29 results on '"Zilliacus E"'
Search Results
2. Diagnostic Yield of Panel Genetic Testing in a Cohort of >200 Patients With Congenital Heart Disease
- Author
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Zilliacus, E., primary, Hathaway, J., additional, Cicerchia, M., additional, Tommiska, J., additional, Ahonen, S., additional, Seppälä, E., additional, Gall, K., additional, Scocchia, A., additional, Saarinen, I., additional, Rantanen, M., additional, Schleit, J., additional, Kangas-Kontio, T., additional, Gentile, M., additional, Salmenperä, P., additional, Paananen, J., additional, Myllykangas, S., additional, and Koskenvuo, J., additional
- Published
- 2022
- Full Text
- View/download PDF
3. Are we being overly cautious? A qualitative inquiry into the experiences and perceptions of treatment-focused germline BRCA genetic testing amongst women recently diagnosed with breast cancer
- Author
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Zilliacus, E., Meiser, B., Gleeson, M., Watts, K., Tucker, K., Lobb, E. A., and Mitchell, G.
- Published
- 2012
- Full Text
- View/download PDF
4. Postmortem Genetic Testing Following Sudden Cardiac Death Using a Cardiomyopathy and Arrhythmia Next-Generation Sequencing Panel.
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Zilliacus, E., Hathaway, J., Huusko, J., Cicerchia, M., Ahonen, S., Tommiska, J., Gall, K., Sluyters, A., Lewis, A., Liaquat, K., Partack, E., Howell, V., Dodge, W., Djupsjöbacka, J., Muona, M., Saarinen, I., Seppälä, E., Kangas-Kontio, T., Koskinen, L., and Salmenperä, P.
- Subjects
- *
CARDIAC arrest , *GENETIC testing , *NUCLEOTIDE sequencing , *ARRHYTHMIA , *CARDIOMYOPATHIES - Published
- 2024
- Full Text
- View/download PDF
5. Evaluation of an online communication skills training programme for oncology nurses working with patients from minority backgrounds
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Kaur, R, Meiser, B, Zilliacus, E, Tim Wong, WK, Woodland, L, Watts, K, Tomkins, S, Kissane, D, Girgis, A, Butow, P, Hale, S, Perry, A, Aranda, SK, Shaw, T, Tebble, H, Norris, C, Goldstein, D, Kaur, R, Meiser, B, Zilliacus, E, Tim Wong, WK, Woodland, L, Watts, K, Tomkins, S, Kissane, D, Girgis, A, Butow, P, Hale, S, Perry, A, Aranda, SK, Shaw, T, Tebble, H, Norris, C, and Goldstein, D
- Abstract
Objective: This study aimed to develop and assess the feasibility of an online communication skills training intervention to increase cultural competence amongst oncology nurses working with individuals from minority backgrounds. Methods: The intervention provided examples of communication strategies using vignette-based, professionally produced videos, developed through an iterative process with input from a large multidisciplinary team. Fifty-three oncology nurses completed all three questionnaires at baseline, within 2 weeks and then 3 months after accessing the programme. Results: The online intervention was well received by the majority of participants, and was endorsed as clearly presented, informative, relevant and useful by more than 90% of participants. Eighty-seven percent of participants reported increased confidence in communicating with patients via an interpreter, and 93% agreed that skills they gained would be useful in providing better patient care. Participants reported significant improvements in practice while interacting with people with limited English proficiency 2 weeks and 3 months after accessing the website (X 2 = 13.66, P < 0.001). Conclusion: This online communication training programme can now be tested for its utility in improving patient care for oncology nurses working with patients from minority backgrounds.
- Published
- 2019
6. Evaluation of an online communication skills training programme for oncology nurses working with patients from minority backgrounds.
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Shaw T., Woodland L., Watts K., Tomkins S., Girgis A., Butow P., Hale S., Perry A., Aranda S.K., Goldstein D., Kissane D., Norris C., Tebble H., Kaur R., Meiser B., Zilliacus E., Tim Wong W.K., Shaw T., Woodland L., Watts K., Tomkins S., Girgis A., Butow P., Hale S., Perry A., Aranda S.K., Goldstein D., Kissane D., Norris C., Tebble H., Kaur R., Meiser B., Zilliacus E., and Tim Wong W.K.
- Abstract
Objective: This study aimed to develop and assess the feasibility of an online communication skills training intervention to increase cultural competence amongst oncology nurses working with individuals from minority backgrounds. Method(s): The intervention provided examples of communication strategies using vignette-based, professionally produced videos, developed through an iterative process with input from a large multidisciplinary team. Fifty-three oncology nurses completed all three questionnaires at baseline, within 2 weeks and then 3 months after accessing the programme. Result(s): The online intervention was well received by the majority of participants, and was endorsed as clearly presented, informative, relevant and useful by more than 90% of participants. Eighty-seven percent of participants reported increased confidence in communicating with patients via an interpreter, and 93% agreed that skills they gained would be useful in providing better patient care. Participants reported significant improvements in practice while interacting with people with limited English proficiency 2 weeks and 3 months after accessing the website (X2 = 13.66, P < 0.001). Conclusion(s): This online communication training programme can now be tested for its utility in improving patient care for oncology nurses working with patients from minority backgrounds.Copyright © 2018, Springer-Verlag GmbH Germany, part of Springer Nature.
- Published
- 2018
7. Perspectives of oncology nurses and oncologists regarding barriers to working with patients from a minority background: Systemic issues and working with interpreters.
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Hale S., Watts K.J., Meiser B., Zilliacus E., Kaur R., Taouk M., Girgis A., Butow P., Kissane D.W., Perry A., Goldstein D., Aranda S.K., Hale S., Watts K.J., Meiser B., Zilliacus E., Kaur R., Taouk M., Girgis A., Butow P., Kissane D.W., Perry A., Goldstein D., and Aranda S.K.
- Abstract
This study aimed to ascertain the systemic barriers encountered by oncology health professionals (HPs) working with patients from ethnic minorities to guide the development of a communication skills training programme. Twelve medical and five radiation oncologists and 21 oncology nurses were invited to participate in this qualitative study. Participants were interviewed individually or in a focus group about their experiences working with people from minority backgrounds. All interviews were transcribed verbatim and analysed thematically. HPs encountered language and communication barriers in their interactions with patients and their families, which were perceived to impact negatively on the quality and amount of information and support provided. There was a shortage of, and poor processes for engaging, interpreters and some HPs were concerned about the accuracy of interpretation. HPs expressed a need for training in cultural awareness and communication skills with a preference for face-to-face delivery. A lack of funding, a culture of "learning on the job", and time constraints were systemic barriers to training. Oncologists and oncology nurses encounter complex challenges in clinical interactions with minority patients and their families, including difficulties working with interpreters. Formal training programmes targeted to the development of culturally competent communication skills are required.Copyright © 2017 John Wiley & Sons Ltd.
- Published
- 2018
8. Perspectives of oncology nurses and oncologists regarding barriers to working with patients from a minority background: Systemic issues and working with interpreters
- Author
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Watts, KJ, Meiser, B, Zilliacus, E, Kaur, R, Taouk, M, Girgis, A, Butow, P, Kissane, DW, Hale, S, Perry, A, Aranda, SK, Goldstein, D, Watts, KJ, Meiser, B, Zilliacus, E, Kaur, R, Taouk, M, Girgis, A, Butow, P, Kissane, DW, Hale, S, Perry, A, Aranda, SK, and Goldstein, D
- Abstract
This study aimed to ascertain the systemic barriers encountered by oncology health professionals (HPs) working with patients from ethnic minorities to guide the development of a communication skills training programme. Twelve medical and five radiation oncologists and 21 oncology nurses were invited to participate in this qualitative study. Participants were interviewed individually or in a focus group about their experiences working with people from minority backgrounds. All interviews were transcribed verbatim and analysed thematically. HPs encountered language and communication barriers in their interactions with patients and their families, which were perceived to impact negatively on the quality and amount of information and support provided. There was a shortage of, and poor processes for engaging, interpreters and some HPs were concerned about the accuracy of interpretation. HPs expressed a need for training in cultural awareness and communication skills with a preference for face-to-face delivery. A lack of funding, a culture of "learning on the job", and time constraints were systemic barriers to training. Oncologists and oncology nurses encounter complex challenges in clinical interactions with minority patients and their families, including difficulties working with interpreters. Formal training programmes targeted to the development of culturally competent communication skills are required.
- Published
- 2018
9. Perspectives of oncology nurses and oncologists regarding barriers to working with patients from a minority background: Systemic issues and working with interpreters
- Author
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Watts, K. J., primary, Meiser, B., additional, Zilliacus, E., additional, Kaur, R., additional, Taouk, M., additional, Girgis, A., additional, Butow, P., additional, Kissane, D. W., additional, Hale, S., additional, Perry, A., additional, Aranda, S. K., additional, and Goldstein, D., additional
- Published
- 2017
- Full Text
- View/download PDF
10. Perspectives of oncology nurses and oncologists regarding barriers to working with patients from a minority background: systemic issues and working with interpreters.
- Author
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Watts, KJ, Meiser, B, Zilliacus, E, Kaur, R, Taouk, M, Girgis, A, Butow, P, Kissane, D, Hale, S, Perry, A, Aranda, SK, Goldstein, D, Watts, KJ, Meiser, B, Zilliacus, E, Kaur, R, Taouk, M, Girgis, A, Butow, P, Kissane, D, Hale, S, Perry, A, Aranda, SK, and Goldstein, D
- Published
- 2017
11. Communicating with patients from minority backgrounds: Individual challenges experienced by oncology health professionals
- Author
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Watts, KJ, Meiser, B, Zilliacus, E, Kaur, R, Taouk, M, Girgis, A, Butow, P, Goldstein, D, Hale, S, Perry, A, Aranda, SK, Kissane, DW, Watts, KJ, Meiser, B, Zilliacus, E, Kaur, R, Taouk, M, Girgis, A, Butow, P, Goldstein, D, Hale, S, Perry, A, Aranda, SK, and Kissane, DW
- Abstract
Purpose Oncology health professionals (HPs) are increasingly required to care for patients from minority backgrounds. Yet many HPs have not had formal training in how to communicate effectively in culturally diverse settings. More information is needed about the challenges that oncology HPs face in communicating with minority patients to inform the content of formal training programs. This qualitative study aimed to identify oncology nurses’ and oncologists’ individual experiences and challenges in communicating with patients from minority backgrounds. Method Thirty-eight oncology HPs (21 oncology nurses, 12 medical oncologists, and 5 radiation oncologists) were interviewed individually or in focus groups about their experiences communicating with patients from minority backgrounds. The interviews were audio taped and analysed thematically. Results The majority of participants (82%) reported varying degrees of uncertainty and discomfort regarding working with minority patients, with many barriers to communication encountered. Participants perceived that minority patients received less emotional support than majority group patients. They experienced challenges in balancing beliefs about patient autonomy with cultural differences regarding the role of the family. Strategies employed by participants to facilitate interactions included: modifying speech, taking more time in consultations, rapport building, and using nonverbal techniques. Conclusions Oncology HPs encounter many linguistic and cultural barriers when communicating with minority patients. They need formal training tailored to developing culturally competent communication. Oncology nurses and oncologists could benefit from formal communication skills training focused upon cultural competence during their career development programs.
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- 2017
12. Communicating with patients from minority backgrounds: Individual challenges experienced by oncology health professionals.
- Author
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Hale S., Goldstein D., Perry A., Kissane D.W., Aranda S.K., Watts K.J., Meiser B., Zilliacus E., Kaur R., Taouk M., Girgis A., Butow P., Hale S., Goldstein D., Perry A., Kissane D.W., Aranda S.K., Watts K.J., Meiser B., Zilliacus E., Kaur R., Taouk M., Girgis A., and Butow P.
- Abstract
PURPOSE: Oncology health professionals (HPs) are increasingly required to care for patients from minority backgrounds. Yet many HPs have not had formal training in how to communicate effectively in culturally diverse settings. More information is needed about the challenges that oncology HPs face in communicating with minority patients to inform the content of formal training programs. This qualitative study aimed to identify oncology nurses' and oncologists' individual experiences and challenges in communicating with patients from minority backgrounds. METHOD: Thirty-eight oncology HPs (21 oncology nurses, 12 medical oncologists, and 5 radiation oncologists) were interviewed individually or in focus groups about their experiences communicating with patients from minority backgrounds. The interviews were audio taped and analysed thematically. RESULTS: The majority of participants (82%) reported varying degrees of uncertainty and discomfort regarding working with minority patients, with many barriers to communication encountered. Participants perceived that minority patients received less emotional support than majority group patients. They experienced challenges in balancing beliefs about patient autonomy with cultural differences regarding the role of the family. Strategies employed by participants to facilitate interactions included: modifying speech, taking more time in consultations, rapport building, and using nonverbal techniques. CONCLUSIONS: Oncology HPs encounter many linguistic and cultural barriers when communicating with minority patients. They need formal training tailored to developing culturally competent communication. Oncology nurses and oncologists could benefit from formal communication skills training focused upon cultural competence during their career development programs.Copyright © 2016 Elsevier Ltd. All rights reserved.
- Published
- 2017
13. Evaluation of an online communication skills training programme foroncology health care professionalsworkingwith culturally and linguistically diverse patients.
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Tebble H., Meiser B., Goldstein D., Shaw T., Kaur R., Zilliacus E., Wong T., Woodland L., Tomkins S., Kissane D., Girgis A., Butow P., Hale S., Perry A., Aranda S.K., Tebble H., Meiser B., Goldstein D., Shaw T., Kaur R., Zilliacus E., Wong T., Woodland L., Tomkins S., Kissane D., Girgis A., Butow P., Hale S., Perry A., and Aranda S.K.
- Abstract
Background: No communication skills training (CST) resources specifically targeting cultural competency in oncology healthcare are currently available. This project aimed to develop an online interactive CST program and assess its feasibility and potential efficacy in improving perceived competence of oncology health professionals (HPs) in communicating with people with cancer from minority backgrounds. Method(s): An online CST program providing strategies exemplified in vignettes-based professionally produced videos was developed through an iterative process with input from a large multidisciplinary team. The CST program was tested with medical oncologists, radiation oncologists and oncology nurses. Participants were asked to complete self-report questionnaires at three time points-pre-CST program (baseline) and post-CST program, (a) 2 weeks after completion and (b) 3months later. Result(s): Fifty-four participants completed all three questionnaires and 53 of these were oncology nurses. Participants' evaluations of the programme were overwhelmingly positive. Ninety-six percent found the CST program was helpful in giving them an understanding of issues relating to working with patients from CALD backgrounds, and 83% stated that they have gained new skills in working with these patients. Ninety-one percent stated that they would recommend the program to their colleagues. Comparison of mean scores calculated from baseline (time period T1) to follow up surveys (time periods T2 and T3) showed that HPs increasingly felt that it was the relative responsibility of HPs and hospitals to adapt to needs of people from CALD backgrounds (mean scores T1 = 22.5 (SD: 3.7); T2 = 22.5 (SD: 3.2); T3 = 25.1 (SD: 2.5); P < 0.001). They perceived the program will bring positive change in their practise and their readiness to communicate in a culturally competent manner (mean scores T1 = 26.5 (SD: 2.1); T2 = 27.8 (SD: 1.5) T3 = 28 (SD: 1.6); P < 0.001). Conclusion(s): The programwas judge
- Published
- 2017
14. Perspectives of oncology nurses and oncologists regarding barriers to working with patients from a minority background: Systemic issues and working with interpreters.
- Author
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Watts, K. J., Meiser, B., Zilliacus, E., Kaur, R., Taouk, M., Girgis, A., Butow, P., Kissane, D. W., Hale, S., Perry, A., Aranda, S. K., and Goldstein, D.
- Subjects
ATTITUDE (Psychology) ,ONCOLOGY nursing ,COMMUNICATIVE competence ,ETHNIC groups ,FOCUS groups ,GROUNDED theory ,INTERPROFESSIONAL relations ,INTERVIEWING ,LANGUAGE & languages ,RESEARCH methodology ,MEDICAL personnel ,PATIENT-professional relations ,MINORITIES ,ONCOLOGISTS ,PERSONNEL management ,RESEARCH funding ,QUALITATIVE research ,HEALTH facility translating services ,THEMATIC analysis ,CULTURAL competence ,PATIENTS' families ,DATA analysis software ,DESCRIPTIVE statistics - Abstract
This study aimed to ascertain the systemic barriers encountered by oncology health professionals (HPs) working with patients from ethnic minorities to guide the development of a communication skills training programme. Twelve medical and five radiation oncologists and 21 oncology nurses were invited to participate in this qualitative study. Participants were interviewed individually or in a focus group about their experiences working with people from minority backgrounds. All interviews were transcribed verbatim and analysed thematically. HPs encountered language and communication barriers in their interactions with patients and their families, which were perceived to impact negatively on the quality and amount of information and support provided. There was a shortage of, and poor processes for engaging, interpreters and some HPs were concerned about the accuracy of interpretation. HPs expressed a need for training in cultural awareness and communication skills with a preference for face‐to‐face delivery. A lack of funding, a culture of “learning on the job”, and time constraints were systemic barriers to training. Oncologists and oncology nurses encounter complex challenges in clinical interactions with minority patients and their families, including difficulties working with interpreters. Formal training programmes targeted to the development of culturally competent communication skills are required. [ABSTRACT FROM AUTHOR]
- Published
- 2018
- Full Text
- View/download PDF
15. Communication skills training for oncology health care professionals working with culturally and linguistically diverse patients.
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Kaur R., Shaw T., Tebble H., Woodland L., Goldstein D., Meiser B., Zilliacus E., Wong T., Girgis A., Butow P., Hale S., Kissane D., Perry A., Aranda S., Tomkins S., Hodges J., Norris C., Kaur R., Shaw T., Tebble H., Woodland L., Goldstein D., Meiser B., Zilliacus E., Wong T., Girgis A., Butow P., Hale S., Kissane D., Perry A., Aranda S., Tomkins S., Hodges J., and Norris C.
- Abstract
Aim: Develop and evaluate a novel online training program designed to equip health professionals to communicate with cancer patients from diverse cultural and linguistic backgrounds (CALD). Method(s): In Phase I of the study, medical and radiation oncologists and oncology nurses working in a clinical setting were interviewed in depth to investigate the main issues that health professionals working in oncology face with their CALD patients, as well as the communication strategies used to improve treatment outcomes. Findings from Phase I were used to guide the development of the content of the online intervention in Phase II. The website will be pilot tested using a prospective design with three questionnaire-based assessments. Result(s): Phase I: 38 oncologists and oncology nurses were interviewed and interviews were subjected to a rigorous qualitative analysis. The majority of participants believed that the main barrier to communication with CALD patients was one of language rather than culture. Interpreters were considered a vital resource; however, their availability was reported as varying greatly across health services. All participants reported that there was a dearth of available written resources, which reduced the quality of information being conveyed to CALD patients. The majority reported learning communication strategies from colleagues, or through their own experience, rather than formal training. Most participants felt that an online or workshop-based CST program focusing on the use of interpreters and cultural awareness in cancer care would be of value. Phase II: Program content development is now complete, and video production depicting model behaviours used with three key case-studies was completed in March 2015. Data collection for program evaluation will commence shortly, and evaluation data will be presented. Conclusion(s): Oncology health professionals reported several barriers to effective communication with CALD patients. All identified a need
- Published
- 2015
16. Perceptions of melanoma risk among Australian adolescents: Barriers to sun protection and recommendations for improvement
- Author
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Kasparian, NA, McLoone, JK, Meiser, B, Karatas, J, Chau, J, Zilliacus, E, Kasparian, NA, McLoone, JK, Meiser, B, Karatas, J, Chau, J, and Zilliacus, E
- Published
- 2014
17. Supporting patients with low health literacy: what role do radiation therapists play?
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Smith, S., Zhu, Y., Dhillon, H., Milross, C., Taylor, J., Halkett, Georgia, Zilliacus, E., Smith, S., Zhu, Y., Dhillon, H., Milross, C., Taylor, J., Halkett, Georgia, and Zilliacus, E.
- Abstract
Purpose: Health literacy plays a key role in a patient’s ability to use health information and services, and can affect health outcomes. This study aimed to explore radiation therapists’ perspectives on how they support people with lower health literacy who are undergoing radiotherapy. Methods: Semi-structured interviews were conducted with 25 radiation therapists working in radiation oncology departments in New South Wales, Australia. Results: The four key themes were (1) the process of identifying a patient with low health literacy, (2) the perceived consequences of low health literacy, (3) managing and responding to the needs of different health literacy groups and (4) recommendations to address low health literacy in radiotherapy. Radiation therapists appeared to make an informal, intuitive judgment about a patient’s health literacy, using a variety of verbal and non-verbal cues as well as impromptu conversations with the multi-disciplinary team. Patients perceived to have lower health literacy were described as having greater difficulties assimilating knowledge and engaging in self-care. Although participants reported communicating to patients at a basic level initially, they subsequently tailored their communication to match a patient’s health literacy. Strategies reported to communicate to low health literacy groups ranged from using lay language with minimal medical terminology, using visual aids (photos), using analogies, reiterating information and asking family members with higher literacy to attend consultations. Conclusion: A more structured approach to supporting patients with low health literacy and integrating health literacy training in radiation oncology departments may help to minimise the adverse outcomes typically experienced by this population.
- Published
- 2013
18. Are we being overly cautious? A qualitative inquiry into the experiences and perceptions of treatment-focused germline BRCA genetic testing for women recently diagnosed with breast cancer
- Author
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Zilliacus, E, Meiser, B, Gleeson, M, Watts, KJ, Tucker, K, Lobb, EA, Mitchell, G, Zilliacus, E, Meiser, B, Gleeson, M, Watts, KJ, Tucker, K, Lobb, EA, and Mitchell, G
- Abstract
Purpose: Women with breast cancer, who are found to be BRCA1/2 mutation carriers, have a high risk of ovarian cancer and metachronous breast cancer. Treatment-focused genetic testing (TFGT), offered around the time of diagnosis, allows genetic test results to inform surgical treatment decisions. However, concern has been raised that offering TFGT at this time may overly increase psychological burden. This study aimed to qualitatively explore women’s attitudes and experiences of TFGT. Methods: Women who had been diagnosed with breast cancer at age 50 years or less, undertook a semi-structured telephone interview (n=26). The sample included women who had been offered TFGT, based on family history and/or other risk criteria (n=14), and women who had been diagnosed within the past 6-12 months, and had not been offered TFGT (n=12). Interviews explored women’s attitudes towards TFGT, perceived benefits and disadvantages, implications of TFGT, and impact on surgical decision-making. Interviews were transcribed verbatim and thematically analyzed. Results: Women expressed positive attitudes towards TFGT and felt it was highly relevant to their surgical decision-making. They did not feel that an offer of TFGT shortly after, or at the time of diagnosis, added undue psychological burden. The majority of women interviewed felt that TFGT should be incorporated into standard clinical care.Conclusions: TFGT is viewed favourably by women newly diagnosed with breast cancer who perceive the advantages of TFGT to outweigh the disadvantages. Future randomised controlled trials are needed to examine the long term impact of TFGT. We conclude that an offer of TFGT is not ‘too much, too soon’.
- Published
- 2012
19. How should we discuss genetic testing with women newly diagnosed with breast cancer? Design and implementation of a randomized controlled trial of two models of delivering education about treatment-focused genetic testing to younger women newly diagnosed with breast cancer.
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Harris M., Watts K.J., Meiser B., Mitchell G., Kirk J., Saunders C., Peate M., Duffy J., Kelly P.J., Gleeson M., Barlow-Stewart K., Rahman B., Friedlander M., Tucker K., Antill Y., Gregory P., Lipton L., McKay L., Senior J., Lobb E.A., Crowe P., Matthews A., Neil G., Parasyn A., Thomson D., Zilliacus E., Andrews L., Gale J., Fox J., Hart S., Smythe C., White M., Creighton L., Crowe K., D'arcy J., Grieve S., Secomb E., Cicciarelli L., Henderson M., O'Brien J., Poliness C., Hattam A., Susman R., Ung O., Dickson R., Field M., Moore K., Bastick P., Inder S., Lynch J., Schwartz P., Zia R., Mak C., Snook K., Spillane A., Hopper J., Geelhoed L., Bowman M., Cheung D., Edirimanne S., Edwards E., Elder E., French J., Moon D., Harris M., Watts K.J., Meiser B., Mitchell G., Kirk J., Saunders C., Peate M., Duffy J., Kelly P.J., Gleeson M., Barlow-Stewart K., Rahman B., Friedlander M., Tucker K., Antill Y., Gregory P., Lipton L., McKay L., Senior J., Lobb E.A., Crowe P., Matthews A., Neil G., Parasyn A., Thomson D., Zilliacus E., Andrews L., Gale J., Fox J., Hart S., Smythe C., White M., Creighton L., Crowe K., D'arcy J., Grieve S., Secomb E., Cicciarelli L., Henderson M., O'Brien J., Poliness C., Hattam A., Susman R., Ung O., Dickson R., Field M., Moore K., Bastick P., Inder S., Lynch J., Schwartz P., Zia R., Mak C., Snook K., Spillane A., Hopper J., Geelhoed L., Bowman M., Cheung D., Edirimanne S., Edwards E., Elder E., French J., and Moon D.
- Abstract
Background: Germline BRCA1 and BRCA2 mutation testing offered shortly after a breast cancer diagnosis to inform women's treatment choices - treatment-focused genetic testing 'TFGT' - has entered clinical practice in specialist centers and is likely to be soon commonplace in acute breast cancer management, especially for younger women. Yet the optimal way to deliver information about TFGT to younger women newly diagnosed with breast cancer is not known, particularly for those who were not suspected of having a hereditary breast cancer syndrome prior to their cancer diagnosis. Also, little is known about the behavioral and psychosocial impact or cost effectiveness of educating patients about TFGT. This trial aims to examine the impact and efficiency of two models of educating younger women newly diagnosed with breast cancer about genetic testing in order to provide evidence for a safe and effective future clinical pathway for this service.Design/methods: In this non-inferiority randomized controlled trial, 140 women newly diagnosed with breast cancer (aged less than 50 years) are being recruited from nine cancer centers in Australia. Eligible women with either a significant family history of breast and/or ovarian cancer or with other high risk features suggestive of a mutation detection rate of > 10% are invited by their surgeon prior to mastectomy or radiotherapy. After completing the first questionnaire, participants are randomized to receive either: (a) an educational pamphlet about genetic testing (intervention) or (b) a genetic counseling appointment at a family cancer center (standard care). Each participant is offered genetic testing for germline BRCA mutations. Decision-related and psychosocial outcomes are assessed over 12 months and include decisional conflict (primary outcome);uptake of bilateral mastectomy and/or risk-reducing salpingo-oophorectomy; cancer-specific- and general distress; family involvement in decision making; and decision regret. A process
- Published
- 2012
20. Are we being overly cautious? A qualitative inquiry into the experiences and perceptions of treatment-focused germline BRCA genetic testing amongst women recently diagnosed with breast cancer
- Author
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Zilliacus, E, Meiser, B, Gleeson, M, Watts, K, Tucker, K, Lobb, EA, Mitchell, G, Zilliacus, E, Meiser, B, Gleeson, M, Watts, K, Tucker, K, Lobb, EA, and Mitchell, G
- Abstract
PURPOSE: Women with breast cancer, who are found to be BRCA1/2 mutation carriers, have a high risk of ovarian cancer and metachronous breast cancer. Treatment-focused genetic testing (TFGT), offered around the time of diagnosis, allows genetic test results to inform surgical treatment decisions. However, concern has been raised that offering TFGT at this time may overly increase psychological burden. This study aimed to qualitatively explore women's attitudes and experiences of TFGT. METHODS: Women who had been diagnosed with breast cancer at age 50 years or less undertook a semi-structured telephone interview (n = 26). The sample included women who had been offered TFGT, based on family history and/or other risk criteria (n = 14), and women who had been diagnosed within the past 6-12 months and had not been offered TFGT (n = 12). Interviews explored women's attitudes towards TFGT, perceived benefits and disadvantages, implications of TFGT and impact on surgical decision making. Interviews were transcribed verbatim and thematically analysed. RESULTS: Women expressed positive attitudes towards TFGT and felt it was highly relevant to their surgical decision making. They did not feel that an offer of TFGT shortly after, or at the time of diagnosis, added undue psychological burden. The majority of women interviewed felt that TFGT should be incorporated into standard clinical care. CONCLUSIONS: TFGT is viewed favourably by women newly diagnosed with breast cancer. Future randomized controlled trials are needed to examine the long-term impact of TFGT. We conclude that an offer of TFGT is not perceived as 'too much, too soon' by relevant patients.
- Published
- 2012
21. Women’s Experience of Telehealth Cancer Genetic Counseling
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Zilliacus, E., Meiser, B., Lobb, Elizabeth, Kirk, J., Warwick, L., Tucker, K., Zilliacus, E., Meiser, B., Lobb, Elizabeth, Kirk, J., Warwick, L., and Tucker, K.
- Abstract
Telegenetics offers an alternative model of delivering genetic counseling to rural and outreach areas; however there is a dearth of qualitative research into the patient’s experience. Twelve women who had received telemedicine genetic counseling for hereditary breast and/or ovarian cancer (HBOC) within the previous 12 months participated in a semi-structured telephone interview. The interview explored women’s experience with telegenetics, satisfaction, perceived advantages and disadvantages and quality of the interaction with their genetic professionals. Overall women were highly satisfied with telegenetics. Telegenetics offered them convenience and reduced travel and associated costs. The majority of women described feeling a high degree of social presence, or rapport, with the off-site genetic clinician. One woman with a recent cancer diagnosis, reported that telemedicine was unable to meet her needs for psychosocial support. This finding highlights the need to be mindful of the psychosocial support needs of women with a recent diagnosis being seen via telegenetics. Patients attending for HBOC genetic counseling are generally highly satisfied with the technology and the interaction. Care should be taken, however, with patients with more complex psychosocial needs.
- Published
- 2010
22. A balancing act -- telehealth cancer genetics and practitioners' experiences of a triadic consultation.
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Zilliacus E, Meiser B, Lobb E, Barlow-Stewart K, and Tucker K
- Abstract
Telehealth is increasingly used for outreach service in cancer genetic counseling; however what occurs during the consultation and the roles practitioners adopt is largely unknown. Fifteen practitioners participated in semistructured interviews that explored their roles within telehealth, compared to face-to-face consultations, and the relationship between practitioners during telehealth. As they were not physically present with the patient, most participants felt that telehealth altered the genetic clinician's role to one of a 'visiting specialist'. Genetic counselors described undertaking multiple roles during the telehealth process. Two models of interaction were observed. The medical model reduced the interaction to a dyadic consultation by having the genetic counselor off-screen and included minimal clinician meetings and supervision. The triadic co-facilitation model incorporated a high level of information exchange, counselor autonomy and included the counselor onscreen. The co-facilitation model offers a useful framework for telehealth genetic counselling, offering complementary roles between practitioners and efficient service delivery. [ABSTRACT FROM AUTHOR]
- Published
- 2009
- Full Text
- View/download PDF
23. Evaluation of an online communication skills training programme for oncology nurses working with patients from minority backgrounds.
- Author
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Kaur R, Meiser B, Zilliacus E, Tim Wong WK, Woodland L, Watts K, Tomkins S, Kissane D, Girgis A, Butow P, Hale S, Perry A, Aranda SK, Shaw T, Tebble H, Norris C, and Goldstein D
- Subjects
- Adult, Aged, Australia, Cultural Competency education, Female, Humans, Male, Middle Aged, Minority Groups, Nurse Clinicians education, Surveys and Questionnaires, Communication, Education, Nursing methods, Oncology Nursing education, Oncology Nursing methods
- Abstract
Objective: This study aimed to develop and assess the feasibility of an online communication skills training intervention to increase cultural competence amongst oncology nurses working with individuals from minority backgrounds., Methods: The intervention provided examples of communication strategies using vignette-based, professionally produced videos, developed through an iterative process with input from a large multidisciplinary team. Fifty-three oncology nurses completed all three questionnaires at baseline, within 2 weeks and then 3 months after accessing the programme., Results: The online intervention was well received by the majority of participants, and was endorsed as clearly presented, informative, relevant and useful by more than 90% of participants. Eighty-seven percent of participants reported increased confidence in communicating with patients via an interpreter, and 93% agreed that skills they gained would be useful in providing better patient care. Participants reported significant improvements in practice while interacting with people with limited English proficiency 2 weeks and 3 months after accessing the website (X
2 = 13.66, P < 0.001)., Conclusion: This online communication training programme can now be tested for its utility in improving patient care for oncology nurses working with patients from minority backgrounds.- Published
- 2019
- Full Text
- View/download PDF
24. Communicating with patients from minority backgrounds: Individual challenges experienced by oncology health professionals.
- Author
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Watts KJ, Meiser B, Zilliacus E, Kaur R, Taouk M, Girgis A, Butow P, Goldstein D, Hale S, Perry A, Aranda SK, and Kissane DW
- Subjects
- Adult, Female, Humans, Male, Middle Aged, Qualitative Research, Attitude of Health Personnel, Communication, Cultural Competency, Health Personnel psychology, Minority Groups psychology, Oncology Nursing methods
- Abstract
Purpose: Oncology health professionals (HPs) are increasingly required to care for patients from minority backgrounds. Yet many HPs have not had formal training in how to communicate effectively in culturally diverse settings. More information is needed about the challenges that oncology HPs face in communicating with minority patients to inform the content of formal training programs. This qualitative study aimed to identify oncology nurses' and oncologists' individual experiences and challenges in communicating with patients from minority backgrounds., Method: Thirty-eight oncology HPs (21 oncology nurses, 12 medical oncologists, and 5 radiation oncologists) were interviewed individually or in focus groups about their experiences communicating with patients from minority backgrounds. The interviews were audio taped and analysed thematically., Results: The majority of participants (82%) reported varying degrees of uncertainty and discomfort regarding working with minority patients, with many barriers to communication encountered. Participants perceived that minority patients received less emotional support than majority group patients. They experienced challenges in balancing beliefs about patient autonomy with cultural differences regarding the role of the family. Strategies employed by participants to facilitate interactions included: modifying speech, taking more time in consultations, rapport building, and using nonverbal techniques., Conclusions: Oncology HPs encounter many linguistic and cultural barriers when communicating with minority patients. They need formal training tailored to developing culturally competent communication. Oncology nurses and oncologists could benefit from formal communication skills training focused upon cultural competence during their career development programs., (Copyright © 2016 Elsevier Ltd. All rights reserved.)
- Published
- 2017
- Full Text
- View/download PDF
25. Perceptions of melanoma risk among Australian adolescents: barriers to sun protection and recommendations for improvement.
- Author
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McLoone JK, Meiser B, Karatas J, Sousa MS, Zilliacus E, and Kasparian NA
- Subjects
- Adolescent, Australia, Female, Humans, Male, Melanoma psychology, Protective Clothing statistics & numerical data, Risk Factors, Sunburn psychology, Sunscreening Agents therapeutic use, Surveys and Questionnaires, Adolescent Behavior psychology, Health Behavior, Health Knowledge, Attitudes, Practice, Melanoma prevention & control, Sunburn prevention & control
- Abstract
Objectives: To explore adolescents' perceptions of melanoma risk, sun protection intervention preferences and perceived barriers to sun protection recommendations., Methods: Semi-structured focus groups were held in school classes, stratified by location (coastal, inland) and sector (public, private); discussions were transcribed verbatim and data were analysed using NVivo8 software., Results: 100 students (mean age=14.4 years, SD=0.5; range=14-16 years) from six high schools participated. Students demonstrated a high level of sun protection knowledge and understanding of sun exposure as a primary risk factor for the development of melanoma. There was, however, an under-estimation of melanoma prevalence and mortality rates among youth, and poor understanding of the increased risk associated with sunburn during childhood/adolescence. Adolescents' preferences for intervention focused on first-person accounts of receiving a melanoma diagnosis, communicated by young melanoma survivors. Interventions modelled on youth marketing campaigns or utilising social media were rated poorly., Conclusions: Despite young Australians' adequate knowledge of melanoma and related health recommendations, poor adherence continues to place young people at risk. Study findings suggest that social media interventions developed to influence behaviour change, are not necessarily preferred by adolescents., (© 2014 Public Health Association of Australia.)
- Published
- 2014
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26. Supporting patients with low health literacy: what role do radiation therapists play?
- Author
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Smith SK, Zhu Y, Dhillon HM, Milross CG, Taylor J, Halkett G, and Zilliacus E
- Subjects
- Adult, Attitude of Health Personnel, Communication, Female, Humans, Interviews as Topic, Male, Middle Aged, New South Wales, Physician-Patient Relations, Radiation Oncology, Referral and Consultation, Young Adult, Health Literacy methods, Neoplasms psychology, Neoplasms radiotherapy, Patient Education as Topic methods, Physician's Role psychology, Physicians psychology
- Abstract
Purpose: Health literacy plays a key role in a patient's ability to use health information and services, and can affect health outcomes. This study aimed to explore radiation therapists' perspectives on how they support people with lower health literacy who are undergoing radiotherapy., Methods: Semi-structured interviews were conducted with 25 radiation therapists working in radiation oncology departments in New South Wales, Australia., Results: The four key themes were (1) the process of identifying a patient with low health literacy, (2) the perceived consequences of low health literacy, (3) managing and responding to the needs of different health literacy groups and (4) recommendations to address low health literacy in radiotherapy. Radiation therapists appeared to make an informal, intuitive judgment about a patient's health literacy, using a variety of verbal and non-verbal cues as well as impromptu conversations with the multi-disciplinary team. Patients perceived to have lower health literacy were described as having greater difficulties assimilating knowledge and engaging in self-care. Although participants reported communicating to patients at a basic level initially, they subsequently tailored their communication to match a patient's health literacy. Strategies reported to communicate to low health literacy groups ranged from using lay language with minimal medical terminology, using visual aids (photos), using analogies, reiterating information and asking family members with higher literacy to attend consultations., Conclusion: A more structured approach to supporting patients with low health literacy and integrating health literacy training in radiation oncology departments may help to minimise the adverse outcomes typically experienced by this population.
- Published
- 2013
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27. To know or not to know: an update of the literature on the psychological and behavioral impact of genetic testing for Alzheimer disease risk.
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Rahman B, Meiser B, Sachdev P, Barlow-Stewart K, Otlowski M, Zilliacus E, and Schofield P
- Subjects
- Alzheimer Disease psychology, Apolipoproteins E genetics, Humans, Risk Factors, Alzheimer Disease genetics, Genetic Predisposition to Disease, Genetic Testing
- Abstract
Alzheimer disease (AD) is a genetically heterogenous disorder; in rare cases autosomal dominantly inherited mutations typically cause early-onset familial AD (EOAD), whereas the risk for late-onset AD (LOAD) is generally modulated by genetic variants with relatively low penetrance but high prevalence, with variants in apolipoprotein E (APOE) being a firmly established risk factor. This article presents an overview of the current literature on the psychological and behavioral impact of genetic testing for AD. The few studies available for presymptomatic testing for EOAD showed that only a very small proportion of individuals had poor psychological outcomes as a result. Initial interest in testing for EOAD decreases significantly after identification of a specific mutation in a kindred, suggesting that interest and potential for knowledge may not translate into actual testing uptake. The majority of individuals from both the general population and those with a family history of AD had positive attitudes towards, and were interested in, susceptibility testing for APOE. Motivations for genetic testing included to provide information for future planning and to learn about one's own and one's children's risks of developing AD. Although susceptibility testing for APOE genotype is not currently recommended due to the lack of clinical utility, this review demonstrates that there is interest in testing and no obvious adverse psychological effects to those who have been tested.
- Published
- 2012
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28. Getting to the point: what women newly diagnosed with breast cancer want to know about treatment-focused genetic testing.
- Author
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Meiser B, Gleeson M, Watts K, Peate M, Zilliacus E, Barlow-Stewart K, Saunders C, Mitchell G, and Kirk J
- Subjects
- Adult, Breast Neoplasms diagnosis, Breast Neoplasms therapy, Female, Humans, Middle Aged, Pamphlets, Patient Satisfaction, Pilot Projects, Qualitative Research, Time Factors, Breast Neoplasms genetics, Genetic Testing, Patient Education as Topic, Patient Preference
- Abstract
Purpose/objectives: To identify young women's information preferences regarding treatment-focused genetic testing (TFGT) and to develop and evaluate a novel educational resource., Research Approach: Qualitative interview study and pilot testing of a novel resource., Setting: Two familial cancer services and one outpatient oncology clinic in Sydney and Melbourne, Australia., Participants: 26 women with breast cancer aged 50 years and younger who either previously had TFGT (n = 14) or had a diagnosis of breast cancer within the previous 6-12 months., Methodologic Approach: Participants were asked about their views of TFGT in semistructured interviews. A brief pamphlet on TFGT then was developed and pilot tested with 17 of the 26 women., Main Research Variables: Women's attitudes and preferences with regard to timing, mode of delivery, and amount and format of information regarding TFGT were explored., Findings: Most women wanted to be informed about TFGT at or around the time of their cancer diagnosis via a face-to-face consultation. No clear preference existed for which type of healthcare professional should provide information on TFGT. Brief written information about TFGT was viewed as important supporting material. The educational resource developed was well received., Conclusions: The potential for more widespread TFGT in the future indicates a need for patient educational materials that enable women to make informed choices about TFGT. This pilot study has provided timely initial evidence on the efficacy of a brief written resource in preparing women for decision making about TFGT., Interpretation: The resource developed in this study will assist oncology nurses to make important genetic risk information available to women newly diagnosed with breast cancer at a stressful time.
- Published
- 2012
- Full Text
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29. The virtual consultation: practitioners' experiences of genetic counseling by videoconferencing in Australia.
- Author
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Zilliacus E, Meiser B, Lobb E, Dudding TE, Barlow-Stewart K, and Tucker K
- Subjects
- Australia, Breast Neoplasms genetics, Female, Genetic Testing, Humans, Interviews as Topic, New South Wales, Telemedicine, Genetic Counseling methods, Practice Patterns, Physicians', User-Computer Interface, Videoconferencing
- Abstract
Objective: Videoconferencing for clinical genetics services, or telegenetics, is becoming an increasingly utilized method of delivering genetic counseling to rural areas; however, there has been little qualitative exploration of the practitioner's experience, particularly for hereditary breast/ovarian cancer counseling., Methods: Semistructured interviews were conducted with genetic practitioners (n=15) delivering telegenetics services in New South Wales, Australia. Interviews explored experiences, perceived aims of the service, satisfaction, and the advantages and disadvantages of the technology. Interviews were audiotaped, transcribed, and thematically analyzed., Results: All practitioners were highly satisfied with telegenetics. They perceived the advantages of videoconferencing as primarily increased efficiency and convenience for genetic clinicians, minimized travel for the patient, reduced costs, and increased access to rural areas. Disadvantages included the inhibition of rapport building between genetic clinician and patient and the difficulty in detecting nonverbal cues. Telegenetics was seen as a structured interaction that allowed less time for emotional exploration than a traditional face-to-face consultation. Technical disadvantages involved visual resolution, connection speed, and interruptions to voice transmission., Conclusion: Practitioners were satisfied with telegenetics and perceived the advantages as outweighing the disadvantages.
- Published
- 2010
- Full Text
- View/download PDF
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