Cancer Pain Education for Patients and the Public

Transcription

1 Vol. 23 No. 4 April 2002 Journal of Pain and Symptom Management 329 Special Article Cancer Pain Education for Patients and the Public Betty R. Ferrell, PhD, FAAN and Gloria Juarez, RN, MSN City of Hope National Medical Center, Duarte, California, USA Abstract Pain education for patients and the public is an essential element of improved pain management. This article reports on the implementation of a national training project, Cancer Pain Education for Patients and the Public (CPEPP). The CPEPP curriculum was designed to address the multiple opportunities for pain education and to provide resources and support for successful implementation. J Pain Symptom Manage 2002;23: U.S. Cancer Pain Relief Committee, Key Words Cancer, pain, education, patients, public Address reprint requests to: Betty R. Ferrell, PhD, FAAN, City of Hope National Medical Center, 1500 Duarte Road, Duarte, CA , USA. Accepted for publication: July 22, Introduction Key pain literature and national guidelines have consistently cited patient education as a critical component in improving pain relief. 1 5 Patient education is the cornerstone of effective pain management. 6 9 The subjective nature of pain and the need for patient involvement in the pain management regimen require active participation by the patient that must be based on accurate pain information and a realistic plan for pain relief. The literature and experience of clinicians over the past decade have contributed much to our understanding of patient education for pain management. One of the most important findings has been the need to focus on both knowledge and attitudes for effective pain education to occur. Patients require information to enhance their understanding of available opioids, routes of administration, management of side effects, and use of non-drug interventions. 4 Equally important are the attitudes regarding pain. Providing only content or facts is futile unless clinicians also address strongly held beliefs and attitudes. For example, patients misconceptions regarding opioid addiction, tolerance, expression of pain, and cultural beliefs greatly affect adherence to the pain management regimen. These same misconceptions are common in family members 13,14 and the general public. 15,16 Patient and family education is provided not only in structured educational sessions, but informally as well. Clinicians are constantly presented with opportunities to instruct patients and families, clarifying or expanding on existing knowledge, or providing new knowledge. Education has become extremely important due to changes in a health care delivery system that promotes decreased length of stay, discharge of patients who require ongoing care following hospitalization, increased use of ambulatory/outpatient services, and improved technologies in health care including pain management. 17 Teaching patients how to use a daily pain log or diary is a useful tool for documenting the patient s pain intensity and the effectiveness of the pain management regimen. Patient logs and many other resources are available to assist health care providers in their efforts to improve U.S. Cancer Pain Relief Committee, /02/$ see front matter Published by Elsevier, New York, New York PII S (02)

2 330 Ferrell and Juarez Vol. 23 No. 4 April 2002 Table 1 Cancer Patient Education for Patients and the Public (CPEPP) Course Objectives 1. Define the content of pain education that can be achieved through methods of individual instruction, group education, public education, and telephone instruction. 2. Define skills needed for effective teaching methods. 3. Identify barriers to adequate cancer pain management. 4. Describe cultural considerations in patient education regarding pain. 5. Recognize methods of using the media to educate the public about cancer pain. 6. Explore technologies for use in pain education such as computer instruction, video, internet, and other media. 7. List content and methods of professional staff education as a prerequisite to improved patient education. 8. Describe strategies for overcoming institutional barriers to pain management education. pain management. With dramatic changes in health care delivery, patient education is no longer confined to individual patient instruction occurring during long hospital stays. Rather, patient education occurs in brief segments and across multiple settings, including ambulatory/ outpatient care, physician offices, and in home care. A great deal of patient teaching is accomplished by telephone. 18,19 Implementing pain education within the current health care system requires innovative and creative teaching methods. There is also a significant need for education appropriate for low literacy and non-english speaking populations Studies involving patient education for cancer pain have provided models for determining the appropriate content and methods of teaching It is important to disseminate these model programs for application to other settings. Course Description This article reports on results of the first of three courses titled Cancer Pain Education for Patients and the Public (CPEPP) held at the City of Hope National Medical Center. These courses are supported by a training grant provided by the National Cancer Institute (NCI). Acceptance to the course was based on competitive selection of professionals involved with patient and public education. Table 1 presents the specific objectives for the CPEPP course. The overall purpose of the course was to improve patient and public education in cancer pain man- Table 2 Course Agenda Day 1 7:30 8:00 Registration, Continental Breakfast, and Poster Exhibits 8:00 8:45 Welcome and Review of Pre-Course Betty Ferrell, PhD, FAAN Evaluation/Goals and Overview of Education/Framework 8:45 9:45 Panel: What Do Patients and the Public Need to Know? Panel Moderator Marcia Grant, DNSc, FAAN Patient Perspective Michael Sullivan Patient Perspective Edith O Neal-Page Family Caregiver Lynne Rivera 9:45 10:15 Break and Poster Exhibits a 10:15 11:30 Module I Defining the Content for Pain Education Margo McCaffery, RN, MS, FAAN 11:30 12:15 Module II Pain Management Education for Individual Patient Education Denise Economou, RN, MS, AOCN 12:15 1:30 Lunch Participants Seated According to Similar Work Settings for Networking 1:30 2:15 Module III Cultural Considerations in Patient and Public Education for Cancer Gloria Juarez, RN, MSN Pain Education 2:15 3:00 Module IV Pain Education Provided Through Group Settings Betty Ferrell, PhD, FAAN 3:00 3:45 Break and Poster Exhibits a and Optional Tour, City of Hope (continued)

3 Vol. 23 No. 4 April 2002 Cancer Pain Education for Patients and the Public 331 3:45 4:45 Module V The Media as a Public Education Tool Table 2 Course Agenda (Continued) 5:00 7:00 Dinner The Imperative of Improved Pain Education Day 2 8:00 9:00 Success Stories: Models of Patient and Public Education Panel Moderator Panel Elinor Gilbert, BA Kevin Koga, MA June Dahl, PhD Marcia Grant, DNSc, FAAN Jeannine Brant, RN, MS, AOCN Anna R. DuPen, ARPN, MN Cynthia R. King, PhD, NP, RN 9:00 9:45 Module VI Public Education for Pain Management Jim A. Guest, JD Content for Education 9:45 10:15 Break and Poster Exhibits a 10:15 11:00 Module VII Telephone Education via Formal Systems: Kathie-Jo Ritchie, RN, MSN, AOCN Concepts in Telenursing and Pain Education 11:00 11:45 Module VIII Telephone Education-Informal Systems Pam Kedziera, RN, MSN, AOCN 11:45 12:30 Lunch Participants Seated According to Geographic Areas for Networking 12:30 1:30 Module IX Technology in Cancer Pain Education- Tim Ahles, PhD Computer Instruction, Interactive Video, Internet, and Other Technologies 1:30 2:30 Module X Professional Education as a Prerequisite Jo Ann Dalton, RN, EdD, FAAN to Patient Education: Involving Colleagues in Pain Education 2:30 3:00 Break and Poster Exhibits a 3:00 3:45 Module XI Overcoming Institutional Barriers to Pain Management Education Deb Gordon, RN, MS 3:45 4:30 Plans for Follow Up Evaluation and Goal Setting Betty Ferrell, PhD, FAAN 4:30 5:00 Graduation and Reception a All poster exhibit times included demonstration of resources available on the Internet and other computer technologies as well as display of materials currently in use by the participants. agement. Individual objectives addressed various forms of pain education, identifying barriers to pain management and describing cultural considerations in patient education for pain. Table 2 presents the course agenda. The course was conducted over two very intensive days. The first day began with a panel presentation including two patients who had experienced pain and a family caregiver. One of the patients was a long-term cancer survivor who focused his comments on chronic pain management and the second patient was a relatively new breast cancer survivor who discussed immediate post-operative and treatment-induced pain. The family caregiver echoed the importance of involving family caregivers in education and the role of families as advocates for the patients. This opening panel proved to be a very successful strategy for introducing the realistic considerations for clinicians in pain management. The remainder of the course was organized according to the eleven modules of the CPEPP program. The presentations for the course had a dual function of presenting first the content of that module, then focusing on actual skills for teaching. The first module began by defining the content of pain education to emphasize what information should be taught to patients about pain. The second module identified strategies for teaching individual patients through one-on-one teaching. Module 3 focused on cultural considerations in patient and public education for cancer pain education. Included in this discussion was the focus on low-literacy, ethnicity, and language. There was strong consensus of faculty and participants that most

4 332 Ferrell and Juarez Vol. 23 No. 4 April 2002 Table 3 Examples of Participant Pre- and Post-Course Goals Pre-Course: Develop and implement a cancer pain education program for patients and caregivers. Immediate Post-Course: Have changed this goal to patient/family education booklet to be given to each patients on admission or as indicated. 6 Month Post-Course: Booklet now routine for all patients on oncology unit. Pre-Course: To investigate the development of a multicultural pain assessment chart to be used in our inpatient and outpatient settings. Immediate Post-Course: Develop a multicultural 0-10 pain scale. 6 Month Post-Course: The scale is available in English, French, Spanish, Croatian-Bosnian-Serbian, Arabic, Turkish, and Vietnamese. Pre-Course: Coordinate and facilitate cancer pain management in our Health Care System. Immediate Post-Course: In conjunction with hospital wide pain management program disseminate and inservice public on pain management. 6 Month Post-Course: Have provided written materials in our waiting room for public to take home. Pre-Course: Expand a pain management education program for patients and their families within three-hospital network in our state. Immediate Post-Course: Organize and launch a pain education and symptom management symposium for patients and their families in collaboration with the CNS from the other hospital in the community 6 Month Post-Course: First symposium implemented. An additional symposium planned for fall. pain education has been focused on Englishspeaking, well-educated consumers and that enhancing pain education in these other groups is of great importance. The afternoon of day 1 included strategies for pain education provided through group settings (Module 4). This session was intended to encourage participants to incorporate pain education in current patient support groups, survivorship groups, and any other form of teaching multiple patients together as opposed to individual instruction. Module 5 focused on the media as a public education tool, shifting attention to not only patients currently experiencing pain but to the public at large in order to increase consumer expectations for pain relief. The dinner speaker, Dr. June Dahl, presented the topic of The Imperative of Improved Pain Education. Much of this education included the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) standards for pain management. This session proved very informative for the participants Table 4 Demographic Data of Course Participants Profession n % Nurses % Physicians 3 2% Pharmacists 2 1% Social Workers 4 3% Other (1 Psychologist & 2 2% 1 Health Promotion Coordinator) Work Setting Inpatient 77 52% Outpatient 37 25% Both Inpatient and 15 10% Outpatient Home Care 3 2% Hospice 4 3% Other 11 7% Patient Population Caucasian 72% African American 14% Hispanic 7% Asian 3% American Indian 1% Other 3% and strategic as many of them felt that the JCAHO focus on patients rights would provide key support for achieving their goals. Day 2 of the course began with a strategy we have used in previous training programs called Success Stories. This session included three professional participants who had successfully implemented patient or public pain education in their own settings. The intent of this session in all training courses has been to give the participants role models of individuals like themselves who have succeeded in educational ef- Table 5 Available Materials for Patient Education a Item n % Written materials % Audiovisuals 83 56% Pain education by nurse specialist 49 33% Patient support groups 40 27% Internet 31 21% Health fairs, public education 28 19% Telephone information 21 14% In-house television 16 11% Computer assisted 15 10% Other Pain Management Resources Identified Flow sheets, assessment tools % Protocols, policies % Equianalgesic charts 96 65% Quality assessment tools 79 53% Standards of care 68 46% Standing orders 55 37% Standard care plans 46 31% a In facilities prior to attending the course.

5 Vol. 23 No. 4 April 2002 Cancer Pain Education for Patients and the Public 333 forts. The sixth module shifted the focus from patient education to public education. The major message was the importance of educating the public to expect better pain relief. Modules 7 and 8 focused on telephone education. The first of these two modules presented information on telephone education using formal systems such as cancer centers that have telephone information services, and the second module focused on informal systems such as individual conversations with patients calling with pain problems or other opportunities to educate patients about pain during phone follow-up. Module 9 introduced novel technologies to be used in cancer pain education, such as computer-assisted instruction, and web-based and other technologies. The final two modules were included to complement the direct content about patient and public education. Module 10 presented information on educating professionals as an important prerequisite to patient education. This was a very popular, well-received module as most of the participants recognized that education of their colleagues would be essential to educating patients. The final module covered institutional barriers to pain management. This topic emphasized the importance of creating structures and processes to support patient education. Participants were given extensive materials, including a 250-page syllabus with a disk containing all the faculty presentations and slides. In addition they were given a selection of videos; a CD-ROM education program; a Pain Manual; 28 books, brochures, and other written materials; and multi-language pain assessment scales. Course Pre-Evaluation Table 3 presents some examples of pre- and post-course goals. Participants first submitted these goals as a part of their application process. This has proven to be a very effective strategy in our previous educational efforts to facilitate participants beginning to think of how they will put their knowledge into practice. The goals are then revised at the conclusion of the course on the second day, once the participants have gained information from the faculty and the opportunity to compare goals with other participants. The participants complete these immediate post-course goals on a duplicate copy form, allowing them to leave one copy with the investigators and take a copy with them. The investigators use this form for follow-up 6 months later. The goals generally become more realistic and specific from pre- to immediate post-course. The table includes examples illustrating how goals are often revised from pre- to immediate post-course and be- Table 6 Barriers to Pain Management Pre-Course Mean 6 Month Post-Course Mean P value a Systems Barriers Other responsibilities Reimbursement policies Low priority is given to pain Treatment options unavailable Barriers Related to Health Care Professionals Professionals inadequate assessment Professionals concerned about side effects Professionals fear addiction Professionals concern about tolerance Professionals concern about regulation Barriers Related to Patients Belief that medicines should be saved Patient fear of addiction Belief that pain cannot be avoided Belief that the nurses and doctors are busy Patient reluctance to report Reluctance to take medications/side effects Scale: 0 not a barrier; 10 severe barrier. a Based on two-sided t test comparing pre-course to 6 month evaluation, P 0.05.

6 334 Ferrell and Juarez Vol. 23 No. 4 April 2002 come even more specific when actually implemented in the participant s own setting. Table 4 presents demographic data regarding the participants. A total of 147 individuals representing 40 states participated, in addition to 13 faculty who also completed the training. The course was open to all professionals involved with patient and public education; the majority of participants were nurses. Participants represented very diverse work settings, with 52% working in inpatient settings, 25% in outpatient settings, and an additional 10% working across both inpatient and outpatient settings. The course has a major objective to promote patient education for ethnically diverse groups, and participants were surveyed as to their patient population. Twenty-eight percent (28%) of patients served by the participants were ethnic minorities. Table 5 provides a summary of the materials that were available in the participants settings related to patient and public education prior to their attending the course. Most settings had written materials (87%) and many had audio-visual materials (56%). However, many settings did not have other means of pain education, such as support groups, internet resources, public education forums, or telephone education. Most settings were using flow charts or assessment tools, as well as protocols and policies or procedures related to pain. Use of standards of care, standing orders, or standard care plans was less frequent. Post-Course Evaluation The participants were surveyed as to what they currently saw as the key barriers to improve pain management in their setting prior to attending the course and 6 months later (Table 6). In the area of system barriers, the most predominant concern pre-course was health care professionals have other responsibilities that take priority, with a mean of 4.73 on a scale of 0 (not a problem) to 10 (severe problem). When asked about barriers related to health care professionals, concern about inadequate pain assessment was most predominant (mean 5.80) and similar concern was expressed regarding medication side effects (mean 4.81). The course emphasized that improving patient education is contingent upon adequate education of professionals in clinical settings. The third area of barriers assessed was related to patients. The most common barrier reported was the patient belief that medicines should be saved until pain is severe (mean 6.03). Table 6 also presents the data from the 6-month evaluation which demonstrated decreased barriers across all areas and those of significant change indicated (P 0.05). In the area of systems barriers, significant difference was reported in the area of low priority given to pain. Under the category of professional barriers, significant change was reported in three of five areas, including pain assessment, concern about side effects and concern about regulation. Interestingly, all six areas of patient barriers were reported to have decreased post-course. The participants evaluated the overall course content on a scale of 0 (poor) to 5 (highest quality). The overall course rating was Table 7 Examples of Key Activities of Participants as Reported 3 Months Post-Course Addition of pain content to hospital web page for staff and for patients. Pain assessment policies written or revised. Pain management policies written or revised. Development of pamphlets, fact sheets or other brief materials for patients. Extensive professional education efforts (MDs, nurses, house staff, chaplains, community agencies). Education for clinic or media office staff regarding telephone education. Collaboration with Marketing or Media department to promote hospital pain service. Incorporation of pain content into other patient information materials (e.g., admission packet). Development of videos for patient education. Development of mission statements or philosophy statements regarding pain management. Instituted pain education into all preoperative instruction. Presentations at cancer survivors support groups. Conversion of pain education to other languages common to the setting. Adding resources or books to professional or patient libraries. Serve as a resource to hospitals efforts for meeting JCAHO standards. Display of pain posters on units. Adding a pain column to the hospital/ agency newsletter. Pain evaluation added to patient satisfaction survey. Joined pain organizations, [e.g., American Pain Society (APS), Oncology Nursing Society (ONS) Pain Special Interest Group, American Society of Pain Management Nurses (ASPMN)]. Developed pain competency for use in evaluating all nursing staff. Participation in local television talk shows. Instituted Ask a Nurse booth in hospital lobby; information about pain added to patient information booths or kiosks. Pain information/pain scales added to all rooms.

7 Vol. 23 No. 4 April 2002 Cancer Pain Education for Patients and the Public 335 Based on the evaluations, the course agenda was revised for the subsequent courses. Modules were merged in three areas as there was some overlap. The two related to telephone education (Modules 7 and 8), the first two introductory modules (Modules 1 and 2), and the two modules related to public education and media (Modules 5 and 6) were merged. This has allowed us to expand the time for other modules and provide more time for interaction. For example, the cultural module was expanded to include more focus on spiritual considerations and more time devoted to pain education for those with low literacy. The revised time allocation also provided opportunity for demonstration of teaching skills across the modules through role-play and demonstration. The investigators have continued their communication with the course attendees to monitor and support their progress in implementing pain education programs. Table 7 presents examples of some of the key activities of the participants as reported 3 months following the course. Summary The CPEPP course has been well received and a total of 244 individuals will be trained across the three courses. The final course was held in October Many of the CPEPP course materials are available on the City of Hope website ( Additional patient pain education materials are available on other websites as identified in Table 8. The investigators believe that the training grant mechanism (the R25) provided through the National Cancer Institute has provided an excellent resource to facilitate education within clinical settings. The strategies used during the course, including lectures, role play, demonstration, and extensive participant interaction, have been well received. Providing participants with extensive materials, including the comprehensive syllabus, numerous pain assessment scales, sample materials, and other resources has been very helpful as the motivated course participants return to their work settings and face the many realistic challenges to incorporating ideas into practice. The investigators and participants have been very impressed by the number of pain education resources available and the need to share resources rather than reinvent the wheel. Sharing of available materials also will help direct resources toward the truly unmet needs such as educational materials for low literacy and in multiple languages. Education of patients and the public will continue to be vital forces to improve the management of pain. The investigators believe that this project and its participants will be a contribution to that effort. Acknowledgments This project was funded by a training grant from the National Cancer Institute. Organization Table 8 Website/Internet Resources For Pain Education Website Address American Chronic Pain Association American Pain Foundation Cancer Care, Inc. City of Hope Pain/Palliative Care Resource Center International Association for the Study of Pain Management of Cancer Pain OncoLink s Pain Management Page Pain Link Pain Net Pain Solution Associates Pediatric Pain: Science Helping Children The International Center for the Control of Pain in Children and Adults The Resource Center of the American Alliance of Cancer Pain Initiatives (AACPI) Understanding Cancer Pain Wisconsin Cancer Pain Initiative

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