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Measurement of health-related quality of life and physical function 

Measurement of health-related quality of life and physical function
Chapter:
Measurement of health-related quality of life and physical function
Author(s):

See Wan Tham

, Anna C. Wilson

, and Tonya M. Palermo

DOI:
10.1093/med/9780199642656.003.0041
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Summary

This chapter reviews the measurement of health-related quality of life (HRQOL) and physical function in paediatric pain populations. We present available data on HRQOL and physical function in children with pain, methods of assessment, details about specific questionnaire and performance-based measures, and recommendations for the use of measures based on available evidence. Because many children and adolescents with pain report impairment in participation in physical activities such as walking, running, and sports, physical functioning is a core target and outcome for intervention, particularly for youth with chronic pain. However, the domain of physical functioning encompasses a number of constructs such as physical fitness, physical activity, and subjective disability, which are interrelated, but represent distinct aspects of functioning. Moreover, HRQOL is a broader concept that subsumes physical and psychosocial function. A wide variety of measurement tools are in use, but no guidelines for measurement have been established. A better understanding of measurement of HRQOL and physical function may enable researchers and clinicians to track children’s functional impact and changes in function over time, and to improve the design and testing of potentially effective interventions for children with pain.

Introduction

It is well recognized that medical conditions and ill health may have significant impact across different areas of a child’s life. Pain, particularly chronic pain, may impair school attendance, mobility, self-care, interpersonal interactions, life activities, and community activities (Palermo, 2000). Health-related quality of life (HRQOL) refers to an individual’s perception of the impact of an illness, symptoms, and its consequent treatment on their physical, psychological, and social well-being, as well as perception of overall well-being in relation to their health (Eiser et al. 2001). Measurement of HRQOL incorporates assessment of three levels: (1) components of specific domains of functioning (e.g. difficulty walking up stairs), (2) individual domains of functioning (e.g. psychosocial, physical, school, and role functioning), and (3) an overall assessment of well-being (e.g. global health status). HRQOL scores are often summarized as broad-band scores for physical health and psychosocial health. Integral to the assessment of HRQOL is the domain of physical functioning. Physical functioning refers to actual participation in physical activities and ability to perform physical tasks, as well as the individual’s perception of difficulty or restriction in activity participation.

Physical function should be a primary treatment outcome for youth with pain and represents a specific domain requiring detailed assessment. The Pediatric Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials (Ped-IMMPACT) recommended outcome measures for clinical trials investigating acute and chronic pain in children (McGrath et al., 2008) and identified physical and role functioning as two of the eight core outcome domains. In this chapter, we review approaches for assessment of HRQOL as a multidimensional construct that incorporates the domains of physical and role functioning, and we separately review specific approaches to the assessment of physical functioning. We further describe measures of HRQOL and physical functioning in paediatric pain populations.

Health-related quality of life and physical function in children with painful conditions

Several examinations of HRQOL in children and adolescents with pain conditions (e.g. headache, sickle cell disease, mixed pain conditions) have found that they report significantly poorer HRQOL in comparison to healthy children (Nodari et al., 2002; Palermo et al., 2002). Moreover, unexplained chronic pain in adolescents has been associated with poor quality of life for the adolescent and his or her family (Hunfeld et al., 2001). Predictors of poor HRQOL within pain populations include the presence of sleep problems (Palermo and Kiska, 2005), fatigue (Berrin et al., 2007), pain-related hospitalizations (Palermo et al., 2002), low socioeconomic conditions (Palermo et al., 2008c) and increasing child age. Little is known, however, about how HRQOL changes over time in youth with pain.

Similarly, physical function has also been fairly extensively studied in youth with various pain conditions primarily to identify how chronic pain can affect children’s participation in developmentally appropriate physical and social activities. In one epidemiological study of chronic pain in a community sample of youth (Roth-Isigkeit, et al., 2005), impairments most commonly reported were: sleep problems (53.6%), inability to pursue hobbies (53.3%), eating problems (51.1%), school absence (48.8%), and inability to meet friends (46.7%). Huguet and Miro (2008) examined pain severity including impact from pain using validated measures in a population based sample. They found that 36.8% of youth had some disability, with 31.7% categorized as having a low level of disability and 5.1% having moderate to severe disability. These studies highlight that pain and disability can vary considerably among children with pain.

Prior reviews of HRQOL and function measures

Several recent reviews have provided summaries of measures that have been used to assess HRQOL and physical function in medical populations experiencing chronic pain or chronic illness. Eccleston et al. (2006) identified nine measures of the impact of pain on HRQOL and physical functioning in children with headache, arthritis, abdominal pain, and mixed pain conditions. They concluded that for the majority of the measures, the psychometric evaluations were limited in scope, and had only been used in a few studies.

Palermo et al. (2008b) reviewed 16 measures of HRQOL and functional impairment that have been used with paediatric populations including children with painful conditions. This review classified measures as being well established, approaching well established, or promising. Several well-established measures were found used in pain populations including the Pediatric Quality of Life Inventory (PedsQL; Varni et al., 1999), the Functional Disability Inventory (FDI; Walker and Greene, 1991), and the Child Activity Limitations Interview (CALI; Palermo, et al., 2004). Specific measures are discussed in more detail in later sections. This review called for further research, particularly regarding the validity of HRQOL and functional disability measures in response to interventions, and the clinical utility of changes in these measures (Palermo et al., 2008b).

There is little information available concerning measurement of HRQOL, physical or role functioning in children experiencing acute pain. This is in large part due to the way that measures have been developed in the field where the primary focus has been on the longer-term impact of illness on children. However, we recognize that HRQOL, physical, and role function may be important endpoints in the treatment of children with acute pain as well.

Methods of evaluation of HRQOL and physical function

Starting with the most commonly used method of evaluation, a clinical interview can be used to evaluate physical function. However, the evidence base reviewed here pertains to the use of standardized measures of HRQOL and physical function using validated questionnaires and objective/observational measures of performance. Examples of measurements within each of these methods are reviewed in the following sections; however, this is not intended to serve as an exhaustive review of the literature.

Clinical interview

The cornerstone of the clinical evaluation and assessment of the child in pain is the clinical interview. The clinician uses the interview to establish rapport, obtain a pain history, and to understand impact of pain on aspects of the child’s daily life. Interview probes about school, daily activities, sports participation, recreational and peer activities, and self-care activities can uncover areas of significant limitation in physical function (see Table 41.1). See supplementary online materials for additional interview probes in multiple domains of assessment.

Table 41.1 Clinical interview questions to assess physical and role function

Domain

Sample question

Overall health status

How would you describe your overall health?

Daily living

Describe a typical day. What is your routine? What activities do you do during the day?

Self-care

What do you do to take care of yourself and your body?

School participation

How often do you attend school? When you go to school, how long do you stay? Do you have any difficulties completing schoolwork?

Community participation

Do you participate in hobbies, like clubs or after-school activities, or church?

Physical activities

Do you participate in sports or other athletic activities? What activities are difficult for you to do because of your pain? What would you like to be able to do that you can’t do now?

Activities with peers

How often do you spend time with friends? What do you do with friends?

Activities with family

What activities do you do with your family (parents, siblings)?

Functional goals are often developed with children and parents around specific areas of limitation tailored to each child’s needs. Re-assessment of these allows for monitoring and tracking of patient outcomes. There are limitations to the use of clinical interviews to assess physical function, however, including that questions may be asked in different ways (i.e. lack of standardization), demand characteristics may influence responses, and there is a limited ability to make comparisons across children. Empirical support is not yet available to recommend a standardized clinical interview for assessing physical function in paediatric pain.

HRQOL questionnaires

HRQOL can be assessed on questionnaires that can be generic or condition-specific measures (Palermo et al., 2008b). Generic measures are not intended for a specific population, and allow for comparisons across children with different pain or medical conditions. Condition-specific HRQOL measures, on the other hand, are developed for examination of specific impairments experienced by children with the same health conditions. This may increase sensitivity in capturing the nuances of living with specific conditions. However, condition-specific instruments do not allow for comparative measurements across different illness groups, or between children with and without pain.

Two commonly used, well-established generic HRQOL measures that have been applied to pain populations are the Child Health Questionnaire (CHQ) and PedsQL. The CHQ is a widely used instrument, initially developed for use in healthy children (Landgraf et al., 1996). It incorporates 13 domains including psychosocial functioning, physical and role functioning, family cohesion, school and activity limitations, behaviour, self-esteem, and the emotional and time impact on the parent. Broad band measures of physical health and psychosocial health can be derived. This instrument has been used for HRQOL assessment in children with chronic pain conditions such as juvenile idiopathic arthritis and sickle cell disease (e.g. Panepinto et al., 2005; Selvaag et al., 2003). Notable strengths of the CHQ are the broad generalizability across different medical conditions (Bruijn et al., 2009; Krab et al., 2009), widespread international experience (Ruperto et al., 2001), and feasibility via Internet administration (Raat et al., 2007). Primary disadvantages of the CHQ are the excessive length of the scale in comparison to other HRQOL measures, the more limited range of child self-report (only available for age 10 and above), and that the parent and child versions are not parallel which prohibits direct comparison of parent and child reports.

Another commonly used instrument is PedsQL (Varni et al., 1999). Initially developed to assess HRQOL in children with cancer, it has undergone development and validation as both a core instrument and disease-specific modules within numerous paediatric medical populations. It assesses four core broad-band domains of physical, psychological, social and school functioning. The PedsQL 4.0 has been used for descriptive purposes in general pain populations and in specific pain conditions such as sickle cell disease and fibromyalgia (Dale et al., 2011; Gold et al., 2009; Varni et al., 2007a). It has been used in several intervention studies for outcome assessment (Hicks et al., 2006; Langley et al., 2011). Several disease-specific modules may be relevant for use with pain populations such as the Rheumatology Module (Varni et al., 2002) which includes subscales for pain and hurt, daily activities, treatment, worry, and communication. One unique feature of the PedsQL is the applicability across a wide age range; it has been validated for use from birth to 18 years old, with multiple versions for different ages (Varni et al., 2011). Research on the validity of this measure has been conducted internationally (Amiri et al., 2010; Tsuji et al., 2011) and across several ethnic and racial groups (Limbers et al., 2009). Construct validity was demonstrated by determining responsiveness following medical intervention over time (Varni et al., 1999). Several studies have found that the electronic (e-PedsQL) Internet mode of administration demonstrates equivalent properties to the paper and pencil mode of administration (Varni et al., 2008a; Young et al., 2009). The disadvantage of the PedsQL 4.0 is that the instrument provides a broad assessment of HRQOL and may not be responsive to changes in disease-specific symptoms. Additional details on psychometric evaluation of the generic measures of HRQOL can be found in Table 41.2.

Table 41.2 Psychometric characteristics of HRQOL and physical function measures

Name of measure

Number of items/administration burden

Validity

Reliability

Population developed

Construct

Criterion

Content

Temporal stability

Test–retest

Internal consistency

Sensitivity to change

Interrater reliability

Child Health Questionnaire (CHQ)

Child: 87 Parent: 98, 50, and 28 (3 versions)

x

x

x

x

Healthy and medical paediatric populations

Pediatric Quality of Life Inventory (PedsQL)

Child: 23 Parent: 23 Short form: 15

x

x

x

x

Paediatric medical populations

Pain Experience Questionnaire (PEQ)

Child: 15 Parent: 12

x

x

x

Paediatric chronic pain

Bath Adolescent Pain questionnaire (BAPQ)

Child: 61 Parent: 61

x

x

x

Paediatric chronic pain

Functional Disability Inventory (FDI)

Child: 15 Parent: 15

x

x

x

x

x

x

Paediatric chronic pain

Child Activity Limitations Interview (CALI)

Child: 21 Parent: 21

x

x

x

x

Paediatric chronic pain

Timed walk task

Up to 10 min to administer

x

x

Healthy and medical paediatric populations

Sit-to-stand task

Approx. 1 min to administer

x

x

Healthy and medical paediatric populations

There are two newer multidimensional measures designed specifically for children with pain conditions: the Bath Adolescent Pain Questionnaire (BAPQ; (Eccleston et al., 2005) and the Pain Experience Questionnaire (Hermann et al., 2008). Although a HRQOL framework was not used to develop these instruments, they both cover a range of constructs important in HRQOL assessment and were designed specifically to assess pain-related interference and functioning. The BAPQ was designed for adolescent and parent report and focuses on assessment of psychosocial, activity limitations, social, and family functioning. The PEQ was based on the Multidimensional Pain Inventory, commonly used in adults with chronic pain, and is a multidimensional pain measure designed for ages 7 and up. Both instruments require additional psychometric evaluation. However, the strengths of both measures are that they were developed for children and adolescents with chronic pain and may capture unique limitations and impact experienced by this population.

There are also HRQOL measures designed for specific paediatric pain populations. For children and adolescents with chronic headaches or migraines, available instruments include The Quality of Life Headache in Youth (QLH-Y) and The Migraine Specific Quality of Life Questionnaire Version 2.1(MSQ). The QLH-Y assesses the domains of psychological and social functioning, functional status, physical status, and satisfaction with life and health (Langeveld et al., 1996). The MSQ assesses impact of pain on physical, emotional, and social functioning (Martin et al., 2000). Both measures have been validated in relatively small samples. For children with arthritis, the Arthritis Impact Measurement Scales 2 (AIMS 2) and Juvenile Arthritis Quality of Life Questionnaire (JAQQ) have been used as disease specific measures of physical and psychosocial function in children with juvenile idiopathic arthritis (Duffy et al., 1997; Meenan et al., 1992).

Questionnaires for assessment of physical function

Questionnaires designed to capture activity limitations, restriction, and functional impairment or disability related to pain fall under the domain of physical function. They may provide a more comprehensive examination of areas of impact or disability that may be overlooked by general measures of HRQOL. For the child with a pain condition, measures of physical function may identify specific areas of decreased activity performance secondary to pain that could serve as the goal of intervention. Two generic and five condition-specific instruments of physical function are discussed in the following paragraphs.

Measures of functional impairment that assess subjective perception of difficulty performing activities include the Functional Disability Inventory (FDI) and the Child Activity Limitations Interview (CALI). Both were developed for children and adolescents with chronic pain. The FDI (Walker and Greene, 1991) was initially developed for adolescents with abdominal pain; it has since been used in children with other chronic pain conditions (headaches, musculoskeletal pain; Claar et al., 2006), as a descriptive measure (Kashikar-Zuck et al., 2011), and as a treatment outcome measure (Kashikar-Zuck et al., 2005). The CALI (Palermo et al., 2004; Palermo et al., 2008a) was developed to assess activity limitations associated with chronic pain in broader populations, and to allow for both retrospective assessment and daily prospective assessment in a diary format. It has been factor analysed and has been shown to be responsive to change in treatment outcome research (Palermo et al., 2009). Details of the psychometric evaluation of these measures can be found in Table 41.2.

Condition-specific measures of functional impairment are also available. For example, two measures assessing function in arthritis are the Child Health Assessment Questionnaire (CHAQ; Stephens et al., 2007) and the Juvenile Arthritis Functional Assessment Report (JAFAR). The CHAQ is a valid and reliable measure used to guide clinical decisions for level of assistance for functional impairment and to evaluate functional improvement after intervention (Halbig et al., 2009). The JAFAR has demonstrated good construct validity, reliability and responsiveness (Howe et al., 1991), and has been widely used in juvenile idiopathic arthritis. In the migraine population, the PedMIDAS (Hershey et al., 2004) is a brief measure with promising initial validation, and includes items assessing school, physical, recreation and peer participation.

Objective and observational measures of physical function

Certain constructs within the domain of physical function, including physical fitness and activity, are traditionally measured with objective and performance-based tools. For example, physical fitness may be measured using oxygen exchange for aerobic or anaerobic capacity, isokinetic machines or force dynamometers that measure torque and strength, and body mass index or skinfold calipers for body composition. Objective measures of physical activity may include motion sensing devices such as pedometers and accelerometers.

Observational performance-based measures of function provide information about an individual’s actual performance on tasks which are typically designed to mimic naturalistic tasks that would be encountered in daily life (e.g. lifting, walking). In rehabilitation settings, performance-based measures of function are routinely used in evaluation and re-evaluation of patients with chronic pain.

In adult pain research, a broad range of observational measurement systems have been developed to assess physical functioning, such as the Sorenson back extension test (Harding et al., 1994), the sit-to-stand (the number of times an individual can move from a seated to a standing position in a 1 min time period), and the timed walk (how long it takes an individual to walk a certain distance such as 10 metres, or how far a person walks in a certain time period such as 2 or 6 min). These measures are administered using standardized conditions (often in a gym).

Observational and performance measures have been used surprisingly little in paediatric pain populations. In juvenile arthritis, standardized measures of fitness such as grip strength have been shown to correlate with self-report measures of physical function (Wessel et al., 1999). Standardized back muscle endurance measures have also been used with youth who have chronic musculoskeletal pain (O’Sullivan et al., 2011). Only one study of which we are aware has utilized performance measures to assess intervention outcome. In this study, improvements were found in adolescents with chronic pain on sit-to-stand and timed walk measures following an intensive interdisciplinary physical therapy and psychological treatment day hospital programme (Eccleston et al., 2003). Observational measures have the advantage of reduced subjectivity compared to self-report. Disadvantages of these measures include some burden in terms of additional time needed to administer the tasks, as well as necessitating training research or clinical staff. At this time, however, the most significant limitation is the lack of available data on any particular performance-based measure of physical function in children with painful conditions.

Physical activity, a specific domain of overall physical function, can be measured via self-report, proxy-report, or via activity monitors that capture physical activity in daily life such as pedometers or actigraphic monitoring devices. This domain of physical function is relevant for acute and chronic pain conditions, as pain is often characterized by limitations in movement and withdrawal from physical activities (Sullivan et al., 2008). Additionally, low levels of physical activity have been associated with the development of pain in adolescents (Skoffer et al., 2008).

Several self- and proxy-report measurement systems, including diary and recall reports, have been developed for assessment of physical activity in healthy adolescents (see review by Sirard et al., 2001). Examples of available measures include the International Physical Activity Questionnaire (IPAQ), which shows adequate reliability and has been validated with objective measures of energy expenditure in adolescents (Arvidsson et al., 2005). Brief physical activity screening measures are also available for use with adolescents (e.g. Prochaska et al., 2001). These measures typically prompt the adolescent to recall a specific time period (e.g. the last 7 days) and estimate the amount of time spent in various levels of activity (e.g. vigorous enough to sweat).

Despite the availability of self-report measures of physical activity, there are few published studies examining these measures in youth with acute or chronic pain. Among youth with musculoskeletal pain, diary reports of physical activity demonstrate less time spent in physical activity compared to healthy controls (Kashikar-Zuck et al., 2010; Tarakci et al., 2011). Similarly, youth with nonspecific musculoskeletal pain reported lower levels of activity using the Youth Activity Questionnaire (Ainsworth et al., 1993), compared to healthy youth matched for age and sex (O’Sullivan et al., 2011). While there are limitations to self-report of physical activity in children and adolescents, particularly among those with chronic pain (Kashikar-Zuck et al., 2010), additional research in this area would provide more information about the impact of pain on physical activity and to understanding of how these measures perform in pain populations.

Activity monitoring or actigraphy typically uses wrist- or hip-mounted accelerometers to track an individual’s movements in daily life activities, which may be converted to caloric expenditure. These measures of physical activity provide proxy data on actual movement patterns and have been used in a few studies of adolescents with chronic pain. Two studies have compared adolescents with mixed chronic pain problems (headaches, abdominal pain, and musculoskeletal pain) to matched healthy controls on actigraphic measures of daytime activity, and found lower activity levels and more time spent in sedentary activity among youth with chronic pain (Long et al., 2008; Wilson et al., 2012). In one study of adolescents with juvenile primary fibromyalgia syndrome, between-subject variability in physical activity levels were high; among these untreated youth, higher activity was associated with significantly lower levels of self-reported pain intensity, depressive symptoms, and functional disability (Kashikar-Zuck et al., 2010). Overall, actigraphic measures have been moderately correlated with self-reports of physical functioning among youth with chronic pain. There are various monitoring devices and computer programs that have been developed for research purposes and can be used to assess physical activity (see review of activity monitoring in children and adolescents by Bjornson et al. (2004)). To our knowledge, no published studies have examined physical activity in children experiencing acute or postoperative pain, or in association with acute or chronic pain management or treatment. There has been too little empirical work performed to date to recommend specific objective measures of functional assessment in youth with pain.

Outcomes measurement

Enhancing children’s functioning is often the primary treatment goal for youth with chronic pain. Re-assessment of HRQOL and function is important for understanding the impact of treatments, both on individuals and on groups. To date, the majority of studies have used HRQOL and function to describe paediatric medical and pain populations, however, there have been limited studies using these tools as outcome measurements after intervention. There are a few paediatric studies that utilized HRQOL as an outcome measure after pharmacologic intervention for rheumatologic conditions (Ruperto et al., 2010). With respect to psychological intervention, similarly, few randomized controlled trials of psychological treatments have measured change in children’s physical or role functioning from pre- to post-treatment (Palermo et al., 2010). While psychological interventions are largely found to be effective in reducing pain intensity, a significant gap remains in our knowledge of the effects of psychological interventions on physical and role functioning, especially in randomized controlled trials.

Given the broad range of assessment measures and approaches available, clinicians must make choices to prioritize what information about HRQOL and functioning will be useful to collect when evaluating an individual child with chronic pain and his or her family. Interview and questionnaire reports of HRQOL and physical function should ideally be obtained from self-report if the child is cognitively and physically able to provide it. Parent or caregiver proxy reports can provide additional information on parent perception of the HRQOL and functioning of the child. As there is imperfect agreement between self and proxy report (Varni et al., 2007b), proxy report should be used to supplement assessment of the child, not to replace information provided by self-report. Parent report has some unique correlates; for example, parental perception of HRQOL (rather than child perception) and function has been shown to be associated with children’s healthcare utilization (Campo et al., 2002; Janicke et al., 2001).

There are several new developments in measurement of physical function. Most notably, considerable work has been invested in the Patient Reported Outcomes Measurement Information System (PROMIS) funded by the National Institutes of Health. At present, preliminary validation has been conducted on a new measure of pain interference in children (Varni et al., 2010) that can be administered via self-report or computerized adaptive testing. Pain and function are areas identified by PROMIS where ongoing work will continue to advance assessment of health related outcomes in the paediatric pain population.

Best available evidence to guide current use of assessment tools

A wide variety of methods have been used to measure HRQOL, physical function, physical activity, and physical fitness. Clear guidelines are not presently available for measurement of physical function domains in the paediatric pain population. Further research on psychometric properties of measures and comparative analysis of measurement methods is needed in this area to establish these guidelines. We have made recommendations to guide the use of instruments for measurement of HRQOL and physical function in paediatric pain populations in Table 41.3. We have chosen not to recommend measures within specific pain conditions given the small available evidence base within any one condition. In addition, due to the limited available data on objective and performance-based measures in children with pain, it is premature to recommend their routine use.

Table 41.3 Recommendations for assessment of HRQOL and physical function in children and adolescents with painful conditions

Assessment

Name of measure (acronym)

Reference

Primary scale content

HRQOL–generic measures

Child Health Questionnaire (CHQ)

Landgraf et al. (1996)

Physical functioning, role functioning: emotional/behavioural, role functioning: physical, bodily pain, general behaviour, mental health, self-esteem, general health perceptions, parental impact: emotional, parental impact: time, family activities, family cohesion, change in health

Multidimensional pain-specific measures

Pediatric Quality of Life Inventory 4.0 (PedsQL4.0)

Varni et al. (1999)

Physical, psychological, social, and school functioning

Pain Experience Questionnaire (PEQ)

Hermann et al. (2008)

Pain severity, pain related interference, affective distress, perceived social support

Bath Adolescent Pain Questionnaire (BAPQ)

Eccleston et al. (2005)

Physical functioning, social functioning, depression, general anxiety, pain-specific anxiety, family functioning, and developmental functioning

Functional Impairment

Functional Disability Inventory (FDI)

Walker and Greene (1991)

Physical and psychosocial limitations due to pain

Child Activity Limitations Interview (CALI)

Palermo et al. (2004)

Activity restrictions in daily, personal, recreational, physical, and social activities due to pain

Conclusion

Collectively, information obtained from the clinical interview, questionnaires, and observational measures allow for global evaluation of HRQOL and physical function in the child with pain. Due to the availability of numerous measures, the choice of instrument(s) needs to be guided by measurement quality of the instruments and the goals set by and the clinician and/or the researcher. In examination of the wide range of available instruments, we have identified several research priorities:

  • Validation of HRQOL and physical function measures for use in children with pain conditions requires further attention. At this time it is not clear whether currently available measures are appropriate in the context of acute pain or whether adaptations to existing measures or the development of new measures will be needed.

  • To extend the clinical utility of measures, additional work is required to establish the clinical meaning of changes in scores for individuals. The development of cut-points to indicate clinical severity of the limitation in HRQOL or physical function may be useful for certain measures. For an example, see Kashikar-Zuck et al. (2011) concerning clinical utility of the FDI.

  • There is limited information on any objective or performance-based measure of physical function or activity in children with pain. Additional work is needed with performance-based tasks (e.g. timed walk), activity devices (e.g. actigraphy), and with physical fitness measures (e.g. grip strength) to develop normative data in paediatric pain populations and understand relative levels of impairment. Moreover, the relationship between subjective measures (questionnaires) and objective performance measures requires specific consideration.

In summary, HRQOL and physical functioning instruments may allow for objective assessment of the global functioning of the child, enable standardized comparison within and across painful medical populations, and provide longitudinal monitoring of outcomes over time and in response to intervention. Applications of HRQOL measurement reviewed by Varni et al. (2005) suggest that standardized measures may improve communication between the health care provider and the child and family as well as improve child and parent satisfaction by actively eliciting information about the child’s functioning. Thus, in order to optimize the use of these measures, further research into the potential benefits are needed in paediatric pain populations.

Case example

Kristy is a 16-year-old female who began experiencing low back pain about 2 years ago. Prior to pain onset, she participated in softball and volleyball at her school, but has now given up these sports activities due to pain. Kristy has missed an increasing number of school days in the past year, which she attributes to worsening pain from sitting for long periods. Her parents report that she is more sedentary than she used to be, spending much time lying down at home. They also note that she often refuses to do household chores that involve lifting. Kristy has begun to avoid interactions with her friends because they often choose activities that involve walking long distances. Currently, Kristy reports that she can go on walks on days when her pain is less intense, but only walks for 20 to 30 min once or twice a week. She also experiences increased pain when walking up and down stairs, and when her pain is severe she will sleep on the couch at night to avoid walking upstairs to her bedroom. Her night-time sleep has been disrupted for the past several months and she is often fatigued during the day.

Assessment that includes a combination of interview questions, standardized measures of HRQOL and physical function in conjunction with performance measures may provide clinically relevant information. The clinical interview could be used to assess in detail Kristy’s participation in physical and role activities (e.g. doing family chores at home, attending school, doing things with friends). Specific interview probes could be used with Kristy and her parent(s) to understand Kristy’s expectations for activity and role participation and what her individual values are around functional activities. A measure of overall HRQOL, such as the PedsQL 4.0, would provide information about perception of overall health impact, while a measure of pain-related activity limitations or disability such as the FDI or the CALI-21 would provide information about pain impact on functioning that may identify specific intervention targets or goals. Because Kristy reports trouble walking, and a timed 10-metre walk would establish a baseline performance that could be used throughout treatment to assess progress. Additional measures of performance and fitness might be chosen by a physical or occupational therapist.

These measures can provide valuable information to assess Kristy on an individual basis, and to also compare the level of impairment secondary to pain in comparison to other adolescents with pain conditions. Furthermore, the measures can also allow the clinician to track Kristy’s progress over time to objectively monitor her level of functioning and assess for changes in impairment if treatment is undertaken.

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                                                                                                                                                        Online supplementary materials

                                                                                                                                                        Table 41.4 Interview probes for assessing physical functioning.

                                                                                                                                                        Table 42.4: Interview probes for assessing physical functioning

                                                                                                                                                        Domain

                                                                                                                                                        Interview Probe

                                                                                                                                                        Daily living

                                                                                                                                                        • • Tell me about how you are able to walk and get around.

                                                                                                                                                        • • Do you eat meals regularly?

                                                                                                                                                        • • Are you able to get yourself ready and take care of your body?

                                                                                                                                                        School participation

                                                                                                                                                        • • How often do you attend school?

                                                                                                                                                        • • Do you stay at school for the whole day?

                                                                                                                                                        • • What is it like to stay on top of homework?

                                                                                                                                                        Physical activities

                                                                                                                                                        • • Do you participate in hobbies, like clubs or after-school activities?

                                                                                                                                                        • • Do you play sports?

                                                                                                                                                        • • Does pain stop you from doing physically active things (like running or doing gym class)?

                                                                                                                                                        Activities with peers

                                                                                                                                                        • • How often do you spend time with friends?

                                                                                                                                                        • • What do you do with friends?

                                                                                                                                                        Activities with family

                                                                                                                                                        • • Do you spend time with your parents or siblings?

                                                                                                                                                        • • What activities do you do with your family?

                                                                                                                                                        Reproduced from Tonya M. Palermo, Cognitive-Behavioral Therapy for Chronic Pain in Children and Adolescents, Table 4.4, p.50, Oxford University Press, Inc., New York, USA, Copyright © 2012

                                                                                                                                                        Reproduced from Tonya M. Palermo, Cognitive-Behavioral Therapy for Chronic Pain in Children and Adolescents, Table 4.4, p.50, Oxford University Press, Inc., New York, USA, Copyright © 2012, by permission of Oxford University Press.

                                                                                                                                                        Table 41.5 Interview probes for assessing sleep problems.

                                                                                                                                                        Table 42.5: Interview probes for assessing sleep problems

                                                                                                                                                        Domain

                                                                                                                                                        Interview Probe

                                                                                                                                                        Bedtime/wake-up time

                                                                                                                                                        • • What time do you usually go to bed? School nights? Weekends?

                                                                                                                                                        • • What time do you usually wake up? School nights? Weekends?

                                                                                                                                                        Sleep latency/disturbances

                                                                                                                                                        • • Once you’re in bed, how much time does it take you to fall asleep?

                                                                                                                                                        • • Do you ever wake up during the night? How many times a night?

                                                                                                                                                        • • How long does it take you to get back to sleep?

                                                                                                                                                        Sleep quality

                                                                                                                                                        • • Do you think that you sleep well?

                                                                                                                                                        • • Do you think that you sleep enough each night?

                                                                                                                                                        • • Do you feel rested when you wake up?

                                                                                                                                                        Daytime sleepiness

                                                                                                                                                        • • Do you feel like you have enough energy to get through the day?

                                                                                                                                                        • • Do you feel sleepy during the day?

                                                                                                                                                        • • Do you ever take naps? How oft en and how long are they?

                                                                                                                                                        Sleep hygiene

                                                                                                                                                        • • What do you do before you go to bed?

                                                                                                                                                        • • Do you use a computer, cell phone, TV, or iPod before bed?

                                                                                                                                                        • • Do you do things on your bed during the day, like homework or talking to friends?

                                                                                                                                                        Family history

                                                                                                                                                        • • Has anyone in your family ever had sleep problems?

                                                                                                                                                        • • What were they, and how were they treated?

                                                                                                                                                        Medicines

                                                                                                                                                        • • Do you take medicine to help yourself sleep?

                                                                                                                                                        • • What do you take and how oft en?

                                                                                                                                                        Reproduced from Tonya M. Palermo, Cognitive-Behavioral Therapy for Chronic Pain in Children and Adolescents, Table 4.6, p.52, Oxford University Press, Inc., New York, USA, Copyright © 2012

                                                                                                                                                        Reproduced from Tonya M. Palermo, Cognitive-Behavioral Therapy for Chronic Pain in Children and Adolescents, Table 4.6, p.52, Oxford University Press, Inc., New York, USA, Copyright © 2012, by permission of Oxford University Press.

                                                                                                                                                        Table 41.6 Interview probes for assessing family relationships.

                                                                                                                                                        Table 42.6: Interview probes for assessing family relationships

                                                                                                                                                        Domain

                                                                                                                                                        Interview Probe

                                                                                                                                                        Overall family function

                                                                                                                                                        • • How do you and your family usually get along?

                                                                                                                                                        • • Are there ever arguments or fights in your family? What are they about?

                                                                                                                                                        • • How often do you spend time with your parents or siblings?

                                                                                                                                                        • • What do you usually talk about?

                                                                                                                                                        • • What things do you do together?

                                                                                                                                                        Responses to pain complaints

                                                                                                                                                        • • When you have pain, do you tell people in your family?

                                                                                                                                                        • • Whom do you tell, and what do they say?

                                                                                                                                                        • • What happens when you tell them about your pain?

                                                                                                                                                        Pain management

                                                                                                                                                        • • Does someone in your family check with you to see if you have pain? How often do they do this?

                                                                                                                                                        • • When you have pain, what do you do?

                                                                                                                                                        • • When you have pain, what does your mom or dad do?

                                                                                                                                                        • • Do they check later to see if the pain is better or went away?

                                                                                                                                                        Impact of pain problem (for parents)

                                                                                                                                                        • • How have things in your family changed since your child started having pain?

                                                                                                                                                        • • Has this changed your daily schedule or your spouse’s?

                                                                                                                                                        • • Who is usually responsible for managing your child’s pain complaints, you or your spouse?

                                                                                                                                                        • • Do you have any concerns about your communication with your child or with your spouse?

                                                                                                                                                        • • Has dealing with the pain problem affected your relationship with your spouse?

                                                                                                                                                        Reproduced from Tonya M. Palermo, Cognitive-Behavioral Therapy for Chronic Pain in Children and Adolescents, Table 4.7, p.53, Oxford University Press, Inc., New York, USA, Copyright © 2012

                                                                                                                                                        Reproduced from Tonya M. Palermo, Cognitive-Behavioral Therapy for Chronic Pain in Children and Adolescents, Table 4.7, p.53, Oxford University Press, Inc., New York, USA, Copyright © 2012, by permission of Oxford University Press.