Dove Medical Press



SUPPLEMENTARY INFORMATIONManuscript title: Impact of cough and mucus on COPD patients: qualitative findings from an Online Patient CommunityTable S1 Questions asked to patients in the Online CommunitiesTable S2 Summary of results from the Online Communities provided back to patientsTable S3 Demographics and characteristics of patients in the Online CommunitiesTable S4 Sharing back with the patients in the Online CommunitiesTable S1 Questions asked to patients in the Online CommunitiesSr. No.Question1Please tell us a few things about yourself.?2Firstly, I’d like you to think about what spontaneously comes to mind when you’re asked about COPD and write it down in the text box?below.?3Thinking about the time before your diagnosis, what did you know about COPD??4Now, I’d like you to think about the journey from the moment you or the people around you started noticing your symptoms until the moment when you first received your diagnosis.5How old were you when you first received your diagnosis?6How long did it take from when you noticed the first symptoms to when you received your official diagnosis?7How often do you see your primary care physician for your COPD? 8How often do you see your specialist/pulmonologist for your COPD?9What was the reason of your last visit to your doctor (GP or specialist) for your COPD?10Which concerns/issues relating to your COPD have you discussed with your doctor in the last 6 months?11Please describe what a good day looks like for you when it comes to living with COPD?12Please describe what a bad day looks like for you? What are the characteristics of a “badday” when it comes to your COPD? Again, when answering please consider the impact of your symptoms or the emotions that are triggered by your COPD. 13A “better day” for you would mean that..14I’d like you to think about what spontaneously comes to mind when you’re asked about COPD and write it down in the text box?below.?15Thinking about the time before your diagnosis, what did you know about COPD??16I’d like you to think about the journey from the moment you or the people around you started noticing your symptoms until the moment when you first received your diagnosis.17How old were you when you first received your diagnosis?18How long did it take from when you noticed the first symptoms to when you received your official diagnosis?19How often do you see your primary care physician for your COPD?20How often do you see your specialist/pulmonologist for your COPD?21What was the reason of your last visit to your doctor (GP or specialist) for your COPD?22I’d like to have an open discussion about how your life has changed since your diagnosis. Please take a moment to think about the things that have changed; this might be:????Things that you do more now (e.g. to manage your symptoms), ???????Things that you have stopped doing (e.g. as a consequence of your symptoms),Things that you’ve adjusted in your life and Things that you would like to change Please also specify how you’ve noticed those changes (e.g. if you say that you can walk or sleep less, how you measure this difference) First post your own answer and then feel free to comment on other people’s answers.23How has COPD impacted your life???24Please drag and drop the different areas of your life listed below and order them from the one that has been most affected by your COPD to the one that’s been least affected by your COPD?25Please make a list of the symptoms that you experience in the early morning (when you're getting up, washing, dressing up, preparing for the day…), describe the symptom and explain how it is affecting your daily function and how you assess it (how you know it is affecting you) 26focus on the the symptoms that you experience during the day (when you're going to work, seeing friends, doing the shopping, cooking, exercising…) Please make a list of the symptoms, describe the symptom and explain how it is affecting your daily function and how you assess it (how you know it is affecting you)27focus on the the symptoms that you experience at night (when you're going to bed, relaxing, sleeping…)Please make a list of the symptoms, describe the symptom and explain how it is affecting your daily function and how you assess it (how you know it is affecting you) 28Out of all the symptoms you have listed in the previous three exercises, which symptoms are already addressed by your current medication?29Are there any symptoms that persist despite current medication? Which ones?30thinking of all the symptoms you experience, we would like you to list the 3 that concern you the most (with ‘1’ being the most concerning symptom and the ‘3’ being the 3rd most concerning symptom).31Thinking about these 3most concerning symptoms, we would like you to explain in further detail the following: 1. Your experience of the symptom, what happens to you and what is especiallyannoying about this symptom. 2.?How it impacts your normal functioning (ability to carry out daily tasks)and general aspects of your health (your mood, energy levels, quality ofsleep…)? 3. How you deal with this symptom? 32Thinking specifically about breathlessness, on a scale from 1 to 7 where 1 is ‘the least impactful’ to 7 ‘the most impactful’. 33Thinking specifically about persistent cough with phlegm/sputum, on a scale from 1 to 7 where 1 is ‘the least impactful’ to 7 ‘the most impactful’.34How is this symptom impacting your daily life? Please explain the experience and the problems with experiencing your persistent cough with phlegm/sputum.35How do you currently deal with this symptom (persistent cough with phlegm/sputum)?36Please complete the following sentence:Getting rid of my persistent cough with phlegm/sputum would mean_________37Thinking specifically about your experience with persistent cough with phlegm/sputum, how, if at all, is this impacting your sleep patterns? To what extent is this impact affecting you?38Thinking specifically about your experience with persistent cough with phlegm/sputum, how, if at all, is this impacting your urinary control? Are you suffering from incontinence? And if so, do you have the need to use pads? 39Thinking specifically about your experience with persistent cough with phlegm/sputum, how, if at all, is this impacting your social relationships/work life??40Thinking specifically about your experience with persistent cough with phlegm/sputum, how, if at all, is this impacting your level of mobility?41With regards to your?persistent cough with phlegm/sputum?what level of reduction in cough (either in terms of frequency, time of day, intensity of cough) would be meaningful to you and/or have an impact on your quality of life?42Could you please talk us through the evolution of your treatment? What was your first treatment? How many times your treatment has been changed, what motivated this change/these changes, etc.?How many inhalers do your currently need to take and at what frequency?How regimented are you in terms of taking your treatment?43Based on the outcomes of your treatment, on a scale from 1 to 7 where 1 is “not at all satisfied” and 7 “extremely satisfied”,?how satisfied are you with your current therapy?Could you briefly explain what could be improved?44I’d like you to think about your personal goals in relation to your treatment and what would really make a difference in the way you manage your symptoms.?45Thinking now of your experience with persistent cough and phlegm/sputum, to what extent would you need a new treatment to address this symptom?46What would this treatment do for you? And enable you to do?47A new treatment that your physician is considering prescribing for your COPD comes with a monthly co-pay of $100. Can you please describe the characteristics that you expect from this treatment?48What would be that one thing that a treatment had to show for you to be willing to accept a monthly co-pay of $50?49Thinking now of your experience with persistent cough and phlegm/sputum, to what extent would you need a new treatment to address this symptom?50What would this treatment do for you? And enable you to do?51For this open a discussion we would like you to talk to one another about how you see an idealtreatment for COPD, so that we can, together, create the perfect treatment(given ‘cure’ is not a possible option these days)? ????What would the outcomes be?? ????????What symptoms would it address? How would you change your treatment to improve your life?52What, if any, sources of information do you use to learn more about COPD?53What information have you found most helpful when trying to understand your COPD?54What additional services would you like to receive from the manufacturer of your treatment?55Are you currently using or have you used any technology, wearables or health apps to track any of your symptoms??56If so, which ones? What were you tracking? And what did you learn from them?57If you were to track progress of symptoms, how would you like this to be done? E.g. would you like to keep a pen & paper diary tracking your symptoms, or an electronic one, or use a specific app, or even a wearable that captured movement and sleep patterns?58With this next exercise, we would like you to think about a COPD patient with his/her own circumstances, symptoms, challenges, concerns… whose life has been seriously impacted by the condition.?59As a final task we would love to hear from you on any final thoughts on what we have discussed on ideal treatment, your current unmet needs and/or future support services you desire. 60If you were to track progress of symptoms, how would you like this to be done? E.g. would you like to keep a pen & paper diary tracking your symptoms, or an electronic one, or use a specific app, or even a wearable that captured movement and sleep patterns?61Persistent cough with mucus is a big part of COPD patient's lives because: COPD patients' days only really starts after they have done their "rituals" and they have cleared out their lungs Cough and mucus directly impacts quality of sleep A bad night of sleep can lead to a bad day with higher levels of fatigue, and therefore lower energy to perform well at daily activities and work. A bad day also means a bad mood, leading to higher levels of anxiety. All of this will eventually affect the patient’s social life Cough and mucus are noticeable and therefore embarrassing symptoms, which can make patients more anxious and lead to greater isolation Cough can trigger incontinence, impact self-esteem and intimacy of patients Mucus secretion directly affects self-image and intimacy, leading again to lack of comfort when socialisingIs this how you feel? To what extent do you agree/disagree with these results? Do you really have a ritual to clear your lungs?? 62Please select the most appropriate terminology to refer to the excessive production of “sputum”. Do you prefer to refer to it as Phlegm or Mucus? Or other?63If other, can you please specify?64We would like to hear about your experience in the group, please leave a comment below and tell us about it.Table S2 Summary of results from the online community provided back to patientsPatientTreatment evolutionSatisfactionImprovement areasPersonal treatment goalsExpectations from new Treatment for cough/ sputum / phlegmwhat should new treatment do to youCreate new treatment for COPDUK patientsPatients seems to be adherent with taking their medications daily. Medications were not changed very frequently unless patient was hospitalized or was misdiagnosed with asthmaMost commonly prescribed current combinations are:. LAMA (Spiriva). ICS/ LABA (Seretide). SABA (Salbutamol) - when neededPatients gave mixed responses - so results are not significant enough to interpret satisfaction levelsCoughing & mucus production. Sleep. Night-time wheeze, coughing. Morning chest tightness. Tiredness. Doctor's improvement areas: Need more time with consultants, they should listen patient problem, should inform patient about condition, should inform about new inhalersNo shortness of breath. Getting rid of mucus. No cough. Sound sleep. No tiredness. Able to do some tasks. Not taking too many chemicals everyday. Learn to cope, learn more about my condition from GPtreatment to address the cause of the cough and production of phlegm, rather than just treating the symptoms . Open to try anything new. Find out exactly how or where the mucus is being generated. Makes the gung easier to get up. Combined treatment would be great. Something that could suppress the cough whilst thinning the mucus to make it easier to get ridHelp in breathing easily. No Cough. Quality sleep. More energy. Able to go out without fear/ better social lifeHelp in breathing easily. No Cough. No Mucus. No chest tightness. Quality sleep. More energy. Have normal life: Able to go out without fear/ better social life, Gain confidence. No worries about weatherUS patientsPatients seems to be adherent with taking their medications daily. . Medications were changed frequently according to some patients and for some it was not changed since diagnosisMost commonly prescribed current combinations are:. LAMA (Incruse/ Spiriva). ICS/ LABA (Symbicort). SABA (salbutamol: Albuterol/ Ventolin) - when needed. Strong antibiotics: Levofloxacin 500 mg 1 tablet for 7 daysAzithromycin 250 mg 3 times per weekPatients gave mixed responses - so results are not significant enough to interpret satisfaction levelsNo shortness of breath. No cough. Expensive medications/ inhalers. Need to find what triggers allergic reactions. May be pulmonary rehab. would help - but it is also expensive. Need more education & research on topic. Stem cell therapy - would also be costlyLearn ways to increase stamina - less shortness of breath. Stop coughing . Uninterrupted sleep. Better leakage control. Holistic treatment approach - less side effects - more effective medicines. Less cost. Better social life - less loneliness - less stress. Nutrition: To be able to eat more - gain weight. be able to exercise. Get air purifierImprove symptoms of cough, chest tightness, shortness of breath. More energy, less discomfort/ pain. Normal life. Long lasting improvement in health & QoL. It should work Help in breathing easily/ less shortness of breath. No Cough. No phlegm (got a humidifier). Quality sleep/ uninterrupted sleep. More energy/ stamina. my chest wouldn't hurt. Few flare-ups. Live longer. Ability to do more physically. Able to go out without fear/ better social life/ better QoL. willing to try new meds but the mean thing is moneyNo Cough. Better breath. More energy. Less mucus/ phlegm/ sputum. chest won't hurt. able to do simple house work activity. Symptoms: all would be address, as all the symptoms run together . Improvement: to be able to have the prior quality of life. To have a personal treatment plan that is truly tailored to you! everyone is different with different other diseasesTable S3 Demographics and characteristics of patients in the Online CommunitiesOnline Patient CommunityPatient IDAge,yearsGenderCOPD medication classes usedMedication for cough or mucusSmoking statusTime since COPD diagnosisComorbiditiesCoughed with mucus for at least 3 consecutive months in the past 2 yearsInsuranceUSA Online Patient CommunityUS0164FemaleLABA, ICSMucus thinner, antibioticsEx-smokerMore than 5 yearsObesity Asthma?? Anxiety???????YesDon’t knowUS02 58FemaleLAMAMucus thinnerSmokerMore than 5 yearsAsthma?YesMedicaidUS0338MaleLABA, LAMA, ICSMucus thinner, antibioticsSmokerBetween 2–5 yearsAsthma?? Anxiety?? Inflammatory Bowel Disease/ Irritable Bowel Syndrome? Sleep disturbanceYesMedicaidUS0463FemaleLABA, LAMAAlbuterol sulfate, inhalation solution, cough syrupsEx-smokerBetween 2–5 yearsAutoimmune diseaseAsthma? DepressionAnxiety Gastrointestinal disease Inflammatory Bowel Disease/ Irritable Bowel SyndromeNoMedicaidUS0561MaleLABA, LAMA, ICSNoneEx-smokerMore than 5 yearsCardiovascular disease Anxiety? Cancer?? Sleep disturbanceMedicareUS0674FemaleLABA, LAMA, ICSPrednisoneEx-smokerBetween 2–5 yearsCardiovascular disease? Migraine/ headaches Cancer????MedicareUS0855FemaleLABA, LAMANoneSmokerBetween 2–5 yearsDepressionAnxiety????? Sleep disturbanceNoMedicareUS0966FemaleLABA, LAMA, ICSNoneEx-smokerMore than 5 yearsDepressionAnxietyMigraine/ headaches??????MedicareUS1155FemaleLAMANoneEx-smokerBetween 2–5 yearsDepressionAnxiety???????MedicaidUS1461MaleLABA, LAMANoneSmokerLess than 2 years Not reportedMedicareUK Online Patient CommunityUK0148FemaleLABA, LAMA, ICSMucus thinner, antibiotics, cough syrupsSmokerBetween 2–5 yearsNot reportedNoneUK0263MaleLABA, LAMA, ICSNoneEx-smokerMore than 5 yearsDepression???? Diabetes??NoneUK0362FemaleLAMAMucus thinner, antibioticsEx-smokerMore than 5 yearsDepressionAnxiety Gastrointestinal diseaseCancer????NoneUK0463MaleLABA, LAMA, ICSNoneSmokerMore than 5 yearsCardiovascular disease?? Gastrointestinal disease?????NoneUK0656FemaleLAMANoneSmokerBetween 2–5 yearsAsthma Cardiovascular disease????? Diabetes??NoneUK0864FemaleLABA, ICSNoneEx-smokerMore than 5 yearsNot reportedNoNoneUK0947FemaleLAMANoneEx-smokerMore than 5 yearsAutoimmune disease??? Migraine/ headachesGastrointestinal disease??NoneUK1149FemaleLABA, LAMA, ICSNoneEx-smokerBetween 2–5 yearsDepressionNoneUK1258FemaleLABA, LAMAMucus thinnerEx-smokerMore than 5 yearsAutoimmune diseaseAsthma?? Anxiety?? Inflammatory Bowel Disease/ Irritable Bowel Syndrome???NoneUK1358FemaleLAMANoneSmokerMore than 5 yearsNot reportedNoneCOPD, chronic obstructive pulmonary disease; ICS, inhaled corticosteroids; LABA, long-acting β2-agonist; LAMA, long-acting muscarinic antagonistTable S4 Sharing back with the patients in the Online CommunitiesQueries to the patientsRepresentative verbatim responses from the patientsIs this how you feel? To what extent do you agree/disagree with these results?“That is the profile of a COPD sufferer I agree with all that 100% & yes until you have got rid of the gunge in a morning you can't function.” UK08“This diagram could have been designed specifically for me! Great summary.” UK02“I agree on all counts. I think more research should be done as to slowing down the mucus production and finding out exactly where it’s produced e.g. reflux lung, I think in the beginning mine was reflux and as just assumed lung so things have now spiralled out of control for me.” UK03“It sounds like someone listened. Thank you.” US11“I think this covers a lot, and yes it would be great?if doctors took more time to listen. I myself would not go into a room full of people with COPD?and discuss intimate details, etc. But for me, it seems more accepting to chat in a group where I can give and receive support and advice without ever needing to be face to face with them.?Maybe that meeting would happen as time went on and we got to know each other.” UK11“Thank you for gathering and sharing your findings from the panel. These insights and stories have helped me a lot!” US08 ................
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