Measuring health outcome in paediatrics: Development of the RAHC measure of function

Dossetor, David; Liddle, J. L. M.; Mellis, Craig

doi:10.1111/j.1440-1754.1996.tb00966.x

Cited by 22 publications

(17 citation statements)

References 15 publications

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“…Three validated and suitable tools were identified: the Health Utilities Index Mark II (HUI- II) (assessing health functioning) [14]; the Impact on Family scale (IOF) [15]; and the Royal Alexandra Hospital for Children Measure of Function (RAHC MOF) [16]. The HUI-II is validated for children aged 5 years or more while the RAHC MOF is validated for all paediatric/adolescent age groups [14,16]. The RAHC MOF was developed in an Australian paediatric hospital as a global measure of health and is designed to be completed by either a medical professional or parent to categorise health functioning of the child.…”

Section: Methodsmentioning

confidence: 99%

“…The RAHC MOF was developed in an Australian paediatric hospital as a global measure of health and is designed to be completed by either a medical professional or parent to categorise health functioning of the child. A score of one (superior functioning) to ten (need for constant supervision, high medical dependency) is then allocated (Table 1) [16]. The IOF scale is a 24-item tool using a 4-point Likert scale (strongly agree to strongly disagree) to score the level of agreement with each of the 24 statements.…”

Section: Methodsmentioning

confidence: 99%

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Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support

Anderson

Elliott

Zurynski

2013

Orphanet J Rare Dis

220

263

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BackgroundFamilies of children living with a rare disease report significant health and social burden, however, few studies have systematically examined family needs by using validated tools to assess the scope and extent of this burden. Our aim was to develop a comprehensive survey to assess health, psychosocial and financial impacts on Australian families caring for a child with a rare disease.MethodsWe developed a self-administered survey for parents/carers incorporating pre-validated tools. The survey included questions about experiences of diagnosis, health services use and needs, needs for peer and financial supports. Forty-seven families attending the state-wide Genetic Metabolic Disorders Service at the Children’s Hospital at Westmead, Sydney were invited to participate.ResultsOf 46 families who received the survey, 30 (65%) completed it. Most (93%) found the survey acceptable and relevant (91%). Patients were 1–17 years old, 14 (47%) male, and 12 (40%) non-Caucasian. Eighteen (60%) had a lysosomal storage disease and 12(40%) had a mitochondrial disorder. Eleven (38%) saw 3–5 doctors and four (14%) saw 6–10 doctors before receiving the correct diagnosis; 43% felt diagnosis was delayed. Four (13%) were dissatisfied with the way diagnosis was given, due to insensitive style of communication, inadequate information and psychological support. Psychosocial impact was moderate to high for 90% of families and the level of impact was not dependent on the level of health functioning of the child. Twenty-six (87%) wanted, but only 13(43%) received, information about peer-support groups. The 30 children accounted for 168 visits to general practitioners and 260 visits to specialist doctors; 21 (70%) children had at least one admission to hospital, including one who had 16 admissions in the previous 12 months. Most families (77%) received financial assistance but 52% believed this was insufficient. Families benefited from a specialised multi-disciplinary clinic but called for patient-held electronic medical records.ConclusionsAustralian families caring for children with genetic metabolic disorders are adversely impacted by delays in diagnosis, lack of easy access to peer support groups and lack of psychological support. Further research is needed to estimate economic impact and to analyse health service delivery models for children with rare diseases in Australia.

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support

Anderson

Elliott

Zurynski

2013

Orphanet J Rare Dis

220

263

View full text Add to dashboard Cite

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“…All patients had Royal Alexandra Hospital for Children Measure of Function (MOF) assessments before and at least every 3 months during treatment 10 . This measure is used to determine a patient's ability to function in their given environment (family, school and community) and is similar to the Child Global Assessment Scale 11 .…”

Section: Methodsmentioning

confidence: 99%

Use of risperidone in a paediatric population: An observational study

King

Zwi

Nunn

et al. 2003

J Paediatrics Child Health

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“…Multiprofessional case conferences and other discussions made up the remaining 6% of consultations. The full evaluation included questions on diagnosis, measures of functioning, 14 a family assessment measure 15 and a child behaviour checklist 16 . The results of these measures have been described in detail in a previous paper 13 …”

Section: Introductionmentioning

confidence: 99%

Child and Adolescent Telepsychiatry in New South Wales: Moving Beyond Clinical Consultation

Starling

Rosina

Nunn

et al. 2003

Australas Psychiatry

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Objectives: Telepsychiatry has been demonstrated to be an effective and acceptable way to deliver psychiatry services to remote and rural areas. This paper describes the initial evaluation of the Child and Adolescent Psychological Telemedicine Outreach Service (CAPTOS) in New South Wales and the changes made to the service after the initial evaluation. Methods: The evaluation investigated patients', rural clinicians' and CAPTOS psychiatrists' satisfaction with the quality of the service and the technology.Results: There were 136 rural families, 20 rural clinicians and eight psychiatrists. Overall, satisfaction was high with the rural families and clinicians being the most satisfied (95-99% very or mostly satisfied). CAPTOS psychiatrists felt that they were usually able to perform an adequate consultation (87%) but few (16%) felt the consultations were as satisfactory as a face to face consultation. Because of the initial evaluation, and the ongoing collaboration with rural clinicians, further services were developed using the technology and the developing professional networks. These initiatives included telenursing, professional skills development, sabbaticals for rural clinicians and a clinical skills workshop for rural clinicians. Conclusions:This study confirms telepsychiatry as a useful service for remote and rural children and families. The results also suggest some reasons why urban clinicians show the least enthusiasm for the service. Ways of addressing some of the limitations of the service are suggested, and the expansion of CAPTOS to meet the needs of rural clinicians is discussed.

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Measuring health outcome in paediatrics: Development of the RAHC measure of function

Abstract: The MOF is easy to use and provides a valuable description of health outcome that parents are able to understand. The MOF is moderately reliable, is likely to be sufficiently reliable to compare groups of paediatric patients and is responsive to change.

Cited by 22 publications

References 15 publications

Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support

Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support

Use of risperidone in a paediatric population: An observational study

Child and Adolescent Telepsychiatry in New South Wales: Moving Beyond Clinical Consultation

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