Peer Mentorship: An Intervention To Promote Effective Pain Self-Management In Adolescents
Peer Mentorship: An Intervention To Promote Effective Pain Self-Management In Adolescents
This protocol matches child subjects with peer mentors of similar age who have learned to
 function successfully with a chronic pain disorder. The trained mentors will present
 information to the subjects in a supervised and monitored interaction via telephone and
 computer for 2 months and encourage participation in skill-building programs. Children will
 be tested for improvement in pain and functioning at 2 months and again at 4 months to see if
 improvements persist. The investigators hypothesize that children who received peer mentor
 support will show more improvement in pain and functioning at 2 and 4 months into treatment
 than those in a control group who do not receive mentor support.
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.
Mentors

 Inclusion criteria:

 -  between the ages of 14 and 18

 -  any patient who has been successfully treated in the UCLA Pediatric Pain Program

 -  access to telephone

 -  access to internet enabled computer

 Exclusion criteria

 -  younger than 14

 -  older than 18

 -  new patient

 -  no access to telephone

 -  no access to internet enabled computer

 Mentees and controls:

 Inclusion Criteria:

 -  chronic pain diagnosis

 -  between the ages of 12 and 17

 -  access to telephone

 -  access to internet enabled computer

 -  new to UCLA Pediatric Pain Clinic

 -  plans to utilize program CAM therapies

 Exclusion Criteria:

 -  already utilizing UCLA Pediatric Pain Program CAM therapies

 -  unable to read, speak, or understand english

 -  younger than 12 or older than 17

 -  no access to telephone

 -  no access to internet enabled computer

 -  not new patient to UCLA Pediatric Pain Clinic

 -  does not plan to utilize program CAM therapies