David
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- Apr 24, 2003
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- Cobourg
Your help participating in an online survey is needed.
The survey takes approximately 30 minutes to complete.
Please read the following to ensure you're comfortable with the subject content of the survey and meet the eligibility requirements.
This survey does not collect personally identifiable information and is completely anonymous.
Study Homepage: http://www.alssurvey.org/
Eligibility:
ALS participant
To be eligible you must:
Romantic partner of a person diagnosed with ALS
To be eligible you must:
Study Overview:
Carisa Bielecki and Ryan Howell, PhD, at San Francisco State University have developed a survey about sexuality in ALS. This study is IRB approved by SFSU. The goal of the survey is to learn more about sexuality in ALS and to improve the quality of life for persons with ALS and their romantic partner. The information gained through the survey will be used to evaluate sexual behavior, disease progression, quality of life, and to help foster ALS research. For persons to participate they do not have to currently be with a partner.
Study Duration:
The study will run tentatively until March 2010, depending on how many participants are enrolled after 3-6 months.
Study Abstract:
This study aims to determine when sexual satisfaction, subjective sexual well being, and quality of life for persons with ALS and their romantic partner/caregiver is likely to decline and the extent to which decline occurs, as compared with before date of onset. This is an anonymous online survey. Patients' disease status will be correlated with their sexual health status. Partners' health status will be correlated with their sexual health status. The patient's disease status will be assessed by the self reported ALSFRS-R and their sexual health status will be assessed by the Sexual Self Report Scale (developed by Dr. Wasner et al. in Sexuality in ALS and six sex/intimacy questions from the ALSQOL), subjective sexual well being (four questions developed by Dr. Laumann et al. in A Cross-National Study of Subjective Sexual Well Being .), and quality of life assessed by the Satisfaction with Life Scale (Diener). The partner's health status will be assessed by the CBI (Caregiver Burden Inventory) and their sexual health status will be assessed by the same questionnaires as patients.
Sexuality in people with amyotrophic lateral sclerosis has not been thoroughly researched. A person with ALS can continue to experience and express their sexuality. The disease does not directly, but indirectly interferes with sexual functioning (Wasner, Bold, Vollmer, Borasio, 2004). Sexuality influences a person's quality of life and should be regarded as a topic of concern for the patient and caregiver (WHO, 2002). Though the disease presents many complicated issues for the caregiver/romantic partner and patient to deal with, sexuality continues to be an issue of concern and significance to them and should be addressed accordingly.
The survey takes approximately 30 minutes to complete.
Please read the following to ensure you're comfortable with the subject content of the survey and meet the eligibility requirements.
This survey does not collect personally identifiable information and is completely anonymous.
Study Homepage: http://www.alssurvey.org/
Eligibility:
ALS participant
To be eligible you must:
- have a diagnosis of probable or definite ALS by a doctor,
- have seen two or more doctors regarding your symptoms of ALS,
- have been diagnosed with ALS by one or more doctors,
- have been diagnosed by a doctor who works at a MDA/ALS certified
- center, ALS Association certified center, clinic, or university, and
- be between 18 to 80 years of age.
- Click here to join the survey if you have been diagnosed with ALS.
Romantic partner of a person diagnosed with ALS
To be eligible you must:
- be between 18 to 80 years of age,
- have been in a relationship with a person who has ALS before he or she
- had any symptoms of weakness,
- have been in a relationship with a person who has ALS before he or she was diagnosed, and
- provide one or more hours of care or help for your partner per week.
- Click here to join the Romantic partner/caregiver of someone with ALS Survey.
Study Overview:
Carisa Bielecki and Ryan Howell, PhD, at San Francisco State University have developed a survey about sexuality in ALS. This study is IRB approved by SFSU. The goal of the survey is to learn more about sexuality in ALS and to improve the quality of life for persons with ALS and their romantic partner. The information gained through the survey will be used to evaluate sexual behavior, disease progression, quality of life, and to help foster ALS research. For persons to participate they do not have to currently be with a partner.
Study Duration:
The study will run tentatively until March 2010, depending on how many participants are enrolled after 3-6 months.
Study Abstract:
This study aims to determine when sexual satisfaction, subjective sexual well being, and quality of life for persons with ALS and their romantic partner/caregiver is likely to decline and the extent to which decline occurs, as compared with before date of onset. This is an anonymous online survey. Patients' disease status will be correlated with their sexual health status. Partners' health status will be correlated with their sexual health status. The patient's disease status will be assessed by the self reported ALSFRS-R and their sexual health status will be assessed by the Sexual Self Report Scale (developed by Dr. Wasner et al. in Sexuality in ALS and six sex/intimacy questions from the ALSQOL), subjective sexual well being (four questions developed by Dr. Laumann et al. in A Cross-National Study of Subjective Sexual Well Being .), and quality of life assessed by the Satisfaction with Life Scale (Diener). The partner's health status will be assessed by the CBI (Caregiver Burden Inventory) and their sexual health status will be assessed by the same questionnaires as patients.
Sexuality in people with amyotrophic lateral sclerosis has not been thoroughly researched. A person with ALS can continue to experience and express their sexuality. The disease does not directly, but indirectly interferes with sexual functioning (Wasner, Bold, Vollmer, Borasio, 2004). Sexuality influences a person's quality of life and should be regarded as a topic of concern for the patient and caregiver (WHO, 2002). Though the disease presents many complicated issues for the caregiver/romantic partner and patient to deal with, sexuality continues to be an issue of concern and significance to them and should be addressed accordingly.
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