Research priorities for childhood chronic conditions: a workshop report

Pamela Lopez-Vargas; Allison Tong; Sally Crowe; Stephen I Alexander; Patrina Ha Yuen Caldwell; Dianne E Campbell; Jennifer Couper; Andrew Davidson; Sukanya De; Dominic A Fitzgerald; Suzy Haddad; Sophie Hill; Martin Howell; Adam Jaffe; Laura J James; Angela Ju; Karine E Manera; Anne McKenzie; Angie M Morrow; Harrison Lindsay Odgers; Ross Pinkerton; Angelique F Ralph; Peter Richmond; Peter J Shaw; Davinder Singh-Grewal; Anita van Zwieten; Melissa Wake; Jonathan C Craig; Kaleidoscope Project workshop investigators

doi:10.1136/archdischild-2018-315628

Research priorities for childhood chronic conditions: a workshop report

Arch Dis Child. 2019 Mar;104(3):237-245. doi: 10.1136/archdischild-2018-315628. Epub 2018 Oct 2.

Authors

Pamela Lopez-Vargas^{1

2}, Allison Tong^{2

3}, Sally Crowe⁴, Stephen I Alexander^{2

5}, Patrina Ha Yuen Caldwell^{2

5

6}, Dianne E Campbell^{6

7}, Jennifer Couper^{8

9}, Andrew Davidson^{10

11

12}, Sukanya De⁵, Dominic A Fitzgerald¹³, Suzy Haddad¹⁴, Sophie Hill¹⁵, Martin Howell^{2

3}, Adam Jaffe^{16

17}, Laura J James^{2

3}, Angela Ju^{2

3}, Karine E Manera^{2

3}, Anne McKenzie¹⁸, Angie M Morrow^{6

19}, Harrison Lindsay Odgers^{2

3}, Ross Pinkerton²⁰, Angelique F Ralph^{2

21}, Peter Richmond^{22

23}, Peter J Shaw²⁴, Davinder Singh-Grewal²⁵, Anita van Zwieten^{2

3}, Melissa Wake^{11

12

26}, Jonathan C Craig^{2

27}; Kaleidoscope Project workshop investigators

Collaborators

Kaleidoscope Project workshop investigators:
Adam Bowyer, Carolina Valerio, Caron Kambi, Chandana Guha, Chris Walker, Dane Kambi, Fred Elharris, Georgia Pagano, Jen Stumbles, Josephine Gile, Karen Wong, Kylie Black, Melissa Bowyer, Mustapha Harris, Peggy Lin, Penny Jones, Peter Mcgann, Pietro Pagano, Rema Elhassan, Sophie Cole, Suzy Haddad, Zoe Fernance Anne McKenzie, Anthony Brown, Jayne Blake, Jessica Keath, Juliet Chandler, Laura Griffin, Lizzy Harnett, Maria Lorenzo Fernandez, Megan Jackson, Michelle Haskard, Nettie Burke, Robert Gardos, Siobhan Brophy, Adam Jaffe, Alison Bowers, Allison Tong, Angela Ju, Angelique Ralph, Anita Van Zwieten, Antonio Penna, Benjamin Wyse, Camilla Scanlan, Carolyn Rogers, Chris Cowell, Grace Spencer, Harriet Hiscock, Harrison Odgers, Helen Puusepp-Benazzouz, Husna Razee, Jackie Boyle, Jan Belcher, Jenny Couper, Jonathan Craig, Justyna Ozimek-Kulik, Karen Bau, Karine Manera, Laura James, Laurel Mimmo, Leanne Hallowell, Margaret Wallen, Michael Bowden, Natasha Nassar, Pamela Lopez-Varga, Petra Karlsson, Ross Pinkerton, Samantha Carlson, Sharron Hall, Sukanya De, Suzanne Sheppard-Law, Yana Wilson

Affiliations

¹ Kids Research Institute, The Children's Hospital, Westmead, New South Wales, Australia.
² Centre for Kidney Research, The Children's Hospital, Westmead, New South Wales, Australia.
³ Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
⁴ Crowe Associates Ltd, Oxon, UK.
⁵ Department of Nephrology, The Children's Hospital, Westmead, New South Wales, Australia.
⁶ Discipline of Child and Adolescent Health, The University of Sydney, Sydney, New South Wales, Australia.
⁷ Department of Allergy and Immunology, The Children's Hospital, Westmead, New South Wales, Australia.
⁸ Women's and Children's Hospital Adelaide, North Adelaide, South Australia, Australia.
⁹ Robinson Research Institute, The University of Adelaide, Adelaide, South Australia, Australia.
¹⁰ Department of Anaesthesiology, Royal Children's Hospital, Melbourne, Victoria, Australia.
¹¹ Department of Paediatrics, The University of Melbourne, Melbourne, Victoria, Australia.
¹² Murdoch Children's Research Institute, Melbourne, Victoria, Australia.
¹³ Department of Respiratory Medicine, The Children's Hospital, Westmead, New South Wales, Australia.
¹⁴ Patient and Carer Representative, Sydney, Australia.
¹⁵ Centre for Health Communication and Participation, La Trobe University, Melbourne, Victoria, Australia.
¹⁶ Department of Respiratory Medicine, Sydney Children's Hospital, Randwick, New South Wales, Australia.
¹⁷ School of Women's and Children's Health, University of New South Wales, Sydney, New South Wales, Australia.
¹⁸ Western Australian Health Translation Network, The University of Western Australia, Perth, Western Australia, Australia.
¹⁹ Kids Rehab, The Children's Hospital, Westmead, New South Wales, Australia.
²⁰ Hummingbird House - Children's Hospice, Brisbane, Queensland, Australia.
²¹ School of Psychology, The University of Sydney, Sydney, New South Wales, Australia.
²² Division of Paediatrics, School of Medicine, The University of Western Australia, Perth, Western Australia, Australia.
²³ Department of General Paediatrics and Immunology, Princess Margaret Hospital for Children, Subiaco, Western Australia, Australia.
²⁴ Cancer Centre for Children, The Children's Hospital, Westmead, New South Wales, Australia.
²⁵ Department of Rheumatology, The Children's Hospital, Westmead, New South Wales, Australia.
²⁶ Department of Paediatrics & The Liggins Institute, The University of Auckland, Auckland, New Zealand.
²⁷ College of Medicine and Public Health, Flinders University, Adelaide, South Australia, Australia.

PMID: 30279157
DOI: 10.1136/archdischild-2018-315628

Abstract

Background: Chronic conditions are the leading cause of mortality, morbidity and disability in children. However, children and caregivers are rarely involved in identifying research priorities, which may limit the value of research in supporting patient-centred practice and policy.

Objective: To identify priorities of patients, caregivers and health professionals for research in childhood chronic conditions and describe the reason for their choices.

Setting: An Australian paediatric hospital and health consumer organisations.

Methods: Recruited participants (n=73) included patients aged 8 to 14 years with a chronic condition (n=3), parents/caregivers of children aged 0 to 18 years with a chronic condition (n=19), representatives from consumer organisations (n=13) and health professionals including clinicians, researches (n=38) identified and discussed research priorities. Transcripts were thematically analysed.

Results: Seventy-eight research questions were identified. Five themes underpinned participants' priorities: maintaining a sense of normality (enabling participation in school, supporting social functioning, promoting understanding and acceptance), empowering self-management and partnership in care (overcoming communication barriers, gaining knowledge and skills, motivation for treatment adherence, making informed decisions, access and understanding of complementary and alternative therapies),strengthening ability to cope (learning to have a positive outlook, preparing for home care management, transitioning to adult services), broadening focus to family (supporting sibling well-being, parental resilience and financial loss, alleviating caregiver burden), and improving quality and scope of health and social care (readdressing variability and inequities, preventing disease complications and treatment side effects, identifying risk factors, improving long-term outcomes, harnessing technology, integrating multidisciplinary services).

Conclusion: Research priorities identified by children, caregivers and health professionals emphasise a focus on life participation, psychosocial well-being, impact on family and quality of care. These priorities may be used by funding and policy organisations in establishing a paediatric research agenda.

Keywords: childhood chronic conditions; priority setting partnerships; qualitative research.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adolescent
Attitude to Health
Child
Child, Preschool
Chronic Disease / therapy*
Consensus
Consumer Behavior
Health Priorities*
Hospitals, Pediatric
Humans
Infant
Infant, Newborn
New South Wales
Patient Participation