Acceptability and feasibility of an online information linker service for caregivers who have a child with genetic epilepsy: a mixed-method pilot study protocol

Caregiver assessment of quality of life in individuals with genetic developmental and epileptic encephalopathies

(2022) Stacey R. Cohen et al.   DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY

Rare diseases research and policy in Australia: On the journey to equitable care

(2021) Kaustuv Bhattacharya et al.   JOURNAL OF PAEDIATRICS AND CHILD HEALTH

Progress, challenges and global approaches to rare diseases

(2021) Stephen C. Groft et al.   ACTA PAEDIATRICA

Psychosocial impact of genetic testing on parents of children with developmental and epileptic encephalopathy

(2021) Suzanne M Nevin et al.   DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY

Parental health spillover effects of paediatric rare genetic conditions

(2020) You Wu et al.   QUALITY OF LIFE RESEARCH

Defining Coordinated Care for People with Rare Conditions: A Scoping Review

(2020) Holly Walton et al.   International Journal of Integrated Care

Deciphering the concepts behind “Epileptic encephalopathy” and “Developmental and epileptic encephalopathy”

(2019) Ingrid E. Scheffer et al.   EUROPEAN JOURNAL OF PAEDIATRIC NEUROLOGY

Carer Social Care-Related Quality of Life Outcomes: Estimating English Preference Weights for the Adult Social Care Outcomes Toolkit for Carers

(2019) Laurie Batchelder et al.   VALUE IN HEALTH

A population-based cost-effectiveness study of early genetic testing in severe epilepsies of infancy

(2018) Katherine B. Howell et al.   EPILEPSIA

Symptoms of depression, anxiety, and stress in parents of young children with epilepsy: A case controlled population-based study

(2018) Colin Reilly et al.   EPILEPSY & BEHAVIOR

Assessing the impact of caring for a child with Dravet syndrome: Results of a caregiver survey

(2018) Jonathan D. Campbell et al.   EPILEPSY & BEHAVIOR

Exploring the needs and challenges of parents and their children in childhood epilepsy care: A qualitative study

(2018) Su Woan Wo et al.   EPILEPSY & BEHAVIOR

Answering medical questions at the point of care: a cross-sectional study comparing rapid decisions based on PubMed and Epistemonikos searches with evidence-based recommendations developed with the GRADE approach

(2017) Ariel Izcovich et al.   BMJ Open

Parental anxiety in childhood epilepsy: A systematic review

(2016) Chloe Jones et al.   EPILEPSIA

Taking the Long View

(2015) Judith H. Hibbard et al.   MEDICAL CARE RESEARCH AND REVIEW

Bereavement Follow-Up After the Death of a Child as a Standard of Care in Pediatric Oncology

(2015) Wendy G. Lichtenthal et al.   PEDIATRIC BLOOD & CANCER

Factor structure and construct validity of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer)

(2015) Stacey E. Rand et al.   QUALITY OF LIFE RESEARCH

The Patient Activation Measure: a validation study in a neurological population

(2015) Tanya L. Packer et al.   QUALITY OF LIFE RESEARCH

Hospital-based bereavement services following the death of a child: A mixed study review

(2014) Leigh A Donovan et al.   PALLIATIVE MEDICINE

A Cost-Consequences Analysis of a Primary Care Librarian Question and Answering Service

(2012) Jessie McGowan et al.   PLoS One

Parental Coping and Childhood Epilepsy

(2011) Lisa V. Duffy   JOURNAL OF NEUROSCIENCE NURSING

Care for patients with ultra-rare disorders

(2010) Raoul CM. Hennekam   European Journal of Medical Genetics

The qualitative content analysis process

(2008) Satu Elo et al.   JOURNAL OF ADVANCED NURSING