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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: c.eccleston@bath.ac.uk

Elizabeth Bruce1 RGN, RSCN, MSc,

Clinical Nurse Specialist, Pain Control Service

Great Ormond Street Hospital for Children

London WC1N 3JH

Tel: 020 7813 8343 L.Bruce@ich.ucl.ac.uk

Bernie Carter2 PhD, BSc, RSCN, SRN

Professor of Children’s Nursing, Dept of Nursing

University of Central Lancashire

Preston, PR1 2HE

Tel: 01772 893720 bcarter@uclan.ac.uk

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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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)