60 years of DMCN
Developmental Medicine & Child Neurology turns 60 this year! To mark the occasion, we will be looking back through the archives and highlighting a key paper per year from 1958 – which we will make free to read! The papers have been carefully selected by members of our Editorial Board who have offered some thoughts on the chosen paper below.
1958: On the Influence of Abnormal Parturition, Difficult Labours, Premature Birth, and Asphyxia Neonatorum, on the Mental and Physical Condition of the Child, Especially in Relation to Deformities by W J Little.
Selected by Peter Rosenbaum: ‘This first choice is a no-brainer! In volume 1, number 1, following a brief introduction to Dr Little, this was the first paper published in what was originally, before DMCN, the CP Bulletin. This is the classic and likely the first report of what we all know as ‘CP’. There is a footnote acknowledgement that the paper is being “Reprinted by kind permission of the Editor of the Proceedings of the Royal Society of Medicine.* Trans. Obstet. Soc. Lond., 1861-62. 3, 293.” It would be interesting to know how many times the 1861 paper has since been reproduced!’
1959: The Little Club: Memorandum on Terminology and Classification of “Cerebral Palsy” by Ronald C Mac Keith, Ian C K Mackenzie, and Paul E Polani.
Selected by Peter Rosenbaum: ‘My choice for the second year is a paper that shows that “Plus ça change, plus c’est la même chose!” As one of several dozen people who met in Bethesda in 2004 to (re)consider these thorny issues, I am both humbled by how thoughtful the fathers of our field were (I believe that they were [almost] all ‘fathers’) and fascinated by where we have (classifications) and have not (definition) made progress on these perennially thorny issues!’
1960: Results of Physical Treatment in Cerebral Palsy by B Karlsson, B Nauman, and L Gardestrom.
Selected by Peter Rosenbaum: ‘By 1960, things in our field had become more complex, and there were many more papers on many more topics than previously. There were many papers and commentaries on neurological aspects of CP, and on orthopaedic challenges, and the first papers in this journal on obstetrical issues of childhood impairment. However, my choice for a paper to note is Results of Physical Treatment in Cerebral Palsy. The abstract of the paper reads: “There is no completely objective way of determining the results of physical therapy in cerebral palsy. This attempt suggests that if the spastic tetraplegics are excluded the normally endowed and adequately treated subjects comprise an ‘Elite’ group. Intensive treatment seems to be particularly valuable in spastic hemiplegia and paraplegia, but less important in athetosis and ataxia. In any event, treatment rarely turns a disabled child into a normal one.”
As with other choices made with the benefit of almost 60 years of hindsight, we can appreciate that the right questions were being addressed but the toolbox didn’t yet have the tools to address these fundamentally important issues in our field. At the same time, we can appreciate that we have made some progress since 1960!’
1961: Assessment, Training and Employment of Adolescents and Young Adults with Cerebral Palsy
1. An Introductory Review by Elspeth Stephen.
2. What Facilities are Needed by R C Mac Keith and M C O Bax.
3. Facilities Now Available by Miss M R Morgan.
Selected by Peter Rosenbaum: ‘I was sorely tempted to cite The Dental Care of the Cerebral Palsied Child by J.N. Swallow because of the poetry of the author’s name, but there is a much more important issue – again one we have (re)discovered after a long silence – illustrated by these three consecutive companion pieces. In the past decade of the 21st century, there has been a growing interest in the issues associated with ‘transition to adulthood’ among young people with chronic conditions. It is not a surprise to see that Ronnie Mac Keith and Martin Bax were ‘there’ a long time ago, as illustrated by this focus on the needs of young people with CP to make successful adult lives for themselves.’
1962: The Apgar Evaluation of the Newborn Infant by Herbert Barrie.
Selected by Peter Rosenbaum: ‘This was the very early period when hydrocephalus and spina bifida became major clinical concerns in the world of childhood disability. This year’s journals were full of reports and studies on these conditions, which one assumes were relatively new as challenges for clinicians beyond the neonatal period. This interest might reflect the then-recent development of the newly developed Holter valve and associated shunt, which allowed people to manage hydrocephalus more effectively than had been possible until then. However, my choice for 1962 is to highlight The Apgar Evaluation of the Newborn Infant by Herbert Barrie. In today’s wired world it is impossible to imagine a nine-year knowledge translation gap – between Apgar’s original report in 1953 and this paper in 1962 bringing the Apgar score to people’s attention. This report highlighted for me how important Knowledge Translation has become, and at the same time the importance of active, targeted sharing rather than simply posting things and expecting the world to find, read, understand and apply whatever the messages are!’
1963: The Pultibec System for the Medical Assessment of Handicapped Children by R L Lindon.
Selected by Peter Rosenbaum: ‘Dr. Lindon was the Medical Officer to Martindale Special Units and School, and his work illustrates how a community-based professional, outside an academic centre, can contribute valuable insights into our field. The Pultibec system that Lindon adapted from an adult rehabilitation framework was notable for the philosophy that underlay it. To cite but two brief comments from page 125 of this article: “The new system has been designed to evaluate the positive functional capacities of the individual rather than his (sic) overt defects.” and “Ordinary clinical records so often only note defects and give little information about their functionally limiting effects, and even less information about other possible compensating assets of the individual concerned.”
Forty years later, the WHO’s ICF concepts (2001) (and adaptations of the ICF like the ‘F-words in Childhood Disability’ ) have ‘caught up’ to Lindon’s emphasis on function and ‘can do’!’
1964: The Evolution of Infantile Postural Reflexes in the Presence of Chronic Brain Syndromes by Richmond S Paine.
Selected by Richard Robinson: ‘Richmond Paine pioneered a lot of the careful studies of early motor development doing really original work. A lot of the reflexes and their significance would have been new to most of his readers. He died tragically young.’
Selected by Richard Robinson: ‘In this typically trenchant paper, Mike Rutter is talking about autism and he demolishes in particular two speculations prevalent at that time, namely a relationship to adult schizophrenia and environmental/emotional factors playing a role, “the cold mother”, which left intolerable burdens of guilt on many mothers of the period.
I was sorry not to be able to include Meg Ounsted’s study on fetal growth which was also pretty ground breaking. (Ounsted M. Maternal constraint of foetal growth in man. Dev Med Child Neurol 1965; 7: 479–91.)
1966: Organ Weight in Malnutrition with Special Reference to Brain Weight by Roy E Brown.
Selected by Richard Robinson: ‘An analysis of 1094 autopsies (!) carried out over an eleven year period which helped to establish a critical period of the effect of malnutrition on brain growth early in life.’
1967: The tyranny of the idea of cure by Ronald Mac Keith.
Selected by Richard Robinson: ‘I could have referenced many of Ronnie’s editorials which still shine as brightly now as they did then. This one however had a life long effect on my mind set and came as a huge relief to a burden I was only dimly aware I was carrying.’
Selected by Richard Robinson: ‘This I found genuinely difficult. Ronnie clearly had the habit of soliciting articles from people who he felt had done important work and the two articles highlighted are examples of this. Worster‐Drought was medical director of Moor House school for children with language difficulties and this article summarises his many years experience. In it he describes the two syndromes which subsequently and confusingly for many people both bear his name, and will have been new information for most of his readers.
In Poverty and Child Development, Simon and Gillian Yudkin outline the inequities largely relating to class. Not a lot has changed.’
1969: Acute Hemiplegia in Infancy and Childhood by J Aicardi, J Amsili, and J J Chevrie.
Selected by Lewis Rosenbloom: ‘As ever with Jean Aicardi’s work this was a meticulously observed clinical study. It repaid re-reading it, even after such a long interval.’
Selected by Lewis Rosenbloom: ‘I have selected two brief papers. The first of these is an annotation entitled Fetal Growth and Mental Ability by Margaret Ounsted. I learned a great deal from Meg and Kit Ounsted and enjoyed spending time with them in Oxford. Her critical analyses of what was relevant in determining fetal growth and ultimate functioning in childhood remains important observational work.
The second paper from Volume 12 is from Prechtl. This is an annotation entitled Hazards of Oversimplification. This produced in me just a touch of schadenfreude.’
1971: Visual Acuity of a National Sample (1958 cohort) at 7 years by Eva D Alberman, Neville R Butler, and Mary D Sheridan and Results of Treatment of Myelomeningocele by J Lorber.
Selected by Lewis Rosenbloom: ‘The first is Visual Acuity of a National Sample (1958 cohort) at 7 years. I learned so much from Mary Sheridan including learning practical skills from her. I still think that this was a model piece of clinico-epidemiological work.
The other paper from this volume was Results of Treatment of Myelomeningocele by Lawber. We forget that there was a spinal bifida epidemic at this time. John’s views were controversial. They stimulated vigorous debate to which I contributed.
1972: The Place of Surgery in the Treatment of Epilepsy in Childhood and Adolescence: A Preliminary Report in 13 Cases by Serena Davidson, Murray A Falconer, and C Eric Stroud and Surgery in Lower Limbs in Cerebral Palsy by Perin Mullaferoze and Pravin H Vora.
Selected by Lewis Rosenbloom: ‘The first is The Place of Surgery in the Treatment of Epilepsy in Childhood. This was a relatively small case series but was one of a number of papers that were instrumental in initiating changes of practice.
The other is Surgery in Lower Limbs in Cerebral Palsy. This is a paper from India from Mullaferoze and Vora. For me it was and is a good illustration of a description of practice without there being a particularly good evidence base. It did however, set many people thinking on what should be the evidence base for orthopaedic surgery in cerebral palsy.
1973: The Prevalence of Speech Disorders in Childhood by T T S Ingram.
Selected by Lewis Rosenbloom: ‘Tom was the senior paediatric neurologist in Edinburgh. His interest in neurodisability was wide and he was very influential. For me he deserves a place in this gallery.’
1974: Maternal Behavior One Year After Early and Extended Post‐partum Contact by John H Kennell, Richard Jerauld, Harriet Wolfe, David Chester, Nancy C Kreger, Willie McAlpine, Meredith Steffa, and Marshall H Klaus.
Selected by Nigel Paneth: ‘This paper is notable in showing that a simple and inexpensive intervention – allowing newborns to spend five more hours per day with their mothers in the hospital than was usual at the time – had strikingly positive effects on maternal behaviors in relation to their infants, extending as long as a year after birth. This experiment, in which assignment of the intervention was determined by day of the week, was one of the earliest of many papers by the Cleveland, Ohio neonatologists Marshall Klaus and John Kennell and their colleagues that created the field of “infant bonding”. The central hypothesis of the field was that a “critical” (later modified to “sensitive”) period existed in very early life during which a permanent connection could be forged between mother and child, to their mutual benefit. To this body of work we owe in part current hospital rooming-in policies for newborns, and, to another scientific endeavor of this team, the increasingly widespread use of doulas to assist mothers in labor.’
1975: A Home‐visiting Intervention Programme with Jamaican Mothers and Children by M Sally, Grantham McGregor, and P Desai.
Selected by Nigel Paneth: ‘We now take for granted that early cognitive and behavioral interventions can help children’s capacity to learn in school. That understanding is built into the Head Start program in the US, which began in 1965, before a solid scientific basis had been established for its effectiveness. Papers such as this, from one of the true pioneers of this field, constituted among the earliest experimental evidence that even quite modest interventions, in this case home visits of one hour’s duration, weekly for 8 months, in which the mother was encouraged and shown how to play with, talk to, read to, and teach their children, could be reflected in later child IQ scores and maternal child-rearing behaviors.’
1976: Environmental Effects on Motor Development: the Case of ‘African Infant Precocity’ by Charles M Super.
Selected by Nigel Paneth: ‘There is considerable evidence for the proposition that African children achieve motor milestones earlier than do children of other backgrounds. Not surprisingly in the genomic era, this observation has been widely interpreted as yet another human phenomenon ingrained in our DNA; a trait akin to hair color. But Super’s careful observations in Kenya showed that it was only certain motor functions that were advanced, specifically sitting and walking, while other motor functions, such as crawling and turning over, were not. But even more importantly, he showed that 80% of the children he observed (who were of the Kipsigis people) were deliberately trained by their mothers to sit up and to walk. He further reported that unlike in most European and North American families, many African peoples have a tradition of training their infants to sit and to walk. The genome need not be the default every time.’
1977: Longitudinal Study of Bowel and Bladder Control by Day and at Night in the First Six Years of Life by Remo H Largo and Werner Stutzle.
Selected by Nigel Paneth: ‘The first Zurich Longitudinal Study has been an early and important source of information about growth and development, and this two-part paper was among its earliest contributions. Very few investigations have used a large, representative sample to examine the ages at which bladder and bowel control have been achieved. The paper also documents the remarkable cultural evolution of maternal behavior in relation to control of excretory functions. In 1955, potty training had been initiated by age one year in 96% of children, but by 1975, in the second Zurich Longitudinal Study, that figure was just 5%.’
1978: Infants of Very Low Birth Weight by Fiona J Stanley and Eva D Alberman.
Selected by Nigel Paneth: ‘Newborn intensive care, largely for premature infants, began in select centers in the late 1960’s and had come of age by the late 1970’s. As with so many trends in medical care, the evidence that this new technology was truly life-saving took a while to assemble, and the recognition that with more lives saved in a group of infants at high risk for disability, the net prevalence of disability in the population must rise, took even longer. This paper was one of the first to document how neonatal mortality for small infants in London, UK, was medical care dependent. Death rates were higher at night, on weekends, and on units with fewer staff. Colder babies (<32.9°C) died at much higher rates than babies with normal temperatures (35–36°C), confirming what our great-grandmothers knew when they put premature babies in a shoe box on a warm stove.’
Selected by Margaret Mayston: ‘This was the first in a long series on epidemiology from Western Australia, this first article covering the years 1956-1975, recording an incidence of CP in 1964 to be 3.9/1000 live births in WA! A similar series by Hagberg’s group in Sweden had been published from 1975, following cases from 1954, and this series continues today, most recently published in 2006 by Himmelmann & Uvebrant showing that in Sweden, that the incidence of CP had stabilized at ~2.2/ 1000 live births.
It is also worth mentioning an editorial by Martin Bax, entitled ‘Observe the Patient!‘ He pointed out that in the light of increasing technology, it is important not to neglect our most basic skill of observation and interpretation- how true this still is today in 2018, 40 years later.’
1980: Effects of Vestibular Stimulation on Motor Development of Cerebral‐palsied Children by Kenneth J Sellick and Ray Over.
Selected by Margaret Mayston: ‘The article emphasized that although physical therapy is the dominant intervention for children with disability, there are few studies to evaluate its effectiveness. They point out various factors that are needed in such studies- theirs was on vestibular stimulation. “Controls are needed; the sample must be large enough, assessment techniques must be reliable and objective; measures should be made before, during and on follow-up and that evaluation must record multiple baseline measures; blind assessors must be used.” They also pointed out that gains may not be necessarily attributed to the intervention studied, and that factors such as age, diagnosis and therapeutic history might be important to consider. If all studies and systematic reviews followed these guidelines we might be making faster progress to determine which are the useful interventions and for whom, and the journal article reviewers job might be easier!’
1981 (The International Year of the Disabled Person): Self‐Concept of Young Children with Cerebral Palsy by Stuart W Teplin, Judy A Howard, and Mary J O’Connor.
Selected by Margaret Mayston: ‘This year had many articles of interest due to the significance of the year, but I was pleased to read the article by Teplin et al. about self concept and self esteem for children with a disability. This study, though small in sample size (n=15), described the need for the medical practitioner to look beyond medical follow-up in caring for the “handicapped child” to also consider child and family advocacy, counselling, consultation with schools, and appropriate school placements. It was a novel idea at that time, but in 2018 with the focus on family centred therapy and team work, we seem to have made good progress in taking account of these proposals. Despite this being published in 1981, PubMed statistics show that it is only since 2005 that more articles have been published on self-concept and self esteem in people with cerebral palsy.’
1982: ‘The results of treatment’: The horns of our dilemma by Paul H Pearson.
Selected by Margaret Mayston: ‘This was a difficult year to review and the Editorials were the highlights for me, particularly the one by Pearson, which reiterated the sentiment of a review by Mac Keith and Bax 15 years before then (1967), and also Taft 10 years earlier (1972), both of which denounced the lack of evidence for treatment of children with CP. This editorial shows that research into what treatments work has made little progress in the last 40 years as we are still making the same comments. “Skepticism and curiosity are the essential antecedents of scientific progress. Only if we question our methods and seek the hard evidence to answer those questions will we truly know the results of treatment.” The quest continues!’
1983: Regional Cerebral Glucose Metabolism of Newborn Infants Measured by Positron Emission Tomography by Lex W Doyle, Claude Nahmias, Gunter Firnau, David B Kenyon, E Stephen Garnett, and John C Sinclair.
Selected by Margaret Mayston: ‘This volume had many articles of interest, including the biomechanical measurement of spasticity (Otis et al.), sleep in preterm versus term born infants (Booth et al.), and powered mobility in the very young (Butler et al.), still a contentious topic!
I chose the article by Doyle et al. as this was the first study to use positron emission tomography (PET) imaging to study cerebral glucose metabolism. They found that decreased glucose metabolism in regions of the brain as shown by computerized axial tomography were structurally abnormal and concluded that PET was a promising new diagnostic tool for the study of newborn infants with suspected abnormalities of brain function. Imaging now is a fundamental diagnostic tool and the methods are becoming more robust and infant-friendly. Indeed a recent study (Anderson et al. 2018 – not in DMCN) has described the advent of a PET/MRI procedure that can be successfully applied to unsedated new born infants.’
1984: Longitudinal study of physical working capacity of young people with spastic cerebral palsy by Åke Lundberg.
Selected by Andy Gordon: ‘One of the first studies to consider changes in function during development, and it dispelled the notion that all function declines in adolescence.’
1985: Permanent cortical visual impairment in children by Sharon Whiting, James E Jan, Peter K H Wong, Olof Flodmark, Kevin Farrell, and Andrew Q McCormick.
Selected by Andy Gordon: ‘An early study highlighting the prevalence and importance of cortical visual impairments in CP.’
1986: Effects of powered mobility on self‐initiated behaviors of very young children with locomotor disability by Charlene Butler.
Selected by Andy Gordon: ‘A precursor to the go-baby-go and other assistive technology demonstrating the relation between enhanced early motor experience and cognitive development.’
1987: A neurological study of hand function of hemiplegic children by J K Brown, F van Rensburg, G Walsh, M Lakie, and G W Wright.
Selected by Andy Gordon: ‘An early systematic study quantifying the manual impairments in children with unilateral CP, and a catalyst for more systematic studies eventually leading to the concept that the hand function could change with experience.’
1988: Perinatal correlates of major and minor neurological dysfunction at school age: a multivariate analysis by M Hadders‐Algra, H J Huisjes, and B C L Touwen.
Selected by Andy Gordon: ‘Large sample prospective study identifying long-term outcomes of mild neurological damage.’
1989: Prognosis after grand mal seizures: a study of 187 children with three‐year remissions by P Ehrhardt and W I Forsythe.
Selected by Charles Newton: ‘Excellent study showing the prognosis of epilepsy after stopping anti-epileptic medication.’
1990: Congenital malformations and maternal consumption of benzodiazepines: a case-control study by Liv Laegreid, Ragnar Olegård, Nils Conradi, Gudrun Hagberg, Jan Wahlström, and Lars Abrahamsson and Late effects of central nervous system treatment of acute lymphoblastic leukemia in childhood are sex-dependent by Deborah P Waber, David K Urion, Nancy J Tarbell, Charlotte Niemeyer, Richard Gelber, and Stephen E Sallan.
Selected by Charles Newton: ‘The first paper highlighted the dangers of pregnant women taking benzodiazepines, which was common in the 1980 and 1990s. The second paper Demonstrated the dangers of brain irradiation during the treatment of leukemia.’
1991: Myelination as an expression of the functional maturity of the brain by M S van der Knaap, J Valk, C J Bakker, M Schooneveld, J A J Faber, J Willemse, and R H J M Gooskens.
Selected by Charles Newton: ‘Highlighted the usefulness of MRI to assess myelination in children’s brains.’
1992: Flash and pattern-reversal visual evoked potential abnormalities in infants and children with cerebral blindness by Yitzchak Frank, Diane Kurtzberg, Judith A Kreuzer, and Herbert G Vaughan Jr.
Selected by Charles Newton: ‘Established the usefulness of visual evoked potentials in assessing cortical blindness.’
1. The National Childhood Encephalopathy study: a 10-year follow-up. A report on the medical, social, behavioural and educational outcomes after serious, acute, neurological illness in early childhood by N Madge, J Diamond, D Miller, E Ross, C McManus, J Wadsworth, W Yule, and B Frost.
2. Infectious diseases in pregnancy, cytokines and neurological impairment: an hypothesis by Matteo Adinolfi.
3. An effective community-based approach to the identification of neurodevelopmental delay in childhood by E Tirosh, M Lechtman, H Diamand, and M Jaffe.
Selected by Charles Newton:
‘1. A comprehensive report of the outcome of childhood encephalopathy, which has provided useful information on the prognosis.
2. Highlighted an area of research which is now an area of active research.
3. Supported the usefulness of monitoring child development in the community.’
1994: Botulinum toxin in the management of the lower limb in cerebral palsy by A P Cosgrove, I S Corry, and H K Graham.
Selected by Martin Smith: ‘Botulinum toxin injections were a very new concept in the management of cerebral palsy in 1994. This was one of the first papers demonstrating the efficacy and safety of what was to become a mainstay of spasticity management in the following decades.’
1995: Muscle response to heavy resistance exercise in children with spastic cerebral palsy by Diane L Damiano, Christopher L Vaughan, and Mark E Abel.
Selected by Martin Smith: ‘Historically strength training had been controversial in children with cerebral palsy. Despite weakness contributing significantly to functional impairment, many therapists were reluctant to undertake strength training in children with cerebral palsy for fear of exacerbating spasticity. This study demonstrated that strength training was safe and effective, although remains to this day sadly under-utilised.
1996: A twin study of congenital hemiplegia by Robert Goodman and Eva Alberman.
Selected by Martin Smith: ‘Congenital hemiplegia was to become part of my future PhD thesis, and the work of Robert Goodman and colleagues was (and remains) a great source of wisdom. This study reported no less than 361 subjects known to the London Hemiplegia Register, and compared the characteristic of singleton to twin pregnancies.’
1997: Development and reliability of a system to classify gross motor function in children with cerebral palsy by Robert Palisano, Peter Rosenbaum, Stephen Walter, Dianne Russell, Ellen Wood, and Barbara Galuppi.
Selected by Martin Smith: ‘The description of the development of the Gross Motor Function Classification System (GMFCS), which was to become a world-wide tool to define functional levels in cerebral palsy. ‘
1998: The patient, the Internet, and the clinician by Stuart Green.
Selected by Martin Smith: ‘My eye was caught by a couple of editorials by Martin Bax (‘Getting on the internet’ 1995, 37: 565-566) and Stuart Green, musing on how the internet may affect medical journalism and clinical practice in the future. At the time the internet was a brave new world of uncertain potential and some threat. Some things never change!’
1999: Epilepsies of neonatal onset: seizure type and evolution by Kazuyoshi Watanabe, Kiyokuni Miura, Jun Natsume, Fumio Hayakawa, Sunao Furune, and Akihisa Okumura.
Selected by Peter Baxter: ‘This large follow up study shows the value of systematically classifying and following neonatal onset epilepsies, and in doing so highlighted a previously unrecognised form of age related evolution.’
2000: Surveillance of cerebral palsy in Europe: a collaboration of cerebral palsy surveys and registers by Christine Cans.
Selected by Peter Baxter: ‘A landmark paper describing how the SCPE was set up and standardised for definition and classification.’
2001: Randomized controlled trial of physiotherapy in 56 children with cerebral palsy followed for 18 months by E Bower, D Michell, M Burnett, M J Campbell, and D L McLellan.
Selected by Peter Baxter: ‘In a notoriously difficult area this outstanding example of good methodology and important findings also has learning points for future studies that are very pertinent 17 years later.’
2002: Bilateral lesions of thalamus and basal ganglia: origin and outcome by Ingeborg Krägeloh‐Mann, Alexandra Helber, Irina Mader, Martin Staudt, Markus Wolff, Floris Groenendaal, and Linda DeVries.
Selected by Peter Baxter: ‘One fruit from a long term international collaboration, a careful correlation of clinical and imaging findings which has become a classic paper.’
2003: A population survey of mental health problems in children with epilepsy by Sharon Davies, Isobel Heyman, and Robert Goodman.
Selected by Peter Baxter: ‘Depressingly, psychiatric associates with epilepsy in children had not changed over 30 years, but the management implications have still not been adequately addressed.’
2004: Participation of children with cerebral palsy is influenced by where they live by Donna Hammal, Stephen N Jarvis, and Allan F Colver.
Selected by Dido Green: ‘This issue showed the emergence of more papers considering issues across the International Classification of Function in advance of the Child and Youth version (published 2007). Importantly therefore are papers articulating the influence of the environment on outcomes of development/disability. The ecological validity of assessments and interventions was seen and importantly also a focus on the impact and progression of developmental disorders into adulthood. In the end I opted for: Participation of children with cerebral palsy is influenced by where they live. This article for me, represents a critical change in research direction and reporting to focus on participation with the importance of participation in life situations that are meaningful in the day to day lives of children (with or without cerebral palsy).’
2005: Effects of constraint‐induced movement therapy in young children with hemiplegic cerebral palsy: an adapted model by Ann‐Christin Eliasson, Lena Krumlinde Sundholm, Karin Shaw, and Chen Wang and Proposed definition and classification of cerebral palsy, April 2005 by Martin Bax, Murray Goldstein, Peter Rosenbaum, Alan Leviton, Nigel Paneth, Bernard Dan, Bo Jacobsson, Diane Damiano; Executive Committee for the Definition of Cerebral Palsy.
Selected by Dido Green: ‘This issue provided a number of articles reflecting co-morbidity/co-occurring conditions in neurodevelopmental disorders. Throughout the issue there was a focus on the impact of these on behaviour (such as sleep which has multiple impacts on the family and child) and conditions that present challenges for clinicians with respect to management. In the end I opted for the Eliasson et al. paper, which has provided a benchmark for both research and clinical practice in the management of upper limb interventions for children with unilateral hemiparesis/cerebral palsy.
However, the publication of the proposed definition and classification of cerebral palsy challenges my overall decision. This publication has contributed to significant dialogue, debate and hopefully some universal understanding of what is meant by the term Cerebral Palsy and the complexity of the condition and variability within. I therefore feel I have to have two choices for 2005.’
2006: A randomized trial of long‐chain polyunsaturated fatty acid supplementation in infants with phenylketonuria by Carlo Agostoni, Ann Harvie, Daphne L McCulloch, Colin Demellweek, Forrester Cockburn, Marcello Giovannini, Gordon Murray, R Angus Harkness, and Enrica Riva.
Selected by Dido Green: ‘This issue presented a number of papers reporting on rarer or less reported conditions or ‘less reported’ studies and or broader spectrum of impact on function of these conditions. These included: Leukodystrophies Phenyleketonuria, Juvenile neuronal ceroid lipofuscinosis, Sotos syndrome, Dancing Eye Syndrome (Opsiclonus Myoclonus Syndrome), and potential pathogens. These papers highlighted the importance of understanding these conditions in order to counsel families and consider impact of potentially invasive interventions. In the end I voted for this study with direct clinical relevance.’
Selected by Dido Green: ‘This issue creates a challenge for clinical ‘decisions’ based on evidence-based practices. A number of debates of interest were evidenced through editorials and letters to the editor. The issue does introduce major studies reporting on follow-up of infants born preterm and as earlier issues the complexity of comorbidity of childhood neurodisability. Ultimately though I have opted for this paper. The main reason being the importance of this paper in highlighting an intervention which may, in Western Cultures be expensive and exclusive, but in low resource cultures provide an accessible intervention that can be integrated easily within daily life. This is especially so when animals such as mules, donkeys, horses, and elephants are more common modes of transport. This paper may/may not have contributed to further research published in DMCN in Volume 53.’
2008: Shaken baby syndrome: the quest for evidence by Waney Squier and Participation and enjoyment of leisure activities in school‐aged children with cerebral palsy by Annette Majnemer, Michael Shevell, Mary Law, Rena Birnbaum, Gevorg Chilingaryan, Peter Rosenbaum, and Chantal Poulin.
Selected by Dido Green: ‘This issue has challenged me the most with respect to the five years covered up to this point. In my opinion we start to see the impact of the publications of the previous years’ publications, particularly with respect to articles on participation and specialist interventions such as intrathecal baclofen and or effects of methylphenidate. I am not sure if I am taking a more controversial decision here. I have chosen these rather than refer to important guidelines (e.g. Guidelines of the Surveillance of Cerebral Palsy in Europe for the classification of cerebral palsy), I have thus opted for these two papers.
The first by Waney Squier highlights the importance for impartial clinical decision making that continues to challenge us, particularly with respect to ‘Dr Google’, ensuring our key stakeholders (children and families) are informed, and considers the impact of alternative sources of information that may both inform as well as bias our interpretation of data.
A runner up is the paper by Majnemer et al. This paper helps us keep in mind the broader impact of disability and methods we may use to intervene to have a positive impact on participation, if not body function and capacity.’
2009: Adult outcomes and lifespan issues for people with childhood‐onset physical disability by Marij E Roebroeck, Reidun Jahnsen, Carlos Carona, Ruth M Kent, and M Anne Chamberlain.
Selected by Jan Willem Gorter: ‘This paper provides a resume of the problems and challenges faced by young people and adults with a childhood onset disability. I have chosen this article as it was a pivotal article almost 10 years ago with a call for action to address an international challenge to incorporate a lifespan perspective in paediatric, transition, and adult health care services for persons with a childhood-onset disability. Since the publication of this article, we have seen a gradual increase in original articles published in DMCN with new knowledge filling the gaps.’
2010: Consensus research priorities for cerebral palsy: a Delphi survey of consumers, researchers, and clinicians by Sarah McIntyre, Iona Novak, and Anne Cusick.
Selected by Jan Willem Gorter: ‘This article was one of the first publications on setting priorities in research in the field of childhood disability (including cerebral palsy) through stakeholder consultation with a panel of consumers, researchers and clinicians. We have seen a shift towards patient and family engagement/involvement in research. The article shows clearly that consumers bring forward priorities for research (for example pain) which would not have been identified by professionals.’
2011: Focus on function: a cluster, randomized controlled trial comparing child‐ versus context‐focused intervention for young children with cerebral palsy by Mary C Law, Johanna Darrah, Nancy Pollock, Brenda Wilson, Dianne J Russell, Stephen D Walter, Peter Rosenbaum, and Barb Galuppi.
Selected by Jan Willem Gorter: ‘This article reports the findings of a first randomized trial for young children with cerebral palsy to examine the effects of therapy focused on changing only the task or environment, and not the child. The study showed that children who received the context-focused therapy made similar improvements to those receiving child-focused therapy. I chose the article as it was pivotal in shifting the focus of therapy from a traditional approach in pediatric rehabilitation to a modern, family-centred and functional approach.’
2012: Informing evidence‐based clinical practice guidelines for children with cerebral palsy at risk of osteoporosis: a systematic review by Darcy Fehlings, Lauren Switzer, Payal Agarwal, Charles Wong, Etienne Sochett, Richard Stevenson, Lyn Sonnenberg, Sharon Smile, Elizabeth Young, Joelene Huber, Golda Milo-Manson, Ghassan Abu Kuwaik, and Deborah Gaebler and Global perspective on early diagnosis and intervention for children with developmental delays and disabilities by Alfred L Scherzer, Meera Chhagan, Shuaib Kauchali, and Ezra Susser.
Selected by Jan Willem Gorter: ‘Fehlings et al. introduced the development of a practical care pathway for bone health in children with cerebral palsy informed by the best research evidence available. This was the first care pathway, since then many more care pathways have been developed. The paper by Scherzer et al. is a call for a global strategy needed to narrow the gap between early identification and the increasing population of children with delays and disabilities in developing countries. Still, there is minimal attention to this important global health issue.’
2013: A systematic review of interventions for children with cerebral palsy: state of the evidence by Iona Novak, Sarah Mcintyre, Catherine Morgan, Lanie Campbell, Leigha Dark, Natalie Morton, Elise Stumbles, Salli‐Ann Wilson, and Shona Goldsmith.
Selected by Jan Willem Gorter: ‘This article was both controversial and impactful given the number of letters to the editor following its publication. It introduced a simple “traffic light” system to help translate knowledge on the effects of therapies to practice.’
2014: Benign hereditary chorea related to NKX2.1: expansion of the genotypic and phenotypic spectrum by Kathryn J Peall, Daniel Lumsden, Rachel Kneen, Rajesh Madhu, Deirdre Peake, Frances Gibbon, Hilary Lewis, Tammy Hedderly, Esther Meyer, Stephanie A Robb, Bryan Lynch, Mary D King, Jean‐Pierre Lin, Huw R Morris, Heinz Jungbluth, and Manju A Kurian.
Selected by Anna Basu.
2015: Survival with cerebral palsy over five decades in western Sweden by Kate Himmelmann and Valter Sundh.
Selected by Anna Basu.
2016: Longitudinal development of hand function in children with unilateral spastic cerebral palsy aged 18 months to 12 years by Linda Nordstrand, Ann‐Christin Eliasson, and Marie Holmefur.
Selected by Anna Basu.
2017: Bayley‐III motor scale and neurological examination at 2 years do not predict motor skills at 4.5 years by Nataliia Burakevych, Christopher Joel Dorman Mckinlay, Jane Marie Alsweiler, Trecia Ann Wouldes, and Jane Elizabeth Harding For the Chyld Study Team.
Selected by Anna Basu.
2018: Stiripentol efficacy and safety in Dravet syndrome: a 12‐year observational study by Kenneth A Myers, Paul Lightfoot, Shekhar G Patil, J Helen Cross, and Ingrid E Scheffer.
Selected by Anna Basu.