Patient Versus Parental Perceptions about Pain and Disability in Children and Adolescents with a Variety of Chronic Pain Conditions

Vetter, Thomas R.; Bridgewater, Cynthia L; Ascherman, Lee I.; Madan‐Swain, Avi; McGwin, Gerald

doi:10.1155/2014/736053

Cited by 29 publications

(30 citation statements)

References 57 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…This is consistent with previous work that reported 42% to 49% agreement and low–moderate correlations between parent‐proxy and child self‐report scores on the generic PedsQL that measured physical, emotional, social, and school functioning for a similar sample of children with SCD . Also, low and variable agreement between parent‐proxy and child self‐report scores have been reported for children with other chronic conditions . In general, it is well known that parents of children with chronic disease report more impairment in PROs than the child does .…”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

Use of the new pediatric PROMIS measures of pain and physical experiences for children with sickle cell disease

Singh

Dasgupta

Simpson

et al. 2019

Pediatric Blood & Cancer

View full text Add to dashboard Cite

Background There are new pediatric domains to measure patients’ pain and physical experiences in the Patient‐Reported Outcomes Measurement Information System (PROMIS). The objective of this study was to establish the psychometric properties of these domains for children with sickle cell disease (SCD). Procedure We conducted a cross‐sectional analysis of PROMIS assessments of children with SCD recruited from a pediatric tertiary care clinic. Validity of the new PROMIS domains was determined by comparing scores between known groups and describing their correlations with previously validated PROMIS measures. Cronbach's alpha and item response theory (IRT) reliability were used to assess internal consistency reliability. Agreement between parent‐proxy and child self‐report was determined for all domains. Results Our study included 164 subjects, of whom 117 were eligible to self‐report. The mean T‐scores for physical stress experience, strength impact, pain behavior, and pain quality sensory scores were significantly different between children who used pain medications in the prior week and those who did not. There were also differences in T‐scores across children reporting mild, moderate, and severe pain on the pain intensity scale. All measures had Cronbach's alpha and IRT reliability > 0.80. The percentage of agreement between child and parent‐proxy PROMIS domains ranged from 36% to 60% depending on the domain. Conclusions The new PROMIS domains of physical stress experience, strength impact, pain behavior, and pain quality sensory domains are valid and reliable for children with SCD. The low–moderate agreement between parent‐proxy and child self‐report scores support the complementary information provided by the two perspectives.

show abstract

Section: Discussionmentioning

confidence: 99%

“…15 Also, low and variable agreement between parent-proxy and child self-report scores have been reported for children with other chronic conditions. 22,27 In general, it is well known that parents of children with chronic disease report more impairment in PROs than the child does. 25 The subgroup analyses for the pain-related domains…”

Section: Discussionmentioning

confidence: 99%

Use of the new pediatric PROMIS measures of pain and physical experiences for children with sickle cell disease

Singh

Dasgupta

Simpson

et al. 2019

Pediatric Blood & Cancer

View full text Add to dashboard Cite

show abstract

“…This section reports the findings from the analysis of 49 scales as reported in 46 studies. Twenty-six of the 40 reports on scales explicitly reported that children and/or adolescents completed the scale themselves [ 27 , 29 , 35 , 40 – 43 , 48 – 52 , 54 , 55 , 57 – 59 , 61 , 65 , 66 , 70 – 72 ]. Data include that from two in which more than one scale was used [ 27 , 29 ].…”

Section: Resultsmentioning

confidence: 99%

“…In ten studies (21.74%) parents completed pain measures in addition to their child's report [ 29 , 35 , 40 , 42 , 48 , 54 , 55 , 58 , 59 , 72 ]. These studies reported on the use of nine scales (one study reported the use of more than one scale used with parents and CYP [ 29 ]).…”

Section: Resultsmentioning

confidence: 99%

“…Thirty-five studies (76.09%) labelled the “0” anchor as “No Pain” [ 15 , 27 , 28 , 34 , 38 – 44 , 46 , 47 , 49 – 54 , 56 – 65 , 68 , 70 ]. Three authors described the use of more than one lowest anchor for scales with some using “not hurting,” “no hurt at all,” or “no discomfort” [ 42 , 50 , 55 ]. Other lowest anchors used included “I have no pain” [ 35 ] and “none” [ 45 ].…”

Section: Resultsmentioning

confidence: 99%

See 1 more Smart Citation

Chronic Pain Assessments in Children and Adolescents: A Systematic Literature Review of the Selection, Administration, Interpretation, and Reporting of Unidimensional Pain Intensity Scales

Lee

Rashid

Ghio

et al. 2017

Pain Research and Management

View full text Add to dashboard Cite

Background Advances in pain assessment approaches now indicate which measures should be used to capture chronic pain experiences in children and adolescents. However, there is little guidance on how these tools should best be administered and reported, such as which time frames to use or how pain scores are categorised as mild, moderate, or severe. Objective To synthesise current evidence on unidimensional, single-item pain intensity scale selection, administration, interpretation, and reporting. MethodsDatabases were searched (inception: 18 January 2016) for studies in which unidimensional pain intensity assessments were used with children and adolescents with chronic pain. Ten quality criteria were developed by modifying existing recommendations to evaluate the quality of administration of pain scales most commonly used with children. ResultsForty-six studies met the inclusion criteria. The highest score achieved was 7 out of a possible 10 (median: 5; IQR: 4–6). Usage of scales varied markedly in administrator/completer, highest anchors, number of successive assessments, and time referent periods used. Conclusions Findings suggest these scales are selected, administered, and interpreted inconsistently, even in studies of the same type. Furthermore, methods of administration are rarely reported or justified making it impossible to compare findings across studies. This article concludes by recommending criteria for the future reporting of paediatric chronic pain assessments in studies.

show abstract

Cutting the cord? Parenting emerging adults with chronic pain

Lunde

Fisher

Donovan

et al. 2022

Paediatric and Neonatal Pain

View full text Add to dashboard Cite

Chronic pain is a significant socio-economic and humanitarian burden affecting both children and adults. 1,2 With chronic pain occurring across the lifespan, many studies have focused on pain in children, adolescents, and adults while less is known specifically about pain during emerging adulthood. Research is gaining momentum, 3-5 but the experience of the emerging adult-parent dyad has not been considered in the context of chronic pain, particularly with the emergence of a parenting style described as helicopter parenting. Often defined

show abstract

Patient Versus Parental Perceptions about Pain and Disability in Children and Adolescents with a Variety of Chronic Pain Conditions

Abstract: While equal merit should ideally be given to pediatric chronic pain patients' self-reports and their parents' proxy reports of pain intensity and disability, it would appear that, as needed, pediatric patients or parents can offer a clinically valid, single clinical perspective.

Cited by 29 publications

References 57 publications

Use of the new pediatric PROMIS measures of pain and physical experiences for children with sickle cell disease

Use of the new pediatric PROMIS measures of pain and physical experiences for children with sickle cell disease

Chronic Pain Assessments in Children and Adolescents: A Systematic Literature Review of the Selection, Administration, Interpretation, and Reporting of Unidimensional Pain Intensity Scales

Cutting the cord? Parenting emerging adults with chronic pain

Contact Info

Product

Resources

About