Table 1.
Characteristics of research prioritisation exercises (RPE).
| Author | Aim or purpose of the RPE (country) | Consultation method (number of rounds) | Participants in consultations | Health condition/setting | CYP age range | Format for presentation of priorities |
|---|---|---|---|---|---|---|
| Baker et al.23 | To identify and prioritise areas of paediatric palliative care research through a consensus of PPC providers and parents of patients (United States) | Delphi (4 rounds) | Parents/families: health professionals | ‘Life-threatening disease’/Paediatric palliative care | Not stated | 20 priorities grouped in 4 themes: decision making, quality improvement, care coordination to include mechanisms of support and symptom management |
| Clinton-McHarg et al.25 | Determining research priorities for young people with haematological cancer using a value-weighting approach (Australia) | Value-weighting survey method (2 stages) | Patients/CYP: parents/families: health professionals: researchers/clinical academics: AHPs: volunteers/carers/charities | Haematological cancer | Adolescents and young adults, aged between 15 and 25 years | Priorities for funding allocation grouped under four domain headings: research approach, research areas, psychosocial research and research populations |
| Morris et al.26 | To engage young people, parent carers and clinicians in a systematic process to identify and prioritise research questions regarding ways to improve the health and well-being of children and young people with neurodisability (United Kingdom) | James Lind Alliance research priority setting partnership (3 rounds) | Patients/CYP: parents/families: health professionals: researchers/clinical academics: AHPs: teachers | Neurodisability/health service and community | Children and young people (not defined) | Top 10 research questions |
| Bradley et al.34 | Objective: to identify and prioritise key research areas for AHP and nursing research in cystic fibrosis (International/Europe) | Delphi (4 rounds) | Patients/CYP: health professionals: AHPs: volunteers/carers/charities | Cystic fibrosis | Any age | 10 research themes |
| Brenner et al.35 | To identify RPs for children’s nursing in an acute care setting from the perspective of Ireland | Delphi (3 rounds) | Nurses | Any requiring acute nursing care/tertiary children’s hospital | Not reported | 27 priorities grouped in 6 themes: resuscitation concerns, clinical care concerns, end-of-life care, childhood pain, family-centred care and chronic illness |
| Downing et al.36 | To identify and prioritise global RPs for children’s palliative care | Delphi (3 rounds) | Health professionals: researchers/ clinical academics: social workers: teachers: priests | Any requiring palliative care/International Children’s Palliative Care Network | Not stated | Top 10 priorities listed (but includes 13 as 3 priorities tied on importance) with associated broad research category: psychological issues, clinical care, policies and procedures, education, clinical care, interventions and models of care, legislation and ethics, and other |
| Fletcher-Johnston et al.37 | To identify RPs of researchers and clinicians in adolescent healthcare practices across Canada in relation to healthcare transitions for children with chronic life-threatening conditions | Delphi (3 rounds) | Health professionals: researchers/clinical academics: AHPs: social workers | ‘Chronic life-threatening conditions’ | ‘Adolescents’ (RPE focuses on healthcare transitions) | Top 5 research questions |
| Liossi et al.38 | To prioritise clinical therapeutic uncertainties in paediatric pain and palliative care (United Kingdom) | Nominal Group Technique (modified) (3 decision stages) | Parents/families: Health professionals | Paediatric pain and palliative care/The Pain and Palliative Care Clinical Studies Group (CSG) (of the UK NIHR Clinical Research Network-Children) | Not stated, although final RPs cover 0–18 years | Top 10 research priorities in PICO format |
| Malcolm et al.39 | To identify and prioritise future research priorities for children’s hospice care in Scotland from the perspective of key stakeholder groups | Delphi (3 rounds) | Parents/families: health professionals: social workers: teachers: volunteers/carers/charities: policy makers: national organisations in palliative care | Any LLC/Children’s Hospice Association Scotland hospices | Not stated | Top 15 research priorities |
| Quinn et al.40 | To identify key research priorities for paediatric palliative care in Ireland | Delphi (4 rounds) | Health professionals: researchers/clinical academics | Any LLC/National University, children’s hospitals and voluntary sector | Not stated | Top 9 research priorities |
| Ramelet and Gill41 | To identify national PICU nursing research priorities in Australia and New Zealand | Delphi (3 rounds) | Nurses | Any requiring PIC nursing/PICU | Not stated (mention infants, children and adolescents) | Top 9 research priorities |
| Steele et al.42 | To achieve consensus among palliative care practitioners and researchers regarding the identification of pertinent lines of research (Canada) | Delphi (3 rounds) | Health professionals: social workers: administrator | Any requiring palliative and end-of-life care/PEDPALNET, a pan-Canadian research collaboration for paediatric palliative and end-of-life care | Not stated | 4 priority research questions |
| Tume et al.43 | To identify and prioritise nursing research topics of importance as defined by European PIC nurses | Delphi (3 rounds) | Health professionals: researchers/clinical academics | Any requiring PIC nursing care/PICU (or ICU with children) | Not reported | Top 20 research statements. Also present top 9 research domains |
| Uhm et al.44 | To discover the research questions for preterm birth and to grade them according to their importance for infants and families (United Kingdom) | Nominal Group Technique and James Lind Alliance’s five stages of prioritisation (3 rounds) | Patients/CYP: parents/families: health professionals: volunteers/carers/charities | Pre-term birth | Inferred: babies born before 32 weeks gestation | Top 15 research priority questions.a |
| Wielenga et al.45 | To identify and prioritise neonatal intensive care nursing research topics across Europe | Delphi (3 rounds) | Nurses | Any requiring NICU care/European NICU | Neonates | Top 20 research statements. Also present top 8 research domains |
| Zeigler and Decker-Walters 46 | To establish research questions and priorities in psychosocial care for adolescents with implantable cardioverter defibrillators (United States) | Delphi (3 rounds) | Health professionals: researchers/clinical academics: AHPs | Any requiring an implantable cardioverter defibrillator (ICD) | Adolescents (age range not reported) | Top 10 issues |
| Aylott47 | To identify nursing RPs in PICUs offering ECMO therapy (United Kingdom) | Delphi (3 rounds) | Nurses | Any requiring ECMO therapy/PICU | Not stated (involves mainly mature newborns) | 11 priorities grouped under 4 headings: labour intensity, consumerism, ethical dilemmas and clinical |
| de Vries et al.48 | Inform organisational decision-making and policy development regarding future research priorities and inform the wider community of the research intentions for a hospice in New Zealand | Delphi (3 rounds) | Patients/CYP: parents/families: health professionals: volunteers/carers/charities | End of life/hospice | Any age | 10 priorities (CYP family, etc.) under 4 topic headings: decision-making, bereavement and loss, symptom management, and recognition of need and response of service. 23 priorities (staff, etc.) under 6 topic headings: symptom management, aged care,b education, community, patient/family, bereavement and support for young people |
| Fochtman and Hinds 49 | To identify the nursing research priorities in a paediatric clinical trials cooperative group (United States) | Delphi (2 rounds) | Nurses | Oncology patients/Nursing Oncology Group | Paediatric (not defined) | Top 10 research priorities |
| Medlow and Patterson50 | To determine and implement priorities within Australian adolescent and young adult cancer research | Value-weighting survey method (2 stages) | Patients/ CYP: parents/families: health professionals: social workers: policy makers | Cancer | Adolescent and young adults (AYA) | Distribution of funding for research topics is displayed in 4 groupings: biomedical and clinical medicine research sub-topics, psychosocial research sub-topics, health services research sub-topics, research populations and stages of care |
| Monterosso et al.51 | Priorities for paediatric cancer nursing research in Western Australia | Delphi (2 rounds) | Nurses | Cancer/sole paediatric tertiary referral centre in Western Australia | Inferred: site caters for children age 15 years and less | Top 10 research topics overall. Also priorities for research categories; and topics important to patient care, topics important to family care and topics important to nursing |
| Soanes et al.52 | To establish nursing research priorities on a paediatric haematology, immunology oncology, and infectious diseases unit (United Kingdom) | Delphi (4 rounds) | Nurses | Cancer/paediatric oncology unit | Not stated | 21 priorities are grouped under 4 categories: nursing procedures, professional issues, psychosocial care needs and care delivery systems |
| Williams et al.53 | To identify research priorities with nurses at a tertiary children’s hospital in the United Kingdom | Nominal group technique (4 rounds) | Nurses | Any condition warranting hospital care/one tertiary children’s hospital (GOSH) | Not stated | Top 5 research themes |
| Wilson et al.54 | Identify research priorities for nursing care of infants, children and adolescents at a tertiary paediatric hospital in Western Australia | Delphi (3 rounds) | Nurses | Any condition requiring referral to a tertiary centre/sole paediatric tertiary referral centre | Infants, children and adolescents | Top 10 items overall. Also present top research topics: of greatest value to patients; of greatest value to families; and topics that would most facilitate health in CYP to reduce hospitalisation |
CYP: children and young people; PICO: population, intervention, comparator and outcome; PICU: Paediatric Intensive Care Unit; ICU: Intensive Care Unit; NICU: Neonatal Intensive Care Unit; ECMO: extracorporeal membrane oxygenation; NIHR: National Institute for Health Research; LLC: Life-Limiting Condition.
a
Three of the top 10 priorities excluded as relate to mothers/birth rather than care of newborn.
b
Priorities excluded as not relevant to CYP.