Abstract
Purpose
To qualitatively describe reasons for disagreement in ratings of bothersome symptoms between child self-report and parent proxy-report.
Methods
We enrolled child and parent dyads, who understood English and where children (4–18 years of age) were diagnosed with cancer or were hematopoietic stem cell transplantation (HSCT) recipients. Each child and parent separately reported symptoms using self-report or proxy-report Symptom Screening in Pediatrics Tool (SSPedi). We then used semi-structured interviews to elicit reasons for discrepancies in symptom reporting.
Results
We enrolled 12 dyads in each of four age cohorts, resulting in 48 dyads. Forty-one dyads (85.4%) had disagreement in rating the presence or absence of at least one symptom. Themes identified as reasons for disagreement included (1) perception, differing perception of symptom or availability or palatability of intervention; (2) understanding, difficulty orienting to time frame or concept of bother; (3) lack of communication, including child not acknowledging or talking about experiences; (4) projection, of how the parent felt or how they assumed the child would feel; and (5) discrepancy, in how the amount of symptom bother that was initially reported on SSPedi, by either child or parent, did not align with what was reported during the dyad discussion.
Conclusion
We identified themes that explained disagreement in ratings of bothersome symptoms between child self-report and parent proxy-report. Some disagreement may be reduced by enhancing communication about symptom reporting between child and parent. Future research should focus on methods of symptom screening that encourage communication between children with cancer and their caregivers.
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Data availability
Full details of the data produced and analyzed during this study are available from the corresponding author on reasonable request.
References
Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P (2002) 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 94(7):2090–2106. https://doi.org/10.1002/cncr.10428
Levi RB, Drotar D (1999) Health-related quality of life in childhood cancer: discrepancy in parent-child reports. Int J Cancer Suppl 12:58–64. https://doi.org/10.1002/(sici)1097-0215(1999)83:12+<58::aid-ijc11>3.0.co;2-a
Yeh C-H, Chang C-W, Chang P-C (2005) Evaluating quality of life in children with cancer using children’s self-reports and parent-proxy reports. Nurs Res 54(5):354–362
Upton P, Lawford J, Eiser C (2008) Parent-child agreement across child health-related quality of life instruments: a review of the literature. Qual Life Res Int J Qual Life Asp Treat Care Rehab 17(6):895–913. https://doi.org/10.1007/s11136-008-9350-5
Russell KM, Hudson M, Long A, Phipps S (2006) Assessment of health-related quality of life in children with cancer: consistency and agreement between parent and child reports. Cancer 106(10):2267–2274. https://doi.org/10.1002/cncr.21871
Eiser C, Varni JW (2013) Health-related quality of life and symptom reporting: similarities and differences between children and their parents. Eur J Pediatr 172(10):1299–1304. https://doi.org/10.1007/s00431-013-2049-9
Varni JW, Limbers C, Burwinkle TM (2007) Literature review: health-related quality of life measurement in pediatric oncology: hearing the voices of the children. J Pediatr Psychol 32(9):1151–1163. https://doi.org/10.1093/jpepsy/jsm008
Schulte F, Wurz A, Reynolds K, Strother D, Dewey D (2016) Quality of life in survivors of pediatric cancer and their siblings: the consensus between parent-proxy and self-reports. Pediatr Blood Cancer 63(4):677–683. https://doi.org/10.1002/pbc.25868
Varni JW, Limbers CA, Burwinkle TM (2007) How young can children reliably and validly self-report their health-related quality of life?: an analysis of 8,591 children across age subgroups with the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes 5:1. https://doi.org/10.1186/1477-7525-5-1
Abate C, Lippe S, Bertout L, Drouin S, Krajinovic M, Rondeau E, Sinnett D, Laverdiere C, Sultan S (2018) Could we use parent report as a valid proxy of child report on anxiety, depression, and distress? A systematic investigation of father-mother-child triads in children successfully treated for leukemia. Pediatr Blood Cancer 65(2). https://doi.org/10.1002/pbc.26840
Hermont AP, Scarpelli AC, Paiva SM, Auad SM, Pordeus IA (2015) Anxiety and worry when coping with cancer treatment: agreement between patient and proxy responses. Pediatr Blood Cancer 24(6):1389–1396. https://doi.org/10.1007/s11136-014-0869-3
Ullrich CK, Rodday AM, Bingen KM, Kupst MJ, Patel SK, Syrjala KL, Harris LL, Recklitis CJ, Chang G, Guinan EC, Terrin N, Tighiouart H, Phipps S (2017) Three sides to a story: Child, parent, and nurse perspectives on the child's experience during hematopoietic stem cell transplantation. Cancer 123(16):3159–3166. https://doi.org/10.1002/cncr.30723
Tomlinson D, Plenert E, Dadzie G, Loves R, Cook S, Schechter T, Furtado J, Dupuis LL, Sung L (2020) Discordance between pediatric self-report and parent proxy-report symptom scores and creation of a dyad symptom screening tool (co-SSPedi). Cancer Med. 9(15):5526–5534. https://doi.org/10.1002/cam4.3235
Saunders B, Sim J, Kingstone T, Baker S, Waterfield J, Bartlam B, Burroughs H, Jinks C (2018) Saturation in qualitative research: exploring its conceptualization and operationalization. Qual Quant 52(4):1893–1907. https://doi.org/10.1007/s11135-017-0574-8
Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3(2):77–101. https://doi.org/10.1191/1478088706qp063oa
Tuckett AG (2005) Applying thematic analysis theory to practice: a researcher’s experience. Contemp Nurse 19(1–2):75–87. https://doi.org/10.5172/conu.19.1-2.75
Cheng L, Wang L, He M, Feng S, Zhu Y, Rodgers C (2018) Perspectives of children, family caregivers, and health professionals about pediatric oncology symptoms: a systematic review. Support Care Cancer 26(9):2957–2971. https://doi.org/10.1007/s00520-018-4257-3
Smith LE, Weinman J, Yiend J, Rubin J (2020) Psychosocial factors affecting parental report of symptoms in children: a systematic review. Psychosom Med 82(2):187–196. https://doi.org/10.1097/psy.0000000000000767
De Los RA (2011) Introduction to the special section: more than measurement error: discovering meaning behind informant discrepancies in clinical assessments of children and adolescents. J Clin Child Adolesc Psychol 40(1):1–9. https://doi.org/10.1080/15374416.2011.533405
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LS is supported by the Canada Research Chair in Pediatric Oncology Supportive Care.
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All authors participated in the different aspects of the study. Overall concept and design of the study: DT, EP, LD, and LS. Operational aspects of the study: DT, EP, GD, RL, SC, and JF. Analysis and interpretation of the results: DT, EP, RL, SC, TL, LD, and LS. Study report first and last draft: DT and LS. All authors reviewed and amended the study manuscript repeatedly and approved the final version.
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Tomlinson, D., Plenert, E., Dadzie, G. et al. Reasons for disagreement between proxy-report and self-report rating of symptoms in children receiving cancer therapies. Support Care Cancer 29, 4165–4170 (2021). https://doi.org/10.1007/s00520-020-05930-y
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DOI: https://doi.org/10.1007/s00520-020-05930-y