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We all give lip service to health-related quality of life (HRQOL), but few of us afford it the weight it deserves outside its use as an outcome measure in research. It is defined (very broadly) by the WHO as a ‘child’s goals, expectations, standards or concerns about their overall health and related domains’.1 We receive outcome information like this constantly, but rarely process it fully and given that children from 7 years upwards are capable of reliably reporting their status should, I’m convinced, be doing more. There are a number of scores in use, both general (Peds QL the most widely used) and disease specific ones2 and, given the quality of health (provision and experience) flavour in several of this month’s papers (the theme to my choices) got me thinking how I could incorporate the philosophy (if not the formal scoring) better on a day to day basis.
Before moving on though, I need to make two announcements. The first is to congratulate Russell Viner on his success in the recent RCPCH presidential election. The second is to let you know about two new associate editors from the US. Cynthia Mollen, Chief of Pediatric ED and Donna Stephenson, Assistant Professor in Neurology are both based at the Children’s Hospital in Philadelphia. It is a privilege to have them involved. I know they will lend depth and breadth to the journal.
Emergency department load
Despite the number of alternatives to emergency department (ED) care, the daily wave of ED presentations (up 30% over the last 10 years) has placed services under unprecedented pressure. It isn’t just the hospitals themselves, but families too that feel the strain. Ironically, there have never been more out of hospital alternatives than at present which include out of hours GPs, nurse practitioners, walk in centres and community pharmacies. In a neatly conceived model and accompanying editorial ( see pages 128 and 117 ), Viner and colleagues estimate the proportion of 3000 children seen in 6 London EDs which could have been managed equally well out of hospital. That many could have been is unsurprising, though the scale (an estimated 70%) is sobering. As in all such estimates, several assumptions were necessary, but, these notwithstanding, the issue appears primarily to be one of parental perception of care and habituation.
Adolescent health: new developments in chronic fatigue
Many of us will be loosely familiar with the term Lightning Process (LP), a neurolinguistic programming strategy which has been used adjunctively for a number of conditions including Chronic Fatigue Syndrome (CFS). Crawley and colleagues ( see page 155 ) tested whether LP in conjunction with specialist CFS treatment against standard treatment alone in a trial involving 100 children aged 12 to 18 years. They found significantly better physical function (measured by the SF-36-PFS) and lower fatigue and anxiety and 6 and 12 months. This thought-provoking finding won’t, of course be the end of the story as it won’t be the panacea for all and the cost effectiveness needs to be assessed more fully.
Quality improvement: Outpatient Parenteral Antimicrobial Therapy (OPAT)
Though early ambulatory care (hospital in the home or HITH) for relatively well children receiving extended courses of antibiotics has been practised for some time, it is not without risks such as inappropriate dosing, duration of treatment and line complications. The relatively recent introduction of formal OPAT (hospital-at-home) teams including infectious disease expertise has unequivocally enhanced the stringency of the process. Mace’s study from Western Australia ( see page 155 ) comparing outcomes in the pre HHIT and post HHIT eras corroborates the importance of supervision showing that readmission rates and unnecessarily prolonged treatment and adherence all significantly improved.
Quality of life in congenital heart disease
The incidence of congenital heart disease in Asia is much higher than in the US and Europe but the effect on the related quality of life has received little attention. Raj and colleagues’ study from South India ( see page 170 ) addresses this gap. Using the PedsQL score, they found significantly worse QoL scores across all the domains (physical, emotional, social and cognitive) in children with unoperated CHD. Interestingly the class of CHD (cyanotic or non-cyanotic, increased or decreased pulmonary flow) did not predict scores. These were young children so the scores necessarily parents’ impressions but, in some ways this makes the findings more informative in terms of targeting interventions: would enhancing parents’ awareness alter their perception of degree of illness?
Thanks for bearing with me and enjoy the rest of this month’s papers.
Provenance and peer review Commissioned; internally peer reviewed.