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Since its launch in 2003, the Dutch Lung Cancer Information Center’s (DLIC) website has become increasingly popular. The most popular page of the website is the section “Ask the Physician”, where visitors can ask an online lung specialist questions anonymously and receive an answer quickly. Most questions were not only asked by lung cancer patients but also by their informal caregivers. Most questions concerned specific information about lung cancer.
Our goal was to explore the reasons why lung cancer patients and caregivers search the Internet for information and ask online lung specialists questions on the DLIC’s interactive page, “Ask the Physician”, rather than consulting with their own specialist.
This research consisted of a qualitative study with semistructured telephone interviews about medical information-seeking behavior (eg, information needs, reasons for querying online specialists). The sample comprised 5 lung cancer patients and 20 caregivers who posed a question on the interactive page of the DLIC website.
Respondents used the Internet and the DLIC website to look for lung cancer–related information (general/specific to their personal situation) and to cope with cancer. They tried to achieve a better understanding of the information given by their own specialist and wanted to be prepared for the treatment trajectory and disease course. This mode of information supply helped them cope and gave them emotional support. The interactive webpage was also used as a second opinion. The absence of face-to-face contact made respondents feel freer to ask for any kind of information. By being able to pose a question instantly and receiving a relatively quick reply from the online specialist to urgent questions, respondents felt an easing of their anxiety as they did not have to wait until the next consultation with their own specialist.
The DLIC website with its interactive page is a valuable complementary mode of information supply and supportive care for lung cancer patients and caregivers.
Lung cancer is the second most common type of cancer and the most common cause of cancer deaths in both men and women in Europe and the United States [
Since its launch, the DLIC website has become increasingly popular and has reached a steady number of 25,000 unique visitors per month [
This impressive number of caregivers visiting the DLIC website, next to lung cancer patients, and their use of the online experts piqued our interest. Literature shows that a cancer diagnosis is an immediate reason for an increase in Internet use by patients and their families to obtain medical information, next to unmet information needs [
In comparison to other groups of patients, lung cancer patients and their caregivers are more vulnerable because the patients are facing a much shortened life expectancy. They need more special attention from health care providers. As the quality of life, psychological adjustment to the disease, risk of appraisal, anxiety, and depression of cancer patients and their caregivers are affected by barriers and failures in information supply and communication from health care providers [
Adequate information supply is considered to be a part of good medical care and support. To provide appropriate care to lung cancer patients and their caregivers, it is important to explore their information-seeking behavior in order to gain more insight into their needs and indications for better communication modes and a tailored information supply.
Therefore, we conducted a qualitative interview study with telephone interviews to explore the reasons why caregivers and lung cancer patients search the Internet for information and ask the DLIC online lung specialists additional questions about lung cancer, next to face-to-face consultations with their own treating specialists.
We conducted a qualitative, exploratory study consisting of semistructured telephone interviews with visitors to the DLIC website who asked the online lung specialist a question on the “Ask the Physician” webpage. This study was approved by the local medical ethics committee of the VU University Medical Center, Amsterdam.
Recruitment took place between August 2005 and April 2006. All consecutive visitors who asked the online lung specialists a question on the interactive page of the DLIC website were invited to participate in our study. After submission of a question, an online (digital) confirmation window would pop up with Dutch text, containing an invitation for participation in our study and an explanation about its purpose and the telephone interviews to be held. If visitors wished to participate, they were asked to complete an online form with their name, phone number, and home and email address in order to be contacted. After completion of the form, visitors could click on the button “send”. If they did not wish to participate, they could just close the pop-up window.
Within 3 weeks, visitors who had given their online consent for study participation were contacted by email or phone by CL (a communications expert and expert interviewer with no prior relationship to the study respondents). CL gave them additional information and checked whether participants were fluent Dutch speakers. When CL contacted the volunteers by phone and oral participation consent was given, they were either interviewed immediately, or a later appointment was made. If CL contacted them by email, written participation consent was given and an appointment was made for a future telephone interview.
Of the 84 persons who had agreed to participation online, 43 individuals could not be reached, 4 asked to postpone the interview but never contacted CL again, and 7 refused participation after initially having been interested (4 were due to the patient’s death/current poor condition, and 3 gave no reason). Ultimately, 30 participants were interviewed on their motives for looking for information on the Internet and asking questions on the DLIC “Ask the physician” webpage. Of the 30 participants, 5 were patients with a lung tumor, 20 were caregivers of lung cancer patients, and 5 did not have cancer (one lung patient and 4 individuals who feared that they had lung cancer).
Since we were interested only in cancer patients with a lung tumor and their caregivers, we analyzed only the 25 respondents with cancer. The ratio of patients and caregivers (5:20) is not balanced but is in accordance with the population of visitors of the interactive webpage, as we have reported in other papers [
Study population characteristics and Internet use (n=25).
Gender M/F | Age, years | Diagnosis patientb | Previous Internet useb | Educationc | Caregiver type | Current therapy | |
Pa1 | F | 44 | Metastasized BC | No | HE | – | Palliative therapy |
P2 | M | 62 | NSCLC I/II | Yes | HE | – | Adjuvant chemo |
P3 | F | 50 | SCLC ED | Yes | LE | – | Palliative chemo |
P4 | M | 52 | NSCLC SU | Yes | LE | – | Palliative chemo |
P5 | F | 52 | NSCLC I/II | Yes | HE | – | Adjuvant chemo |
CGa1 | F | 57 | NSCLC IV | Yes | HE | Partner | Palliative therapy |
CG2 | F | 36 | NSCLC IV | Yes | LE | Daughter | Deceased 6 weeks before |
CG3 | F | 45 | NSCLC IV | Yes | HE | Partner | Deceased 3 months before |
CG4 | F | 52 | NSCLC I/II | Yes | HE | Partner | After surgery, no adjuvant chemo |
CG5 | F | 39 | Mesothelioma | Yes | HE | Daughter | Terminal phase |
CG6 | F | 39 | SCLC LD | No | HE | Daughter | No current therapy, chemoradiation 1 year before |
CG7 | F | 33 | LC SU | Yes | LE | Daughter | Palliative chemo |
CG8 | F | 51 | NSCLC IV | Yes | LE | Partner | No current therapy, palliative chemo 6 months before |
CG9 | F | 32 | LC SU | Yes | LE | Daughter | After diagnostics and diagnosis |
CG10 | F | 26 | LC SU | Yes | HE | Niece | Deceased |
CG11 | M | 22 | Mesothelioma | Yes | LE | Nephew | Therapy unknown 6 months after diagnosis |
CG12 | F | 42 | LC IV | N/A | LE | Daughter | Palliative therapy |
CG13 | M | 58 | LC IV | Yes | LE | Partner | Palliative therapy (radiotherapy) |
CG14 | F | 38 | LC IV | Yes | LE | Sister | Palliative therapy |
CG15 | F | 21 | NSCLC I/II | Yes | HE | Daughter | No current therapy, surgery 1 year before |
CG16 | M | 28 | SCLC SU | Yes | HE | Son | Therapy unknown 3 months after diagnosis |
CG17 | M | 36 | LC IV | Yes | HE | Partner | Palliative chemo |
CG18 | M | 35 | LC IV | N/A | HE | Son | Palliative therapy |
CG19 | F | 41 | Mesothelioma | Yes | HE | Daughter | Deceased recently |
CG20 | F | 44 | LC SU/ metastases BC | Yes | LE | Daughter | Therapy unknown during diagnostics |
aP=patient, CG=caregiver.
bBC=breast cancer, NSCLC=non–small cell lung cancer, IV=stage IV, SCLC=small cell lung cancer, ED=extensive disease, SU=stage unknown, I/II=stage I or II, LD=limited disease, LC=lung cancer type unknown.
cHE=high education (university, academy, college level), LE=low education (primary school, high school, intermediate vocational training).
A topic list was made to prepare the interviews. Main topics were Internet use, information needs and supply, reasons to use the Internet, reasons to query the online lung specialists on the DLIC website, and reasons not to. The topic list was completed with personal information about demographics and disease. Sample questions asked during the interviews are listed in
The semistructured telephone interviews were conducted by CL. Participants were encouraged to talk freely until all topics were discussed. The duration range of an interview was 20-90 minutes. All interviews were written down verbatim with pen and paper, put into orthographic transcripts, and then subsequently typed into MS Word documents directly after interview termination (these MS Word documents will be referred to as “interview transcripts”). During transcription into MS Word documents, CL would already start to classify interview passages according to their content and the questions listed in
When did you start looking for information on the Internet?
Why did you look for information on the Internet?
What role does the Internet play in information supply?
What role does the caregiver play in information supply?
Why did you ask a question on the interactive page of the DLIC website?
What did you ask? What did you want to know?
Was the answer to your question satisfactory? Was it useful? Why?
At which moment during the lung cancer procedure did you have the greatest information needs?
Why did you not ask the (patient’s) treating physician your question?
Is it different to ask a question through the Internet/by email? Why? How so?
What is your opinion about the possibility of asking an online physician questions on a website?
What is your opinion about the possibility of asking your treating physician questions by email?
What is your opinion about the possibility of asking a nurse questions by email?
Would you like to communicate with the (patient’s) treating physician by email?
What would be the value of such communication?
Researchers RMS and MJW used a thematic approach in the analysis of the transcripts (n=25) [
After review of the potential themes for coherence, we refined these themes, identified new themes, and recoded some data extracts. This refinement led to the identification of similarities and discrepancies between participants with regards to the sought-after information. The newly identified themes were found to be the beneficial effects of looking for information for participants, the presence of tension between patients and caregivers provoked by the Internet search, and perspectives about the use of email with the patient’s specialist. After recoding the data extracts according to the refined and new themes, we reviewed the entire dataset again and discussed the generated main themes conscientiously and critically for coherence, consistency, robustness, and representativeness [
All respondents, except for 1 patient and 3 caregivers, reported using the Internet on a regular basis. They had access to Internet at home and used it for daily activities such as checking their email, banking, or looking for different types of information. They reported that the lung cancer diagnosis specifically urged them to seek information and ask the online lung experts lung cancer–related questions. Their diagnosis had a great impact on their lives, as they were facing lung cancer, its (future) treatment trajectory, and ultimately the shortened life expectancy of the patient. Therefore, they felt the need for additional information to learn how to deal with the situation by any means.
Both patients and caregivers also mentioned that they surfed the Internet again at specific moments later during the lung cancer treatment trajectory, such as during chemotherapy, at the appearance of new symptoms or disease progression, or when having to make a choice between two treatment options. These moments also meant a change in their current vulnerable balance, which pushed them to search for information again.
I have been told a lot at the hospital, but everything goes so fast, you hear a lot of terms, and you just do not know anything […] First, I looked at the tumor types and how everything would go during surgery. After that, I looked again when it was recommended for me to have chemotherapy.
Patients and caregivers mentioned that their need to seek information often arose once they had time to rest and think about what they had been told, often at a time when their questions could not directly be answered by the treating specialist anymore: “Once you have come home, you have forgotten half of what you have been told, which is exactly the moment you would want to ask something.” [CG8, partner]
Respondents reported searching for lung cancer–related information in general but also information specific to their personal situation. An illustration of the information search of caregiver Sylvia (fictitious name), describing what she was looking for and why, is given in
Apart from feeling the need to gather general information in order to be better informed and have a better understanding of the disease, respondents wanted to be prepared for future consultations, future course of disease, and treatment trajectory. They also felt the need for specific information regarding practical matters or emotional support directly related to their individual condition in order to help face current or short-term situations. Examples are practical matters during the treatment trajectory and finding emotional support through contact with fellow sufferers (see
Sylvia (fictitious name) is the 36-year-old daughter of a lower educated male patient of 72 years old. At time of the interview, Sylvia’s father had died a week earlier. He had been diagnosed with metastasized lung cancer 7 weeks prior.
I started looking [for information] 2 weeks after the definitive diagnosis of lung cancer with brain metastases had been made. I searched the Internet because I wanted to know the prognosis and what different types of lung cancer there were. Once I started, I kept on going. I also wrote something on the forum of the DLIC website and I got some reactions; it was very nice. It may sound strange, but it is nice to know that there are many people who are dealing with the same thing. At the hospital they don’t have much time for you. You can see them thinking “Yes, you have cancer, I have explained everything, now get on with it”. Then you come home and the questions arise […] and you think “I want to ask the question now”. But if you call the doctor, you get the secretary who says “the doctor is not here, he is with a patient. When do you have an appointment? Next week? You can ask your questions then”. But this way a question that feels urgent to you remains unanswered. This is one of the reasons why I turned to the Internet and by stumbling across the DLIC website, […] I found everything I was looking for. This website is incredible. I can stay on the site for hours […] When I came back to the treating physician after the diagnosis, I asked him “what kind of lung cancer is it, small cell, non–small cell? What are the advantages and disadvantages of giving therapy?” You should have seen his face wondering how I knew all of that. Actually, I have only ever asked the online expert one question: “if someone has metastasized cancer, why is not it possible to operate on the lungs and brain and just remove the cancer from both sites?” I received a satisfactory answer. Although it was just as I thought, it was still nice to get confirmation. And you never know, perhaps the Internet expert will say there are still possibilities or new therapies. Even if it is not the case, it is still nice to have been able to ask. I think it is excellent to be able to ask a question of the DLIC online expert and to get an answer so quickly because it has prevented several sleepless nights.
Mary (fictitious name) was a 44-year-old highly educated, married patient. She was diagnosed with breast cancer metastasized to the lungs. After a period of stable regression, she was receiving palliative therapy at time of the interview. She was very pleased with Internet as mode of information supply and the DLIC interactive webpage, but she emphasized that she did not want eHealth to become a substitute for visual contact with treating specialists in the future.
After the diagnosis, I hit rock bottom. A neighbor, who is a nurse, brought me a lot of pamphlets. This helped me back on top and gave me the feeling that I should do something. At that point [1 month after the diagnosis], I started to study the folders and the Internet. I wanted to come to grips with the situation and also get the feeling that I had a rough plan for my treatment. The Internet has played an important role in terms of information supply. I am a member of a private mailing group where we exchange a lot of information. One of the group members made me aware of the DLIC website and that questions were being answered there. Early on, I would see my doctor first and after that I would go online looking for the things he had suggested, verifying whether there were no other possibilities. But there came a point when I felt I needed to take charge of the situation instead of just following him passively. I wanted to get ahead of the game, so now I started looking for information before every new hospital appointment, so that I could come well prepared. I researched every possible thing: what I had, what I would get, what possible alternative or experimental therapies there were, things about pain control for later during the process, you name it. I have accepted the disease and I see myself as a kind of research project. I think it is good to be well informed. It gives you the feeling that you have control over your disease and your treatment.
Needs of respondents.
Information needs | Examples | |
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Background information on lung cancer | Epidemiology, lung cancer types |
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Diagnosis |
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Therapy | Regular, experimental, alternative |
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Diagnostics | Investigations types and explanation about it |
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Disease course/end of life/prognosis | Life expectancy, (overall) survival per stage, what to expect at the end of life, suffocation |
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Information sources/literature | DLIC website, websites specialized on experimental therapy |
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Managing personal situation | Help with a choice: postoperative chemotherapy, radiotherapy or not |
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Managing personal health or mental condition | Explanation and/or treatment of symptoms or side effects (eg, own neurological problems or insensibility after surgery), preparation for coming treatment (eg, what is going to happen during surgery), analgesia, what can this symptom be? |
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Managing emotions | Search for hope, confirmation, reassurance, emotional support, compassion, consolation, contact with fellow sufferers/ comparable experiences, expert’s verification/2ndopinion, moments of panics and uncertainty |
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Managing daily life | Lifestyle advices, hospital bills, food supplements, hospice |
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Managing practical aspects of treatment trajectory | Eg, explanation of medical terms/terminology like stable disease or “adenocarcinoma”, meaning of laboratory/imaging results specific to patient, organizing euthanasia |
Although patients and caregivers reported searching for general information as well as information specific to the individual condition, their searches differed with regard to quantity and content (see
On the contrary, caregivers expressed the need to collect a lot of general information of any kind (see
Numerous reasons were mentioned for using the Internet and asking the online expert questions in particular, rather than addressing their own treating specialist. Respondents said they did not
There are a lot of things that I wouldn’t discuss with the lung specialist. For example, a big part of his lung has been removed and when we caress each other, he has no feeling in that part of his skin. He does not feel my touch. He says that it feels alien, as though it’s not part of his own body. Then we asked ourselves “will it remain that way?” But you do not ask the lung specialist those kind of things when he is looking at the chest X-ray very seriously.
And you do not bother the specialist by calling him at the hospital, because surely he has better things to do.
Respondents had the feeling of not being able to ask a question or request information. They experienced barriers in their contact with their own specialist because they felt he or she had no time during and between consultations. They experienced the specialist not being open to questions: “the communication at the hospital was dramatically bad” and “We have a kind of reticence to ask our treating specialist questions. They do not like it when you ask a question.” [CG6, child]
Following the suggestion of the DLIC, I brought a list of questions for my specialist. You could see him thinking “Not another one with a list…” Specialists are always in a hurry. They do not even have time for a proper discussion with you. I have seen 4 different pulmonologists, and when you walk into the consultation room, they would all still be reading your medical record at the same time.
Patients as well as caregivers appreciated the convenience of using the Internet and the DLIC website because of its 24-hour accessibility and its anonymity. This made them feel freer to ask the online lung experts for any kind of information and helped them express their feelings better. They felt less anxiety as they were able to pose a question instantly, receive a reply from the online specialist to urgent questions within a short space of time, and not have to wait until the next consultation with their treating specialist. This was especially the case for caregivers as, for example, one of them said that the patient had a follow-up appointment every 3 months but that she could surf the Internet every day. Furthermore, respondents appreciated the expertise and open-minded, kind, and empathic attitude of the online lung experts.
I think it’s fantastic. It is anonymous and it’s great to ask your questions to someone who’s competent in the field […] I was looking for someone independent […] Although he [the online expert] is an outsider, he knows what he is talking about.
I think it is very good to be able to ask a physician questions online. It’s a smaller step to take than calling or talking to your treating specialist.
His style (of the online expert) is really nice, not disapproving. He is very kind and always says something like “I wish you good luck” or “I hope it will be all right”.
Patients and caregivers mentioned that sometimes they postponed or stopped their Internet search, for instance, because the information they encountered was too much. Not searching helped them to stay positive. Other respondents felt that they had collected enough information after a period of time and therefore deliberately quit the information search, knowing they were avoiding confrontation with the disease sometimes.
No, at the beginning, I did not look for information. The disease, it was not about me, it was as if it was about someone else […] I must say that I am not on the Internet very often anymore, because a lot of people die there. It is too much for me [...] and makes me feel depressed. You need to feel there is still a light at the end of the tunnel.
I went looking for information after my husband passed away, not during his illness though. It does not make you feel happy and I wanted to stay positive, so it does not help if you read these unpleasant things on the Internet.
I think I should not read too much about lung cancer anymore. Now that the disease has gone, it’s time to move on. I have got the feeling that I have just recovered from a heavy illness myself and that at long last I am finally fit enough to get up and go again. Yes, perhaps I am avoiding thinking about all that is lost.
Both patients and caregivers also talked about the occurrence of tension when meeting their own information needs by searching the Internet. Specifically caregivers realized that their needs were not always the same as the patients’ and experienced difficulties in dealing with the information they had collected. They felt torn by the dilemma of disclosing sensitive information or hiding it from the patients, as they wanted to protect them from (unwelcome) confrontations. For example, one caregiver said that he did not share the death of someone from his mailing group as he thought that this would be too much to handle for the patient.
There are things that I do not tell him, because I do not want to worry him […] It is difficult because sometimes, when we are at the doctor’s, I would like to know things, such as the life expectancy, but I am reluctant to ask, because I do not want my father to hear it.
Well…Actually I have kept information from him when he was very unwell and we did not know yet whether he could be operated. At the time, my son and I looked for the 5-year survival rate and decided we should not tell him. Once he was home again after the operation, he was looking at a very old medical encyclopedia that we never use. Then he said “Do you know what the 5 years survival of lung cancer is?” I said I did and in reply he asked me why I had never told him. He was upset at first, but he understood.
All patients were very positive when being explicitly asked about their opinion on the opportunity to have email contact with their own specialist for questions. Caregivers, however, had more reservations as they felt embarrassed contacting the treating specialist (as being
Respondents also reacted positively about having email contact with an oncology nurse in order to obtain medical information and ask questions, on the condition that she or he had to specialize in lung cancer. One caregiver mentioned the very useful assistance of an oncology nurse as a constant and accessible contact point for support and information during the whole treatment trajectory.
The present study adds knowledge to the information-seeking behavior of lung cancer patients and their caregivers during the lung cancer treatment trajectory and their reasons for doing so. Strikingly, the majority of respondents were caregivers. Our findings show the coping strategies of caregivers and patients towards managing lung cancer. They searched the Internet and asked online DLIC lung experts questions because they wanted lung cancer-related information and help in coping with the disease practically and emotionally. This happened repeatedly during the whole treatment trajectory. This search helped the respondents to deal with lung cancer in a better way. It permitted them to gain a better understanding, be prepared (for the treatment trajectory and the disease course), feel free to search and ask for information, express feelings, be relieved of anxiety, feel emotionally supported, and regain control. This confirms that information is essential and beneficial for coping with cancer for both patients and caregivers and that caregivers are actively involved in information search and supply [
Lung cancer patients and their caregivers searched the Internet in order to deal with lung cancer and their personal situation. The perspective of the coping theory can be applied to explain the respondents’ behavior [
Information is essential for coping with cancer, and new media (eg, the Internet, online cancer communities, mailing groups, etc) are crucial today for the dissemination of information [
Respondents were not only looking for general lung cancer-related information but also information specific to their own situation. Soothill et al [
Thus, it is important to recognize the caregivers’ needs as well as those of patient, since caregivers play a critical role in sustaining the cancer patient, and their ability to nurture and support the patient may be compromised in case of unmet needs [
As seen in our results, trying to meet one’s own information needs can also be accompanied by difficulties and/or tensions. Confrontation with threatening or negative disease information can be of great impact on the well-being of patients and caregivers [
Since we performed a cross-sectional study with an interview at one single point during the lung cancer treatment trajectory, it is possible that we have missed information on the respondents’ needs, as we did not follow them over time. Nonetheless, respondents described different moments during lung cancer treatment. The quality of a person’s information needs is constant over time even though the quantity of the needed information may show a slight decrease [
Another limitation is the fact that all interviews were held by phone and were not audio recorded. Also, CL started to classify interview passages shortly after their transcription. This may have led to bias and to information loss during the simultaneous transcription of the interviews. However, since CL is an expert interviewer used to collecting information in this particular manner, it seems less probable that data were lost. Furthermore, the classification of interview passages took place according to the questions CL asked during the interviews (see
Because data collection took place a few years ago, changes in habits of Internet users and DLIC website visitors may have occurred over time, next to changes in website availabilities. The relevance of our findings may also be questionable. However, we know that Internet health searches have become much more commonplace [
A final question to address is whether our study sample is representative of the investigated population, as ultimately a sample of 25 respondents was interviewed despite the far larger number of persons interested. Persons who never surf the Internet were also anticipatorily excluded. The respondents’ distribution is, however, in accordance with the population visiting the DLIC website [
Our study results have numerous practical implications for the care of patients and their caregivers during the lung cancer treatment trajectory. Caregivers represented the majority of respondents looking for information and indicated they needed help coping with lung cancer. However, they often felt unable to address the patient’s treating specialist. Since the well-being of patients and caregivers are connected, special emphasis must be given to the often neglected experience and needs of caregivers [
Both patients and caregivers searched the Internet and the DLIC website broadly for additional information on lung cancer. It can therefore be concluded that there is a demand for such a service, although it was not considered a potential replacement for live consultations with the treating specialists. The positive effects on the respondents’ coping and their level of satisfaction, however, show that use of such services is favorable. They should therefore be promoted as
Next to referral to a specialized oncology nurse for additional information and support, the development of direct personal email contact with the nurse or with the treating specialist may also be considered, for those reluctant to use the Internet and consult online experts. There are, of course, barriers and advantages to such communication modes [
Lung cancer patients and especially their caregivers use the Internet and the interactive webpage of the DLIC website because they want additional information on top of what they have received from their treating specialists. The information search also helps them to cope with lung cancer. The Internet and the DLIC’s interactive page are therefore valuable complementary modes of information supply. Because the DLIC online expert is not able to answer patient-specific questions, using email contact between patients/caregivers and treating specialists or specialized oncology nurses might be considered in case of urgent questions, next to referring them to reliable sources of information.
Dutch Lung Cancer Information Center
non–small cell lung cancer
small cell lung cancer
The authors thank VA Janes for writing support. Our study was financially supported by a grant from ZonMw project number 32560015.
None declared.