Journal of Pediatric Psychology Advance Access originally published online on September 8, 2005
Journal of Pediatric Psychology 2006 31(7):684-697; doi:10.1093/jpepsy/jsj061
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The Impact of Chronic Pain on Adolescents: A Review of Previously Used Measures
1 University of Bath and 2 Ghent University
All correspondence concerning this article should be addressed to Prof. Christopher Eccleston, Pain and Managment Unit, The University of Bath, UK, BA2 7AY. E-mail: c.Eccleston{at}bath.ac.uk.
Received February 13, 2004; revisions received July 6, 2004 and August 31, 2004; accepted September 3, 2004
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Abstract |
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Objective To review the use of instruments to assess the impact of adolescent chronic pain, focussing on the development of instruments, the domains covered, psychometric properties, and published use with adolescent chronic pain patients. Methods Systematic literature searching recovered 706 articles, yielding 116 relevant articles, employing a total of 43 separate measurement instruments, which were subjected to content analysis. Results Most instruments were in the psychological domain (n = 22), with a self-report format (n = 36). Thirty instruments were specifically developed for adolescent populations; only 12 instruments had psychometric evaluation with adolescent chronic pain patients. The median use of any one instrument in published studies was two. Clinically relevant psychometric data were missing for many instruments. Conclusions There is a diversity of instrumentation with some pockets of depth of use, but some domains of chronic pain experience with no routine assessment. Further development of the knowledge base of measurement of the impact of chronic adolescent pain is necessary.
Key words: adolescents; assessment; chronic pain; measurement.
Adolescents frequently experience and report pain (Goodman & McGrath, 1991
; Perquin, Hazebroek-Kampschreur, Hunfeld, Bohnen et al., 2000). For a minority of adolescents the pain can persist for over three months to become chronic pain, with 8% reporting their chronic pain as severe (Perquin, Hazebroek-Kampschreur, Hunfeld, van Suijlekom-Smit et al., 2000). In addition to the adverse experience of persistent pain, adolescents with chronic pain can also report that the pain has had a widespread, generally negative, affect on all aspects of their life (Malleson, Connell, Bennett, & Eccleston, 2001; Reid, Lang, & McGrath, 1997).
Adolescents with chronic pain often report disability, including a reduction in the activities that make up everyday physical activity such as walking and sitting unaided, the amount of rest required outside normal sleeping, and disturbances in self-management behaviour such as eating and washing (Hunfeld et al., 2002). Unwelcome changes in social and schooling/occupational activities are also commonly reported (Reid et al., 1997; Walker, Guite, Duke, Barnard, & Greene, 1998). In addition to social and physical functioning (Walker & Greene, 1991), adolescents also report negative changes in global affective domains such as depression and anxiety (Andrasik et al., 1988; Conte, Walco, & Kimura, 2003), and more specific change in psychosocial functioning such as an anxious sensitivity to a wide range of physical sensation (Smith, Martin-Herz, Womack, & Marsigan, 2003). This complex of physical, social, and psychological domains that are often detrimentally affected by chronic pain has been called a chronic pain syndrome.
Psychosocial treatments for the management of chronic pain have been developed and continue to be evaluated. There is a robust evidence base for treatments of the most common form of chronic pain, headache, with strong evidence for relaxation and biofeedback in reducing the number and severity of headaches reported (McGrath, Stewart, & Koster, 2001). There is also a growing evidence base for the effects of psychological treatments of musculoskeletal pain, recurrent abdominal pain, and disease related pain, including patients with oncologic, rheumatologic, and hematologic disorders (Haldorsen, Kronholm, Skouen, & Ursin, 1998; Janicke & Finney, 1999; Kuppenheimer & Brown, 2002; Scharff, 1997; Thomas, Dixon, & Milligan, 1999; Walco, Varni, & Ilowite, 1992). Despite the recognition that the negative consequences of chronic and recurrent pain are widespread and that psychological treatments may be effective in reducing or eliminating these consequences, a recent systematic review of the 18 identified randomized controlled trials found that, although all 18 trials incorporated a measure of pain as a primary outcome, only 3 included an instrument specifically designed to measure domains other than pain experience (Eccleston, Morley, Williams, Yorke, & Mastroyannopoulou, 2002). It is not clear whether the omission of instruments to assess domains other than pain reflects a judgement that nonpain outcomes are unimportant in trials and outcome studies of psychological therapy, or whether it arises from the lack of appropriate measurement tools.
Assessment of the widespread effects of chronic pain on the disability associated with chronic pain is an important challenge. Palermo (2000), for example, states that "...research on recurrent and chronic pain in children has focused primarily on the assessment of pain symptoms (e.g., duration, intensity) to the neglect of the functional consequences of pain, which are highly relevant to overall child and family wellbeing" (pp. 58–59). For this review we chose to undertake an investigation of the instruments that have been used to assess the detrimental effects of chronic pain. We limited our review to published studies of adolescent chronic pain, with an interest in the domains and tools that authors have chosen rather than the more exhaustive list of measures that could possibly be chosen. To organize the review we adopted the internationally accepted and broadly inclusive taxonomy of physical, social, and psychological (Rajmil et al., 2004; World Health Organisation, 1948). We excluded instruments designed to measure pain experience because we judged this to be a well mapped, and already served, area: one where adequate methods exist (Finley & McGrath, 1998; McGrath & Gillespie, 2001). In addition, we excluded the related but independent area of the measurement of adolescent quality of life; we judge quality of life to be a much broader concept, with more general application. For recent reviews of paediatric quality of life measures see Eiser (1997), Eiser and Morse (2001), and Rajmil et al. (2004). The exception to this rule was the inclusion of multidimensional "quality of life" instruments that are health dominated and that were developed specifically for a chronic pain population. The overall aim of the study is to provide clinicians and researchers with a summary of measurement instruments used in previous studies to measure the impact of chronic pain on adolescents: to describe the development of the instruments, note the domains covered, report on their psychometric properties, and chart their use with chronic pain patients.
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Method |
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A descriptive and evaluative approach was adopted to explore the content of published instruments that measure the effects of chronic pain on adolescent health (Miles & Huberman, 1994
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Inclusion Criteria
We decided to include all self-report, and other-report instruments, used in published studies with adolescent chronic pain populations. Adolescence was defined for the purposes of this study as the ages between and including 11–18 years. All instruments that have been used in studies that focus specifically on individuals in this age group were therefore included in the study. All measures that met the above inclusion criteria, and were either published in the English language, or a translation of the original measure was published in the English language, were included.
Search Strategies
A three-stage search strategy was developed, informed by guidance from the Cochrane collaboration and previous systematic reviews undertaken by our group (e.g., Eccleston et al., 2002). First, Medline, Psychinfo, and Embase were searched for any published article reporting instrument development or use in the related areas of paediatric and adolescent pain and chronic illness. Searches were restricted to the period from 1 January 1980 to 14 January 2004. Different search strategies were created using the architecture of the different search engines, but all included terms referring to chronic illness with pain, specific chronic pain conditions (e.g., "chronic pain," "migraine"), and terms with diseases for which chronic pain is a common complaint (including fibromyalgia, Comples Regional Pain Syndrome, sickle cell disease, etc.). This produced 587 articles. Second, the reference sections of these and six relevant review articles were searched, identifying 109 further articles. From this search 696 relevant articles were recovered. Third, authors of instruments, and key researchers current in the field of paediatric pain management, were asked to identify articles concerned with the measurement of the effects of chronic adolescent pain. This produced a further 10 articles. On closer examination 566 articles were excluded because they did not meet the study inclusion criteria with regards to age of adolescent participants and diagnosis of chronic pain. The two primary reasons for excluding identified papers from the review were that they examined acute pain, such as postoperative pain, and that the studies included child but not adolescent participants. The final number of articles entering the review was 140.
Final Sample
In the 140 articles identified, 52 separate instruments had been employed. Instruments irrelevant to this study were excluded leaving a final sample of 43 different measurement instruments, reported in 116 published articles. All of the instruments were collected, and primary articles reporting their development, or the psychometric properties of the instruments, were collected.
Analysis
First, based on their original description or the item content, the 43 instruments were classified for membership to one of three categories: physical, psychological, or social (Rajmil et al., 2004; World Health Organisation, 1948); or to a remaining category of "multiple domains." Note was also taken of the primary content of each of the measures, including any subdomains, and the number of items.
Second, note was taken of the derivation of each instrument. In particular, we were interested in whether each instrument had been developed initially for an adolescent or adult population; and whether each instrument had been developed specifically for use with an adolescent chronic pain population.
Third, data on any psychometric evaluation with adolescent populations were recorded. In particular, we were interested in whether instruments had been investigated for their validity and reliability in measuring adolescent chronic pain-related experiences. Three tests of validity were recorded: construct, criterion, and content. Construct validity refers to the ability to measure the intended constructs in the population of interest and is normally undertaken by comparison with other instruments measuring similar constructs or with factor analysis. Criterion validity refers to the value of the instrument in predicting relevant or hypothesized outcomes. Content validity refers to the extent to which typical aspects of a construct are represented by the items. Four tests of reliability were also recorded: temporal stability, internal consistency, sensitivity to change, and interrater reliability. Temporal stability, or test–retest reliability, refers to the stability of a measure to remain unaltered over a period with a hypothetical lack of change in a given sample. Typically, instruments are administered to a small untreated sample at two points in time. Temporal stability data are particularly important for calculations of clinical significance in studies of treatment effectiveness (Turk, 2002). Internal consistency refers to the extent to which the item scores are interrelated and measure the same phenomena. Sensitivity to change is the extent to which change in the measured construct, brought about by an intervention designed to produce change on the target domain, is captured by the instrument. This is particularly important for the use of a measure in clinical trials or clinical evaluations. Interrater reliability is an index of the score congruency between different raters.
Finally, an analysis of the usage of each instrument was undertaken using the ISI Web of Science© search engine. Each primary published study, and any later studies concerning the use of a specific instrument, were tracked (Cawkell, 2000). Additional searches for later studies concerning the use of a specific instrument were also carried out using Psychinfo and Embase, because not all primary published studies were abstracted in Web of Science©. For each search, relevant publications were reviewed. Where each citation referred to a study that had employed the instrument, this was noted. An overall raw score of each measure (number of studies employing an instrument) was recorded.
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Results |
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Table I presents a summary of measures recovered, their authorship, and accessibility. Overall there were 7 instruments in the physical domain, 22 instruments in the psychological domain, 5 instruments in the social domain, and 9 instruments in the multiple domains category. Of the nine multiple domain instruments eight contained subdomains of physical, psychological, and social items
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Table II presents a summary of the results. The median number of items in each scale was 39.5, ranging from 5 (Migraine Disability Assessment Questionnaire, Stewart, Lipton, Simon, Von Korff, & Liberman, 1998) to 577 (extended parental version of Vineland Adaptive Behavior Scales, Sparrow, Balla, & Cicchetti, 1984).
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Thirty-six of the instruments were developed with self-report format, 11 had parental report, 2 had teacher report, 8 included both adolescent and parent report, and 3 were completed during clinical interview.
Thirty instruments were developed originally for use with child and adolescent populations, 5 were developed solely for use with adolescent populations, 6 were developed originally with an adult population and further 7 measures were developed for populations including both adults and adolescents. Fifteen instruments were developed with participants in chronic pain. Thirty-eight of the 43 have had at least one psychometric evaluation in a sample of adolescents, with 12 measures having at least one psychometric evaluation in an adolescent chronic pain population. Four measures were adapted from adult instruments (e.g., Pain Catastrophizing Scale for Children, Crombez et al., 2003; Coping Strategies Questionnaire for Children, Gil, Williams, Thompson, & Kinney, 1991; State Trait Anxiety for Children, Spielberger, 1973; and Child Health Assessment Questionnaire, Singh, Athreya, Fries, & Goldsmith, 1994), and 9 measures (Children’s Somatization Inventory, Walker & Garber, 1992; Functional Disability Inventory, Walker & Greene, 1991; Pain Response Inventory, Walker, Smith, Garber, & VanSlyke, 1997; Coping Strategies Questionnaire for Children, Gil et al., 1991; Reid et al., 1997; Quality of Life Questionnaire for Adolescents with Chronic Pain, Merlijn, Hunfeld, van der Wouden, Hazelbroek-Kampschreur, & Passchier, 2002; Quality of Life Headache in Youth, Langeveld, Koot, Loonen, Hazebroek-Kampschreur, & Passchier, 1996; Children’s Headache Assessment Scale, Budd & Kedesdy, 1989; and Pain Catastrophizing Scale for Children, Crombez et al., 2003) were developed explicitly with adolescent chronic pain populations.
Of the 12 instruments with psychometric information in adolescent chronic pain populations, 11 underwent an evaluation of construct validity. Eight instruments underwent a test of criterion validity, and 2 instruments were examined for its content validity. In reliability analyzes, the most common analysis undertaken was internal consistency with all 12 instruments examined. Seven instruments underwent a test of temporal reliability, interrater reliability was reported on five instruments, and sensitivity to change was not reported, except for one instrument.
The two most commonly used instruments with adolescent chronic pain samples were both from the psychological domain: the Child Behavior Checklist (Achenbach, 1991) (n = 33) and the Children’s Depression Inventory (Kovacs, 1981) (n = 23). The most commonly used measure specifically developed for adolescent chronic pain patients was the Functional Disability Inventory (Walker & Greene, 1991) (n = 15). Most instruments have been used in a small number of studies (Mdn = 2).
The 12 instruments developed with chronic pain populations were critically assessed in more detail. The Quality of Life Headache in Youth (QLH-Y) (Langeveld et al., 1996) was validated in only a small sample of chronic headache and other pain nonpatient sample, but had good reliability data, making it useful for clinical trial work. The Children’s Headache Assessment Scale (CHAS) (Budd & Kedesdy, 1989) was undertaken on a small sample of children and adolescents but gave very good temporal reliability data. It also performed well in a later confirmatory factor analysis (Bijttebier & Vertommen, 1999). Its content is, however, biased toward younger participants. The Pain Response Inventory (PRI) (Walker et al., 1997) is particularly useful because good comparative data are available in clinic, ex-clinic, and nonclinic samples. Construct validity data are excellent although the temporal reliability data for a clinical sample are poor. However, a long time frame was used with the clinical sample which may give a poor picture of its real stability. The Childhood Health Assessment Questionnaire (CHAQ) (Singh et al., 1994) and the Juvenile Arthritis Functional Assessment Report (JAFAR) (Howe et al., 1991) require further validation if they are to be used with more general chronic pain populations. Temporal stability has not been adequately established in either. The Functional Disability Inventory (FDI) (Walker & Greene, 1991) and the Children’s Somatization Inventory (CSI) (Walker & Garber, 1992) have very good temporal reliability and data usefully comparable over multiple time frames. Confirmatory factor analysis is necessary for the FDI to establish the subdomains of broad social and physical disability content. Further data were available on the Coping Strategies Questionnaire for Children (CSQ-C) from sickle-cell pain populations (Gil et al. 1991; Gil, Wilson, & Edens, 1997). Again, the temporal stability was tested over a long time frame and data on shorter time frames would be helpful for studies of clinical effectiveness. The Quality of Life Questionnaire for Adolescents with Chronic Pain (QLA-CP) (Merlijn et al., 2002) and the Pain Catastrophising Scale for Children (PCS-C) (Crombez et al., 2003) both showed excellent internal consistency but are in need of further validation and more comparison across centres. The Pain Coping Questionnaire (PCQ) (Reid, Gilbert, & McGrath, 1998), although popular, was first developed in a large nonpatient sample, with a small chronic pain sample. Its focus is on coping styles and more validation is needed across different chronic pain samples. In particular, information is needed on its temporal stability and treatment sensitivity. Finally, the Responses to Stress Questionnaire (RSQ) (Connor-Smith, Compas, Wadsworth, Thomsen, & Saltzman, 2000) has established very good temporal reliability and validity data in a sample of patients with Recurrent Abdominal Pain. It will be important to establish similar data on other chronic pain samples.
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Discussion |
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Forty-three separate instruments have been used in research, published in 116 studies in adolescents with chronic pain. Most were developed with other samples, but tested further in chronic pain samples. A minority of nine instruments were specifically designed for use with adolescents in chronic pain, with one additional instrument having undergone at least one type of psychometric evaluation with adolescents in chronic pain. The largest number of instruments is to be found measuring psychological aspects of ill-health, with 7 alone designed to assess adolescent depression. Instrument development in other domains of health has received less attention: for example, we found only five instruments that were designed to specifically measure social functioning.
There is a diversity of instrumentation available for use, but there are some pockets of depth of data to allow comparison across samples. Despite the diversity, there remain some aspects of the experience of chronic adolescent pain that are rarely examined. For example, we were unable to find instances of use of an instrument to assess the impact of chronic pain on cognitive functioning (Bonner, Gustafson, Schumacher, & Thompson, 1999) or on the economic impact of chronic pain. No instrument was recovered that focused upon the impact of pain on social development during adolescence (Meijer, Sinnema, Bijstra, Mellenbergh, & Wolters, 2000). Similarly, instruments for assessing the varied experience of sleep were only applied once. Further, we found no measurement of one significant aspect of social behaviour: educational functioning. It should be recognized that some of the instruments classified in the four domains had item content that referred to interference in school attendance, and a small number of studies take a single item assessment of school-related behavior. However, aspects of educational functioning such as school attendance, test performance, learning abilities, and peer relationships are complex behaviors that deserve closer scrutiny, and the development of new separate instruments (Bonner et al., 1999; Campo, Comer, Jansen-McWilliams, Gardner, & Kelleher, 2002; Fuggle, Shand, Gill, & Davies, 1996; Walker et al., 1998).
The study also revealed some pertinent gaps in psychometric evaluation of instruments when applied to adolescent chronic pain samples. First, the investigation of temporal stability and sensitivity to change are rarely undertaken. This information is, however, crucial whenever the objective is to assess the effectiveness of an intervention in a study that measures health status at different time points. It is important to know whether a change in a health domain results from an intervention or an unstable instrument (Eccleston et al., 2002; Malleson et al., 2001). Second, there are very few data regarding the validity of the item content of instruments. Where a domain or subdomain is labeled to reflect a construct, evidence is commonly missing as to the extent or completeness of coverage of the construct. Doubt sometimes arises as to whether all, or even the most critical, items have been included. For example, we recently adapted the adult Pain Catastrophizing Scale for use with adolescents (Crombez et al., 2003; Sullivan, Bishop, & Pivik, 1995). Although we were able to demonstrate that the construct and predictive validity of the Pain Catastrophising Scale for Children were excellent (Crombez et al., 2003), we remain ignorant as to whether important aspects of catastrophizing about pain in adolescents are being missed because we did not start with a sampling of child experience. Other instruments that have been adapted from adult versions may suffer from similar problems as our PCS-C. Third, the uncritical use in pain studies of instruments developed with samples other than adolescent chronic pain could be a source of concern. For example, some somatic items of depression that are valid in nonpain populations have been found in adults with chronic pain to reflect pain severity (Williams & Richardson, 1993).
There are many issues that should be taken into account regarding our analysis. First, in focussing upon the instruments that have been used we have taken no account of instruments that may be excellent and relevant but have not yet been used with chronic pain populations. Second, in adopting the broad WHO criteria we focussed on self or other report-based instruments in the physical domain and did not systematically collect data on the few instances in which biological data may have been collected. Third, in classifying some of the instruments to primary WHO domains, some decisions may be more contentious than others. In particular, the Children’s Somatization Inventory (Walker & Garber, 1992) and the Modified Somatic Perception Questionnaire (MSPQ; Main, 1983) were considered to be in the physical domain and not in the psychological, because they sample the diversity and severity of somatic symptoms. We recognize, however, that some researchers might consider them as measuring somatoform phenomena (Garralda, 1996). Fourth, and in a similar vein, we chose to include in the psychological domain instruments developed to assess "coping" (Pain Response Inventory, Walker et al., 1997; Coping Strategies Questionnaire for Children, Gil et al., 1991; Kidcope, Spirito, Stark, & Williams 1988; Responses to Stress Questionnaire, Connor-Smith et al., 2000; and Reid et al., 1998). According to some definitions "coping" is not an essential part of health, but a process that may affect health (Compas, Connor-Smith, Saltzman, Thomsen, & Wadsworth, 2001). We are in broad agreement with this definition, but judged that the instruments reviewed had content that reflected appraisal of current health. Nevertheless, these coping instruments should perhaps be considered as measures of psychological processes rather than health outcomes. Fifth, our assessment of measurement popularity should be interpreted with caution; popularity may be caused by variety of factors, such as the age of the instrument. Finally, although this is a study of instruments for adolescents with chronic pain, some were included because they were developed for children, but the originators of the instruments had defined childhood into the 11–18 years of age range. Some instruments should be treated cautiously in application with the whole age range of adolescent populations. For example, the Children’s Sleeping Habits Questionnaire (Owens, Spirito, & McGuinn, 2000) is developed in a sample of 7–12 year old participants; and, the Children’s Depression Rating Scale (Pozanski & Mokros, 1996) is developed in a sample of 6–12 year old participants.
In choosing a measure or a set of measures for audit or outcome the first and most important aspect is to clearly define the aims of treatment. For example, if pain reduction is an aim, one needs to specify whether the quality or intensity is to change, for how many episodes, by how much, for how long, and according to whom, and so on. Similarly, more complex psychosocial interventions often need to specify in how many domains of outcome change is expected. For chronic pain patients, we suggest a minimal set of measures designed to assess pain, physical, and psychosocial functioning in as broad a set of contexts as is feasible (including, sleep, education, etc.). Analysis will need to take account of developmental and social context. In this regard, instruments should be selected that have good test–retest reliability, validity tests undertaken as close to the sample under investigation as possible, and population norms or clinical comparators. In the application it is important to reduce any demand characteristics of the environment by standardizing the administration, and, if possible, using computerized report versions of instruments (Williams, 2003).
In conclusion, there is a diversity of instrumentation available to assess the impact of chronic pain on adolescent health. Most instruments have been used infrequently and there are important areas of health status that are not well covered or are missing. More information is needed on the content validity, temporal stability, and sensitivity to change in existing instruments. Helpful will be cross-site, and preferably cross-national, collaboration with similar sets of measures to compare populations on the same instruments. Although more data are needed on some of the existing instruments, instruments used in one language need to be investigated in other languages. Further, there may be instruments of value that have not yet been used with a pain population. Finally, however, a healthy advance for the field will also be the construction and psychometric evaluation of instruments developed directly from the experience of adolescents in chronic pain, and informed specifically by theories of adolescent chronic pain.
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This research was grant supported by The Health Foundation, the BUPA Foundation, and the Royal National Hospital for Rheumatic Diseases, NHS Trust, Bath, UK.
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