A Systematic Review of Generic Multidimensional Patient-Reported Outcome Measures for Children, Part II: Evaluation of Psychometric Performance of English-Language Versions in a General Population

Janssens, Astrid; Rogers, Morwenna; Thompson-Coon, Jo; Allen, Karen; Green, Colin; Jenkinson, Crispin; Tennant, Alan; Logan, Stuart; Morris, Christopher

doi:10.1016/j.jval.2015.01.004

Cited by 40 publications

(30 citation statements)

References 93 publications

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“…Our search preceded the search for studies examining measurement properties in the second of this pair of articles [86], hence will be a couple of years old by the time of publication. Key purposes of reporting dates in systematic review articles are for transparency and to inform those who might want to update reviews in the future, and we remain aware at the time of writing of any other PROMs that would be eligible.…”

Section: Discussionmentioning

confidence: 99%

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A Systematic Review of Generic Multidimensional Patient-Reported Outcome Measures for Children, Part I: Descriptive Characteristics

et al. 2015

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Section: Discussionmentioning

confidence: 99%

“…We have carried out such an appraisal for English-language versions of generic multidimensional PROMs in non-condition-specific groups in a related second article [86].…”

Section: Discussionmentioning

confidence: 99%

A Systematic Review of Generic Multidimensional Patient-Reported Outcome Measures for Children, Part I: Descriptive Characteristics

et al. 2015

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“…There appears a dearth of evaluations of the measurement properties of preference‐based measures in children with neurodisability, adding to the lack of evidence for these instruments in general populations . Internal consistency may conflict with the underlying theory of health economic instruments, but the properties of face, content and construct validity, and test–retest reliability remain requisite.…”

Section: Discussionmentioning

confidence: 99%

“…The information from this review makes it difficult to recommend a multidimensional PROM for use in paediatric neurodisability based on measurement properties established in relevant conditions. Our review of evaluations of generic multidimensional PROMs in general population samples identified 41 potentially eligible PROMs, and identified 126 papers that reported evidence of the measurement properties of 25 PROMs using English‐language versions in general population samples . Although robust evidence was lacking for one or more properties for all PROMs, there was evidence to support more measurement properties for the CHIP, Healthy Pathways, KIDSCREEN, and MSLSS.…”

Section: Discussionmentioning

confidence: 99%

Measurement properties of multidimensional patient‐reported outcome measures in neurodisability: a systematic review of evaluation studies

Janssens

Rogers

Gumm

et al. 2015

Develop Med Child Neuro

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AimTo identify and appraise the quality of studies that primarily assessed the measurement properties of English language versions of multidimensional patient‐reported outcome measures (PROMs) when evaluated with children with neurodisability, and to summarize this evidence.Method MEDLINE, Embase, PsycINFO, CINAHL, AMED, and the National Health Service Economic Evaluation Database were searched. The methodological quality of the papers was assessed using the COnsensus‐based Standards for selection of health Measurement INstruments checklist. Evidence of content validity, construct validity, internal consistency, test–retest reliability, proxy reliability, responsiveness, and precision was extracted and judged against standardized reference criteria.ResultsWe identified 48 studies of mostly fair to good methodological quality: 37 papers for seven generic PROMs (CHIP, CHQ, CQoL, KIDSCREEN, PedsQL, SLSS, and YQOL), seven papers for two chronic–generic PROMs (DISABKIDS and Neuro‐QOL), and four papers for three preference‐based measures (HUI, EQ‐5D‐Y, and CHSCS‐PS).InterpretationOn the basis of this appraisal, the DISABKIDS appears to have more supportive evidence in samples of children with neurodisability. The overall lack of evidence for responsiveness and measurement error is a concern when using these instruments to measure change, or to interpret the findings of studies in which these PROMs have been used to assess change.

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“…However, while there are many PROM tools for children,22 23 there are few validated PREMs, and these tend to assess children's experiences of a specific hospital visit (eg, the Picker Institute's acute paediatric surveys).…”

Section: Discussionmentioning

confidence: 99%

New patient-reported experience measure for children with allergic disease: development, validation and results from integrated care

et al. 2016

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Objectives: To develop and validate a new allergy-specific Patient-Reported Experience Measure (PREM) for children and their parents, and to collect feedback in an integrated care setting.Design: Two allergy-specific PREMs were produced using focus-groups, cognitive testing, two prospective validation-studies (collaboration: Royal College of Paediatrics and Child Health, Picker Institute Europe, Imperial College/London): "Your Allergy Care", for children age 8-16 years; "Your Child's Allergy Care", for parents of children aged 0-7 years.Setting: Community event, primary/secondary/tertiary allergy care-settings. Main outcome measures:Performance of PREMs in validation-study; reported experience of allergy care. Participants: 687 children with allergic conditions and their parents/carersResults: In total 687 questionnaires were completed; 503/687 (253 child; 250 parent) for the final survey. In both surveys demographic variations were not associated with differences in results.Although 71% reported ≥1 allergic condition (food allergy/eczema/hayfever/asthma), 62% of patients required multiple visits before receiving final diagnosis. Overall, patient experience was good for communication with patient/parent, competence, confidence in ability and 73% felt looked after "very well", 23% "quite well". Areas for improvement included communication with nurseries/schools, more information on side-effects, allergic conditions, allergen/irritant-avoidance. Allergy care in primary/emergency caresettings was associated with higher problem-scores (worse experience) than in specialist clinics. 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 Allergic conditions affect up to a third of children in the United Kingdom at some point during childhood making them the most common chronic childhood ailment(1). Many children suffer from multiple allergic co-morbidities, such as eczema, asthma, food allergies and hayfever. Access to specialist allergy care is difficult due to under-provision of services, as outlined in successive national reports(2-5). Once accessed, there is evidence of considerable variability in the quality of allergy care, which is likely to negatively impact on clinical outcomes, patients' experiences and safety(6, 7).In response, the Department of Health commissioned the Royal College of Paediatrics and Child Health (RCPCH) to define care-pathways for children with allergic conditions, including the development of allergy-specific Patient Reported Experience Measures (PREMs)(8).PREMs allow patients to report on their experience of care rather than health outcomes (Patient Reported Outcome Measures, PROMs, e.g. ...

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A Systematic Review of Generic Multidimensional Patient-Reported Outcome Measures for Children, Part II: Evaluation of Psychometric Performance of English-Language Versions in a General Population

Cited by 40 publications

References 93 publications

A Systematic Review of Generic Multidimensional Patient-Reported Outcome Measures for Children, Part I: Descriptive Characteristics

A Systematic Review of Generic Multidimensional Patient-Reported Outcome Measures for Children, Part I: Descriptive Characteristics

Measurement properties of multidimensional patient‐reported outcome measures in neurodisability: a systematic review of evaluation studies

New patient-reported experience measure for children with allergic disease: development, validation and results from integrated care

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