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study of LC stigma, symptom severity, & quality of life


KatieB

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I’m attaching a letter from the Executive Director of LUNGevity to our constituents (you guys!) about the next phase of the University of California, San Francisco, survey on stigma and lung cancer.

We were kind enough to participate in the first phase of the survey last fall, and we recruited thousands of participants for UCSF.

They LOVE us!!!

Please take a moment and help out in this important study,

Thank you

KatieB

__________________________________________________________

April 1, 2010

Dearest LUNGevity Family Member:

We realize that attitudes and stigma can affect how lung cancer patients seek treatment, interact with people around them, and feel about themselves. A researcher at University of California, San Francisco is conducting an ongoing study of lung cancer stigma, symptom severity, and quality of life to better understand the needs of patients who have been diagnosed with lung cancer. If you have ever been diagnosed with lung cancer, please take 55-60 minutes to share your experiences. Please note you do not need to complete the survey in one sitting.

What will happen if I agree to take part in this research study?

1. You will be asked to complete a required CONSENT FORM, which allows UCSF to view your responses in our research survey.

2. Complete the demographic section and questionnaire on lung cancer stigma, which includes questions about your symptoms, sleep disturbance, self-esteem, anxiety, depression, and quality of life.

3. The QUESTIONNAIRE will take approximately 55-60 minutes to complete. There are 210 items to complete. We appreciate that this is a lot of questions and takes a considerable amount of time; lung cancer stigma is a serious and complicated subject that we are just beginning to recognize and understand. We need you to complete all 210 items in order for your responses to be used in our research. ONCE YOU START PLEASE CONSIDER FINISHING AND FILLING IN ALL ANSWERS; you can take breaks during the survey and complete it at your convenience, but completing it is required.

4. As a token of their appreciation, the University of California, San Francisco will send participants who complete the survey a $10 Target® gift card.

The more we understand, the better LUNGevity will be able to serve and support people affected by lung cancer. Take the survey by clicking

https://www.surveymonkey.com/s.aspx?sm= ... CEHTtw%3d&

Thank you so much for your time and consideration! We will use your responses to continue to improve the standard of care for lung cancer patients!

You may review the results of the first phase of the study here:

C:\Users\compusa\AppData\Local\Microsoft\Windows\Temporary Internet Files\Content.IE5\YE51EZ1N\CCC leadership 03 29 10.pptx

Questions about this message or the survey?

You may contact Janine Cataldo, RN, PhD at:

Address: 2 Koret Way, Room N611Q

Box 0610

San Francisco, CA 94143-0610

E-mail: Janine.cataldo@nursing.ucsf.edu

Phone: 415-476-4721

Thank you for your time and consideration. Together, we will cure lung cancer.

Sincerely,

Beth Ida Stern

Executive Director

bstern@lungevity.org

312.464.0716

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Thanks for the opportunity (and the gift card!) I just took this, but the answer sheet on question 15 on sleep did not work right - would only allow one answer in any column and since there were more rows than columns (and some columns were the right answer for multiple rows) I was not able to fully complete the survey. It took less time than estimated. Your mileage may vary.

(I did call to let them know and they said they would correct it.)

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I filled it out also - had the same problem with that question, I just continued on and since it accepted my survey I figured it went through. I had trouble answering a few questions that I felt assumed I was a smoker or at least only had answers that pertained to smokers, odd on a stigma survey. It really didn't take that long at all.

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Janet,

I hope you commented on that! I thought about that as well, but was so wrapped up in the problem on 15 that I forgot to mention it. "Yeah, thanks for making me feel bad by taking your survey..." I guess I could have just skipped those questions!

Stephanie

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I also took the survey. I had no problems with any of the questions, so it must have been fixed by the time I got to it. I also felt that it was geared towards smokers, which I felt was strange for a survey that was supposed to be assessing the stigma of Lung Cancer. It felt more like they wanted to keep poking that guilt spot that all of us smokers/ex-smokers have. And the one that never-smokers are made to feel just because they have a devastating illness.

No one should be made to feel guilty about life choices that they have made that have only hurt themselves. It matters not if the choices were made when young or old, informed or not. If they have changed or are trying to change those choices into something more positive is what is important. And to tar and feather someone who never made that particular choice with the same brush is particularly maddening.

Anyway, I took the survey as it is one small thing that I can do to help in educating others about lung cancer and the stigma attached to it.

Dawn

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  • 2 weeks later...

Dear LUNGevity community,

I am the UCSF researcher conducting the stigma study, I came across your comments about the study and I wanted to respond. First, of all, if you encountered a problem entering data, I apologize, that glitch is now fixed. For those of you who have taken the time to complete these surveys – THANK-YOU. You have made it possible to explore an area in lung cancer care that has not been investigated before. As we put this study together we realized that many of these questions could have the potential to create thoughts and feelings that some may or may not have been previously aware. I encourage anyone who has that experience to talk with friends, family, and health care providers. I also see that the LUNGevity community provides an important source of support.

Regarding the smoker vs non-smoker issue, please know that regardless of present or past smoking status it looks like lung cancer patients experience a similar “prejudice” or “bias” or as we explain it, “stigma”. We are interested in understanding the experience of all lung cancer patients. My parents were lung cancer patients, and many of the patients I have cared for were lung cancer patients – there is much we don’t know about the effect stigma or bias has on physical and emotional health, and I hope that we will find out more. I and my research team will take into consideration all of your comments and hope to improve our questions so we can improve the quality of the research, and ultimately improve the quality of care for all lung cancer patients.

All the best to you and thank you so much for your contributions.

Janine Cataldo

Janine K. Cataldo, PhD, APRN-BC

Assistant Professor

Physiological Nursing - Gerontology

University of California, SanFrancisco

2 Koret Way, N611

San Francisco , CA 94143-0610

email: janine.cataldo@nursing.ucsf.edu

tel: 415/476-4721

fax: 415/476-8899

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