ArticleBMC pediatrics2015
Scoping review of patient- and family-oriented outcomes and measures for chronic pediatric disease.
Article in BMC pediatrics, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.
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.
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.
Who cites it
13 citing papers in PubMed, 25 citations in OpenAlex.
- Rare, epilepsy-related disorder including intellectual disability - A scoping review of caregivers' identified information needs.Journal of intellectual disabilities : JOID · 2022Article
- Family Experiences with Care for Children with Inherited Metabolic Diseases in Canada: A Cross-Sectional Survey.The patient · 2022Article
- Money matters: a multicenter cross-sectional study of depressive symptoms among the caregivers of children on peritoneal dialysis in Mainland China.BMC nephrology · 2020Article
- Coping with Wolf-Hirschhorn syndrome: quality of life and psychosocial features of family carers.Orphanet journal of rare diseases · 2020Article
- Family-Centered Management of Birth Defects Diagnosis and Referral in Hospital Settings in Florida.Maternal and child health journal · 2020Article
- Improving health, wellbeing and parenting skills in parents of children with special health care needs and medical complexity - a scoping review.BMC pediatrics · 2019Article
- Seizure burden in severe early-life epilepsy: Perspectives from parents.Epilepsia open · 2019Article
- Patient and observer reported outcome measures to evaluate health-related quality of life in inherited metabolic diseases: a scoping review.Orphanet journal of rare diseases · 2018Article
- Article
- Experiences of caregivers of children with inherited metabolic diseases: a qualitative study.Orphanet journal of rare diseases · 2016Article
- Child and family experiences with inborn errors of metabolism: a qualitative interview study with representatives of patient groups.Journal of inherited metabolic disease · 2016Article
- Development of the parental needs scale for rare diseases: a tool for measuring the supportive care needs of parents caring for a child with a rare disease.Journal of multidisciplinary healthcare · 2016Article
- Epilepsy Benchmarks Area IV: Limit or Prevent Adverse Consequence of Seizures and Their Treatment Across the Life Span.Epilepsy currentsArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
22 authors at 12 institutions in 3 countries.
Funding
Abstract
backgroundImprovements in health care for children with chronic diseases must be informed by research that emphasizes outcomes of importance to patients and families. To support a program of research in the field of rare inborn errors of metabolism (IEM), we conducted a broad scoping review of primary studies that: (i) focused on chronic pediatric diseases similar to IEM in etiology or manifestations and in complexity of management; (ii) reported patient- and/or family-oriented outcomes; and (iii) measured these outcomes using self-administered tools.
methodsWe developed a comprehensive review protocol and implemented an electronic search strategy to identify relevant citations in Medline, EMBASE, DARE and Cochrane. Two reviewers applied pre-specified criteria to titles/abstracts using a liberal accelerated approach. Articles eligible for full-text review were screened by two independent reviewers with discrepancies resolved by consensus. One researcher abstracted data on study characteristics, patient- and family-oriented outcomes, and self-administered measures. Data were validated by a second researcher.
results4,118 citations were screened with 304 articles included. Across all included reports, the most-represented diseases were diabetes (35%), cerebral palsy (23%) and epilepsy (18%). We identified 43 unique patient- and family-oriented outcomes from among five emergent domains, with mental health outcomes appearing most frequently. The studies reported the use of 405 independent self-administered measures of these outcomes.
conclusionsPatient- and family-oriented research investigating chronic pediatric diseases emphasizes mental health and appears to be relatively well-developed in the diabetes literature. Future research can build on this foundation while identifying additional outcomes that are priorities for patients and families.
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Registered trials
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.