* Address correspondence and reprint requests to: Michelle Peate, Postal address: Psycho-Oncology... more * Address correspondence and reprint requests to: Michelle Peate, Postal address: Psycho-Oncology Co-Operative Research Group (PoCoG), Transient Building, The University of Sydney, New South Wales 2006, Australia, or e-mail: michelle.peate@sydney.edu.au.
A key component of decision aids (DAs) are the Value Clarification Exercises (VCEs), however, rat... more A key component of decision aids (DAs) are the Value Clarification Exercises (VCEs), however, rates of completion VCEs are variable. The aim of this paper is to propose explanations for these variations. A review of the rates of completion and the reasons provided across eleven studies evaluating five different DAs was conducted. Retrospective evaluation does not appear to be an indication of prospective use. Differences in mode of administration are unclear. Gender does not appear to have a difference on completion rates. Complexity of the decision appears to reflect rates of VCE completion. The main reason provided for non-completion of VCEs was that patients had already made a decision. VCEs have shown a trend to producing better congruence between values and choices, but it remains unclear how VCEs impact on the quality of the decision. Value of VCEs in treatment decision-making has not been previously established and our data indicate information alone might be enough to clarify concepts. DAs are becoming more widely used in practice. It is important to understand the elements in a treatment decision-making so that the burden on the patient is at a minimum in practice.
Current practice in genetic counseling may not allow a full deliberation of the consequences of d... more Current practice in genetic counseling may not allow a full deliberation of the consequences of decisions about genetic testing for cancer risk, despite increasing demand for these services. Thus, two decision aids for individuals considering genetic testing for hereditary breast/ovarian cancer and hereditary non-polyposis colorectal cancer (HNPCC) susceptibility were developed and pilot tested with 43 individuals who had previously considered genetic testing for these cancer syndromes. A description of the decision aid development process is provided, as well as results of the pilot testing, which assessed participants' perceptions of the decision aids. All participants reported that they would recommend the decision aid to others facing the same situation, and 93% reported that the decision aid would have been relevant during their decision-making. The perceived impact of the decision aids on participants' emotions and understanding of genetic testing were assessed. Limitations of the study and future directions are discussed.
ABSTRACT There is increasing recognition that adolescents and young adults (AYAs) with chronic il... more ABSTRACT There is increasing recognition that adolescents and young adults (AYAs) with chronic illnesses experience common psychological challenges. This article reviewed published psychological interventions for AYAs with cancer, diabetes, juvenile idiopathic arthritis, sickle cell disease, and asthma. Common, efficacious intervention components were examined to generate clearer recommendations for future age-appropriate, evidence-based intervention development. Five databases including MEDLINE, MEDLINE In Process & Non-Indexed Citations, PsycINFO, EMBASE, and CINAHL, were searched for studies involving AYAs aged 10-30 years, using quantitative two-group methods, published from 1979-2010. Of 1,233 abstracts, 87 were extracted for further analysis and a final 25 studies were eligible for inclusion. Thirteen of these studies included AYAs with diabetes, 7 studies involved AYAs with cancer, and 5 included AYAs with other illnesses. Educational interventions showed some significant positive results, particularly when targeted knowledge outcomes were measured. Several skills-based programs, some including parents, showed positive results, with moderate effect sizes. Interventions which taught communication skills, incorporated practical components (e.g., role-plays, homework), involved ≥6 sessions, and spanned at least 3 months in length, appeared more likely to achieve positive outcomes. Skills-based interventions delivered over multiple sessions may yield the most positive results in AYAs with chronic illness. Given the few peer-support groups eligible for review, their efficacy remains unclear. This review points to the need for intervention development that teaches adaptive coping skills, is grounded in theoretical frameworks, and adheres to strict randomization and independent assessments to evaluate efficacy in assisting AYAs adjust to chronic illness.
Breast cancer is the most commonly diagnosed type of cancer in reproductive aged women. Adjuvant ... more Breast cancer is the most commonly diagnosed type of cancer in reproductive aged women. Adjuvant systemic therapy is recommended in most women and has been demonstrated to reduce the risk of recurrence and increase survival. However, there may be a negative impact of adjuvant systemic therapy on fertility as well as on subsequent quality of life. There are a number of fertility preservation options currently available and relevant information regarding these options should be provided prior to commencing adjuvant treatment. The aim of the review is to identify the fertility-related needs, concerns and preferences of young women with early breast cancer. The databases MEDLINE and EMBASE were searched from 1988 onwards using keywords, and examining reference lists. Of the 499 articles identified, 20 met eligibility criteria and were reviewed. Multiple fertility-related information needs specific to this group regarding menstrual changes and potential infertility attitudes to, and actual decisions made regarding, pregnancy breastfeeding and contraception emerged. Information on fertility-related decisions was rated as important, and the preferred methods for obtaining this information was consultation with a specialist or a decision aid early in the treatment plan. There is limited research about fertility-related needs, and even less on contraceptive preferences and the attitudes of health care providers towards fertility-related issues. No studies describing the development of tools to assist with decisions about fertility-related choices were identified. Young women with early breast cancer have specific fertility- and menopause-related needs and concerns, which are commonly not adequately addressed or discussed prior to commencing adjuvant therapy.
* Address correspondence and reprint requests to: Michelle Peate, Postal address: Psycho-Oncology... more * Address correspondence and reprint requests to: Michelle Peate, Postal address: Psycho-Oncology Co-Operative Research Group (PoCoG), Transient Building, The University of Sydney, New South Wales 2006, Australia, or e-mail: michelle.peate@sydney.edu.au.
A key component of decision aids (DAs) are the Value Clarification Exercises (VCEs), however, rat... more A key component of decision aids (DAs) are the Value Clarification Exercises (VCEs), however, rates of completion VCEs are variable. The aim of this paper is to propose explanations for these variations. A review of the rates of completion and the reasons provided across eleven studies evaluating five different DAs was conducted. Retrospective evaluation does not appear to be an indication of prospective use. Differences in mode of administration are unclear. Gender does not appear to have a difference on completion rates. Complexity of the decision appears to reflect rates of VCE completion. The main reason provided for non-completion of VCEs was that patients had already made a decision. VCEs have shown a trend to producing better congruence between values and choices, but it remains unclear how VCEs impact on the quality of the decision. Value of VCEs in treatment decision-making has not been previously established and our data indicate information alone might be enough to clarify concepts. DAs are becoming more widely used in practice. It is important to understand the elements in a treatment decision-making so that the burden on the patient is at a minimum in practice.
Current practice in genetic counseling may not allow a full deliberation of the consequences of d... more Current practice in genetic counseling may not allow a full deliberation of the consequences of decisions about genetic testing for cancer risk, despite increasing demand for these services. Thus, two decision aids for individuals considering genetic testing for hereditary breast/ovarian cancer and hereditary non-polyposis colorectal cancer (HNPCC) susceptibility were developed and pilot tested with 43 individuals who had previously considered genetic testing for these cancer syndromes. A description of the decision aid development process is provided, as well as results of the pilot testing, which assessed participants' perceptions of the decision aids. All participants reported that they would recommend the decision aid to others facing the same situation, and 93% reported that the decision aid would have been relevant during their decision-making. The perceived impact of the decision aids on participants' emotions and understanding of genetic testing were assessed. Limitations of the study and future directions are discussed.
ABSTRACT There is increasing recognition that adolescents and young adults (AYAs) with chronic il... more ABSTRACT There is increasing recognition that adolescents and young adults (AYAs) with chronic illnesses experience common psychological challenges. This article reviewed published psychological interventions for AYAs with cancer, diabetes, juvenile idiopathic arthritis, sickle cell disease, and asthma. Common, efficacious intervention components were examined to generate clearer recommendations for future age-appropriate, evidence-based intervention development. Five databases including MEDLINE, MEDLINE In Process & Non-Indexed Citations, PsycINFO, EMBASE, and CINAHL, were searched for studies involving AYAs aged 10-30 years, using quantitative two-group methods, published from 1979-2010. Of 1,233 abstracts, 87 were extracted for further analysis and a final 25 studies were eligible for inclusion. Thirteen of these studies included AYAs with diabetes, 7 studies involved AYAs with cancer, and 5 included AYAs with other illnesses. Educational interventions showed some significant positive results, particularly when targeted knowledge outcomes were measured. Several skills-based programs, some including parents, showed positive results, with moderate effect sizes. Interventions which taught communication skills, incorporated practical components (e.g., role-plays, homework), involved ≥6 sessions, and spanned at least 3 months in length, appeared more likely to achieve positive outcomes. Skills-based interventions delivered over multiple sessions may yield the most positive results in AYAs with chronic illness. Given the few peer-support groups eligible for review, their efficacy remains unclear. This review points to the need for intervention development that teaches adaptive coping skills, is grounded in theoretical frameworks, and adheres to strict randomization and independent assessments to evaluate efficacy in assisting AYAs adjust to chronic illness.
Breast cancer is the most commonly diagnosed type of cancer in reproductive aged women. Adjuvant ... more Breast cancer is the most commonly diagnosed type of cancer in reproductive aged women. Adjuvant systemic therapy is recommended in most women and has been demonstrated to reduce the risk of recurrence and increase survival. However, there may be a negative impact of adjuvant systemic therapy on fertility as well as on subsequent quality of life. There are a number of fertility preservation options currently available and relevant information regarding these options should be provided prior to commencing adjuvant treatment. The aim of the review is to identify the fertility-related needs, concerns and preferences of young women with early breast cancer. The databases MEDLINE and EMBASE were searched from 1988 onwards using keywords, and examining reference lists. Of the 499 articles identified, 20 met eligibility criteria and were reviewed. Multiple fertility-related information needs specific to this group regarding menstrual changes and potential infertility attitudes to, and actual decisions made regarding, pregnancy breastfeeding and contraception emerged. Information on fertility-related decisions was rated as important, and the preferred methods for obtaining this information was consultation with a specialist or a decision aid early in the treatment plan. There is limited research about fertility-related needs, and even less on contraceptive preferences and the attitudes of health care providers towards fertility-related issues. No studies describing the development of tools to assist with decisions about fertility-related choices were identified. Young women with early breast cancer have specific fertility- and menopause-related needs and concerns, which are commonly not adequately addressed or discussed prior to commencing adjuvant therapy.
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