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Parent Pain Responses as Predictors of Daily Activities and Mood in Children with Juvenile Idiopathic Arthritis: The Utility of Electronic Diaries

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Parent Pain Responses as Predictors of Daily Activities and Mood in Children with Juvenile Idiopathic Arthritis: The Utility of Electronic Diaries
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  Original Article  Parent Pain Responses as Predictors of Daily  Activities and Mood in Children with JuvenileIdiopathic Arthritis: The Utility of ElectronicDiaries Mark Connelly, PhD, Kelly K. Anthony, PhD, Rebecca Sarniak, MA,Maggie H. Bromberg, MA, Karen M. Gil, PhD, and Laura E. Schanberg, MD Children’s Mercy Hospitals and Clinics (M.C.), Kansas City, Missouri; Duke University Medical Center (K.K.A., M.H.B., L.E.S.), Durham, North Carolina; and University of North Carolina at Chapel Hill (R.S., K.M.G.), Chapel Hill, North Carolina, USA   Abstract  The present study used electronic diaries to examine how parent responses to their child’s pain  predict daily adjustment of children with juvenile idiopathic arthritis (JIA). Nine school-aged children with JIA along with one of their parents completed thrice-daily assessments of pain- related variables, activity participation, and mood using handheld computers (Palm    pilots)  for 14 days, yielding a potential of 42 child and parent assessments for each dyad. Children  provided information on current pain level, mood, and participation in social, physical, and school activities. Parents independently rated their own mood as well as their behavioral responses to their child’s pain at the same time points using a separate handheld computer.Results of multilevel modelinganalyses demonstrated that use of ‘‘protective’’ pain responses by  parents significantly predicted decreases in child activity and positive mood, with an even stronger inverse relationship between protective pain response and positive mood observed in childrenwithhigherthanaveragediseaseseverity.Protectivepainresponseswerenotfoundtobe significantlypredictiveofdailynegativemoodinchildren.Theuseof‘‘distracting’’responsesby  parents significantly predicted less child activity restrictions but only in children having higher diseaseseverity.Therealsowasanunexpectedtrendinwhichparentuseofmoredistractingpain responses tended to be associated with lower child positive mood. These preliminary findings suggest the importance of the parent in influencing adjustment in children with JIA and lend support to the incorporation of parents into comprehensive pain management approaches. The  potentialbenefitsofusingelectronicdailydiariesasa strategytoexaminepainandadjustment in children with JIA pain are discussed.  J Pain Symptom Manage 2010;39:579 e 590.  2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words  Children, juvenile arthritis, pain, parent, electronic diary  Address correspondence to  : Mark Connelly, PhD,Children’sMercyHospitalsandClinics,2401GillhamRoad, Kansas City, MO 64108, USA. E-mail:mconnelly1@cmh.edu Accepted for publication: August 3, 2009.   2010 U.S. Cancer Pain Relief CommitteePublished by Elsevier Inc. All rights reserved.0885-3924/10/$ e see front matterdoi:10.1016/j.jpainsymman.2009.07.013 Vol. 39 No. 3 March 2010 Journal of Pain and Symptom Management 579   Introduction  Despite significant advances in medicaltreatments for children with juvenile idio-pathic arthritis (JIA), persistent pain is a com-mon complaint. 1 Pain has been shown to bea primary determinant of the physical, emo-tional, and social functioning in these chil-dren. 2 Disease variables such as the level of inflammation do not fully explain the extent to which pain affects function and adjustment in children with JIA; 3 thus, treatments that solely target disease activity may be inadequateto optimize health outcomes. The biobehavio-ral model of pain 4 adds to our understandingof impairment in children with JIA by empha-sizing factors in addition to disease variables,such as emotional and social influences.Studies based on samples of children withidiopathic chronic pain conditions have in-creasingly recognized the important role of the family context. In particular, parent re-sponses to a child’s pain may partially explainthe extent to which pain affects the child’sphysical, emotional, and social well-being. Spe-cifically, in children with chronic headacheand chronic abdominal pain, parent responsescharacterized by high levels of attention or vig-ilance to pain, as well as responses that convey permission to avoid daily responsibilities be-cause of pain (i.e., protective responses),have been associated with greater functionaldisability such as reduced social and physicalactivities. 5 e 9 Conversely, responses that pro-mote active coping efforts and refocus thechild’s attention away from pain sensations(i.e., distracting responses) decrease func-tional disability, such as school absenteeism. 10 These findings are consistent with social learn-ing theories that emphasize how responses topain can lead to pain-related disability. 11,12 Parentvariablesalsoarerelevantinpredictingthehealth status of children withJIA. For exam-ple, studieshave shown that parental emotionaldistress,theextenttowhichtheparentperceiveshisorherchildasvulnerableandpronetodevel-oping medical problems, and the parent’s ownhistory of chronic pain are each associated withthe physical and psychological adjustments of the child. 13 e 16 However, research on children with JIA has not yet fully explored how parent pain responses relate to physical, emotional,and social aspects of the child’s daily life.Prior studies evaluating the influence of par-ent responses to children’s pain are limited by cross-sectional design (i.e., single-point assess-ment) and reliance on paper-and-pencil mea-sures that examine the usual or typical parent response patterns. This methodology assumesthat parent pain responses, children’s func-tional ability,and their association are relatively consistent over time. However, previous studieschallenge this assumption, showing that care-givers of children with chronic arthritis interact differently with the child depending on thechild’s current pain level and other diseasesymptoms. 17  An additional limitation to cross-sectional methodology is that retrospectiverecall of pain and associated symptoms is ofteninaccurate. 18,19 Consequently,aninnovativeap-proach is needed to study how day-to-day varia-tions in parent responses to pain predict changes in functioning in children with JIA.The purpose of the present study was to ex-amine the relationship between parents’ painresponses and the daily activity (i.e., physical,social, academic, and emotional functioning)of children with JIA using handheld com-puters (Palm   pilots). The use of handheldcomputers to collect data from participants within and across days, referred to as ‘‘comput-erized ecological momentary assessment,’’ 20 al-lows for in-the-moment tracking of pain andpain responses over time. We hypothesizedthe following: 1) greater use of ‘‘distracting’’parental pain responses (responses that pro-mote active coping and self-management of pain in children) will predict less reductionin daily physical, academic, and social activitiesand less adverse effects on children’s daily mood; 2) greater use of ‘‘protective’’ parentalpain responses (responses that promote pas-sive or avoidant coping and reinforce illnessbehaviors in children) will predict greater re-ductions in daily activities and greater adverseeffects on children’s daily mood; and 3) rela-tionships observed in Hypotheses 1 and 2 willnot be significantly affected by child’s daily pain intensity levels or disease severity. Methods  Participants  Participants were recruited during routinefollow-up visits at the Pediatric Rheumatology  580 Vol. 39 No. 3 March 2010 Connelly et al.  Clinic at Duke University Medical Center overa three-month recruitment interval. The target sample size for this study was 10 dyads and wasbased on an estimate of the number of dyadsthat could be recruited within the specifiedtime interval, given available resources. Fifteenconsecutive families were approached beforeobtaining the target sample size of 10 dyads.Families that declined participation citedtime constraints as the primary reason. Techni-cal problems in retrieving data from one of theelectronic diary devices resulted in the loss of one child-parent dyad’s data, leaving a finalusable sample of nine dyads.Of the final nine child participants, eight  were female; seven self-identified as Caucasian(with the remaining two self-identifying as Afri-can American); and the average age was 12.3 years (standard deviation [SD] ¼ 3.4 years,range 8 e 16 years). All child participants werediagnosed with JIA by a pediatric rheumatolo-gist based on criteria established by the Inter-national League Against Rheumatism. 21  Allchild participants had polyarticular arthritis;seven had polyarticular JIA, and two had spon-dyloarthropathy. Disease severity ratings basedon physician assessment at the initial study visit  were as follows: two patients in remission,three patients with mild disease severity, threepatients with moderate disease severity, andone patient with severe disease severity. Sevenchildren were on methotrexate, and two wereon an anti-tumor necrosis factor agent. Fivechildren in the sample also were taking sched-uled nonsteroidal anti-inflammatory drugs.Of the final nine parents, eight were thebiological mothers and one was the biologicalfather. Average age of the parent participants was 40 years (SD ¼ 6 years, range 31 e 58 years).Five of the parents were married, three weredivorced, and one was widowed. Combinedfamily income ranged from less than $10,000to $130,000, with an average of $80,000. Procedure  Consecutive patients between the ages of 8and 16 years with a diagnosis of JIA were pre-screened by clinic staff using clinic schedules.Children and their primary caregiver were ap-proached by a research assistant immediately following their clinic visit. The intent and re-quirements of the study were explained tothe family by the research assistant. Thoseinterested in participating completed parentalpermission and child assent forms approved by the Institutional Review Board of Duke Univer-sity Medical Center. After providing permission and assent, boththe child and parent were independently trained in using Palm   pilots (Model m505).Both the child and parent were given theirown Palm   pilot to use for the study. ThePalm  pilots were programmed to signal an au-ditoryalarmthreetimesperday(morning,after-noon, and evening) at times individually tailored to the dyad’s daily schedule. Times were programmed to maximize the chancesthattheparentandchildwouldhavehadrecent interaction.Themorningassessmentwassched-uled just after awakening and before school or work, when the child and parent would likely be together. The afternoon assessment wasscheduledforanafter-schooltime,andtheeven-ing assessment was scheduled before bedtime.Repeat alarms continued to go off at 30-secondintervals for an additional two minutes if re-sponsestothediaryquestionswerenotinitiated.If no responses were entered within 30 minutesofthealarm,theassessmentwasnolongeravail-abletocompleteuntilthenextscheduledassess-ment point. Following training and thecompletion of sample diary entries, parentsand children took the Palm  pilots home andindependently completed questions at the pro-grammed times for the next 14 days (42 occa-sions per dyad, or a possible 378 observationsacross the nine dyads). All data were time- anddate-stamped and uploaded to a database onreturn of the devices at the end of the study. Child Electronic Diary Measures  Pain  . Ateachassessment,childrenwereasked whether they were currently in pain (without the source of pain being specified) and if so,how intense their current pain was. Pain inten-sity was measured on a 50 mm electronic visualanalog scale (converted to a 0 e 100 continuousscale for analyses) with anchors ‘‘no pain’’ and‘‘worst pain possible.’’ Electronic visual analogscales have been previously validated in pediat-ric populations and are comparable to theirpaper-based counterparts. 22,23 Mood  . Using a modified version of the10-item Positive and Negative Affect Schedulefor Children (PANAS-C), 24 children also were Vol. 39 No. 3 March 2010 581Parent Pain Responses and Functioning in JIA   asked to rate the extent to which they were cur-rently feeling a given affective descriptor suchas ‘‘excited’’ or ‘‘upset’’ using a five-point rat-ing scale ranging from ‘‘very slightly or not at all’’ to ‘‘extremely.’’ The measure yields twomodestly correlated scales (positive and nega-tive affect). Both the positive and negativeaffect scales were used as indices of emotionalfunctioning in the present study. Between-person internal consistency estimates (Cronba-ch’s alphas calculated on each patient’s itemscores aggregated across days) were 0.96 forpositive affect and 0.77 for negative affect. Activity Interference  . The level of current activ-ity interference was assessed using 11 itemsadapted from the Child Activity LimitationsQuestionnaire. 25,26 Children were asked torate the extent to which they were currently re-ducing their involvement in social activities(e.g., activities with friends and family, groupor club activities, hobbies), physical activities(e.g., sports, walking, lifting or carrying things,chores), and academic activities (e.g., writing,doing schoolwork, participating in school).Consistent with prior diary studies in children with arthritis, 27 response categories were de-creased from the srcinal measure to a three-point scale (reducing the activity ‘‘not at all,’’‘‘a little,’’ or ‘‘a lot’’) to facilitate repeated re-sponding via an electronic diary. An extra cat-egory of ‘‘not applicable’’ was added for theschool items. Responses were summed at each assessment point and within each cate-gory (social, physical, and academic). Re-sponses of ‘‘a little’’ or ‘‘a lot’’ were thencombined to compute the percentage that children reported cutting back on overall activ-ities and to compute the percentages of activity reductions within the social, physical, and aca-demic domains. Between-person internal con-sistency estimates (Cronbach’s alphasaveraged across patients and days) for the totalscale was 0.95. The social and physical items yielded sufficient internal consistency (0.86and 0.85, respectively) to warrant subscaleanalyses, whereas the academic items did not (Cronbach’s alpha of 0.35) in part because of low variability on the items, (i.e., in 98% of in-stances, children reported no reduction inschool attendance or schoolwork). Thus, theacademic subscale was not evaluated separately in analyses, but academic items were still in-cluded for analyses involving total scale scores. Parent Electronic Diary Measures  Interaction with Child  . At each assessment, par-ents were first asked whether they were pres-ently with their child to gauge the number of assessments when parents and children weretogether. Mood  . Parents were then asked to rate theirown current mood using the PANAS. 28 Theadult PANAS is a 20-item scale that includes de-scriptors of both positive and negative affects.Participants indicate the degree to which they experienced a given affect that day using a re-sponse scale of 1 (‘‘very slightly or not at all’’)to5(‘‘extremely’’).Rawscoresfornegativelyva-lenced descriptors are averaged to comprise anindexofnegativeaffect,andscoresforpositively  valenced descriptors are averaged to compriseanindexofpositiveaffect.Manystudies,includ-ing daily diary studies, 29 have used this instru-ment and demonstrated internal consistency and validity. Between-person internal consis-tency estimates for the present study were 0.97for positive affect and 0.85 for negative affect. Caregiver Responses to Child Pain  . Caregiverpain responses were assessed using 14 itemsadaptedfromtheAdultResponsestoChildren’sSymptomsQuestionnaire(ARCS). 9,30 TheARCSassesses three categories of caregiver behavioralresponses to child pain: protective responses,discouraging or minimizing responses, anddistracting or monitoring responses. Protectiveresponses are responses that either positively reinforce pain complaints through increasedparental presence or attention or negatively reinforce pain complaints through permissiontoescapeoravoidunwantedrolesorresponsibil-ities. Discouraging responses are responses that either are overtly negative (e.g., expressinganger or frustration about the child’s paincomplaint) or imply lack of concern or support.Distracting or monitoring responses compriseresponses that monitor the child’s level of painthrough inquiry or facilitate distraction away from pain sensations through strategies such asinvolvement in activities. For the present study,parents were asked to indicate whether they used a specific response since they last com-pleted an electronic diary entry. For analyses, 582 Vol. 39 No. 3 March 2010 Connelly et al.  responses weresummed withineachcategory of the srcinal scale to derive separate subscalescores for protective, discouraging or minimiz-ing responses, and distracting or monitoringresponses. The between-person internal consis-tency estimates (Cronbach’s alphas averagedacrossparentsanddays)were0.81forprotectiveresponsesand0.83fordistractingormonitoringresponses. Discouraging or minimizing painresponses were reported on very few occasionsthat a separate subscale could not be validly computed. Thus, only two subscales (protectiveresponses and distracting or monitoringresponses) were used for the analyses. Sample Characteristics  Data on child demographics (date of birth,gender, race, and grade in school) and parent demographics (age, marital status, and com-bined family income) were collected for de-scriptive purposes via a brief questionnaire.Disease subtype and medication data wereobtained from the electronic medical record. All children were classified along a four-point disease severity scale ranging from ‘‘in remis-sion’’ (1) to ‘‘severe’’ (4) by the same pediatricrheumatologist based on most recent joint count and erythrocyte sedimentation rate. 31 Analyses  Descriptive analyses were conducted oneach of the daily measures and summarized us-ing daily means, variances, and frequency dis-tributions. Multilevel modeling was used forprimary analyses to account for repeated mea-surements (referred to as ‘‘Level 1 units’’)nested within each child-parent dyad (referredto as ‘‘Level 2 units’’). This form of analyses isregarded as being the most accurate for thetype of data furnished by computerized ecolog-ical momentary assessment. 32,33 The type of multilevel model used for primary analyses isoften referred to as a two-level ‘‘interceptsand slopes as outcomes’’ model, with randomly  varying intercepts and nonrandomly varyingslopes. 34,35 To test our hypotheses, the numberof distracting and protective pain responsesendorsed by parents at a given time was sepa-rately specified as ‘‘Level 1’’ predictor vari-ables; child activity interference, positiveaffect, and negative affect scores were sepa-rately specified as ‘‘Level 1’’ outcome variables.The relationship between a given predictor variable and an outcome variable was then es-timated for each child by a Level 1 slope coef-ficient while adjusting for any effects of painintensity. These Level 1 slope coefficients were then evaluated as outcome variables at Level 2 to determine the statistical significanceof the average slope coefficients for this sam-ple (Hypotheses 1 and 2) and the extent to which these average slope coefficients changedbecause of the child’s level of disease severity (Hypothesis 3) (see Appendix for furtherexplanation). Hierarchical linear modelingsoftware 36  was used to furnish maximum likeli-hood estimates of the model parameters.Totestforchangesinresponsesthatmayoccursimply as a function of completing multiple as-sessments over time (e.g., ‘‘reactivity effects’’),temporal trends in the reporting of parent painresponse subscales and child functioning sub-scales were evaluated (i.e., by specifying ‘‘day’’asasoleLevel1predictorvariableandspecifyingparentpainresponsesubscalesorchildfunction-ing subscales as the Level 1 outcome variable).Unconditional means (i.e., intercept only models at Level 1 and Level 2) were fit beforeproceeding with our primary analyses. The un-conditional means model permits an evaluationof the proportion of total variance in childfunctioning and parent responses attributabletoindividual differences(the‘‘intraclasscorrela-tion coefficient’’). Results   Descriptive Statistics  Table 1 presents descriptive statistics on thedaily child and parent measures. The parent response rate was 93% of days (7% missingresponses, ranging from 0% to 50%), and thechild response rate was 87.5% of days (12.5%missing response, ranging from 0% to 36%).Parents reported being present with their childfor74%oftheassessmentswithnosystematicas-sociation between presence withchild andtimeof assessment (morning, afternoon, and even-ing),  c 2 (2),  n  ¼ 350,  P  ¼ 0.81. Most (80%) of the children in the sample reported that they  would prefer to use electronic diaries relativeto completing questions on paper. Those whosaid that they would prefer paper question-naires stated that they did not like the imposedtime limit for completing questions on the Vol. 39 No. 3 March 2010 583 Parent Pain Responses and Functioning in JIA 
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