Quantitative Evaluation of Healthcare Information Provided to Patients with Lung Cancer: Patient Satisfaction Survey of The Japan Lung Cancer Society

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However, few objective evaluations of the information’s usefulness exist. This study posited that analyzing objective, quantified data facilitates future information provision. Our questionnaire survey on patient satisfaction with medical information using the European Organization for Research and Treatment of Cancer’s (EORTC) Quality of Life 25-item information module (QLQ-INFO25) was unprecedented in Japan. Methods: Lung cancer patients were enrolled in the trial in response to calls from patient support groups and the Japanese Lung Cancer Society. Patient satisfaction was based on information obtained from the 2019 Japanese Lung Cancer Society’s patient guidebook and a web-based survey of patients with lung cancer. Satisfaction with the information was analyzed based on EORTC QLQ-INFO25 scores and stratified into user and nonusers of the guidebook. Results: Of 332 participants (110 male, 222 female), 283 (85.2%) completed the questionnaire, among which, 170 (60.1%) respondents participated in the patient advocacy group and 82 (29.0%) read the guidebook. Participants found the research through online sources or by responding to an invitation from their primary physician or patient support group. Seventy-one users (91%) were satisfied with the guidebook content as shown by the individual scale score on the QLQ–INFO25. No statistically significant differences were observed based on the presence or absence of information in the guidebook. Subgroup analysis revealed a trend toward greater satisfaction among participants that joined the patient group and used the guidebook. Conclusions: Guidebooks and patient advocacy groups are effective in providing information to patients. Our results provide an objective basis for discussing information provision for patients with lung cancer. Strategies should be developed to communicate information reflecting patients’ diverse backgrounds. Information for the patients Questionnaire EORTC QLQ-INFO25 Patient guidebook Patient information guide Patient advocacy Figures Figure 1 Figure 2 Figure 3 Figure 4 Figure 5 Key Points Question: What sources of information do lung cancer patients find most satisfactory for treatment? Findings: Satisfaction with treatment information was assessed from 332 lung cancer patients using the EORTC QLQ-INFO25 questionnaire. An inclination towards higher satisfaction was noted when participation in patient groups was combined with guidebooks created by academic societies. Meaning: Information from credible sources and patient associations can complement each other to boost patient satisfaction. Introduction Patients with lung cancer require accurate information about the disease [ 1 – 5 ] regarding topics such as diagnosis, treatment, palliative care, alternative medicine, diet, and COVID-19. To fulfill this need, healthcare professionals worldwide are increasingly striving to provide such information to their patients [ 6 , 7 ]. However, no guidelines for the provision of appropriate medical information to patients with lung cancer existed in Japan until the Japanese Lung Cancer Society (JLCS) published a guidebook for patients and began to conduct editorial meetings in 2018. The JLCS had been working with patients to develop treatment guidelines and provide employment assistance. For this guidebook, the JLCS editorial committee worked with specialists in lung cancer treatment, social workers, nurses, pharmacists, physical therapists, and representatives of patient advocacy groups to develop a lung cancer guidebook for patients and their families, titled JLCS Lung Cancer Guidebook for Patients and Families (the Guidebook ) which was published in 2019. The Guidebook consisted of 97 QUESTIONS AND ANSWERS, which addressed questions that patients had, answered from the perspective of experts and patient advocates. The guidebook was printed and available at bookstores, conference centers, and hospitals for patient access. In this study, we reviewed the expressions used in the Guidebook based on the opinions of patient advocacy group representatives. After publication of the Guidebook , the editorial board members wanted to ascertain its usefulness for information acquisition for patients, and to incorporate their feedback into future editions of the Guidebook. This study was designed and conducted to objectively and quantitatively assess whether patients are satisfied with the information provided by the JLCS Guidebook . Methods Study design Lung cancer patients were enrolled in the trial in response to calls from patient support groups and the JLCS. Participants were asked to access and respond to an online questionnaire using SurveyMonkey® ( http://www.surveymonkey.com ) between July and August 2020. Participants were stratified into two groups: those who had used the Guidebook and those who had not. Participants were asked to complete the European Organization for Research and Treatment of Cancer’s (EORTC) Quality of Life of Cancer Patients 30-item questionnaire (QLQ-C30), Quality of Life 25-item information module (QLQ-INFO25), and an additional questionnaire designed by the JLCS. We quantified participants’ degree of satisfaction with the medical information obtained to objectively evaluate whether the level of satisfaction differs depending on participants’ backgrounds and source of information. We aimed to understand how the guidelines for patients formulated by the JLCS can be improved to provide beneficial medical information for patients. We also aimed to obtain primary data, as no existing study has investigated satisfaction with medical information for patients with lung cancer. Participants and methods Participants diagnosed with lung cancer, thymic carcinoma, or malignant mesothelioma were included in the study. All patients gave their informed consent to participate in the study by completing this questionnaire. The study protocol was in accordance with the Declaration of Helsinki and approved by the institutional review board. This study has been registered with the University Medical Hospital Information Network Clinical Trials Registry under the identifier 000040984. Statistical analysis The primary endpoint was to compare the level of satisfaction with the medical information obtained between the Guidebook user group and the nonuser group. The EORTC questionnaire was scored according to established EORTC guidelines. The t -test was used to compare specific ranks (scores). A multiple regression analysis was performed to adjust for confounding factors, including personal attributes such as sex, age, cancer type, stage or treatment history, and source of medical information. A sensitivity analysis with different adjustment factors was also performed as a reference. The total INFO25 and QLQ-C30 subscale scores were analyzed as secondary endpoints. Additionally, the scores on the questionnaire set by the researchers were explored. As exploratory evaluation items, free descriptions were analyzed using listing, after-coding, and text-mining methods. Results Participants We received 332 responses from the online survey conducted. Among these, 283 were valid responses, defined as those with a response on every questionnaire item. The response rate was 85.2% (Fig. 1 ). The age of the respondents ranged from 30 to 84 years, involved in a wide range of patient advocacy groups; the most common age group was between 55 and 59 years. Male and female participants accounted for 34% and 66% of the valid responses, respectively. In this survey, we asked about the Guidebook readers about the timing of reading the healthcare information. The number of participants who read the Guidebook between within six months of diagnosis was slightly higher. We also asked collected information regarding the treatments they were receiving at the time of the survey. Participants were undergoing chemotherapy, molecular targeted therapy, and immune checkpoint inhibitors, as shown in Table 1 . Approximately 20% of patients in both groups were under follow-up for disease recurrence. Very few participant questionnaire responses indicated receiving palliative treatment. Table 1 User, n = 82 nonUser, n = 201 n % n % Age 30–39 3 3.7 4 2.0 40–49 13 15.9 35 17.4 50–59 33 40.2 73 36.3 60–69 20 24.4 56 27.9 70–79 12 14.6 29 14.4 80+ 1 1.2 4 2.0 Gender Male 24 29.3 72 35.8 Female 58 70.7 129 64.2 Length of time since diagnosis (year) -0.5 9 11.0 12 6.0 0.5-1 8 9.8 20 10.0 1–2 12 14.6 31 15.4 2–3 13 15.9 36 17.9 3–4 9 11.0 26 12.9 4–5 12 14.6 29 14.4 5–10 13 15.9 35 17.4 10+ 6 7.3 12 6.0 Current treatment Observation 20 24.4 41 20.4 Chemo 5 6.1 53 26.4 Chemo + ICI 3 3.7 8 4.0 Chemo + TT 2 2.4 5 2.5 Chemo + RT 1 1.2 2 1.0 Chemo + Ope 1 1.2 0 0.0 Chemo + ICI + RT 1 1.2 0 0.0 CHEMO + TT + PC 0 0 1 0.5 CHEMO + PC 1 1.2 0 0 TT 37 45.1 66 32.8 TT + ICI 0 0.0 2 1.0 TT + RT 1 1.2 2 1.0 TT + AM 0 0.0 1 0.5 TT + PC 1 1.2 1 0.5 ICI 8 9.8 17 8.5 PC 0 0.0 1 0.5 Undetermined 1 1.2 1 0.5 Satisfaction with the guidebook among users Of the 283 valid responses, 82 (29.0%) participants indicated that they had read the Guidebook . No significant differences were found between the backgrounds of users and nonusers (Table 1 ). Readers were surveyed regarding their satisfaction with the Guidebook content. Twenty-six (31.7%) participants indicated that they were delighted, 49 (59.8%) were reasonably satisfied, 6 (7.3%) were undecided, and 1 (1.2%) said it was not very useful (Fig. 2 ). Source of information Next, we asked the respondents what information sources they had used for their diseases. Of the 283 valid responses, the most common sources were the Internet ( n = 249, 87.7%), primary care physicians ( n = 202, 71.1%), patient advocacy groups ( n = 150, 52.8%), books ( n = 104, 36.6%), study groups ( n = 97, 34.3%), cancer consultation support centers ( n = 34, 34.2%), and others ( n = 13, 4.6%) (Fig. 3 ). EORTC QLQ-C30 and EORTC QLQ-INFO25 scores We examined whether there was any bias in the QLQ-C30 between users and nonusers of the Guidebook . The overall quality of life (QOL), function, and symptom scale scores were calculated as shown in Table 2 . The calculation was performed according to the scoring manual provided by the EORTC. There were no statistically significant differences in the scores between the user and nonuser groups. Table 2 User Nonuser p value Mean SD Mean SD Overall QOL QL2 68.7 22.5 68.0 23.5 0.831 Function scale Physical function PF2 83.9 15.9 83.0 17.2 0.635 Daily life RF2 80.5 22.2 76.7 25 0.204 Emotion EF 77.8 19.7 77.4 17.8 0.878 Cognition CF 77.7 21.7 79.1 19.3 0.568 Social role SF 78 21.9 78.5 24.4 0.862 Symptom scale Fatigue FA 36.5 20.1 36.0 22.1 0.881 Nausea, vomiting NV 2.5 6.9 3.6 9.6 0.294 Pain PA 17.6 20.6 17.4 22.4 0.943 Breathing difficulties DY 22.8 23.4 26.7 25 0.215 Insomnia SL 23.6 23.1 20.4 24.9 0.304 Appetite loss AP 12.1 17.6 15.0 23.4 0.292 Constipation CO 17.4 24.8 18.8 23.5 0.570 Diarrhea DI 23.1 32.1 18.0 22.9 0.118 Economic impoverishment FI 28.7 32.6 25.2 29.6 0.360 We then examined the level of satisfaction with medical information using the EORTC QLQ-INFO25, following the manual provided by the EORTC (Table 3 ). In the QLQ-INFO25 scoring, the volume of each piece of data, source of information, and level of satisfaction with the data were calculated. Finally, the overall scores were calculated. As shown in Table 3 , there were no significant differences between the user and nonuser groups in the current analysis. In the OVERHELP individual scale of the QLQ-INFO25, we compared the scores of participants that used the Guidebook with those that did not. Our focus was on patient advocacy group participation and guidebook use. The results were analyzed by dividing participants into four groups according to whether they had used the Guidebook or had participated in patient meetings. Bonferroni’s multiple comparison test was conducted for the four groups on OVERHELP and the overall satisfaction index with information. Six analyses were conducted and none of the differences were statistically significant (Fig. 4 , Supplementary Table 1). However, a t -test comparing those who used the patient advocacy group and the Guidebook with those who used neither showed a statistically significant trend of higher satisfaction in the combined group ( p = 0.039) (Fig. 5 ). Table 3 User Nonuser p value Mean SD Mean SD Information volume Disease INFODIS 54.4 19.8 53.1 18.1 0.575 Examination INFOMED 64.6 24.8 62.1 22.2 0.393 Treatment INFOTREAT 51.1 17.1 51.3 17.7 0.937 Other service INFOTHSE 18.0 18.4 19.4 17.4 0.537 Another place to receive care INFODIFP 16.1 25.2 21.0 26.5 0.147 Care for recovery INFOHELP 26.5 28.9 33.8 28.7 0.051 Source of information Document INFOWRIN 69.5 46.3 75.1 43.3 0.333 CD, Video INFOCD 22.0 41.6 22.4 41.8 0.730 Degree of satisfaction Amount of information SATINFO 40.7 27.7 40.3 25.5 0.918 More amount of information RECMORE 18.3 38.9 28.4 45.2 0.078 More less information RECLESS 96.3 18.9 97.0 17.1 0.771 Did the information help? OVERHELP 58.9 26.9 54.7 22.1 0.173 Overall score Global score 44.8 14.8 46.7 13.3 0.288 Discussion This study is the first to collect quantitative data on the medical information obtained from patients with lung cancer and contributes to the literature because previous studies have not quantitatively assessed the level of satisfaction with the medical information provided by healthcare professionals. As of December 1, 2021, a PubMed search for INFO25 yielded 42 results; however, no studies had examined patients with lung cancer [ 8 ]. In addition, several guidelines for patients have been prepared by professional societies and government organizations, but no previous study has quantitatively verified the usefulness of these guidelines. We examined whether the data obtained from the JLCS Guidebook directly led to patient satisfaction in information acquisition. Overall, over 90% of Guidebook users were satisfied with the content. The results showed that the Guidebook fulfilled a particular role. However, we found no statistically significant difference in satisfaction between users and nonusers of the Guidebook . This can be attributed to several factors. First, because the survey was conducted using an Internet questionnaire, it is assumed that patients who were proficient in using the Internet mainly participated. Most respondents were 55–59 years old, which is considered younger than the average age of patients with lung cancer in Japan [ 9 ]. Therefore, we believe that many respondents had already collected information via the Internet before receiving the Guidebook. For patients who were capable of gathering information from the Internet, some felt that the information provided in the Guidebook needed to be improved. Very few participants reported receiving palliative care in parallel with systemic chemotherapy or molecular targeted therapy (users, 2.4%; nonusers, 1%). Although we advocate and promote palliative care from the time of diagnosis, patients undergoing treatment may not feel that they are also receiving sufficient (or any) palliative care. The treating team staff should provide treatment options as well as information to ensure that patients receive effective palliative care. Limitations This study has some limitations. The survey was conducted after the publication of the JLCS Guidebook . The number of cases in this survey was insufficient to provide all Guidebook users the opportunity to participate in the study. In addition, our call for study participants was facilitated through the publicity efforts of patient advocacy groups and academic societies, which undeniably contributed to selection bias of respondents. Next, although the JLCS Guidebook was published in paper format, the questionnaire survey was conducted in digital format. The survey respondents were relatively young. According to past reports, the most common age group of lung cancer patients in Japan is reported to be 70–79 years old [ 10 , 11 ]. The participants in this study were most frequently 50–59 years old, and thus differed from the background of typical lung cancer patients in Japan. Users who preferred print books to digital books were likely to be slightly older. Therefore, the age of the participants may have affected the results, as noted in previous studies [ 12 – 14 ]. It may be necessary to include a questionnaire in future studies to reach more people unfamiliar with the Internet [ 15 , 16 ]. In addition, the Guidebook content was relatively introductory and basic. It may be that much of the content is relatively easy for patients acquiring information through self-study, such as those participating in patient advocacy groups. The EORTC QLQ-INFO25 also needs to be updated. This questionnaire includes the item “information collection through CDs and videos,” which suggests the information collection methods of a slightly earlier era [ 17 ]. Internet use is now ubiquitous, and the use of alternatives, such as artificial intelligence, and patient education using interactive communication networks and networking among patients and between patients and medical professionals has become increasingly widespread [ 18 ]. We consider that the EORTC QLQ INFO25 questionnaire may need to be revised to assess the effectiveness of the current information collection tool. The study endpoint—patient satisfaction with information acquisition—must be interpreted with caution. The study is based on data obtained from a questionnaire, which has some limitation, such as bias in the target population. Based on the primary data obtained in this study, we believe that future efforts should provide medical and healthcare information materials with higher-quality medical validity to achieve an even higher level of patient satisfaction. Conclusion This study is the first quantitative national survey of the need for medical information among patients with lung cancer using the EORTC QLQ-INFO25. We found that guidebooks developed with the participation of academic societies and patient advocacy groups were considered reliable sources of information. Furthermore, multiple reliable sources of information—such as information provided by patient support groups and experts—led to higher satisfaction. In the future, we must consider how to provide information in a manner that reflects the various backgrounds of patients, such as age and the level of information sought. Declarations Role of the funding source This research was supported by the Japan Lung Cancer Society. Author contributions Dr. Sawa had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis. Concept and design: Takahama, Shimizu and Sawa. Acquisition, analysis, or interpretation of data: Takahama, Shimizu and Sawa. Drafting of the manuscript: Takahama, Shimizu and Sawa. Critical review of the manuscript for important intellectual content: All the authors. Statistical analysis: Yoshimura, Takahama, Shimizu and Sawa. Obtained funding: Takahama, Shimizu, Sawa and Oizumi. Administrative, technical, or material support: Takahama, Shimizu, Sawa and Oizumi. Supervision: Sawa. Declaration of interest statement Dr Takahama reported receiving grant funding from Takeda Pharmaceutical Company Limited during the conduct of the study and personal fees from AstraZeneca, Chugai Pharmaceutical Co Ltd, Roche Diagnostics, and MSD and grant funding from Pfizer Inc and Takeda outside the submitted work. Dr Yoshimura reported receiving grant funding from Boehringer Ingelheim and personal fees from Chugai Pharma, Astra Zeneca and Taiho. Dr Horinouchi reported receiving grant funding from AstraZeneca, Roche/Chugai, MSD, AbbVie, BMS/Ono, Daiichi-Sankyo and personal fees from AstraZeneca, Roche/Chugai, MSD, Bristol-Myers Squibb/Ono, AbbVie. Dr Kaneda reported receiving grant funding from Eli Lilly and personal fees from Chugai, AstraZeneca, MSD, Bristol-Myers Squibb, Novartis Pharma, Eli Lilly, Ono, Takeda. Dr Watanabe reported receiving grant funding from Pfizer. Dr Hayashi reported receiving grant funding from IQVIA Services JAPAN K.K., Eisai Co., Ltd., SYNEOS HEALTH CLINICAL K.K. EP-CRSU CO., LTD., EPS Corporation., Shionogi & Co., Ltd., Nippon Kayaku Co.,Ltd., Otsuka Pharmaceutical Co., Ltd., Takeda Pharmaceutical Co.,Ltd. GlaxoSmithKline K.K., MSD K.K., Sanofi K.K., Amgen Inc., Chugai Pharmaceutical Co.,Ltd., Taiho Pharmaceutical Co.,Ltd., Nippon Boehringer Ingelheim Co.,Ltd., Bristol Myers Squibb Company, SRL Medisearch Inc., Janssen Pharmaceutical K.K., PRA Health Sciences Inc., CMIC CO., Ltd., Astellas Pharma Inc., Pfizer R&D Japan G.K., Ascent Development Services, Labcorp Development Japan K.K., Eisai Inc., Kobayashi Pharmaceutical Co., Ltd., Bayer Yakuhin, Ltd, Pfizer Japan Inc., AstraZeneca K.K., AbbVie Inc., Daiichi Sankyo Co., Ltd., A2 Healthcare Corp., Novartis Pharma K.K., Eli Lilly Japan K.K., Merck Biopharma Co., Ltd, Medpace Japan K.K., Kyowa Kirin Co.,Ltd., Japanese Gastric Cancer Association Thoracic Oncology Research Group, Clinical Research Support Center Kyushu, West Japan Oncology Group, Japan Clinical Caner Research Organization, Comprehensive Support Project for Oncological Research of Breast Cancer, EPS International Co.,Ltd,., Mebix, Inc., Ono Pharmaceutical Co.,Ltd., Mochida Pharmaceutical Co., Ltd., Covance Japan Inc., Japan Clinical Research Operations, Medical Reserch Support and personal fees from Ono Pharmaceutical Co.,Ltd., Merck Biopharma Co., Ltd., Daiichi Sankyo Co., Ltd., 3H Clinical Trial Inc., AstraZeneca K.K., Novartis Pharma K.K., Chugai Pharmaceutical Co.,Ltd. Bristol Myers Squibb Company, Eli Lilly Japan K.K.,Amgen Inc., MSD K.K., Sysmex Corporation, Pfizer Japan Inc., Takeda Pharmaceutical Co., Ltd., Nippon Boehringer Ingelheim Co.,Ltd., Janssen Pharmaceutical K.K., Guardant Health Japan Corp. Dr Yoshida reported receiving personal fees from DAIICHI SANKYO COMPANY, LIMITED, Hisamitsu Pharmaceutical Co., Inc. Mr Kazuo Hasegawa is paid Chairperson of the Board of advocacy group “Lung Cancer Pateient Network ONE STEP”. Dr Oizumi reported receiving grants from Abbvie, Amgen, AstraZeneca, Bristol-Myers Squibb, Chugai Pharmaceutical, Daiichi-Sankyo, Pfizer, MSD, Sanofi, Taiho Pharmaceutical, Takeda Pharmaceutical and personal fees from AstraZeneca, Chugai Pharmaceutical, MSD, Takeda Pharmaceutical. Dr Gemma reported receiving consulting fee from Nihon Kayaku and personal fee from Daiichi Sankyo, AstraZeneca. Acknowledgments We thank all the patients, clinical staff, and the Japanese Lung Cancer Society for contributing to this research. Data availability statement All data generated or analyzed during this study are included in this published article and its supplementary information files. Ethics statement The research related to human use has been complied with all the relevant national regulations, institutional policies and in accordance the tenets of the Helsinki Declaration and has been approved by the authors' institutional review board or equivalent committee. Declaration of generative AI and AI-assisted technologies During the preparation of this work, the authors did not used AI and AI-assisted technologies. References Fallowfield L, Ford S, Lewis S. Information preferences of patients with cancer. Lancet 1994;344(8936):1576. https://doi.org/10.1016/S0140-6736(94)90386-7 Brédart A, Bouleuc C, Dolbeault S. Doctor–patient communication and satisfaction with care in oncology. 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Eur J Cancer. 2012;48(7):1055–1059. https://doi.org/10.1016/j.ejca.2011.08.018 Supplementary Files SupplementaryTable1.docx Cite Share Download PDF Status: Under Review Version 1 posted Editorial decision: Major revisions 20 Nov, 2025 Reviewers agreed at journal 20 Oct, 2025 Reviewers invited by journal 12 Oct, 2025 Editor assigned by journal 11 Oct, 2025 First submitted to journal 05 Oct, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. 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Metropolitan University: Osaka Koritsu Daigaku","correspondingAuthor":false,"prefix":"","firstName":"Hiroyasu","middleName":"","lastName":"Kaneda","suffix":""},{"id":528301016,"identity":"caef8218-2c90-4c85-ba6e-f280a326500a","order_by":5,"name":"Kiyotaka Watanabe","email":"","orcid":"","institution":"Teikyo University: Teikyo Daigaku","correspondingAuthor":false,"prefix":"","firstName":"Kiyotaka","middleName":"","lastName":"Watanabe","suffix":""},{"id":528301017,"identity":"9d119dae-f194-4d9f-91a0-3209da75b4e6","order_by":6,"name":"Hiromi Aono","email":"","orcid":"","institution":"Tokyo Metropolitan Police Hospital: Tokyo Keisatsu Byoin","correspondingAuthor":false,"prefix":"","firstName":"Hiromi","middleName":"","lastName":"Aono","suffix":""},{"id":528301018,"identity":"3ad40c81-1f66-4fad-9815-48c779f6375e","order_by":7,"name":"Keiko Tanaka","email":"","orcid":"","institution":"Tokyo Metropolitan Cancer and Infectious Diseases Center Komagome Hospital: Tokyo Toritsu Komagome Byoin","correspondingAuthor":false,"prefix":"","firstName":"Keiko","middleName":"","lastName":"Tanaka","suffix":""},{"id":528301019,"identity":"20d3656a-25b0-49a9-80c9-c2ab049801bc","order_by":8,"name":"Seiki Hasegawa","email":"","orcid":"","institution":"takarazuka city hospital","correspondingAuthor":false,"prefix":"","firstName":"Seiki","middleName":"","lastName":"Hasegawa","suffix":""},{"id":528301020,"identity":"42200450-18a7-43ef-b05d-6b111d4e05a1","order_by":9,"name":"Tomohiro Osawa","email":"","orcid":"","institution":"Gifu Municipal Hospital: Gifu Shimin Byoin","correspondingAuthor":false,"prefix":"","firstName":"Tomohiro","middleName":"","lastName":"Osawa","suffix":""},{"id":528301021,"identity":"018ac11e-10f9-44d2-9160-e488314177a9","order_by":10,"name":"Hidetoshi Hayashi","email":"","orcid":"","institution":"Kindai University: Kinki Daigaku","correspondingAuthor":false,"prefix":"","firstName":"Hidetoshi","middleName":"","lastName":"Hayashi","suffix":""},{"id":528301022,"identity":"b97001c3-7c97-4793-9f50-ede05bf1c2cf","order_by":11,"name":"Takeshi Yoshida","email":"","orcid":"","institution":"Kindai University: Kinki Daigaku","correspondingAuthor":false,"prefix":"","firstName":"Takeshi","middleName":"","lastName":"Yoshida","suffix":""},{"id":528301023,"identity":"3d36d4db-871f-4181-aae6-85a2e7b40536","order_by":12,"name":"Yasuhisa Ohde","email":"","orcid":"","institution":"Shizuoka Cancer Center: Shizuoka Kenritsu Shizuoka Gan Center","correspondingAuthor":false,"prefix":"","firstName":"Yasuhisa","middleName":"","lastName":"Ohde","suffix":""},{"id":528301024,"identity":"6b744184-66be-4a91-9534-a13c55b74527","order_by":13,"name":"Tomoki Kimura","email":"","orcid":"","institution":"Kochi Medical School: Kochi Daigaku Igakubu Daigakuin Ikagaku Senko","correspondingAuthor":false,"prefix":"","firstName":"Tomoki","middleName":"","lastName":"Kimura","suffix":""},{"id":528301025,"identity":"515d74f6-ef18-4eff-8611-91c734a6eb95","order_by":14,"name":"Mitsutoshi Akiho","email":"","orcid":"","institution":"University of Tokyo Health Sciences: Tokyo Iryo Gakuin Daigaku","correspondingAuthor":false,"prefix":"","firstName":"Mitsutoshi","middleName":"","lastName":"Akiho","suffix":""},{"id":528301026,"identity":"7846d7f6-6559-44fe-9c84-a7eeebfed6f6","order_by":15,"name":"Hatoe Sakamoto","email":"","orcid":"","institution":"National Cancer Center-Hospital East: Kokuritsu Gan Center Higashi Byoin","correspondingAuthor":false,"prefix":"","firstName":"Hatoe","middleName":"","lastName":"Sakamoto","suffix":""},{"id":528301027,"identity":"f15c3e06-6691-4217-9c57-cd231a55355a","order_by":16,"name":"Mayumi Ito","email":"","orcid":"","institution":"the Japan lung cancer society","correspondingAuthor":false,"prefix":"","firstName":"Mayumi","middleName":"","lastName":"Ito","suffix":""},{"id":528301028,"identity":"afcf0281-4aad-488f-a1c9-99debf0f9752","order_by":17,"name":"Kazuo Hasegawa","email":"","orcid":"","institution":"NPO Lung cancer patient network ONE STEP","correspondingAuthor":false,"prefix":"","firstName":"Kazuo","middleName":"","lastName":"Hasegawa","suffix":""},{"id":528301029,"identity":"b604830a-2468-489a-8e2c-6a26de4b494a","order_by":18,"name":"Koji Onishi","email":"","orcid":"","institution":"Mie Lung cancer patient association","correspondingAuthor":false,"prefix":"","firstName":"Koji","middleName":"","lastName":"Onishi","suffix":""},{"id":528301030,"identity":"6c022476-6a2b-43ba-8081-794e09dba4e5","order_by":19,"name":"Jiichiro Sasaki","email":"","orcid":"","institution":"Kitasato University School of Medicine: Kitasato Daigaku Igakubu","correspondingAuthor":false,"prefix":"","firstName":"Jiichiro","middleName":"","lastName":"Sasaki","suffix":""},{"id":528301031,"identity":"d3e96662-8789-4464-978d-4fa0aea58208","order_by":20,"name":"Satoshi Oizumi","email":"","orcid":"","institution":"National Hospital Organisation Hokkaido Cancer Center: Hokkaido Gan Center","correspondingAuthor":false,"prefix":"","firstName":"Satoshi","middleName":"","lastName":"Oizumi","suffix":""},{"id":528301032,"identity":"4d7097b2-7275-455c-a445-142e8f608618","order_by":21,"name":"Tetsuya Mitsudomi","email":"","orcid":"","institution":"Izumi city general hospital","correspondingAuthor":false,"prefix":"","firstName":"Tetsuya","middleName":"","lastName":"Mitsudomi","suffix":""},{"id":528301033,"identity":"3709b9b8-ff00-41d3-9e61-82e3c5646087","order_by":22,"name":"Akihiko Gemma","email":"","orcid":"","institution":"Nippon Medical School: Nihon Ika 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13:56:49","extension":"html","order_by":8,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":116725,"visible":true,"origin":"","legend":"","description":"","filename":"earlyproof.html","url":"https://assets-eu.researchsquare.com/files/rs-7787251/v1/752898bdb813f98d81791d08.html"},{"id":94399928,"identity":"b8d37e0b-5b0b-4828-95b5-ed9018cf6c25","added_by":"auto","created_at":"2025-10-27 13:57:52","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":177968,"visible":true,"origin":"","legend":"\u003cp\u003eConsort diagram for the study.\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-7787251/v1/00b2fa15a3d306227f1138a1.png"},{"id":94398098,"identity":"6c92da3d-b3b9-4952-956a-b76ad9aae3b7","added_by":"auto","created_at":"2025-10-27 13:56:59","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":164093,"visible":true,"origin":"","legend":"\u003cp\u003ePie chart showing the distribution of satisfaction levels, based on interviews with 283 users of the guidebook.\u003c/p\u003e","description":"","filename":"2.png","url":"https://assets-eu.researchsquare.com/files/rs-7787251/v1/4cb4c1541ce990a1b10c1bd8.png"},{"id":94398076,"identity":"71bdc86d-91ad-4a80-b995-b7ef99197ddc","added_by":"auto","created_at":"2025-10-27 13:56:58","extension":"png","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":104481,"visible":true,"origin":"","legend":"\u003cp\u003eBar graph showing sources of medical information obtained by patients; 283 patients were included and multiple responses were allowed.\u003c/p\u003e","description":"","filename":"3.png","url":"https://assets-eu.researchsquare.com/files/rs-7787251/v1/4c450da3509d52a31549bfbc.png"},{"id":94398235,"identity":"5b0283e1-da9f-4cb1-82d6-9d4cb1df1440","added_by":"auto","created_at":"2025-10-27 13:57:01","extension":"png","order_by":4,"title":"Figure 4","display":"","copyAsset":false,"role":"figure","size":152126,"visible":true,"origin":"","legend":"\u003cp\u003eResults of Bonferroni's multiple comparison test for the overall satisfaction index using the OVERHELP score: \"+\" indicates guidebook users or patient group participants, \"-\" indicates guidebook non-users and patient group non-participants.\u003c/p\u003e","description":"","filename":"4.png","url":"https://assets-eu.researchsquare.com/files/rs-7787251/v1/a3ecedae7ee88352f4ccecfa.png"},{"id":94399532,"identity":"f59ea4a3-3692-4c57-b581-a71fac37d2bf","added_by":"auto","created_at":"2025-10-27 13:57:37","extension":"png","order_by":5,"title":"Figure 5","display":"","copyAsset":false,"role":"figure","size":151016,"visible":true,"origin":"","legend":"\u003cp\u003eT-test results for OVERHELP scores: comparison between patient support groups and guidebook users. \"+\" indicates guidebook users or patient group participants, \"-\" indicates non-users and non-participants.\u003c/p\u003e","description":"","filename":"5.png","url":"https://assets-eu.researchsquare.com/files/rs-7787251/v1/770c7c5303ae9b4711f3d3c9.png"},{"id":94459548,"identity":"fb520e85-fa42-4f01-bc8d-0150fc8ffd41","added_by":"auto","created_at":"2025-10-27 14:53:22","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1648525,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7787251/v1/7663752a-58ee-4f29-9f59-4ba088f46bf4.pdf"},{"id":94398923,"identity":"b7d9ff0e-62e5-4a1c-9b1c-8d91a62b7dcd","added_by":"auto","created_at":"2025-10-27 13:57:16","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":67393,"visible":true,"origin":"","legend":"","description":"","filename":"SupplementaryTable1.docx","url":"https://assets-eu.researchsquare.com/files/rs-7787251/v1/a97e46c1af7c4f9c05a2cf8a.docx"}],"financialInterests":"","formattedTitle":"Quantitative Evaluation of Healthcare Information Provided to Patients with Lung Cancer: Patient Satisfaction Survey of The Japan Lung Cancer Society","fulltext":[{"header":"Key Points","content":"\u003cp\u003e\u003cstrong\u003eQuestion:\u003c/strong\u003e What sources of information do lung cancer patients find most satisfactory for treatment?\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFindings:\u003c/strong\u003e Satisfaction with treatment information was assessed from 332 lung cancer patients using the EORTC QLQ-INFO25 questionnaire. An inclination towards higher satisfaction was noted when participation in patient groups was combined with guidebooks created by academic societies.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMeaning:\u003c/strong\u003e Information from credible sources and patient associations can complement each other to boost patient satisfaction.\u003c/p\u003e"},{"header":"Introduction","content":"\u003cp\u003ePatients with lung cancer require accurate information about the disease [\u003cspan additionalcitationids=\"CR2 CR3 CR4\" citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e] regarding topics such as diagnosis, treatment, palliative care, alternative medicine, diet, and COVID-19. To fulfill this need, healthcare professionals worldwide are increasingly striving to provide such information to their patients [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e].\u003c/p\u003e\u003cp\u003e However, no guidelines for the provision of appropriate medical information to patients with lung cancer existed in Japan until the Japanese Lung Cancer Society (JLCS) published a guidebook for patients and began to conduct editorial meetings in 2018. The JLCS had been working with patients to develop treatment guidelines and provide employment assistance. For this guidebook, the JLCS editorial committee worked with specialists in lung cancer treatment, social workers, nurses, pharmacists, physical therapists, and representatives of patient advocacy groups to develop a lung cancer guidebook for patients and their families, titled \u003cem\u003eJLCS Lung Cancer Guidebook for Patients and Families\u003c/em\u003e (the \u003cem\u003eGuidebook\u003c/em\u003e) which was published in 2019. The \u003cem\u003eGuidebook\u003c/em\u003e consisted of 97 QUESTIONS AND ANSWERS, which addressed questions that patients had, answered from the perspective of experts and patient advocates. The guidebook was printed and available at bookstores, conference centers, and hospitals for patient access. In this study, we reviewed the expressions used in the \u003cem\u003eGuidebook\u003c/em\u003e based on the opinions of patient advocacy group representatives.\u003c/p\u003e\u003cp\u003eAfter publication of the \u003cem\u003eGuidebook\u003c/em\u003e, the editorial board members wanted to ascertain its usefulness for information acquisition for patients, and to incorporate their feedback into future editions of the \u003cem\u003eGuidebook.\u003c/em\u003e\u003c/p\u003e\u003cp\u003eThis study was designed and conducted to objectively and quantitatively assess whether patients are satisfied with the information provided by the JLCS \u003cem\u003eGuidebook\u003c/em\u003e.\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e\u003ch2\u003eStudy design\u003c/h2\u003e\u003cp\u003eLung cancer patients were enrolled in the trial in response to calls from patient support groups and the JLCS. Participants were asked to access and respond to an online questionnaire using SurveyMonkey\u0026reg; (\u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttp://www.surveymonkey.com\u003c/span\u003e\u003cspan address=\"http://www.surveymonkey.com\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e) between July and August 2020. Participants were stratified into two groups: those who had used the \u003cem\u003eGuidebook\u003c/em\u003e and those who had not. Participants were asked to complete the European Organization for Research and Treatment of Cancer\u0026rsquo;s (EORTC) Quality of Life of Cancer Patients 30-item questionnaire (QLQ-C30), Quality of Life 25-item information module (QLQ-INFO25), and an additional questionnaire designed by the JLCS.\u003c/p\u003e\u003cp\u003e We quantified participants\u0026rsquo; degree of satisfaction with the medical information obtained to objectively evaluate whether the level of satisfaction differs depending on participants\u0026rsquo; backgrounds and source of information. We aimed to understand how the guidelines for patients formulated by the JLCS can be improved to provide beneficial medical information for patients. We also aimed to obtain primary data, as no existing study has investigated satisfaction with medical information for patients with lung cancer.\u003c/p\u003e\u003c/div\u003e\n\u003ch3\u003eParticipants and methods\u003c/h3\u003e\n\u003cp\u003eParticipants diagnosed with lung cancer, thymic carcinoma, or malignant mesothelioma were included in the study. All patients gave their informed consent to participate in the study by completing this questionnaire. The study protocol was in accordance with the Declaration of Helsinki and approved by the institutional review board. This study has been registered with the University Medical Hospital Information Network Clinical Trials Registry under the identifier 000040984.\u003c/p\u003e\u003cdiv id=\"Sec5\" class=\"Section2\"\u003e\u003ch2\u003eStatistical analysis\u003c/h2\u003e\u003cp\u003eThe primary endpoint was to compare the level of satisfaction with the medical information obtained between the \u003cem\u003eGuidebook\u003c/em\u003e user group and the nonuser group.\u003c/p\u003e\u003cp\u003e The EORTC questionnaire was scored according to established EORTC guidelines. The \u003cem\u003et\u003c/em\u003e-test was used to compare specific ranks (scores). A multiple regression analysis was performed to adjust for confounding factors, including personal attributes such as sex, age, cancer type, stage or treatment history, and source of medical information. A sensitivity analysis with different adjustment factors was also performed as a reference. The total INFO25 and QLQ-C30 subscale scores were analyzed as secondary endpoints. Additionally, the scores on the questionnaire set by the researchers were explored.\u003c/p\u003e\u003cp\u003eAs exploratory evaluation items, free descriptions were analyzed using listing, after-coding, and text-mining methods.\u003c/p\u003e\u003c/div\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec7\" class=\"Section2\"\u003e\u003ch2\u003eParticipants\u003c/h2\u003e\u003cp\u003eWe received 332 responses from the online survey conducted. Among these, 283 were valid responses, defined as those with a response on every questionnaire item. The response rate was 85.2% (Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e).\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\u003cp\u003eThe age of the respondents ranged from 30 to 84 years, involved in a wide range of patient advocacy groups; the most common age group was between 55 and 59 years. Male and female participants accounted for 34% and 66% of the valid responses, respectively.\u003c/p\u003e\u003cp\u003eIn this survey, we asked about the \u003cem\u003eGuidebook\u003c/em\u003e readers about the timing of reading the healthcare information. The number of participants who read the Guidebook between within six months of diagnosis was slightly higher. We also asked collected information regarding the treatments they were receiving at the time of the survey. Participants were undergoing chemotherapy, molecular targeted therapy, and immune checkpoint inhibitors, as shown in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e. Approximately 20% of patients in both groups were under follow-up for disease recurrence. Very few participant questionnaire responses indicated receiving palliative treatment.\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"5\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e\u003cp\u003eUser, n\u0026thinsp;=\u0026thinsp;82\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colspan=\"2\" nameend=\"c5\" namest=\"c4\"\u003e\u003cp\u003enonUser, n\u0026thinsp;=\u0026thinsp;201\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003en\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e%\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003en\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e%\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eAge\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e30\u0026ndash;39\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3.7\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e2.0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e40\u0026ndash;49\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e13\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e15.9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e35\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e17.4\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e50\u0026ndash;59\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e33\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e40.2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e73\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e36.3\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e60\u0026ndash;69\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e20\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e24.4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e56\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e27.9\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e70\u0026ndash;79\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e12\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e14.6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e29\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e14.4\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e80+\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e1.2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e2.0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eGender\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eMale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e24\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e29.3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e72\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e35.8\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eFemale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e58\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e70.7\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e129\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e64.2\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eLength of time since diagnosis (year)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e-0.5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e11.0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e12\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e6.0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e0.5-1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e9.8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e20\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e10.0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e12\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e14.6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e31\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e15.4\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e2\u0026ndash;3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e13\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e15.9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e36\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e17.9\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e3\u0026ndash;4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e11.0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e26\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e12.9\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e4\u0026ndash;5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e12\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e14.6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e29\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e14.4\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e5\u0026ndash;10\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e13\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e15.9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e35\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e17.4\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e10+\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e7.3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e12\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e6.0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eCurrent treatment\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eObservation\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e20\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e24.4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e41\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e20.4\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eChemo\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e6.1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e53\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e26.4\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eChemo\u0026thinsp;+\u0026thinsp;ICI\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3.7\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e4.0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eChemo\u0026thinsp;+\u0026thinsp;TT\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2.4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e2.5\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eChemo\u0026thinsp;+\u0026thinsp;RT\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e1.2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e1.0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eChemo\u0026thinsp;+\u0026thinsp;Ope\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e1.2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e0.0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eChemo\u0026thinsp;+\u0026thinsp;ICI\u0026thinsp;+\u0026thinsp;RT\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e1.2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e0.0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eCHEMO\u0026thinsp;+\u0026thinsp;TT\u0026thinsp;+\u0026thinsp;PC\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e0.5\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eCHEMO\u0026thinsp;+\u0026thinsp;PC\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e1.2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eTT\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e37\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e45.1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e66\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e32.8\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eTT\u0026thinsp;+\u0026thinsp;ICI\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e0.0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e1.0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eTT\u0026thinsp;+\u0026thinsp;RT\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e1.2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e1.0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eTT\u0026thinsp;+\u0026thinsp;AM\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e0.0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e0.5\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eTT\u0026thinsp;+\u0026thinsp;PC\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e1.2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e0.5\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eICI\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e9.8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e17\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e8.5\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePC\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e0.0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e0.5\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eUndetermined\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e1.2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e0.5\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e\u003ch2\u003eSatisfaction with the guidebook among users\u003c/h2\u003e\u003cp\u003eOf the 283 valid responses, 82 (29.0%) participants indicated that they had read the \u003cem\u003eGuidebook\u003c/em\u003e. No significant differences were found between the backgrounds of users and nonusers (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). Readers were surveyed regarding their satisfaction with the \u003cem\u003eGuidebook\u003c/em\u003e content. Twenty-six (31.7%) participants indicated that they were delighted, 49 (59.8%) were reasonably satisfied, 6 (7.3%) were undecided, and 1 (1.2%) said it was not very useful (Fig.\u0026nbsp;\u003cspan refid=\"Fig2\" class=\"InternalRef\"\u003e2\u003c/span\u003e).\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\u003c/div\u003e\n\u003ch3\u003eSource of information\u003c/h3\u003e\n\u003cp\u003eNext, we asked the respondents what information sources they had used for their diseases. Of the 283 valid responses, the most common sources were the Internet (\u003cem\u003en\u003c/em\u003e\u0026thinsp;=\u0026thinsp;249, 87.7%), primary care physicians (\u003cem\u003en\u003c/em\u003e\u0026thinsp;=\u0026thinsp;202, 71.1%), patient advocacy groups (\u003cem\u003en\u003c/em\u003e\u0026thinsp;=\u0026thinsp;150, 52.8%), books (\u003cem\u003en\u003c/em\u003e\u0026thinsp;=\u0026thinsp;104, 36.6%), study groups (\u003cem\u003en\u003c/em\u003e\u0026thinsp;=\u0026thinsp;97, 34.3%), cancer consultation support centers (\u003cem\u003en\u003c/em\u003e\u0026thinsp;=\u0026thinsp;34, 34.2%), and others (\u003cem\u003en\u003c/em\u003e\u0026thinsp;=\u0026thinsp;13, 4.6%) (Fig.\u0026nbsp;\u003cspan refid=\"Fig3\" class=\"InternalRef\"\u003e3\u003c/span\u003e).\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\n\u003ch3\u003eEORTC QLQ-C30 and EORTC QLQ-INFO25 scores\u003c/h3\u003e\n\u003cp\u003eWe examined whether there was any bias in the QLQ-C30 between users and nonusers of the \u003cem\u003eGuidebook\u003c/em\u003e. The overall quality of life (QOL), function, and symptom scale scores were calculated as shown in Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e. The calculation was performed according to the scoring manual provided by the EORTC. There were no statistically significant differences in the scores between the user and nonuser groups.\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"8\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e\u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c8\" colnum=\"8\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colspan=\"2\" nameend=\"c5\" namest=\"c4\"\u003e\u003cp\u003eUser\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colspan=\"2\" nameend=\"c7\" namest=\"c6\"\u003e\u003cp\u003eNonuser\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c8\"\u003e\u003cp\u003e\u003cem\u003ep\u003c/em\u003e value\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eMean\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eSD\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003eMean\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eSD\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c8\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e\u003cp\u003eOverall QOL\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eQL2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e68.7\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e22.5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e68.0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003e23.5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c8\"\u003e\u003cp\u003e0.831\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\" morerows=\"4\" rowspan=\"5\"\u003e\u003cp\u003eFunction scale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003ePhysical function\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003ePF2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e83.9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e15.9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e83.0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003e17.2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e0.635\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eDaily life\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eRF2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e80.5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e22.2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e76.7\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003e25\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e0.204\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eEmotion\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eEF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e77.8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e19.7\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e77.4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003e17.8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e0.878\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eCognition\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eCF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e77.7\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e21.7\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e79.1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003e19.3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e0.568\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eSocial role\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eSF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e78\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e21.9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e78.5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003e24.4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e0.862\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\" morerows=\"8\" rowspan=\"9\"\u003e\u003cp\u003eSymptom scale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eFatigue\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eFA\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e36.5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e20.1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e36.0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003e22.1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e0.881\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eNausea, vomiting\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eNV\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e2.5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e6.9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e3.6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003e9.6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e0.294\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003ePain\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003ePA\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e17.6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e20.6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e17.4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003e22.4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e0.943\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eBreathing difficulties\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eDY\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e22.8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e23.4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e26.7\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003e25\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e0.215\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eInsomnia\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eSL\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e23.6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e23.1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e20.4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003e24.9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e0.304\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eAppetite loss\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eAP\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e12.1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e17.6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e15.0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003e23.4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e0.292\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eConstipation\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eCO\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e17.4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e24.8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e18.8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003e23.5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e0.570\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eDiarrhea\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eDI\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e23.1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e32.1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e18.0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003e22.9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e0.118\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eEconomic impoverishment\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eFI\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e28.7\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e32.6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e25.2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003e29.6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e0.360\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eWe then examined the level of satisfaction with medical information using the EORTC QLQ-INFO25, following the manual provided by the EORTC (Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e). In the QLQ-INFO25 scoring, the volume of each piece of data, source of information, and level of satisfaction with the data were calculated. Finally, the overall scores were calculated. As shown in Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e, there were no significant differences between the user and nonuser groups in the current analysis.\u003c/p\u003e\u003cp\u003eIn the OVERHELP individual scale of the QLQ-INFO25, we compared the scores of participants that used the \u003cem\u003eGuidebook\u003c/em\u003e with those that did not. Our focus was on patient advocacy group participation and guidebook use. The results were analyzed by dividing participants into four groups according to whether they had used the \u003cem\u003eGuidebook\u003c/em\u003e or had participated in patient meetings. Bonferroni\u0026rsquo;s multiple comparison test was conducted for the four groups on OVERHELP and the overall satisfaction index with information. Six analyses were conducted and none of the differences were statistically significant (Fig.\u0026nbsp;\u003cspan refid=\"Fig4\" class=\"InternalRef\"\u003e4\u003c/span\u003e, Supplementary Table\u0026nbsp;1). However, a \u003cem\u003et\u003c/em\u003e-test comparing those who used the patient advocacy group and the \u003cem\u003eGuidebook\u003c/em\u003e with those who used neither showed a statistically significant trend of higher satisfaction in the combined group (\u003cem\u003ep\u003c/em\u003e\u0026thinsp;=\u0026thinsp;0.039) (Fig.\u0026nbsp;\u003cspan refid=\"Fig5\" class=\"InternalRef\"\u003e5\u003c/span\u003e).\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"9\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c8\" colnum=\"8\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c9\" colnum=\"9\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colspan=\"2\" nameend=\"c5\" namest=\"c4\"\u003e\u003cp\u003eUser\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colspan=\"3\" nameend=\"c8\" namest=\"c6\"\u003e\u003cp\u003eNonuser\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c9\"\u003e\u003cp\u003e\u003cem\u003ep\u003c/em\u003e value\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eMean\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eSD\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003eMean\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c8\" namest=\"c7\"\u003e\u003cp\u003eSD\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c9\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\" morerows=\"5\" rowspan=\"6\"\u003e\u003cp\u003eInformation volume\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eDisease\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eINFODIS\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e54.4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e19.8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e53.1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c8\" namest=\"c7\"\u003e\u003cp\u003e18.1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c9\"\u003e\u003cp\u003e0.575\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eExamination\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eINFOMED\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e64.6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e24.8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e62.1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c8\" namest=\"c7\"\u003e\u003cp\u003e22.2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c9\"\u003e\u003cp\u003e0.393\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eTreatment\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eINFOTREAT\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e51.1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e17.1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e51.3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c8\" namest=\"c7\"\u003e\u003cp\u003e17.7\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c9\"\u003e\u003cp\u003e0.937\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eOther service\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eINFOTHSE\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e18.0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e18.4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e19.4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c8\" namest=\"c7\"\u003e\u003cp\u003e17.4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c9\"\u003e\u003cp\u003e0.537\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eAnother place to receive care\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eINFODIFP\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e16.1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e25.2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e21.0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c8\" namest=\"c7\"\u003e\u003cp\u003e26.5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c9\"\u003e\u003cp\u003e0.147\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eCare for recovery\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eINFOHELP\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e26.5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e28.9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e33.8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c8\" namest=\"c7\"\u003e\u003cp\u003e28.7\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c9\"\u003e\u003cp\u003e0.051\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e\u003cp\u003eSource of information\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eDocument\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eINFOWRIN\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e69.5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e46.3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e75.1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c8\" namest=\"c7\"\u003e\u003cp\u003e43.3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c9\"\u003e\u003cp\u003e0.333\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eCD, Video\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eINFOCD\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e22.0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e41.6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e22.4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c8\" namest=\"c7\"\u003e\u003cp\u003e41.8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c9\"\u003e\u003cp\u003e0.730\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\" morerows=\"2\" rowspan=\"3\"\u003e\u003cp\u003eDegree of satisfaction\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eAmount of information\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eSATINFO\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e40.7\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e27.7\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e40.3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c8\" namest=\"c7\"\u003e\u003cp\u003e25.5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c9\"\u003e\u003cp\u003e0.918\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eMore amount of information\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eRECMORE\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e18.3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e38.9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e28.4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c8\" namest=\"c7\"\u003e\u003cp\u003e45.2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c9\"\u003e\u003cp\u003e0.078\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eMore less information\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eRECLESS\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e96.3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e18.9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e97.0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c8\" namest=\"c7\"\u003e\u003cp\u003e17.1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c9\"\u003e\u003cp\u003e0.771\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eDid the information help?\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eOVERHELP\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e58.9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e26.9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e54.7\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c8\" namest=\"c7\"\u003e\u003cp\u003e22.1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c9\"\u003e\u003cp\u003e0.173\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e\u003cp\u003eOverall score\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eGlobal score\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e44.8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e14.8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e46.7\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003e13.3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c9\" namest=\"c8\"\u003e\u003cp\u003e0.288\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study is the first to collect quantitative data on the medical information obtained from patients with lung cancer and contributes to the literature because previous studies have not quantitatively assessed the level of satisfaction with the medical information provided by healthcare professionals. As of December 1, 2021, a PubMed search for INFO25 yielded 42 results; however, no studies had examined patients with lung cancer [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. In addition, several guidelines for patients have been prepared by professional societies and government organizations, but no previous study has quantitatively verified the usefulness of these guidelines. We examined whether the data obtained from the JLCS \u003cem\u003eGuidebook\u003c/em\u003e directly led to patient satisfaction in information acquisition. Overall, over 90% of \u003cem\u003eGuidebook\u003c/em\u003e users were satisfied with the content. The results showed that the \u003cem\u003eGuidebook\u003c/em\u003e fulfilled a particular role.\u003c/p\u003e\u003cp\u003eHowever, we found no statistically significant difference in satisfaction between users and nonusers of the \u003cem\u003eGuidebook\u003c/em\u003e. This can be attributed to several factors. First, because the survey was conducted using an Internet questionnaire, it is assumed that patients who were proficient in using the Internet mainly participated. Most respondents were 55\u0026ndash;59 years old, which is considered younger than the average age of patients with lung cancer in Japan [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]. Therefore, we believe that many respondents had already collected information via the Internet before receiving the \u003cem\u003eGuidebook.\u003c/em\u003e For patients who were capable of gathering information from the Internet, some felt that the information provided in the \u003cem\u003eGuidebook\u003c/em\u003e needed to be improved.\u003c/p\u003e\u003cp\u003eVery few participants reported receiving palliative care in parallel with systemic chemotherapy or molecular targeted therapy (users, 2.4%; nonusers, 1%). Although we advocate and promote palliative care from the time of diagnosis, patients undergoing treatment may not feel that they are also receiving sufficient (or any) palliative care. The treating team staff should provide treatment options as well as information to ensure that patients receive effective palliative care.\u003c/p\u003e\u003cdiv id=\"Sec12\" class=\"Section2\"\u003e\u003ch2\u003eLimitations\u003c/h2\u003e\u003cp\u003eThis study has some limitations. The survey was conducted after the publication of the JLCS \u003cem\u003eGuidebook\u003c/em\u003e. The number of cases in this survey was insufficient to provide all \u003cem\u003eGuidebook\u003c/em\u003e users the opportunity to participate in the study. In addition, our call for study participants was facilitated through the publicity efforts of patient advocacy groups and academic societies, which undeniably contributed to selection bias of respondents.\u003c/p\u003e\u003cp\u003eNext, although the JLCS \u003cem\u003eGuidebook\u003c/em\u003e was published in paper format, the questionnaire survey was conducted in digital format. The survey respondents were relatively young. According to past reports, the most common age group of lung cancer patients in Japan is reported to be 70\u0026ndash;79 years old [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. The participants in this study were most frequently 50\u0026ndash;59 years old, and thus differed from the background of typical lung cancer patients in Japan. Users who preferred print books to digital books were likely to be slightly older. Therefore, the age of the participants may have affected the results, as noted in previous studies [\u003cspan additionalcitationids=\"CR13\" citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. It may be necessary to include a questionnaire in future studies to reach more people unfamiliar with the Internet [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e, \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. In addition, the \u003cem\u003eGuidebook\u003c/em\u003e content was relatively introductory and basic. It may be that much of the content is relatively easy for patients acquiring information through self-study, such as those participating in patient advocacy groups.\u003c/p\u003e\u003cp\u003eThe EORTC QLQ-INFO25 also needs to be updated. This questionnaire includes the item \u0026ldquo;information collection through CDs and videos,\u0026rdquo; which suggests the information collection methods of a slightly earlier era [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. Internet use is now ubiquitous, and the use of alternatives, such as artificial intelligence, and patient education using interactive communication networks and networking among patients and between patients and medical professionals has become increasingly widespread [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. We consider that the EORTC QLQ INFO25 questionnaire may need to be revised to assess the effectiveness of the current information collection tool.\u003c/p\u003e\u003cp\u003eThe study endpoint\u0026mdash;patient satisfaction with information acquisition\u0026mdash;must be interpreted with caution. The study is based on data obtained from a questionnaire, which has some limitation, such as bias in the target population. Based on the primary data obtained in this study, we believe that future efforts should provide medical and healthcare information materials with higher-quality medical validity to achieve an even higher level of patient satisfaction.\u003c/p\u003e\u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis study is the first quantitative national survey of the need for medical information among patients with lung cancer using the EORTC QLQ-INFO25.\u003c/p\u003e\u003cp\u003eWe found that guidebooks developed with the participation of academic societies and patient advocacy groups were considered reliable sources of information. Furthermore, multiple reliable sources of information\u0026mdash;such as information provided by patient support groups and experts\u0026mdash;led to higher satisfaction. In the future, we must consider how to provide information in a manner that reflects the various backgrounds of patients, such as age and the level of information sought.\u003c/p\u003e\u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eRole of the funding source\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis research was supported by the Japan Lung Cancer Society.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eDr. Sawa had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis. Concept and design: Takahama, Shimizu and Sawa. Acquisition, analysis, or interpretation of data: Takahama, Shimizu and Sawa. Drafting of the manuscript: Takahama, Shimizu and Sawa. Critical review of the manuscript for important intellectual content: All the authors. Statistical analysis: Yoshimura, Takahama, Shimizu and Sawa. Obtained funding: Takahama, Shimizu, Sawa and Oizumi. Administrative, technical, or material support: Takahama, Shimizu, Sawa and Oizumi. Supervision: Sawa.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eDeclaration of interest statement\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eDr Takahama reported receiving grant funding from Takeda Pharmaceutical Company Limited during the conduct of the study and personal fees from AstraZeneca, Chugai Pharmaceutical Co Ltd, Roche Diagnostics, and MSD and grant funding from Pfizer Inc and Takeda outside the submitted work. Dr Yoshimura reported receiving grant funding from Boehringer Ingelheim\u0026nbsp;and personal fees from Chugai Pharma, Astra Zeneca and Taiho. Dr Horinouchi reported receiving grant funding from AstraZeneca, Roche/Chugai, MSD, AbbVie, BMS/Ono, Daiichi-Sankyo and personal fees from AstraZeneca, Roche/Chugai, MSD, Bristol-Myers Squibb/Ono, AbbVie. Dr Kaneda reported receiving grant funding from Eli Lilly and personal fees from Chugai, AstraZeneca, MSD, Bristol-Myers Squibb, Novartis Pharma, Eli Lilly, Ono, Takeda. Dr Watanabe reported receiving grant funding from Pfizer. Dr Hayashi reported receiving grant funding from IQVIA Services JAPAN K.K., Eisai Co., Ltd., SYNEOS HEALTH CLINICAL K.K. EP-CRSU CO., LTD., EPS Corporation., Shionogi \u0026amp; Co., Ltd., Nippon Kayaku Co.,Ltd., Otsuka Pharmaceutical Co., Ltd., Takeda Pharmaceutical Co.,Ltd. GlaxoSmithKline K.K., MSD K.K., Sanofi K.K., Amgen Inc., Chugai Pharmaceutical Co.,Ltd., Taiho Pharmaceutical Co.,Ltd., Nippon Boehringer Ingelheim Co.,Ltd., Bristol Myers Squibb Company, SRL Medisearch Inc., Janssen Pharmaceutical K.K., PRA Health Sciences Inc., CMIC CO., Ltd., Astellas Pharma Inc., Pfizer R\u0026amp;D Japan G.K., Ascent Development Services, Labcorp Development Japan K.K., Eisai Inc., Kobayashi Pharmaceutical Co., Ltd., Bayer Yakuhin, Ltd, Pfizer Japan Inc., AstraZeneca K.K., AbbVie Inc., Daiichi Sankyo Co., Ltd., A2 Healthcare Corp., Novartis Pharma K.K., Eli Lilly Japan K.K., Merck Biopharma Co., Ltd, Medpace Japan K.K., Kyowa Kirin Co.,Ltd., Japanese Gastric Cancer Association Thoracic Oncology Research Group, Clinical Research Support Center Kyushu, West Japan Oncology Group, Japan Clinical Caner Research Organization, Comprehensive Support Project for Oncological Research of Breast Cancer, EPS International Co.,Ltd,., Mebix, Inc., Ono Pharmaceutical Co.,Ltd., Mochida Pharmaceutical Co., Ltd., Covance Japan Inc., Japan Clinical Research Operations, Medical Reserch Support and personal fees from Ono Pharmaceutical Co.,Ltd., Merck Biopharma Co., Ltd., Daiichi Sankyo Co., Ltd., 3H Clinical Trial Inc., AstraZeneca K.K., Novartis Pharma K.K., Chugai Pharmaceutical Co.,Ltd. Bristol Myers Squibb Company, Eli Lilly Japan K.K.,Amgen Inc., MSD K.K., Sysmex Corporation, Pfizer Japan Inc., Takeda Pharmaceutical Co., Ltd., Nippon Boehringer Ingelheim Co.,Ltd., Janssen Pharmaceutical K.K., Guardant Health Japan Corp. Dr Yoshida reported receiving personal fees from DAIICHI SANKYO COMPANY, LIMITED, Hisamitsu Pharmaceutical Co., Inc. Mr Kazuo Hasegawa is paid Chairperson of the Board of advocacy group “Lung Cancer Pateient Network ONE STEP”. Dr Oizumi reported receiving grants from Abbvie, Amgen, AstraZeneca, Bristol-Myers Squibb, Chugai Pharmaceutical, Daiichi-Sankyo, Pfizer, MSD, Sanofi, Taiho Pharmaceutical, Takeda Pharmaceutical and personal fees from AstraZeneca, Chugai Pharmaceutical, MSD, Takeda Pharmaceutical. Dr Gemma reported receiving consulting fee from Nihon Kayaku and personal fee from Daiichi Sankyo, AstraZeneca.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgments\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe thank all the patients, clinical staff, and the Japanese Lung Cancer Society for contributing to this research.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData availability statement\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAll data generated or analyzed during this study are included in this published article and its supplementary information files.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthics statement\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe research related to human use has been complied with all the relevant national regulations, institutional policies and in accordance the tenets of the Helsinki Declaration and has been approved by the authors' institutional review board or equivalent committee.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eDeclaration of generative AI and AI-assisted technologies\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eDuring the preparation of this work,\u0026nbsp;the authors\u0026nbsp;did not\u0026nbsp;used\u0026nbsp;AI and AI-assisted technologies.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eFallowfield L, Ford S, Lewis S. Information preferences of patients with cancer. Lancet 1994;344(8936):1576. https://doi.org/10.1016/S0140-6736(94)90386-7\u003c/li\u003e\n\u003cli\u003eBr\u0026eacute;dart A, Bouleuc C, Dolbeault S. Doctor\u0026ndash;patient communication and satisfaction with care in oncology. Curr Opin Oncol. 2005;17(4). https://journals.lww.com/co-oncology/Fulltext/2005/07000/Doctor_patient_communication_and_satisfaction_with.7.aspx\u003c/li\u003e\n\u003cli\u003eFallowfield L. Giving sad and bad news. Lancet 1993;341(8843):476\u0026ndash;478. https://doi.org/10.1016/0140-6736(93)90219-7\u003c/li\u003e\n\u003cli\u003eBaile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. SPIKES\u0026mdash;A Six‐step protocol for delivering bad news: Application to the patient with cancer. Oncologist 2000;5(4):302\u0026ndash;311. https://doi.org/10.1634/theoncologist.5-4-302\u003c/li\u003e\n\u003cli\u003ede Valck C, van de Woestijne KP. Communication problems on an oncology ward. Patient Educ Couns 1996;29(2):131\u0026ndash;136. https://doi.org/10.1016/0738-3991(96)00908-1\u003c/li\u003e\n\u003cli\u003eNational Comprehensive Cancer Network (NCCN). NCCN guidelines for patients. https://www.nccn.org/patientresources/patient-resources/guidelines-for-patients\u003c/li\u003e\n\u003cli\u003eEuropean Society for Medical Oncology (ESMO). Cancer guides for patients. https://www.esmo.org/for-patients/patient-guides\u003c/li\u003e\n\u003cli\u003eSearch results. https://pubmed.ncbi.nlm.nih.gov/?term=INFO25\u003c/li\u003e\n\u003cli\u003eNakamura K, Ukawa S, Okada E, et al. Characteristics and prognosis of Japanese male and female lung cancer patients: The BioBank Japan Project. J Epidemiol. 2017;27(3):S49\u0026ndash;S57. https://doi.org/10.1016/j.je.2016.12.010\u003c/li\u003e\n\u003cli\u003eOkami J, Shintani Y, Okumura M, et al. Demographics, safety and quality, and prognostic information in both the seventh and eighth editions of the TNM classification in 18,973 surgical cases of the Japanese Joint Committee of Lung Cancer Registry database in 2010. J Thorac Oncol. 2019;14(2):212\u0026ndash;222. https://doi.org/10.1016/j.jtho.2018.10.002\u003c/li\u003e\n\u003cli\u003eHorinouchi H, Kusumoto M, Yatabe Y, Aokage K, Watanabe S\u0026ndash;I, Ishikura S. Lung cancer in Japan. J Thorac Oncol. 2022;17(3):353\u0026ndash;361. https://doi.org/10.1016/j.jtho.2021.11.020\u003c/li\u003e\n\u003cli\u003eCaruso A, di Francesco B, Pugliese P, Cinanni V, Corlito A. Information and awareness of diagnosis and progression of cancer in adult and elderly cancer patients. Tumori 2000;86(3):199\u0026ndash;203. https://doi.org/10.1177/030089160008600304\u003c/li\u003e\n\u003cli\u003ePinquart M, Duberstein PR. Information needs and decision-making processes in older cancer patients. Crit Rev Oncol Hematol. 2004;51(1):69\u0026ndash;80. https://doi.org/10.1016/j.critrevonc.2004.04.002\u003c/li\u003e\n\u003cli\u003eArraras JI, Manterola A, Hern\u0026aacute;ndez B, et al. The EORTC information questionnaire, EORTC QLQ\u0026ndash;INFO25. Validation study for Spanish patients. Clin Transl Oncol. 2011;13(6):401\u0026ndash;410. https://doi.org/10.1007/s12094-011-0674-1\u003c/li\u003e\n\u003cli\u003evan Weert JCM, Bolle S, van Dulmen S, Jansen J. Older cancer patients\u0026rsquo; information and communication needs: What they want is what they get? Patient Educ Couns. 2013;92(3):388-397. https://doi.org/10.1016/j.pec.2013.03.011\u003c/li\u003e\n\u003cli\u003ePuts MTE, Papoutsis A, Springall E, Tourangeau AE. A systematic review of unmet needs of newly diagnosed older cancer patients undergoing active cancer treatment. Support Care Cancer 2012;20(7):1377\u0026ndash;1394. https://doi.org/10.1007/s00520-012-1450-7\u003c/li\u003e\n\u003cli\u003eRutten LJF, Arora NK, Bakos AD, Aziz N, Rowland J. Information needs and sources of information among cancer patients: A systematic review of research (1980\u0026ndash;2003). Patient Educ Couns. 2005;57(3):250\u0026ndash;261. https://doi.org/10.1016/j.pec.2004.06.006\u003c/li\u003e\n\u003cli\u003eMaddock C, Camporesi S, Lewis I, Ahmad K, Sullivan R. Online information as a decision making aid for cancer patients: Recommendations from the Eurocancercoms project. Eur J Cancer. 2012;48(7):1055\u0026ndash;1059. https://doi.org/10.1016/j.ejca.2011.08.018\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":true,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"international-journal-of-clinical-oncology","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"ijco","sideBox":"Learn more about [International Journal of Clinical Oncology](http://link.springer.com/journal/10147)","snPcode":"10147","submissionUrl":"https://www.editorialmanager.com/ijco/default2.aspx","title":"International Journal of Clinical Oncology","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"Information for the patients, Questionnaire, EORTC QLQ-INFO25, Patient guidebook, Patient information guide, Patient advocacy","lastPublishedDoi":"10.21203/rs.3.rs-7787251/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7787251/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground:\u003c/strong\u003e Healthcare professionals are increasingly providing medical information to patients. However, few objective evaluations of the information’s usefulness exist. This study posited that analyzing objective, quantified data facilitates future information provision. Our questionnaire survey on patient satisfaction with medical information using the European Organization for Research and Treatment of Cancer’s (EORTC) Quality of Life 25-item information module (QLQ-INFO25) was unprecedented in Japan.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods:\u003c/strong\u003e Lung cancer patients were enrolled in the trial in response to calls from patient support groups and the Japanese Lung Cancer Society. Patient satisfaction was based on information obtained from the 2019\u003cem\u003e \u003c/em\u003eJapanese Lung Cancer Society’s patient guidebook and a web-based survey of patients with lung cancer. Satisfaction with the information was analyzed based on EORTC QLQ-INFO25 scores and stratified into user and nonusers of the guidebook.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults:\u003c/strong\u003e Of 332 participants (110 male, 222 female), 283 (85.2%) completed the questionnaire, among which, 170 (60.1%) respondents participated in the patient advocacy group and 82 (29.0%) read the guidebook. Participants found the research through online sources or by responding to an invitation from their primary physician or patient support group. Seventy-one users (91%) were satisfied with the guidebook content as shown by the individual scale score on the QLQ–INFO25. No statistically significant differences were observed based on the presence or absence of information in the guidebook. Subgroup analysis revealed a trend toward greater satisfaction among participants that joined the patient group and used the guidebook.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusions:\u003c/strong\u003e Guidebooks and patient advocacy groups are effective in providing information to patients. Our results provide an objective basis for discussing information provision for patients with lung cancer. Strategies should be developed to communicate information reflecting patients’ diverse backgrounds.\u003c/p\u003e","manuscriptTitle":"Quantitative Evaluation of Healthcare Information Provided to Patients with Lung Cancer: Patient Satisfaction Survey of The Japan Lung Cancer Society","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-10-26 01:18:35","doi":"10.21203/rs.3.rs-7787251/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Major revisions","date":"2025-11-20T05:37:22+00:00","index":"","fulltext":""},{"type":"reviewerAgreed","content":"","date":"2025-10-20T05:35:10+00:00","index":0,"fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-10-12T10:47:40+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-10-11T14:00:26+00:00","index":"","fulltext":""},{"type":"submitted","content":"International Journal of Clinical Oncology","date":"2025-10-05T21:31:50+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"international-journal-of-clinical-oncology","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"ijco","sideBox":"Learn more about [International Journal of Clinical Oncology](http://link.springer.com/journal/10147)","snPcode":"10147","submissionUrl":"https://www.editorialmanager.com/ijco/default2.aspx","title":"International Journal of Clinical Oncology","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false}}],"origin":"","ownerIdentity":"349ad1aa-55ce-467f-9b9a-ea6d96c327ad","owner":[],"postedDate":"October 26th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-04-29T11:20:20+00:00","versionOfRecord":[],"versionCreatedAt":"2025-10-26 01:18:35","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-7787251","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7787251","identity":"rs-7787251","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}

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