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In 2003 the Dutch Lung Cancer Information Centre (Longkanker Informatie Centrum) launched a website containing information on lung cancer accessible to anyone.
Our study aim was to inventorize the information needs of the visitors of this website by analyzing the questions they asked the lung cancer specialists in the websites interactive section “Ask the Physician”.
The first 2000 questions posted up until May 2006 have been classified by visitors’ wish, type of required information, identity, gender, and phase during treatment course.
Our results show that 1893 (1158/1893, 61%) of the questions were asked by a loved one/caregiver and (239/1893 13%) by patients. 1 out of 3 questions was asked by a daughter/grand-daughter. Most questions concerned specific information on lung cancer and lung cancer course (817/1893, 43%). The most inquired specific information topics were therapy side effects, diagnostics, general information on lung cancer, and regular therapy. Furthermore, questioners wanted to verify their own doctor’s information (122/1893, 6%), a diagnosis (267/1893, 14%), and a prognosis (204/1893, 11%).
Lung cancer patients and their caregivers asked the most questions in the interactive website section. The most frequently requested information was more detailed information. These include specific information on lung cancer (regular therapy, diagnostics, and disease symptoms), verification of what the doctor has said, diagnosis, and prognosis. Most of the requested information could have been obtained from treating specialists, indicating that current information supply to lung cancer patients and their caregivers may not be matching their needs sufficiently. The further implementation of an online dialogue with lung cancer specialists might be a solution.
The Internet has changed the position of patients within the healthcare system. Currently, the Internet is widely used as a resource for health related information [
As a result of an initiative of doctors, patients, nurses, and other professionals involved with lung cancer, the Dutch Lung Cancer Information Centre (DLIC) was founded. There were not a lot of information available on lung cancer in the Netherlands and lung cancer patient groups were poorly organised [
This centre is meant for lung cancer patients, their relatives or loved ones, and people seeking information about lung cancer. The centre of the activities of DLIC is the website [
The most popular page of the DLIC website is the interactive section “Ask the Physician”, which was launched in March 2004 [
The large number of questions in the section “Ask the physician” indicates that website questioners, presumably lung cancer patients and their caregivers, are in need of information on lung cancer. Studying these questions might give more insight into the identity of these specific visitors and in their information needs. It is important to define these needs as it might help defining guidelines for a better way of addressing lung cancer information by treating specialists. There are many studies published about looking for health related information on the Internet, but we did not find any studies addressing online interaction between questioners and lung cancer specialists. The aim of this study was to classify the asked questions posed on the DLIC website into categories so as to give an overview of the types of persons who visit the website and their information needs.
The main objective of the DLIC for answering questions in the interactive section “Ask the Physician” is to give support to questioners, clarify, and indicate where possibilities can be found with their own specialist. If lifestyle advices or smoking were mentioned by questioners, smoking was systematically discouraged, while exercise and a healthy diet were encouraged. Diagnoses were never stipulated, initial opinions were not challenged, and no other treatment suggestions were made.
Every time new visitors used the interactive section to ask a question, they had to fill in a form and give their name and email address. Each form and each question with the matching answer have been carefully read retrospectively by our team members (RMS and CL). After reading, categories were deducted from the form/question/answer according to their content and set in a database. If it was impossible to determine any of the categories of the visitors, items were classified as unknown.
The questions have been categorized into the next items determined by our research group (see
The first 2000 questions asked until May 2006 on the webpage “Ask the Physician” [
According to Dutch law, this study does not need approval by an ethical review board.
Categories.
Categories | Possible outcomes |
|
|
Student | |
Patient | |
Caregiver: child/grandchild, partner, other family members, no family | |
Person who fears lung cancer | |
Other | |
Unknown | |
|
|
Male | |
Female | |
|
|
Before diagnosis-symptoms only | |
Before diagnosis-after X-ray | |
After diagnosis | |
Time of choosing therapy | |
After surgery | |
During therapy | |
After therapy | |
After healing or recovery | |
Terminal stage | |
After death | |
Other | |
Unknown | |
|
|
Specific information on lung cancer or lung cancer therapy Diagnosis | |
Prognosis | |
Treatment advice | |
Explanation of doctor’s words | |
Terminology questions | |
Help with a choice | |
Lifestyle advice | |
Help with essay/paper | |
Other | |
Unknown | |
|
|
Lung cancer information in general | |
Therapy side effects | |
Symptoms of disease | |
Regular therapy | |
Alternative therapy | |
Experimental therapy | |
Diagnostics | |
Lung cancer prevention | |
Disease progression | |
Other |
Since its launch in March 2004, the webpage “Ask the Physician” has been widely visited. Data on the numbers of visitors, page views, questioners, questions, lung cancer incidence, and prevalence in the Netherlands are not shown in current manuscript but are available on request.
During our defined study period (March 2004-May 2006), 2000 questions have been asked by 1200 people. One person asked 107 questions on her own, and the information seeking behavior of this person was not likely to be representative for the majority of questioners using the interactive webpage. This person was excluded.
Eighty percent (1199/1893, 80%) of the people who asked questions on the interactive webpage asked one question. The rest (694/1893, 20%) asked one or more additional questions. Around 1% of the people asked more than 10 questions. In total 1893 questions have been analysed.
Regarding the percentages of questions asked by caregivers and lung cancer patients, caregivers asked 4.8 times more questions than patients in a period of 27 months. This means that 212 questions were asked by caregivers per 100 patients per year.
All questions asked by patients and caregivers (n=1394) were asked at different phases during lung cancer procedure. Most questions arose during therapy (376/1394, 27%), after therapy (223/1394, 16%) and after diagnosis (209/1394, 15%). Questions were also asked at the terminal stage of illness (125/1394, 9%), before diagnosis after the first X-ray (112/1394, 8%), and after surgery (98/1394, 7%).
The category “verify doctor’s information” means that a questioner checked whether the information given by the specialist was true: “the doctor has told me that I can choose between chemotherapy and radiotherapy as therapy, is this true?” The category “clarify doctor’s explanation” means that the questioner wanted an explanation of what the specialist had said: “My father has lung cancer and will be treated with chemotherapy. The doctor has said that with treatment my father has 30% chance. What does he mean?” The category “unknown” has been applied when the purpose of the questions was unclear or unknown.
In the case of questions regarding specific information, the number of topics asked exceeds the number of requests for information on lung cancer and lung cancer therapy (
When patients wanted specific information, the most frequently discussed topics were (see
When other questioners requested specific information, the most frequently asked questions were about therapy (196/931, 21%), general information on lung cancer (140/931, 15%), diagnostics (113/931, 12%), disease symptoms (109/931, 12%), therapy side effects (100/931, 11%) and disease course (102/931, 11%).
Questioner’s identity type.
Questioner identity (n questions=1893) | n | % |
Caregiver | 1158 | 61.17 |
Patient | 243 | 12.84 |
Person who fears lung cancer | 239 | 12.63 |
Student | 55 | 2.91 |
Other | 30 | 1.58 |
Unknown | 168 | 8.87 |
Questioner’s identity type by gender.
Category |
|
n | % |
|
|
|
|
|
male | 415 | 21.92 |
|
female | 1225 | 64.71 |
|
unknown | 253 | 13.37 |
|
|
|
|
|
male | 66 | 27.2 |
|
female | 144 | 59.3 |
|
unknown | 33 | 13.6 |
|
|
|
|
|
male | 190 | 16.41 |
|
female | 835 | 72.11 |
|
unknown | 133 | 11.49 |
|
|
|
|
|
male | 123 | 14.49 |
|
female | 622 | 73.26 |
|
unknown | 104 | 12.25 |
|
|
|
|
|
male | 48 | 26.67 |
|
female | 126 | 70.00 |
|
unknown | 6 | 3.33 |
|
|
|
|
|
male | 11 | 13.25 |
|
female | 55 | 66.27 |
|
unknown | 17 | 20.48 |
|
|
|
|
|
male | 8 | 17.39 |
|
female | 32 | 69.57 |
|
unknown | 6 | 13.04 |
What was asked in the first instance: topics, patients, and other questioners.
Topics | Patients (n=243) |
Other questioners (n=1650) |
Total group (n=1893) |
Specific information | 122 (50.2) | 695 (42.12) | 817 (43.16) |
Verify doctor’s information | 25 (10.3) | 97 (5.88) | 122 (6.44) |
Diagnosis | 20 (8.2) | 247 (14.97) | 267 (14.10) |
Prognosis | 19 (7.8) | 185 (11.21) | 204 (10.78) |
Treatment advice | 14 (5.8) | 85 (5.15) | 99 (5.23) |
Other | 11 (4.5) | 69 (4.18) | 80 (4.23) |
Terminology | 10 (4.1) | 66 (4.00) | 76 (4.01) |
Clarify doctor’s explanation | 7 (2.9) | 71 (4.30) | 78 (4.12) |
Advice, references | 6 (2.5) | 36 (2.18) | 42 (2.22) |
Help with a choice | 4 (1.6) | 19 (1.15) | 23 (1.22) |
Lifestyle advice | 3 (1.2) | 30 (1.82) | 33 (1.74) |
Unknown | 2 (0.8) | 3 (0.18) | 5 (0.26) |
Help with essay/paper | 0 (0.0%) | 47 (32.85) | 47 (2.48) |
Topics of required specific information on lung cancer and lung cancer therapy, patients, and other questioners.
Topics of specific information | Patients (n=145) |
Other questioners (n=931) |
Therapy side-effects | 29 (20.0) | 100 (10.7) |
Diagnostics | 28 (19.3) | 113 (12.1) |
Regular therapy | 26 (17.9) | 196 (21.1) |
Experimental therapy | 15 (10.3) | 50 (5.4) |
Disease symptoms | 14 (9.7) | 109 (11.7) |
What can it be? | 11 (7.6) | 52 (5.6) |
Disease course | 9 (6.2) | 102 (11.0) |
General information on lung cancer | 7 (4.8) | 140 (15.0) |
Other | 5 (3.4) | 51 (5.5) |
Alternative therapy | 1 (0.7) | 6 (0.6) |
Lung cancer prevention | 0 (0.0) | 12 (1.3) |
In this study, we looked at information that was requested from online lung cancer specialists by visitors of the DLIC website. Most questions were asked by lung cancer patients and their caregivers (especially daughter and granddaughter). There are many studies published about looking for health related information on the Internet, but studies about asking specific questions to online (lung) specialists are rare. This distinguishes our present study. Our study results show that most frequently requested information was more detailed information about lung cancer (such as regular therapy, diagnostics, and disease symptoms), verification of doctor’s words, diagnosis and prognosis. This kind of information could have been obtained from treating physicians, implying that the supplied information to lung cancer patients and their caregivers may be insufficient with regard to their needs. Beside this, the impressive number of questions asked on the website indicates that patients and caregivers are willing to participate in online dialogues with specialists.
Before comparing our results with data from other studies, it should be mentioned that we have chosen to analyse all questions regardless if they were from one person or a different one. Since the number of persons who asked more than 1 question is substantial (20%), this may have influenced our results. An argument for our approach is that each question was different and was asked during different phases of lung cancer procedure. Each question should thus be considered as one item regardless of who asked it.
Similarities and differences between our results and other study results can be seen. We found that (1158/1893, 61%) of the questions were asked by caregivers. The result confirms our observations in our previous study [
In our study, (243/1893, 13%) of the questions were asked by patients. Studies of Fleisher et al [
Considering the number of visitors per year attending the website and the number of questions asked by caregivers and lung cancer patients, the question rises whether present results are representative for the total website visiting population of caregivers and lung cancer patients. According to our data, about 212 questions are being asked by caregivers per 100 patients per year for the 14,000 annual cases in the Netherlands. The number of visitors of the DLIC website per year appears relatively larger than the number of questions asked. A plausible explanation for this fact may be that many visitors already found the answers to their questions in the websites general information or in the questions in the section “Ask the physician”. Another explanation may be that visitors solely visited the website to look for information and that some of them may not dare to ask questions. If we compare present results with the poll “visitor identity” we had performed in our previous study [
Our study found that most information seeking behavior occurred during therapy, after therapy, and after diagnosis. Other studies show similar results, indicating that most patients seek explanatory information just after their diagnosis and before starting treatment; or just after diagnosis (49%) or during treatment (31%) [
Information seekers had specific questions. Most of them wanted specialized information about a specific topic concerning lung cancer, a diagnosis, a prognosis, or to verify doctor’s information. The most frequently asked topics of specific information about lung cancer in present study were regular therapy, diagnostics, general information about lung cancer, therapy side effects and disease symptoms. A number of studies investigated the most wanted information topics by Internet users, and found that information related to treatment (80%) [
It is noteworthy that patients of our study were more interested in trials and side effects than the other questioners, who were mostly caregivers.
Given the questions on the webpage “ask the Physician” and the fact that most answers could have been obtained from the treating physician/specialist, it could be concluded that for many of these lung cancer patients and caregivers visiting the website, information given during specialist consultations was unclear, insufficient, not well understood or not well remembered. This has also been mentioned in several studies [
Further research is needed to explore the reasons why lung cancer patients and their caregivers turn to online lung specialists for information. The importance and role of caregivers during treatment should also be investigated since they appear to be involved in the information supply of lung cancer patients in present study.
Lung cancer patients and their caregivers asked most questions in the interactive section of the DLIC website. The most frequently requested information was more detailed and specific information about lung cancer (regular therapy, diagnostics and disease symptoms), verification of what the doctor has said, diagnosis, and prognosis. Most of the requested information could have been obtained from treating specialists, indicating that the information supply of lung cancer patients and their caregivers may not be matching their needs sufficiently. Since lung cancer patients and caregivers seem to be appreciating and willing to use online interactive dialogue with lung cancer specialists, further implementation of such dialogue might be a solution.
Dutch Lung Cancer Information Centre
The authors thank N Saouti for critical comments and JSW Lind and VA Janes for writing support.
None declared.