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Protocol - Priapism Impact

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Description

The Priapism Impact Profile (PIP) Questionnaire is a self-administered questionnaire containing 12 items that assess a participant’s experience with priapism over the past two weeks. Each item is rated on a Likert-style scale from 1 (None) to 7 (Very Extreme). This protocol was validated in male participants aged 18 and over with sickle cell disease.

Specific Instructions

The Sickle Cell Disease Genitourinary Working Group notes some questions in this assessment are sensitive. Investigators should provide a private space for completing assessments and to be prepared to offer appropriate support.

In contrast to questions on recurrent priapism from the Center for International Blood and Marrow Transplant Research (CIBMTR), the Priapism Impact Profile (PIP) Questionnaire captures the personal experience of priapism, including the impact on quality of life, and can be used to measure treatment efficacy. The questions on recurrent priapism from CIBMTR are more appropriate when recording previously collected data (e.g., from medical records) before and after bone marrow transplant.

Protocol

Priapism Impact Profile (PIP) Questionnaire

During the past 2 weeks:

Quality of Life

1. Worry about my overall health has been:
 1 [ ] None
 2 [ ] Minimal
 3 [ ] Slight
 4 [ ] Moderate
 5 [ ] Substantial
 6 [ ] Extreme
 7 [ ] Very Extreme

2. My distress about my priapism has been:
 1 [ ] None
 2 [ ] Minimal
 3 [ ] Slight
 4 [ ] Moderate
 5 [ ] Substantial
 6 [ ] Extreme
 7 [ ] Very Extreme

3. The effect of priapism on my daily activities has been:
 1 [ ] None
 2 [ ] Minimal
 3 [ ] Slight
 4 [ ] Moderate
 5 [ ] Substantial
 6 [ ] Extreme
 7 [ ] Very Extreme

4. The negative effect of priapism on my feelings have been:
 1 [ ] None
 2 [ ] Minimal
 3 [ ] Slight
 4 [ ] Moderate
 5 [ ] Substantial
 6 [ ] Extreme
 7 [ ] Very Extreme

Sexual Function

5. The effect of priapism on my sexual satisfaction has been:
 1 [ ] None
 2 [ ] Minimal
 3 [ ] Slight
 4 [ ] Moderate
 5 [ ] Substantial
 6 [ ] Extreme
 7 [ ] Very Extreme

6. The effect of priapism on my relationship with my partner has been:
 1 [ ] None
 2 [ ] Minimal
 3 [ ] Slight
 4 [ ] Moderate
 5 [ ] Substantial
 6 [ ] Extreme
 7 [ ] Very Extreme

7. The effect of priapism on my sexual confidence has been:
 1 [ ] None
 2 [ ] Minimal
 3 [ ] Slight
 4 [ ] Moderate
 5 [ ] Substantial
 6 [ ] Extreme
 7 [ ] Very Extreme

8. Having trouble getting an erection has been:
 1 [ ] None
 2 [ ] Minimal
 3 [ ] Slight
 4 [ ] Moderate
 5 [ ] Substantial
 6 [ ] Extreme
 7 [ ] Very Extreme

9. Problems with my sexual desire have been:
 1 [ ] None
 2 [ ] Minimal
 3 [ ] Slight
 4 [ ] Moderate
 5 [ ] Substantial
 6 [ ] Extreme
 7 [ ] Very Extreme

Physical Wellness

10. Physical discomfort caused by my priapism has been:
 1 [ ] None
 2 [ ] Minimal
 3 [ ] Slight
 4 [ ] Moderate
 5 [ ] Substantial
 6 [ ] Extreme
 7 [ ] Very Extreme

11. The level of pain in my penis caused by my priapism has been:
 1 [ ] None
 2 [ ] Minimal
 3 [ ] Slight
 4 [ ] Moderate
 5 [ ] Substantial
 6 [ ] Extreme
 7 [ ] Very Extreme

12. The abnormal shape of my penis caused by priapism has been:
 1 [ ] None
 2 [ ] Minimal
 3 [ ] Slight
 4 [ ] Moderate
 5 [ ] Substantial
 6 [ ] Extreme
 7 [ ] Very Extreme

Availability

Available

Personnel and Training Required

None

Equipment Needs

None

Requirements
Requirement CategoryRequired
Major equipment No
Specialized training No
Specialized requirements for biospecimen collection No
Average time of greater than 15 minutes in an unaffected individual No
Mode of Administration

Self-administered questionnaire

Lifestage

Adult

Participants

Adult males over 18 years of age

Selection Rationale

The Sickle Cell Disease Genitourinary Working Group chose the Priapism Impact Profile (PIP) Questionnaire because it assesses effects of priapism on a participant by characterizing their experiences and the impact on quality of life. It is also easy to administer and has been validated for sickle cell disease patients.

Language

English

Standards
StandardNameIDSource
Derived Variables

None

Process and Review

Not applicable

Protocol Name from Source

Priapism Impact Profile (PIP) Questionnaire

Source

Burnett, A. L., Anele, U. A., & Derogatis, L. R. (2015). Priapism impact profile questionnaire: Development and initial validation. Urology, 85(6), 1376–1381. https://doi.org/10.1016/j.urology.2015.02.025

General References

Morrison, B. F., Madden, W., Asnani, M., Sotimehin, A., Anele, U., Jing, Y., Trock, B. J., & Burnett, A. L. (2021). External validation of the priapism impact profile in a Jamaican cohort of patients with sickle cell disease. PloS One, 16(10), e0258560. https://doi.org/10.1371/journal.pone.0258560

Protocol ID

850602

Variables
Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
PX850602_Recurrent_Priapism_Impact_Abnormal_Shape_Penis
PX850602120000 The abnormal shape of my penis caused by more
priapism has been show less
N/A
PX850602_Recurrent_Priapism_Impact_Distress
PX850602020000 My distress about my priapism has been N/A
PX850602_Recurrent_Priapism_Impact_Effect_Daily_Activities
PX850602030000 The effect of priapism on my daily more
activities has been show less
N/A
PX850602_Recurrent_Priapism_Impact_Effect_Relationship_Partner
PX850602060000 The effect of priapism on my relationship more
with my partner has been show less
N/A
PX850602_Recurrent_Priapism_Impact_Effect_Sexual_Confidence
PX850602070000 The effect of priapism on my sexual more
confidence has been show less
N/A
PX850602_Recurrent_Priapism_Impact_Effect_Sexual_Satisfaction
PX850602050000 The effect of priapism on my sexual more
satisfaction has been show less
N/A
PX850602_Recurrent_Priapism_Impact_Level_Pain_Penis
PX850602110000 The level of pain in my penis caused by my more
priapism has been show less
N/A
PX850602_Recurrent_Priapism_Impact_Negative_Effect_Feelings
PX850602040000 The negative effect of priapism on my more
feelings have been show less
N/A
PX850602_Recurrent_Priapism_Impact_Physical_Discomfort
PX850602100000 Physical discomfort caused by my priapism has been N/A
PX850602_Recurrent_Priapism_Impact_Problems_Sexual_Desire
PX850602090000 Problems with my sexual desire have been N/A
PX850602_Recurrent_Priapism_Impact_Trouble_Getting_Erection
PX850602080000 Having trouble getting an erection has been N/A
PX850602_Recurrent_Priapism_Impact_Worry_Overall_Health
PX850602010000 Worry about my overall health has been N/A
Curative Therapies
Measure Name

Priapism

Release Date

August 15, 2023

Definition

Priapism is a medical emergency that is defined as prolonged erection of the penis, usually without sexual arousal.

Purpose

Priapism is a painful condition that can lead to penile ischemia and erectile dysfunction. Priapism, while uncommon in the general population, is a common complication of sickle cell disease (SCD) that results in an additional disease burden in the form of negative self-image effect such as sadness, embarrassment, and fear. Information is needed to evaluate outcomes, improve guidelines, and continue progress in the management of priapism.

Keywords

priapism impact, sickle cell disease, priapism, quality of life, sexual function, physical wellness,

Measure Protocols
Protocol ID Protocol Name
850601 Recurrent Priapism
850602 Priapism Impact
Publications

There are no publications listed for this protocol.