FIGURE 1 Activity diary.
The methods just described illustrate combinations of the patient as his or her own behavioral engineer or reinforcement programmer working with the patient’s environment to provide continuing reinforcement of the target behaviors: exercise. In the illustrations, the exercises were ends in themselves and not antecedents to broader ranges of behavior. Had they been the latter, naturally occurring sources of reinforcement might have begun to take over to maintain performance.
GENERALIZATION THROUGH BROADENED ACTIVITIES
The prescribed exercises of the early stages of treatment must be linked to the broader behavioral clusters making up posttreatment activity. The overall plan is to exchange exercise, narrowly defined and prescribed at the outset of treatment, for meaningful vocational and avocational or leisure activity. The exchange process should be gradual and programmed systematically to ensure that there is adequate reinforcement to maintain performance during the transitional phase. As a patient becomes established in the target activities and they begin to yield sustaining reinforcement, the interim reinforcement provided by the treatment team can be faded out.
Some broadening of activity is a natural and inherent by-product of the increased activity level generated by treatment. In the hospital setting, for example, as activity level climbs, a patient will almost inevitably begin to interact with more other patients and more hospital staff than was true at the outset. Strolls to the lobby and visiting areas, visits to other patient rooms, coffee in the cafeteria, all are likely to yield some pleasure or stimulus variety and therefore reinforcement for the walking and body movement they involve. But the matter should not be left to chance. Active programming may be needed to ensure that these and other broader activities occur. Which elements of those discussed in the following sections are to be used will depend on the resources of the facility. All of them can be helpful and, where possible, should be used. Each of these avenues toward generalization requires certain minimum performance levels or stages of progress before they can be used prudently and effectively. Particularly, no activity should require a greater amount of energy or physical mobility than presently has been attained by the patient. A patient who can walk but 600 feet without interruption should not have a grounds pass extending more than 300 feet from the ward. A second qualification is that none of the activities discussed should expose the patient to more than casual and incidental reinforcement for pain behavior. The exception is where treatment has progressed to where the special attention of others to pain behavior no longer appears to deter patient activity. For example, two pain patients, each prone to commiserate with the other about the difficulties of walking, should not be allowed to stroll together until each has demonstrated the withholding of commiserating behaviors.
Recreation
Organized recreational programs within the hospital setting are most useful. The recreational therapist needs to be informed of the general nature of the treatment program and of the importance of avoiding social reinforcement or solicitousness at displays of pain behaviors. The approximate amount of uninterrupted standing, walking, and other exercise that the patient is presently able to perform should also be described. The therapist can then be encouraged to engage the patient in recreational activities within the prescribed physical limits.
Many patients long restricted by their pain problems are initially reluctant to enter into recreational programs. It becomes a matter of judgment as to how vigorously to pursue the matter. Sometimes the activity should be prescribed. Make clear that it is an essential part of treatment and not a casual or frivolous effort to entertain the patient. When it is prescribed, and the patient follows the prescription with at least some semblance of cooperation, a particular effort should be made the following day to provide additional acknowledgement and praise for that effort.
Recreational programs can also provide a useful medium in which to promote more effective patient-spouse interaction. The spouse may, for example, rehearse ignoring or tuning out pain behavior and providing social reinforcement for well behavior. Spouse participation in the recreational program can be invited and even prescribed.
Job Stations
The term job stations, as used here, refers to unpaid work within the hospital or related facilities. Hospitals, particularly large ones, have within their organization a broad range of jobs routinely being performed. Those work situations or stations provide an important potential opportunity to promote generalization and maintenance of treatment gains.
Questions have been raised about the fairness of using patients as unpaid employees. However, it is important to distinguish between patients in essentially custodial or long-term institutionalization and short-term or transient hospitalization. Some mental hospitals illustrate long-term care. Utilization of patients for extended periods to perform institutional tasks may be exploitative in these kinds of settings. Exploitation is a particular hazard if the work assignment does not have a substantial and clearly stated therapeutic objective.
The situation is different in relation to an operant pain program. Patients are in the institution for brief periods (5 to 7 weeks) and are assigned to job stations for even less time (1 to 5 hours a day for 2 to 4 weeks). More importantly, job station assignments have specific therapeutic objectives. Were there no such therapeutic objectives to job station assignments, no assignments should and would be made. Job stations are essential elements to the process of generalization. Job stations are not for the purpose of replacing paid with unpaid personnel, nor do they exist to help the hospita1. Job station assignments help patients.
Before dealing with treatment tactics in relation to job stations, a few administrative matters need to be considered. Administrative approval for developing a job station program requires first that the insurance carrier for the facility be contacted to clear the activity in regard to medical and accident liability matters. The assignment of a patient to clerk in the hospital gift shop, to clean tables in the cafeteria, or to fold sheets in the laundry is a prescribed aspect of treatment. In the medical and accident liability sense, any of those assignments is the equivalent of sending a patient to the x-ray unit for some laboratory procedure or to the occupational therapy room to work at a loom. In each case, accidents could happen. In each case, hospital employees and patients should receive equivalent protection from liability. In each case, the hospital employee is expected to do only his or her normal job; no more, no less. Coverage for patient and for employee should continue in job stations as they do in x-ray units or any place else.
Once administrative approval is obtained and liability coverage is established, the roster of potential job stations needs to be reviewed in regard to the physical demands they provide. Finally, job station supervisors need to be prepared to respond selectively to pain behavior and to activity or well behavior. Only then should patients be assigned.
Job station assignments should be reviewed in relation to posttreatment objectives as well as physical demands and activity generalization. The issue of posttreatment employment is often a sensitive one. There may be legal, financial, and emotional implications that need to be considered. These issues were discussed in Chapters 3 and 5. The immediate issue is that job station assignments may be indicated even where posttreatment employment is not anticipated. Job stations provide useful rehearsal at activity and movement in varied settings apart from any vocational implications. The patient who anticipates that he or she will not be employed and who further anticipates that wage replacement funds are contingent on not working may understandably feel threatened by the prescription of a job station assignment. The precise objectives of that assignment must be made clear. Third-party carriers may also require clarification on this point. A first objective of job station assignment is to provide a graded and controlled level of physical activity of a known character in settings sufficiently varied from the formal treatment setting as to promote generalization. Any vocational implications to the assignment may be totally irrelevant for a given patient. It is also true that job stations may provide the additional feature of exposure to and rehearsal at some particular form of work or working condition. A decision to expose a patient to a particular kind of work may be part of the preparation for posttreatment employment. If so, that, too, should be made explicit at the outset.
One implication of the various potential functions of job stations is that a given job station assignment need not be consistent with either the patient’s posttreatment vocational plans or his or her particular vocational interests. The more a job station assignment does fit in with interests or future plans, the more reinforcing it is likely to be. But exposure to the physical demands of a job station can be a sufficient reason for the assignment in a given case. That, too, needs to be made clear to everyone involved.
Care must be exercised in use of job stations that the total physical load imposed on the patient by the assignment is consistent with what is currently achieved in treatment. Prescribed exercises may be reduced and replaced by corresponding amounts of job station activity. Prescribed exercise may be leveled off and job station load gradually expanded in the movement toward increasing activity levels. Specific limitations of each patient need also to be considered. For example, the patient who presently walks 1000 feet twice per day should not: be assigned a job station 1500 feet away.
It is often helpful to deliberately shift a patient from one job station to another to promote additional variety and exposure.
Patients may eventually reach a point during an inpatient or outpatient program in which virtually the whole day is spent on job station assignments. A few days, perhaps a week or so, at such a level is often vital to establish appropriate activity levels. Such a schedule should not be discontinued until the patient seems capable of maintaining an equivalent activity level after treatment. At that point, job station assignments can begin to be faded, replaced by time at home, at work, or in pursuit of employment, depending on the goals of treatment. By that time, formal exercise may have been reduced to token levels or eliminated altogether. Posttreatment exercises to be done on a daily basis should be a part of the overall schedule.
Passes
Passes should become a specific and planned part of inpatient treatment. Other hospital treatment programs provide for passes that are diversionary or at the convenience and wish of the patient. This distinction needs to be made at the outset.
Passes provide learning opportunities. They provide access to generalization. They provide opportunity for rehearsal by patient and family of the behaviors that make up the objectives of treatment. It follows that adequate preparations are essential before passes can be put to work on behalf of treatment objectives.
The generally applicable preparations for the assignment of passes can be stated briefly. There may be additional specific preparations in individual cases, an illustrative few of which will also be noted.
1. Patients coming with problems of addiction, habituation, medication toxicity, or a recent history of utilization of multiple and surreptitious sources of pain medications should not receive passes until there is adequate control over supply and level of intake. That in turn, means that there will have had to be a minimum of a week of inpatient baseline medication observation and an additional week in which to stabilize the pain cocktail schedule. If the first cocktail schedule is more frequent than once each 4 hours, further time will be needed to bring the patient to a 4-hour schedule. Moreover, family training sessions should have advanced (Chapter 12) to the point that monitoring of intake and supply of pain medications will be effective during the life of a contemplated pass. In short, passes outside the hospital setting should not occur until there is assurance that the cocktail regimen will be strictly adhered to.
2. The physical demands of the pass must be continuous with those presently true in treatment. A pass should result in neither significantly higher nor lower physical demands. For the purposes of this program, a pass is not time out from treatment; it is an extension of treatment. This in turn means that patient recording and spouse observation of activity level and demands during the pass need to be assured. It also means that the pass cannot require performance levels not yet attained in treatment. The most common example of this issue pertains to the patient with distorted gait or who, for other reasons, has thus far achieved only limited amounts of adequate free ambulation. A patient who can walk but 500 feet should not go on a pass that requires 800 feet to the car or from the car to the house. If a patient is in a gait-shaping program providing for interim use of a wheelchair and it is decided to prescribe an evening or weekend pass (rarely a wise decision when the patient is still wheelchair-bound), there must be assurances that the same restrictions on walking prevail during the pass as apply in treatment. Patient and spouse need to agree to these constraints.
3. Patients who have spouses or other family members who previously effectively reinforced pain behaviors or inhibited activity and well behavior should not go on passes with those people until progress has been made in spouse or family retraining. The first pass should be deferred until the spouse has progressed in the retraining program (Chapter 12) to where patient pain behaviors are effectively counted, recorded, and tuned out. Thereafter, passes become rehearsal opportunities for the stages of spouse training currently reached.
Exceptional circumstances may arise that warrant authorizing a pass when the preceding three criteria are not met. Those circumstances should, however, pertain to matters outside the domain of treatment, for example, urgent family business. Pressing requests for a pass from patient or spouse because someone is lonely or “the patient needs to get away from the hospital for awhile” should not be acceded to. If the pass means that much, it can be considered a reinforcer to be made contingent on some element of performance. A patient who has been progressing slowly in, for example, the increase of uninterrupted walking, may find extra incentive for those efforts by knowing one requirement for a pass may be to walk 1000 feet without pausing. Determined effort by a patient toward the first pass may even justify a slight increase in daily walking quota increments.
The planning of a pass should incorporate immediate treatment issues. The pass is a learning and rehearsal opportunity. What is to he rehearsed or learned should be thought through and provided for. The possibilities are endless. Some of the more common examples concern arranging that a particular activity occur, commensurate with currently attained exercise levels. A patient having difficulty riding more than 20 miles in a car may be ready for a 25-mile ride. That ride can become a prescribed part of the pass. A patient having difficulty sitting more than an hour may he ready for a 2-hour movie. A patient having difficulty standing at a sink or kitchen table to prepare a meal may be ready for a 30-minute stint at preparing each of the weekend dinners.
Each pass should be followed up by a session with the spouse from which to gain feedback as to whether performance assignments and constraints set for the pass were met.
Before departing on a pass, each patient should be checked to ensure that there is an adequate supply of pain cocktail for the length of the pass and that diary forms and other performance recording supplies are taken along.
The role of the spouse in the pass as part of the spouse retraining program and of the patient in regard to that program was considered in Chapter 12.
THE END OF TREATMENT: FINAL PHASE OF PROGRAMMED GENERALIZATION
The transition from intensive inpatient care to final termination of treatment should be as gradual and continuous as practically possible. The inpatient phase should be followed by a minimum of a week of outpatient care in which the patient remains committed to the treatment program virtually full time. He or she should spend most of each day at job stations or in exercise and other prescribed activities. A patient who lives at a distance can reside in a hotel or rooming house facility within easy commuting distance from the hospital during the outpatient phase. As noted previously, the spouse should be present for much and, if possible, all of that outpatient week. During that interval evenings are programmed, just as if they were evening passes from the hospital. Spouse retraining and feedback sessions continue, usually on an intensified basis, perhaps with daily sessions.
Patients living within commuting distance of the hospital may reside at home during the outpatient phase. The first week of that phase should have a nearly full-time treatment schedule; the patient comes daily and spends most of the day at the various treatment activities. That in turn means that the home schedule will have to be regulated such that the patient does not resume significant additional demands at home. For example, if the patient is the wife, during the first outpatient week the family should continue with whatever homemaking arrangements were made during the patient’s absence for inpatient treatment. Typically, the outpatient load can begin to diminish rapidly. As treatment time and load is reduced, it should be replaced by corresponding amounts of nontreatment activity. The fading pattern by which treatment time is reduced may take many forms. Often the easiest is for the patient to come 3 days the second week of outpatient treatment and 2 days the third. The third week may begin with a final outpatient recheck and, if no further intervention is indicated, treatment ends, except for periodic follow-up clinic rechecks.
Parallel with the fading of formal treatment, there should be a continuing concern with implementing access to posttreatment activities. Vocational training or placement efforts may be underway. An increasing range of social or recreational plans may be receiving repeated rehearsals. The demarcation between outpatient treatment and long-range follow-up is often arbitrary. Some patients may require indefinite periodic clinic visits to bolster the patient or spouse or to assess the maintenance of gains. Other patients may require protracted, although infrequent, clinic follow-up to help maintain momentum until long-range objectives become accessible, for example, until job retraining is completed or job placement succeeds.
Patients will sometimes experience flareups of the pain problem many months after treatment. These episodes may necessitate reinstituting elements of formal treatment. The clinical experience thus far accumulated indicates that these later episodes usually require but a few days of treatment. The patient returns for a brief inpatient period. Exercise quotas can be reinstituted. Increments usually can proceed at a much more rapid rate. Spouse training is reviewed and perhaps brushed up.
More often than not, these flare-up episodes relate to some failure of performance by others in the patient’s home or work setting. Job objectives failed to materialize. Leisure and recreational objectives did not prove to be as accessible as had been anticipated. The patient’s spouse had not maintained effective reinforcement of activity. The patient’s home physician, failing adequately to appreciate the importance of avoiding pain-contingent rest, medications, and special professional attention, had responded to pain behaviors (or some other illness episode) in ways that fostered a resumption of operant pain problems.
A review of the situation usually reveals the source of the renewal of operant pain. A few days of treatment are usually sufficient to reestablish treatment gains and to work through the problems and the remedies with the other people involved.
Commentary: Generalization and Maintenance of Performance
Chronic pain, by its very nature, extends over long-periods of time. In some instances, the presence of persistent pain can, in fact, be cured (e.g., replacement for an arthritic joint); however, in some of the most prevalent conditions there are no cures and at best treatments available are symptomatic providing some modest relief. Even with currently available treatments, typically the results indicate that pain is reduced by 30% to 40% in less than one-half of treated patients [11,31,32,45,47]. Consequently, people with chronic non-cancer pain may have to learn to live with at least some level of discomfort for years.
The presence of persistent pain will have a significant impact on physical, emotional, and interpersonal functioning. As a consequence people with these enduring conditions will have to accept responsibility of self-managing their symptoms and their lives despite physical discomfort. Some individuals are able to accomplish adjustments on their own and we know little about how they accomplish this. However a number of these individuals require assistance and many of the most recalcitrant problems require a structured interdisciplinary rehabilitation program, as recommended in numerous guidelines [e.g., 7,12].
Although rehabilitation programs include many different components there appears to be one common ingredient, an emphasis on the development of self-management skills whereby patients learn to adapt to their symptoms and importantly, to accommodate their lives. Although there is a large a growing literature on the effectiveness of pain rehabilitation programs, the results are relatively modest, when assessed at longer-term follow-up [23,26,36]. Even initially positive outcomes may dissipate over time, a concern in the treatment of all chronic diseases. There are several potential, and not mutually exclusive, explanations for the limited long-term benefits witnessed–(1) the treatments themselves are ineffective, (2) the benefits derived in the clinical context do not generalize, (3) patients may fail to continue to engage in prescribed behaviors, (4) the disease may progress, and (5) new problems may evolve and undermine treatment gains. The issues of generalization and maintenance—were acknowledged by Bill Fordyce in this classic volume and some of his insights related to these continue to be relevant although formulated over 40 years ago.
GENERALIZATION
Patient regression to pre-treatment admission levels might be attributable to insufficient transfer into the patient’s natural environment of the skills learned and behaviors acquired while actively participating in pain rehabilitation facility. Fordyce was prescient in acknowledging the important of generalization beyond the therapeutic milieu. He admonishes healthcare providers that “generalization should not be left to chance” [emphasis added] (p. 405) but should be viewed as an integral aspect of the rehabilitation program.
The issue of generalization became apparent to me when, early in my career, a patient who was completing the pain rehabilitation asked poignantly, “what do I do now? I live on a farm with no close neighbors, I have two small children and my husband is out in the fields 12 hours a day.” The rehabilitation program devoted a great deal of time helping patients acquire important skills to improve functioning but we gave little emphasis toward the transition from the hospital to the home. We should have read Fordyce more carefully. A long-standing concern has been the persistent of acquired, adaptive behaviors outside of the hospital setting [8]. What occurs during highly structured and rather artificial treatment programs does not necessarily “inoculate” the patients against subsequent problems that may arise when they leave treatment and return home.
Fordyce described the importance of providing patients in-hospital job assignments, evening practice, and homework tasks. He designed and incorporated specific tasks for patients that included responsibilities and activities that mimicked physical requirements that might be encountered by patients when they left the hospital. He also suggested incorporating time away from the clinic (week-end passes) with structured homework assignments throughout the rehabilitation process. In this way he attempted to extend the treatment to the environment that would be present in patients’ lives once treatment had terminated, as pain clinics and rehabilitation centers are not representative of natural environments. These clinical facilities provide safe environments with healthcare providers and resources readily available, time is structured and monitored, and others being treated with similar problems can provide some emotional support as well as modeling adaptive behaviors. This environment can be viewed in contrast with a person’s home that may be far removed from healthcare providers and supportive others, and in which there are many competing demands and responsibilities that have been largely relinquished during treatment. Significant others may attempt to be supportive and they may be empathic, but their efforts may be counter-productive [44].
Generalization is important to consolidate gains achieved. Once appropriate behaviors are acquired, they have to be practiced at some level, whether as part of a routine or in response to a particular circumstance which has arisen. This raises the issue of maintenance of treatment gains.
MAINTENANCE
Pain rehabilitation programs appear to be reasonably effective in teaching specific skills (e.g., relaxation, body mechanics, problem-solving) and changing beliefs and maladaptive thinking, but acquiring new behaviors and modes of thinking are much easier tasks than maintaining them. Inadequate amounts of time may be directed toward the factors that undermine maintenance as well as those that might even inhibit the production of those appropriate skills. Although there have been numerous efforts to engage family members as promoters of positive reinforcement [e.g.,10,30,42], the most effective methods are somewhat elusive.
Relapse following initially positive outcomes following treatment is a significant problem. Even relatively brief follow-up of successful intervention presents a troubling picture. All too often follow-up results reveal diminished initial perceptions of treatment efficacy by patients. For example, Bradley et al. [4] and Appelbaum et al. [1] showed impressive initial improvements in pain and physical function following treatment with dissipation of these effects at 6-month and 18-month follow-ups. Fordyce acknowledged this problem early in his thinking. He reported that in the first five years of his program [cited in 40], 60 of 100 patients “improved markedly.” However, with a 6- month follow-up at least one-third of the originally successful patients had relapsed. Follow-up data from rehabilitation suggest that from 30% to 70% of the patients relapse over a 1-year to 5-year period [29]. However, we must be cautious in interpreting these somewhat dismal figures. Often they are based on the self-reports of only a subset of treated patients, namely, those who are willing to participate in the follow-up assessment. Undoubtedly, there is some degree of response bias in these results because those patients who are most positive about the treatment they received also are more likely to be those patients who are doing better, are more willing to comply with follow-up requests and, therefore, may overestimate their improvements. Moreover, those most willing to respond to follow-up requests are also more likely to adhere to other therapeutic recommendations.
We should not be surprised that lack of maintenance of positive outcomes is a significant problem. Consider what the following have in common—New Years’ resolutions, weight loss programs, substance abuse treatments, smoking reduction protocols and rehabilitation programs. All require significant behavior change, commitment to self-management, motivation, effort, and persistence. Examination of the outcomes across areas reveals significant decay of effect curves. Are there some inherent characteristics (e.g., personality patterns, compensation status,) that predispose to relapse? Investigators have bemoaned the relapse statistics for many years and have tried to identify characteristics of those that relapse [5]. The research on individual characteristics has proven less than illuminating.
Beyond the individual focus, it is important to consider attributing the diminution of benefits to treatment characteristics. Brief programs (i.e., 3–8 weeks) give patients only a limited opportunity for patients to become proficient and incorporate new behaviors into their daily activities. The disease or symptoms, however, may have been present for longer periods. Patients who come to pain treatment programs often have long histories of inactivity, are physically deconditioned, and have feelings of helplessness and hopelessness, not to mention their frequent histories of dependence on the healthcare system to correct the underlying problem “causing” their pain. For example, the average durations of symptoms for patients treated at pain rehabilitation programs is in excess of 7 years [e.g., 20]. Although there may be an initial benefit of treatment, is it realistic to expect the positive outcomes that may palliate symptoms but do not offer cure to persist for years, if not decades?
Frankly, we have been quite naïve in our thinking but we continue to make the same errors. We tweaked the formulation (minor variations) of existing classes of drugs, surgical procedure, or content and format of rehabilitation, seeking optimal “doses” and expect substantially increased benefits over prior interventions. As an unintended consequence, patients are placed on a roller-coaster. Initial enthusiasm for a new treatment offered raises hopes, modest benefits leads to despair that the treatment has not been as effective as they had expected, followed by hopes for the next innovation will offer resolution or at least significant improvement in symptoms, and so the cycle repeats, with no end in sight. We rarely address maintenance systematically or in advance despite the careful attention given to maintenance by Fordyce early on in his conceptualization of rehabilitation.
Assuming some benefits are achieved, what is required for these benefits to be maintained? Once again, Fordyce was ahead of the field. He acknowledged the important of preparing for maintenance of benefits following the termination of formal treatment. It is foolish to assume that brief rehabilitative treatments that require long-term lifestyle changes (e.g., practicing relaxation, pacing exercises, using problem solving strategies) will be maintained unless the benefits are sufficiently (self-) reinforcing and used as regularly or at least as needed. During rehabilitation there is an emphasis on education with the assumption that patients are deficient in some particular skills and if these are acquired they will have a positive impact—so treatment attempts to remediate a putative skills deficiency. But knowing what to do and how to do it does not mean that the skills will be used. Failure to use skills acquired indicates a production deficiency. Failure to use appropriate behaviors. There seems to be an implicit assumption that the positive effects would be intrinsically reinforcing, although he never used this phrase. However, external reinforcement that may have been readily available in a structured rehabilitation program is less available in home environments. And patient self-motivation becomes essential.
Fordyce was a strong advocate of patients’ recording their performance on activity charts. Although not explicitly stated, such activity charts can not only provide information to therapists but provide positive reinforcement to patients for adaptive behaviors [9]. Patients are asked to record their goals and behaviors and can then use them observe their accomplishment, at least when in the right direction, and enhance performance, self-efficacy, and thereby motivation to continue self-management.
ADHERENCE
An implicit assumption is that to learn skills requires practice. Thus, a major assumption of rehabilitation is not only that patients acquire new set of skills and behaviors, but also that they practice and continue to engage in the behaviors after treatment. An implication is that chronic pain patients must adhere to treatment recommendations and practice self-management strategies in order to achieve long-term benefits. However, as I will note below, this assumes that the nature and frequency of practice (dose) and methods required to maintain the benefits are known.
Rates of nonadherence are troubling. On average the nonadherence rate for medication across diseases is 20.6% [16] and for chronic non-cancer pain approximately 30% [5]. Adherence to exercise and practice of coping skills is even lower. A significant proportion of patients report that they cease practicing learned skills and participating in regular exercise after treatment [18,28,33,43,46]. One study reporting rates of exercise by people with low back pain as less than 30% [22]. Dropout from rehabilitation is also high [17,18]. Nicholas et al. [38] assessed adherence in >500 chronic low back pain patients who completed a 3-week rehabilitation program and found that only 30% were regularly using all of the skills offered in the program. Not much has changed, Nicholas et al. results are only incrementally improved compared with the overall adherence rates with all recommended behaviors of 12.3% at 8 months follow-up reported by Lutz et al. [33] more than 30 years ago.
The statistics, which indicate that the incidence of nonadherence is high, may actually be underestimates because studies of adherence are often based on self-reports and as Hippocrates [27] noted patients tend to lie to avoid recriminations, embarrassment, or rejection by their practitioner by responding in a socially desirable manner. Table 1 lists the range of options that might be used to assess patient adherence.
Conceptually, “optimal” adherence is the rate below which the desired therapeutic result is unlikely to be achieved. The meaning of the concept of adherence, however, is quite variable and many factors have to be considered. How much adherence to recommendations is sufficient and adequate to produce the desired effects—100%, 80%? Is the rate of adherence necessarily the same for various stages of disease (acute, recurrent, chronic), type of treatment (pharmacological or nonpharmacological, complexity, as need [prn] vs. scheduled), purposes (prevention vs. remediation vs. cure; maintenance; symptom management; symptom magnification vs. palliation)? Rates of adherence to disease modifying agents (e.g., antibacterial and antiviral drugs) where patients need to take a very high percent to produce a cure will likely differ from rates of adherence for analgesic medication to alleviate symptoms. The extent of adherence to produce the desired outcome is particularly a problem for non-pharmacological treatments. For example, what is the “minimal effective dose” of relaxation practice, exercise performance, attention to maladaptive thoughts?
TABLE 1 Methods for Measuring Adherence
• Interview
• Self-report questionnaires
• Self-monitoring forms
• Pill counts of unused medication
• Electronic recording of vial opening
• Tallies of refills
• Biological marker (blood, urine test, energy expenditure)
• Marked-sign techniques (inactive or false medication embedded in medication)
• Records of attendance
• Observation of behavior (how they perform, blood glucose test, exercise)
• Physiological changes (6 minute walk, heart rate, muscle strength)
• Surrogate reports of behavior (family member reports)
• Clinical outcome improvement or stability in medical condition or symptoms (assumes effective treatment)
Related posts:
Full access? Get Clinical Tree
