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Despite frequent targeting of health beliefs in pediatric chronic pain treatment interventions, there are currently no reliable and valid self-efficacy measures for children with chronic pain and their parents. The current study examined the psychometric properties of parent and child versions of a self-efficacy measure related to the child functioning normally when in pain. Pediatric pain patients, 9–18 years of age, and a caregiver completed questionnaires before an initial tertiary care clinic appointment. The 67 patients in our sample had an average of 1.7 pain locations, including abdominal pain (43.3%), headaches (50.7%), body pain (25.4%), back pain (23.9%), limb pain (20.9%), and/or chest pain (9.0%). Reliability for the new measures was excellent; the Cronbach's alpha was .89 for the 7 child items and .90 for the 7 parent items. Strong evidence for construct validity was also obtained as 23 of the 27 hypothesized correlations were confirmed. As predicted, parent and child ratings of increased self-efficacy for the child functioning normally when in pain were significantly correlated with each other, and to parent reports of fewer problems functioning due to physical or emotional problems; parent reports of fewer somatic, behavioral or emotional symptoms; parent reports of increased self-esteem, and unrelated to child pain, age and gender. Additionally, child ratings of increased self-efficacy were significantly correlated with child reports of increased self-esteem and fewer somatic symptoms. Replication with a larger sample size, more complex modeling, and prospective studies are indicated.

This study employed a mixed-method design to test sex-specific parent-child pain associations. Subjects were 179 chronic pain patients aged 11–19 years (mean = 14.34; 72% female) presenting for treatment at a multidisciplinary, tertiary clinic. Mothers and children completed questionnaires prior to their clinic visit, including measures of children’s pain, functioning and psychological characteristics. Mothers also reported on their own pain and psychological functioning. Interviews were conducted with a sub-sample of 34 mothers and children prior to the clinic visit and analyzed using a grounded theory approach. The quantitative data suggest stronger mother-daughter than mother-son pain relationships. The qualitative data suggest that girls’ pain and pain-related disability is related to an overly enmeshed mother-daughter relationship and the presence of maternal models of pain, while boys’ pain and disability is linked to male pain models and criticism and to maternal worry and solicitousness. Boys and girls appear to have developmentally incongruous levels of autonomy and conformity to maternal expectations. The mixed-method data suggest distinct trajectories through which mother and father involvement may be linked to chronic pain in adolescent boys and girls.

Anxiety sensitivity (AS), or the fear of anxiety sensations has been shown to independently predict poorer health-related quality of life (HRQOL) in adults with chronic pain. Specifically, AS was found to contribute to decrements in psychological well-being and social functioning but not to decrements in physical functioning. Existing studies have not examined the relationship between AS and HRQOL in children with chronic pain. The present study used multivariate regression analysis to test the association between AS and self-reported HRQOL in 87 children (62 girls; mean age = 14.4 years ± 2.3) presenting for treatment at a tertiary, multidisciplinary clinic specializing in pediatric chronic pain. After controlling for key sociodemographic and pain-related characteristics, higher AS was associated with poorer perceived general and mental health, greater impairment in family activities, lower self-esteem, increased behavior problems, and more social/academic limitations due to emotional problems. AS accounted for 4% – 28% of incremental variance in these HRQOL domains above and beyond the demographic and pain-related variables. However, AS was not significantly associated with physical functioning or with academic/social limitations due to physical health. Additional research is required to delineate possible mechanisms by which AS may influence certain aspects of children's HRQOL but not others.

Perspective

The present findings support the evaluation of AS in pediatric chronic pain patients as part of a comprehensive assessment battery. The links between AS and multiple HRQOL domains suggests that treatment components aimed at reducing AS may lead to enhanced psychosocial well-being in children with chronic pain.

Objectives

Obesity is associated with functional disability in adults with chronic pain, but less is known about obesity among youth with chronic pain. The purpose of this study was to 1) identify the prevalence of overweight and obesity in children and adolescents receiving treatment for chronic pain, and 2) examine associations between Body Mass Index (BMI), pain intensity, and activity limitations in this population.

Methods

Data was obtained from records of 118 patients, ages 8 to 18, seen in a multidisciplinary pediatric pain clinic. Information about age, gender, pain problem, duration and severity, medical diagnoses, medications, height and weight were collected from medical records and intake questionnaires. The CDC’s pediatric BMI calculator was used to obtain percentile and category (underweight, healthy weight, overweight, obese). Children and parents completed the Child Activity Limitations Interview-21 (CALI-21), a self-report measure of activity limitations.

Results

A significantly higher rate of overweight and obesity was observed among youth with chronic pain compared to a normative sample. BMI percentile was predictive of concurrent limitations in vigorous activities, according to parent report.

Discussion

BMI percentile and weight status may contribute to activity limitations among children and adolescents with chronic pain. Weight status is an important factor to consider in the context of treatment of chronic pain and disability in children and adolescents.

CAM therapies have become increasingly popular in pediatric populations. Yet, little is known about children's preferences for CAM. This study examined treatment preferences in chronic pediatric pain patients offered a choice of CAM therapies for their pain. Participants were 129 children (94 girls) (mean age = 14.5 years ± 2.4; range = 8–18 years) presenting at a multidisciplinary, tertiary clinic specializing in pediatric chronic pain. Bivariate and multivariate analyses were used to examine the relationships between CAM treatment preferences and patient's sociodemographic and clinical characteristics, as well as their self-reported level of functioning. Over 60% of patients elected to try at least one CAM approach for pain. The most popular CAM therapies were biofeedback, yoga and hypnosis; the least popular were art therapy and energy healing, with craniosacral, acupuncture and massage being intermediate. Patients with a diagnosis of fibromyalgia (80%) were the most likely to try CAM versus those with other pain diagnoses. In multivariate analyses, pain duration emerged as a significant predictor of CAM preferences. For mind-based approaches (i.e. hypnosis, biofeedback and art therapy), pain duration and limitations in family activities were both significant predictors. When given a choice of CAM therapies, this sample of children with chronic pain, irrespective of pain diagnosis, preferred non-invasive approaches that enhanced relaxation and increased somatic control. Longer duration of pain and greater impairment in functioning, particularly during family activities increased the likelihood that such patients agreed to engage in CAM treatments, especially those that were categorized as mind-based modalities.

Chronic or recurrent pain is a widespread health issue that affects a large proportion of the population, including adults and children. Family factors in the development of pain have received increasing attention of late as research has shown that pain tends to run in families, A burgeoning literature has also demonstrated the influence of parental factors in children’s responses to chronic and laboratory pain. This review attempts to integrate: first,) the literature documenting an association between parent and child pain both within the clinical chronic pain and laboratory pain literatures; and second,) research accounting for likely mechanisms explaining the parent-child pain association. To this end, we present a conceptual model that incorporates a number of parent and child specific characteristics, such as parental responses, coping and gender role socialization as well as broader socio-demographic factors such as parent and child age and sex, family functioning, socioeconomic status, and race/ethnicity. It is anticipated that consideration of such variables will lead to needed research exploring the mechanisms of parent-child pain relationships, and to interventions designed to prevent and ameliorate child pain sensitivity when it correlates with poor adaptation to pain.

Parent perceptions of and responses to pain have been identified as important factors in understanding pain-related disability among children and adolescents with chronic pain. The ability to “accept” chronic pain rather than focus on ways to avoid or control it has been linked to positive outcomes in chronic pain research. To examine parent beliefs about child acceptance of pain, the Chronic Pain Acceptance Questionnaire, parent report (CPAQ-P) was developed and administered to 195 parents of children with persistent pain evaluated in a multidisciplinary pain clinic. Analyses support the internal consistency of the CPAQ-P (α= .89) and one-month stability estimates were acceptable for the total scale score (α= .72) and results suggest some responsivity to change. Exploratory factor analysis identified a two-factor model with four items removed from the original 20-item measure. Confirmatory factor analysis strongly supported the modified version. For construct validity, parent beliefs about child acceptance were negatively correlated with parent pain catastrophizing and parent fear of pain. Greater acceptance was also negatively associated protective parent responses to pain. These results support the CPAQ-P as a promising measure for assessing parent beliefs about child acceptance of pain and reinforce the importance of the social context and parental influence on child functioning.

BACKGROUND:

Chronic pain in childhood is increasingly recognized as a significant clinical problem. Best-practice management of pediatric chronic pain in a multidisciplinary pain clinic involves a variety of treatment modalities. It is important that parents of children treated in these settings understand the different treatment options available for their children. By involving parents more effectively, care providers may more efficiently address unmet treatment needs and improve tailoring of treatment programs aimed at increasing function, reducing pain-related disability and improving quality of life.

OBJECTIVES:

To explore the expectations held by parents for their first visit to a pediatric multidisciplinary pain clinic.

METHODS:

Fourteen parents completed a paper-based survey exploring their expectations immediately before their first visit to a multidisciplinary pediatric pain clinic in a tertiary care children’s hospital.

RESULTS:

Responses from parents suggest a clear desire for information about the causes of their child’s pain, treatment options available at the pain clinic, effective strategies to enhance children’s ability to cope with pain, and the effects of pain on both body and mood. Most parents rated the various treatment options as important for their child. All parents indicated it was very important to have the pain team ‘be there’ for them.

CONCLUSIONS:

These findings indicate that parents want more information about chronic pain and treatment options. Pediatric chronic pain clinics have the ability to assist children with chronic pain and their families considerably by providing information about chronic pain and the various treatment options available to them.

The Functional Disability Inventory (FDI; Walker LS, Greene JW. The functional disability inventory: measuring a neglected dimension of child health status. J Pediatr Psychol 1991;16:39–58) assesses activity limitations in children and adolescents with a variety of pediatric conditions. This study evaluated the psychometric properties of the FDI in pediatric pain patients. Participants included 596 patients with chronic abdominal pain, ages 8–17, and a subset of their parents (n = 151) who completed the FDI and measures of pain, limitations in school activities, and somatic and depressive symptoms at a clinic visit. Test–retest reliability was high at 2 weeks (child report, .74; parent-report, .64) and moderate at 3 months (child report, .48; parent report, .39). Internal consistency reliability was excellent, ranging from .86 to .91. Validity was supported by significant correlations of child- and parent-report FDI scores with measures of school-related disability, pain, and somatic symptoms. Study results add to a growing body of empirical literature supporting the reliability and validity of the FDI for functional assessment of pediatric patients with chronic pain.

Chronic and recurrent pain is experienced by many children and adolescents. Treatment of chronic pain using a multidisciplinary approach has been found to be effective for treatment of chronic pain. Parent satisfaction with treatment and treatment providers highly correlates to children's treatment adherence. Parents of children treated at a multidisciplinary chronic pain clinic were interviewed following their initial appointment. Parents reported high satisfaction with treatment team members and with the treatment plan. Parents also reported appreciation of multidisciplinary structure, the high level of expertise of the team members, and the team members' genuine interest in treating their children. This increase in satisfaction when compared to previous treatment is important since increases in satisfaction may correlate with a reduction in experiences of chronic pain. Parents reported high satisfaction with interactions with treatment team members and with the treatment plan provided for their children. Parents had appreciation of multidisciplinary team structure and the high level of expertise of the team members. This increase in satisfaction when compared to treatment from previous providers is important since increases in satisfaction may correlate with an increase in children's treatment adherence and a reduction in experiences of chronic pain.

Background

Few studies have focused on identifying predictors of medical consultation for pain in healthy children and adolescents.

Objective

This investigation sought to identify parent and child laboratory and non-laboratory predictors of pediatric healthcare utilization for pain problems.

Study group

Participants were 210 healthy children and adolescents (102 girls), aged 8–17 years who took part in a laboratory pain session.

Methods

Three months after the laboratory session, participants were contacted by telephone to ascertain whether they had experienced pain and whether they had seen a healthcare professional for pain. Zero-order correlations among sociodemographics, child laboratory pain responses, parent physical/mental health status and medical consultation for pain were conducted to identify relevant correlates of pediatric healthcare utilization; these correlates were subjected to multivariate analyses.

Results

Bivariate analyses indicated that higher anticipated pain and bother for the cold pressor task, as well as poorer parent physical health status, were associated with pediatric medical consultation for pain, but only among girls. Sequential logistic regression analyses controlling for child age indicated that only parent physical health status, not the laboratory indicators, significantly predicted healthcare consultation for pain among girls. No parent or child correlates of care-seeking for pain emerged for boys.

Conclusion

The findings suggest that parents’ perceived physical health plays a role in determining whether medical care is sought for pain complaints in healthy girls. These results suggest that interventions to assist parents in managing their own physical health problems may lead to reductions in medical consultation for girls’ pain.

Previous research has established links between parent and child pain. Yet little is known about sex-specific parent-child pain relationships in a non-clinical population. A sample of 186 children aged 8–18 years (49% female) provided information on maternal and self bodily-pain, assessed by asking children about the presence and location of bodily pain experienced. Children also completed three laboratory pain tasks and reported on cold pressor pain intensity, pressure pain intensity and heat pain intensity. The presence of child-reported maternal pain was consistently correlated with daughters’ bodily and laboratory pain, but not with sons’ pain in bivariate analyses. Multivariate analyses controlling for child age and maternal psychological distress indicated that children of mothers with bodily pain reported more total bodily pain sites as well as greater pressure and cold pain intensity, relative to children of mothers without bodily pain. For cold pain intensity, these results differed for boys vs. girls, in that daughters reporting maternal pain evidenced significantly higher cold pain intensity compared to daughters not reporting maternal pain. No such differences were found for boys. The findings suggest that children’s perceptions of maternal pain may play a role in influencing children’s own experience of pain and that maternal pain models may affect boys and girls differently.

Solicitous parental responses to stomach aches may perpetuate chronic abdominal pain in children. Discussing these issues in clinical practice is difficult as parents feel misunderstood and blamed for their child’s pain. Focusing on parental worries and beliefs that motivate solicitous responses may be better accepted.

Objectives

Our aim was to determine parental fears, worries and beliefs about their child’s chronic abdominal pain that influence parental responses to child’s pain.

Methods

In two studies, a large online sample and a smaller community sample consisting of parents with children who suffer from abdominal pain, we developed and evaluated a self-report questionnaire to assess parental Worries and Beliefs about Abdominal Pain (WAP).

Results

Principal component analysis identified four subscales: (1) Pain-is-Real; (2) Desire for Care; (3) Worry about Coping; and (4) Exacerbating Factors. The WAP is easily understood and possesses adequate initial reliability (Cronbach alphas of .7–.9) and shows good initial validity (i.e., families who consulted a physician for their child’s pain scored higher on the WAP than families who did not consult a physician and the WAP correlates with parental reactions to the child’s pain).

Conclusions

Discussing parents’ fears and worries about their children’s chronic abdominal pain may facilitate discussions of social learning of gastrointestinal illness behavior.

Objectives: To examine whether an association exists between parent and child pain, and, if so, whether this relationship persists after adjusting for psychosocial difficulties in the child.

Methods: 1326 schoolchildren took part in a questionnaire based, cross sectional survey. Parents of study participants were sent a postal questionnaire. Occurrence of body pain was ascertained using blank body manikins and, in children, psychosocial factors were assessed using the Strengths and Difficulties Questionnaire. Three child-parent pain relationships were examined: any child pain with any parental pain or with parental widespread pain; and child low back pain with parental low back pain.

Results: The risk of child pain associated with parental reporting of pain was minor, and non-significant. Even when both parents reported widespread pain, the relative risk of pain in the child, after adjusting for age and psychosocial difficulties, was 1.2 (95% CI 0.5 to 3.2).

Conclusions: Parental pain is not a risk for child pain. Pain behaviour is not learned. Rather, child pain is probably attributable to individual factors and the social environment.

Background

Previous pediatric studies have observed a cross-informant variance in patient self-reported health-related quality of life (HRQoL) versus parent proxy-reported HRQoL. This study assessed in older children and adolescents with a variety of chronic pain conditions: 1) the consistency and agreement between pediatric patients’ self-report and their parents’ proxy-report of their child’s HRQoL; 2) whether this patient-parent agreement is dependent on additional demographic and clinical factors; and 3) the relationship between pediatric patient HRQoL and parental reported HRQoL.

Methods

The 99 enrolled patients (mean age 13.2 years, 71% female, 81% Caucasian) and an accompanying parent completed the PedsQLTM 4.0 and 36-Item Short-Form Health Survey Version 2 (SF-36v2) at the time of their initial appointment in a pediatric chronic pain medicine clinic. Patients’ and parents’ total, physical, and psychosocial HRQoL scores were analyzed via an intra-class correlation coefficient, Spearman’s correlation coefficient, Wilcoxon signed rank test, and Bland-Altman plot. A multivariable linear regression model was used to evaluate the association between clinical and demographic variables and the difference in patient and proxy scores for the Total Scale Score on the PedsQL™.

Results

With the exception of the psychosocial health domain, there were no statistically significant differences between pediatric patients’ self-report and their parents’ proxy-report of their child’s HRQoL. However, clinically significant patient-parent variation in pediatric HRQoL was observed. Differences in patient-parent proxy PedsQL™ Total Scale Score Scores were not significantly associated with patient age, gender, race, intensity and duration of patient’s pain, household income, parental marital status, and the parent’s own HRQoL on the SF-36v2. No significant relationship existed among patients’ self-reported HRQoL (PedsQL™), parental proxy-reports of the child’s HRQoL, and parents’ own self-reported HRQoL on the SF-36v2.

Conclusions

We observed clinically significant variation between pediatric chronic pain patients’ self-reports and their parents’ proxy-reports of their child’s HRQoL. While whenever possible the pediatric chronic pain patient’s own perspective should be directly solicited, equal attention and merit should be given to the parent’s proxy-report of HRQoL. To do otherwise will obviate the opportunity to use any discordance as the basis for a therapeutic discussion about the contributing dynamic with in parent-child dyad.

This paper examines how clinicians promote pediatric patients’ symptom accounts at the beginning of visits in three pediatric tertiary care clinics at a university hospital in the US: pain, gastroenterology and neurology. Quantitative and qualitative data were collected for 69 patient-parent pairs, including videotaped intake visits. Two forms of child account promotion, together with their corresponding distribution across clinics, were identified: (1) Epistemic prefaces were used to upgrade the patient’s epistemic status and to establish the child as primary informant; and, (2) non-focused questioning was used to permit children latitude in the formulation of symptoms and experiences. In general, epistemic prefaces were characteristic of the gastroenterology and neurology visits, while non-focused questioning was found overwhelmingly in the pain encounters.

Gender-based differences in pain epidemiology, pain threshold, attitudes toward pain management, coping styles and social roles are well described, yet little is known about the chronic pain experience in women or the role race plays. A retrospective analysis of self-reported data using a secondary clinical database was performed to elucidate the relationship between race and pain severity, depression, physical disability, posttraumatic stress disorder (PTSD) as well as affective distress in women with chronic pain. White (n=1,088) and black (n=104) adult women were compared based on their responses to the McGill Pain Questionnaire, Beck Depression Inventory, Pain Disability Index, Posttraumatic Chronic Pain Test and items from the West-Haven Yale Multidisciplinary Pain Inventory. After accounting for sociodemographic, medical, psychological and physical confounders, there was no significant race effect for pain severity or affective distress. However, black women with chronic pain experience more physical impairments than white women with chronic pain (beta = 4.622; p<0.005). Except for the family/home responsibilities, similar differences were found on all PDI subscales. We also found that disability mediates the race-depression relationship such that black women are comparatively more vulnerable to depression as a result of higher disability. Due to the economic, social and emotional impact that disability has on women with chronic pain and their families, these findings have significant implications for chronic pain research as well as its management in black women.

This paper uses a mixed-methods approach to examine the impact of pain-associated functioning limitations on children's lives and the strategies they develop to try to continue functioning. Forty-five children ages 10-18 completed standardized questionnaires and participated in semistructured interviews prior to intake at a university-based tertiary clinic specializing in the treatment of pediatric chronic pain. All the children reported that pain limited their functioning in everyday activities and that these limitations caused them frustration and distress. Qualitative analysis identified three distinct functioning patterns or groups, which were designated as Adaptive, Passive, and Stressed. The groups did not differ significantly in demographics or clinical pain characteristics. Adaptive children continued to participate in many activities and were more likely to realize that focusing on pain would heighten their perception of pain. Children in this group reported more effective use of distraction and of other independently developed strategies to continue functioning. Passive children had given up most activities, tended to use passive distraction when in pain, and were more likely to feel isolated and different from peers. Stressed children described themselves as continuing to function, but were highly focused on their pain and the difficulties of living with it. The qualitative groupings were supported by quantitative findings that Stressed children reported a higher degree of social anxiety than did Passive children and were more likely than the other groups to report experiencing pain throughout the day. Finally, Adaptive children were rated by their parents as having better overall health compared to Passive children.

The prevalence of persistent and recurrent pain among children and adolescents has important economic, social and psychological repercussions. The impact of chronic pain in children extends beyond the affected individuals – more than one-third of parents of children with pain report clinically significant levels of stress and depression. Although many pain-related psychological factors have been examined in chronic pediatric pain populations, much of that research involved clinical samples. Community-based research, however, is necessary to uncover the way pain is experienced by youth, regardless of whether treatment is sought or is available. This study aimed to ascertain the lifetime prevalence of pediatric pain in a Canadian community-based sample, and to explore age and sex differences in children who report persistent pain and those who do not with respect to several constructs believed to play important roles in the development and maintenance of persistent pain.

BACKGROUND:

Very few studies have investigated the psychological factors associated with the pain experiences of children and adolescents in community samples.

OBJECTIVES:

To examine the lifetime prevalence of, and psychological variables associated with, persistent pain in a community sample of children and adolescents, and to explore differences according to sex, age and pain history.

METHODS:

Participants completed the Childhood Anxiety Sensitivity Index (CASI), the Child Pain Anxiety Symptoms Scale (CPASS), the Multidimensional Anxiety Scale for Children-10 (MASC-10), the Pain Catastrophizing Scale for Children (PCS-C) and a pain history questionnaire that assessed chronicity and pain frequency. After research ethics board approval, informed consent/assent was obtained from 1022 individuals recruited to participate in a study conducted at the Ontario Science Centre (Toronto, Ontario).

RESULTS:

Of the 1006 participants (54% female, mean [± SD] age 11.6±2.7 years) who provided complete data, 27% reported having experienced pain that lasted for three months or longer. A 2×2×2 (pain history, age and sex) multivariate ANOVA was conducted, with the total scores on the CASI, the CPASS, the MASC-10 and the PCS-C as dependent variables. Girls with a history of persistent pain expressed higher levels of anxiety sensitivity (P<0.001) and pain catastrophizing (P<0.001) than both girls without a pain history and boys regardless of pain history. This same pattern of results was found for anxiety and pain anxiety in the older, but not the younger, age group.

CONCLUSIONS:

Boys and girls appear to differ in terms of how age and pain history relate to the expression of pain-related psychological variables. Given the prevalence of persistent pain found in the study, more research is needed regarding the developmental implications of persistent pain in childhood and adolescence.

Previous research has established links between parent and child pain. However, little is known about sex-specific parent-child pain relationships in a nonclinical population. A sample of 186 children aged eight to 18 years (49% female) provided information on maternal and self bodily pain, assessed by asking children about the presence and location of bodily pain experienced. Children also completed three laboratory pain tasks and reported on cold pressor pain intensity, pressure pain intensity and heat pain intensity. The presence of child-reported maternal pain was consistently correlated with daughters’ bodily and laboratory pain, but not with sons’ pain in bivariate analyses. Multivariate analyses controlling for child age and maternal psychological distress indicated that children of mothers with bodily pain reported more total bodily pain sites as well as greater pressure and cold pain intensity, relative to children of mothers without bodily pain. For cold pain intensity, these results differed for boys versus girls, in that daughters reporting maternal pain evidenced significantly higher cold pain intensity compared with daughters not reporting maternal pain. No such differences were found for boys. The findings suggest that children’s perceptions of maternal pain may play a role in influencing children’s own experience of pain, and that maternal pain models may affect boys and girls differently.

The Child Activity Limitations Interview (CALI) is a measure designed to assess functional impairment due to chronic pain in school-age children. In this study, we present a self-report questionnaire version of the CALI (the CALI-21) that extends the original interview measure. The purpose of the current study was to provide internal consistency, cross-informant reliability and construct validity of the CALI-21 on a clinical sample of children and adolescents with chronic pain conditions. One hundred fifty-five children and adolescents (65 males, 90 females; ages 8–18 years, M = 14.31, SD =2.45) with chronic pain completed questionnaires as part of their clinic intake procedures at their consultation visit in a pediatric pain management clinic. An exploratory factor analysis was conducted to measure latent constructs within the broader domain of functional impairment. Results of the exploratory factor analysis yielded two factors representing limitation in Active and Routine activities on both parent and child report. Parent and child total CALI scores correlated with measures of pain intensity, however, different patterns of correlations emerged between age, pain intensity, depressive symptoms, and the Active and Routine factors. The CALI-21 showed good internal consistency, high cross-informant reliability, and demonstrated construct validity. The CALI-21 provides increased flexibility via the questionnaire format in the assessment of pain-related activity limitations in children. Factor analysis extends information about specific types of activity limitations experienced by children.

Objectives

To examine associations between pain, functional outcomes, and sleep disturbances in children with chronic pain, specifically juvenile idiopathic arthritis (JIA), sickle cell disease (SCD), and headache (HA). Sleep disturbances were tested as a risk factor for increased functional disability and decreased health-related quality of life (HRQOL).

Methods

One hundred children (JIA n = 30, SCD n = 26, HA n = 44; 8–12 years; 56% female) and their caregivers participated. Children completed questionnaires regarding pain, depression, and functional disability. Caregivers completed questionnaires regarding sociodemographics, child sleep habits, functional disability, and HRQOL.

Results

Levels of overall sleep disturbances were above the clinical cutoff for 53% of children with chronic pain. Sleep disturbances predicted lower physical HRQOL and higher functional disability, according to parent report.

Conclusions

Sleep disturbances are common and associated with daytime functioning in school-age children with chronic pain, suggesting that assessment and treatment of sleep problems is clinically relevant.

Objective. Juvenile Idiopathic Arthritis (JIA) is the most common chronic pediatric rheumatic disease. It is recognized that only reliance on clinical signs of disease outcome is inadequate for understanding the impact of illness and its treatment on child's life and functioning. There is a need for a multidisciplinary and holistic approach to children with arthritis which considers both physical and emotional functioning. This study investigated the psychosocial functioning of children and adolescent with JIA and the disease-related changes in their family. Methods. The sample consisted of 33 hospitalized patients, aged 6–16 years. Both parents and the children were given a number of questionnaire to fill out. Clinical information was extracted from the interviews. Results. Self-reported psychological functioning (depression, anxiety, and behavior) was not different from the normal population; however significant psychological suffering was detected by the clinical interview. Conclusions. Children and adolescents with JIA do not show overt psychopathology by structured assessment; nevertheless a more clinically oriented holistic approach confirms JIA as a disrupting event causing relevant changes in the quality of life of the affected families.

OBJECTIVE--To determine the sociodemographic and motivational characteristics of parents who volunteer their children for clinical research. DESIGN--A questionnaire was administered to parents who volunteered their children for a randomised, double blind, placebo controlled trial of a drug to treat asthma and to a control group of parents whose children were eligible for the trial but had refused the invitation. SETTING--A children's hospital in Australia. SUBJECTS--68 Parents who had volunteered their children and 42 who had not; a response rate of 94% and 70%, respectively. MAIN OUTCOME MEASURES--Responses of parents to questionnaire designed to assess their perceptions, attitudes, and health seeking behaviour as well as sociodemographic data. RESULTS--Volunteering parents were less well educated with only 15% (10/68) of mothers and 16% (11/68) and of fathers having had a tertiary or university education compared with 26% (11/42) of mothers and 45% (19/42) in the non-volunteering group. Fewer volunteering parents had professional or administrative jobs than did non-volunteering parents (mothers 6% (4/68); fathers 9% (6/68) v mothers 14% (6/42); fathers 31% (13/42)). Volunteering parents had less social support, and they displayed greater health seeking behaviour and consumed more habit forming substances. They were motivated by a desire to help others and to contribute to medical research, but they were also searching for more information and better ways to help their own children. CONCLUSION--Parents who volunteer their children for medical research are significantly more socially disadvantaged and emotionally vulnerable.

BACKGROUND—The informed consent procedure plays a central role in randomised controlled trials but has only been explored in a few studies on children.
AIM—To assess the quality of the informed consent process in a paediatric setting.
METHODS—A questionnaire was sent to parents who volunteered their child (230 children) for a randomised, double blind, placebo controlled trial of ibuprofen syrup to prevent recurrent febrile seizures.
RESULTS—181 (79%) parents responded. On average, 73% of parents were aware of the major study characteristics. A few had difficulty understanding the information provided. Major factors in parents granting approval were the contribution to clinical science (51%) and benefit to the child (32%). Sociodemographic status did not influence initial participation but west European origin of the father was associated with willingness to participate in future trials. 89% of participants felt positive about the informed consent procedure; however, 25% stated that they felt obliged to participate. Although their reasons for granting approval and their evaluation of the informed consent procedure did not differ, relatively more were hesitant about participating in future. Parents appreciated the investigator being on call 24 hours a day (38%) and the extra medical care and information provided (37%) as advantages of participation. Disadvantages were mainly the time consuming aspects and the work involved (23%).
CONCLUSIONS—Parents' understanding of trial characteristics might be improved by designing less difficult informed consent forms and by the investigator giving extra attention and information to non-west European parents. Adequate measures should be taken to avoid parents feeling obliged to participate, rather than giving true informed consent.