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PURPOSE:Selective Estrogen Receptor Modulators (SERMs) reduce the risk of breast cancer for women at increased risk by 38%. However, uptake is extremely low and the reasons for this are not completely understood. The aims of this study were to utilize time trade-off methods to determine the degree of risk reduction required to make taking SERMs worthwhile to women, and the factors associated with requiring greater risk reduction to take SERMs.METHODS:Women at increased risk of breast cancer (N=107) were recruited from two familial cancer clinics in Australia. Participants completed a questionnaire either online or in pen and paper format. Hierarchical multiple linear regression analysis was used to analyze the data.RESULTS:Overall, there was considerable heterogeneity in the degree of risk reduction required to make taking SERMs worthwhile. Women with higher perceived breast cancer risk and those with stronger intentions to undergo (or who had undergone) an oophorectomy required a smaller degree of risk reduction to consider taking SERMs worthwhile.CONCLUSION:Women at increased familial risk appear motivated to consider SERMs for prevention. A tailored approach to communicating about medical prevention is essential. Health professionals could usefully highlight the absolute (rather than relative) probability of side effects and take into account an individual's perceived (rather than objective) risk of breast cancer.

Made available in DSpace on 2014-06-11T19:27:25Z (GMT). No. of bitstreams: 0 Previous issue date: 2010-08-26Bitstream added on 2014-06-13T20:16:44Z : No. of bitstreams: 1 borges_ma_me_botfm.pdf: 1336713 bytes, checksum: 635aca89cd104b946aef9b0c6e4153d7 (MD5) / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES) / Apesar do reconhecimento da importância da participação do doente na tomada de decisões médicas, apenas recentemente os profissionais de saúde vem se conscientizando da necessidade de informá-los sobre as opções de tratamento e da necessidade de encorajá-los a participar de tais decisões. É escasso o conhecimento sobre o processo de tomada de decisão, sobre as preferências dos pacientes e de como melhorar a comunicação com pacientes, cuidadores e familiares. Os objetivos do presente estudo foram: avaliar as possíveis diferenças entre as preferências no processo de tomada de decisão pelos pacientes, cuidadores e médicos; e avaliar se as preferências dos pacientes durante a tomada de decisões estão relacionadas às variações demográfico-sócio-econômico-culturais. Foi elaborado protocolo de pesquisa, utilizando-se instrumentos validados, para ser empregado nas entrevistas com doentes, cuidadores e médicos. Os pacientes preferem compartilhar a decisão de tratamento com a família em 57,5% dos casos e preferem que o médico decida seu tratamento em 62% das vezes. Há concordância em informar o diagnóstico para 94,5% dos doentes, 95% dos familiares e 92,5% dos médicos. Também há aceitação de que o doente deva ser informado do prognóstico para 65% dos pacientes, 72,5% dos familiares e 82,5% dos médicos. O grau de concordância sobre as preferências de tratamento entre as respostas fornecidas pelo paciente e as respostas fornecidas pelo médico resultou em Kappa = 0,0227, o que significa baixa concordância. As variáveis demográfico-sócio-econômico-culturais não influenciaram as preferências do paciente frente ao papel da família. As preferências em relação à escolha do tratamento por parte do doente, do familiar e do médico revelam percepções diferentes, e estes são incapazes de predizer as preferências do doente. No presente estudo não se... / Despite what is known about the importance for patients to participate in the decision-making process, just in recent times health professionals are becoming aware of the need to inform patients about the treatment options and also encourage them to take the lead in medical decisions. The decision-making process concerning patient participation and how to improve communication among patients, caregivers and family members is scarce. The aim of this study was: to evaluate possible differences among the decision-making process comparing patients, caregivers and physicians choices and evaluate whether patients preferences during the decisionmaking process are related to variations in demographic, socio-economic and cultural levels. A research protocol was created, using validated instruments to be used in interviews with patients, caregivers and physicians. Patients prefer to share treatment decision with the family in 57.5% of cases and prefer that the doctor decides for the treatment in 62% of the situations. There is an agreement that the diagnosis must be informed for 94.5% of the patients, 95% of the families and 92.5% of the doctors. There is also acceptance that the patient should be informed of the prognosis for 65% of the patients, 72.5% of the families and 82.5% of the physicians. The agreement level between the answers given by the patients and the answers given by their doctors about treatment preferences resulted in Kappa = 0.0227, which means low agreement. The demographic and socio-economic variables did not influenced the patient preferences towards the family. Preferences regarding the choice of treatment by patient, family and physician showed different perceptions, and physicians are unable to predict the preferences of the patient. This study showed no correlation in the preferences of the patient, the caregiver and the physician in the decision-making process. Likewisi, ... (Complete abstract click electronic access below)

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Treatment decision making (TDM) in oncology is complex. Understanding treatment information is essential for shared TDM. Research suggests many patients have low numeracy. This mixed methods study explored numeracy and experience with numbers in a sample of individuals diagnosed with follicular lymphoma. Participants completed questionnaires (N = 32) and interviews (N = 20) assessing numeracy, decisional conflict and regret, and number preference. Results suggest that mean objective numeracy was relatively high, and most reported high confidence in numerical ability. Most participants preferred to receive numbers during the TDM process. There was no relationship between numeracy and decision outcomes. Future research should investigate the use of numeracy measures in practice and the impact of patient preferences and beliefs on shared TDM.

Degenerative disease of the lumbar spine (DDLS) is a common condition for which surgery is beneficial in selected patients. Wide variation in surgical referral and rates of surgery has been observed contributing to unequal access to care. Our objectives were to examine (1) the variation in preferences for referral and surgery among surgeons, family physicians (FPs) and patients, (2) how FP referral practices compare with preferences and guideline recommendations, and (3) how the ‘enthusiasm’ of patients and physicians influence regional variation in surgical rates. We used conjoint analysis in a mailed survey to elicit preferences based on clinical vignettes from surgeons, FPs and patients. A Delphi expert panel provided consensus guideline recommendations for surgical referral to compare with actual FP referral practices. Rates of surgery for DDLS, obtained from Ontario hospital discharge data, were used to quantify regional variation and regression models assessed the relationship with patient and physician enthusiasm. We identified significant differences in preferences for referral and surgery between patients, FPs and surgeons. Surgeons placed high importance on leg-dominant symptoms while patients had high importance for quality of life symptoms (i.e. severity, duration, walking tolerance). Surgical referral practices were poorly predicted by individual FP preferences and guideline recommendations based on clinical factors alone. Variation in Ontario surgical rates was higher than that of hip or knee replacements and was highly associated with the enthusiasm of surgeons (p<0.008), rather than FPs or patients. By appreciating the variation in preferences between patients and physicians, and exploring other non-clinical factors that influence referrals, we may be able to improve the efficiency of referrals and enhance the shared decision making process. With an understanding of the influence that surgeons have in driving variation in surgical rates, further research may allow us to direct strategies to improve access and allow for a more equitable delivery of care for patients suffering from DDLS.

Degenerative disease of the lumbar spine (DDLS) is a common condition for which surgery is beneficial in selected patients. Wide variation in surgical referral and rates of surgery has been observed contributing to unequal access to care. Our objectives were to examine (1) the variation in preferences for referral and surgery among surgeons, family physicians (FPs) and patients, (2) how FP referral practices compare with preferences and guideline recommendations, and (3) how the ‘enthusiasm’ of patients and physicians influence regional variation in surgical rates. We used conjoint analysis in a mailed survey to elicit preferences based on clinical vignettes from surgeons, FPs and patients. A Delphi expert panel provided consensus guideline recommendations for surgical referral to compare with actual FP referral practices. Rates of surgery for DDLS, obtained from Ontario hospital discharge data, were used to quantify regional variation and regression models assessed the relationship with patient and physician enthusiasm. We identified significant differences in preferences for referral and surgery between patients, FPs and surgeons. Surgeons placed high importance on leg-dominant symptoms while patients had high importance for quality of life symptoms (i.e. severity, duration, walking tolerance). Surgical referral practices were poorly predicted by individual FP preferences and guideline recommendations based on clinical factors alone. Variation in Ontario surgical rates was higher than that of hip or knee replacements and was highly associated with the enthusiasm of surgeons (p<0.008), rather than FPs or patients. By appreciating the variation in preferences between patients and physicians, and exploring other non-clinical factors that influence referrals, we may be able to improve the efficiency of referrals and enhance the shared decision making process. With an understanding of the influence that surgeons have in driving variation in surgical rates, further research may allow us to direct strategies to improve access and allow for a more equitable delivery of care for patients suffering from DDLS.

Shared Decision Making (SDM) in medical consultations has received significant attention in the literature over the past 10 years. Research indicates that patients’ desire both components of SDM, information sharing and behavioural involvement, to differing degrees (Flynn, Smith, & Vanness, 2006) and that matching medical care to these preferences may be associated with better patient health outcomes (Cvengros, Christensen, Cunningham, Hillis, & Kaboli, 2009). In this thesis, relationships between SDM preferences and patients’ personal characteristics (demographic factors and personality attributes) were investigated (Objective one), as well as associations between patient’s SDM preferences and the features of the health concern that they were seeking care for (Objective two). The current study used 158 Christchurch residents who were part of a longitudinal health and wellbeing study. They completed a questionnaire that measured their general SDM preferences, their demographic and personality characteristics and their preferences for SDM, given four hypothetical health complaints. These complaints varied in duration and perceived seriousness. Demographic variables and personality variables accounted for approximately the same amount of variance in participants’ general preferences for SDM, together describing 33% and 42% of the variance in information sharing and behavioural involvement. The strongest contributors were all three Health Locus of Control variables, sex and education level. Big Five personality traits and participant self-rated physical health did not account for a significant amount of variance in SDM preferences, once all variables were controlled for. In addition, the features of the health concern were marginally associated with participants’ SDM preferences for that specific consultation. Between-subjects analyses found that the duration or perceived seriousness of the health complaint were not associated with SDM preferences reported within the first scenario, once participants’ general SDM preferences were accounted for. Whereas, these two features described a significant amount of variance in participants’ information sharing preferences in the within-subjects analyses, when participants’ general SDM preferences were controlled for. Post-hoc analyses reported that chronic health complaints, that were perceived to be highly serious, elicited significantly greater preferences for information exchange than all other scenarios. No association occurred for participants’ preferences for involvement in final decision making across the four scenarios. The findings emphasise that differences occur in patients’ preferences for information sharing and behavioural involvement; both in regard to their general preferences and their specific preferences for these components of SDM within a given consultation. They also identify the central role that patients’ personality characteristics may play in determining their collaboration and involvement in healthcare; associations that are often overlooked by the SDM literature. The current findings contribute to our understanding of patient’s preferences for SDM and implications for practice and future research are discussed.

Orientador: Guilherme Antonio Moreira de Barros / Banca: Norma Sueli Pinheiro Módolo / Banca: Karine Azevedo São Leão Ferreira / Resumo: Apesar do reconhecimento da importância da participação do doente na tomada de decisões médicas, apenas recentemente os profissionais de saúde vem se conscientizando da necessidade de informá-los sobre as opções de tratamento e da necessidade de encorajá-los a participar de tais decisões. É escasso o conhecimento sobre o processo de tomada de decisão, sobre as preferências dos pacientes e de como melhorar a comunicação com pacientes, cuidadores e familiares. Os objetivos do presente estudo foram: avaliar as possíveis diferenças entre as preferências no processo de tomada de decisão pelos pacientes, cuidadores e médicos; e avaliar se as preferências dos pacientes durante a tomada de decisões estão relacionadas às variações demográfico-sócio-econômico-culturais. Foi elaborado protocolo de pesquisa, utilizando-se instrumentos validados, para ser empregado nas entrevistas com doentes, cuidadores e médicos. Os pacientes preferem compartilhar a decisão de tratamento com a família em 57,5% dos casos e preferem que o médico decida seu tratamento em 62% das vezes. Há concordância em informar o diagnóstico para 94,5% dos doentes, 95% dos familiares e 92,5% dos médicos. Também há aceitação de que o doente deva ser informado do prognóstico para 65% dos pacientes, 72,5% dos familiares e 82,5% dos médicos. O grau de concordância sobre as preferências de tratamento entre as respostas fornecidas pelo paciente e as respostas fornecidas pelo médico resultou em Kappa = 0,0227, o que significa baixa concordância. As variáveis demográfico-sócio-econômico-culturais não influenciaram as preferências do paciente frente ao papel da família. As preferências em relação à escolha do tratamento por parte do doente, do familiar e do médico revelam percepções diferentes, e estes são incapazes de predizer as preferências do doente. No presente estudo não se ... (Resumo completo, clicar acesso eletrônico abaixo) / Abstract: Despite what is known about the importance for patients to participate in the decision-making process, just in recent times health professionals are becoming aware of the need to inform patients about the treatment options and also encourage them to take the lead in medical decisions. The decision-making process concerning patient participation and how to improve communication among patients, caregivers and family members is scarce. The aim of this study was: to evaluate possible differences among the decision-making process comparing patients, caregivers and physicians choices and evaluate whether patients preferences during the decisionmaking process are related to variations in demographic, socio-economic and cultural levels. A research protocol was created, using validated instruments to be used in interviews with patients, caregivers and physicians. Patients prefer to share treatment decision with the family in 57.5% of cases and prefer that the doctor decides for the treatment in 62% of the situations. There is an agreement that the diagnosis must be informed for 94.5% of the patients, 95% of the families and 92.5% of the doctors. There is also acceptance that the patient should be informed of the prognosis for 65% of the patients, 72.5% of the families and 82.5% of the physicians. The agreement level between the answers given by the patients and the answers given by their doctors about treatment preferences resulted in Kappa = 0.0227, which means low agreement. The demographic and socio-economic variables did not influenced the patient preferences towards the family. Preferences regarding the choice of treatment by patient, family and physician showed different perceptions, and physicians are unable to predict the preferences of the patient. This study showed no correlation in the preferences of the patient, the caregiver and the physician in the decision-making process. Likewisi, ... (Complete abstract click electronic access below) / Mestre

付記する学位プログラム名: デザイン学大学院連携プログラム / 京都大学 / 0048 / 新制・課程博士 / 博士(情報学) / 甲第22803号 / 情博第733号 / 新制||情||125(附属図書館) / 京都大学大学院情報学研究科社会情報学専攻 / (主査)教授 黒田 知宏, 教授 矢守 克也, 特定教授 川上 浩司 / 学位規則第4条第1項該当 / Doctor of Informatics / Kyoto University / DFAM