Research graph
References from Core outcome set for quality of life of family caregivers of adults with epilepsy: A Delphi consensus study. Local targets link to admitted publications; unresolved targets remain external evidence.
Prevalence and incidence of epilepsy
10.1212/wnl.0000000000003509 · 2017 · External reference
Comorbidities of epilepsy: current concepts and future perspectives
10.1016/s1474-4422(15)00225-2 · 2016 · External reference
The impact of epilepsy on quality of life: findings from a European survey
10.1016/j.yebeh.2023.109179 · 2023 · External reference
Unresolved reference
External reference
Health‐related quality of life and unmet needs of people with epilepsy and their family caregivers: a systematic scoping review
10.1016/j.yebeh.2025.110601 · 2025 · External reference
Caregivers' knowledge on epilepsy and its relationship with quality of life
2023 · External reference
Determinants of caregiver burden in male patients with epilepsy following penetrating traumatic brain injury
10.1016/j.yebeh.2021.107768 · 2021 · External reference
A journey into the unknown: an ethnographic examination of drug‐resistant epilepsy treatment and management in the United States
10.1016/j.yebeh.2021.108319 · 2021 · External reference
The economic burden of caregiving in epilepsy: an estimate based on a survey of US caregivers
10.1111/epi.16429 · 2020 · External reference
Caregiver burden and COVID‐19: how epilepsy caregivers experienced the pandemic
10.1016/j.yebeh.2023.109151 · 2023 · External reference
The impact of chronic epilepsy on the family
10.1016/1059-1311(92)90054-5 · 1992 · External reference
Burden of seizure clusters on patients with epilepsy and caregivers
10.1097/nrl.0000000000000140 · 2017 · External reference
Testimonies submitted for the Institute of Medicine report
10.1016/j.yebeh.2012.10.003 · 2012 · External reference
High risk of anxiety and depression in caregivers of adult patients with epilepsy and its negative impact on patients' quality of life
10.1016/j.yebeh.2018.11.015 · 2019 · External reference
A systematic review of quality of life in parents of children with epilepsy
10.1016/j.yebeh.2018.03.008 · 2018 · External reference
Development of an international standard set of outcomes and measurement methods for routine practice for adults with epilepsy: the international consortium for health outcomes measurement consensus recommendations
10.1111/epi.17971 · 2024 · External reference
Patient‐reported outcome measures in cancer care
10.1001/jamanetworkopen.2024.24793 · 2024 · External reference
Development of an international standard set of outcomes and measurement methods for routine practice for infants, children, and adolescents with epilepsy: the international consortium for health outcomes measurement consensus recommendations
10.1111/epi.17976 · 2024 · External reference
Research guidelines for the Delphi survey technique
10.1046/j.1365-2648.2000.t01-1-01567.x · 2000 · External reference
A critical review of the Delphi technique as a research methodology for nursing
10.1016/s0020-7489(00)00044-4 · 2001 · External reference
Using and reporting the Delphi method for selecting healthcare quality indicators: a systematic review
10.1371/journal.pone.0020476 · 2011 · External reference
Caregiving in multiple sclerosis and quality of life: a meta‐synthesis of qualitative research
10.1080/08870446.2016.1139112 · 2016 · External reference
Self‐efficacy and health‐related quality of life in family carers of people with dementia: a systematic review
10.1080/13607863.2014.915921 · 2014 · External reference
The impact of caregiving on quality of life in Parkinson's disease: a systematic review
10.1002/gps.5870 · 2023 · External reference
Family caregiver constructs and outcome measures in neuro‐oncology: a systematic review
2022 · External reference
Health, health‐related quality of life, and quality of life: what is the difference?
10.1007/s40273-016-0389-9 · 2016 · External reference
Caregiver burden: a concept analysis
2020 · External reference
Guidelines for designing and conducting Delphi consensus studies: an expert consensus Delphi study
10.1016/j.arthro.2025.03.038 · 2025 · External reference
Defining consensus: a systematic review recommends methodologic criteria for reporting of Delphi studies
10.1016/j.jclinepi.2013.12.002 · 2014 · External reference
Self‐completed patient‐reported outcome measures in adults with epilepsy: a review
10.1002/epi4.70170 · 2026 · External reference
Patient participation in Delphi surveys to develop core outcome sets: systematic review
10.1136/bmjopen-2021-051066 · 2021 · External reference
Methodological guidance for incorporating lived experience in the early stages of core outcome set development: a scoping review protocol
10.1186/s13063-025-09149-2 · 2025 · External reference
Sample size in multistakeholder Delphi surveys: at what minimum sample size do replicability of results stabilize?
10.1016/j.jclinepi.2024.111485 · 2024 · External reference
Systematic review of international Delphi surveys for core outcome set development: representation of international patients
10.1136/bmjopen-2020-040223 · 2020 · External reference
Burden in caregivers of adults with epilepsy: a critical review
10.1016/j.yebeh.2024.110260 · 2025 · External reference
Caregiving burden for adults with epilepsy and coping strategies, a systematic review
10.1016/j.yebeh.2025.110262 · 2025 · External reference
Sex‐specific and gender‐specific aspects in patient‐reported outcomes
10.1136/esmoopen-2020-000837 · 2020 · External reference
The CarerQol instrument: a new instrument to measure care‐related quality of life of informal caregivers for use in economic evaluations
10.1007/s11136-005-5994-6 · 2006 · External reference
The CarerQol instrument: a systematic review, validity analysis, and generalization reliability study
10.3390/jcm14061916 · 2025 · External reference
Helping those who help others
10.1097/01.naj.0000334528.90459.9a · 2008 · External reference
Analysis of the reliability of the modified caregiver strain index
10.1093/geronb/58.2.s127 · 2003 · External reference
Which outcomes should we measure in adult epilepsy trials? The views of people with epilepsy and informal carers
10.1016/j.yebeh.2016.01.036 · 2016 · External reference
We agree, Don't we? The Delphi method for health environments research
10.1177/1937586719887709 · 2020 · External reference
Towards a universal model of family centered care: a scoping review
10.1186/s12913-019-4394-5 · 2019 · External reference
Patient outcomes, patient experiences and process indicators associated with the routine use of patient‐reported outcome measures (PROMs) in cancer care: a systematic review
2021 · External reference
Effectiveness of routine provision of feedback from patient‐reported outcome measurements for cancer care improvement: a systematic review and meta‐analysis
10.1186/s41687-023-00578-8 · 2023 · External reference
The efficacy and cost‐effectiveness of stepped care prevention and treatment for depressive and/or anxiety disorders: a systematic review and meta‐analysis
10.1038/srep29281 · 2016 · External reference
Family caregivers' level of mastery predicts survival of patients with glioblastoma: a preliminary report
10.1002/cncr.30428 · 2017 · External reference
Defining and evaluating novel procedures for involving patients in Core outcome set research: creating a meaningful long list of candidate outcome domains
10.1186/s40900-018-0091-5 · 2018 · External reference
A review of patient and carer participation and the use of qualitative research in the development of core outcome sets
10.1371/journal.pone.0172937 · 2017 · External reference
Relationship of clinical and quality of life trajectories following the onset of seizures: findings from the UK MESS study
10.1111/j.1528-1167.2010.02973.x · 2011 · External reference
Levels of epilepsy stigma in an incident population and associated factors
10.1016/j.yebeh.2011.04.002 · 2011 · External reference
The spirituality index of well‐being: a new instrument for health‐related quality‐of‐life research
10.1370/afm.89 · 2004 · External reference
Measurement of risk for mental disorders and competence in a psychiatric epidemiologic community survey: the National Institute of Mental Health methods for the epidemiology of child and adolescent mental disorders (MECA) study
10.1007/s001270050039 · 1998 · External reference
The family APGAR: a proposal for a family function test and its use by physicians
1978 · External reference
Brief questions to identify patients with inadequate health literacy
2004 · External reference
Psychometric properties of the brief health literacy screen in clinical practice
10.1007/s11606-013-2568-0 · 2014 · External reference
