An observational study of patient versus parental perceptions of health-related quality of life in children and adolescents with a chronic pain condition: who should the clinician believe?

Health and Quality of Life Outcomes

Gerald McGwin¹  Cynthia L Bridgewater³  Thomas R Vetter² 

[1] Department of Epidemiology, School of Public Health, University of Alabama at Birmingham, 1922 7th Ave. South, Suite 120, Birmingham, AL, 35294-0022, USA;Department of Anesthesiology, University of Alabama School of Medicine, 619 19th Street South, JT-862, Birmingham, AL, 35249-6810, USA;Department of Nursing, Children’s Hospital of Alabama, 1600 7th Avenue South, Birmingham, AL, 35233, USA

关键词: Child-parent agreement;    Proxy-report;    Adolescents;    Children;    Pediatric;    Chronic pain;    Health-related quality of life;   

Others  :  825361
DOI  :  10.1186/1477-7525-10-85

 received in 2011-12-17, accepted in 2012-07-05,  发布年份 2012

【 摘 要 】

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 PedsQL^TM 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.

【 授权许可】

   
2012 Vetter et al.; licensee BioMed Central Ltd.

【 图 表 】

Figure 1.

Figure 2.

Figure 3.

Figure 4.

【 参考文献 】

• [1]Eiser C: Use of quality of life measures in clinical trials. AmbulPediatr 2004, 4:395-399.
• [2]Bevans KB, Riley AW, Moon J, Forrest CB: Conceptual and methodological advances in child-reported outcomes measurement. Expert Rev Pharmacoecon Outcomes Res 2010, 10:385-396.
• [3]McGrath PJ, Walco GA, Turk DC, Dworkin RH, Brown MT, Davidson K, Eccleston C, Finley GA, Goldschneider K, Haverkos L, et al.: Core outcome domains and measures for pediatric acute and chronic/recurrent pain clinical trials: PedIMMPACT recommendations. J Pain 2008, 9:771-783.
• [4]Palermo TM, Long AC, Lewandowski AS, Drotar D, Quittner AL, Walker LS: Evidence-based assessment of health-related quality of life and functional impairment in pediatric psychology. J PediatrPsychol 2008, 33:983-996.
• [5]Parsons SK, Mayer DK: Health-related quality of life assessment in hematologic disease. HematolOncolClin North Am 2004, 18:1235-1248.
• [6]Varni JW, Stucky BD, Thissen D, Dewitt EM, Irwin DE, Lai JS, Yeatts K, Dewalt DA: PROMIS Pediatric Pain Interference Scale: an item response theory analysis of the pediatric pain item bank. J Pain 2010, 11:1109-1119.
• [7]Gershon RC, Rothrock N, Hanrahan R, Bass M, Cella D: The use of PROMIS and assessment center to deliver patient-reported outcome measures in clinical research. J ApplMeas 2010, 11:304-314.
• [8]Upton P, Lawford J, Eiser C: Parent-child agreement across child health-related quality of life instruments: a review of the literature. Qual Life Res 2008, 17:895-913.
• [9]Varni JW, Limbers CA, Burwinkle TM: Parent proxy-report of their children's health-related quality of life: an analysis of 13,878 parents' reliability and validity across age subgroups using the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes 2007, 5:2. BioMed Central Full Text
• [10]Varni JW, Seid M, Kurtin PS: PedsQL 4.0: Reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care 2001, 39:800-812.
• [11]Morrow AM, Hayen A, Quine S, Scheinberg A, Craig JC: A comparison of doctors', parents’ and children's reports of health states and health-related quality of life in children with chronic conditions. Child Care Health Dev 2012, 38:186-195.
• [12]Solans M, Pane S, Estrada MD, Serra-Sutton V, Berra S, Herdman M, Alonso J, Rajmil L: Health-related quality of life measurement in children and adolescents: a systematic review of generic and disease-specific instruments. Value Health 2008, 11:742-764.
• [13]Eiser C, Morse R: Can parents rate their child's health-related quality of life? Results of a systematic review. Qual Life Res 2001, 10:347-357.
• [14]Taylor RM, Grieve A, Gibson F, Dhawan A, Franck LS: Parental assessment of adolescent quality of life: can it replace self-assessment? Qual Life Res 2011, 20:1715-1720.
• [15]Cremeens J, Eiser C, Blades M: Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales. Health Qual Life Outcomes 2006, 4:58. BioMed Central Full Text
• [16]Jozefiak T, Larsson B, Wichstrom L, Mattejat F, Ravens-Sieberer U: Quality of Life as reported by school children and their parents: a cross-sectional survey. Health Qual Life Outcomes 2008, 6:34. BioMed Central Full Text
• [17]Waters E, Stewart-Brown S, Fitzpatrick R: Agreement between adolescent self-report and parent reports of health and well-being: results of an epidemiological study. Child Care Health Dev 2003, 29:501-509.
• [18]Bastiaansen D, Koot HM, Ferdinand RF, Verhulst FC: Quality of life in children with psychiatric disorders: self-, parent, and clinician report. J Am Acad Child Adolesc Psychiatry 2004, 43:221-230.
• [19]Powers SW, Patton SR, Hommel KA, Hershey AD: Quality of life in childhood migraines: Clinical impact and comparison to other chronic illnesses. Pediatrics 2003, 112:e1-e5.
• [20]Powers SW, Patton SR, Hommel KA, Hershey AD: Quality of life in paediatric migraine: Characterization of age-related effects using PedsQL 4.0. Cephalalgia 2004, 24:120-127.
• [21]Loonen HJ, Derkx BH, Koopman HM, Heymans HS: Are parents able to rate the symptoms and quality of life of their offspring with IBD? Inflamm Bowel Dis 2002, 8:270-276.
• [22]Youssef NN, Murphy TG, Langseder AL, Rosh JR: Quality of life for children with functional abdominal pain: A comparison study of patients' and parents' perceptions. Pediatrics 2006, 117:54-59.
• [23]Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P: The PedsQL in pediatric cancer: Reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. Cancer 2002, 94:2090-2106.
• [24]Chang PC, Yeh CH: Agreement between child self-report and parent proxy-report to evaluate quality of life in children with cancer. Psychooncology 2005, 14:125-134.
• [25]Panepinto JA, O'Mahar KM, DeBaun MR, Loberiza FR, Scott JP: Health-related quality of life in children with sickle cell disease: Child and parent perception. Br J Haematol 2005, 130:437-444.
• [26]State & County QuickFacts. Alabama; http://quickfacts.census.gov/qfd/states/01000.html webcite
• [27]Varni JW, Seid M, Rode CA: The PedsQL (TM): Measurement model for the pediatric quality of life inventory. Med Care 1999, 37:126-139.
• [28]Field AP: Discovering statistics using SPSS: (and sex and drugs and rock 'n' roll). Los Angeles [i.e. Thousand Oaks, Calif. London: SAGE Publications; 2009.
• [29]Varni JW, Burwinkle TM, Seid M, Skarr D: The PedsQL 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. AmbulPediatr 2003, 3:329-341.
• [30]The PedsQLTM 4.0 Measurement Model for the Pediatric Quality of Life InventoryTM. http://www.pedsql.org/about_pedsql.html; http://www.pedsql.org/about_pedsql.html webcite
• [31]Vetter TR: A primer on health-related quality of life in chronic pain medicine. AnesthAnalg 2007, 104:703-718.
• [32]Seid M, Varni JW, Gidwani P, Gelhard LR, Slymen DJ: Problem-solving skills training for vulnerable families of children with persistent asthma: report of a randomized trial on health-related quality of life outcomes. J PediatrPsychol 2010, 35:1133-1143.
• [33]Seid M, Varni JW, Cummings L, Schonlau M: The impact of realized access to care on health-related quality of life: a two-year prospective cohort study of children in the California State Children's Health Insurance Program. J Pediatr 2006, 149:354-361.
• [34]Vetter TR: Assessment Tools in Pediatric Chronic Pain: Reliability and Validity. In Handbook of Pediatric Chronic Pain: Current Science and Integrative Practice. Edited by McClain BC, Suresh S. New York: Springer; 2011:63-85.
• [35]Zhou H, Roberts P, Horgan L: Association between self-report pain ratings of child and parent, child and nurse and parent and nurse dyads: meta-analysis. J AdvNurs 2008, 63:334-342.
• [36]Varni JW, Rapoff MA, Waldron SA, Gragg RA, Bernstein BH, Lindsley CB: Chronic pain and emotional distress in children and adolescents. J DevBehavPediatr 1996, 17:154-161.
• [37]Vetter TR, Heiner EJ: Discordance between patient self-reported visual analog scale pain scores and observed pain-related behavior in older children after surgery. J ClinAnesth J ClinAnesth 1996, 8:371-375.
• [38]Gragg RA, Rapoff MA, Danovsky MB, Lindsley CB, Varni JW, Waldron SA, Bernstein BH: Assessing chronic musculoskeletal pain associated with rheumatic disease: Further validation of the pediatric pain questionnaire. J PediatrPsychol 1996, 21:237-250.
• [39]Walco GA, Dampier CD: Pain in children and adolescents with sickle cell disease: A descriptive study. J PediatrPsychol 1990, 15:643-658.
• [40]Turk DC, Dworkin RH, Allen RR, Bellamy N, Brandenburg N, Carr DB, Cleeland C, Dionne R, Farrar JT, Galer BS, et al.: Core outcome domains for chronic pain clinical trials: IMMPACT recommendations. Pain 2003, 106:337-345.
• [41]Dworkin RH, Turk DC, Farrar JT, Haythornthwaite JA, Jensen MP, Katz NP, Kerns RD, Stucki G, Allen RR, Bellamy N, et al.: Core outcome measures for chronic pain clinical trials: IMMPACT recommendations. Pain 2005, 113:9-19.
• [42]McHorney CA, Ware JE Jr, Raczek AE: The MOS 36-Item Short-Form Health Survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Med Care 1993, 31:247-263.
• [43]Ware JE, Sherbourne CD: The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 1992, 30:473-483.
• [44]Ware JE, Kosinski M, Dewey JE: How to score Version Two of the SF-36 Health Survey. Lincoln: QualityMetric, Incorporated; 2000.
• [45]Coons SJ, Shaw JW: Generic adult health status measures. In Assessing quality of life in clinical trials. 2nd edition. Edited by Fayers P, Hays R. New York: Oxford University Press; 2005:325-338.
• [46]Hays RD: Generic versus disease-targeted instruments. In Assessing quality of life in clinical trials. 2nd edition. Edited by Fayers P, Hays R. New York: Oxford University Press; 2005:3-8.
• [47]De Civita M, Regier D, Alamgir AH, Anis AH, Fitzgerald MJ, Marra CA: Evaluating health-related quality-of-life studies in paediatric populations: some conceptual, methodological and developmental considerations and recent applications. PharmacoEconomics 2005, 23:659-685.
• [48]Lee J, Koh D, Ong CN: Statistical evaluation of agreement between two methods for measuring a quantitative variable. ComputBiol Med 1989, 19:61-70.
• [49]McGraw KO, Wong SP: Forming inferences about some intraclass correlation coefficients. Psychol Methods 1996, 1:30-46.
• [50]Novella JL, Jochum C, Jolly D, Morrone I, Ankri J, Bureau F, Blanchard F: Agreement between patients' and proxies' reports of quality of life in Alzheimer's disease. Qual Life Res 2001, 10:443-452.
• [51]Bland JM, Altman DG: Statistical methods for assessing agreement between two methods of clinical measurement. Lancet 1986, 1:307-310.
• [52]Bland JM, Altman DG: Measuring agreement in method comparison studies. Stat Methods Med Res 1999, 8:135-160.
• [53]Gabbe BJ, Simpson PM, Sutherland AM, Palmer CS, Butt W, Bevan C, Cameron PA: Agreement between parent and child report of health-related quality of life: impact of time postinjury. J Trauma 2010, 69:1578-1582.
• [54]Majnemer A, Shevell M, Law M, Poulin C, Rosenbaum P: Reliability in the ratings of quality of life between parents and their children of school age with cerebral palsy. Qual Life Res 2008, 17:1163-1171.
• [55]Hays RD, Vickrey BG, Hermann BP, Perrine K, Cramer J, Meador K, Spritzer K, Devinsky O: Agreement between self reports and proxy reports of quality of life in epilepsy patients. Qual Life Res 1995, 4:159-168.
• [56]April KT, Feldman DE, Platt RW, Duffy CM: Comparison between Children with Juvenile Idiopathic Arthritis (JIA) and their parents concerning perceived Quality of Life. Qual Life Res 2006, 15:655-661.
• [57]Logan DE, Scharff L: Relationships between family and parent characteristics and functional abilities in children with recurrent pain syndromes: An investigation of moderating effects on the pathway from pain to disability. J PediatrPsychol 2005, 30:698-707.
• [58]Conger KJ, Rueter MA, Conger RD: The role of economic pressure in the lives of parents and their adolescents: The family stress model. In Negotiating adolescence in times of social change. Edited by Crockeet LJ, Silbereisen RJ. Cambridge, England: Cambridge University Press; 2000:201-233.
• [59]Schor EL: Family pediatrics: Report of the Task Force on the Family. Pediatrics 2003, 111:1541-1571.
• [60]Conger RD, Donnellan MB: An Interactionist Perspective on the Socioeconomic Context of Human Development. Annu Rev Psychol 2007, 58:175-199.
• [61]Palermo TM, Chambers CT: Parent and family factors in pediatric chronic pain and disability: An integrative approach. Pain 2005, 119:1-4.
• [62]Varni JW, Rapoff MA, Waldron SA, Gragg RA, Bernstein BH, Lindsley CB: Effects of perceived stress on pediatric chronic pain. J Behav Med 1996, 19:515-528.
• [63]Sneeuw KC, Sprangers MA, Aaronson NK: The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease. J ClinEpidemiol 2002, 55:1130-1143.
• [64]Petsios K, Priftis KN, Tsoumakas C, Hatziagorou E, Tsanakas JN, Galanis P, Antonogeorgos G, Matziou V: Level of parent-asthmatic child agreement on health-related quality of life. J Asthma 2011, 48:286-297.
• [65]Panepinto JA, Hoffmann RG, Pajewski NM: The effect of parental mental health on proxy reports of health-related quality of life in children with sickle cell disease. Pediatr Blood Cancer 2010, 55:714-721.
• [66]Mulligan K, Etheridge A, Kassoumeri L, Wedderburn LR, Newman S: Do mothers and fathers hold similar views about their child's arthritis? Arthritis Rheum 2009, 61:1712-1718.
• [67]Sattoe JN, van Staa A, Moll HA: The proxy problem anatomized: child-parent disagreement in health related quality of life reports of chronically ill adolescents. Health Qual Life Outcomes 2012, 10:10. BioMed Central Full Text
• [68]Dell’Api M, Rennick JE, Rosmus C: Childhood chronic pain and health care professional interactions: shaping the chronic pain experiences of children. J Child Health Care 2007, 11:269-286.
• [69]Cucchiaro G: Pain in Children. In Biobehavioral Approaches to Pain. Edited by Moore R. New York: Springer; 2009:149-194.
• [70]Carter B: Chronic pain in childhood and the medical encounter: professional ventriloquism and hidden voices. Qual Health Res 2002, 12:28-41.
• [71]Corlett J, Twycross A: Negotiation of care by children's nurses: lessons from research. PaediatrNurs 2006, 18:34-37.
• [72]Corlett J, Twycross A: Negotiation of parental roles within family-centred care: a review of the research. J ClinNurs 2006, 15:1308-1316.
• [73]Clemente I, Lee SH, Heritage J: Children in chronic pain: promoting pediatric patients' symptom accounts in tertiary care. SocSci Med 2008, 66:1418-1428.
• [74]Clemente I: Progressivity and participation: children's management of parental assistance in paediatric chronic pain encounters. Sociol Health Illn 2009, 31:872-878.
• [75]Chambers CT: The role of family factors in pediatric pain. In Pediatric pain: Biological and social context. Edited by McGrath PJ, Finley GA. Seattle, WA: IASP Press; 2003:99-103.
• [76]Chambers CT, Craig KD, Bennett SM: The impact of maternal behavior on children's pain experiences: An experimental analysis. J PediatrPsychol 2002, 27:293-301.
• [77]Walco GA, Rozelman H, Maroof DA: The Assessment and Management of Chronic and Recurrent Pain in Adolescents. In Behavioral Approaches to Chronic Disease in Adolescence. Edited by O'Donohue WT. New York: Springer; 2009:163-175.
• [78]Eccleston C, Crombez G, Scotford A, Clinch J, Connell H: Adolescent chronic pain: Patterns and predictors of emotional distress in adolescents with chronic pain and their parents. Pain 2004, 108:221-229.
• [79]Kashikar-Zuck S, Goldschneider KR, Powers SW, Vaught MH, Hershey AD: Depression and functional disability in chronic pediatric pain. Clin J Pain 2001, 17:341-349.
• [80]Logan DE, Simons LE, Kaczynski KJ: School functioning in adolescents with chronic pain: the role of depressive symptoms in school impairment. J PediatrPsychol 2009, 34:882.
• [81]Vetter TR: A clinical profile of a cohort of patients referred to an anesthesiology-based pediatric chronic pain medicine program. AnesthAnalg 2008, 106:786-794.