood clot.

Indicate Yes or No if the venous thrombosis embolism was associated with the recipient’s indwelling catheter.

Question 101: Has a pulmonary embolism developed?

Pulmonary embolism is a medical condition where a blood clot gets lodged in an artery of the lung, blocking blood flow to that area.

Indicate if the recipient developed a pulmonary embolism since the date of last report. If the recipient developed a pulmonary embolism in the current reporting period, select Yes.

Report No in any of the following scenarios:

• A pulmonary embolism did not develop in the current reporting period.
• A pulmonary embolism developed in a prior reporting period and persisted into the current reporting period.
  

If information is available to determine if a pulmonary embolism developed in the current reporting period, select Unknown.

Question 102: Was it associated with an indwelling (central line) catheter?

There are several types of long term indwelling central line catheters used to access veins. Examples include Hickman, Broviac, PICC, etc. which carry a risk of developing a blood clot.

Indicate Yes or No if the pulmonary embolism was associated with the recipient’s indwelling catheter.

Question 103: Number of splenic sequestration events

The diagnosis of a splenic sequestration crisis is usually clinical using patient history, physical exam, and accompanying lab values. This typically requires seeking medical care for urgent diagnosis and management. An event is defined as the documentation of this diagnosis after seeking medical care either in clinic, emergency department or hospitalization

Question 104: Date of last event

Report the date of the last splenic sequestration event requiring hospitalization or treatment in the current reporting period. This information is typically documented within the progress notes.

Section Updates:

Question Number	Date of Change	Add/Remove/Modify	Description	Reasoning (If applicable)
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