Report of the Subcommittee on Assessment and Methodologic Issues in the Management of Pain in Childhood Cancer

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Report

of the Subcommittee

on Assessment

and Methodologic

Issues

in the Management

of

Pain in Childhood

Cancer

P. J. McGrath

(co-ordinator),

J. Beyer,

C. Cleeland,

J. Eland,

P. A. McGrath,

and

R. Portenoy

Pain is a complex, multidimensional experience that has at least two major components. The first, nociception, is a sensory component directly related to activity in neural pathways responsive to tissue damage. The second is the complex psychologic, physiologic, emotional, and behavioral response to the nociception. This response is determined by many intrinsic and extrinsic factors. In general, children will have less pain when the exacerbating factors, which are outlined in Table 1, are mini-mized.

Because pain is experienced individually and sub-jectively, assessment of pain in each individual is

essential. Assumptions regarding an individual’s pain should not and cannot be inferred from the amount of tissue damage he or she has experienced. Therefore, regarding assessment of pain in children with cancer, the following principles were agreed upon.

1. Systematic assessment of pain should be con-sidered a necessary part of the management of cancer. Most children with cancer will be at risk for significant pain at some time during the course of their illness. Such pain can be caused by the disease itself, by invasive diagnostic and monitoring procedures, and by treatment. Therefore, adequate care must include a plan for comprehensive assess-ment and management of all forms of pain in addition to the disease-management protocol.

2. Assessment of pain must be ongoing through-out the course of the illness. Sources of nociception and modifying factors will change through time and must be evaluated continuously.

MEASUREMENT

OF PAIN

Although comprehensive assessment of pain must include more than measurement of intensity or severity, this aspect of pain is important and has been studied the most widely. Simple, clinically useful measures for evaluating the intensity of pain

in children aged 3 years and older are both readily available and validated.

Several important features of the measurement of pain are noteworthy.

1. The child’s report of pain, if available and solicited in an appropriate manner, is the best indicator of pain. If a child says he or she is in pain, the child should be believed.

2. If pain becomes greater than that which is expected from known causes, undetected factors which may be affecting its intensity should be sus-pected.

3. If a child denies pain when there is obvious evidence of tissue damage or if altered behavior indicates pain (see Table 2), the reasons for the inconsistency between physical findings, behavior, and self-report should be investigated thoroughly.

4. Neonates and infants feel pain, and neonates are not less sensitive to noxious stimulation than older children and adults4 Therefore, assessment of pain, although more complex than in older children, should be considered essential to the care of neo-nates and infants. In infants, reliance on facial expression, cry, posture, and physiologic variables such as heart rate, respiratory rate, blood pressure, and palmar sweating are important as potential indicators of pain.

5. Questions such as “How are you feeling?” or “How is your pain?” should be considered social gambits and not measures of pain.

6.

Developmental considerations play a major role in the selection of measures of pain (see Table

3). Before 2#{189}years of age, no quantifiable self-report is usually available, and assessment of pain is inferred from behavioral and physiologic re-sponses. When language first begins, only yes or no determinations are possible. However, by 3 years of age, indications of greater or lesser are usually possible by use of terms from their own experience such as “big hurt” or “little hurt.”

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TABLE 1. Factors Exacerbating Children’s Pain

SUPPLEMENT

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Intrinsic factors

Child’s anxiety, depression, and fear

Previous experience with inadequately managed pain Child’s lack of control

Experience of other aversive symptoms (nausea,

fa-tigue, dyspnea)

Child’s negative interpretation of situation Extrinsic factors

Anxiety and fears of parents and siblings Poor prognosis

Invasiveness of treatment regimen

Parental reinforcement of extreme under-reaction (stoicism) or over-reaction to pain

Inadequate pain management practices of health care staff

Boring or age-inappropriate environment

cancer can provide reports of varying levels of in-tensity of pain. In a clinical setting, an estimate of relative intensity of pain can often be obtained through careful interviewing using the child’s own language and his or her previous experience with pain. More precise measurement ofpain in children older than 3 years is also possible using develop-mentally appropriate specialized measures that have been validated.57 In these instruments, chil-dren are presented with a series of photographs or cartoon faces of children in various phases of dis-comfort, and they are asked to select the face which mirrors the degree of pain they are experiencing. Most children from 3 to 6 years of age accept these measures easily. Medical staff generally find them extremely helpful, and their use in clinical practice is strongly encouraged.

Simple, self-report measures are recommended for children older than 6 years of age. Among the most useful scales for measuring intensity of pain are (a) visual analogue scales (either vertical or horizontal) (see Fig. 1) and (b) simple numerical scales such as: “If 0 means no hurt or pain and 10 means the biggest hurt or pain you could ever have, tell me how much hurt or pain you have now.”

In contrast to measurement of adult pain, the use of adjectival categorical scales such as “mild,” “moderate,” “severe,” and “excruciating” are not recommended for children younger than 13 years of age.

Behavioral observations should not be used in lieu of self-report. However, behavioral observa-tions (Table 2) are invaluable in several important situations. (a) When self-report is not available, for example in children younger than 2 years of age or in children without verbal ability due to disability or disease, behavior provides the primary means of pain assessment. (b) In the presence of noxious stimuli, behavioral pain indicators should arouse

suspicion and should prompt additional investiga-tions even in the absence of a verbal report of pain.

The behaviors outlined in Table 2 should be considered clues to pain. In the context of known pain-producing stimuli, they support and augment the verbal report and, in some cases, give ample justification for analgesic therapy, even if no report is forthcoming. There are individual differences in pain behaviors that may be assessed best in con-sultation with the child’s parents, who are usually most familiar with their child’s behavior and its implications. Behavioral responses to the acute pain of invasive procedures, such as bone marrow aspiration, are usually more pronounced than re-sponses to chronic pain such as that caused by the cancer. Like adults, children adapt to prolonged pain, and both behavioral and physiologic responses may not be evident. More subtle changes, such as a child’s reduction in play, may be helpful in this context.

Heretofore there has been a tendency to assume that the degree of children’s distress relates to factors other than pain, eg, separation from parents or anxiety. This attitude can compromise the med-ical staff’s response to the child’s pain. As in adults, the context of the pain should be used to clarify the behavior. In the presence of tissue damage, distress behaviors can be assumed to be caused by pain unless there is evidence to the contrary.

There are currently no physiologic measures that reliably indicate pain. Treatment of pain should never be withheld based on the lack of physiologic perturbations alone.

THE PAIN PROBLEM LIST

The committee proposes that clinicians develop and use a Pain Problem List for every child with cancer. The Pain Problem List is the outcome of an assessment process that begins with the pain history. The history is used to characterize the pain according to its mechanism (neuropathic, somatic, visceral), the related syndrome (spinal cord

TABLE 2. Behavioral In dicators of Pain

Behavior Not Present Present

Crying 0 0

Fussing, irritability 0 0 Withdrawal from social 0 0

interaction

Sleep disturbance 0 0

Facial grimacing 0 0

Guarding 0 0

Not easily consoled 0 0 Reduction in eating 0 0

Reduction in play 0 0

Reduction in attention 0 0 span

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TABLE 3. Age and Measures of Pain Intensity*

Age Self-report Measures Behavior Measures Physiologic Measures

Birth to 3 y Not available Of primary importance Of secondary importance

3 y to 6 y Specialized, develop-mentally appropri-ate scales available

Primary if self-report not available

Of secondary importance

>6 y Of primary importance Of secondary

impor-tance

* Measures of pain in children have been reviewed by Beyer and Wells,5 McGrath and

Unruh,6 McGrath,7 and Ross and Ross.8

NO PAIN

Fig 1. Visual analogue scale.

PAIN AS SEVERE AS

POSSIBLE

compression, generalized bone pain), and other key features that may influence the decision to imple-ment one therapy rather than another. Whenever possible, it is essential to identify the source of the tissue-damaging stimuli. In some cases, such as procedure-related pain, the source is obvious, and the clinician should proceed to assess the charac-teristics of this pain (intensity, location, temporal characteristics, pain quality, and provocative and palliative factors) and the modifying factors (Table 1). When the source of nociception is not obvious, vigorous efforts should be made to elucidate it by means of the medical history, physical examination, and confirmatory imaging and other laboratory tests. It is rare for pain to be present without an underlying cause. Underlying causes may result from complex interactions between the disease and the treatment of the disease.

The purpose of the Pain Problem List is to iden-tify problems amenable to intervention and to as-sist in selecting the most appropriate treatments to reduce pain in accord with the cause and contrib-uting factors. The Pain Problem List can be partic-ularly helpful because there are multiple sources and dimensions of pain; there are multiple treat-ments available, and several may be required si-multaneously; pain occurs in the context of ongoing medical disease and other ongoing medical and psychosocial problems which will require continu-ing care; and optimal management may require a multidisciplinary approach, and the problem list will help organize the resources.

For example, the current Pain Problem List for a 4 year old with acute leukemia and mucositis after chemotherapy might be:

1. Severe mouth pain related to mucositis

2. Mild bone pain related to invasion of bone marrow

3. Anxiety related to pain and concern about prognosis

4. Reduced eating related to mouth pain

5. Nightmares and disturbed sleep related to bone marrow aspirations.

This problem list then serves as the basis for generating specific interventions to ameliorate the pain.

The Pain Problem List is a subsection of the patient’s problem list and should be entered in the appropriate section of the medical record.

ASSESSING

THE

EFFECTS

OF

INTERVENTIONS

The goal of analgesia is to provide maximum pain relief with minimal side effects. In some cases, adequate analgesic management can produce com-plete elimination of pain without uncomfortable effects. In others, a trade-off will have to be made balancing pain against side effects. The wishes of the child and the child’s family should be para-mount in assessing this aspect of analgesic therapy. For example, some children tolerate some pain so that complete alertness can be retained, whereas others will accept drowsiness which may indeed become a welcome relief from the struggle against the disease.

Children and adolescents have difficulty respond-ing to scales that assess the degree of improvement. Therefore, it is usually unwise to ask, “How much has your pain improved?” Repeated measures of intensity should be used, and reductions in pain intensity scores should be considered an indication of improvement. Children can be reminded of their previous rating to help them assess changes as well.

Children younger than 6 years of age are often unable to answer questions regarding the accepta-bility of the side effects of analgesics.

ASSURING

QUALITY

CARE

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SUPPLEMENT

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frequently requires the input of all health disci-plines. The primary care giver (physician or clinical nurse) should compile the Pain Problem List which should be entered in the medical chart. Measure-ment of pain should be considered the equivalent of vital signs and regularly recorded at the child’s bedside and entered in the medical chart. Pain flow sheets may facilitate such charting and are recom-mended. Institutional Quality Assurance Programs should require these measures and should monitor the measurement of pain and treatment standards.

Recently, Mohide et al9 have developed a quality assurance audit, scoring guide, and instruction manual for adult cancer pain. Such an approach should be developed for pediatric cancer pain.

Parents have a key role to play in the assessment and management of their child’s pain. Parents are usually careful observers of their child’s behavior and will notice subtle changes caused by pain. Par-ents should be encouraged to exercise their rights to be advocates for adequate pain control for their children.

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1990;86;814

Pediatrics

P. J. McGrath, J. Beyer, C. Cleeland, J. Eland, P. A. McGrath and R. Portenoy

Management of Pain in Childhood Cancer

Report of the Subcommittee on Assessment and Methodologic Issues in the

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1990;86;814

Pediatrics

P. J. McGrath, J. Beyer, C. Cleeland, J. Eland, P. A. McGrath and R. Portenoy

Management of Pain in Childhood Cancer

Report of the Subcommittee on Assessment and Methodologic Issues in the

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