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This is a plain English summary of an original research article. The views expressed are those of the author(s) and reviewer(s) at the time of publication.

Helping children and parents to manage long-term conditions like asthma may reduce their need for emergency care, and is unlikely to reduce children’s quality of life.

This NIHR review found that structured professional help with self-care, including online support, provision of care plans, case management and face-to-face education, was linked to small increases in quality of life scores and fewer emergency department visits. However, there was no clear evidence that supported self-care reduced hospital admissions or overall costs.

Most of the 97 studies reviewed included children with asthma (66 studies) or mental health conditions (18 studies). Not all were high-quality studies, and the review covered very different interventions, which makes it hard to compare approaches.

The findings suggest there is little chance of self-care support causing harm to children with long-term conditions, although that could not be definitively ruled out. However, there is also little evidence that supported self-care can make a substantial difference to healthcare costs.

Why was this study needed?

In the UK, 15% of children aged between 11 and 15 experience a long-term illness or disability, and 10% have a mental health problem. As many long-term conditions are life-long, these children represent substantial ongoing health costs for the NHS. Finding ways of reducing their healthcare needs, without compromising their health or quality of life, could have a positive impact on future NHS demand.

Self-care support is where healthcare professionals help people take control of their illness. This is through education, improving skills and helping them to develop psychological and social resources.

Previous research into self-care support has tended to look at clinical outcomes, often in the short to medium term.

This study intended to explore the effects of self-care support on children’s quality of life and healthcare costs.

What did this study do?

This systematic review and meta-analysis included 97 studies, 14 from the UK.

They assessed 114 different interventions. They ranged from one to several educational or psychological sessions at school, home or hospital, to full multi-disciplinary case management. The support was provided by nurses, social workers, psychologists and teachers. Only 4% of the support was just through technology, the rest involved face-to-face sessions. Most self-care support interventions also involved the child’s adult caregiver. The average age of the child was 10 years.

The researchers plotted the effect of supported self-care on quality of life and healthcare use, to demonstrate whether one came at the expense of the other.

Though 88 of the studies were randomised controlled trials, only 37 were judged as high quality.

What did it find?

  • Self-care support was linked to small improvements in quality of life (effect size ‑0.17, 95% confidence interval [CI] -0.23 to -0.11; 77 comparisons).
  • Self-care support was also linked to small reductions in emergency department visits (effect size -0.11, 95% CI ‑0.17 to ‑0.04; 57 comparisons).
  • There was no difference in hospital admissions (effect size -0.05, 95% CI -0.12 to 0.03; 65 comparisons).
  • Health services costs also did not differ (effect size -0.11, 95% CI -0.47 to 0.25; 10 comparisons). There was comparatively little data looking at health service costs, and these results varied greatly between studies. The cost of the interventions was not provided.

What does current guidance say on this issue?

Self-care support is advocated for children with asthma in the SIGN/BTS 2016 asthma management guideline and NICE 2017 guideline. Self-management education should include a written personalised asthma action plan. This is completed by the GP or asthma nurse with the child if over the age of five and family and carers where appropriate. This should be supported by a regular professional review.

Regular support and education to improve self-management are integral to the provision of diabetes care to young people as outlined in the NICE 2015 guideline.

What are the implications?

Though this study did not find that self-care support for children with long-term conditions made a significant impact on future healthcare costs, it is difficult to form any firm conclusions. This is because there has been a recent emphasis on education about the long-term condition, triggers and best self-management, so this is likely to be a component of usual care.

The huge range of interventions, intensity, setting and type of healthcare professional providing the increased support in these studies also reduces the ability to pinpoint which aspects may be most important.

Continuing use of self-care support, as advocated by current guidelines, is unlikely to compromise care. Optimal levels of support are likely to differ between individuals and type of long-term condition.

Citation and Funding

Bee P, Pedley R, Rithalia A, et al. Self-care support for children and adolescents with long-term conditions: the REfOCUS evidence synthesis. Health Serv Deliv Res. 2018;6(3).

This project was funded by the National Institute for Health Research Health Services and Delivery Research programme.

Bibliography

NICE. Asthma: diagnosis, monitoring and chronic asthma management. NG80. London: National Institute for Health and Care Research; 2017.

NICE. Diabetes (type 1 and type 2) in children and young people: diagnosis and management. NG18. London: National Institute for Health and Care Research; 2016.

Produced by the University of Southampton and Bazian on behalf of NIHR through the NIHR Dissemination Centre


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