Background <p>Healthcare professionals are increasingly providing medical information to patients. However, few objective evaluations of the information’s usefulness exist. This study aimed to evaluate patient satisfaction with medical information sources, including the JLCS Guidebook and patient advocacy groups, using the European Organization for Research and Treatment of Cancer’s (EORTC) Quality of Life 25-item information module (QLQ-INFO25).</p> Methods <p>Patients with thoracic malignancies 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 using EORTC QLQ-INFO25 scores and stratified by guidebook use (users vs. non-users).</p> Results <p>Of 332 participants (110 male, 222 female), 283 (85.2%) completed the questionnaire, among which 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 indicated by their individual QLQ–INFO25 scale scores. No statistically significant differences were observed between guidebook users and non-users; however, a trend toward higher satisfaction was noted among participants who used both the guidebook and advocacy groups.</p> Conclusions <p>Our findings suggest that guidebooks and advocacy groups may contribute to improved patient satisfaction; however, further controlled studies are warranted. 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.</p>

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Quantitative evaluation of healthcare information provided to patients with thoracic malignancies: patient satisfaction survey of the Japan Lung Cancer Society

  • Takayuki Takahama,
  • Hidefumi Shimizu,
  • Kenichi Yoshimura,
  • Hidehito Horinouchi,
  • Hiroyasu Kaneda,
  • Kiyotaka Watanabe,
  • Hiromi Aono,
  • Keiko Tanaka,
  • Seiki Hasegawa,
  • Tomohiro Osawa,
  • Hidetoshi Hayashi,
  • Takeshi Yoshida,
  • Yasuhisa Ohde,
  • Tomoki Kimura,
  • Mitsutoshi Akiho,
  • Hatoe Sakamoto,
  • Mayumi Ito,
  • Kazuo Hasegawa,
  • Koji Onishi,
  • Jiichiro Sasaki,
  • Satoshi Oizumi,
  • Tetsuya Mitsudomi,
  • Akihiko Gemma,
  • Toshiyuki Sawa

摘要

Background

Healthcare professionals are increasingly providing medical information to patients. However, few objective evaluations of the information’s usefulness exist. This study aimed to evaluate patient satisfaction with medical information sources, including the JLCS Guidebook and patient advocacy groups, using the European Organization for Research and Treatment of Cancer’s (EORTC) Quality of Life 25-item information module (QLQ-INFO25).

Methods

Patients with thoracic malignancies 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 using EORTC QLQ-INFO25 scores and stratified by guidebook use (users vs. non-users).

Results

Of 332 participants (110 male, 222 female), 283 (85.2%) completed the questionnaire, among which 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 indicated by their individual QLQ–INFO25 scale scores. No statistically significant differences were observed between guidebook users and non-users; however, a trend toward higher satisfaction was noted among participants who used both the guidebook and advocacy groups.

Conclusions

Our findings suggest that guidebooks and advocacy groups may contribute to improved patient satisfaction; however, further controlled studies are warranted. 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.