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Background:
Chronic intractable non-malignant pain, including such functional disorders as irritable
bowel syndrome is now recognized as a significant problem in children and adolescents, with
potential long-term impact on the child's physical, social, and academic functioning, as
well as on the family as a whole. A recent study of more than 5000 Dutch school children
under 18 found that more than 25% reported suffering recurrent or continuous pain for more
than 3 months, with the prevalence increasing with age; and a survey of 735 German children
aged 10-18 using a modified version of the same instrument found the same for 45.5%. The
most common types of pain in these two studies were headache, abdominal pain, limb pain, and
back pain. This data would appear to confirm earlier estimates that recurrent headache,
including migraine, occurs in 11% to 26% of children ages 7-15; recurrent abdominal pain in
10-15% and recurrent limb pain in 4-18% in children ages 7-15. Many such children
apparently continue to function effectively, attending school and continuing normal
activities, with medical intervention only for acute episodes. A smaller, but significant,
number, however, find themselves unable to self-manage their pain. They become patients
with chronic pain and disability, falling into a cyclical pattern of pain, impaired
functioning in physical, school, social, and even family and self-care domains,
"doctor-seeking" and over-utilization of medications, and psychosocial distress, including
anxiety and depression.
Functional impairment, particularly in academic work and social participation, is likely to
have long-term effects on the individual's quality of life, even aside from the possibility
that pain and physical limitations may persist into adulthood. Several well-designed
studies using quantitative measures have provided evidence that impaired functioning in
children with chronic pain is strongly associated with psychosocial distress and with lower
quality of life. In particular, children with unexplained chronic pain, pain not associated
with an organic diagnosis, often report significant dysfunctions in normal activities, such
as schoolwork, sleep, family activities, and athletic activities. But, although impaired
functioning is a major factor in lower quality of life for children with chronic pain, we
still know relatively little about the prevalence and severity of functional impairment, why
some children experience more limitations than others, and which treatment interventions are
the most effective in improving function.
The available evidence also indicates that children show different levels of adjustment to
chronic pain over time. Chronic idiopathic musculoskeletal pain has been shown to persist
in 59% of cases for as long as nine years; in this study, the authors found the children to
have pain and disability levels comparable to children with juvenile chronic arthritis, but
lower levels of psychosocial functioning. Hunfeld, Perquin, and colleagues in Rotterdam
have traced the persistence of chronic benign pain in 30-45% of cases for up to two years
and three years, with no increase in intensity or frequency. In the latter study,
open-ended interviews elicited information about functioning and coping skills, and
identified continuing problems with physical activity, mental concentration, social
interaction, and psychological stress (becoming "moody"), particularly when the pain was
severe. The researchers found, however, that several children had developed their own
strategies to maximize functionality despite the continuing pain: "…pain had become part of
the daily lives of several adolescents, who structured their activities and sleeping hours
to prevent aggravation of pain". A recent cluster analysis of 117 children with chronic
pain divided them into three groups on the basis of a set of psychosocial and behavioral
measures: those who were highly distressed and disabled; those who showed low levels of
distress and disability; and those who showed only moderate levels of distress and
disability, but whose family environment scored low on cohesion.
Although several factors may account for children's differential ability to function and to
adjust to persistent chronic pain, the child's sense of self-competence has been identified
as a key variable in recent literature. Claar and colleagues, for example, found that in
adolescents and young adults with irritable bowel syndrome, the relationship between pain
and functional disability was moderated by the individual's sense of academic, social, and
athletic competence. The concept of self-competence (a general sense of mastery) overlaps
with that of self-efficacy (a task-specific sense of mastery), developed by Albert Bandura
in the late 1970s and early 1980s 18. The concept of self-efficacy suggests an explanation
for the relationship between coping skills, perceived ability to cope, and reduction in
physical and psychological disability. Bandura argued that a sense of self-efficacy enables
the individual to persist even with a task of great difficulty until it is mastered, to
reject negative thoughts and to "bring cognitive or cerebral productions into being" that
will assist in achieving the goal.
To summarize briefly, impaired functioning in all domains is a major and potentially a
long-term problem for children with recurrent or chronic pain and their families, which are
a significant segment of the American population. Children show significant variations in
their ability to cope with pain and continue to function, and some children learn better
functioning over time. The child's own sense of self-competence, or task-specific
self-efficacy, is one important factor which may reinforce or moderate the child's
functioning. Functional disability is clearly associated with psychosocial distress. But
these factors are also mutually reinforcing; while children with more psychosocial distress
may have more problems functioning with pain, certainly children who experience pain and
attendant functional problems are likely to react with anxiety and/or depression.
Current Therapeutic Interventions: When chronic pain can not be fully alleviated, the
optimal goal is for the patient to learn effective ways to continue functioning and to
self-manage pain; several therapeutic programs have been developed, based on theories of
health behavior change, to assist the patient in this process. The earliest of these, the
operant learning model developed by Wilbert Fordyce and colleagues in the late 1970s,
demonstrated that individuals could be induced to alter their behavior - specifically, to
engage in active exercise and limit dependence on medication - in response to social and
other forms of positive reinforcement. Fordyce's program proved helpful to many patients,
but was criticized for its determinist emphasis on observable behavior and disregard of the
fact that patients are "active information processors", and that their behavior is not
merely a response to learned cues but shaped by cognitive processes, such as expectations of
increasing pain or anxieties about physiological harm.
The revised therapeutic programs that developed in response to these criticisms drew on
overlapping models linking health beliefs to health behavior and to self-efficacy as
described by Bandura. These new models rely on an expectancy-value theory of behavior; that
behavioral change is not a simple learned response to reinforcement, but that learning is
influenced by the individual's cognitive belief (expectancy) that s/he will be able to
change functioning with positive consequences (self-efficacy) and by his/her expectations
(values) of the potential benefits of and barriers to behavioral change. Thus the new
therapeutic programs, the most well-known and widely practiced of which is
cognitive-behavioral therapy (CBT), seek to mediate behavioral change through cognitive
relearning. The cognitive behavioral therapist uses a number of methods -- including
education about pain, verbal reinforcement for positive cognitions and actions, biofeedback,
group therapy allowing patients to observe and learn from each other, and teaching of
cognitive tools to repress negative thoughts -- to help the patient develop positive
expectations of behavior change, minimize negative expectations, and internalize the
conviction of his/her own ability to overcome barriers and effectively self-manage pain In
effect, the patient becomes the agent of change.
CBT has been shown to be effective in controlled trials of treatment pain in cancer
patients; of chronic low-back pain; of osteoarthritic knee pain; of sickle cell disease; of
pediatric migraine; and of recurrent abdominal pain in children. CBT with family
involvement has been found to be an effective intervention for adolescents with chronic pain
and chronic fatigue 31-33. Flor, Fydrich, and Turk's 1992 analysis of 65 studies of
multidisciplinary treatments for chronic low back pain in adults, covering a number of
variants of cognitive, behavioral, and coping skills training packages, noted that many of
the studies were "marginal" in quality, but nevertheless demonstrated that these methods
were superior to no treatment and to single-modality treatment -- medical or physical
therapy -- in decreasing pain and impairment, improving mood, promoting return to work, and
decreasing health services utilization. "Even at follow up, patients...are functioning
better than 75%" of control groups; the findings of efficacy are "quite impressive". A
recent systematic review of behavioral treatment for low back pain again found only six
studies "of high quality". The authors nevertheless thought the evidence strong that
behavioral therapy had at least "a moderate positive effect" on pain intensity and "small
positive effects" on functional status; but they noted that "it is still unknown what type
of patients benefit most" from behavioral therapies.
A well-designed intervention, it appears, is not enough: not all patients will benefit from
CBT. As Dennis Turk, the leading exponent of CBT, has stated, patient motivation is at
least one of the critical factors in successful outcomes of this therapeutic model. Jensen
and colleagues have recently proposed a cogent general model that integrates the varied
theoretical approaches to describe a dynamic process that pivots on this concept of
motivation, or readiness to change. An individual's readiness to change, they argue, is
essential to his/her ability to learn successful pain self-management through new behaviors;
and readiness is a dynamic function of 1) his/her perceived importance of the change
(beliefs of the costs and benefits of change, past experience with change (learning
history), and current contingencies (availability of social and material support) and 2)
his/her self-efficacy beliefs (personal experience, modeling provided by others, verbal
persuasion, and perceived barriers). They suggest some clinical approaches for enhancing
readiness and promoting change, including encouragement to practice self-management;
allowing the patient to observe other pain patients practice self-management; support of
positive beliefs and non-judgmental non-support of negative beliefs; and development of a
plan to address real or perceived barriers; and they call for research into interventions
along these lines to enhance motivation.
Another formulation recently proposed by Sharp stresses the patient's cognitive activity in
appraising and evaluating his or her pain, and its ongoing and interactive effects on mood,
behavior, and somatic focus. The patient's initial response to the pain is a function of
cultural beliefs, learning history, and current contingencies, he argues, but then is
continually reinterpreted with ongoing events. In particular, anxiety about recurrent pain
and avoidance of activity that might cause pain will help to perpetuate the patient's
hypervigilance for signs of recurring pain (as described by Eccleston and Crombez) and
his/her perceived inability to manage the pain. Moreover, Sharp contends that this attitude
of "learned helplessness" may be perpetuated by physicians who have failed to offer helpful
treatment or even to confirm the physical reality of the patient's suffering. "That is,
patients could start to believe that 'nothing has worked so far so why would any future
treatment help?" A patient who has reached this point is likely to have a negative
assessment both of the benefits of pain self-management and of his/her own ability or
self-efficacy to learn these skills, and will therefore show a lack of readiness to change.
In this study, we will consider adolescent pain patients and whether a new type of
innovation can promote their readiness to change and to learn pain self-management skills,
that will promote positive outcomes in pain reduction and improved functioning.
Findings from our Current Research: Our interdisciplinary group, comprised of researchers
from anthropology, history, pediatrics, psychology, and sociology, has collected
quantitative and interview data on 74 adolescent children presenting between 2003 and 2006
to the Pediatric Pain, Pediatric Gastroenterology, and Pediatric Neurology Clinics with
recurrent or persistent pain. We have completed preliminary analysis of the qualitative
data for a subset of 37 (28 girls and 9 boys, average age 13.97) for whom intake and
six-month follow-up data was obtained. These children reported suffering pain for periods
ranging from one month to "all my life": the average computed duration was 53.6 months, or
about 4.5 years. All of them had seen at least one physician prior to referral to UCLA and
the majority had seen three or more.
The children's levels of functioning varied considerably on the quantitative measures, but
the evidence from the long, semi-structured interviews (conducted prior to the first Clinic
appointment and at 6 months) shows that virtually all were distressed by some level of
impairment. Those who had had pain for several years reported that pain had become part of
daily life and that they adjusted their lives around it: Many of the children also stated
that their unexplained chronic pain, which a series of doctors had not been able to
diagnose, had given them a sense of isolation and difference from others, and a sense of
powerlessness, that contributed to their distress:
Those children seen in the Pediatric Pain Clinic (28, or 76% of the 37) were given
recommendations to choose one or more of a list of complementary and alternative medicine
(CAM) providers who work with the clinic; these include several who teach pain
self-management skills, including a physical therapist, yoga therapist, biofeedback trainer,
and guided imagery/hypnotherapist. These recommendations were made in addition to those for
tests, changes in medication or other therapies. Children seen in the GI or Neuro Clinic
might be given a recommendation for PT or another CAM treatment, but it was not a
standardized part of the treatment plan. At the follow-up interview, the children were
asked whether their pain and functioning had improved, and also to talk about their
participation in any of the CAM therapies:
Better, pain improved or resolved by medication change - 8; 22%
Better, participation in active CAM had helped - 8; 22%
Better, medication change and participation in an active CAM therapy - 4; 11%
Same, meds had not helped, no interest in CAM - 6; 16%
Same, meds had not helped, CAM not tried because not recommended or because of reimbursement
issues - 5; 13%
Same, meds had not helped, child tried CAM but did not persist - 2; 6%
Worse, meds had not helped, no interest in CAM - 1; 3%
Worse, meds had not helped, CAM too expensive - 1; 3%
Worse, meds had not helped, child tried CAM but did not persist - 1; 3%
Worse for other reasons (intervening surgery had increased pain) - 1; 3%
These findings are not presented as supportive evidence of the benefits of CAM therapy.
Rather, they indicate, that, in this group of children, aside from a small group helped by a
medication change and one outlier case, those who were self-motivated to participate in a
therapy that taught them active self-management consistently reported better outcomes than
those who were not self-motivated or who were unable to do so.
Why did 16 of the children choose not to participate or persist in participating in
recommended CAM therapy? One possible explanation is that they lacked confidence that a new
therapy will work when many others have failed to work and believed that their pain was a
different and intractable problem that doctors did not know how to treat and that they could
not manage themselves. Another is that they were not given the opportunity to observe
others; were not given sufficient reinforcement from family or other significant contacts
for participation; and were not helped to overcome any perceived barriers to access.
On the basis of this preliminary data, considered in the light of current theoretical
models, we propose the following hypotheses:
- Adolescents who participate actively in learning a pain-management skill will show more
improvement in pain and functioning at 2 and 4 months than those who do not.
- Adolescents who lack peer support for learning a pain management skill will not follow
through with learning such a skill without further reinforcement, even if recommended
as part of a treatment plan.
- Adolescents may be helped to adhere to treatments that involve learning a pain
management skill which will improve their pain and functioning by talking to others who
have learned such a skill; by receiving ongoing positive reinforcement; and by being
helped to overcome perceived barriers.
We propose to test our hypotheses through a trial of a peer mentorship intervention, using
trained adolescents who have successfully learned pain management skills as mentors. The
mentor will help to relieve the child's sense of isolation and difference by relating their
similar experiences, provide models of successful skill learning and reinforce the mentored
subject's participation in skill learning activities.
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