DEVELOPMENT

AND

DISSEMINATION

OF

ARE

ARTHRITIS

PATIENT

EDUCATION COURSES Nearly every grant proposal end with a discussion of how needs program or innovation will be disseminated. Most program, however, are created for

dissemination not the widely used. This paper documents the development, implementation, and national dissemination of the Arthritis self-management (ASM) course. BACKGROUND The National Arthritis Act (PL 93-64) was passed by congress in 1973 with major objective being to demonstrated and stimulate the promtpt and effective application of available knowledge for the treatment of patient with arthritis are related musculosketel disease. Multipurpose Arhritis Center (MAC)s one

mecahanism for accomplishing this objective; the stanford Arhritis Center at the Stanford School of Medicine was funded as one of the early MAC. In keeping with the congresinal mandate, Stanford proposed to develop an effective low-cost arthritis Patien education program that would be easily replicable. A patients needs assess ment was conducted using salient belief methodology. This methodology asks patient waht thing come to mind when they think about arthritis. Miller and Fishbein and Ajzen have suggested that the first item beliefs. The primary concern identified were pain, disability, fear, and depresion. Deformity was distant fifth. Based on this assessment, a literature review, and advice of professionals working in the field, the 12 hour community based ASM course was develop. It has several attributes that differentiate it from patien education and at the same faciliate its dissemination.

ASM is Comunnity based Since most people with arthritis live inthe community and are seldom hospitalized, it seemed appropriate to center bthe program in community. The six 2 hour classes are held in senior centers. Churches, mobile home parks, libararies, shooping

centers, and sometimes in hospitalconference rooms. The only criteria for siles are that they be accessible to the handicapped, opento the public, and available free or at very low lost. Shopping centers have proven to be especially good, as they are considered a safe middle ground for many types of people.

ASM emphasizes self-help Many patient education courses emphasize understanding of disease. While this is some what important, the ASM course stresses sikill necessary to ease the problem caused by arthritis. Rather than suggesting exercise in a prescriptive manner, for example, the ASM course teaches participant to develop individualized exercise and relaxation programs. The philosophy of the course is to present a large number of self-management skill, and assist participants in choosing the techniques that work best them. Skill taught include exercise, relaxation, use of heat and cold, joint protection, patient-physian communications, analysis of nontraditional treatment, and problem solving. Beacause the course emphasizez individual skill development, people with all forms of arthritis can benefit. While rheumatoid arthritis is very different from osteoarthritis, the skill needed for developing an exercise program are the same.

Three-fourths of all ASM course leaders are lay people who receive 15 to 18 hours of training and teach from standardized protocol. The rest of the leaders are active or retired health care professionals. In all cases, be they rheumatologist ore retired firefighters, they receive the same training. There are two reasons for the use of lay instructors, first, more than 36 million people in the united states have arthritis. Thus to offer eucation to even a small fraction requires a massive effort. Not enough health care professionals have the knowledge, skill, or desire to mount such an effort. Also, the time of health care professionals is expensive. In an increasingly economy-conscious.health care enviroment, arthritis education is not seen as a priority. Second, there is good evidence that some of the strongest patient educators in the most successful program have been lay people.

Such programs as Alcoholics Anymous, Reach To Recovery (a program for mastectomy patients), and Mended Hearst all rely on lay instructors to model successful living with various chronic disease.

ASM materials simple and inexpensive There are no audiovisual materials used in the ASM course except a 20-page flip chart that is made by each leader. In addition, every course participant receives a copy of THE Arthritis Helpbook, which was specifically developed for the course and contains all the course content. By giving the book to participant, there is assurance that they take away standardized content and have a readily available source for inforcement. Many leaders have wanted to use fils, slides, or demonstrate self-help aids and devices. This is highly discouraged, as deviation from the course curriculum means other material is not covered, there is no quality control, on giving is being substituted for skill building. In addition, the use of films or similar media limit large scale dissemination. In many places, 20 or more course being given simultaneously. If each needed a film projector, screen, and darkened room, the logistics would soon become unmanageable and very expensive. Today, when the ASM course has become widely disseminated, adding even one page of material means making and distributing more than 10,000 copies a year. Something that easy in a hospital or single-site setting becomes almost impossible in a widely disseminated program.

ASM is carefully evaluated Probably the most important attribute of the ASM course that contributed to its dissemination was, its initial evaluation. Study participants were recruited by public service announcements in newspapers and on radio and TV. After applying for the course, all subject were randomized to either the immediate ASM course or to the course scheduled to be held 4 months later. Everyone filled out a lengthy self administered questionnaire at baseline, and again 4, 8, and 20 months later. In

california, approximately 75 % of the participants have osteoarthritis, 15 % have rheumatoid arthritis, and 10 % have other forms of arthritis. The average age is 64 years. The initial evalution involved 300 subjects. When compared to controls, ASM course participants demonstrated increased knowledge and frequency pratice of exercise and relaxation. Their pain-decreased by 15 % to 20 %. Using analysis of covariance and controlling for baseline status, all findings were ( P < .05). These cahanges deteriorated over time but reamined statistically significant for the full 20 months of the study. The same findings have been replicated in additional 400 participants.

THE DISSEMINATION PROCESS The arthritis Foundation (AF) is a voluntary charitable oraganization founded in 1948 to assist patients with arthritis and to support arthritis research. In early 1981, a new group vice-president for education joined the AF and toured the country, becoming acquinted with arthritis education programs. At that time, there was no standardrized national arthritis education program ; each chapter conducted education at it wished. One of this officers stops was Stanford University where he was taken to senior center to watch the new phenomenon of lay-led community-based arthritis classes. Shortly thereafter, the Standford Arthritis Center was asked to train some AF volunteers and staff to teach the ASM course and, more important, to train other to teach it. This was both an exciting and lrigthtening opportunity. It was one thing to run a carefully controlled experiment in Northern California and quite another to have the course taught by strangers in cities thousands of miles away. Before training AF volunteers and staff, agreements were/reached on two points. First, the course would not be altered without permission of its origininators and, second, an evaluation would be done in the pilot dissemination sites. In the summer of 1981, 25 AF staff and volunteers came stanford for a week of intensive training. The trainees represented 22 AF chapters and included two regional vice-presidents and three national staff members. Beacuse there was some resistence among arthritis health care prefessionals to having lay patients educators care was taken to diffuse this issue. One of the

trainees was immediate past president of the Arthritis Health Professionals Assosiation (AHPA). She was well respected and was a strong supporter of the ASM concept. The current president of APHA was also a trainee. In addition, a health educator who had done her field work at stanford and had later started a successful ASM program in phoenix was part of stanford summer training staff. An AF staff person from phoenix was one of the tarinees. Thus, key gatekeepers involved as both staff and trainees were ready to lend support to the program during the initial training. The importance of such opinion leaders for the successful difflusion of innovation has been recongnized by both Merton and Rogers. Any new innovation meets resisttance ; this occured during the 1981 training in two forms. First, there were several trainees who were resistant because they had not participated in the creation of the ASM course. In medical circles, this resistance is aptly named the NIH sydrome : Not invented Here. The second major problem was the anticipated resistance to use of lay leaders. While this was couchead in terms of participant safety, it was clear that the real issue was professional territoriality. Thus, nurse thought lay people could teach everything but medications, physical therapists felt lay people could teacheverything but exercise, and occupational therapists (Ots) felt that only Ots should teach joint protection. However, the resistance was generally mild, and time was allotted in the tarining for a full discussion. Also, the training process allowed for a turning over of power from the Standford group to the AF. A simply but highly symbolic action representing this change of power was a name change from the ASM course to the Arthritis Self-Help (ASH) course. By the end of training, all trainees agreed to go back their respective chapters and give an ASH course. Following this, they were to train 10 to 20 people in their area to also give the course. Finally, all course participants were to receive pretest and posttest evaluations that were to be sent to satndford for analyses. These evaluations were a shorttened version of those used in the initial study. The measured knowledge, behavior, disability, pain, health care utilization, and patient satisfaction with medical care.

RESULTS By December 1981, 18 of the 25 trainees had give at least one ASH course with little professional resistance and strong public acceptance. It was a this point that the ASH course took one life of its own. Almost everywhere the course was given, initial public demand outstripped local chapters ability to give course. From the beginning, Standford had urged a slow,planned dissemination with careful evaluation. While the AF agree with this plan, 15 to 20 local chapter were eager to have new visible program and demanded to be added to those offering the ASH course. When data arrived from the initila trainees, it became obvious that data collection was a low priority. Although each chapter was supllied with question naires and a written protocol, data collection at the best was spotty. In some cases only pretest and posttests were collected but only full sets of data (from persons) given both pretests and posttest were sent to stanford. Thus, it was imposible to calcute a drop out rate. Despithese problems, data were received from 276 ASH participants in 18 chapters Analysis showed results similar to but weaker than those of original stanford study. In spring of 1982, the AF patier. Services Committe, which was charge with overseeing the ASH course, decided to undertake a second evaluation. Again pretest/ posttestdesign was used. This time, the study subject were ASH participans in course taught by leaders trained by the 1981 summer trainees. The last step in the separation from the original site had been completed. This time, more care was taken with data collection, although problems still existed. With 239 subjects in 12 cities. The results werte again encourning. Participants had significans increases in knowledge, the pratice of exercise and relaxation, and a decrease in pain. During the latter part of 1982 and early in 1983, the demand for the ASH course continued to grow. The problem was that only those people trained in the 1981 was qualified to train eaders and their resources were stretched to the limit. At this time, the AF wrote a series of course content and process but also the way in which it was administered. In addition, the trained several group of leaders to become trainers for leaders.

One of the voriginal ASH site was phildelphia. Beacuse of local enthuasiasm for the course, the pennysylvania state Health Departement decided to offer the course. Thus, in the spring 1983, health departement staff from throughout the state were tarained as leaders. The course was also being offered in other sites from Walter reed Army Hospital in washington, DC, to kaiser foundation Hospital in southern California. ,ost, but not all, of these course were offered in conjuction with local AF chapters. As demand for the course grew so did media attention. Which in turn created more demand. Stanford assisted National Public Television in producing five-minute selfhelp segments for over Easy, a daily program for senior. After each segment, viewers were urged to contactan AF, post office box for information. The initial segement drew thousands of requests. Other media from To Day Show, to parade magazine, to the national Engquirer featured program. By the end of 1985, approximately 15.000 people from more than 70 cities had attended course. In addition, the course had been started in both New Zealand and Australia. However, a major concern continued to be evaluation. In many ways, the proverbial cat was already out bag. It was to late to study the dissemination process. In 1983, after a long search, fund were secured for the long-awaited randomized study in five sites. Again, there were problems. Most AF chapters refused to participate because they felt that the randomization process would anger controls and hurt the bpositive image created for the chapter by the coarse. Chapters and other organizations persisted in this argument even after experience had shown that (1) controls were seldom angry and (2) participants were than willing to fill out the lenghty questionnaires. In all, it look nearly 18 months to enroll all five sites ; even then only three of the five sites were truly randomized: (1) chicago, (2),cincinati, (3)portland, oregon. In cleveland, a study involving inner city participants used a wait-list control design. In Salt Lake City, a pretest/ posttest design was used. Surprisingly, data collection has been easy, with fewer dropouts and better completion rates than in the northern california studies. The problems feared by chapters have not arisen. Data collection for this study will be completed in early 1986.

In 1984, the AF received a grant from the office on aging to disseminate the ASH course as well as other AF programs through local agencies on aging. This grant also has a component to evaluated the effect of not only the ASH course but also an arthritis water exercise program. Thus, two evaluation efforts are currently underway.

LESSON LEARNED Keep it inexpensive Probably nothing made the ASH course more acceptable to both AF chapters and the public than its low cost. Actual course expenses vary from $15 to $30 per person depending on administrative cost and whether or not leaders are paid. This means that most course cost can be recovered by student fees or grants from local organizations. In various parts of the country such organizations as local fhealth departemens, community colleges, or businesses have helped pay for the course. The general policy is charge $10 to $20 per student, with easily acailable scholarships for those who need them. No dissemination without evaluation. Possibly the biggest mistake made in the beginning was not inssisting on a randomized evaluation as part of the first phase of dissemination. Unfortunately, many health innovations are disseminated without any real evidence of eifica. In this case, it seems a bit risky to base natiotional program on evidence from 300 example. Unforunately, once a program is deminated takes on its own political ..bla3...Efficacy may longer be the most important consideration. For example, ..bla3..studies have shown that new carefully patients do as well at home as in ..bla3..intensive care units. However, because of legal other considerration as these studies have never been located in the United States, nor have..bla3..patients in the United States ..bla3..cared for the at home. Bla3...the case of the ASH courses, evaluation has become difficult because AF ..bla3.. use the courses to create a public ..bla3..that they fear may be damaged by

..bla3..In their view, a happy public ..bla3.. important than proving the effectivenees of the innovation.

Management is imporatant Post patient education corses are defined as to content. However, ...bla3...the process carefully written. Taught is never given to administrated. For example, it is relatively easy..bla3..20 courses in a 100 mile area but much more to give 1.000 courses throuhtout the country. The AF has written a complete administrative manual the ASH course, with details from running a publicity campaign to selecting leaders. In fact, the documentation for the ASH course grown from one leaderss manual and The Arthritis help-Book to a complete library including (1) a leader training manual, (2) an administrative manual, and (3) a set preprinted courses flip charts. In addition, AF has started a periodic newsletter to keep contact with all ASH leaders. This careful documentation and communication system has helped maintain standardization and quality. Consider organizational and client needs The ASH course filled a large gap in AF programming . Although AF was the national organization for people with Arthritis, it had little offer beyond brochures. Thus, it welcomed a program which (1) gave visibilty, (2) provided service, (3) created a volunteer pool, and(4) increased the number of potential donors. At the same time, the program provided little of no deviation from the original organizational mission and used a minimum of organizational resources. The American cancer Society (ACS) provides another example of how a voluntary health agency reated to a successful health education innovation. In the late 1970, the California Division of the ACS funded a pilot program to increase the pratice of breast self-examination (BSE) among spanish-speaking women. The

program,culdaremos (which translates we take care ourselves) used opinion leader and trigger film to disseminate BSE to spanish-speaking women. It was highly succesful in recuiting spanish speaking volunteers, increasing the pratice BSE, and activating spanish-speaking women. However, after the garant period, the program died because it did not meets oraganizational needs. For exemple, it required

specialized bilingual staff. While it increased demands on the ACS, there was an equal potential for lund raising. In addition, the program rased many ethical and racial questions. The different fates of the ASH and culdaremos program illustrate the importance of organizational goals and political climate in the dissemination of patien education programs. ....................................................................................................................................... .......................... This paper has presented a history of one patient education program. One thing learned is that dissemination must be planned from the inception of a program. First, a good program may never be disseminated if is does not have an easily replicable design. Second, dissemination is as dependent on political climate as it is on program design. Finally, the reason for the acceptance or rejection of an innovation may have little to do with the original reasons for creating the innovation.

Childbirth education: a review of effects on the woman and her family THE DECADE of the 1960 brought about many changes directly affected the way men and women participated in the birth and their babies. Women began to deamnd information about pregenancy and labor and delivery. They were no longer content to reamain ignorant and helpless in the face of an extremely demanding physical and psychologic event in their lives. I hese women wanted to be awake and aware during childbirth process and wanted their husband present to provide them with emotional and psycologic support. Prior to the late 1950 and in the early 1960, analgesic anad anesthetic drugs were given in large amounts to women and often prevented couples from being aware and participating in childbirth. These vdrugs were provided primarily to modify the pain associated with childbirth: however, they also infered with.