Key Stakeholder Priorities for the Review and Update of the Australian Guide to Diagnosis of Fetal Alcohol Spectrum Disorder: A Qualitative Descriptive Study

Nicole Hayes; Lisa K Akison; Sarah Goldsbury; Nicole Hewlett; Elizabeth J Elliott; Amy Finlay-Jones; Dianne C Shanley; Kerryn Bagley; Andi Crawford; Haydn Till; Alison Crichton; Rowena Friend; Karen M Moritz; Raewyn Mutch; Sophie Harrington; Andrew Webster; Natasha Reid

doi:10.3390/ijerph19105823

Key Stakeholder Priorities for the Review and Update of the Australian Guide to Diagnosis of Fetal Alcohol Spectrum Disorder: A Qualitative Descriptive Study

Int J Environ Res Public Health. 2022 May 10;19(10):5823. doi: 10.3390/ijerph19105823.

Authors

Nicole Hayes¹, Lisa K Akison^{1

2}, Sarah Goldsbury³, Nicole Hewlett^{4

5

6}, Elizabeth J Elliott^{7

8}, Amy Finlay-Jones^{9

10}, Dianne C Shanley^{11

12}, Kerryn Bagley^{13

14}, Andi Crawford^{15

16}, Haydn Till¹⁷, Alison Crichton^{18

19}, Rowena Friend²⁰, Karen M Moritz^{1

2}, Raewyn Mutch^{9

21

22

23

24}, Sophie Harrington⁶, Andrew Webster²⁵, Natasha Reid¹

Affiliations

¹ Child Health Research Centre, The University of Queensland, Brisbane, QLD 4072, Australia.
² School of Biomedical Sciences, The University of Queensland, Brisbane, QLD 4072, Australia.
³ Māori Indigenous Health Innovation, University of Otago Christchurch, Christchurch 8013, New Zealand.
⁴ Centre for Healthcare Transformation, Queensland University of Technology, Brisbane, QLD 4059, Australia.
⁵ Wellbeing and Preventable Chronic Diseases Division, Menzies School of Health Research, Darwin, NT 0811, Australia.
⁶ National Organisation for Fetal Alcohol Spectrum Disorder Australia, Adelaide, SA 5000, Australia.
⁷ Faculty of Medicine and Health, Specialty of Child and Adolescent Health, The University of Sydney, Sydney, NSW 2006, Australia.
⁸ The Sydney Children's Hospitals Network, Sydney, NSW 2145, Australia.
⁹ Telethon Kids Institute, Perth, WA 6009, Australia.
¹⁰ School of Population Health, Curtin University, Perth, WA 6102, Australia.
¹¹ Menzies Health Institute of Queensland, Griffith University, Gold Coast, QLD 4222, Australia.
¹² School of Applied Psychology, Griffith University, Gold Coast, QLD 4222, Australia.
¹³ La Trobe Rural Health School, La Trobe University, Bendigo, VIC 3552, Australia.
¹⁴ Living with Disability Research Centre, La Trobe University, Melbourne, VIC 3083, Australia.
¹⁵ Department of Psychological Medicine, Faculty of Medical and Health Science, The University of Auckland, Auckland 1023, New Zealand.
¹⁶ Te Ara Manapou, Parenting and Pregnancy Service, Hawke's Bay District Health Board, Hastings 4120, New Zealand.
¹⁷ Child Development Service, Gold Coast Hospital and Health Service, Southport, QLD 4215, Australia.
¹⁸ Victoria Fetal Alcohol Service, Monash Children's Hospital, Clayton, VIC 3163, Australia.
¹⁹ Department of Paediatrics, Monash University, Clayton, VIC 3163, Australia.
²⁰ Patches Assessment Service, Berrimbah, NT 0828, Australia.
²¹ Child and Adolescent Health Service, Department of Health, Perth Children's Hospital, Perth, WA 6009, Australia.
²² Faculty of Health Sciences, Curtin Medical School, Curtin University, Perth, WA 6102, Australia.
²³ School of Medicine, Dentistry and Health Sciences, University of Western Australia, Perth, WA 6009, Australia.
²⁴ Harvard Program for Refugee Trauma, Continuing Medical Education, Harvard Medical School, Boston, MA 02115, USA.
²⁵ West Moreton Health, Ipswich, QLD 4305, Australia.

Abstract

Since the 2016 release of the Australian Guide to the Diagnosis of Fetal Alcohol Spectrum Disorder (FASD), considerable progress has been made in the identification and diagnosis of the disorder. As part of a larger process to review and update the Guide, the aim of this study was to identify review priorities from a broad range of stakeholders involved in the assessment and diagnosis of FASD. Sixty-two stakeholders, including healthcare practitioners, researchers, other specialists, individuals with cultural expertise, lived experience and consumer representatives completed an online survey asking them to describe up to five priorities for the review of the Australian Guide to the Diagnosis of FASD. A total of 267 priorities were described. Content analysis of responses revealed priority areas relating to diagnostic criteria (n = 82, 30.7%), guideline content (n = 91, 34.1%), guideline dissemination (n = 15, 5.6%) and guideline implementation (n = 63, 23.6%). Other considerations included prevention and screening of FASD (n = 16, 6%). Engaging stakeholders in setting priorities will ensure the revised Australian Guide can be as relevant and meaningful as possible for the primary end-users and that it meets the needs of individuals with lived experience who will be most affected by the diagnosis.

Keywords: assessment and diagnosis; clinical guidelines; fetal alcohol spectrum disorder; prenatal alcohol exposure.

Publication types

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

MeSH terms

Australia
Female
Fetal Alcohol Spectrum Disorders* / diagnosis
Fetal Alcohol Spectrum Disorders* / prevention & control
Humans
Mass Screening
Pregnancy
Qualitative Research
Surveys and Questionnaires

Grants and funding

This research was funded by the Australian Government Department of Health Drug and Alcohol Program (GO2647). The research was conducted by a consortium that included the following institutions: The University of Queensland, University of Sydney, Telethon Kids Institute, La Trobe University, Griffith University, Gold Coast Hospital and Health Service, National Organisation for Fetal Alcohol Spectrum Disorder, Russell Family Fetal Alcohol Disorders Association, Patches Paediatrics, Victoria Fetal Alcohol Service, West Moreton Health and FASD CARE. EE is supported by an Australian Medical Research Futures Fund/National Health and Medical Research Council Next Generation Fellowship (#1135959). A.F-J is supported by a Healthway WA Senior Research Fellowship.