We are conducting a research study to learn more about stigma experienced by people with chronic obstructive pulmonary disease. As you may know, many people with COPD have experienced stigma and this can have a negative effect on their physical and mental health. The knowledge we gain from this research will be useful in developing and evaluating a questionnaire designed to measure COPD related stigma.
Approximately 300 people will participate in this research. We expect it to take about 20 minutes to complete the survey. If you decide to take part in the study, we’ll ask you to complete the online questionnaires.
You are eligible to take part in this study if:
- you are at least 45 years old
- you are diagnosed with or being told by your primary care provider that you have COPD, emphysema, or chronic bronchitis
- you are able to speak and read English as the first language
You are not eligible to take part in this research if:
- you are diagnosed with a mental illness, HIV/AIDS, lung cancer, or severe physical deformities.
Before beginning the questionnaire, please read the “Consent Form for a Research Project on Development and Psychometric Assessment of the COPD-Related Stigma Scale” at the top of the questionnaires, describing the purpose of this study, benefits and risks and procedures. All of your answers will be kept confidential. No one outside of the study team will be informed of your individual answers. You will receive a $10 gift card for completing this survey.
Thank you very much for your participation. If you have any questions about this study, please contact the principal investigator, Seoyoon Woo, by phone at 910-962-3843 or email at woos@uncw.edu.
If you are interested in taking this survey, click the following link to begin.
The COPD Foundation is pleased to be able to share opportunities regarding research studies with COPD360social members. If you have any questions about this opportunity, please contact your physician or the link at the end of this post.
COPD patients take inhaled medicines (like ipratropium bromide and tiotropium) which help decrease mucus production and block reflexes produced by airway nerves that contribute to COPD symptoms.1 Inhaled medicines can help patients manage their COPD symptoms, but are challenging for patients in several ways:
- Copays for COPD medications can be expensive
- Patients must remember to take their COPD medications every day as prescribed for them to work effectively
- Using the inhaler devices correctly and getting these medications into the smaller airways is difficult, particularly for people with poor lung function, i.e. people with COPD!
Over a three-year period, nearly 50% of patients with COPD will suffer at least one COPD flare-up despite taking their routine COPD inhalers1. A COPD flare-up is when your COPD symptoms become much worse than normal, and you need to seek additional medical care. This happens when the COPD medications are overwhelmed by airway nerve activity, typically resulting from bacteria or viruses, and are unable to keep mucus low and airways open. Patients may need urgent care or may even be hospitalized, although most flare-ups can be managed with additional prescriptions, usually for steroids and/or antibiotics. However, these medications have worrisome side effects, especially with long-term use2,3 . And COPD flare-ups worsen lung function, exercise tolerance and quality of life for weeks or even months, making it difficult for patients to recover.
The COPD Foundation is partnering with Collaboration in COPD Exacerbations (CICERO) and the European Lung Foundation(ELF) to ask patients to share their thoughts on questionnaires that have been developed to assess how COPD affects your daily life. We understand that questionnaires are sometimes long and difficult. We also want to hear your thoughts on how care can be improved.
Please visit the ELF website and share your story by taking the survey: https://europeanlung.org/en/get-involved/surveys/involving-patients-in-copd-research/
Before a medical device can be approved for use in a general population, a thorough process of research must be done. Clinical studies are one of the key steps in that process. Doctors are enrolling volunteers for a treatment in a clinical study that may have the potential to reduce COPD Flare-ups.
If you have COPD and still experience flare-ups despite your medications, you may qualify for the AIRFLOW-3 Clinical Trial. The trial is evaluating Targeted Lung Denervation, an investigational treatment which may have the potential to reduce the risk of COPD flare-ups through a one-time, non-surgical, outpatient procedure.
New COPD research can’t move forward without volunteers like you. Answer a few questions to see if you may be eligible to take part. Visit https://airflowtrial.com to complete a short survey.
Participating in clinical trials is one way to support the entire COPD population and help researchers develop treatment options at the same time. Two previous studies have shown that investigational study drug might reduce moderate-to-severe symptom flare-ups for people living with COPD. A new clinical trial is further evaluating this drug in individuals with COPD, and volunteers are needed.
To qualify, you must:
- Be 40-85 years of age.
- Be a current or former smoker living with COPD.
- Have a history of moderate-to-very-severe COPD.
- Have had three or more flare-ups of your COPD symptoms in the last year that required steroid treatment or medical attention.
- Have used multiple types of medications to treat your COPD in the past three months (this may be with one or more inhalers).
- Not have an asthma diagnosis.
New COPD research can’t move forward without volunteers like you. Answer a few questions to see if you may be eligible to take part.
Yes, see if I may qualify!
If you have any questions about the study or technical difficulty completing the Pre-screener, you can call 888-509-1308 or email patientsupport@antidote.me.
The author of this survey is a nurse and PHD student putting together her thesis. She is asking for our communities support in gathering data. The COPD Foundation is not involved in this survey
The purpose of this study is to learn if situational factors, such as social support and stress, are associated with other factors such as mood and breathing levels, and if all these factors are associated with COPD-related fatigue. It is important to participate because we hope to learn more about COPD-related fatigue to develop better treatment for fatigue in the future. We also hope to explore the lived experience of fatigue in adults with COPD during a global pandemic as compared to prior to the pandemic.
To take the survey click on the following link: https://umaryland.az1.qualtrics.com/jfe/form/SV_74cLnRJNBEdsuZo
The O2 Clip fastens a medical oxygen hose to a person’s shirt which allows the user to adjust the tension of the hose around the ears eliminating chafing and irritation. You can walk around pulling 30’ of hose and the hose won’t slip or pull off the ears allowing it to rest comfortably just off the ears. Also, the hose won’t twist up under the chin and is simple to adjust.
Suggested retail is $14.50
For more information or to purchase contact:
Buck-RCI@comcast.net
Or by mail to:
Peter Buck
112 Chestnut
Leadville, CO 80461
These portable oxygen concentrator (POC) totes and oxygen tank sleeves provide a little style with your oxygen. They are made of 100% Acrylic yarn and are machine washable. The strap is thick and soft for more comfort when worn over your shoulder. A pocket provides a place to carry an inhaler, spare cannula, keys or cards. A strap goes across the top to keep the POC secure in the tote and buttons over the pocket to keep what is in the pocket, there. For under $20.00 you can get a little style with your oxygen.
Cheryl's Crafty Corner by CherylsCraftyCoStore
The O2 Safety Strap is the ONLY Wearable Oxygen Safety device that manages Long and Short Oxygen Cannula Hoses worn by supplemental oxygen users! Worn over your shoulder the Safety Strap allows you to easily control your movements safely while keeping your hands free.
For more information: Samuel Hall ~ Inventor/ Founder, Spire Solutions LLC/O2 Safety Strap- Phone: (417) 225-0587 or visit their website: https://o2safetystrap.com/
How would you like to safely clean without the fear of worsening lung disease symptoms limiting your breath, irritating your eyes and throat, causing headaches. Simply Press the button and the Hygeia SB100 turns tap water into NATURES SANITZER, an on demand USDA organic cleaner and sanitizer stronger than bleach and hydrogen peroxide but safe around people animals and plants. So safe you can drink it! Clean, Sanitize and Deodorize without Poisons, Toxins, Residues or Fumes. Remove dirt, grime, bacteria, mold, mildew and odors. Anytime, Anywhere!!!
The Hygeia SB 100 is the only hand-held, Green-Seal certified device in the industry using just tap water to clean and sanitize. Awarded the following Green Seal Certifications: GS-53(sanitizer) and GS-37 (commercial cleaning): standard includes product performance requirements and environmental and health considerations for vulnerable populations in institutional settings such as schools, day-care facilities, nursing homes, and other facilities. GS-8 and GS-52—safe enough for household use: The standard includes product performance requirements and environmental and health requirements such as reduced toxicity, biodegradability, and reduced and recyclable packaging. Goodbye Chemicals, Goodbye Germs. Goodbye dirt, Goodbye Odors,! Hello healthy, Hello clean, Hello savings, HELLO HYGEIA! To learn more about the Hygeia SB 100 go to hygeiaglobal.com. We are presently offering a $30 discount to the COPD360social members so when ordering please enter the promotion code COPD to receive your discount.
A COPD360social member has opened an internet store for products he designs that help raise COPD awareness. Items include clothing and gift items. He can also custom design items! Visit his store at: https://www.zazzle.com/cherrycoke52
My wife has COPD and is on oxygen 24/7. After years of being on oxygen and dealing with Tangles, Kinks and Falls caused by my wife's oxygen hose and there seemed to be no solution. So we took it upon ourselves to find an answer. After trial and error we have designed a patent pending solution to reducing a majority of these issues. This new idea consists of an easy custom fit arm band attachment, with options for a fall alert attachment, and a braided hose cover that is easy to put over or remove from the existing oxygen hose(s). The desired length can be cut to order." This product also gives and added protection against cuts or punctures. My wife has been using this for months, and says, “I am not afraid, anymore." It has made a big difference in our lives. For more information go to https://www.murphyinnovations.org or email murphyinnovations53@gmail.com