Protocol - Priapism Impact
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.
Availability
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
Personnel and Training Required
None
Equipment Needs
None
Requirements
| Requirement Category | Required |
|---|---|
| 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
| Standard | Name | ID | Source |
|---|
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 ID | Variable Description | dbGaP Mapping | |
|---|---|---|---|---|
| PX850602_Recurrent_Priapism_Impact_Abnormal_Shape_Penis | ||||
| PX850602120000 | The abnormal shape of my penis caused by more | 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 | N/A | ||
| PX850602_Recurrent_Priapism_Impact_Effect_Relationship_Partner | ||||
| PX850602060000 | The effect of priapism on my relationship more | N/A | ||
| PX850602_Recurrent_Priapism_Impact_Effect_Sexual_Confidence | ||||
| PX850602070000 | The effect of priapism on my sexual more | N/A | ||
| PX850602_Recurrent_Priapism_Impact_Effect_Sexual_Satisfaction | ||||
| PX850602050000 | The effect of priapism on my sexual more | N/A | ||
| PX850602_Recurrent_Priapism_Impact_Level_Pain_Penis | ||||
| PX850602110000 | The level of pain in my penis caused by my more | N/A | ||
| PX850602_Recurrent_Priapism_Impact_Negative_Effect_Feelings | ||||
| PX850602040000 | The negative effect of priapism on my more | 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 | ||
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
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.