Refinement of the Children's International Mucositis Evaluation Scale (ChIMES): Child and parent perspectives on understandability, content validity and acceptability

Tomlinson, Deborah; Treister, Nathaniel S.; Baggott, Christina; Judd, Peter; Hendershot, Eleanor; Maloney, Anne-Marie; Doyle, John; Feldman, Brian M.; Kwong, Karis; Sung, Lillian

doi:10.1016/j.ejon.2009.10.004

Cited by 27 publications

(35 citation statements)

References 24 publications

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“…Few pediatric oncology instrumentation studies report on measure, participant, item, or time point missingness 16, 19-21 , although such analyses may be particularly informative regarding the feasibility and acceptability of using selected measures in groups of children and adolescents with complex chronic illnesses such as cancer. We recommend that pediatric instrumentation studies include missingness analyses at the levels of measure, participant, item, and assessment time point.…”

Section: Discussionmentioning

confidence: 99%

Feasibility and Acceptability of the Patient-Reported Outcomes Measurement Information System Measures in Children and Adolescents in Active Cancer Treatment and Survivorship

et al. 2014

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Background Patient-reported outcomes (PROs) related to symptoms, function, and quality of life during and following cancer treatment can guide care for pediatric cancer patients. To advance the science of PROs, the National Institutes of Health funded the Patient Reported Outcomes Measurement Information System (PROMIS). Objective To assess feasibility and acceptability of the PROMIS pediatric measures, as defined by enrollment and attrition rates as well as missingness by measure, item, participant, and assessment time point. Methods 8-to-18 year olds participated in two studies: PROMIS I, a cross-sectional study of children in active cancer treatment or survivorship, and PROMIS II, a longitudinal study with 3 assessment time points for children receiving curative treatment. Results PROMIS I (n=200) and PROMIS II (n=94) had enrollment rates of 92.5% and 89.7%, respectively. For PROMIS I, measure missingness was acceptable (8% missed any measures) and was not related to other study variables. For PROMIS II, measure missingness was minimal (0.8%), and item-level missingness was relatively low. In general, items that were skipped asked about experiences that participants had not encountered in the past 7 days. Conclusions In both studies, the PROMIS instruments demonstrated good feasibility and acceptability among pediatric cancer patients. Overall, we had high enrollment, low attrition, and acceptable rates of measure and item missingness. Implications for Practice Our results demonstrate that PROMIS measures are acceptable to 8-to-18 year-olds in different points of cancer care and feasible for use in pediatric cancer inpatient and outpatient settings.

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Section: Discussionmentioning

confidence: 99%

Feasibility and Acceptability of the Patient-Reported Outcomes Measurement Information System Measures in Children and Adolescents in Active Cancer Treatment and Survivorship

et al. 2014

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“…Response options may also be represented by simple drawings of faces, with expressions that indicate neutrality or various degrees of positive or negative emotion (Fig. 5) [105,[117][118][119]. This "smiley face" approach has been recommended for use with young children by 80% of the participants in a Delphi panel conducted during the development of the KIDSCREEN quality-of-life measure [111].…”

Section: Pictorial Representationsmentioning

confidence: 99%

Pediatric Patient-Reported Outcome Instruments for Research to Support Medical Product Labeling: Report of the ISPOR PRO Good Research Practices for the Assessment of Children and Adolescents Task Force

et al. 2013

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Additional research is needed to provide methodological guidance for future studies, especially for studies involving young children and parents' observational reports. As PRO data are increasingly used to support pediatric labeling claims, there will be more information regarding the standards by which these instruments will be judged. The use of PRO instruments in clinical trials and regulatory submissions will help ensure that children's experience of disease and treatment are accurately represented and considered in regulatory decisions.

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“…In terms of mucositis prevention, ACCL1031 is determining whether topical caphosol, a supersaturated calcium and phosphate solution widely used in many HSCT centers, reduces oral mucositis in children undergoing HSCT. The measurement of mucositis is problematic in children with cancer and ACCL1031 will also serve to validate a pediatric specific measure of mucositis termed the Children's International Mucositis Evaluation Scale 33, 34. Future efforts in mucositis prevention will continue to target the highest risk children such as children undergoing HSCT.…”

Section: Strategic Approachmentioning

confidence: 99%

Children's Oncology Group's 2013 blueprint for research: Cancer control and supportive care

Sung

Zaoutis

Ullrich

et al. 2012

Pediatric Blood & Cancer

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In cancer control research, the objective is to reduce overall morbidity and mortality by decreasing acute and delayed treatment-related toxicities in all children with cancer. To date, the Children’s Oncology Group (COG) has focused on infection, neurocognition, quality of life (QoL), and nutrition/antiemetics. COG is conducting randomized controlled trials (RCTs) to determine prophylaxis strategies that will reduce infections in high-risk populations. Two RCTs are determining if modafinil or computerized cognitive training improve cognitive functioning in pediatric brain tumor patients. QoL is being assessed in acute leukemia patients. Improved supportive care outcomes will only occur when the most effective interventions are established.

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Refinement of the Children's International Mucositis Evaluation Scale (ChIMES): Child and parent perspectives on understandability, content validity and acceptability

Cited by 27 publications

References 24 publications

Feasibility and Acceptability of the Patient-Reported Outcomes Measurement Information System Measures in Children and Adolescents in Active Cancer Treatment and Survivorship

Feasibility and Acceptability of the Patient-Reported Outcomes Measurement Information System Measures in Children and Adolescents in Active Cancer Treatment and Survivorship

Pediatric Patient-Reported Outcome Instruments for Research to Support Medical Product Labeling: Report of the ISPOR PRO Good Research Practices for the Assessment of Children and Adolescents Task Force

Children's Oncology Group's 2013 blueprint for research: Cancer control and supportive care

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