Chronic intractable non-malignant pain, including such functional disorders as recurrent abdominal pain (RAP) and chronic daily headache, 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. Estimates of children experiencing recurrent or continuous pain range from 25% - 45.5%, with the most common types of pain reported as headaches, abdominal pain, limb pain, and back pain [1
]. 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 [3
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 [4
] and with lower quality of life [4
]. In particular, children with unexplained
chronic pain - pain not associated with an identified organic diagnosis - often report significant dysfunction in normal activities, such as schoolwork, sleep, family activities, and athletic activities [10
]. 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 [11
Current Therapeutic Interventions
When chronic pain cannot be fully alleviated, the optimal goal is for the adolescent is 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 [12
]. The newer therapeutic programs, the most well-known and widely practiced of which is cognitive-behavioral therapy (CBT), seek to mediate behavioral change through cognitive relearning. CBT employs a number of methods - including psychoeducation about the nature of pain responses, identification and modification of maladaptive cognitions, and encouraging behavioral changes to reduce or eliminate avoidance of activities [13
]. Numerous controlled trials have shown CBT to be effective for a variety of types of pain, including in the child and adolescent populations [14
In addition to psychotherapy, other types of complementary and alternative medicine (CAM) practices have shown varying levels of efficacy for chronic pain. These include interventions such as Iyengar yoga for rheumatoid arthritis [20
], and acupuncture for low back pain [21
]. In a 2005 review of studies examining CAM treatments for chronic pain conditions in children, Tsao and Zeltzer [22
] found hypnosis and guided imagery to be "efficacious" for recurrent pediatric headaches, and found acupuncture, biofeedback, creative arts, herbal therapy, homeopathy, and massage therapy to be either "promising" or "possibly efficacious" for a wide variety of pediatric chronic pain conditions. Furthermore, the authors found multiple modalities packaged together to be more efficacious.
A well-designed intervention, however, is not enough. Patient motivation
is at least one of the critical factors in successful outcomes of this therapeutic model [14
]. 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. 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 [12
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 [23
]. 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 [24
]) 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?" [23
] 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.
While current interventions such as those mentioned above are known to be effective, adherence to recommended treatments in children with chronic health conditions is typically low [25
]. Simons et al. [19
] report only a 46.7% rate of "full adherence" (defined as completing the full recommended course of treatment or currently receiving the treatment) to a referral of cognitive-behavioral therapy for children with chronic pain, lower than adherence rates for other treatment modalities (i.e., medical and physical therapy referrals). The authors also assessed barriers to treatment among non-adherents and found that negative attitudes and beliefs regarding the recommended intervention to be the most frequently cited reason for not completing the recommended treatment. This finding suggests that determining methods to improve adherence to recommended treatments is a necessary step to improving pain and functioning in this population.
Strategies for Adolescents: Peer Mentoring
Innovative strategies to promote pain self-management in adolescents
with chronic pain may be especially needed, as this age group has shown great variance in motivation and adherence in studies of CBT-based therapies for other chronic health conditions. In fact, children of all ages demonstrate low rates of adherence to recommended treatments for chronic health conditions, ranging from 11% to 50% [25
]. However, some researchers have reported that motivation and adherence can be enhanced if young people have the opportunity to interact with peers who model and reinforce adherent behaviors, and Varni et al. have argued convincingly for "the power of peer relationships and social supports in mediating adjustment to chronic malfunctions" [25
Peer mentors most often work in programs designed to encourage desired social and preventive health behaviors, such as nutrition and tobacco abstinence [27
], non-violence [28
], sexual abstinence [29
], or HIV prevention [30
] in physically healthy children. In a low-income area of Chicago, for example, 19 self-selected adolescents aged 14-21 designed and presented violence-prevention lessons to 50 younger children (7-13) over an 18-month period. Post-intervention, the mentored children showed lower acceptance of violence after the intervention than a control group of 75 children [28
]; 11 of the adolescents continued with the program and 3 entered college or employment. Peer mentorship has only been explored in a few instances within medical treatment programs. In a youth-run program in San Francisco, peer-mentor-advocates have effectively empowered young people infected with HIV (ages 26 and younger) to access needed services and to learn coping skills for living with the disease [31
]. Peer support has also been the subject of several studies of adolescents with diabetes, where researchers have found that the support of friend-peers is a critical resource for diabetic teens, providing important social and emotional support, and that structured peer-group interactions may
improve adherence to glucose self-monitoring and control [32
]. Greco and colleagues reported a successful education and support group intervention with 21 diabetic adolescents (ages 10-18) and their best friends (4 sessions); both the patients and their friends demonstrated higher levels of knowledge about the disease and its care, and the patients reported a higher ratio of peer-to-family support [33
]. Clemente has used ethnographic methods to document the informal peer-mentoring provided to children newly admitted to cancer treatment wards by peers who had been through several treatment cycles [35
]. We contend that trained peer mentors, who have successfully learned pain self-management skills, are an effective and feasible choice to promote pain self-management in the adolescent chronic pain population because this intervention has the potential to relieve the sense of isolation, difference, and helplessness reported by the adolescents.
In this exploratory pilot study, we will finalize development of an innovative, manualized peer-mentorship program designed to provide modeling and reinforcement by peers to other adolescents with chronic pain (the "mentored participants"). The goal of the mentorship will be to encourage the mentored participants to engage in therapies that promote the learning of pain self-management skills and to support the mentored participants' practice of these learned skills during a two-month intervention period. The study will examine the feasibility of this intervention for both mentors and mentored participants, and, through a randomized, controlled design, will assess the preliminary effectiveness of this program for both short and longer term effects on mentored participants' pain and functional disability.
1. To test the feasibility and acceptability of a peer-mentorship intervention in supporting and encouraging adolescents with chronic pain and pain-related functional disability (the "mentored participants") to participate and persist in an active skills-building therapy that teaches pain self-management skills.
2. To test the feasibility of training adolescents who have coped successfully with chronic pain (the "mentors") to offer support and reinforcement to their peers in a structured peer-mentorship intervention, based on a manualized protocol developed within a social learning model grounded in CBT principles.
3. To determine if the mentored participants with chronic pain show improved adherence to recommended skills-building therapies, compared to a usual care control group of adolescents with chronic pain immediately after the two-month peer-mentorship intervention and at two-month follow-up (four months from baseline).
4. To determine if the mentored participants with chronic pain show improvements in pain levels and pain-related disability, compared to a usual care control group of adolescents with chronic pain immediately after the two-month peer-mentorship intervention and at two-month follow-up.
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 mentors will help to relieve the adolescents' sense of isolation and difference by relating their similar experiences, provide models of successful skill learning and reinforce the mentored participants' participation in skill learning activities. We propose the following hypotheses:
1. Adolescents receiving the peer mentorship intervention will report better adherence to recommended therapies, as compared to adolescents who do not receive the intervention.
2. Adolescents with better adherence to recommended therapies will show more improvement in pain and pain-related disability 2 and 4 months after baseline than those with poor adherence.
3. Adolescents receiving the peer mentorship intervention will report decreased symptoms of anxiety and depression and improved pain coping skills, as compared to adolescents who do not receive the intervention.