Healthcare use for children with complex needs: using routine health data linked to a multiethnic, ongoing birth cohort

Bishop, Chrissy; Small, Neil; Parslow, Roger C; Kelly, Brian

doi:10.1136/bmjopen-2017-018419

Cited by 10 publications

(9 citation statements)

References 34 publications

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“…Studies of chronic and complex conditions such as congenital anomalies,18 asthma,19 and COPD20 have successfully employed UK administrative data to investigate health care service use by linking routinely-collected data from primary and secondary care settings. A growing body of studies in Australia21–23 have linked a range of administrative health records (including register data and hospital admissions) to explore CP health care questions, and studies from the USA24,25 have used administrative records to determine CP health care costs.…”

Section: Introductionmentioning

confidence: 99%

<p>Identifying cerebral palsy from routinely-collected data in England and Wales</p>

Carter¹,

Bennett²,

Bethel³

et al. 2019

CLEP

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Purpose: An observational study using routinely-collected health care data to describe the extent to which children and young people (CYP) with cerebral palsy (CP) can be identified and the prevalence of CP can be estimated. Patients and methods: Routinely-collected anonymized data, for CYP (aged 0–25 years old between 1 January 2004 and 31 December 2014) were analyzed in two linked datasets, from England and Wales respectively. Datasets included National Health Service; General Practitioner (GP), inpatients, outpatients, and national mortality records. CP was identified using ICD-10 codes G80.0–G83.3 and equivalent Read v2 codes. Ascertainment rates of CP were identified for each data source and compared between countries. Frequency and consistency of coding were investigated, and prevalence of CP estimated. Results: A total of 7,113 and 5,218 CYP with CP were identified in the English and Welsh datasets respectively. Whilst the majority of CYP with CP would be expected to attend their GP, 65.3% (4,646/7,113) of English and 65.1% (3,396/5,218) of Welsh cases were ascertained from GP datasets. Further cases were identified solely in inpatient datasets (2,410 in England, 1,813 in Wales). Few cases were coded for CP within outpatient datasets. Four character codes that specified CP type were rarely used; one in five health care records were coded both with G80 codes (explicitly CP) and with G81–83 codes (other paralytic syndromes) or equivalent Read codes. Estimated period prevalence of CYP with CP was 2.5–3.4 per 1,000 in England and 2.4–3.2 per 1,000 in Wales. Conclusion: In England and Wales, coding of CP in routine data is infrequent, inconsistent, non-specific, and difficult to isolate from conditions with similar physical signs. Yet the prevalence estimates of CP were similar to those reported elsewhere. To optimize case recognition we recommend improved coding quality and the use of both primary and secondary care datasets as a minimum.

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Section: Introductionmentioning

confidence: 99%

<p>Identifying cerebral palsy from routinely-collected data in England and Wales</p>

Carter¹,

Bennett²,

Bethel³

et al. 2019

CLEP

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“…For children with congenital abnormalities, higher maternal education was associated with lower levels of primary care consultations and hospital service use—potentially a consequence of less educated parents requiring additional help from medical professionals to manage CYP complex needs. 30 In contrast, lower educational attainment of the household reference person was associated with CYP having less time registered with an NHS dentist, 26 and where the reference person had no qualifications, more than twice was spent on endodontics for the CYP than where a degree or greater was obtained. 25 …”

Section: Resultsmentioning

confidence: 98%

Patient and caregiver characteristics associated with differential use of primary care for children and young people in the UK: a scoping review

Herbert,

Herlitz,

Woodman

et al. 2024

BMJ Open

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ObjectiveTo systematically map evidence to answer the research question:What is the relationship between the characteristics of children and young people (CYP) or their caregivers and primary care service use in the UK, taking into account underlying healthcare needs?DesignScoping review.SettingPrimary care.Eligibility criteriaEnglish-language quantitative or mixed-methods studies published between 2012 and 2022.Data sourcesMedline, Embase, Scopus and Web of Science Social Sciences Citation Index, and grey literature.Results22 eligible studies were identified, covering general practice (n=14), dental health (n=4), child mental health (MN) services (n=3) and immunisation (n=1). Only eight studies (36%) controlled for variables associated with healthcare need (eg, age, birth weight and long-term conditions). In these, evidence of horizontal inequity in primary care use was reported for CYP living in deprived areas in England, with and without complex needs. Horizontal inequity was also identified in primary care MN referrals for CYP in England identifying as mixed-race, Asian or black ethnicity, compared with their white British peers. No evidence of horizontal inequity was observed, however, in primary care use for CYP in England exposed to parental depression, or for CYP children from low-income households in Scotland. Increasing CYP’s age was associated with decreasing primary care use across included studies. No studies were found regarding CYP from Gypsy or Traveller communities, children in care, or those with disabilities or special educational needs.ConclusionsThere is evidence that socioeconomic factors impact on CYP’s primary care use, in particular age, ethnicity and deprivation. However, better quality evidence is required to evaluate horizontal inequity in use and address knowledge gaps regarding primary care use for vulnerable CYP populations and the impact of policy and practice related ‘supply side’ of primary care.

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“…Open access children without CAs. [9][10][11][12] Although children are less affected by SARS-CoV-2 infection than adults, 13 Down syndrome has been indicated as a risk factor of severe disease and mortality, 14 15 and children with underlying conditions may be at increased risk of infection. 16 It is crucial to document the healthcare experiences of children with CAs during this period of increased pressure on healthcare systems, especially as they represent a vulnerable population.…”

Section: Strengths and Limitations Of This Studymentioning

confidence: 99%

“…Congenital anomalies (CAs) are a range of conditions that are present from birth and remain a leading cause of childhood morbidity and long-term disability 6 7. Children with CAs require regular clinical follow-up,8 including more frequent primary care appointments, hospital admissions and surgeries than children without CAs 9–12. Although children are less affected by SARS-CoV-2 infection than adults,13 Down syndrome has been indicated as a risk factor of severe disease and mortality,14 15 and children with underlying conditions may be at increased risk of infection 16.…”

Section: Introductionmentioning

confidence: 99%

COVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare services

et al. 2022

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ObjectiveTo survey parents and carers of children with a congenital anomaly across Europe about their experiences of healthcare services and support during the COVID-19 pandemic.DesignCross-sectional study.SettingOnline survey in 10 European countries, open from 8 March 2021 to 14 July 2021.Population1070 parents and carers of children aged 0–10 years with a cleft lip, spina bifida, congenital heart defect (CHD) requiring surgery and/or Down syndrome.Main outcome measuresParental views about: the provision of care for their child (cancellation/postponement of appointments, virtual appointments, access to medication), the impact of disruptions to healthcare on their child’s health and well-being, and satisfaction with support from medical sources, organisations and close relationships.ResultsDisruptions to healthcare appointments were significantly higher (p<0.001) in the UK and Poland, with approximately two-thirds of participants reporting ‘cancelled or postponed’ tests (67/101; 256/389) and procedures compared with approximately 20% in Germany (13/74) and Belgium/Netherlands (11/55). A third of participants in the UK and Poland reported ‘cancelled or postponed’ surgeries (22/72; 98/266) compared with only 8% in Germany (5/64). In Poland, 43% (136/314) of parents reported that changes to their child’s ongoing treatment had moderately to severely affected their child’s health, significantly higher than all other countries (p<0.001). Satisfaction ratings for support from general practitioners were lowest in the UK and Poland, and lowest in Poland and Italy for specialist doctors and nurses.ConclusionA large proportion of participants reported disruptions to healthcare during the pandemic, which for some had a significant impact on their child’s health. Regional differences in disruptions raise questions about the competence of certain healthcare systems to meet the needs of this vulnerable group of patients and indicate improvements should be strived for in some regions.

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Healthcare use for children with complex needs: using routine health data linked to a multiethnic, ongoing birth cohort

Cited by 10 publications

References 34 publications

<p>Identifying cerebral palsy from routinely-collected data in England and Wales</p>

<p>Identifying cerebral palsy from routinely-collected data in England and Wales</p>

Patient and caregiver characteristics associated with differential use of primary care for children and young people in the UK: a scoping review

COVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare services

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