Evidence map›Paper›PMID 31113443›Full record

ArticlePediatric rheumatology online journal2019

Development of a benchmarking toolkit for adolescent and young adult rheumatology services (BeTAR).

Ran A Cai, Hema Chaplin, Polly Livermore, Martin Lee, Debajit Sen, Lucy R Wedderburn, Nick Wilkinson, Rachel Jeffery, Andrea Kempa, Imogen Norton and 3 more

Open access · goldAbstract read
In one paragraph

Article in Pediatric rheumatology online journal, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
2.0field-weighted citation impact, top 13% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

5 citing papers in PubMed, 8 citations in OpenAlex.

  1. Article
  2. Article
  3. Review
  4. Review
  5. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

13 authors at 8 institutions in 1 country.

Ran A CaiArthritis Research UK Centre for Adolescent Rheumatology, University College London, London, UK. a.cai@ucl.ac.uk.ORCID http://orcid.org/0000-0001-9278-8066
Hema ChaplinHealth Psychology Section, Psychology Department, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.
Polly LivermoreArthritis Research UK Centre for Adolescent Rheumatology, University College London, London, UK.
Martin LeeRheumatology Department, Newcastle Upon Tyne Hospitals, Newcastle, UK.
Debajit SenArthritis Research UK Centre for Adolescent Rheumatology, University College London, London, UK.
Lucy R WedderburnArthritis Research UK Centre for Adolescent Rheumatology, University College London, London, UK.
Nick WilkinsonPaediatric Rheumatology Department, Evelina London Children's Hospital, Guys and St Thomas' NHS Foundation Trust, London, UK.
Rachel JefferyRheumatology, Northampton General Hospital NHS Trust, Northampton, UK.
Andrea KempaRheumatology, Northampton General Hospital NHS Trust, Northampton, UK.
Imogen NortonRheumatology, Northampton General Hospital NHS Trust, Northampton, UK.
Rachel TattersallRheumatology Department, Royal Hallamshire Hospital, Sheffield, UK and Sheffield Children's Hospital, Sheffield, UK.
Yiannis IoannouRheumatology, University College London Hospitals, London, UK.
Despina EleftheriouArthritis Research UK Centre for Adolescent Rheumatology, University College London, London, UK.
Great Ormond Street Hospital for Children NHS Foundation Trust · GBNorthampton General Hospital NHS Trust · GBRoyal London Hospital · GBArthritis UK · GBGuy's and St Thomas' NHS Foundation Trust · GBKing's College London · GBNewcastle upon Tyne Hospital · GBRoyal Hallamshire Hospital · GB

Funding

Arthritis Research UK 20164Arthritis Research UK 21411Arthritis Research UK 21593Department of Health ICA-CDRF-2016-02-032Versus Arthritis 21411
6 · The paper itself

Abstract

backgroundYoung people (YP; 12-24 years old) with rheumatic diseases face many challenges associated with chronic illness in addition to the physiological and psychosocial changes of adolescence. Timely access to developmentally appropriate multidisciplinary care is key to successfully managing rheumatic diseases, but gaps in the care of this vulnerable age group still exist. This study aimed to develop a benchmarking toolkit to enable comparative evaluation of YP rheumatology services in order to promote best practice and reduce variations in service delivery.

methodsA staged and consultative method was used across a broad group of stakeholders in the UK (YP, parents/other carers, and healthcare professionals, HCPs) to develop this toolkit, with reference to pre-existing standards of YP-friendly healthcare. Eighty-seven YP (median age 19 years, range 12-24 years) and 26 rheumatology HCPs with 1-34 years of experience caring for YP have participated.

resultsThirty quality criteria were identified, which were grouped into four main domains: assessment and treatment, information and involvement, accessibility and environment, and continuity of care. Two toolkit versions, one to be completed by HCPs and one to be completed by patients, were developed. These were further refined by relevant groups and face validity was confirmed.

conclusionsA toolkit has been developed to systematically evaluate and benchmark YP rheumatology services, which is key in setting standards of care, identifying targets for improvement and facilitating research. Engagement from YP, clinical teams, and commissioners with this tool should facilitate investigation of variability in levels of care and drive quality improvement.

Indexed as

AdolescentAdolescent Health ServicesAdultBenchmarkingChildChild Health ServicesFemaleHumansMaleQuality of Health CareReproducibility of ResultsRheumatic DiseasesTransition to Adult CareUnited KingdomYoung AdultAdolescent rheumatologyBenchmarkingHealthcare servicesPatient involvementQuality improvementStandards of careToolkit

Identifiers

PMID31113443
PMCPMC6528251
OpenAlexW2947890058

What OpenQuestion holds

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LicenceCC BY
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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.