Colin R Kennedy

Colin R Kennedy
University of Southampton

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207
Publications
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Publications

Publications (207)
Article
Determinants of survivorship outcomes are emerging from limited studies of medulloblastoma (MB) survivors. We undertook an integrated analysis of biological (tumour group, host genetics) and clinico-demographic features in patients treated on the SIOP-UKCCSG-PNET3 and HIT-SIOP-PNET4 clinical trials with available quality of survival (QoS) data (n=2...
Conference Paper
Determinants of survivorship outcomes are emerging from limited studies of medulloblastoma (MB) survivors. We undertook an integrated analysis of biological (tumour group, host genetics) and clinico-demographic features in patients treated on the SIOP-UKCCSG-PNET3 and HIT-SIOP-PNET4 clinical trials with available quality of survival (QoS) data (n=2...
Article
BACKGROUND Survivors of childhood brain tumours are at risk of poor health-related quality of life (HRQoL). Appropriate and relevant measures can be used to monitor HRQoL so that timely interventions may be made for issues thus identified. We had previously selected patient-reported outcome measures (PROMs) with good psychometric properties that ha...
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Little is known about the impact of bilateral permanent childhood hearing loss (PCHL) on health-related quality of life (HRQoL). The objective of this study was to describe preference-based and non-preference based HRQoL outcomes in adolescence, from both self and proxy perspectives, amongst participants of the Hearing Outcomes Project. The Health...
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Relationships between biological factors (genetic, tumour molecular subgroup) and neurocognitive/Quality of Survival (QoS) outcomes in medulloblastoma survivors are emerging, based on studies of limited retrospective cohorts. Integrated investigations of the medulloblastoma late-effects pathway (considering biological, clinical and treatment factor...
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BACKGROUND The HRQoL of survivors of childhood brain tumour is significantly reduced into adulthood but is not systematically assessed. In the UK, referral for appropriate support is often reactive rather than proactive. We developed KLIK, the online Dutch platform, for use to enable the systematic assessment of HRQoL in the UK NHS using patient-re...
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Full-text available
BACKGROUND Childhood brain tumours and their treatment can reduce health-related quality of life (HRQoL) and cause anxiety and depression, withdrawal, and social isolation. Improved communication within outpatient consultations may allow early identification and treatment of these issues. We explored family communication needs in survivors of child...
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Background The WHO reports excessive rates of ill-defined neurological diagnoses and ineffective and potentially harmful drug treatments in children in the Commonwealth of Independent States (CIS). Collectively termed perinatal encephalopathy and the syndrome of intracranial hypertension (PE-SIH), these diagnoses are important contributors to perce...
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We examined phonological recoding during silent sentence reading in teenagers with a history of dyslexia and their typically developing peers. Two experiments are reported in which participants’ eye movements were recorded as they read sentences containing correctly spelled words (e.g., church), pseudohomophones (e.g., cherch), and spelling control...
Article
Objective: Extensive resection of a tumor in the posterior fossa in children is associated with the risk of neurological deficits. The objective of this study was to prospectively evaluate the short-term neurological morbidity in children after medulloblastoma surgery and relate this to the tumor's growth pattern and to the extent of resection. M...
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Background Survivors of childhood brain tumors or other acquired brain injury (ABI) are at risk of poor health-related quality of life (HRQoL); its valid and reliable assessment is essential to evaluate the effect of their illness on their lives. The aim of this review was to critically appraise psychometric properties of patient-reported outcome m...
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Objective The provision of rehabilitation services after childhood brain tumour has not been established, despite a recent parliamentary call for urgent action. This service evaluation aimed to determine what specialist paediatric neuro-oncology rehabilitation services were available across the UK at the time of the surveys and whether the needs of...
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Deaf and Hard of Hearing adolescents (DHH) experience more peer problems and lower levels of friendships than their hearing peers. This study used a qualitative approach to identify their experiences of peer problems and factors influencing them. A sample of 30, 13-19, year-old DHH adolescents with a moderate to profound hearing loss, drawn from a...
Article
Objective: extensive resection of a tumor in the posterior fossa in children is associated with risk of neurological deficits. The objective of this study was to prospectively evaluate the short-term neurological morbidity in children after medulloblastoma (MB) surgery and relate this to the tumor´s growth pattern and to the extent of resection. M...
Article
Early onset cerebellar Ataxia (EOAc) comprises a large group of rare heterogeneous disorders. Determination of the underlying etiology can be difficult given the broad differential diagnosis and the complexity of the genotype-phenotype relationships. This may change the diagnostic work-up into a time-consuming, costly and not always rewarding task....
Article
Objective: To determine the underlying etiologies in a contemporary cohort of infants with infantile spasms and to examine response to treatment. Methods: Identification of the underlying etiology and response to treatment in 377 infants enrolled in a clinical trial of the treatment of infantile spasms between 2007 and 2014 using a systematic re...
Article
An assessment of the prevalence of perinatal encephalopathy, the synfrome of intracranial hypertension and associated diagnostic labels in the Commonwealth of Independent States
Article
Objective The provision of rehabilitation services after childhood brain tumour has not been established, despite a recent parliamentary call for urgent action. This service evaluation aimed to determine what specialist paediatric neuro-oncology rehabilitation services were available across the UK at the time of the surveys and whether the needs of...
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Full-text available
Background: Infantile spasms constitute a severe form of epileptic encephalopathy. In the International Collaborative Infantile Spasms Study (ICISS), we showed that combining vigabatrin with hormonal therapy was more effective than hormonal therapy alone at stopping spasms between days 14 and 42 of treatment. In this planned follow-up, we aimed to...
Conference Paper
Full-text available
BACKGROUND The quality of life (QoL) of children and adolescents treated for brain tumours is significantly impaired into adulthood but is not systematically screened by methods appropriate to these patients. In the UK, referral of them for appropriate support is often reactive rather than proactive. We are developing and testing KLIK, an online pl...
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Full-text available
Background: Deaf and hard of hearing (D/HH) children and young people are known to show group-level deficits in spoken language and reading abilities relative to their hearing peers. However, there is little evidence on the longitudinal predictive relationships between language and reading in this population. Aims: To determine the extent to whi...
Article
There has been considerable variability within the literature concerning the extent to which deaf/hard of hearing individuals are able to process phonological codes during reading. Two experiments are reported in which participants’ eye movements were recorded as they read sentences containing correctly spelled words (e.g., church), pseudohomophone...
Article
Full-text available
Objective To investigate the effects in adolescence of bilateral permanent childhood hearing loss (PCHL) > 40 dB and of exposure to universal newborn hearing screening (UNHS) on societal costs accrued over the preceding 12 months. Design, setting, participants An observational cohort study of a sample of 110 adolescents aged 13–20 years, 73 with P...
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Full-text available
Background: Permanent childhood hearing loss (PCHL) is associated with an elevated level of emotional and behaviour difficulties (EBD). In children and adolescents with PCHL, EBD has been found to be linked to language ability in children with PCHL. The present study was designed to test whether childhood language and/or reading comprehension abili...
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Full-text available
Objectives: it is known that during the middle childhood years those with permanent childhood hearing loss (PCHL) are at increased risk of showing emotional and behaviour difficulties (EBD). It has yet to be established whether this risk continues into the late teenage years. There is a paucity of longitudinal studies on the association between PCH...
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Objectives: This study aimed to examine whether (a) exposure to universal newborn hearing screening (UNHS) and b) early confirmation of hearing loss were associated with benefits to expressive and receptive language outcomes in the teenage years for a cohort of spoken language users. It also aimed to determine whether either of these two variables...
Article
Aim: To investigate the epidemiology, clinical profile and risk factors of pseudotumor cerebri syndrome (PTCS) in children aged 1-16?years. Methods: A national prospective population-based cohort study over 25?months. Newly diagnosed PTCS cases notified via British Paediatric Surveillance Unit were ascertained using classical diagnostic criteria...
Article
p>Background: Sleep disordered breathing (SDB) is often co-morbid with conductive hearing loss in early childhood, due to a shared aetiology of adenotonsillar hypertrophy. Hearing loss is independently associated with impairment of executive function and behavioural difficulties. We hypothesised that these impairments in children with SDB may be me...
Article
Background The relationship between direct assessments of cognitive performance and questionnaires assessing quality of survival (QoS) is reported to be weak-to-nonexistent. Conversely, the associations between questionnaires evaluating distinct domains of QoS tend to be strong. This pattern remains understudied. Methods In the HIT-SIOP PNET4 rand...
Article
Background: Infantile spasms constitutes a severe infantile epilepsy syndrome that is difficult to treat and has a high morbidity. Hormonal therapies or vigabatrin are the most commonly used treatments. We aimed to assess whether combining the treatments would be more effective than hormonal therapy alone. Methods: In this multicentre, open-labe...
Article
Background: The relationship between direct assessments of cognitive performance and questionnaires assessing quality of survival (QoS) is reported to be weak-to-nonexistent. Conversely, the associations between questionnaires evaluating distinct domains of QoS tend to be strong. This pattern remains understudied. Methods: In the HIT-SIOP PNET4 ra...
Conference Paper
Background: The relationship between direct assessments of cognitive performance and questionnaires assessing quality of survival (QoS) is reported to be weak-to-nonexistent. Conversely, the associations between questionnaires evaluating distinct domains of QoS tend to be strong. This pattern remains understudied. Methods: In the HIT-SIOP PNET4 ra...
Conference Paper
BACKGROUND: The relationship between direct assessments of cognitive performance and questionnaires assessing QoS is consistently reported to be weak-to-nonexistent. Conversely, the associations between questionnaires evaluating distinct domains of QoS tend to be strong. This equivocal pattern remains understudied. METHODS: In the HIT-SIOP PNET4 ra...
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Full-text available
Purpose: This study was designed to investigate the benefit to upper limb function of a home-based version of pediatric constraint-induced movement therapy, which was delivered across 2 months. Methods: Nine children (mean age: 6 years, 9 months) with hemiplegic cerebral palsy participated in this A1-B-C-A2 design, where A1 and A2 were noninterven...
Article
OBJECTIVES: Previously we found that SHH subgroup medulloblastomas were associated with better HRQoL among survivors from the SIOP-UKCCSG-PNET3 clinical trial. In the present study, we aimed to repeat this analysis in survivors from HIT-SIOP-PNET4 to further explore the relationship between HRQoL and the underlying biology of medulloblastoma. METHO...
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Background A national survey in 2006 identified that UK referral practice for pediatric CNS tumors ranked poorly in international comparisons, which led to new National Health Service (NHS) Evidence accredited referral guidelines published in 2008 by the Royal College of Paediatrics and Child Health and a campaign to raise awareness of early featur...
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We aimed to identify a brief screening measure for detection of cognitive deficit in children treated for cerebellar tumors that would be useful in clinical practice. A sample of 72 children, aged 8-14 years, and within 3 years post diagnosis for standard-risk medulloblastoma (n = 37) or low-grade cerebellar astrocytoma (n = 35) and 38 children in...
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Infantile spasms (IS) are a serious epileptic encephalopathy that occur most commonly between 2 and 14 months. The spasms occur in association with hypsarrhythmia or similar on EEG. There is often coincident psychomotor arrest or regression. Between March 2007 and May 2014, infants with IS and a compatible EEG were enrolled in a multicenter treatme...
Article
Purpose/Objective(s) In the XXX-XXXX XXXXX European randomised controlled trial, children with standard risk medulloblastoma were allocated to hyperfractionated (HFRT arm, including a partially focussed boost) or standard radiation therapy (STRT arm) followed, in both arms, by maintenance chemotherapy. Event-free survival was similar in both arms....
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Full-text available
The aim of this study is to estimate the extent to which children and adolescents with hearing impairment (HI)show higher rates of emotional and behavioural difficulties compared to normally hearing children. Studies of emotional and behavioural difficulties in children and adolescents were traced from computerized systematic searches supplemented,...
Article
There is increasing recognition of the long-term sequelae of brain tumours treated in childhood. Five year survival rates now exceed 75% and assessing the quality of survival (QoS) in multiple domains is essential to any comparison of the benefits and harms of treatment regimens. The aim of this position statement is to rationalise assessments and...
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Full-text available
Objective To determine whether the benefits of universal newborn hearing screening (UNHS) seen at age 8 years persist through the second decade. Design Prospective cohort study of a population sample of children with permanent childhood hearing impairment (PCHI) followed up for 17 years since birth in periods with (or without) UNHS. Setting Birth...
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Full-text available
We identified child-related determinants of health-related quality of life (HRQoL) in children aged 8-14 years who were treated for 2 common types of pediatric brain tumors. Questionnaire measures of HRQoL and psychometric assessments were completed by 110 children on 3 occasions over 24 months. Of these 110, 72 were within 3 years of diagnosis of...
Conference Paper
BACKGROUND: In the PNET4 European randomised controlled trial, children with standard risk medulloblastoma were allocated to HFRT or to STRT. All received maintenance chemotherapy. Event-free survival was similar between the two treatment arms. HFRT was associated with worse growth and better questionnaire-based executive function 6.1 years postdia...
Conference Paper
BACKGROUND: In the PNET4 European randomised controlled trial, children with standard risk medulloblastoma were allocated to HFRT or to STRT. All received maintenance chemotherapy. Event-free survival was similar between the two treatment arms. HFRT was associated with worse growth and better questionnaire-based executive function 6.1 years post di...
Conference Paper
Full-text available
INTRODUCTION: Obesity is a long-term morbidity for children diagnosed with CNS tumors. BMI normally declines until the age of adiposity rebound (AR), after which it increases. Tumor location, radiation therapy, or surgery near the hypothalamus increases the risk of obesity. We hypothesized involvement of the hypothalamus would result in a greater B...
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BACKGROUND: LMD in children with recurrent medulloblastoma and other PNETs carries a poor prognosis and novel therapies are urgently needed to improve disease control. Somatostatin receptor-2 (SSR-2)is overexpressed in medulloblastoma and other central PNETs and can serve as a target for radionuclide tagged somatostatin analogues like 177Lu-DOTA-TA...
Article
OBJECTIVES: To explore the possibility of combining retrospective biological and quality of survival (QoS) data, to investigate whether health-related quality of life (HRQoL) may be related to the underlying biology of medulloblastoma. METHODS: Using available data from our previous studies of SIOP UKCCSG PNET3 survivors whose tumours had been assi...
Article
Full-text available
Childhood cancer is rare but improvements in treatment over the past five decades have resulted in a cohort of more than 30,000 long-term survivors of childhood cancer in the UK with more added annually. These long-term survivors are at risk of late effects of cancer treatment which replace original tumour recurrence as the leading cause of prematu...
Article
Purpose To compare quality of survival in “standard-risk” medulloblastoma after hyperfractionated radiation therapy of the central nervous system with that after standard radiation therapy, combined with a chemotherapy regimen common to both treatment arms, in the PNET4 randomised controlled trial. Methods and Materials Participants in the PNET4 t...
Article
There is ample evidence that many children treated for brain tumors experience long-term neurocognitive deficits. The severity of those deficits is determined by a complex interaction of the child's genetic make-up and age, neuroanatomical damage caused by tumor and surgery, radiotherapy and chemotherapy, the psychosocial environment, and the inten...
Article
We aimed to investigate the relationship between movement disorders, changes on brain magnetic resonance imaging (MRI), and vigabatrin therapy in children with infantile spasms. Retrospective review and brain MRI analysis of children enrolled in the International Collaborative Infantile Spasms Study (ICISS) who developed a movement disorder on viga...
Article
Aims To evaluate the impact of the HeadSmart Campaign upon symptom interval (SI) for newly diagnosed childhood brain tumours at UK Children’s Cancer and Leukaemia Group (CCLG) treatment centres. Introduction HeadSmart’s national awareness campaign (www.headsmart.org.uk) aims to disseminate the RCPCH endorsed Brain Pathways Guideline for referral a...
Article
Gorlin's Syndrome (GS) is characterised by the development of basal cell carcinomas (BCC), jaw cysts, intracranial falx calcification and medulloblastomas. Here we present the case of a female patient with Gorlin's syndrome who, in addition to the classical manifestations, developed multiple spinal osteochrondomata and an osteosarcoma. Initially sh...
Conference Paper
Full-text available
BACKGROUND: Glutathione S-transferase (GST) enzymes are involved in detoxifying chemotherapy agents and clearing reactive oxygen species formed by radiation. In this study, we explored the relationship between the host GSTP1-105 polymorphism (rs1695), tumor GSTpi protein expression, and clinical outcomes in pediatric medulloblastoma. We hypothesize...
Article
Aims To determine the impact of the HeadSmart Campaign upon professional awareness of childhood brain tumours. Introduction The HeadSmart national awareness campaign (www.headsmart.org.uk) aims to disseminate the RCPCH endorsed Brain Pathways Guideline for brain scanning of patients with symptoms suggestive of brain tumour. The campaign aims to red...
Article
Aims IIH is the rare condition of intracranial hypertension without identifiable pathology. Associated headache and procedures to treat it can be distressing and the papilloedema has an associated risk of blindness. Previous childhood IIH epidemiological data was limited to hospital-based retrospective case series. This study reports a contemporary...
Article
Introduction The RCPCH endorsed Brain Pathways Guideline (www.headsmart.org.uk) for selecting patients for scanning with symptoms of brain tumour has been a sustained collaboration between Children's Brain Tumour Research Centre (CBTRC), Samantha Dickson Brain Tumour Trust (SDBTT), University of Southampton and the RCPCH. The clinical guideline and...