Abstract
Study design:
Questionnaire development, validation and completion.
Objectives:
Develop comprehensive survey of sexuality issues including validated self-report versions of the International Spinal Cord Injury male sexual function and female sexual and reproductive function basic data sets (SR-iSCI-sexual function).
Setting:
People with spinal cord damage (SCD) living in the community, Australia from August 2013 to June 2014.
Methods:
An iterative process involving rehabilitation medicine clinicians, a nurse specialising in sexuality issues in SCD and people with SCD who developed a comprehensive survey that included the SR-iSCI-sexual function. Participants recruitment through spinal rehabilitation review clinic and community organisations that support people with SCD.
Results:
Surveys completed by 154 people. Most were male (n=101, 65.6%). Respondents’ median age was 50 years (interquartile range (IQR) 38–58), and they were a median of 10 years (IQR 4–20) after the onset of SCD. Sexual problems unrelated to SCD were reported by 12 (8%) respondents, and 114 (n=75.5%) reported sexual problems because of SCD. Orgasms were much less likely (χ2=13.1, P=0.006) to be normal in males (n=5, 5%) compared with females (n=11, 22%). Males had significantly worse (χ2=26.0, P=0.001) psychogenic genital functioning (normal n=9, 9%) than females (normal n=13, 26%) and worse (χ2=10.8, P=0.013) reflex genital functioning. Normal ejaculation was reported in only three (3%) men. Most (n=26, 52%) women reported reduced or absent menstruation pattern since SCD.
Conclusion:
The SR-iSCI-sexual function provides a useful tool for researchers and clinicians to collect information regarding patient-reported sexual functioning after SCD and to facilitate comparative studies.
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Acknowledgements
The following people are thanked for their assistance with the development of the SR-iSCI-sexual function data sets: Lynne Panayiotis, Georgina Fiorentino, Mark Hanson, Mike Short, anonymous, anonymous and Vanessa Hamilton (Sexual Health Nurse Consultant, Austin Health, Melbourne, Australia). Merilyn Seddon (Monash University) and the following organisations are thanked for their assistance with distribution of the survey that included the SR-iSCI-sexual function data sets: AQA (Victoria), Spinal Injuries Association (Queensland), Spinal Cord Injuries Australia (New South Wales), Paraplegic-Quadriplegic Association of WA, ParaQuad NSW, Paraplegic and Quadriplegic Association of South Australia, Spinal Cord Injury Network (Australia). We thank all the participants who completed the survey. Dr Daniel E Rohe, Mayo Clinic, Rochester, MN, USA, is thanked for providing helpful suggestions on an earlier draft of the manuscript. Some of the information in the manuscript was presented at the 53rd ISCoS Annual Scientific Meeting, Maastricht, The Netherlands, on 2 September 2014.
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Appendix 1
Appendix 1
Self-report versions of the International Spinal Cord Society male sexual function and female sexual and reproductive function data sets
QUESTIONS IN BOTH MALE AND FEMALE DATA SETS
Do you have any sexual problems or issues unrelated to your spinal cord damage?
__ Yes, please specify ____________________
__ No
__ Unsure
Do you have any sexual problems or issues due to your spinal cord damage?
__ Yes
__ No
__ Unsure
How would you rate your ability to have an orgasm?
__ Normal
__ Reduced/altered
__ Absent
__ Unknown
MALES DATA SET
How would you rate your ability to have psychogenic erections? (A psychogenic erection is an erection that occurs without any physical touching. This may occur if a man thinks of something sexual or sometimes it just happens on its own)?
__ Normal
__ Reduced/altered
__ Absent
__ Unknown
How would you rate your ability to have reflex erections (This is an erection that occurs because of physical stimulation or touch)?
__ Normal
__ Reduced/altered
__ Absent
__ Unknown
How would you rate your ability to ejaculate?
__ Normal
__ Reduced/altered
__ Absent
__ Unknown
FEMALES DATA SET
How would you rate your ability to have psychogenic genital arousal (This is when genital changes and lubrication occur without any physical touching. This may occur if a woman thinks of something sexual or sometimes it just happens on its own)?
__ Normal
__ Reduced/altered
__ Absent
__ Unknown
How would you rate your ability to have reflex genital arousal (This is when genital changes and lubrication occur because of physical stimulation or touch)?
__ Normal
__ Reduced/altered
__ Absent
__ Unknown
How would you rate your current menstruation pattern?
__ Normal
__ Reduced/altered
__ Absent
__ Unknown
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New, P., Currie, K. Development of a comprehensive survey of sexuality issues including a self-report version of the International Spinal Cord Injury sexual function basic data sets. Spinal Cord 54, 584–591 (2016). https://doi.org/10.1038/sc.2015.216
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DOI: https://doi.org/10.1038/sc.2015.216
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