Patient Followup After Radical Prostatectomy by Internet Medical File

0022-5347/03/1706-2284/0 THE JOURNAL OF UROLOGY® Copyright © 2003 by AMERICAN UROLOGICAL ASSOCIATION

Vol. 170, 2284 –2287, December 2003 Printed in U.S.A.

DOI: 10.1097/01.ju.0000095876.39932.4a

PATIENT FOLLOWUP AFTER RADICAL PROSTATECTOMY BY INTERNET MEDICAL FILE NATHALIE CATHALA,* FRANC ¸ OIS BRILLAT, ANNICK MOMBET, ELIE LOBEL, DOMINIQUE PRAPOTNICH, LAURENT ALEXANDRE AND GUY VALLANCIEN† From the Department of Urology, Institut Montsouris, University Pain V, Paris, France

ABSTRACT

Purpose: The development of the Internet and the need for regular followup of patients often living a long way from the hospital led us to develop a followup dossier for those with localized prostate cancer treated with laparoscopic radical prostatectomy. Materials and Methods: This feasibility study was based on 140 patients who agreed to test this system. The website was opened on a server specifically devoted to this project with all required computer security. The website is composed of pages comprising the hospital discharge summary, and operative and histology reports. A quality of life questionnaire based on the assessment of urinary continence and sex life, and a prostate specific antigen (PSA) assay form are also included. Results: The patient is able to enter his PSA data and complete the questionnaire at home. Results are then sent to the treating physician. A contact page allows the patient and physician to exchange information by text. Of these 100 patients 92 connected regularly to the site with a mean connection rate of 8 per patient (range 1 to 22). Of the patients 98% were satisfied with the various sections of the site, 95% were satisfied with the medical file, 11% noticed connection problems and 14% reported technical problems essentially attributable to incorrect PSA data entry or incorrect functioning of videos due to the absence of appropriate software. Conclusions: This type of Internet medical service for patients who have undergone surgery requiring regular followup appears to be a useful approach for the future by allowing the maintenance of close contact between the patient and physicians, while avoiding problems related to hospital visits regardless of the patient place of residence. It also provides general practitioners with access to the patient file with patient permission. KEY WORDS: prostate; prostatic neoplasms; prostatectomy; Internet; medical records systems, computerized

The frequency of transmission of medical information by the Internet is increasing daily, as reflected by the growing number of professional and general public websites, and the development of e-mail data transfer. Internet modifies the relationship between health care professionals and patients, and provides new communication possibilities that may probably change the organization of the health care system. Some sites invite patients to enter medical information on a secure on-line file with access protected by password and data coding. We developed an electronic on-line file to facilitate the management of an increasing number of patients treated for prostate cancer. We report our experience with the first 140 patients who agreed to test this system. MATERIAL AND METHOD

A preliminary feasibility study was conducted done at our institutional outpatient department from January to March 2000 to evaluate patient habits and desires in relation to computerized medical files. A total of 200 consecutive patients completed a questionnaire concerning their various modalities of medical information, Internet connection habits and interest in a secure medical file with on-line communication via the Internet. Replies were evaluated as a function of the various types of urological disease. Following this

study we invited patients with localized prostate cancer treated with radical prostatectomy at our department between November 2000 and November 2001 to test their computerized on-line file. The file was opened during the patient hospital admission following surgery for all patients with Internet access. Patients use a login and a password to access a secure site comprising medical information and on-line communication with the surgical team. The site is housed on a server at Medcost, Paris, France. The data base is also stored on the server and it is interfaced with the patient medical file. Server access is protected by a firewall system installed between the Medcost Intranet network and the World Wide Web, ensuring control of data transmission, while preventing any intrusion inside the network and any data leak to the Internet. The entire site is subject to protected access (fig. 1). A correspondence table housed at our institution correlates patient administrative information with the login and password. This table is situated on a nonshared hard disk with triple logical protection, including table file coding by software, and a file access and a computer access password. The medical file is created in French or English by a physician at our institution, who enters his or her login and password to open a page to create a new file or consult and modify an already existing file. New file creation generates a random login and a password chosen by the patient is attributed. These data are sent to the patient by conventional mail with the address of the site on a paper card. The patient must enter his login and password to enter the site. A first warning message indicates Commission Nationale d’Informatique et

Accepted for publication July 18, 2003. Study received institutional review board approval. * Corresponding author: Institut Mutualiste Montsouris, 42 Bd. Jourdan, 75014 Paris, France, (telephone: 33 1 56 61 66 27; FAX: 33 1 56 61 66 40; e-mail: [email protected]). † Financial interest and/or other relationship with Sanofi and EDAP. 2284

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FIG. 1. Network with server protected by firewall system

de Liberte´ approval and explains the value of the file as a means of communication with the medical team treating the patient. A prostate cancer treatment section with diagnostic and therapeutic procedures provides information on the disease. It describes the methods of diagnosis and staging by presenting examples of medical imaging (computerized tomography, bone scan, etc.) and treatment options. A radical prostatectomy section presents the history of surgery and describes the operative technique, postoperative recommendations, results and complications. Video sequences illustrate the operation and a glossary explains the various medical terms, making the site accessible to the nonprofessional public. When the patient wants access to his medical file, he clicks on the site. This section allows the patient to consult his various hospital discharge summaries, and operative and histology reports (figs. 2 to 4). For medical followup purposes the patient is also able to complete another 3 sections, including a prostate specific antigen (PSA) curve for entering of

FIG. 3. Operative report

FIG. 4. Hospital discharge report

FIG. 2. Prostate biopsy report with 2 positive results on right apex and medial area.

PSA assay results at the various phases of medical followup (fig. 5). The patient can also regularly complete a quality of life questionnaire on continence and sexuality, and he has access to a physician-patient dialogue zone, allowing him to express any comments at any time (figs. 6 and 7). A number of warning messages can be given to the patient concerning the arrival of a new message in the dialogue zone, or the need to enter a PSA result or complete the quality of life questionnaire. Finally, patient entry of any new data automatically generates e-mail, which is sent to his physician of choice.

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FIG. 7. Physician-patient dialogue zone FIG. 5. PSA curve of patient with slow increase after 20 months

FIG. 6. Quality of life questionnaire at 3 months

An anonymous quarterly connection report allows evaluation of the system. Questionnaires sent by conventional mail assess any technical problems as well as the patient level of satisfaction with use of the various sections, PSA data entry, quality of life questionnaires and the dialogue zone. A financial assessment of the project was performed by Medcost and a cost-effectiveness assessment was done by the surgical team. RESULTS

The preliminary feasibility study demonstrated a high level of patient satisfaction with the on-line medical file. Of the patients with various urological diseases 162 (31%) considered that the Internet was a good means of medical infor-

mation, as did 126 (63%) with prostatic disease. Of the patients with prostatic disease 31% had Internet access and 48% (96) were in favor of receiving their medical file on line. Of the patients with localized prostate cancer and Internet access 95% provided consent to the establishment of a secure on-line file. Between November 2000 and April 2002, 140 of the 508 patients who underwent radical prostatectomy had a computer at home and agreed to be included in this study. Mean age was 63 years (range 46 to 70). Of the patients 12% were from Paris, 36% were from the Ile-de-France region, 34% were from other parts of France and 18% were from other countries. Analysis of the various occupations showed a population of 58% senior executives and professionals, and 12% tradesmen, comprising a well informed population. The data base derived from the management of secure on-line medical files allowed analysis of statistical results concerning the patient profile, oncological data and results. The connection report system allowed evaluation of the first 6 months of the study. Of the patients 95% regularly consulted the website with a mean of 8 connections per patient (range 1 to 22), corresponding to entry of the results of 2 PSA assays, 4 quality of life questionnaires and 2 dialogue zone messages. PSA assays and completion of the quality of life questionnaire are usually performed at 1 and 6 months postoperatively during medical followup but 25% of the patients completed the questionnaire more often than required by the physician, while 6% sent more than 2 messages in the physician-patient dialogue zone. A patient satisfaction questionnaire was sent by conventional mail to all patients and 79.5% replied, of whom 98% were satisfied with the various site sections, 94% were satisfied with the medical file, 11% had problems accessing the site and 14% reported technical problems essentially attributable to incorrect PSA data entry or incorrect video functioning due to the absence of appropriate software. For 2 patients entry of a decimal point instead of a comma when entering PSA results was not accepted by the software. A surprising PSA result, which was incorrectly entered by the patient, generated a verification message by the physician, possibly with another PSA assay. No intrusion into the website was detected. Each new file is currently entered by a secretary, requiring

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an average of 10 minutes. It is then verified by the physician before being placed on line. Reading and replying to patient messages requires an average of 5 minutes for the physician and secretary, respectively. The secretary must provide a paper copy for the patient file and send a followup prescription by conventional mail. This time is compensated for by the speed of replies, avoiding the need to open stored files, or make telephone calls and visits. This experimental system is not remunerated because medical consultations without the physical presence of the patient are not currently recognized in France. The cost of the project, including site housing and management, is estimated to be 7,500 Euros.

In the event of problems affecting quality of life an appointment is made by Internet to follow the patient at the outpatient department. The open dialogue zone of the website allows the patient to express freely his needs, anxiety or satisfaction. The generally rapid physician reply (average 48 hours) greatly adds to patient satisfaction. The patient file can also be examined by other physicians caring for the patient, such as the general practitioner or other specialists. General practitioners are actively involved in the development of medical Internet6 because general practitioner access to all laboratory results and specialist comments avoids duplicate prescriptions.5, 7 Finally, patient use of his on-line file reinforces the principle of the patient right of access to all data concerning personal health.

DISCUSSION

A preliminary study comprising 200 urology patients with or without a computerized file showed that 38% favored of an on-line computerized medical file. This incidence was 48% for patients with prostatic disease. Therefore, these rates encouraged us to pursue development of this project. A feasibility study done at Stanford evaluated e-mail followup of patients with 2 types of disease, namely gastroduodenal ulcers and benign prostatic hyperplasia, of whom 28% and 48%, respectively, regularly used the Internet system for followup.1 Surprisingly, older patients used the e-mail followup system more frequently than younger patients. The demand for e-mail followup was greater when patients lived far from the hospital. Some websites now propose the establishment of an on-line medical file, such as WebMD in the United States, while ensuring the security and confidentiality of data. Servers housing these files are equipped with firewall systems, logins, passwords and coding techniques. A card indicating the patient password also allows access to the file in case of a medical emergency. Consequently, in contrast to a widely held belief, telecommunication encourages patients to take a greater interest in their care.2 Studies have demonstrated the high level of satisfaction of patients with telemedicine services.3, 4 A recent study comparing patient followup by conventional consultations or teleconsultations showed a difference in the level of satisfaction according to the medical specialty concerned.5 Surgical specialties, especially urology, showed the highest levels of satisfaction with telecommunication. In our experience the use of teleconsultations by patients with prostate cancer treated with radical prostatectomy is a good example of the use of medical Internet. Patients are followed at the outpatient department between 1 and 2 months after the operation. When no postoperative problems are noted, subsequent followup simply consists of PSA assays and quality of life questionnaires on continence and sex life.

CONCLUSIONS

This type of Internet medical service for patients who have undergone surgery requiring regular followup appears to be a useful approach for the future by allowing the maintenance of close contact between the patient and physicians, while avoiding problems related to hospital visits regardless of the patient place of residence. It also provides general practitioners with access to the patient file with patient permission. This type of Internet followup is possible only for a certain type of pathological condition and with acknowledged informed patients. In the future it may probably become useful for following patients with localized prostate cancer. REFERENCES

1. Harewood, G. C., Yacavone, R. F., Locke, G. R., 3rd and Wiersema, M. J.: Prospective comparison of endoscopy patient satisfaction surveys: e-mail versus standard mail versus telephone. Am J Gastroenterol, 96: 3312, 2001 2. Taylor, P. A.: Survey of research in telemedicine. 2: Telemedicine services. J Telemed Telecare, 4: 63, 1998 3. Mair, F. and Whitten, P.: Systematic review of studies of patients satisfaction with telemedicine. BMJ, 320: 1517, 2000 4. Harrison, R., Clayton, W. and Wallace, P.: Can telemedicine be used to improve communication between primary and secondary care? BMJ, 313: 1377, 1996 5. Wallace, P., Haines, A., Harrison, R., Barber, J., Thompson, S., Jacklin, P. et al: Joint teleconsultations (virtual outreach) versus standard outpatient appointments for patients referred by their general practitioner for a specialist opinion: a randomised trial. Lancet, 359: 1961, 2002 6. Snowden, S., Harrison, R. and Wallace, P.: General practitioner participants in a telemedicine trial: comparisons with their peers. J Telemed Telecare, 7: 32, 2001 7. Wallace, P., Haines, A., Harrison, R., Barber, J. A., Thompson, S., Roberts, J. et al: Design and performance of a multicentre randomised controlled trial and economic evaluation of joint tele-consultations. [ISRCTN54264250]. BMC Fam Pract, 3: 1, 2002