Download - Chronic pain in children and adolescents
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Chronic pain in children and adolescents
Christopher Eccleston PhD,
Professor of Psychology, and Director of the Pain Management Unit,
The University of Bath & The Royal National Hospital for Rheumatic Diseases NHS
Foundation Trust.
Contact: Pain Management Unit, Level 7, Wessex House, The University of Bath, Bath, BA2
7AY. Tel: 01225 386439, email: [email protected]
Elizabeth Bruce1 RGN, RSCN, MSc,
Clinical Nurse Specialist, Pain Control Service
Great Ormond Street Hospital for Children
London WC1N 3JH
Tel: 020 7813 8343 [email protected]
Bernie Carter2 PhD, BSc, RSCN, SRN
Professor of Children’s Nursing, Dept of Nursing
University of Central Lancashire
Preston, PR1 2HE
Tel: 01772 893720 [email protected]
1 Outgoing Chair of the RCN Pain in Children Group
2 Chair of the RCN Pain in Children Group
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Abstract
Chronic pain is a widespread and significant clinical problem. It can result in major negative
short and long-term physical and emotional effects in multiple domains of the child’s and
their family’s lives as Pain Associated Disability Syndrome. Assessment of chronic pain is
challenging but it is an essential clinical task. Management requires a multidimensional
response with the focus being on the whole patient. Specialist pain management units and
programmes use cognitive behavioural methods and promote adaptive coping and focus on
the child re-engaging with normal activities. Whilst chronic pain is not well understood,
there is emerging evidence that young people and their parents can recover from chronic
disability, dependency and distress, and return to a normal life.
Chronic pain in children and adolescents
Introduction
Chronic pain, defined as persistent or recurrent pain that persists “beyond the time of
healing or pain which is persistent or near constant for three months or longer” (McGrath
and Finley 1999), is slowly being recognized as a significant clinical problem (Eccleston and
Malleson 2003). Although acute pain is a common feature of childhood, providing an
essential method of learning about danger, chronic pain can become a disabling,
distressing, and dysfunctional feature of childhood and family life. In this brief article we
present data on how many children have chronic disabling pain, its consequences, and what
can be done about it.
How many children have disabling chronic pain?
Pain from bumps and bruises is an everyday childhood experience and not normally a cause
for significant concern (for example: Fearon 1996). However, we are also learning that
chronic pain is relatively common although largely hidden. Recent large school-based
epidemiological studies have revealed the extent of chronic pain experienced by children
and adolescents to fall within a range of 15-30% (for example: Perquin et al 2000, 2003).
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The most common chronic pain is headache, followed by abdominal pain and
musculoskeletal pain. Chronic pain is not specific to one age group or gender, but the
prevalence peaks at 14 years of age and is more commonly reported by girls.
Many children experience one or more episodes of chronic pain during childhood, the
majority of which are not disabling or distressing in the long term. However, it is becoming
clear from recent studies that there is a sub-population of children with chronic pain whose
lives are severely affected and/or who are extensively disabled by severe chronic pain (see
Merlijn et al 2005). Roth-Isigkeit et al (2005) explored in depth the primary problems of
childhood chronic pain, focussing on its consequences. They found, in a sample of 751
schoolchildren, that 622 (83%) reported an episode of prolonged pain in the previous 3
months. In this sample as many as 35.2% suffered severe pain at least once a week, with
5.5% recording it as occurring everyday. Taking the recent epidemiological studies
together, we would make a conservative estimate of the prevalence of children and
adolescents with severe and disabling chronic pain to be at 1-3% of the general population.
These young people and their parents quite naturally become concerned and are seen in a
variety of clinical settings, looking to make sense of their experience and searching for
effective treatments. By the time these children attend a paediatric chronic pain clinic
they have often visited a number of specialists in search of a diagnosis or reason for the
pain. Chronic benign pain, where there is no obvious physiological cause for the child’s
pain, is poorly understood and the child may be labelled as attention seeking, or told that
the problem is “all in their head”. The lack of a diagnosis or satisfactory explanation for
the pain causes considerable anxiety for the family and increasing distrust in health
professionals (Carter 2004).
The impact of chronic pain
Chronic pain can have widespread negative consequences in all aspects of life (Palermo
2000) for the child with pain as well as their family (Hunfield et al 2001, 2002). These
consequences can be both short-term and long-term and can reach well into adult life.
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Bursch et al (1998) described this toxic effect of chronic pain spreading and spiralling to
multiple domains of life as Pain Associated Disability Syndrome (PADS) (see Figure 1) (see
also Zeltzer et al 2005), including, we have recently learned, the financial domain (Sleed et
al, 2005). Young people with chronic pain report sleep disturbances and changes in
appetite, general fitness and mood, and a significantly reduced ability to be involved in
normal childhood activities, including school and play (Konijnenberg et al 2005, Roth-
Isigkeit et al 2005, Palermo and Kiska 2005). In addition, greater emotional distress is
common, including depression (Kashikar Zuck et al 2001) and increased symptoms of pain
related anxiety (Merlijn et al 2003). Family functioning and the adolescent’s development
can also be affected (Eccelston et al 2005). In one innovative qualitative study Carter
(2002) allowed young people to give voice to their own concerns. She found that, given the
opportunity to talk, young people were expressive about the extent to which living with
chronic pain was a constant personal and private challenge. Not present in the quantitative
literature, but exposed in this study, was the extent to which young people feared for their
future. Chronic pain affects not only the young person but also those around them. In
particular, parents report increased feelings of helplessness and despair, and can suffer
mental health problems associated with parenting an adolescent with chronic pain
(Eccleston et al).
Assessing chronic pain
Whilst acute pain creates its own challenges for effective assessment, chronic pain creates
particular difficulties. This is because “chronic pain, in contrast to acute pain, rarely is
accompanied by signs of sympathetic nervous system arousal. The lack of objective signs
may prompt the inexperienced clinician to say the patient does not “look” like he or she is
in pain” (American Pain Society, 1999 p4). Yet despite these difficulties, assessment of
chronic pain is an “essential clinical task” that requires assessment of both the pain itself
and the myriad effects it has on the child and family (Eccleston et al 2005). Formal
methods for assessing the impact of chronic pain have been used, but mostly these rely on
measures not designed for chronic pain patients (for a review see Eccleston et al in press).
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However, more recently methods have been developed that focus on an assessment of the
multidimensional quality of chronic pain (e.g., Eccleston et al in press, Palermo et al 2004,
Weel et al 2005). In addition to formal methods, nurses can adopt a narrative approach in
their care of children and this can help to elicit the child’s stories or perspective on their
pain (Carter 2002). When assessing pain, nurses should be aware of the multiple influences
that can affect the process. It is not unusual for chronic pain patients to display what can
seem at first to be inappropriate pain behaviours. Typically these are a flat or positive
affect in response to pain, or an exaggerated response to light touch. These are best
understood not as a sign of an unusual personality, but instead as learned behaviours that
are driven largely by emotional factors, typically anxiety. Young people with chronic pain
have a history of failed medical interventions that weigh heavily on each new attempt to
help. These can result in ‘referral fatigue’, where each new referral brings both the hope
of help but a sense that failure may be inevitable (Carter 2002). Similarly, parents can
sometimes appear to be over-protective, uncooperative and sometimes aggressive. Again, it
is important to understand these interactions in the emotional context of an often fragilely
masked depression and fear for the future (Eccleston 2005).
Managing chronic pain
In the absence of a cure for persistent pain and the presence of pain related disability,
distress and family disruption, a multidimensional response with a focus on the whole
patient is required. In a recent Cochrane systematic review Eccleston and colleagues
(2003b) identified 18 randomised controlled studies that had used psychosocial treatment
methods for the management of chronic pain. Perhaps the most important finding from this
comprehensive review was that nurse-led psychosocial interventions in a school setting are
highly effective in helping children manage chronic headache and its consequences. In
particular, nurse-led relaxation training proved to be very effective. More recently, Fitchel
and Larsson (2004) have replicated these findings and stressed the importance of adequate
training (see also Larsson et al 2005). The effects were only present where nurses had
undergone specific training in psychological based relaxation techniques. Early management
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of recurrent pain in home and school settings can be highly effective and could prevent the
onset of the complex chronic presentation.
Since 2000 the Bath Pain Management Unit (www.bath.ac.uk/pain-management/) has
offered a residential programme of pain management based on cognitive behavioural
principles. This is a residential service offered nationwide. Young people and one adult
carer (typically a parent) stay in residential accommodation and attend daily a programme
of rehabilitation aimed at acceptance of chronic pain, a reduction in pain related distress,
and an improvement in coping skills. Much of the focus of this programme is on promoting
adaptive coping in parents. Patients referred to this service are highly disabled, with an
average chronicity of pain of 4 years. A multidisciplinary team work with parents and
patients in groups (Eccleston et al in press). Outcome data from this innovative
rehabilitation approach have been promising. Parents report early major improvements in
coping skills, stress, depression, and confidence in their ability to promote normal activity.
At three months following the programme the young people report less anxiety, pain, and
depression. They have maintained their improvements in physical function and have
returned to normal activities (Eccleston et al 2003a). Perhaps most importantly, there was
a significant improvement in school attendance at 3 months. Before treatment the young
people had an average school attendance of only 3 half day sessions a week. After
treatment the average had doubled to 6 half day sessions a week. Before treatment, only
25% of the sample was in full time education. At follow up this had risen to 52%. The focus
of this therapy is on returning to normal activity in spite of pain.
Future directions
Many children have pain that is disabling, pain that stops them from engaging in normal
childhood activity. If we can accept this we have a chance of making a difference. There
are a number of simple strategies that we can adopt.
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Recognise that persistent or recurrent pain is not unusual or uncommon, and
normalize it.
Use a standard measurement tool for assessing the level and severity of pain
experienced by children (See http://pediatric-pain.ca/index.html for online
resources for measures and protocols)
There is strong evidence for the effectiveness of nurse delivered psychological
therapy, especially relaxation training, for chronic headache.
Be mindful that there will be a minority of children who develop a complex of
disability and distress associated with chronic pain. These children and their
families may require a multidisciplinary intervention and should be referred for
assessment.
Conclusion
Chronic pain is a significant childhood problem, which is poorly understood. More research
is needed to determine the nature and impact of chronic pain in childhood and to examine
the effectiveness of treatments. Children with chronic pain should have access to
appropriate services and funding policies should reflect the multidisciplinary complexity
and efforts required to assess and treat children with chronic pain. Pain that has lost its
usefulness as a signal to warn us about harm or danger can become a problem by itself.
Learning to recognise when non-pharmacological strategies can be helpful can empower
many young people to live satisfying childhoods, despite the pain. For those families whose
lives have been overtaken by the demands of chronic pain, there is emerging evidence that
young people and their parents can recover from chronic disability, dependency and
distress, and return to a normal life.
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Eccleston C et al (2005) The Bath Adolescent Pain Questionnaire (BAPQ): Development and
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Box 1: A useful patient and family guide
See Lonnie Zeltzer and Christina Blackett Schlank (2005) Conquering your Child’s Pain:
A Pediatrician’s Guide for Reclaiming a Normal Childhood. Harper Collins, New York.
Box 2: The Bath Pain Management Unit
Details of the Bath Pain Management Unit can be found on www.bath.ac.uk/pain-
management/
Box 3: Internet resources.
Children’s Pain Assessment: www.ich.ucl.ac.uk/cpap/index.html
Information for children and families: www.aboutkidshealth.ca/PNHome.asp
www.childrenfirst.nhs.uk/teens/life/campaigns/archive/2005/pain_awareness_tips.html
www.gosh.nhs.uk/factsheets/families/F050225/index.html
School
Social Life
Fitness
Independ-
ence
Eating
Sleep
Activity
Mood
Family
Money
Pain
Figure 1: Pain Associated Disability Syndrome (PADS) (after Bursch et al. 1998)