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Research priorities for childhood chronic conditions: a workshop report
  1. Pamela Lopez-Vargas1,2,
  2. Allison Tong2,3,
  3. Sally Crowe4,
  4. Stephen I Alexander2,5,
  5. Patrina Ha Yuen Caldwell2,5,6,
  6. Dianne E Campbell6,7,
  7. Jennifer Couper8,9,
  8. Andrew Davidson10,11,12,
  9. Sukanya De5,
  10. Dominic A Fitzgerald13,
  11. Suzy Haddad14,
  12. Sophie Hill15,
  13. Martin Howell2,3,
  14. Adam Jaffe16,17,
  15. Laura J James2,3,
  16. Angela Ju2,3,
  17. Karine E Manera2,3,
  18. Anne McKenzie18,
  19. Angie M Morrow6,19,
  20. Harrison Lindsay Odgers2,3,
  21. Ross Pinkerton20,
  22. Angelique F Ralph2,21,
  23. Peter Richmond22,23,
  24. Peter J Shaw24,
  25. Davinder Singh-Grewal25,
  26. Anita van Zwieten2,3,
  27. Melissa Wake11,12,26,
  28. Jonathan C Craig2,27
  29. on behalf of The Kaleidoscope Project workshop investigators
    1. 1 Kids Research Institute, The Children’s Hospital, Westmead, New South Wales, Australia
    2. 2 Centre for Kidney Research, The Children’s Hospital, Westmead, New South Wales, Australia
    3. 3 Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia
    4. 4 Crowe Associates Ltd, Oxon, UK
    5. 5 Department of Nephrology, The Children’s Hospital, Westmead, New South Wales, Australia
    6. 6 Discipline of Child and Adolescent Health, The University of Sydney, Sydney, New South Wales, Australia
    7. 7 Department of Allergy and Immunology, The Children’s Hospital, Westmead, New South Wales, Australia
    8. 8 Women’s and Children’s Hospital Adelaide, North Adelaide, South Australia, Australia
    9. 9 Robinson Research Institute, The University of Adelaide, Adelaide, South Australia, Australia
    10. 10 Department of Anaesthesiology, Royal Children’s Hospital, Melbourne, Victoria, Australia
    11. 11 Department of Paediatrics, The University of Melbourne, Melbourne, Victoria, Australia
    12. 12 Murdoch Children’s Research Institute, Melbourne, Victoria, Australia
    13. 13 Department of Respiratory Medicine, The Children’s Hospital, Westmead, New South Wales, Australia
    14. 14 Patient and Carer Representative, Sydney, Australia
    15. 15 Centre for Health Communication and Participation, La Trobe University, Melbourne, Victoria, Australia
    16. 16 Department of Respiratory Medicine, Sydney Children’s Hospital, Randwick, New South Wales, Australia
    17. 17 School of Women’s and Children’s Health, University of New South Wales, Sydney, New South Wales, Australia
    18. 18 Western Australian Health Translation Network, The University of Western Australia, Perth, Western Australia, Australia
    19. 19 Kids Rehab, The Children’s Hospital, Westmead, New South Wales, Australia
    20. 20 Hummingbird House - Children’s Hospice, Brisbane, Queensland, Australia
    21. 21 School of Psychology, The University of Sydney, Sydney, New South Wales, Australia
    22. 22 Division of Paediatrics, School of Medicine, The University of Western Australia, Perth, Western Australia, Australia
    23. 23 Department of General Paediatrics and Immunology, Princess Margaret Hospital for Children, Subiaco, Western Australia, Australia
    24. 24 Cancer Centre for Children, The Children’s Hospital, Westmead, New South Wales, Australia
    25. 25 Department of Rheumatology, The Children’s Hospital, Westmead, New South Wales, Australia
    26. 26 Department of Paediatrics & The Liggins Institute, The University of Auckland, Auckland, New Zealand
    27. 27 College of Medicine and Public Health, Flinders University, Adelaide, South Australia, Australia
    1. Correspondence to Dr Pamela Lopez-Vargas, Kids Research Institute, The Children’s Hospital, Westmead NSW 2145, Australia; pamela.lopezvargas{at}health.nsw.gov.au

    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.

    • childhood chronic conditions
    • priority setting partnerships
    • qualitative research
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    Footnotes

    • Contributors PL-V conceptualised and designed the study, contributed to data collection analysis, drafted the initial manuscript, reviewed and revised the manuscript, and approved the final manuscript as submitted. AT conceptualised and designed the study, contributed to data collection and analysis, reviewed and revised the manuscript, and approved the final manuscript as submitted. SC contributed to study design, data collection and analysis, reviewed and revised the manuscript and approved the final version as submitted. SIA, DEC, DAF, AMM, HLO, PJS, DS-G contributed to data collection, reviewed and revised the manuscript and approved the final version as submitted. PHYC, AD, SH, PR, MW contributed to study design, reviewed and revised the manuscript and approved the final version as submitted. JCC, SD, SH, AJ, AMK, RP, LJJ, AJ, KEM, AFR, AvZ contributed to study design, data collection, reviewed and revised the manuscript and approved the final version as submitted. MH contributed to data analysis, reviewed and revised the manuscript and approved the final version as submitted. JCC conceptualised and designed the study, contributed to the analysis, reviewed and revised the manuscript and approved the final manuscript as submitted.All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

    • Funding This project is supported by a NSW Ministry of Health, Office for Health and Medical Research (OHMR) project grant. AT is supported by the National Health and Medical Research Council (NHMRC) Fellowship (1106716). MW is supported by NHMRC Senior Research Fellowship and Cure Kids New Zealand. Research at the Murdoch Children’s Research Institute is supported by the Victorian Government’s Operational Infrastructure Programme. AvZ is funded by an NHMRC postgraduate scholarship (APP1115259).

    • Competing interests None declared.

    • Ethics approval Human Research Ethics Committees at the University of Sydney (2016/2018) and the Children’s Hospital at Westmead (HREC/16/SCHN/124).

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data sharing statement We have included all our data in the manuscript.

    • Collaborators Young people, Parents/Caregivers: Adam Bowyer, Carolina Valerio (The Children’s Hospital at Westmead), Caron Kambi, Chandana Guha (Transplant Australia), Chris Walker (Parenteral Nutrition Down Under), Dane Kambi, Fred Elharris, Georgia Pagano, Jen Stumbles (The Children’s Hospital at Westmead), Josephine Gile, Karen Wong, Kylie Black, Melissa Bowyer, Mustapha Harris, Peggy Lin (The Children’s Hospital at Westmead), Penny Jones (Sydney Children’s Hospital), Peter McGann, Pietro Pagano, Rema Elhassan, Sophie Cole, Suzy Haddad , Zoe Fernance (The Children’s Hospital at Westmead). Representatives from consumer organisations: Anne McKenzie (Consumer and Community Health Research Network, the University of Western Australia School of Population Health), Anthony Brown (Health Consumers NSW), Jayne Blake (HeartKids Australia), Jessica Keath (Children’s Cancer Institute), Juliet Chandler (Arthritis & Osteoporosis NSW), Laura Griffin (Sydney Children’s Hospitals Network), Lizzy Harnett (Association for the Wellbeing of Children in Healthcare (AWCH)), Maria Lorenzo Fernandez (Little Wellness Program), Megan Jackson (Australian Research Alliance for Children and Youth, University of Canberra), Michelle Haskard (Australasian Society of Clinical Immunology and Allergy (ASCIA)), Nettie Burke (Cystic Fibrosis Australia), Robert Gardos (Polycystic Kidney Disease Foundation of Australia), Siobhan Brophy (National Asthma Council Australia). Health professionals (Discipline): Adam Jaffe (Respiratory medicine) (Sydney Children’s Hospitals Network - Randwick & University of NSW), Alison Bowers (Nurse, researcher palliative care) (Queensland University of Technology), Allison Tong (Researcher) (The University of Sydney), Angela Ju (Researcher) (The University of Sydney), Angelique Ralph (Researcher) (The University of Sydney), Anita van Zwieten (Researcher) (The University of Sydney), Antonio Penna (Paediatrician, Policy) (NSW Health—Office for Health and Medical Research), Benjamin Wyse (Researcher) (Macquarie University), Camilla Scanlan (Researcher) (The University of Sydney), Carolyn Rogers (Nurse, genetics) (The GOLD Service (Genetics of Learning Disability)), Chris Cowell (Paediatrician) (Sydney Children’s Hospitals Network), Grace Spencer (Researcher) (The University of Sydney), Harriet Hiscock (Paediatrician) (Centre for Community Child Health, Murdoch Children’s Research Institute, Royal Children’s Hospital), Harrison Odgers (Researcher) (The University of Sydney), Helen Puusepp-Benazzouz (Developmental paediatrics) (The Children’s Hospital at Westmead), Husna Razee (Researcher, chronic illness) (University of New South Wales), Jackie Boyle (Nurse, genetics) (NSW Genetics of Learning Disability Service, Hunter Genetics), Jan Belcher (Nurse, immunology) (John Hunter Children’s Hospital), Jenny Couper (Endocrinology, diabetes) (Women’s and Children’s Hospital, South Australia), Jonathan Craig (Nephrologist) (The University of Sydney), Justyna Ozimek-Kulik (Renal medicine) (Sydney Children’s Hospitals Network), Karen Bau (Physiotherapist) (The Children’s Hospital at Westmead), Karine Manera (Researcher) (The University of Sydney), Laura James (Researcher) (University of Sydney, Children’s Hospital at Westmead), Laurel Mimmo (Researcher, quality improvement) (University of NSW; Sydney Children’s Hospital, Randwick), Leanne Hallowell (Researcher) (Australian Catholic University), Margaret Wallen (Researcher, cerebral palsy) (Australian Catholic University), Michael Bowden (Psychiatrist) (Sydney Children’s Hospitals Network), Natasha Nassar (Researcher) (Menzies Centre for Health Policy, University of Sydney), Pamela Lopez-Varga (Researcher)(The Children’s Hospital at Westmead), Petra Karlsson (Researcher) (Cerebral Palsy Alliance, The University of Sydney, Australia), Ross Pinkerton (Oncologist) (Lady Cilento Children’s Hospital, Sally Crowe), Samantha Carlson (Researcher, immunisation) (The Children’s Hospital at Westmead, National Centre for Immunisation Research and Surveillance, University of Sydney), Sharron Hall (Researcher) (Hunter Medical Research Institute), Sukanya De (Paediatrian) (The Children’s Hospital at Westmead), Suzanne Sheppard-Law (Nurse, researcher, hepatology) (Sydney Children’s Hospitals Network and University of Technology, Sydney), Yana Wilson (Researcher, cerebral palsy) (Cerebral Palsy Alliance, University of Sydney, Garvan).

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