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The Drug Information Center Arthritis Project: Providing Patients With Interactive and Reliable Arthritis Internet Education

Posted on: Saturday, 4 March 2006, 03:03 CST

By Ansani, Nicole T; Fedutes-Henderson, Bethany A; Weber, Robert J; Smith, Randall; Et al

The objective of the Drug Information Center Arthritis Project was to create and assess the value of a patient-focused interactive arthritis education program. A multidisciplinary team developed three content areas: an interactive ask-a-pharmacist component with a satisfaction survey; health assessment tools (SF-8(TM), osteoarthntis [QA] Impact Survey(TM), and rheumatoid arthritis [RA] Impact Survey(TM)); and disease and drug information. Results: There were 1,800 patients with OA, RA, or both from a collaborating rheumatology practice who were invited to use a personalized, interactive, secured Internet arthritis Web site. During a 6-week pilot, 56 patients accessed the site for a total of 128 visits. Patient satisfaction scores showed that 83% of patients rated the site as useful to very useful; 83% would both use the site again and recommend the site to a friend. Overall health-related quality of life as measured by the SF-8 physical and mental component scores and the OA and RA Impact Surveys for patients accessing the Web site was slightly higher than the US population norms for patients with arthntis. Conclusions: To our knowledge, there are no other Web sites that provide confidential, patient-specific arthritis Internet information as an extension of a rheumatology practice. Our Web site provided novel access to personalized, evidence-based, and up-to- date information for patients.

Key Words

Arthritis; Osteoarthritis; Rheumatoid arthritis; Internet; Web site; Education; Patient education; Pharmacist; Pharmacy; Drug information; Medication information

INTRODUCTION

Arthritis is the leading cause of disability in the United States; over 21 million Americans are diagnosed with osteoarthritis (OA), and 2 million Americans are diagnosed with rheumatoid arthritis (RA) (1). As the American population ages, it is predicted that by the year 2020 the number of patients afflicted with arthritis will increase to 60 million (1). Although OA is the most common type of arthritis and often leads to significant disability and decreased quality of life, both OA and RA are chronic arthridites with variable course and progression of disease (2,3).

Over the past decade, important advances in the treatment of both RA and OA have become available. These advances include the introduction of biologies to the market for the treatment of RA and an inversion of the traditional RA treatment pyramid by which patients are starting disease-modifying antirheumatic drug therapy or biologic agents earlier, with combination therapy becoming more commonplace. Although there are no agents available to mitigate the progression of OA, the management of pain and associated functional disability has been expanded by the introduction of the cyclooxygenase-2-selective inhibitors. Because of these advances in therapy, more complicated medication regimens, and variability of disease course, patient education is a common venue to promote and complement safe and effective overall arthritis management (2-4). Patient education is an essential component of all chronic disease management. Studies have shown that there is a parallel between a patient's knowledge of personal health care and compliance (5).

Traditional patient education venues include educational pamphlets and verbal instruction. Inherent difficulties with these methods include educational materials targeted at an inappropriate literacy level (6), inadequate communication skills of the health care professional (7), and time constraints. Because of improved technologies and an increase in patients' access to new technologies, potential for patient education exists via the World Wide Web. It is estimated that there are currently between 117 and 167 million American households with Internet access (8). Over 113 million Americans are estimated to search the Internet; 52 million of these individuals reported searching for medical information online (9,10). With increasing interest and access, it is expected that use of the Internet to obtain medical information will continue to grow; by 2005, studies showed that 88.5 million adults will access health care information online (11). The most common types of medical information that patients search for include disease information, weight control/diet information, and facts about prescription drugs (12).

The Drug Information Center (DIG) Arthritis Project is an Internet-based patient education program hypothesized to broaden the health system's range of providing quality care to arthritis patients through a technologically advanced venue. An initial survey was conducted in a sevenphysician universityVcommunity-based rheumatology practice to assess patients' interest in our interactive arthritis Internet program (13). We asked 1,800 patients with OA, RA, or both (identified by international Classification of Diseases, Ninth Revision [/CD-9] codes) if they were interested in our program. Of these, 503 patients (28%) responded. Of these respondents, 52% replied that they were interested in participating in such a program. Multivariate analysis revealed that patients who were younger (less than 56 years old) and/or who had access to the Internet were significantly more likely to access this program (13).

Based on our initial survey interest, commonality of OA and RA, positive impact of patient education, and increasing use and convenience of the Internet, the objective of this project was to create, implement, and assess the value of a patient-focused pharmacist forum (the DIG Arthritis Project) via the Internet, with arthritis patients providing increased access to timely, reliable, and personalized drug and disease information.

PART 1: DEVELOPING THE DIC ARTHRITIS WEB SITE

METHODS

A multidisciplinary team including, pharmacists, physicians, an epidemiologist, a medical librarian, an attorney, psychometric professionals, computer analysts/Web site design experts, and patients initiated the development phase. Members of this group, with the exception of the patients, contributed to the site content design. Patients were utilized for a beta test phase and to provide input and suggestions for simplification of directions and Web site navigation. The specific aim of this portion of the project was to develop a system and process by which patients with OA and RA can access an interactive "ask-a-pharmacist" arthritis patient information Web site. Content design for this Web site consisted of three components: ask-a-pharmacist interactive forum; health assessment interactive programming; and OA and RA drug and disease information.

The goal of the ask-a-pharmacist content was to provide a personalized, interactive, secured question-and-answer forum. This section would be unique compared to existing Web sites reviewed because of the personalization of patient background information and extension of a physician service. Patients would provide demographic information and medication history prior to asking a question. Patients would also provide their physician's name for contact/ consult by the pharmacist if necessary. Initial limitations recognized were patient confidentiality, security, and compliance with the Health Insurance Portability and Accountability Act (HIPPA) regulations. Therefore, input of the computer/Web site experts was sought to provide a high level of security while maintaining the benefits of obtaining patient personal information. Legal review occurred to ensure compliance of the systems.

Our team also recommended providing patients with unique self- assessment tools and aids. This not only would help to recruit patients by providing a novel service, but also would supply patients with valuable information on which they could learn about their disease, specifically disease impact. Therefore, Quality Metric, Inc., was consulted to provide interactive, online health assessment tools. Quality Metric, Inc., has developed and validated such tools in previous studies. Advantages of this system would be the reliability of validated tools, instant scoring, and printable patient assessments. Issues discovered with this area again would be the ability to achieve and maintain patient confidentiality when leaving our secured site to an external site as well as seamlessness and ease of navigability for the patients to toggle from our site to Quality Metric Web site without interruption.

Finally, the third content area would provide drug- and disease- specific information regarding OA and RA. As Internet information has been found to be inconsistent in quality and content (14-19), it was decided to utilize national guidelines from the American College of Rheumatology in developing our content. It was also suggested to have content that contained pertinent articles and current arthritis information/news. Further, it was recommended that the pharmacists' qualifications be available to increase patient confidence in the systems and programs. Last, because it has been identified that there are limitations and inconsistent types of medical and drug information on the Web (14-19), a systematic process for determining recommended Web site links was incorporated (20).

It was imperative not only to develop a secured site, but also ease of navigability was essential to the success o\f the site. Therefore, movement within the site and logistics of the site were designed and reviewed primarily by pharmacists, physicians, and computer/Web site analysts. Patients were involved on completion of the initial site proposal to test ease of use. Further issues of Web site links and utilization of the health assessment tools were also addressed. The Web site was available to any patient from a sevenphysician university-/community-based rheumatology practice with secured log in and password and Internet access at any time of the day. Responses to the questions needed to be reliable and timely. Also, access to the site was free for a minimum of the initial pilot assessment phase.

RESULTS

The development phase took approximately 6 months to complete. Web site analysts constructed the interactive pharmacist questionand- answer session; interactive quality assessment tools were provided by Quality Metric; educational materials were written and developed by pharmacists and physicians. The university legal department reviewed the overall program to ensure HIPPA compliance.

Ask-a-Pharmacist. The interactive ask-a-pharmacist format was based on the goal of creating a personalized, interactive, secure, questionand-answer forum that contained several system/program requirements. The patient population provided access to the Web site included OA and RA patients registered in our collaborating arthritis clinic. The Web site system utilized an Oracle database, Web browser, the Internet, and RSA ACE Server applications.

Once the patient was logged on to the application with user name and password, the following information was displayed:

Welcome to the Drug Information Center (DIC) Arthritis Project!

Program Goal: This program is intended to provide increased access to timely, reliable, and personalized drug information for University of Pittsburgh Medical Center (UPMC) patients with arthritis.

Description: The University of Pittsburgh DIC has developed a secure Internet message board to allow patients to ask confidential medical/medication questions of a licensed pharmacist via the World Wide Web (at no cost to you). This program may be accessed at http:/ /www .arthritis.askapharmadst.pitt.edu/

Instructions: If you are interested in enrolling and/or have questions regarding the program or forgot your user name/password, please contact the Drug Information Center at 412-624-3416.

The initial page also displayed the options Ask Question, View Message Digest, or Modify Profile, by which the patient would select which application he or she would like to view. Links were also available for interactive health assessment tools and informational pages. If a patient selected Ask Question, they could have submitted a question to the pharmacist. On doing so, the following disclaimers were displayed:

The information provided is not intended to diagnose, prescribe, or supersede your routine medical care. The information provided by the pharmacist is intended to increase your knowledge and understanding of your drug therapy. You must allow a response time of 48 hours or 2 business days. Acute and/or emergency medical/ medication questions should NOT be submitted. Please call your physician or health care provider with urgent questions.

FIGURE 1

Workflow of the proposed system.

FIGURE 1

Workflow of the proposed system.

The DIC Arthritis Project cannot be responsible for and/or anticipate Internet downtimes or server application difficulties. If you experience difficulty with the application, please contact 412624-3784.

On login to the site, the patient was asked to complete a patient profile to allow the pharmacist to personalize the question responses. The patient also had the ability to modify select information in his or her profile at any time. Once a patient profile was complete, the patient submitted questions to the pharmacist. After submitting a question, the patient could have gone into the system at any time to view the message digest or to retrieve answers to the questions. All questions/answers were available for viewing whenever the patient was logged on to the site.

Once a question was submitted by the patient, the pharmacist performed a systematic drug information search of the medical literature and provided a response within 48 hours (or 2 business days). Prior to the patient receiving the response, an independent pharmacist and physician reviewed the response for quality assurance purposes.

Once the pharmacist responded to the question, the patient was notified via e-mail that the question had been answered, and the patient may go to the site to receive the response. On initial display of the answer, a satisfaction survey appeared on the same screen. Survey items included questions regarding ease of use, overall satisfaction with content and timeliness, and desire to use the service again or recommend the service to a friend. These questions were rated by a Likert scale. Once the patient submitted the survey, it did not reappear.

A pharmacist administrator was able to view deidentified survey responses as well as enter quality assurance review and run reports on types of questions asked and quality assurance responses. Pharmacy interns were available to provide patient support in initial navigation through the program, reset passwords, and so on. Figure 1 describes the workflow of the ask-apharmacist interactive program. Figure 2 summarizes the operational components of the aska- pharmacist program for all users.

Self-Assessment Tools. Quality Metric provided a computerized SF- 8 scale with a summary score and printable recommendations and tips for patients. The SF-8 assessed patients' physical and mental health and highly correlates (r>0.9) with the SF-36. OA and RA Disease Impact Scales were also included and assess the level of impact that one's disease has on physical functioning, social and role participation, ability to engage in recreational and leisure activities, psychological distress and well-being, and energy/ fatigue. All assessments were scored by Quality Metric using norm- based methods. Patients were provided seamless access to the Quality Metric site to participate in such interactive testing. Deidentified information was provided from Quality Metric for scoring and evaluation purposes.

Patient Information. The area of patient information contained summaries of the American College of Rheumatology OA and RA guidelines, arthritis medication reviews, news and current arthritis information, and commonly asked questions. All information was developed by the pharmacists and physicians. In addition, other existing arthritis Web sites were systematically evaluated (14,20) by this group to provide recommendations for patients regarding reliable arthritis Web site links. Last, the pharmacists' credentials, biographies, and pictures were provided.

FIGURE 2

Operational scenarios: a summary of the use cases available for each user group.

PART 2: PILOT STUDY/ DATA ANALYSIS

METHODS

The second phase of the project was to implement the DIC Arthritis Program and assess its impact. A seven-physician, university-affiliated community rheumatology practice participated in this project. Specific aims of this portion of the project were to determine the nature and scope of questions asked by patients; measure the quality of life and disease impact of our Web site users; and determine the overall satisfaction with this Web site.

Patients with the diagnosis of OA, RA, or both were identified from a computer-generated log of ICD-9 codes for the respective diagnoses; 1,800 possible patients were identified. Patients were recruited by sending a letter and follow-up postcard by mail. The initial letter described the site and provided the patient with a unique log in and password. Instructions on how to use the site and the Web site address were also provided. A follow-up postcard reminding the patient of access to this program, providing the Web site address, and providing contact information for the DIC if the patient needed help entering the site and/or forgot or lost their log in and password was sent approximately 2 weeks after the initial mailing. Brochures describing the site and providing the DIC contact information were available in the physicians' office. Physicians personally invited patients to participate in this program and recommended the site to patients as a reliable source of information.

Assessment of the program was based (as well as the above mailings and recruitment methods) on a prospective 6-week pilot study that was reviewed and approved by the local institutional review board. All patients identified by ICD-9 codes for OA, RA, or both (as above) invited to participate in this program and logged on to the DIC Arthritis Project Web site were included into the evaluation. Patient satisfaction surveys were provided to patients on receipt of their question response. Completed surveys were used to assess overall patient impression of the ask-a-pharmacist portion of the program. These surveys were incorporated as electronic systems that automatically deidentify data and collate reports. The objectives of this pilot study were to evaluate the use and perceived usefulness of the program. Outcomes evaluated included the number of patients who entered the site, number of patients who asked questions, and amount of time patients spent logged on to the site. In addition, the types of questions asked were categorized. Health assessment scores were also evaluated. Computerized and deidentified recordings of patient movement within the site, patient health assessment evaluations, and patient satisfaction scores were analyzed using descriptive statistics.

RESULTS

Pilot Study. During a 6-week period, 56 patients (25 with OA and 31 with RA) accessed the Web site (with 14 individuals visiting more than once), for a total of 128 visits. The average amount of time spent per visit to t\he Web site was 16 27 minutes. There were 23 patients (a third of whom had RA) who asked a total of 29 questions (17 questions from patients with OA and 12 from patients with RA) of the pharmacist.

Ask-a-Pharmacist. The most common types of questions that the patient posed to the pharmacist concerned drug-drug interaction (31%), adverse drug reactions (27%), and therapeutic use (26%). Figure 3 displays the category and type of question received by percentage.

Patient satisfaction scores were based on voluntary response to the survey posed upon receipt of question response (n = 6). Results showed that 83% of patients rated the Web site as useful to very useful, and 83% would both use the Web site again and recommend the Web site to a friend.

Interactive Self-Assessment Tools. During the 6-week pilot phase, 24 patients completed the health assessment surveys (10 RA, 9 OA, and 5 both). Results from these patients' health assessments revealed the following information: SF-8 scores demonstrated that our patient population scored below the 1998 general US population on all SF-8 scales and summary measures. The differences in mean scores were most evident in SF-8 scales and summary measures of physical health status. On average, our patients scored slightly above the SF-8 norms for OA or RA on all scales and summary measures.

FIGURE 3

Classification of questions pharmacists were asked.

Black, RA;

white, OA.

When evaluating the SF-8 physical component score, 70% of participating patients had physical health status below, 18% had physical health status above, and 12% had the same physical health status as the general US population norm. The mental component score revealed that 29% of participating patients had mental health status below that of the general US population norm, 32% had mental health status above the general US population norm, and 39% had similar mental health status as the general US population norm. A comparison of physical component score to US-based OA and RA population norms demonstrated that 26% of participating patients had physical health status below the specific norm, 24% were above the norm, and 50% were similar to the norm. Mental component score reported that 24% of participating patients had mental summary scores below that of the OA and RA population norms, 38% were above the disease specific norms, and 38% were similar to the norms.

The SF-8 has the ability to screen for depression by patient responses. Nearly 18% of the participating patients screened positive for depression, which is roughly the same percentage observed in the general US population. Content-based interpretation of the SF-8 physical summary scores reported that over 17% of participating patients were limited in walking one block; 28% were limited in climbing one flight of stairs, 47% were experiencing difficulty performing at work because of their physical health, and because of their physical health problems 25% had to reduce the time spent at work. Assessment of mental summary measure scores demonstrated that because of emotional problems 12% of patients had to reduce the time spent at work, 31% accomplished less at work, and 21% worked less carefully; 14% reported limitations in social activities because of physical or mental health problems.

Disease impact scores compared to diseasespecific norms reported that the impact of arthritis for our participating patients was slightly higher than that observed for the normative sample of OA and RA patients. In addition, 43% of patients had greater disease impact than the average person with arthritis, and 23% had less disease impact than the average person with arthritis. Content- based interpretations for the mean disease impact score observed showed that 8% were having difficulty performing daily activities because of their arthritis, 13% were kept from getting work done because of their arthritis, 9% were left tired or fatigued to participate in daily activities because of their arthritis, and 19% were fed up or frustrated with their arthritis.

DISCUSSION

Results of this project showed that patients visiting our novel, interactive arthritis Web site most commonly asked drug interaction, adverse drug reaction, or therapeutic use questions. Although only a small number of patients utilized the Web site, the majority found the site to be useful/very useful and would use the site again or recommend to a friend. Health assessment measures revealed that patients using the Web site had slightly higher SF-8 scores and disease impact scores compared to US arthritis population-based norms.

Patient education is important to achieve target goals for chronic diseases. Further, patient education is an essential component in promoting patient acceptance and behavioral modifications necessary for patient-managed disease therapy (6). For example, an arthritis self-help course educational program, offered to patients with chronic arthritis on conventional arthritis medication therapy, demonstrated not only reduction in arthritis pain, but also cost savings to the health care system (1). This program did not evaluate the impact of the information provided on the patients' health status. However, this is a potential future implication for further programming efforts.

In a recently published study, 27% of patients surveyed in a rheumatology clinic used the Internet for health care information within the past year (21). Of these patients, the majority reported that the information was beneficial, and approximately one third felt that it was simpler than contacting a doctor or nurse. Although 28% of patients expressed interest in our interactive Internet arthritis Web site by returning a completed survey, only 11% of those patients actually accessed the Web site. However, the majority of patients who accessed the Web site reported that they were satisfied with the pharmacist's response and would use the site again or recommend it to a friend. Our initial survey demonstrated that younger patients or patients who had access to the Internet were more likely to utilize our program (13). Results of our health assessment tools reported that patients who accessed our site had slightly higher physical and mental component scores compared to the USbased norms for patients with OA and RA. These finding will help in identifying target populations for future programming and educational opportunity.

With the widespread use of the Internet to locate medical and drug information, it is paramount to identify the drug information needs of the community. The inappropriate use of medications leads to drug-related morbidity and mortality, which has become a significant issue in health care. Educating patients about medications via a reputable and established Internet site represents one method of assessing and meeting the drug information needs of the community.

Although preliminary success was seen with our pilot program, costs and marketing strategies need to be evaluated further to fully determine sustainable efforts. The total costs of developing and supporting this pilot project were approximately $50,000 (supported in part by a grant from the Drug Information Association). Costs of ongoing maintenance and support would need to be considered as well as a marketing plan for continued application and expansion of the program to a broader audience. Other studies reported that arthritis information Web sites are targeted primarily to health care professionals or often contain advertisements for drugs (22,23).

Although information is readily available to patients, it is often difficult to assess the reliability of the information (6). The quality of Internet medical information is extremely variable (14-19). At least 98 unique Internet medical rating instruments have been described in the literature. The major limitations of these tools include incomplete development and limited or poor validation (14). Standards for medical Web sites have been proposed, including currentness of information, accessibility of relevant content, literacy level, accuracy, completeness, and consistency (14,18,24,25). Further, most information is available as "static" text, and only a few Web sites provide patient-specific interactive tools (21).

CONCLUSION

Despite the widespread acceptance of the importance of patient education in managing chronic disease states, the increasingly complex nature of many medication regimens, and the vast number of patients with Internet access, there are no programs to date, to our knowledge, that utilize the Internet as a venue to improve patients' knowledge of arthritis medications through direct pharmacist interaction as an extension of clinical patient care services within a health system. In addition, we are aware of no Web sites that provide confidential, patient-specific arthritis Internet information as an extension of a rheumatology practice. Our Web site provided novel access to personalized, evidence-based, and up-to- date information for patients. Surprisingly, only a small percentage of patients utilized this Web site initially, but the users suggested that it was useful/very helpful. Future implications include designing ways to provide on-site Internet navigation training and education and to expand this program to all patients with arthritis across the large academic health care system.

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Nicole T. Ansani, PharmD

University of Pittsburgh, School of Pharmacy Pfizer, Inc.

Bethany A. Fedutes-Henderson, PharmD

Robert J. Weber, MS, RPh

Randall Smith, PhD

Jennine Dean, RPh

University of Pittsburgh, School of Pharmacy, Pittsburgh, Pennsylvania

Molly Vogt, PhD

Kenneth Gold, MD

C. Kent Kwoh, MD

Thaddeus Osial, MD

Terence W. Starz, MD

University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania

Correspondence Address

Nicole T. Ansani, PharmD, 114 Alpine Circle, Pittsburgh, PA 15215 (e-mail: nicole.ansani @yfizer.com).

At the time of writing, Dr. Ansani was Associate Director, Drug Information, University of Pittsburgh Medical Center, and Assistant Professor, Department of Pharmacy and Therapeutics, University of Pittsburgh School of Pharmacy. She currently is Clinical Education Consultant, Pfizer, Inc. The authors would like to acknowledge the administrative support of Shan Squeglia. This project was funded by a grant from the Drug Information Association.

Copyright Drug Information Association 2006

Source: Drug Information Journal

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