When There Is No Benchmark: Designing a Primary Care-Based Chronic Pain Management Program from the Scientific Basis Up

© U.S. Cancer Pain Relief Committee, 1999 0885-3924/99/$–see front matterPublished by Elsevier, New York, New York PII S0885-3924(99)00021-4

38 Journal of Pain and Symptom Management Vol. 18 No. 1 July 1999

Special Article

When There Is No Benchmark: Designing a Primary Care-Based Chronic Pain Management Program from the Scientific Basis Up

Marilee I. Donovan, PhD, RN, Kitty Evers, MD, Paul Jacobs, MD, and Steve Mandleblatt, MD

Integrated Pain Management Project (M.I.D.), Departments of Health Education and Psychiatry (K.E.), Departments of Occupational Medicine and Physiatry (P.J.), and Departments of Internal Medicine and Recovery Resources (S.M.), Kaiser Permanente, Portland, Oregon, USA

Abstract

Managed care has been accused of ignoring the patient with pain. The challenge for a health maintenance organization (HMO) was not just how to deliver state-of-the-art care, but how to deliver it to the 40,000 members who experience chronic pain at a reasonable cost and with enduring outcomes. This article describes how one managed care organization set about improving the care of patients with chronic pain. The article includes the design process, the model implemented, and some suggestions for transfer of this technology to others who might want to explore developing a similar model.

J Pain Symptom Manage 1999;18:38–48

. © U.S. Cancer Pain Relief Committee, 1999.

Key Words

Chronic pain, managed care, group visits, quality improvement

Introduction

Managed care has been accused of ignoringthe patient with pain. This article describeshow one managed care organization set aboutimproving the care of patients with chronicpain. The challenge to this health mainte-nance organization (HMO) was greater thanthat faced by other care delivery systems.The challenge was not just how to deliver state-

of-the-art care, but how to deliver it to the40,000 members estimated to experience re-current or chronic pain at a reasonable costand with enduring outcomes.

Often a practice improvement builds on a“best practice” in another organization or atanother site, or uses it as the basis for an im-provement process. Originally, the pain man-agement project described below was conceivedas a quality improvement activity. However, itsoon became evident that not only were cur-rent practices undefined and ineffective for asignificant subset of members, but that therewere no models to emulate. For others facingthis kind of fundamental quality planning pro-cess, the methods outlined in this article maybe helpful.

Address reprint requests to:

Marilee Donovan, PhD,RN, Health Systems – 5 KPB, Kaiser PermanenteBuilding, 500 NE Multnomah St., Portland, OR97232-2099, USA.

Accepted for publication: September 17, 1998.

Vol. 18 No. 1 July 1999 Designing a Chronic Pain Management Program 39

Description of the Problem

Several different processes identified inade-quate control of pain as an area for improve-ment. In 1993–1994, the marketing departmentof the HMO convened several member focusgroups to consider access-related issues (hoursof operation, waiting times, appointing processes,etc.). The need for adequate pain relief was arecurring theme. Internal audits indicated thatpain was one of the 10 most common reasonsfor calls to telephone advice nurses and that in-adequate pain management was one the mostcommon reasons for a member complaint.While this was happening, the pain researchcommunity was continuing to describe prob-lems associated with unrelieved pain, includ-ing reports that suggested long-term physio-logic consequences (that is, hypersensitizationof neurons or immunosuppression).

1,2,3,4

The process of defining the problem hadthree phases: quantifying the problem, charac-terizing the problem, and then confirming thefindings with clinician groups during the solu-tion design process itself.

Quantifying the Problem

The literature reviewed indicated that 5–15%of the population suffered from some type ofchronic pain syndrome.

5–7

For more than 25years, The Northwest Region of Kaiser Perma-nente has maintained an extensive data set ona 5% sample of members. This is used to projectcertain information about the total member-ship. Review of this data indicated that 15% ofmembers sought treatment for chronic painsyndromes in the last year for which data wasavailable. The rates reported in the literatureare often a response to survey at one point intime and may under-represent the problem;the Kaiser data include any contact with themember over an entire year and may over-represent the problem. In designing this project,the more conservative 5% was employed for allcalculations and projections.

Characterizing the Pain Experience

To characterize pain from the perspective ofthe persons experiencing it, a survey was dis-tributed to a randomly selected sample of 500members who had been treated for chronicpain during the past 2 years. The pain andfunction questions of this instrument were

those used in the Wisconsin Brief Pain Inven-tory (BPI), an instrument with established reli-ability and validity in a variety of painful condi-tions and in many different cultures.

8

Onlythose specialty services which coded patients ina way that allowed identification of the subsetof patients with chronic pain from among allpatients treated by this service were included.These services included anesthesia block clinic;physical medicine; physical therapy groups forback pain and fibromyalgia; health educationclasses for chronic pain and headache; tem-poromandibular joint clinic; biofeedback; anda small group seen for case management bythe author. Patients treated by only primarycare, neurology, or neurosurgery were not in-cluded because patients referred to these ser-vices didn’t have pain-specific codes that couldidentify them. Of the 500 members selected,17 were not able to be located; 235 returnedthe survey questionnaires in response to a sin-gle mailing. Twenty percent of the respon-dents reported experiencing pain greater than7 on the 0–10 numeric scale of the BPI at thetime they were completing the questionnaire;50% reported experiencing pain greater than7 at some time in the past week. More thantwo-thirds reported that the pain interferedsignificantly with their general activity, mood,walking, work, sleep, joy in life, and relation-ships with others. One-third reported that theyreceived little or no relief from any of the ther-apies they had tried in the past. These figuressuggest that there were at least 1000–2000members in need of a chronic pain manage-ment program annually.*

The Design Process

Evidence-based Approaches

A review of the literature (primarily reviewarticles or meta-analysis) was summarized in aTable of Effectiveness (Table 1).[The litera-

*

Based on the survey of members who had beentreated for pain (20% reporting pain

.

7 at the timeof completion of the survey), the minimum numberwho would be appropriate for these group visits wasestimated to be 1000 annually. Using 5% of the adultpopulation (from literature review) and the 20%who reported pain

.

7 at the time of completion ofthe survey, the estimate of minimum number was2500/year.

40 Donovan et al. Vol. 18 No. 1 July 1999

ture search was an evolving process and even-tually included more than 300 articles. Theliterature review was supplemented with inter-views of 26 national leaders in the AmericanPain Society who were asked, “If you had theopportunity to improve pain management for300,000 people, what would you do?” Designteam members communicated with other KaiserPermanente regions, which were planning orconducting chronic pain programs. Severalthemes emerged which influenced the designof this pain program:

• Models of chronic pain treatment includedmultidisciplinary pain clinics and regionalreferral centers or programs, but no multi-disciplinary programs were found dispersedto each primary care settings in the system.

• The populations of patients reported inthe literature were carefully selected. Weir

68

and Turk

69

reported that only a small per-centage of those identified with chronicpain were ever referred to a multidisci-plinary pain center and fewer than 25% ofthose referred successfully complete theprogram. The design team was hesitant togeneralize from the findings from thesehighly selected populations to a programcommitted to decreasing the pain, painbehaviors, and health care utilization of

all

members with chronic pain. Clearlythe processes of trying to reach even the1000–2000 most distressed of these indi-

viduals would need to be different fromthe processes utilized by referral pain clin-ics treating small highly screened popula-tions.

• Many therapies are effective with the sub-groups of the population suffering fromchronic pain. No therapy was consistentlyeffective, across multiple sources reviewed,for more than 50% of the patients initiallyselected for treatment.

9–70

The more ther-apies included in the pain managementprograms, the more likely it should bethat a given individual will find a therapythat is helpful.

• The dropout rates for a variety of thera-pies ranged from 30–61%.

21,40,56,68,70

Therecurrence rates for pain were reported tobe 14–80%.

21,68,69

Experts were beginningto suggest that the match between therapyand individual could be critical to the ef-fectiveness of the therapy and to the attri-tion rate.

54,56,71

Determining a way to pro-vide individualized therapy in a groupsetting was a design challenge.

Interviews

Health plan leadership approved the projectunder the general category of quality improve-ment. Because of the number of large projectsoccurring in the region (including closing oneof the organization’s hospitals), the regionalleadership charged a design team of only four

Table 1

Effectiveness of Therapies—State of the Science 1995

Therapy Type Findings References

Acupuncture Meta, pre-post

1

/? 9,10Behavioral Pre-post, review, RCT, meta

1

/?/

2

11–19Biofeedback Review, RCT, meta

1

/? 16,19–23Blocks RCT, meta, review

1

/?/

2

21,24–28Education Meta, RCT, Review ?/

2

21,29–33Exercise RCT, review, meta, correlation

1

/?/

2

21, 34–40Manipulation Review, meta, RCT

1

/? 21, 41–45, 66Multidisciplinary pain clinic Meta, review, longitudinal, survey

1

/?/

2

46–56Antidepressants Review, meta

1

/

2

57–59Adjuvants RCT

1

60–63Capsaicin Review ? 64NSAIDs Review

1

21Muscle relaxants Review ? 21Opioids Review, pre-post

1

/

2

21, 65Physical modalities Review, meta, RCT ?/

2

16,21,40,66Surgery—back Review ? 67

Abbreviations:

RCT

5

randomized clinical trial; meta

5

meta-analysis; prepost

5

non randomized clinical trials;NSAIDs

5

nonsteroidal anti-inflammatory drugs.


members and four meetings with developing asolution to improve the care of patients withchronic pain. Each team member was selectedto represent two key constituencies: Member1—a psychiatrist with appointments in mentalhealth and health education; Member 2—anaddiction medical specialist who was also apracticing internist; Member 3—the Directorof Physical Medicine who also held an appoint-ment in Industrial Medicine; and Member 4—the Project Director who held an appointmentin nursing and Health Systems and had accessto national experts. Though the limited size ofthe team seemed to be an impediment, it turnedout to be an asset. Clearly the team did not rep-resent all stakeholder groups; therefore, an it-erative process was conducted. This included aseries of interviews, reports, and forums to as-certain what key groups thought the real needswere and what an ideal solution would looklike. The design team members interviewed 80clinicians (physicians, physicians’ assistants, nursepractitioners, pharmacists, physical therapists,social workers) and 20 managers. These inter-views elicited their views on the current state ofpain management in the region and their sug-gestions for improving care to these members.

Confirming the findings with the cliniciansof the region occurred throughout the designprocess. The minutes of the team meetingswere shared by electronic mail with more than100 key members of the HMO’s clinical andadministrative staffs. They were also sent tothose involved in pain management or otherprojects related to pain management (e.g., theanesthesiology block clinic staff, the headacheguidelines committee).

These interviews made it clear that the solu-tion(s) must address the following:

• Any practical solution must be primarycare based rather than referral or spe-cialty based. It must be available to asmany members as possible. It would beideal to have it offered in the primary caresettings where it could be easily used byprimary care providers. The clinicians pro-viding this therapy should be colleagueswho are known and trusted by primaryproviders and with whom the primary pro-viders could readily communicate.

• Improving the management of chronicpain would require organizational and

process improvements and clinicians whowere interested, willing and educated totreat these patients.

• The solution would need to include be-havioral, physical, pharmacological, psy-chosocial, and life style interventions.

• Most clinicians and managers shared aparadigm composed of misconceptionsrather than the latest scientific findings(later termed the paradigms of pre-1990vs. post-1995; Table 2). Those interviewedand internal documents often describedchronic pain as a “set of learned behav-iors” or a mental health problem. Chronicpain patients were labeled as drug seekingand several projects to limit access to opi-oid drugs were implemented in the previ-ous decade. Many clinicians believed thatthe use of opioids for chronic pain was “il-legal” and that “science had shown thatopioids make the pain worse.” The au-thor’s access to the leadership of theAmerican Pain Society, to the work ofsuch pioneers as Portenoy

65

and Foley,

72

Joranson,

73

Hill,

74

Bennett,

75

Coderre,

1

Max,

59

Cleeland,

77

Turner,

22

Miaskowski

78

and to the early drafts of the APS-AAPMconsensus statement on

The Use of Opioidsfor the Treatment of Chronic Pain

79

was in-valuable in helping the design team beginto replace the pre-1990 beliefs with evolv-ing scientific findings.

The first draft of the model program was re-vised based on feedback from the electronicdistribution of the draft to all who had partici-pated in the interviews or surveys. Members ofthe design team presented the second draft ofthe program to two primary care departmentsfor their reaction and input. The extent towhich the interviews and electronic mail hadeffectively represented the need of the primaryproviders was demonstrated by one familypractice physician whose response at one ofthese meetings was, “You never interviewed meor anyone from my department. How did youknow this is what we needed?”

The Pain Management Model Developed

The pain management model consists of aseries of six group visits directed by a multidis-


ciplinary team in each of the 11 medical officesin the region. Each multidisciplinary team con-sists of a nurse, a pharmacist, a physical thera-pist, and a social worker or mental healthcounselor from that medical office. These werenot new employees; they were a nurse, a socialworker, and a pharmacist from the modules inthat primary care setting. Their original jobswere not significantly modified to free them toparticipate in this project. Because group visits

were to be an alternative and more effectiveway to work with patients they were already see-ing, the Pain Management Group Visits wereto be part of their regular ongoing responsibil-ities. After completion of the first series of vis-its, each team member would participate in2–3 groups/series. For example, after the su-pervised training period, the pharmacist wouldbe in the pharmacy filling prescriptions 40hours weekly but on the week he was to con-duct the group visits, he would fill prescrip-tions for 37 hours and have 3 hours to prepareand conduct the group visit. The primary pro-vider (physician, nurse practitioner, or physi-cian’s assistant) would participate through re-ferral, conferring with members of the team,reviewing the weekly reports sent on each pa-tient’s participation and progress, and a postgroup visit to discuss the treatment plan devel-oped as part of the group.

The team members participated in three fulldays of team education and supervision of thefirst series of group visits. The design team esti-mated that 10% of the patients who participatedin the group visits would need some additionalcounseling, coordination, or therapy. The projectdirector was available to assist team membersin providing care, evaluation, and planningand short-term case management.

The series of pain management group visitsreflected the latest scientific thought regardinghypersensitization of the nervous system. Thefoundation of these visits has four principles:reduce factors that increase pain; increase fac-tors that reduce pain; use a combination of ap-proaches that have scientific evidence for theireffectiveness; and modify the approach asneeded for the individual. Each visit includesnew knowledge and discussion; positioning,stretching, and exercise; coping strategies; pac-ing; and medication use. During the six visits,an individual will learn and practice many newskills. Homework assignments and discussionof their effects emphasize that control of chronicpain requires daily self-care. At the conclusionof the series of visits, each participant will de-velop a written pain management plan and willformalize this plan with his/her primary careclinician at a post-group visit.

Regional leadership approved the pilot phaseof the project in February 1996. Each medicaloffice was to decide when they would like toimplement the pain management groups. The

Table 2

A Revolution in Knowledge Regarding Chronic Pain

Pre-1990 beliefs Post-1995 scientific findings

Chronic pain is a learned behavior

Chronic pain includes: windup; plasticity of the nervous system; hypersensitivity of afferent neurons; lowered threshold for activation; prolonged excitation of neurons; conversion of nonpain fibers to pain fibers; depletion of neuromodulating processes; effects of sleep deprivation and of stress impair coping

80,81

Psychological testing often used to determine if pain is real, treatable, result of secondary gains

“The body of psychology research into pain has failed to yield compelling evidence for a direct causal relationship between psychological factors and pain in the general population of pain patients.”

76,82,83

Opioids are ineffective and inappropriate in treatment of chronic pain

The effects of opioids vary; the effective dose may need to be much higher than usual doses; in combination with other methods they are likely to be the most effective therapy.

65,79

Boards of Medical Examiners prohibit the use of opioids to treat chronic pain

American Academy of Pain Medicine and The American Pain Society Consensus Statement: The use of opioids for the treatment of chronic pain; Oregon Intractable Pain Act, 1996; Washington Health Department Guidelines for the Use of Opiates in Chronic Pain, 1997

79,84,85

Pain doesn’t kill Assisted suicide movement;

86

Impaired immunity;

2

Secondary illnesses: thrombi and pulmonary emboli; accidents; multiple surgeries

“Learn to live with it”“No pain, no gain!”

“...the results of research on the role of neuroplasticity in the pathophysiology of pain are also consistent with the conclusions that more severe acute pain—and the greater afferent barrage that accompanies it—increases the likelihood that pain will persist.”

87


implementation process was designed so that2–3 new teams would attend team educationand begin seeing patients each quarter. Withthis timeline, all medical offices would havesuch a group within 18–24 months if the pilotsites were successful.

The two pilot teams completed their educa-tion in June 1996. The first groups of patientsbegan to attend the multidisciplinary painmanagement group visits in July 1996. Expan-sion to other sites began in February 1997. ByNovember 1997, eight teams were conductinggroups and 237 patients had been referred tothe pain management groups. In the secondyear of implementation, six of the sites pre-pared several team members in addition to thebasic 3–4 team members. By the 23rd month ofimplementation all 11 sites had teams seeingpatients.

Impediments to Implementation

The model as implemented has demon-strated promising results. The attrition rate hasvaried among settings but overall it was 30%.Patients who dropped out of one series of visitswere allowed to complete the series at a latertime. The early evaluation indicated that pa-tients who completed at least three of the sixvisits began to rely on their own skills tomanage their pain. They reported less pain(though not statistically significant at the

P

,

0.01 level), statistically significant reduction infunctional interference as measured by the BPI(

P

,

0.01), increased satisfaction, and reduceddemands on the health care system (savings ofapproximately $1100 per member per year).Despite this success, several issues arose whichthreatened the viability of the program. Manyof these will likely need attention if others im-plement a similar primary care based program.

First, team members and their colleagues ac-cepted the pre-1990 paradigm as fact. Threedays of education, readings, and audio tapesfrom American Pain Society Scientific meet-ings helped team members move in the direc-tion of the post-1995 scientific findings. Theythen returned to a primary care setting whereother clinicians and managers continued to ac-cept the pre-1990 beliefs as “truth.” Table 2summarizes the major convictions that neededto be addressed. Each team used a poster simi-lar to Table 2 and a book of supporting litera-

ture to begin to educate others in their prac-tice settings.

Second, many of the team members hadnever experienced the intensity of anger ex-pressed by many of the members who partici-pated in the pain management group visits.During the first visit of each series of visits, theteam members introduce themselves and askthe patients to introduce themselves and whythey are in the group. The first patient in thefirst group began by saying in a forceful, angrymanner: “My name is Rick . . . I used to be alawyer until the pain got so bad that I couldn’twork and you wouldn’t help me and it ruinedmy life . . . and I’m suing all of you.” Anger,why patients are so angry, how to recognize it,how to use it positively, and how to avoid feel-ing personally attacked was added to the teameducation. Angry patients have generally beenvery successful in obtaining better pain man-agement as an outcome of the multidisci-plinary pain management groups.

Third, the pain management model givespatients the knowledge and skills to managetheir pain on an hour-to-hour basis. Some pa-tients (less than 10% in our experience) donot want that degree of control. These are of-ten individuals who never perceived that theyhad much control in their lives. They seem tointerpret attempts to encourage them to as-sume control for their health and pain controlas abandonment by their care providers. Withtime and guided experiences, some can learnthat self-control is positive. For example, whenone patient was able to stop a headache withimagery he began to recognize the benefits thisprovided over an emergency room or UrgentCare Visit. Another patient wanted surgery forher neck pain. She was diligent in eliminatinglifting and reaching for 5 days as homeworkfrom one of the group visits. This significantlyreduced her pain. She was then willing to con-sider options other than surgery. Over time,these individuals may accept more control andmore responsibility. This change in their per-spective, however, does not occur in six groupvisits; in some cases even small improvementscan take several months.

Fourth, more patients than projected neededcase management in addition to the group vis-its. The design team estimated that 10% of thepatients would need time in addition to thegroup to develop a practical treatment plan,


to resolve complex medication issues, or forcounseling. These patients reported pain dura-tion of 6 years longer than those described byTurk in his review of multidisciplinary painclinics.

69

More than 30% of the patients partici-pating in the pain management groups actu-ally needed one or more additional visits with acase manager, pharmacist, and/or social worker.Finding time to do this additional work is anongoing struggle for all members of the teams.

Fifth, the education of many physical thera-pists encourages “pushing past the pain,” or“no pain no gain.” They have been unable towork in a program that says instead “start at apoint below the initiation of pain and progressslowly so as to avoid stimulation of hypersensi-tive nerves.” Even though the physical thera-pists participated in the full three days of edu-cation and six supervised group visits, manywere unable to shift their approach. They didnot adhere to the principles or content of thegroup visits and subsequently withdrew fromthe program. Most primary care–based painmanagement groups now operate without aphysical therapist. The remaining three physi-cal therapists serve as advisors to all teams.They ensure that the latest approaches are con-sidered and included in the group visits (i.e., aphysical therapist suggested including some in-formation about microstimulation along withtranscutaneous electrical nerve stimulation[TENS]).

Sixth, the approach of this program is so dif-ferent from what most clinicians have learnedin their education that they experience signifi-cant cognitive dissonance and associated anxi-ety. In addition, their peers and supervisors donot have the knowledge that forms the basis ofthe group visits. Even though program evalua-tions indicate that the program is successful,those not involved in the program are oftenskeptical, resistant, and critical. Regional con-tinuing education for all clinicians did not oc-cur until the third year of implementation.Many team members feel caught in a battle be-tween the pain management team and theirdepartments. They spend only 1–2 hours aweek with the pain management team. Theyspend the remainder of the week with theircolleagues who do not have the same painmanagement education. Nurses and socialworkers seem to have less frustration related tothe pain management program than pharma-

cists and physical therapists. The nurses and so-cial workers report to the coordinators of eachclinic. They are often the only person of theirdiscipline in the module or clinic. Pharmacistsand physical therapists report to a departmen-tal manager at a distant regional site. They alsowork side by side with colleagues who do notunderstand or support their pain managementinvolvement.

Conclusions and Recommendations

The experience described in this articledemonstrates one way to take new science in arapidly changing field and use it to design anindividualized treatment plan. A large teamwith many meetings was not necessary. Therewere three essential components in the designprocess: ready access to the newest informationpresented at national pain meetings; commu-nication links (electronic and face to face) toinvolve the final users in the design process;and a dedicated design team.

The scientific foundation of the multidisci-plinary group visits was sound and the painmanagement groups did reduce health careutilization. These factors are not sufficient tomake the program implementation successful.This experience suggests that several organiza-tion factors are necessary to successful imple-mentation:

• designated leadership beyond the projectteam itself to obtain and integrate find-ings within the overall organization (forinstance, the Department Head of Inter-nal Medicine or Family Practice)

• a clear agreement regarding the commit-ment of each team member’s time and spe-cific behaviors. The minimum commitmentis that each team member participate in 2–3of the group visits in each series; that eachfollows up with patients who need theirparticular skills; and that each delivers thegroup visits as designed without modifica-tions to the essential elements. Regularteam meetings (weekly when groups aremeeting and twice monthly during anybreak between scheduled groups) wouldbe useful for consistency from visit to visit,early intervention with high-risk patientsin the groups, and peer support for theteam members.


There have also been unanticipated benefitsof this primary care–based multidisciplinarymodel. The most exciting spin-off of thechronic pain management groups has beenthe role that participating patients have as-sumed in the health care of family members.Patients who have needed surgery have re-quested that their surgeon plan their postoper-ative pain management with a member of thechronic pain management team. Some patientshave taken literature cited in the group visits toan appointment of a family member who wasnot a member of the HMO. For instance, onemember took the materials distributed in thegroup to an appointment with her mother’sprovider. She requested that this physicianread the material and treat her mother in a sci-entifically appropriate manner. Most profes-sionals are very receptive to the literature andwant to practice correctly. It appears that anymethod that gets the newest information to thepracticing clinician can be beneficial. Theadoption of new ideas is influenced by rele-vancy; therefore, it is possible that new knowl-edge delivered in association with a particularindividual patient may have more immediateresults than knowledge gained from continu-ing education or professional literature.

Members who have participated in thegroups have also seen benefits unanticipatedby the pain management teams. One patientdiscovered that when the pain was not all-con-suming, he was a poet. Can anyone who readshis words ignore his evaluation of the effects ofhis participation in the multidisciplinary paingroup visits?

a used guitarI feel like the used guitarI bought yesterdaymy case is battered and worninside there is music.11-05-97c.jay goodwin

88

Acknowledgment

The project could not have existed withoutthe creativity of the design team. It could nothave succeeded without the commitment ofthe multidisciplinary pain management teamsin each setting. It could not have survived with-out the support of Paul Wallace, Ron Potts,

and Alide Chase, the corporate sponsors. Aspecial thanks to Barbara Dow who helped withthe original dream, the design, the surveys,and the editing of this article.

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When There Is No Benchmark: Designing a Primary Care-Based Chronic Pain Management Program from the Scientific Basis Up