Results
Of 961 participants approached, a total of 463 participants (48%) gave consent and entered the online survey (125 patients, 72 FFCs and 266 physicians); however, not all participants completed the survey. Valid input was collected from 371 participants (80% of those enrolled; 113 patients, 70 FFCs and 188 physicians). Respondent demographic information is shown in Table 2. In total, participants were drawn from 25 countries across five continents, including Africa, the Americas, eastern Mediterranean regions, Europe, southeast Asia and the western Pacific regions. As described above, the questions posed explored a range of topics concerning participants' feelings and perspectives on lung cancer. Free-text findings are presented using illustrative quotations and are reported exactly as inputted by the respondent, followed by the participant's category (patient [Pt], FFC or physician [Phy]), reference number, age group in years and country of origin.
Overall Feelings About Lung Cancer
Patients', FFCs' & Physicians' Views When asked to draw how lung cancer made them feel and to subsequently explain their drawing, a number of patient respondents (24/96 [25%]) expressed sadness at their disease or diagnosis. Patients expressed this view in the following ways:
"I try and not think of my disease but when I think about it I feel sad and down" (Pt 488, 51–60, Italy);"
It's so hard not to cry every time I think about the sickness" (Pt 451, 51–60, Sweden).
In a similar vein, 28/64 FFCs (44%) expressed sadness for the person they were supporting or caring for, as well as expressing sadness for how it was affecting them:
"When my mum feels better, it's a sunny day and the flower blossoms. When my mum feels sick, it's a rainy day and the flower withers" (FFC 730, 61–70, Hong Kong);
"I'm sad that my sister had to suffer so badly" (FFC 696, 51–60, USA).
Physicians recognized the feelings of sadness and anxiety that patients and FFCs described, and often expressed these feelings in emotive terms:
"Utter emptiness and desolation" (Phy 1321, 31–40, UK);
"They feel sad, weak and alone" (Phy 1561, 41–50, Spain).
"To show I will fight it as long as I can. Those are boxing gloves on my hands" (Pt 509, 61–70, USA);
"I'm a solider and I will defeat the cancer" (Pt 527, 41–50, Hong Kong);
"Know the enemy and attack it with the ultimate goal of cure" (FFC 738, 41–50, Malaysia).
Of course, a façade of happiness and positivity could shroud sadness:
"Those around me who know, think I am happy but I am inside sad" (Pt 440, 31–40, UK).
Responses suggesting transformation following a cancer diagnosis were less common than the language of fighting, hope and optimism, but they did occur in the corpus:
"It's made me a better and stronger person" (Pt 442, under 30, UK).
When asked to describe any issues that result in frustration ("Is there anything that you feel angry and frustrated about regarding your cancer and its treatment?"), patient, FFC and physician responses were similar. Patients were most likely to comment on the impact of the disease on their lives (8/104 [8%]) and the side effects of treatment (7/104 [7%]); however, the most common responses from FFCs and physicians were centered on the disease itself (9/59 [15%] of FFCs and 22/172 [13%] of physicians). Complaints about the current treatment options were also noted by patients (8/104 [8%]), FFCs (5/59 [8%]) and physicians (10/172 [6%]):
"Having been through simultaneous chemo and radiotherapy, the tumor is still present" (Pt 535, 71+, Singapore);
"The hopelessness about the treatment" (Phy 1357, 41–50, France).
In addition to concerns about the effectiveness of treatment, a number of patients and FFCs mentioned aspects of the healthcare service that they had received as being causes of frustration. Reasons for feeling frustrated included waiting times (for diagnosis and treatment) and interactions with healthcare providers (doctors being perceived as uncaring or aloof). A lack of clarity or information about their condition and what to expect, as well as a lack of informational continuity and communication between practitioners managing their care, were also cited as reasons for frustration among patients and FFCs:
"My doctor's inability to clearly answer my questions" (Pt 465, 51–60, USA);
"About the Dr Oncologist not communicating with the Radiation Oncologist" (Pt 458, 71+, USA);
"The lack of information given to me about how I would feel. I guess it's just assumed you're not gonna feel good" (Pt 472, 51–60, USA);
"That the doctors still choose to speak in jargon" (FFC 680, 51–60, UK);
"How cold the oncologist people are" (FFC 698, 51–60, USA).
When asked the same question ("Is there anything that you feel angry and frustrated about regarding your cancer and its treatment?"), almost one-fifth of patients (20/104 [19%]) expressed no anger. While FFCs and physicians expressed anger towards the cancer, this was not strongly reflected in the patients' responses, where the language of positivity featured once again:
"No, it doesn't make me angry … still trying to keep a positive outlook" (Pt 477, 31–40, USA).
Some FFCs expressed both anger and frustration at their own lack of ability to help (2/59 [3%]) or at other people's attitudes and lack of support (6/59 [10%]).
When patients and FFCs were asked how they would describe lung cancer to a friend, some described the lung cancer in quite medical terms:
"Lung cancer like all other cancer will depend on what stage the disease is, benign or otherwise, and what are the best treatment and strategy available currently" (FFC 738, 41–50, Malaysia).
While others described the effects of the disease (that it was debilitating, causing sadness and worry); for others, regret about smoking was mentioned:
"Lung cancer is a terrible disease that gives me sorrow because I did not take the advice and quit smoking 20 years ago. This disease has literally taken my breath away" (Pt 465, 51–60, USA).
Other patients and FFCs again drew on a discourse of optimism when describing how best to describe lung cancer to another person:
"A disease that is no longer a death sentence – there are many treatments out there that work" (Pt 517, 61–70, USA).
Physicians frequently suggested that patients and FFCs would describe lung cancer to a friend as a devastating disease:
"The patient should [be] afraid by his disease, the chemotherapy is day after day a little bit more difficult and you lost your hair you can't move because you're too tired that what the patient can say to his friend for describe his disease" (Phy 1357, 41–50, France).
What Respondents Wish For
Patients' & FFCs' Views When asked what they would wish for, recurring themes in patients' and FFCs' wishes were for the patient to be cured of cancer (10/103 patients [10%] and 10/62 FFCs [16%]) and for there to be an end to their suffering (8/103 patients [8%]). Other participants also wished to 'turn back the clock' and do things differently; for example, not having smoked (22/103 patients [21%] and 2/62 FFCs [3%]):
"I could wake up and my lung cancer had been cured" (Pt 459, 71+, USA);
"That it will be soon over" (Pt 447, 41–50, Italy);
"I have taken care of my health better" (Pt 539, 51–60, Singapore).
Many FFCs (12/62 [19%]) expressed wishes that the cancer had never happened and that the treatments were more successful, or that there was a cure (10/62 [16%]). Six out of 62 FFCs (almost 10%) also expressed a wish to be able to do more to help:
"That there will be drugs that can definitely help lung cancer patients" (FFC 741, 41–50, Singapore);
"I had been stronger for my mum during consultations with the consultant and asked more questions" (FFC 687, 41–50, UK).
Physicians' Perspectives
Physicians identified some of the wishes of the patients by noting that patients regretted past behaviors, such as smoking (27/169 [16%]), and that patients wished for a cure (19/169 [11%]):
"Not to have been a smoker" (Phy 1415, 41–50, Spain);
"They had not picked up the habit of inhaling the toxic by-products of the burning tobacco weed" (Phy 1445, 51–60, USA).
Fears & Unanswered Questions
Patients' & FFCs' Views All respondents were asked if there were any questions about the disease or its treatment that they still wanted to ask, or had been too afraid to address. Approximately one-third of patients (37/97 [38%]) expressed satisfaction that all their questions had been answered or that there were no questions that they were too afraid to ask:
"No, I've asked extensive questions and have done research on my own. I really feel an educated patient is more likely to tolerate the treatment" (Pt 479, 51–60, USA);
"No all of the doctors have been very helpful and supportive, whatever the query" (FFC 684, under 30, UK).
In cases where questions remained, life expectancy was the most commonly expressed unaddressed or unspoken question for patient respondents (19/97 [20%]) and FFCs (10/62 [16%]):
"How much time do I have? Although I have responded well to treatments, I know there will come a time when nothing works, what then?" (Pt 535, 71+, Singapore);
"Someone needs to tell you what your life span will be after the chemotherapy and the quality of life at that point. I know that is a hard question but be up front and say what you can about this topic" (FFC 692, 61–70, USA);
"Is this the end of my life, is it hopeless and how much time is now for me" (Phy 1398, 41–50, Germany).
Other unspoken questions centered on similar issues, including the availability of a cure, other treatment options (or indeed the option to choose no treatment), the likelihood of pain and prognosis. Once more, the issue of transparent and clear communication surfaced in respondents' answers:
"When the time comes where no medication works and the patient has to be in hospice care, how should we comfort and prepare the patient for this" (FFC 740, 61–70, Singapore);
"No, in fact I wasn't told everything I wanted and needed to know about my lung cancer. I was kept in the dark and only found out certain important info when I changed GPs and requested a copy of my records. It's not right to keep such info from patients, especially when we are sent home to die. We need all the facts so we can self-treat when the doctors abandon us" (Pt 547, 51–60, Canada);
"Just how much damage is being done to healthy tissue by the drugs and radiation that are given? Why don't doctors make it clear that opting out of a treatment is one of the choices? Patients need to feel a personal connection with a doctor who takes them through oncology. Why do doctors remain so aloof from cancer patients? Are they afraid to be too close to death?" (FFC 711, 61–70, USA).
Physicians' Perspectives Responding to this question from the patient's perspective, the majority of physicians (110/176 [63%]) accurately identified patients' concerns about life expectancy and prognosis. Some physicians (28/176 [16%]) also highlighted an expectation that patients would be concerned, but afraid to ask, about levels of pain.
Sources of Pleasure & Optimism
Patients' & FFCs' Views Many patients (41/112 [37%]) and FFCs (22/69 [32%]) cited their family as being the source of pleasure for them on a given day (in response to the question, "What has made you smile today?"). Sources of pleasure for patients and FFCs also included friends (16/112 [14%] and 4/69 [6%], respectively), simple pleasures, such as a sunny day or taking a walk (16/112 [14%] and 7/69 [10%], respectively), being with a pet (7/112 [6%] and 6/69 [9%], respectively) and being alive (7/112 [6%] and 6/69 [9%], respectively):
"Spending another day with the family" (Pt 535, 71+, Singapore);
"The sun, the singing birds and the flowers on the balcony" (Pt 451, 51–60, Sweden);
"To see my husband's serene and calm" (FFC 688, 51–60, Italy).
When asked what they were looking forward to in the next day, the responses of 28/109 patients (26%) and 15/65 FFCs (23%) involved their family:
"Enjoying the weekend, going swimming with my children" (Pt 440, 31–40, UK);
"Spend time with my family" (Pt 536, 41–50, Singapore);
"Having another day with my father alive" (FFC 715, 61–70, USA).
When asked the question, "What are you looking forward to this week?", time spent with family and friends, leisure time and hoping for better patient wellbeing were the most popular anticipated events for all respondents:
"Being with friends and family/celebrating Mom's 93rd birthday" (Pt 496, 61–70, USA);
"A visit from my 3-year-old grandson" (Pt 542, 41–50, UK);
"Finishing work with sailing boat" (Pt 453, 61–70, Sweden);
"Next weekend and being together with my family" (FFC 689, 41–50, Sweden).
As the period of looking forward was increased to 1 month, many patients and FFCs were focused on the prospect of a holiday (14/109 [13%] patients and 8/64 [13%] FFCs); however, FFCs were more likely to express a primary hope for improved patient wellbeing in the next month (12/64 [19%]), compared with patients themselves (10/109 [9%]):
"My 2 months vacation approaching" (Pt 449, 41–50, Italy);
"Visit my brother in Kajang" (Pt 529, 51–60, Malaysia);
"A trip with my wife to a place we have not been much in" (Pt 454, 61–70, Italy);
"Continued wellbeing with remission of cancer" (FFC 716, 71+, USA);
"The patient gets better and able to do things herself" (FFC 743, 61–70, Singapore).
When looking to the year ahead, family (19/110 [17%]) and still being alive (16/110 [15%]) were the most commonly reported patient responses. In addition, longer-term goals, such as specific special events within the family (e.g., weddings and graduations), started to emerge (8/110 patients [7%] and 5/64 FFCs [8%]). This was also the earliest time point at which respondents considered the possibility of the patient being 'cured' or free from cancer (14/110 [13%] of patients and 13/64 [20%] of FFCs):
"Spending another Christmas with my family, seeing my son pass his exams and start college" (Pt 443, 41–50, UK);
"To stay alive and enjoy some more years with my family" (Pt 451, 51–60, Sweden);
"Going to my dream destinations" (Pt 531, 41–50, Malaysia);
"Being here to raise my kids" (Pt 549, 31–40, USA);
"Hoping my mum will still be [h]ere but the chances are very slim she's only 46" (FFC 679, under 30, UK).
Physicians' Perspectives When physicians were questioned about what they thought made patients smile that day, their responses were much more focused on the disease and the clinic, rather than on issues personal to the patient. Thirty-seven out of 183 physicians (20%) cited (the physician imparting) good news about the cancer, and 26/183 (14%) cited a healthcare provider smiling at and/or interacting with the patient, as something that would cause the patient to smile on that day. Just 18/183 physicians (10%) cited family as the primary source of pleasure to patients, compared with 41/112 patients (37%) and 22/69 FFCs (32%):
"Great weather and doctor's smiles and no pain" (Phy 1351, 31–40, France);
"To be asymptomatic and have a nice day" (Phy 1657, 51–60, Italy);
"Telling them they are doing well … scans look better" (Phy 1599, 31–40, USA).
When asked what they thought patients would look forward to the next day, only 9/172 physicians (5%) suggested family as central. Other suggestions included the patients being better (25/172 [15%]), having nonexistent or reduced levels of pain (20/172 [12%]) or being free from the effects of chemotherapy (15/172 [9%]):
"Well and free of symptoms" (Phy 1317, 31–40, UK);
"No symptoms no pain" (Phy 1421, 31–40, Spain).
When looking to the year ahead, physician responses generally matched patient and FFC responses. In particular, almost one-third of physicians focused on the patient still being alive as a hope for the longer term:
"Holidays, birthdays, weddings, births" (Phy 1319, 31–40, UK);
"To be alive without evidence of disease" (Phy 1427, 31–40, UK);
"If they are still alive, they will see their son in the college or the wedding of their daughter" (Phy 1526, 31–40, France).
Important Issues
Respondents were invited to complete some multiple-choice questions to elicit their views on the important issues and their support networks. Data were retrieved from the website that held responses from the first phase of the survey (i.e., not from the physicians recruited at international congresses). Responses from all respondents showed an even distribution among the offered choices (Table 3). Family, home and partner were selected as most important by all three groups of respondents.
In terms of supportive networks (Table 3), the majority of patients and FFCs reported seeking support from their immediate family (45 and 43%, respectively) or partner (25 and 20%, respectively). Religion (13 and 9%, respectively) and spirituality (3 and 17%, respectively) were also cited as being important sources of support. Physicians attributed more importance to religion (40%) than the FFC (9%) and patient (13%) respondents.
Advice for Other People With Lung Cancer
All participants were asked the question, "What advice would you pass on to someone who finds that they have lung cancer?" It is worth noting that both patient and FFC responses to this particular question were considerably longer than those provided for all of the other questions.
Patients' & FFCs' Views In line with participant responses to other questions, the most commonly offered advice from one patient to another was to remain "strong" and "positive":
"To learn everything they can about their cancer. To get the fight into their lives, never give up. Take your doctor's advice and knowledge but not to take everything they say as 'gospel', only you know for sure how your body system works, no one knows you better than yourself. Do whatever you have to do to stay alive and fight this cancer" (Pt 547, 51–60, Canada).
Importance was also placed on the sharing of information and feelings with others:
"Tell the people whom you love – be prepared for a rush of feelings – people don't know how to react. Some people are frightened by your diagnosis … share your feelings with someone who cares" (Pt 460, 61–70, USA).
Strength and positivity also featured strongly in advice from FFC to FFC, along with researching widely to ensure a full understanding of the condition, and being caring and understanding:
"Do not panic. Get to understand more about cancer and the treatment. Don't confine yourself only to the conventional western medical treatment. When you already have all the information, be decisive on the plan and stick to it. Never give up. Most importantly you must change your life style. This means food, water, temperament, living environment, working environment etc. A drastic change will make things happen!" (FFC 737, 31–40, Malaysia);
"Be supportive and loving. Listen well to the doctors because your loved one many times cannot take in the information given. Be willing to share your feeling and thoughts as well as being open to listen to your loved one. Be patient. Denial is common, as well as trying to be everything to your loved one. As their care giver, don't forget to be kind to yourself. Try to continue the same relationship you had before cancer with your loved one, family and friends. Cancer, like any other disease, is all encompassing for a family. Keep the joy and love uppermost, even during the silences. Share memories, keep your humor, smile, hug a lot, and enjoy the time you have together" (FFC 722, 61–70, USA);
"Be strong for the person with the cancer be there and open for them as they need all the support they can get not to mention strength" (FFC 679, under 30, UK).
Physicians' Perspectives Physicians gave largely pragmatic advice for patients, including enjoying the present, maintaining a positive outlook, stopping smoking and following medical advice:
"What they can expect from the treatment course. What tips they have to get them through, foods to eat, when to rest etc. Who they can rely on to answer different questions they have e.g., medical, psychological, spiritual, financial etc" (Phy 1331, under 30, UK);
"Be strong, ask questions. Make sure you have medications for nausea or other side effects of chemotherapy or radiation" (Phy 1463, 51–60, USA);
"Stop smoking; if you do not, get others in your family to stop. Have regular check ups and chest xray" (Phy 1438, 61–70, USA);
"Think positively and believe that you may get cured" (Phy 1286, 31–40, Jordan).