In 1986 the International Association for the Study of Pain (IASP) formulated the following definition of pain: ‘Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage. Note: pain is always subjective. Each individual learns the application of the word through experiences related to injury in early life’. Most child studies define chronic pain as pain that persists continuously or intermittently for at least three months [1
]. In the general population approximately 25% of children and adolescents (0–18
years) suffer from chronic pain [4
]. Limb pain, headache, and abdominal pain are the most reported types of pain. A prevalent combination is headache plus abdominal pain [7
]. The prevalence of chronic pain is the highest in girls aged 12 to 14
]. In 30% of the children and adolescents pain seems to persist after two years [5
]. Additionally, 59% of the women and 39% of the men who reported pain in childhood also reported pain in early adulthood [8
Chronic pain negatively influences the quality of life of adolescents [9
]. Children and adolescents with pain are often unable to meet friends and to pursue hobbies [7
]. Additionally, they may report disturbed sleep, loss of appetite, frequent use of medication, subclinical depression, and school absence. School absenteeism is also burdensome for parents, who often have to take days off from work [10
]. Chronic pain also significantly impacts on the health care system [11
]. Approximately 43% of children and adolescents with chronic pain utilize health care and 53% use pain medication at least once every three months. The frequency of health care use is positively related to age, pain intensity, and pain duration [6
Some studies suggest that parents influence the way children and adolescents experience pain. Pain seems to be less intense when parents distract their child from pain, while pain appears to be worse when parents focus on the child’s pain [12
]. Additionally, parents of children and adolescents with chronic pain often have chronic pain themselves [13
]. Pain in adolescents also seems to be predicted by depressive symptoms, somatic complaints (other than pain), reduced leisure time activities, number of friends, and recent parental divorce [14
]. Additionally, chronic pain in adolescents is related to coping [15
]. Adolescents with an avoidant coping style and adolescents with a dependent coping style, report the most disabled functioning. They have higher levels of depression and anxiety than other adolescents with chronic pain.
In summary, chronic pain in adolescents is influenced by many factors. This is in accordance with the biopsychosocial model [16
], which states that pain is caused by a complex interaction between biological (e.g., genetics), psychological (e.g., attention), and social variables (e.g., role models). Differences in the interaction between these variables may explain differences in pain expression between pain patients. For this reason, different types of treatment, i.e. medical and psychological, might be useful for adolescents with chronic pain.
Signaling and referral
To optimally treat adolescents with chronic pain it is important to signal pain complaints at an early stage. The Pain Questionnaire was the first instrument that was developed for indexing pain and pain parameters in children and adolescents, irrespective of pain localization [4
]. The questionnaire consists of questions about the experience, location, frequency, duration, and intensity of pain. The Pain Questionnaire was designed for usage in the general population but is not considered suitable as a signaling instrument as it does not allow for the impact of pain. This means that currently chronic pain is not taken into account in the regular signaling and registration practice of the Preventive Youth Health Care in the Netherlands. To signal chronic pain in the general population a short signaling questionnaire should be developed. Additionally, a referral protocol is needed to offer the most tailored treatment to adolescents with chronic pain.
A systematic review of randomized controlled trials (RCTs) has shown that cognitive-behavioral therapy (CBT) and relaxation exercises are effective in reducing pain frequency and pain intensity in children and adolescents [17
]. CBT may be effective in providing strategies that help adolescents to cope with their pain. As a result, pain-related symptoms of anxiety and depression may also be reduced and quality of life may improve. However, only few studies have examined if psychological treatment also enhances adolescents’ well-being [18
]. The results of a study by Trautmann and colleagues [18
] showed that their self-help training program improved pain catastrophizing, but not depression and quality of life.
More studies on the effect of psychological treatment on coping and well-being are needed. Unfortunately, inclusion is often problematic in face-to-face cognitive behavioral therapy [19
]. Adolescents have difficulty combining vis-à-vis therapy sessions with homework and activities with friends. Additionally, youngsters with bodily symptoms are often reluctant to consult a psychologist. Psychological interventions using an Internet format could therefore be more attractive to adolescents. Advantages of internet therapy are that it is available for all geographical districts and adolescents can work through the program at any place and any time.
Stinson and colleagues concluded in their review that Internet-based self-management interventions seems to improve health outcomes in children and adolescents with various health conditions, including pain [20
]. In 2005, Hicks and colleagues tested the efficacy of an Internet-supported treatment for adolescents with chronic pain in the general population [19
]. One month after treatment the adolescents in the experimental group experienced significantly reduced pain compared to adolescents in the waiting list group. More recently, Palermo and colleagues (2009) evaluated an Internet-delivered family CBT intervention [21
]. Results showed that pain-related disability and pain intensity were reduced more in the Internet group than in the waiting list group. These effects were maintained at three months follow-up. In summary, these findings suggest that Internet interventions may be a promising alternative to face-to-face therapy in teenagers with chronic pain.
In the current manuscript we describe the study protocols of two related studies: a referral study and an intervention study. The main aim of these studies is to improve signaling, referral, and treatment of adolescents with chronic pain. By collaborating with various (mental) health-care institutions, a health-care pathway can be created, through which adolescents can receive the best tailored treatment. Firstly, a signaling instrument for chronic pain was developed. The instrument includes a referral protocol for implementation in the preventive health examinations of the Public Health Services Rotterdam. Secondly, a guided self-help intervention via the Internet was developed for adolescents with chronic pain. The intervention includes cognitive behavioural techniques and relaxation exercises and is one of the referral options in the referral protocol. The primary objective of this intervention is to improve the way adolescents cope with pain.
Our main research questions are: 1. What is the feasibility of the signaling instrument and the accompanying referral protocol in the context of Preventive Youth Health Care? 2. What is the efficacy of the guided self-help intervention via the Internet?