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Journal of Thoracic Oncology | 2007

A web site on lung cancer: who are the users and what are they looking for?

Cilia Linssen; Romane M. Schook; Ernst Lammers; Jan Festen; Pieter E. Postmus

Purpose: The Dutch Lung Cancer Information Centre launched the Web site www.longkanker.info in November 2003. The purpose of this article is to describe the launching of the Web site, its development, the type of visitors to the Web site, what they were looking for, and whether they found what they requested. Methods: Supervised by a panel (pulmonologists, patients, communication specialists), a large amount of material about lung cancer has been collected and edited into accessible language by health care providers, and the Web site has been divided into special categories following the different stages that lung cancer patients, relatives, and health care providers go through during the illness. The Web site is updated regularly. Search engines have been used to check the position of the Web site as a “hit.” Pulmonologists have been informed about the founding of the Web site, and all lung cancer outpatient clinics in The Netherlands have received posters, folders, and cards to inform their patients. Visitor numbers, page views, and visitor numbers per page view have been registered continuously. Visitor satisfaction polls were placed in the second half of 2004 and the second half of 2005. Results: The Web site appeared as first hit when using search engines immediately after launching it. Half of the visitors came to the Web site via search engines or links found at other sites. The number of visitors started at 4600 in the first month, doubled in the next months, and reached 18,000 per month 2 years after its launch. The number of visited pages increased to 87,000 per month, with an average number of five pages per visitor. Thirty percent of the visitors return within the same month. The most popular pages are interactive pages with the overview of all questions to “ask the doctor” at the top with forum messages, survival figures of all form of lung cancer, and information about the disease. The first satisfaction poll obtained 650 respondents and the second 382. The visitors to the Web site are caregivers (57%), patients (8%), and others (students, people fearing lung cancer). Of the visitors, 895 found what they were looking for, and the satisfaction is the highest among nurses and caregivers (91% and 95%, respectively) and the lowest among physicians and patients (85% and 83%). Conclusions: Given the number of visitors to the lung cancer Web site, it can be concluded that there is a great need for additional information among patients and caregivers. The launched Web site www.longkanker.info has reached its goal of providing a dependable source of information about lung cancer and satisfying its visitors.


Journal of Medical Internet Research | 2014

Why Do Patients and Caregivers Seek Answers From the Internet and Online Lung Specialists? A Qualitative Study

Romane M. Schook; Cilia Linssen; Franz Schramel; Jan Festen; Ernst Lammers; Egbert F. Smit; Pieter E. Postmus; Marjan J. Westerman

Background 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. Objective 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. Methods 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. Results 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. Conclusions The DLIC website with its interactive page is a valuable complementary mode of information supply and supportive care for lung cancer patients and caregivers.


The Journal of medical research | 2013

Website Visitors Asking Questions Online to Lung Cancer Specialists: What Do They Want To Know?

Romane M. Schook; Cilia Linssen; Jan Festen; Franz Schramel; Ernst Lammers; Peter Van Zaanen; Pieter E. Postmus

Background In 2003 the Dutch Lung Cancer Information Centre (Longkanker Informatie Centrum) launched a website containing information on lung cancer accessible to anyone. Objective 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”. Methods 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. Results 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%). Conclusions 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.


Journal of Thoracic Oncology | 2010

The Finding of Premalignant Lesions is Not Associated with Smoking Cessation in Chemoprevention Study Volunteers

Romane M. Schook; Berber B.M. Postmus; Remco M. van den Berg; Thomas G. Sutedja; Frances S. Man de; Egbert F. Smit; Pieter E. Postmus

Background and Study Aims: Screening programs for lung cancer may lead to a heightened awareness of the risks of smoking and enhance quitting. The aim of this study was to evaluate whether the participation on a chemoprevention study for premalignant lesions could influence smoking cessation. Methods: Two hundred one volunteers, current (n = 188) and former smokers (n = 13) with more than 20 pack years had been screened for the chemoprevention study. One hundred forty-six of the current smokers at time of chemoprevention study screening have been retrospectively interviewed about their smoking behavior ≥1 year after their first contact for the chemoprevention study. Structured questionnaires were used, and interviews were held by telephone. The quitters at the time of these first interviews were contacted again 4 years after the initial interview about their current smoking behavior. Results: Of the 146 smoking volunteers, 83 were diagnosed with premalignant lesions of the bronchial mucosa and participated in the chemoprevention study, and 63 had no premalignant lesions and were not included in that study. The majority of participants were men: 87 (60%). The mean age of the participants was 52 ± 9 years, and the mean age at which volunteers started smoking was 15 ± 3. Mean number of pack years was 47 ± 27. Ten volunteers in the group without premalignant lesions and 19 in the group with premalignant lesions had quit smoking at time of the first interview. The smoking cessation rate of the total study group was 20%. Univariate logistic regression analysis demonstrated that smoking cessation was only significantly associated with male gender. No significant associations were found between smoking cessation and the finding of premalignant lesions, sex, age, level of addiction, educational level, marital condition, history of cancer/pulmonary diseases, age at start smoking, previous attempts to quit smoking, and motivation to quit smoking. Within the group of subjects who had quit smoking at the time of the first interview, 15 of 29 persons who had stopped smoking at the time of the first interview have reported that participation in the bronchoscopy screening and/or the trial has been of major influence on their decision to stop smoking. Conclusions: A smoking cessation rate of 20% has been found among volunteers for a chemopreventive trial investigating smoking-related premalignant lesions after almost 2 years after initial contact has been found. Volunteers experienced screening and trial participation as having influenced their smoking cessation. Smoking cessation was significantly associated with male gender, whereas the finding of premalignant lesions by bronchoscopy was not.


Respiratory medicine case reports | 2014

Benefit of a second opinion: From metastatic disease to resectable lung cancer with sarcoid-like reaction

Romane M. Schook; Lyan G. Koudstaal; Emile F.I. Comans; Pieter E. Postmus; Katrien Grünberg; Marinus A. Paul; Egbert F. Smit; Thomas G. Sutedja

Background Mediastinal lymphadenopathy in combination with lung cancer is suggestive for lymph node metastases but can also have other origins. Case report We describe a patient diagnosed with stage IV lung cancer presenting with parenchymal lesions and enlarged mediastinal lymph nodes. A second opinion including FDG-PET scan review and a mediastinoscopy followed by surgery revealed tumor specimens originating from a single primary tumor with a sarcoid-like reaction in the mediastinal lymph nodes, changing the diagnosis from metastasized to resectable lung cancer. Discussion PET positive lesions are not always synonymous with metastatic disease in the presence of a malignant tumor. Conscientious review of FDG-PET scans and tissue sampling are therefore mandatory to determine definitive staging and subsequent interventions.


Case Reports in Oncology | 2014

Benefit of a Second Opinion for Lung Cancer: No Metastasis to the Kidney but a Synchronous Primary Renal Neoplasm

J Marleen; Romane M. Schook; Lyan G. Koudstaal; Katrien Grünberg; Marinus A. Paul; Egbert F. Smit; Pieter E. Postmus

Background: The finding of a renal mass on imaging is suggestive of metastatic non-small cell lung cancer in the presence of a lung tumor but can also have another origin. Case Report: We describe the case of a patient diagnosed with stage IV lung cancer based on a renal metastasis. A second opinion including review of histopathological data and additional imaging followed by lung surgery and cryoablation of the kidney lesion revealed two tumors of different origins, non-small cell lung cancer and a renal cell carcinoma. Discussion: The presence of a renal mass diagnosed on a CT scan in a patient with lung cancer is not always synonymous with metastatic disease. Confirmation of diagnosis by tissue sampling is mandatory, especially if a synchronous primary tumor is possible.


Journal of Thoracic Oncology | 2013

Benefit of a Second Opinion: Intrapulmonary Metastases or Multiple Primary Tumors?

Marleen J. ter Avest; Romane M. Schook; Pieter E. Postmus; Katrien Grünberg; Bauke Ylstra; Marinus A. Paul

CASE REPORT A 70-year-old male, former smoker, and current marathon runner was diagnosed in September 2005 with a probable squamous cell carcinoma of the right upper lobe (RUL) with (possible) small satellite lesions, a nodule in the right middle lobe (RML), and a nodular structure in the left upper lobe (LUL) on computed tomography (CT) scan, and 18-fluorodeoxyglucose positron emission tomography (FDG-PET) scan. This was considered to be a primary lung cancer with intrapulmonary metastases (stage IV, histology confirmed). The patient received six cycles of chemotherapy doublet (cisplatinum 150 mg on day 1 and gemcitabine 2000 mg on days 1 and 8), which resulted in a slight reduction in size of the lesion in the RUL, and a clear reduction of the lesion in the LUL, although the RML remained unchanged (Fig. 1). Eleven months later, the lesion in the RUL increased in size. A second opinion was arranged. After reviewing all data and images with repeated PET and CT, the possibility of multiple primary tumors was considered. A video-assisted thoracoscopy, diagnostic wedge excision of the LUL, and a transthoracic biopsy of the RUL were performed, revealing two papillary adenocarcinomas. A wedge excision of the RML, a lobectomy of the RUL, and mediastinal lymph-node dissection showed a 1.8-cm diameter papillary adenocarcinoma of the LUL, a 3.3-cm diameter mixed papillary adenocarcinoma/adenocarcinoma in situ of the RUL, and a 1.1-cm diameter adenocarcinoma in situ of the RML, all radically resected. All nodes were negative. Arraycomparative genomic hybridization analysis revealed that all these lesions showed different patterns of gains and losses, consistent with three primary tumors (Fig. 2). In December 2007, a recurrence in the operation scar of the LUL, and a new abnormality in the left lower lobe (LLL) were observed on CT scan, both 18-FDG-PET positive. Diagnostic wedge excisions of the LUL and LLL and a mediastinal lymph-node dissection were performed. Pathological examination showed two invasive papillary adenocarcinomas (LUL and LLL of 1.5 cm and 0.6 cm diameter, respectively), with free resection margins, without lymph-node metastases. The postoperative course was


Karger Kompass Onkologie | 2014

Kardiotoxizität und Krebstherapie: Therapieassoziierte kardiale Morbidität bei Patienten mit auf Herz- oder Lungenerkrankung hindeutender Symptomatik

Mark Schrader; Oscar Goodman; Eric R. Schuur; Marleen J. ter Avest; Romane M. Schook; Lyan G. Koudstaal; Katrien Grünberg; Marinus A. Paul; Egbert F. Smit; Pieter E. Postmus; Ioannis Efthimiou; Konstadinos Skrepetis; Elefteria Bournia; Marc Pracht; Dominik Berthold

Ziele: Kardiale Schädigung ist eine mögliche Komplikation bei Krebstherapien. Ziel dieser Studie war zum einen die Untersuchung des Zusammenhangs zwischen verschiedenen Formen der Strahlentherapie des Thorax (ST), der Chemotherapie (CT), der Tumoroperation (TO) sowie der endokrinen Therapie (ET) und dem Vorliegen von Herzerkrankungen. Zum andern sollten die Assoziationen dieser Therapien mit der Serumkonzentration des N-terminalen Pro-B-Typ natriuretischen Peptids (NT-proBNP) untersucht werden.Methoden: Eine Gruppe von 374 konsekutiven Krebspatienten, die wegen einer auf eine Herz- oder Lungenerkrankung hinweisenden Symptomatik überwiesen worden waren, wurden prospektiv untersucht.Ergebnisse: Die Prävalenz von Herzkrankheiten betrug 36,9%. Eine Vorbehandlung mittels ST vor 1995 (n = 19) war im Vergleich zur Kontrollgruppe (keine ST oder ST wegen rechtsseitigem Mammakarzinom ab 1995; n = 311) sowohl mit einer erhöhten Wahrscheinlichkeit für eine Herzkrankheit (bereinigte Odds Ratio: 10,3; 95%-Konfidenzintervall: 3,1-34,0) als auch mit höheren Ln-transformierten NT-proBNP-Werten assoziiert (p < 0,01). Mit Anthrazyklin behandelte Patienten (n = 54) zeigten höhere bereinigte Ln(NT-proBNP)-Werte als die Kontrollgruppe (keine CT; n = 243; p < 0,01), jedoch keine erhöhte Wahrscheinlichkeit für Herzkrankheiten.Schlussfolgerung: Während ST vor 1995 und Anthrazyklin-haltige CT mit kardialen Auswirkungen assoziiert waren, gab es keine Belege für schädliche kardiale Auswirkungen einer ST mit zeitgemäßer Kardioprotektion, CT ohne Anthrazykline, TO oder ET.Übersetzung aus Oncology 2013;85:137-144 (DOI: 10.1159/000354299)


Karger Kompass Onkologie | 2014

Auswirkungen unterschiedlicher BRCA-Mutationen auf das Überleben bei epithelialem Ovarialkarzinom: Eine retrospektive, monozentrische Untersuchung

Mark Schrader; Oscar Goodman; Eric R. Schuur; Marleen J. ter Avest; Romane M. Schook; Lyan G. Koudstaal; Katrien Grünberg; Marinus A. Paul; Egbert F. Smit; Pieter E. Postmus; Ioannis Efthimiou; Konstadinos Skrepetis; Elefteria Bournia; Marc Pracht; Dominik Berthold

Ziele: Das Ziel dieser Studie war, zu untersuchen, ob die onkologischen Entwicklungen von BRCA1- und BRCA2-assoziierten Ovarialkarzinomen unterschiedlich korrelieren.Methoden: Genetische Daten und klinische Merkmale wurden mit der progressionsfreien Überlebenszeit (PFS) und der Gesamt-Überlebenszeit (OS) in Korrelation gesetzt.Ergebnisse: Die Daten von 147 Patientinnen mit BRCA-Mutation wurden ausgewertet (119 BRCA1-positiv und 28 BRCA2-positiv). Nach einer medianen Nachbeobachtungszeit von 69 Monaten betrug das mediane PFS bei den BRCA1-Patientinnen 27,2 Monate und bei den BRCA2-Patientinnen 45,46 Monate (p = 0,03). Das mediane OS betrug bei den BRCA1-Patientinnen 77,23 Monate und bei den BRCA2-Patientinnen 111,47 Monate (p = 0,08).Schlussfolgerung: Bei Frauen mit epithelialem Ovarialkarzinom in Verbindung mit einer BRCA-Mutation ist die BRCA2-Mutation im Vergleich zur BRCA1-Mutation mit Vorteilen beim PFS und einem Trend zu Vorteilen beim OS assoziiert.Übersetzung aus Oncology 2013;85:122-127 (DOI: 10.1159/000353786)


Karger Kompass Onkologie | 2014

Reexposition gegenüber mTOR-Hemmern bei Patienten mit metastasierendem Nierenzellkarzinom und mit Progression unter einer vorhergehenden mTOR-Hemmer-Therapie

Mark Schrader; Oscar Goodman; Eric R. Schuur; Marleen J. ter Avest; Romane M. Schook; Lyan G. Koudstaal; Katrien Grünberg; Marinus A. Paul; Egbert F. Smit; Pieter E. Postmus; Ioannis Efthimiou; Konstadinos Skrepetis; Elefteria Bournia; Marc Pracht; Dominik Berthold

Ziel: Ziel der Studie war festzustellen, ob eine erneute Exposition gegenüber einem «Mammalian target of rapamycin»(mTOR)-Hemmer (Everolimus oder Temsirolimus) in dritter oder vierter Therapielinie nach sequenzieller Anwendung eines gegen den «Vascular endothelial growth factor»(VEGF)-Rezeptor gerichteten Wirkstoffs und eines mTOR-Hemmers eine durchführbare und wirksame Behandlungsstrategie bei Patienten mit metastasierendem Nierenzellkarzinom (mRCC) darstellt.Methoden: Aufgenommen wurden Patienten, die zwischen dem 30. März 2001 und dem 15. September 2011 in 1 von 2 Institutionen (Hôpital Européen Georges-Pompidou, Paris; Medizinische Universität Wien) mit einer VEGF-Target-Therapie, einem mTOR-Hemmer und anschließend mit einem zweiten mTOR-Hemmer behandelt worden waren. Die Auswertung der bildgebenden Untersuchungen zur Ermittlung der objektiven Ansprechrate und Therapiedauer (TD) erfolgte gemäß den «Response Evaluation Criteria in Solid Tumors», Version 1.0.Ergebnisse: 12 Patienten erfüllten die Einschlusskriterien. Nach einer Behandlung mit 1 oder 2 VEGF-Rezeptor-Tyrosinkinase-Hemmern erhielten 7 Patienten zuerst Everolimus und 5 Patienten zuerst Temsirolimus. Unabhängig von der Therapiesequenz sprachen 6 der 12 Patienten (50%) auf Everolimus und 4 von 12 Patienten (33%) auf Temsirolimus an; 3 Patienten (25%) sprachen auf keinen der beiden Wirkstoffe an. Die mediane TD (95%-Konfidenzintervall) für Everolimus → Temsirolimus betrug 10,3 Monate (8,8-19,2 Monate) und für Temsirolimus → Everolimus 5,8 Monate (2,9-19,3 Monate).Schlussfolgerung: Trotz der begrenzten Teilnehmerzahl zeigen die Ergebnisse, dass eine mTOR-Reexposition als integraler Bestandteil einer sequenziellen Behandlungsstrategie beim mRCC durchführbar ist.Übersetzung aus Oncology 2013;85:8-13 (DOI: 10.1159/000350005)

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Katrien Grünberg

VU University Medical Center

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Marinus A. Paul

VU University Medical Center

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Lyan G. Koudstaal

VU University Medical Center

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Marleen J. ter Avest

VU University Medical Center

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Pieter E. Postmus

VU University Medical Center

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Egbert F. Smit

Netherlands Cancer Institute

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Pieter E. Postmus

VU University Medical Center

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Egbert F. Smit

Netherlands Cancer Institute

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