RESUMO
End-of-life Goals of Care (GoC) discussions aim to support care that is consistent with patients' preferences and values. This study uses an exploratory qualitative design drawing upon a social constructivist epistemology to examine family carers' perspectives on GoC within acute Australian hospital settings. Twenty-five family carers of aging inpatients were recruited from six Australian hospitals to participate in recorded, semi-structured interviews. Data were transcribed and analyzed using reflexive thematic analysis. Three main themes were developed. Theme 1 explored carers' experiences of GoC discussions-identifying varying levels of preparedness and carers' hopes for open, two-way discussions initiated by empathic Health Care Professionals (HCPs). Theme 2 examined carers' unmet needs for time, space, consistency, and support to make careful decisions. Theme 3 identified carers advocating for patients' needs when they could not do it themselves. Preparing carers and normalizing GoC discussions relating to end-of-life care maximizes benefits for patients, carers, and HCPs involved.
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Cuidadores , Pessoal de Saúde , Humanos , Austrália , Hospitais , Planejamento de Assistência ao Paciente , Pesquisa QualitativaRESUMO
Advance Care Planning involves having conversations, completing documents detailing individuals' end-of life treatment and care preferences, and appointing legal proxies who make health, lifestyle, or financial decisions. Although beneficial outcomes have been demonstrated, community rates of Advance Care Planning remain low. We developed a theoretically based workshop to increase knowledge and change behaviors in relation to Advance Care Planning; 347 participants completed the workshop. Advance Care Planning knowledge and action significantly improved three months post workshop. The intervention increased Advance Care Planning knowledge and changed behaviors.
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Planejamento Antecipado de Cuidados , Assistência Terminal , Humanos , ComunicaçãoRESUMO
Background: Health professionals who care for patients and their families at the end of life (EOL) may experience gratitude, and enhanced spirituality and meaning in life, yet they are also at increased risk of psychological distress, compassion fatigue, and occupational burnout given the stressors they encounter in their work. Objectives: This research evaluated the feasibility and acceptability of a novel six-week mindfulness-based compassion training intervention, which was tailored to health professionals involved in EOL care ("MBCT4HP"), and explored its impact on levels of psychological distress, compassion fatigue, compassion satisfaction, occupational burnout, self-compassion, and mindfulness. Design: We adopted an observational, repeated measures pilot study. Setting/Subjects: Thirty-one health professionals participated. The intervention comprised six, weekly sessions (totaling seven hours) designed to foster compassion for self and others, including formal and informal compassion and mindfulness practices, daily home practice, and a reflective experiential pedagogy. Measurements: Validated outcome measures for anxiety, depression, and stress; compassion satisfaction, compassion fatigue (burnout, secondary traumatic stress); occupational burnout (emotional exhaustion, personal accomplishment, and depersonalization), self-compassion, and mindfulness were administered at baseline, end of intervention, and eight weeks postintervention. The feasibility and acceptability of the intervention was assessed using attendance records, home practice logs, and self-report satisfaction items. Descriptive statistics and Generalized Linear Mixed Models were used to analyze the data. Results: Participants reported that the sessions were useful, relevant, easy to understand, and that they gave them sufficient knowledge to implement the strategies learned. Levels of anxiety, compassion fatigue (burnout only), and emotional exhaustion decreased over time with some decay in effects at follow up, and levels of compassion satisfaction and self-compassion increased with time. Conclusions: The intervention was feasible and acceptable to health professionals involved in EOL care and had a positive impact on levels of anxiety, compassion fatigue (burnout), emotional exhaustion, compassion satisfaction, and self-compassion.
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Esgotamento Profissional , Fadiga de Compaixão , Atenção Plena , Assistência Terminal , Empatia , Estudos de Viabilidade , Humanos , Projetos PilotoRESUMO
BACKGROUND: Goals of care (GOC) is a communication and decision-making process that occurs between a clinician and a patient (or surrogate decision-maker) during an episode of care to facilitate a plan of care that is consistent with the patient's preferences and values. Little is known about patients' experiences of these discussions. OBJECTIVE: This study explored patients' perspectives of the GOC discussion in the hospital setting. DESIGN: An explorative qualitative design was used within a social constructionist framework. PARTICIPANTS: Adult patients were recruited from six Australian hospitals across two states. Eligible patients had had a GOC discussion and they were identified by the senior nurse or their doctor for informed consent and interview. APPROACH: Semi-structured individual or dyadic interviews (with the carer/family member present) were conducted at the bedside or at the patient's home (for recently discharged patients). Interviews were audio-recorded and transcribed verbatim. Data were analysed for themes. KEY RESULTS: Thirty-eight patient interviews were completed. The key themes identified were (1) values and expectations, and (2) communication (sub-themes: (i) facilitators of the conversation, (ii) barriers to the conversation, and (iii) influence of the environment). Most patients viewed the conversation as necessary and valued having their preferences heard. Effective communication strategies and a safe, private setting were facilitators of the GOC discussion. Deficits in any of these key elements functioned as a barrier to the process. CONCLUSIONS: Effective communication, and patients' values and expectations set the stage for goals of care discussions; however, the environment plays a significant role. Communication skills training and education designed to equip clinicians to negotiate GOC interactions effectively are essential. These interventions must also be accompanied by systemic changes including building a culture supportive of GOC, clear policies and guidelines, and champions who facilitate uptake of GOC discussions.
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Comunicação , Planejamento de Assistência ao Paciente , Adulto , Austrália , Família , Hospitais , Humanos , Pesquisa QualitativaRESUMO
BACKGROUND: Despite a growth in palliative care services, access and referral patterns are inconsistent and only a minority of people who would benefit from such care receive it. Use of palliative care is also affected by community attitudes toward palliative care. As such, determining community attitudes toward palliative care is crucial. We also need to determine what predicts attitudes in order to provide appropriate information and education. OBJECTIVES: The 2 research questions were: (1) What are community attitudes toward palliative care? and (2) what are the determinants of community attitudes toward palliative care? DESIGN: A tripartite model of attitudes was used, which articulates attitudes as comprising knowledge and experience, emotions, and beliefs. A cross-sectional descriptive survey was used. PARTICIPANTS: A community sample of 180 participants completed the survey. RESULTS: The average attitude and belief responses were very positive, the average emotions responses were somewhat positive. The sample had good knowledge of palliative care. Lowest knowledge scores were reported for the items: "Euthanasia is not part of palliative care," "Palliative care does not prolong or shorten life," and "Specialist palliative care is only available in hospitals." After controlling place of birth and age, it was found that beliefs, emotions, and knowledge each accounted for a significant proportion of unique variance in attitude toward palliative care. Each variable had a positive relationship with attitude. CONCLUSION: Beliefs, emotions, and knowledge all need to be incorporated into palliative care community education programs.
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Conhecimentos, Atitudes e Prática em Saúde , Cuidados Paliativos/organização & administração , Opinião Pública , Adulto , Idoso , Idoso de 80 Anos ou mais , Austrália , Estudos Transversais , Emoções , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto JovemRESUMO
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 (X2 = 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.
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Comunicação , Educação em Enfermagem/métodos , Enfermagem Oncológica/educação , Enfermagem Oncológica/métodos , Adulto , Idoso , Austrália , Competência Cultural/educação , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Grupos Minoritários , Enfermeiros Clínicos/educação , Inquéritos e QuestionáriosRESUMO
In patients with early breast cancer, personal and tumour characteristics other than family history are increasingly used to prompt genetic testing to guide women's cancer management (treatment-focused genetic testing, 'TFGT'). Women without a known strong family history of breast and/or ovarian may be more vulnerable to psychological sequelae arising from TFGT. We compared the impact of TFGT in women with (FH+) and without (FH-) a strong family history on psychological adjustment and surgical decisions. Women aged <50 years with high-risk features were offered TFGT before definitive breast cancer surgery and completed self-report questionnaires at four time points over 12 months. All 128 women opted for TFGT. TFGT identified 18 carriers of a disease-causing variant (50.0% FH+) and 110 non-carriers (59.1% FH+). There were no differences based on family history in bilateral mastectomy (BM) uptake, p = .190, or uptake of risk-reducing bilateral salpingo-oophorectomy (RRBSO), p = .093. FH- women had lower decreases in anxiety a year after diagnosis, p = .011, and regret regarding their decision whether to undergo BM, p = .022, or RRBSO, p = .016 than FH + women. FH- carriers reported significantly higher regret regarding their TFGT choice (p = .024) and test-related distress (p = .012) than FH + carriers, but this regret/distress could not be attributed to a concern regarding a possible worse prognosis. These findings indicate that FH- women may require additional counselling to facilitate informed decisions. Carriers without a family history may require additional follow-up counselling to facilitate psychological adjustment to their positive variant results, extra support in making surgical decisions, and counselling about how best to communicate results to family members.
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Neoplasias da Mama/genética , Testes Genéticos , Anamnese , Neoplasias Ovarianas/genética , Adulto , Proteína BRCA1/genética , Proteína BRCA2/genética , Neoplasias da Mama/epidemiologia , Neoplasias da Mama/psicologia , Neoplasias da Mama/cirurgia , Tomada de Decisões , Feminino , Heterozigoto , Humanos , Pessoa de Meia-Idade , Mutação , Neoplasias Ovarianas/epidemiologia , Neoplasias Ovarianas/psicologia , Neoplasias Ovarianas/cirurgia , Autorrelato , Resultado do TratamentoRESUMO
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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Atitude do Pessoal de Saúde , Comunicação , Competência Cultural , Pessoal de Saúde/psicologia , Grupos Minoritários/psicologia , Enfermagem Oncológica/métodos , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa QualitativaRESUMO
BACKGROUND: Cancer results in a wide range of challenges that contribute to patient distress. Detecting distress in patients can result in improved patient outcomes, and early intervention can avoid patients having unmet needs. OBJECTIVES: The aims were to determine the prevalence of distress in patients with gynecologic cancers, identify specific problems, and explore staff perceptions of distress screening. METHODS: A mixed-methods design was used. Quantitative data were collected on distress levels and problems. Qualitative interviews were conducted with healthcare professionals. FINDINGS: Sixty-six percent of women scored 4 or greater on the Distress Thermometer, which was used as the indicator for follow-up or referral. A third reported low distress, and the same proportion was highly distressed. The top five problems identified by participants were nervousness, worry, fears, fatigue, and sleep problems.
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Detecção Precoce de Câncer/psicologia , Neoplasias dos Genitais Femininos/prevenção & controle , Qualidade de Vida , Transtornos do Sono-Vigília/epidemiologia , Estresse Psicológico/epidemiologia , Adulto , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Ansiedade/epidemiologia , Estudos de Avaliação como Assunto , Fadiga/epidemiologia , Medo , Feminino , Neoplasias dos Genitais Femininos/psicologia , Humanos , Incidência , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Fatores de Risco , Transtornos do Sono-Vigília/etiologia , Estresse Psicológico/etiologiaRESUMO
PURPOSE: Increasingly, women newly diagnosed with breast cancer are being offered treatment-focused genetic testing (TFGT). As the demand for TFGT increases, streamlined methods of genetic education are needed. METHODS: In this noninferiority trial, women aged <50 years with either a strong family history (FH+) or other features suggestive of a germ-line mutation (FH-) were randomized before definitive breast cancer surgery to receive TFGT education either as brief written materials (intervention group (IG)) or during a genetic counseling session at a familial cancer clinic (usual-care group (UCG)). Women completed self-report questionnaires at four time points over 12 months. RESULTS: A total of 135 women were included in the analysis, all of whom opted for TFGT. Decisional conflict about TFGT choice (primary outcome) was not inferior in the IG compared with the UCG (noninferiority margin of -10; mean difference = 2.45; 95% confidence interval -2.87-7.76; P = 0.36). Costs per woman counseled in the IG were significantly lower (AUD$89) compared with the UCG (AUD$173; t(115) = 6.02; P < 0.001). CONCLUSION: A streamlined model of educating women newly diagnosed with breast cancer about TFGT seems to be a cost-effective way of delivering education while ensuring that women feel informed and supported in their decision making, thus freeing resources for other women to access TFGT.Genet Med 19 4, 448-456.
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Neoplasias da Mama/genética , Aconselhamento Genético/economia , Adolescente , Adulto , Proteína BRCA1/genética , Proteína BRCA2/genética , Neoplasias da Mama/terapia , Análise Custo-Benefício , Tomada de Decisões , Feminino , Aconselhamento Genético/métodos , Testes Genéticos , Mutação em Linhagem Germinativa , Humanos , Pessoa de Meia-Idade , Autorrelato , Adulto JovemRESUMO
PURPOSE: People diagnosed with cancer from rural and remote locations may experience heightened distress because of distance from cancer treatment and support services. We examined whether remoteness and other factors are associated with psychosocial distress and explored commonly reported problems among cancer patients in Western Australia (WA). METHODS: In a cross-sectional study, cancer patients newly referred to a Cancer Council WA Cancer Support Coordinator (CSC) were screened and assessed using the Distress Thermometer (DT) and Problem List (PL) and a standardized form, respectively. The index of remoteness was the Australian Standard Geographical Classification. The association between remoteness, demographic variables, and the frequency of problems endorsed on the PL was analyzed using bivariate analyses and a generalized linear mixed model (GLMM) regression. RESULTS: Of 1032 patients referred to a CSC, 466 were screened (45.2 %) with complete data available for 441 patients. Patients from remote areas reported fewer problems than patients from urban and regional locations. Increasing remoteness was not associated with higher distress (r = -0.04, p = 0.43). Concerns reported differed by remoteness category and included worry, sadness, fears, finances, transportation, and physical symptoms. More emotional problems were independently associated with higher distress (ß = 0.47, p < 0.001), explaining 17.31 % of the variance. CONCLUSIONS: There is no evidence that increasing remoteness is associated with higher distress. Emotional concerns and physical problems appear to be prevalent among cancer patients irrespective of urban or rural location. Specific concerns detected by distress screening, particularly emotional concerns, may warrant further assessment and targeted referrals.
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Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Neoplasias/psicologia , População Rural/estatística & dados numéricos , Estresse Psicológico , População Urbana/estatística & dados numéricos , Idoso , Estudos Transversais , Medo , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/diagnóstico , Neoplasias/epidemiologia , Neoplasias/terapia , Prevalência , Apoio Social , Estatística como Assunto , Estresse Psicológico/diagnóstico , Estresse Psicológico/epidemiologia , Estresse Psicológico/fisiopatologia , Austrália Ocidental/epidemiologiaRESUMO
OBJECTIVE: This study examines the efficacy of an online screening decision aid (DA) for men with a family history of prostate cancer. METHODS: Unaffected Australian men (40-79 years) with at least one affected relative completed the first online questionnaire, were randomized to read either the tailored DA (intervention) or nontailored information about prostate cancer screening (control), then completed a questionnaire postreading and 12 months later. The primary outcome was decisional conflict regarding prostate specific antigen (PSA) testing. The impact of the DA on longitudinal outcomes was analyzed by using random intercept mixed effects models. Logistic and linear regressions were used to analyze the impact of the DA on screening behavior and decision regret. Stage of decision-making was tested as a moderator for decisional conflict and decision regret. The frequency of online material access was recorded. RESULTS: The DA had no effect on decisional conflict, knowledge, inclination toward PSA testing, accuracy of perceived risk, or screening behavior. However, among men considering PSA testing, those who read the DA had lower decision regret compared with men who read the control materials, ß = 0.34, p < .001, 95% confidence interval (CI) = [.22, .53]. CONCLUSIONS: This is the first study to our knowledge to evaluate the uptake and efficacy of an online screening DA among men with a family history of prostate cancer. Men who were undecided about screening at baseline benefitted from the DA, experiencing less regret 12 months later. In relation to decisional conflict, the control materials may have operated as a less complex and equally informative DA.
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Técnicas de Apoio para a Decisão , Detecção Precoce de Câncer/psicologia , Neoplasias da Próstata/psicologia , Adulto , Idoso , Austrália , Conflito Psicológico , Tomada de Decisões , Detecção Precoce de Câncer/métodos , Detecção Precoce de Câncer/estatística & dados numéricos , Humanos , Internet , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Antígeno Prostático Específico/sangue , Neoplasias da Próstata/diagnóstico , Neoplasias da Próstata/genética , Medição de Risco/métodos , Inquéritos e QuestionáriosRESUMO
PURPOSE/OBJECTIVES: To identify women's information and communication preferences about treatment-focused genetic testing (TFGT) in the ovarian cancer context. RESEARCH APPROACH: A qualitative interview study. SETTING: Two familial cancer services and a gynecologic oncology clinic at a major teaching hospital in Australia. PARTICIPANTS: 22 women diagnosed with ovarian cancer who had either advanced disease and had previously undergone TFGT (n = 12) or had been diagnosed in the previous 6-20 weeks with ovarian cancer and had not undergone TFGT (n = 10). METHODOLOGIC APPROACH: Participants were interviewed individually about actual and hypothetical views of TFGT. The interviews were transcribed and organized into themes using qualitative analysis software. FINDINGS: Most women wanted to be informed about TFGT prior to their surgery for ovarian cancer. The majority preferred to receive the information verbally; slightly more women preferred their medical oncologist to deliver the information compared to a genetic specialist or oncology nurse. Women preferred the focus of pretest information to be on them and their treatment. CONCLUSIONS: Women diagnosed with ovarian cancer want information about genetic testing early with focus placed on the potential benefits of genetic testing on treatment. INTERPRETATION: The findings of this study provide much-needed guidance to oncology nurses and other oncology healthcare professionals about when, what, and how information about TFGT should be delivered to patients diagnosed with ovarian cancer. Supportive patient education materials now need to be developed to assist these women in making informed decisions about genetic testing. KNOWLEDGE TRANSLATION: Knowing that women do want TFGT, how they want it presented and by whom, and the content and level of detail that women want means that TFGT can now be presented as an option to women newly diagnosed with ovarian cancer, which may influence firstline treatment. The findings also provide the knowledge required to prepare education tools to assist oncology nurses involved in frontline care.
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Testes Genéticos , Avaliação das Necessidades , Enfermagem Oncológica/métodos , Neoplasias Ovarianas , Educação de Pacientes como Assunto , Adulto , Idoso , Comunicação , Feminino , Humanos , Pessoa de Meia-Idade , Neoplasias Ovarianas/genética , Neoplasias Ovarianas/enfermagem , Neoplasias Ovarianas/psicologia , Preferência do Paciente , Pesquisa QualitativaRESUMO
AIM: This study explored the attitudes of oncology health professionals towards treatment-focused genetic testing (TFGT) for women newly diagnosed with breast cancer. MATERIALS & METHODS: Members of several relevant medical organizations in Australia and New Zealand were invited via email to participate in an online survey. RESULTS: A total of 149 respondents, including 40 surgeons, 46 oncologists and 63 breast care nurses, completed the online questionnaire. The majority of respondents believed that TFGT was useful for patient care (87.3%) and valuable for the treatment and management of breast cancer (90.6%). In multivariable analyses, breast care nurses were significantly more likely to agree that TFGT was useful for patient care and the treatment and management of breast cancer compared with oncologists and surgeons (ß = 0.30; 95% CI: 0.01-0.60; p = 0.045). Participants also agreed that TFGT has an impact on treatment decision-making (96.0%), uptake of bilateral mastectomy (98.7%) and uptake of risk-reducing salpingo-oophorectomy (98.0%) in women newly diagnosed with breast cancer. A slight preference towards surgeons (49.7%) as the best health professional to make the initial offer of TFGT was observed and the majority of respondents suggested the best time to offer TFGT was shortly after diagnosis, when the treatment plan is discussed. CONCLUSION: The findings suggest health professionals have positive attitudes towards TFGT. Future training programs focusing on teamwork models and guidelines specifying health professionals' roles in regards to TFGT and follow-up management may be of benefit.
RESUMO
OBJECTIVE: 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. METHODS: A review of the rates of completion and the reasons provided across eleven studies evaluating five different DAs was conducted. RESULTS: 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. CONCLUSION: 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. PRACTICE IMPLICATIONS: 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.
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Tomada de Decisões , Técnicas de Apoio para a Decisão , Neoplasias/psicologia , Participação do Paciente/psicologia , Adulto , Feminino , Humanos , Entrevistas como Assunto , Masculino , Neoplasias/terapia , Participação do Paciente/métodos , Preferência do Paciente , Estudos Prospectivos , Pesquisa Qualitativa , Estudos Retrospectivos , Fatores Sexuais , Inquéritos e QuestionáriosRESUMO
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-oriented retrospective online survey will examine health professionals' attitudes toward TFGT; a health economic analysis will determine the cost effectiveness of the intervention. DISCUSSION: This trial will provide crucial information about the impact, efficiency and cost effectiveness of an educational pamphlet designed to inform younger women newly diagnosed with breast cancer about genetic testing. Issues regarding implementation of the trial are discussed.
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Neoplasias da Mama/psicologia , Aconselhamento Genético , Testes Genéticos , Fatores Etários , Neoplasias da Mama/genética , Neoplasias da Mama/terapia , Protocolos Clínicos , Feminino , Genes BRCA1 , Genes BRCA2 , Aconselhamento Genético/ética , Testes Genéticos/ética , Humanos , MutaçãoRESUMO
In this study we explored the psychosocial experiences of melanoma survivors at high risk of developing new primary disease. A total of 20 survivors (9 men, 11 women, mean age 57.6 years) completed a semistructured telephone interview, exploring melanoma-related beliefs and experiences, psychological adjustment to melanoma risk, and supportive care needs. Participants perceived melanoma as potentially terminal and reported persistent worries about the possibility of developing new or metastatic disease. Fear of developing a new melanoma endured for years after treatment completion and, for some, created a pervasive sense of uncertainty. Still, not a single participant sought formal emotional support to address his or her melanoma-related concerns. Belief in the benefits of early intervention, including self- and clinical skin examination, provided a sense of control and a recommended course of action in an otherwise uncontrollable situation. The expertise of the High Risk Clinic physicians was perceived as instrumental in creating a sense of reassurance.
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Melanoma/psicologia , Risco , Apoio Social , Estresse Psicológico/terapia , Sobreviventes/psicologia , Adaptação Psicológica , Adulto , Idoso , Austrália , Progressão da Doença , Feminino , Humanos , Masculino , Melanoma/mortalidade , Melanoma/patologia , Pessoa de Meia-Idade , Complicações Pós-Operatórias , Pesquisa Qualitativa , Comportamento de Redução do Risco , Autoimagem , Inquéritos e Questionários , IncertezaRESUMO
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.
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Neoplasias da Mama/genética , Testes Genéticos , Educação de Pacientes como Assunto , Preferência do Paciente , Adulto , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/terapia , Feminino , Humanos , Pessoa de Meia-Idade , Folhetos , Satisfação do Paciente , Projetos Piloto , Pesquisa Qualitativa , Fatores de TempoAssuntos
Neoplasias da Mama/enfermagem , Papel do Profissional de Enfermagem , Relações Enfermeiro-Paciente , Enfermagem Oncológica , Apoio Social , Adulto , Idoso , Neoplasias da Mama/patologia , Neoplasias da Mama/psicologia , Feminino , Humanos , Pessoa de Meia-Idade , Pesquisa em Avaliação de Enfermagem , Satisfação do PacienteRESUMO
This study investigated the association between supportive and collaborative processes and dyadic adjustment in 94 women at increased risk of breast/ovarian cancer and their partners. Participants were recruited through two familial cancer clinics. They completed mailed, self-report questionnaires that included measures of psychological distress, dyadic adjustment (consensus, cohesion and satisfaction) and couple predictor variables (perceived support and team approach). Most couples reported average-to-high levels of consensus, cohesion and satisfaction, with a small proportion of couples (6.4%) reporting scores that reached clinically significant levels of dyadic distress. Greater perceived support was associated with better dyadic consensus and satisfaction, and dyadic cohesion and satisfaction were higher among couples who reported greater use of a team approach. General distress did not moderate the association between dyadic coping and relationship quality. There were no significant relationships between intra-couple congruence on support or team approach, and dyadic adjustment. Most couples had a functional relationship in the face of the current health stressor, although a subgroup may be at elevated risk of negative psychological consequences, including further relationship strain. The results highlight that dyadic coping strategies are important factors involved in the quality of couples' relationship following genetic counselling for breast/ovarian cancer risk.