The aim of this study was to improve our understanding of depression and anxiety among older immi... more The aim of this study was to improve our understanding of depression and anxiety among older immigrant Chinese Australians. The study was based on the National Ageing Research Institute's Cultural Exchange Model, an iterative process of exchange between researchers and stakeholders. The project involved a range of components including consultations with health professionals and community workers about perceptions of depression and anxiety within the Chinese community. This paper reports on these consultation findings. Thematic analysis generated five main categories to explain participants' perceptions of depression and anxiety within the Chinese community. Themes included: lack of knowledge; personal weakness rather than illness; stigma; somatisation; and experience of migration in later life. Responses to questions about education and information dissemination were collated separately and reported. Views of depression and anxiety among older Chinese people suggest that edu...
ABSTRACT The advent of predictive HD gene testing has raised many unique issues, including the co... more ABSTRACT The advent of predictive HD gene testing has raised many unique issues, including the confidentiality of genetic information and the potential for social stigmatization and discrimination. There are also philosophical challenges regarding identity, responsibility, and what it means to live with genetic information that predicts future health status. Some choose not to have predictive testing due to these issues. We examined, as part of RESPOND-HD, the experiences of Australian individuals with a family history of HD and/or who tested for the HD gene in order to evaluate the related social, ethical, and legal issues. Fifty-four participants so far have completed the RESPOND-HD survey at our Site 144. Information was gathered concerning each participant's background, history, experiences and decision making about genetic testing, family history relating to HD, knowledge of advantages and disadvantages of genetic testing and opinions on testing, and experiences of adverse and unfair treatment. Knowledge about existing laws and policies surrounding genetic discrimination and its use was also gathered. The subscales included questions relating to behavioral, decision-making, and coping style, life experiences, and spiritual, physical, and emotional wellbeing. There was a wide age range of respondents (M = 46 years, SD = 12), with 35% male and 65% female participants. All had genetic testing (59% gene-positive, 41% gene-negative). Ninety-eight percent of participants stated that knowing test results was positive and 72% reported ‘great benefit’ in knowing test results. Many respondents experienced adverse events and felt that they had been treated unfairly. Thirty percent reported specific incidents of genetic discrimination, with complaints in the insurance arena the most common (18%). Problems with employment, superannuation, and blood donation were also reported. Additionally, there is inadequate knowledge about the existing related laws and policies. Overall, this study revealed significant risk of discrimination to the Australian HD community. Detailed results are being analyzed for presentation.
We secured a grant from the Legal Services Board of Victoria to fund a follow-on project from RES... more We secured a grant from the Legal Services Board of Victoria to fund a follow-on project from RESPOND-HD to analyze and explore the Australian experience of genetic discrimination (GD), using HD as a case model. The objectives are 1) improving knowledge of laws related to GD, 2) improved legal services, and 3) development of easily accessible resources (brochure, website) informing consumers of their rights.Of 60 participants (65% female; 35% male; 60% HD gene positive; 40% gene negative), aged between 20 and 69 years, 32% reported experiencing GD, with mean number of incidences 3.17 (±3.35). Participants experienced discrimination in employment, social, and insurance domains. For example, 17% of respondents had been refused insurance coverage, 20% offered coverage only at a higher premium, 55% told because of family history they could get only limited coverage, and 36% told that due to test results they could get only limited coverage.Action—getting involved in activitiesInaction—do nothing, react with positivity, feel surprised by discriminationInvolvement—information provision, research involvementAdvice—regarding event or potential for eventAdvocacy—to reduce stereotyping, providing educationVictoria's anti-discrimination laws are contained in the Equal Opportunity Act 1995, Disability Discrimination Act 1992, and Human Rights and Equal Opportunity Commission Act 1986. Regarding GD, 17% of participants knew where to make a complaint; 27% knew of laws preventing employers from unfairly using genetic information; 15% knew of laws preventing health insurance companies from accessing or requiring genetic information about an insured person; and 10% knew of laws preventing these companies from using genetic information to deny insurance. We aim to increase these percentages. We are funded to hold focus groups to discuss results and clarify issues with several cohorts (gene-negative participants, gene-positive participants, family members, case workers, health professionals, and researchers), and also for a public launch of the above-mentioned resources.
Depression and anxiety are two common mental health problems among older people. There is evidenc... more Depression and anxiety are two common mental health problems among older people. There is evidence that using well-validated screening tools can improve detection of depression and anxiety among this group. The review explored the use of the Geriatric Depression Scale (GDS) and the Geriatric Anxiety Inventory (GAI) for screening depression and anxiety among older Chinese immigrants, one of the largest and fastest growing groups of older immigrants in Western society. It focused on the GDS and GAI because both are designed specifically for older people. Online literature searches were conducted in MEDLINE, CINAHL, and PsycINFO. A narrative approach was used to review included papers. A total of 21 articles were included. There were limited data on anxiety among older Chinese immigrants, with only one unpublished report identified. There were 13 studies (20 articles) using the GDS with this group. Results of these studies indicated that the GDS is a reliable tool in this population; however, there was limited validity data. Two versions of the GDS-15 have been used with older Chinese immigrants, including the standard GDS-15 and Mui's GDS-15. Prevalence of depression ranged between 20% and 30% in most reviewed studies. Results of this review have practical implications for clinicians in their use of these tools with older Chinese immigrants in Western countries, such as the different GDS versions. It also suggests a number of directions for future research, such as the inclusion of clinical samples and consideration of the diversity within this group.
Psychogeriatrics : the official journal of the Japanese Psychogeriatric Society, Jan 3, 2015
This study contributes further research into the assessment and treatment of older psychiatric pa... more This study contributes further research into the assessment and treatment of older psychiatric patients with medical comorbidities. A retrospective file audit was conducted at the acute inpatient psychogeriatric unit of St Vincent's Aged Mental Health Service, Melbourne, in order to determine the prevalence of certain medical comorbidities and the nature of medical interventions provided for psychogeriatric inpatients. This study, investigating 165 admissions into an acute inpatient psychogeriatric unit, highlights that psychiatric and medical comorbidities are routine in this population: the vast majority (91.5%) of all inpatients had at least one medical comorbidity. As the population ages, psychogeriatric wards are likely to see more of the oldest-olds, who are likely to have comorbid medical illnesses. Currently, appropriate detection, investigation, and management of these illnesses are often suboptimal and can affect quality of life, increase mortality, and complicate trea...
European journal of human genetics : EJHG, Jan 4, 2015
The Diagnostic and Statistical Manual for Mental Disorders, Fifth Edition (DSM-5), recommends the... more The Diagnostic and Statistical Manual for Mental Disorders, Fifth Edition (DSM-5), recommends the World Health Organization Disability Assessment Schedule (WHODAS) 2.0 for routine clinical use. We tested the utility of the 12-item WHODAS 2.0 in prodromal Huntington disease. Using data from 726 participants and 630 companions over a 3-year follow-up, linear mixed models were fitted to test (1) baseline and longitudinal differences by progression group; (2) participant and companion differences within each group; and (3) sensitivity of the 12-item WHODAS in comparison to the 36-item WHODAS and the Total Functional Capacity (TFC) score from the Unified Huntington's Disease Rating Scale. Participants showed baseline group differences whereas companions showed baseline and longitudinal group differences. Companions reported worse functional decline over time than participants as the disease progresses. The 12-item WHODAS detected longitudinal change better than the 36-item WHODAS and...
Knowledge about some of the rarer causes of dementia is now quite advanced (Lautenschlager and Ma... more Knowledge about some of the rarer causes of dementia is now quite advanced (Lautenschlager and Martins, 2005), which can in turn inform other more common causes of dementia. Such is the case with the monogenic disorder of Huntington's disease (HD) ...
The World Health Organization (WHO) specifies that attention to the spiritual needs of the elderl... more The World Health Organization (WHO) specifies that attention to the spiritual needs of the elderly with mental health problems is essential to good patient care, yet little evidence-based practice is documented in this field. This paper reviews the literature on the provision of pastoral ...
The past decade has witnessed an explosion of evidence suggesting that many neurodegenerative dis... more The past decade has witnessed an explosion of evidence suggesting that many neurodegenerative diseases can be detected years, if not decades, earlier than previously thought. To date, these scientific advances have not provoked any parallel translational or clinical improvements. There is an urgency to capitalize on this momentum so earlier detection of disease can be more readily translated into improved health-related quality of life for families at risk for, or suffering with, neurodegenerative diseases. In this review, we discuss health-related quality of life (HRQOL) measurement in neurodegenerative diseases and the importance of these "patient reported outcomes" for all clinical research. Next, we address HRQOL following early identification or predictive genetic testing in some neurodegenerative diseases: Huntington disease, Alzheimer's disease, Parkinson's disease, Dementia with Lewy bodies, frontotemporal dementia, amyotrophic lateral sclerosis, prion diseases, hereditary ataxias, Dentatorubral-pallidoluysian atrophy and Wilson's disease. After a brief report of available direct-to-consumer genetic tests, we address the juxtaposition of earlier disease identification with assumed reluctance toward predictive genetic testing. Forty-one studies examining health-related outcomes following predictive genetic testing for neurodegenerative disease suggested that (a) extreme or catastrophic outcomes are rare; (b) consequences commonly include transiently increased anxiety and/or depression; (c) most participants report no regret; (d) many persons report extensive benefits to receiving genetic information; and (e) stigmatization and discrimination for genetic diseases are poorly understood and policy and laws are needed. Caution is appropriate for earlier identification of neurodegenerative diseases but findings suggest further progress is safe, feasible and likely to advance clinical care.
Huntington disease (HD) is a neurodegenerative disorder that involves preferential atrophy in the... more Huntington disease (HD) is a neurodegenerative disorder that involves preferential atrophy in the striatal complex and related subcortical nuclei. In this article, which is based on a dataset extracted from the PREDICT-HD study, we use statistical shape analysis with deformation markers obtained through "Large Deformation Diffeomorphic Metric…
The aim of this study was to improve our understanding of depression and anxiety among older immi... more The aim of this study was to improve our understanding of depression and anxiety among older immigrant Chinese Australians. The study was based on the National Ageing Research Institute's Cultural Exchange Model, an iterative process of exchange between researchers and stakeholders. The project involved a range of components including consultations with health professionals and community workers about perceptions of depression and anxiety within the Chinese community. This paper reports on these consultation findings. Thematic analysis generated five main categories to explain participants' perceptions of depression and anxiety within the Chinese community. Themes included: lack of knowledge; personal weakness rather than illness; stigma; somatisation; and experience of migration in later life. Responses to questions about education and information dissemination were collated separately and reported. Views of depression and anxiety among older Chinese people suggest that edu...
ABSTRACT The advent of predictive HD gene testing has raised many unique issues, including the co... more ABSTRACT The advent of predictive HD gene testing has raised many unique issues, including the confidentiality of genetic information and the potential for social stigmatization and discrimination. There are also philosophical challenges regarding identity, responsibility, and what it means to live with genetic information that predicts future health status. Some choose not to have predictive testing due to these issues. We examined, as part of RESPOND-HD, the experiences of Australian individuals with a family history of HD and/or who tested for the HD gene in order to evaluate the related social, ethical, and legal issues. Fifty-four participants so far have completed the RESPOND-HD survey at our Site 144. Information was gathered concerning each participant's background, history, experiences and decision making about genetic testing, family history relating to HD, knowledge of advantages and disadvantages of genetic testing and opinions on testing, and experiences of adverse and unfair treatment. Knowledge about existing laws and policies surrounding genetic discrimination and its use was also gathered. The subscales included questions relating to behavioral, decision-making, and coping style, life experiences, and spiritual, physical, and emotional wellbeing. There was a wide age range of respondents (M = 46 years, SD = 12), with 35% male and 65% female participants. All had genetic testing (59% gene-positive, 41% gene-negative). Ninety-eight percent of participants stated that knowing test results was positive and 72% reported ‘great benefit’ in knowing test results. Many respondents experienced adverse events and felt that they had been treated unfairly. Thirty percent reported specific incidents of genetic discrimination, with complaints in the insurance arena the most common (18%). Problems with employment, superannuation, and blood donation were also reported. Additionally, there is inadequate knowledge about the existing related laws and policies. Overall, this study revealed significant risk of discrimination to the Australian HD community. Detailed results are being analyzed for presentation.
We secured a grant from the Legal Services Board of Victoria to fund a follow-on project from RES... more We secured a grant from the Legal Services Board of Victoria to fund a follow-on project from RESPOND-HD to analyze and explore the Australian experience of genetic discrimination (GD), using HD as a case model. The objectives are 1) improving knowledge of laws related to GD, 2) improved legal services, and 3) development of easily accessible resources (brochure, website) informing consumers of their rights.Of 60 participants (65% female; 35% male; 60% HD gene positive; 40% gene negative), aged between 20 and 69 years, 32% reported experiencing GD, with mean number of incidences 3.17 (±3.35). Participants experienced discrimination in employment, social, and insurance domains. For example, 17% of respondents had been refused insurance coverage, 20% offered coverage only at a higher premium, 55% told because of family history they could get only limited coverage, and 36% told that due to test results they could get only limited coverage.Action—getting involved in activitiesInaction—do nothing, react with positivity, feel surprised by discriminationInvolvement—information provision, research involvementAdvice—regarding event or potential for eventAdvocacy—to reduce stereotyping, providing educationVictoria's anti-discrimination laws are contained in the Equal Opportunity Act 1995, Disability Discrimination Act 1992, and Human Rights and Equal Opportunity Commission Act 1986. Regarding GD, 17% of participants knew where to make a complaint; 27% knew of laws preventing employers from unfairly using genetic information; 15% knew of laws preventing health insurance companies from accessing or requiring genetic information about an insured person; and 10% knew of laws preventing these companies from using genetic information to deny insurance. We aim to increase these percentages. We are funded to hold focus groups to discuss results and clarify issues with several cohorts (gene-negative participants, gene-positive participants, family members, case workers, health professionals, and researchers), and also for a public launch of the above-mentioned resources.
Depression and anxiety are two common mental health problems among older people. There is evidenc... more Depression and anxiety are two common mental health problems among older people. There is evidence that using well-validated screening tools can improve detection of depression and anxiety among this group. The review explored the use of the Geriatric Depression Scale (GDS) and the Geriatric Anxiety Inventory (GAI) for screening depression and anxiety among older Chinese immigrants, one of the largest and fastest growing groups of older immigrants in Western society. It focused on the GDS and GAI because both are designed specifically for older people. Online literature searches were conducted in MEDLINE, CINAHL, and PsycINFO. A narrative approach was used to review included papers. A total of 21 articles were included. There were limited data on anxiety among older Chinese immigrants, with only one unpublished report identified. There were 13 studies (20 articles) using the GDS with this group. Results of these studies indicated that the GDS is a reliable tool in this population; however, there was limited validity data. Two versions of the GDS-15 have been used with older Chinese immigrants, including the standard GDS-15 and Mui's GDS-15. Prevalence of depression ranged between 20% and 30% in most reviewed studies. Results of this review have practical implications for clinicians in their use of these tools with older Chinese immigrants in Western countries, such as the different GDS versions. It also suggests a number of directions for future research, such as the inclusion of clinical samples and consideration of the diversity within this group.
Psychogeriatrics : the official journal of the Japanese Psychogeriatric Society, Jan 3, 2015
This study contributes further research into the assessment and treatment of older psychiatric pa... more This study contributes further research into the assessment and treatment of older psychiatric patients with medical comorbidities. A retrospective file audit was conducted at the acute inpatient psychogeriatric unit of St Vincent's Aged Mental Health Service, Melbourne, in order to determine the prevalence of certain medical comorbidities and the nature of medical interventions provided for psychogeriatric inpatients. This study, investigating 165 admissions into an acute inpatient psychogeriatric unit, highlights that psychiatric and medical comorbidities are routine in this population: the vast majority (91.5%) of all inpatients had at least one medical comorbidity. As the population ages, psychogeriatric wards are likely to see more of the oldest-olds, who are likely to have comorbid medical illnesses. Currently, appropriate detection, investigation, and management of these illnesses are often suboptimal and can affect quality of life, increase mortality, and complicate trea...
European journal of human genetics : EJHG, Jan 4, 2015
The Diagnostic and Statistical Manual for Mental Disorders, Fifth Edition (DSM-5), recommends the... more The Diagnostic and Statistical Manual for Mental Disorders, Fifth Edition (DSM-5), recommends the World Health Organization Disability Assessment Schedule (WHODAS) 2.0 for routine clinical use. We tested the utility of the 12-item WHODAS 2.0 in prodromal Huntington disease. Using data from 726 participants and 630 companions over a 3-year follow-up, linear mixed models were fitted to test (1) baseline and longitudinal differences by progression group; (2) participant and companion differences within each group; and (3) sensitivity of the 12-item WHODAS in comparison to the 36-item WHODAS and the Total Functional Capacity (TFC) score from the Unified Huntington's Disease Rating Scale. Participants showed baseline group differences whereas companions showed baseline and longitudinal group differences. Companions reported worse functional decline over time than participants as the disease progresses. The 12-item WHODAS detected longitudinal change better than the 36-item WHODAS and...
Knowledge about some of the rarer causes of dementia is now quite advanced (Lautenschlager and Ma... more Knowledge about some of the rarer causes of dementia is now quite advanced (Lautenschlager and Martins, 2005), which can in turn inform other more common causes of dementia. Such is the case with the monogenic disorder of Huntington's disease (HD) ...
The World Health Organization (WHO) specifies that attention to the spiritual needs of the elderl... more The World Health Organization (WHO) specifies that attention to the spiritual needs of the elderly with mental health problems is essential to good patient care, yet little evidence-based practice is documented in this field. This paper reviews the literature on the provision of pastoral ...
The past decade has witnessed an explosion of evidence suggesting that many neurodegenerative dis... more The past decade has witnessed an explosion of evidence suggesting that many neurodegenerative diseases can be detected years, if not decades, earlier than previously thought. To date, these scientific advances have not provoked any parallel translational or clinical improvements. There is an urgency to capitalize on this momentum so earlier detection of disease can be more readily translated into improved health-related quality of life for families at risk for, or suffering with, neurodegenerative diseases. In this review, we discuss health-related quality of life (HRQOL) measurement in neurodegenerative diseases and the importance of these "patient reported outcomes" for all clinical research. Next, we address HRQOL following early identification or predictive genetic testing in some neurodegenerative diseases: Huntington disease, Alzheimer's disease, Parkinson's disease, Dementia with Lewy bodies, frontotemporal dementia, amyotrophic lateral sclerosis, prion diseases, hereditary ataxias, Dentatorubral-pallidoluysian atrophy and Wilson's disease. After a brief report of available direct-to-consumer genetic tests, we address the juxtaposition of earlier disease identification with assumed reluctance toward predictive genetic testing. Forty-one studies examining health-related outcomes following predictive genetic testing for neurodegenerative disease suggested that (a) extreme or catastrophic outcomes are rare; (b) consequences commonly include transiently increased anxiety and/or depression; (c) most participants report no regret; (d) many persons report extensive benefits to receiving genetic information; and (e) stigmatization and discrimination for genetic diseases are poorly understood and policy and laws are needed. Caution is appropriate for earlier identification of neurodegenerative diseases but findings suggest further progress is safe, feasible and likely to advance clinical care.
Huntington disease (HD) is a neurodegenerative disorder that involves preferential atrophy in the... more Huntington disease (HD) is a neurodegenerative disorder that involves preferential atrophy in the striatal complex and related subcortical nuclei. In this article, which is based on a dataset extracted from the PREDICT-HD study, we use statistical shape analysis with deformation markers obtained through "Large Deformation Diffeomorphic Metric…
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Papers by Anita Goh