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INTRODUCTION: Consent to biobanking remains controversial, with little empirical data to guide policy and practice. This study aimed to explore the attitudes, motivations, and concerns of both oncology patients and health care professionals (HCPs) regarding biobanking. MATERIALS AND METHODS: Qualitative interviews were conducted with oncology patients and HCPs purposively selected from five Australian hospitals. Patients were invited to give biobanking consent as part of a clinical trial and/or for future research were eligible. HCPs were eligible if involved in consenting patients to biobanking or to donate specimens to clinical trials. RESULTS: Twenty-two patients participated, with head and neck (36%) and prostate (18%) the most common cancer diagnoses; all had consented to biobanking. Twenty-two HCPs participated, from across eight cancer streams and five disciplines. Themes identified were (a) biobanking is a "no brainer"; (b) altruism or scientific enquiry; (c) trust in clinicians, science, and institutions; (d) no consent-just do it; (e) respecting patient choice ("opt-out"); (f) respectful timing of the request; (g) need for emotional/family support; (h) context of the biobanking request matters; and (i) factors for biobanking success. DISCUSSION: These findings reinforced previous findings regarding high public trust in, and support for, biobanking. An initial opt-in consent approach with the option of later opt-out was favored by patients to respect and recognize donor generosity, whereas HCPs preferred an upfront opt-out model. Factors impacting biobanking success included the context of the request for use in a trial or specific research question, pre-existing patient and HCP rapport, a local institution champion, and infrastructure. IMPLICATIONS FOR PRACTICE: Patients and health care professionals (HCPs) who experienced cancer biobanking consent were overwhelmingly supportive of biobanking. The motivations and approaches to seeking consent were largely mirrored between the groups. The findings of this study support the opt-in model of biobanking favored by patients; however, HCPs preferred an opt-out model. Both groups recognize the importance of making the request for biobanking at an appropriate time, preferably with emotional or family support, and respecting the timing of the request and privacy of the patient. Biobanking success can be promoted by hospital departments with a research focus by identifying an institutional biobanking champion and ensuring local infrastructure is available.
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Bancos de Espécimes Biológicos/legislação & jurisprudência , Pessoal de Saúde/psicologia , Consentimento Livre e Esclarecido/psicologia , Neoplasias/patologia , Doadores de Tecidos/psicologia , Adulto , Idoso , Atitude do Pessoal de Saúde , Austrália , Aconselhamento , Feminino , Humanos , Masculino , Oncologia/legislação & jurisprudência , Pessoa de Meia-Idade , Motivação , Neoplasias/diagnóstico , Neoplasias/psicologia , Neoplasias/cirurgia , Pesquisa Qualitativa , Doadores de Tecidos/legislação & jurisprudência , Obtenção de Tecidos e Órgãos/legislação & jurisprudênciaRESUMO
The impact of a young person's cancer diagnosis extends to siblings, yet support services to address siblings' needs are limited. This study explores healthcare professionals' (HCPs') perspectives on engaging and supporting adolescent and young adult (AYA, 12-25 years) siblings of young cancer patients in hospital settings. Semi-structured interviews with nine HCPs explored participants' views on models of care, engagement and assessment of siblings, available services, barriers to care, and future directions. Participants understood the impact of cancer and need to support AYA siblings, but were unclear how these responsibilities fit in with existing models of care and clinical roles. Siblings' absence from hospitals complicated processes of engagement, assessment and provision of care, challenging some participants to engage siblings outside the clinical context. In the absence of direct contact, HCPs largely relied on patients and parents to report or refer siblings for care. Service and resource limitations further restricted the provision of support to siblings. Despite HCPs' recognition of the need to support siblings, their "invisibility," lack of standardised assessment and service constraints complicate the provision of care in hospital settings. Integrating hospital-based care with community services may better facilitate the engagement and support of AYA siblings.
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Atitude do Pessoal de Saúde , Saúde da Família , Neoplasias , Papel Profissional , Irmãos/psicologia , Adolescente , Adulto , Criança , Atenção à Saúde , Feminino , Acessibilidade aos Serviços de Saúde , Hospitais , Humanos , Masculino , Enfermeiras e Enfermeiros , Oncologistas , Psicologia , Encaminhamento e Consulta , Apoio Social , Assistentes Sociais , Adulto JovemRESUMO
OBJECTIVE: Discussing end-of-life (EOL) care is challenging when death is not imminent, contributing to poor decision-making and EOL quality-of-life. A communication support program (CSP) targeting these issues may facilitate discussions. We aimed to qualitatively explore responses to a nurse-led CSP, incorporating a question prompt list (QPL-booklet of questions patients/caregivers can ask clinicians), promoting life expectancy and EOL-care discussions. METHODS: Participants met a nurse-facilitator to explore an EOL-focussed QPL. Prognosis and advance care planning (ACP) QPL content was highlighted. Thirty-one transcribed meetings were analysed using thematic text analysis before reaching data saturation. RESULTS: Thirty-one advanced cancer patients (life expectancy <12 months) and 11 family caregivers were recruited from six medical oncology clinics in Sydney, Australia. Intent to use the QPL related to information needs, involvement in care and readiness to discuss EOL issues. Many participants did not want life expectancy estimates, citing unreliable estimates, unknown treatment outcomes, or coping by not looking ahead. Most displayed interest in ACP, often motivated by a loved one's EOL experiences, clear treatment preferences, concerns about caregivers or recognition that ACP is valuable regardless of life expectancy. Timing emerged as a reason not to discuss EOL issues; many maintaining it was too early. CONCLUSION: Patients and caregivers appear ambivalent about acknowledging approaching death by discussing life expectancy but value ACP. Given heterogeneity in responses, individualised approaches are required to guide EOL discussion conduct and content. Further exploration of the role of prognostic discussion in ACP is warranted.
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Planejamento Antecipado de Cuidados , Comunicação , Neoplasias/psicologia , Cuidados Paliativos , Participação do Paciente , Assistência Terminal/métodos , Adulto , Idoso , Idoso de 80 Anos ou mais , Austrália , Tomada de Decisões , Feminino , Humanos , Expectativa de Vida , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Relações Médico-Paciente , Prognóstico , Pesquisa Qualitativa , Qualidade de VidaRESUMO
BACKGROUND: Communication about prognosis and treatment choices is essential for informed decision making in advanced cancer. This article describes an investigation designed to facilitate communication and decision making among oncologists, patients with advanced cancer, and their caregivers. METHODS/DESIGN: The Values and Options in Cancer Care (VOICE) Study is a National Cancer Institute sponsored randomized controlled trial conducted in the Rochester/Buffalo, NY and Sacramento, CA regions. A total of 40 oncologists, approximately 400 patients with advanced cancer, and their family/friend caregivers (one per patient, when available) are expected to enroll in the study. Drawing upon ecological theory, the intervention uses a two-pronged approach: oncologists complete a multifaceted tailored educational intervention involving standardized patient instructors (SPIs), and patients and caregivers complete a coaching intervention to facilitate prioritizing and discussing questions and concerns. Follow-up data will be collected approximately quarterly for up to three years. DISCUSSION: The intervention is hypothesized to enhance patient-centered communication, quality of care, and patient outcomes. Analyses will examine the effects of the intervention on key elements of physician-patient-caregiver communication (primary outcomes), the physician-patient relationship, shared understanding of prognosis, patient well-being, and health service utilization (secondary outcomes). TRIAL REGISTRATION: Clinical Trials Identifier: NCT01485627.
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Cuidadores , Comunicação , Tomada de Decisões , Neoplasias/terapia , Educação de Pacientes como Assunto , Médicos , Humanos , Cuidados Paliativos , Relações Médico-Paciente , Relações Profissional-Família , Qualidade de Vida , Projetos de Pesquisa , Assistência TerminalRESUMO
BACKGROUND: Clinicians and patients find prognosis and end-of-life care discussions challenging. Misunderstanding one's prognosis can contribute to poor decision-making and end-of-life quality of life. A question prompt list (booklet of questions patients can ask clinicians) targeting these issues may help overcome communication barriers. None exists for end-of-life discussions outside the palliative care setting. AIM: To develop/pilot a question prompt list facilitating discussion/planning of end-of-life care for oncology patients with advanced cancer from Australia and the United States and to explore acceptability, perceived benefits/challenges of using the question prompt list, suggestions for improvements and the necessity of country-specific adaptations. DESIGN: An expert panel developed a question prompt list targeting prognosis and end-of-life issues. Australian/US semi-structured interviews and one focus group elicited feedback about the question prompt list. Transcribed data were analysed using qualitative methods. SETTING/PARTICIPANTS: Thirty-four patients with advanced cancer (15 Australian/19 US) and 13 health professionals treating such patients (7 Australian/6 US) from two Australian and one US cancer centre participated. RESULTS: Most endorsed the entire question prompt list, though a minority queried the utility/appropriateness of some questions. Analysis identified four global themes: (1) reinforcement of known benefits of question prompt lists, (2) appraisal of content and suggestions for further developments, (3) perceived benefits and challenges in using the question prompt list and (4) contrasts in Australian/US feedback. These contrasts necessitated distinct Australian/US final versions of the question prompt list. CONCLUSIONS: Participants endorsed the question prompt list as acceptable and useful. Feedback resulted in two distinct versions of the question prompt list, accommodating differences between Australian and US approaches to end-of-life discussions, highlighting the appropriateness of tailoring communication aides to individual populations.
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Planejamento Antecipado de Cuidados , Neoplasias/psicologia , Cuidados Paliativos , Participação do Paciente , Sistemas de Alerta/instrumentação , Idoso , Idoso de 80 Anos ou mais , Austrália , Barreiras de Comunicação , Comparação Transcultural , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/diagnóstico , Neoplasias/terapia , Relações Médico-Paciente , Prognóstico , Pesquisa Qualitativa , Estados UnidosRESUMO
BACKGROUND: Empirical evidence suggests data and insights from the clinical practice guidelines and clinical quality registries are not being fully utilised, leaving health service managers, clinicians and providers without clear guidance on how best to improve healthcare delivery. This lack of uptake of existing research knowledge represents low value to the healthcare system and needs to change. METHODS: Five electronic databases (MEDLINE, Embase, CINAHL, Cochrane Central and Cochrane Database of Systematic Reviews) were systematically searched. Included studies were published between 2000 and 2020 reporting on the attributes, evidence usage and impact of clinical practice guidelines and clinical quality registries on health service delivery. RESULTS: Twenty-six articles including one randomised controlled trial, eight before-and-after studies, eight case studies/reviews, five surveys and four interview studies, covering a wide range of medical conditions and conducted in the USA, Australia and Europe, were identified. Five complementary strategies were derived to maximise the likelihood of best practice health service delivery: (1) feedback and transparency, (2) intervention sustainability, (3) clinical practice guideline adherence, (4) productive partnerships and (5) whole-of-team approach. CONCLUSION: These five strategies, used in context-relevant combinations, are most likely to support the application of existing high-quality data, adding value to health service delivery. The review highlighted the limitations of study design in opportunistic registry studies that do not produce clear, usable evidence to guide changes to health service implementation practices. Recommendations include exploration of innovative methodologies, improved coordination of national registries and the use of incentives to encourage guideline adherence and wider dissemination of strategies used by successful registries.
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Fidelidade a Diretrizes , Serviços de Saúde , Humanos , Atenção à Saúde , Sistema de RegistrosRESUMO
The anterior insula has been hypothesized to provide a link between attention-related problem solving and salience systems during the coordination and evaluation of task performance. Here, we test the hypothesis that the anterior insula/medial frontal operculum (aI/fO) provides linkage across systems supporting task demands and attention systems by examining the patterns of functional connectivity during word recognition and spatial attention functional imaging tasks. A shared set of frontal regions (right aI/fO, right dorsolateral prefrontal cortex, bilateral anterior cingulate) were engaged, regardless of perceptual domain (auditory or visual) or mode of response (word production or button press). We present novel evidence that: (1) the right aI/fO is functionally connected with other frontal regions implicated in executive function and not just brain regions responsive to stimulus salience; and (2) that the aI/fO, but not the ACC, exhibits significantly correlated activity with other brain regions specifically engaged by tasks with varying perceptual and behavioral demands. These results support the hypothesis that the right aI/fO aids in the coordination and evaluation of task performance across behavioral tasks with varying perceptual and response demands.
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Atenção/fisiologia , Lateralidade Funcional , Lobo Parietal/fisiologia , Lobo Temporal/fisiologia , Adulto , Encéfalo/fisiologia , Mapeamento Encefálico , Feminino , Humanos , Masculino , Vias Neurais/fisiologia , Testes Neuropsicológicos , Reconhecimento Fisiológico de Modelo/fisiologia , Percepção Espacial/fisiologia , Percepção da Fala/fisiologia , Percepção Visual/fisiologiaRESUMO
Speech recognition can be difficult and effortful for older adults, even for those with normal hearing. Declining frontal lobe cognitive control has been hypothesized to cause age-related speech recognition problems. This study examined age-related changes in frontal lobe function for 15 clinically normal hearing adults (21-75 years) when they performed a word recognition task that was made challenging by decreasing word intelligibility. Although there were no age-related changes in word recognition, there were age-related changes in the degree of activity within left middle frontal gyrus (MFG) and anterior cingulate (ACC) regions during word recognition. Older adults engaged left MFG and ACC regions when words were most intelligible compared to younger adults who engaged these regions when words were least intelligible. Declining gray matter volume within temporal lobe regions responsive to word intelligibility significantly predicted left MFG activity, even after controlling for total gray matter volume, suggesting that declining structural integrity of brain regions responsive to speech leads to the recruitment of frontal regions when words are easily understood.
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Envelhecimento/fisiologia , Córtex Auditivo/fisiologia , Giro do Cíngulo/fisiologia , Reconhecimento Psicológico/fisiologia , Percepção da Fala/fisiologia , Adulto , Idoso , Atenção/fisiologia , Feminino , Humanos , Imageamento por Ressonância Magnética , Masculino , Pessoa de Meia-IdadeRESUMO
OBJECTIVES: To i) identify and synthesise evidence published since 2007 regarding the impact of parental cancer on adolescent and young adult offspring, ii) identify methodological and evidence gaps addressed during this period and iii) highlight those requiring further attention. DESIGN: A systematic review and thematic synthesis of peer reviewed literature regarding the impact of parental cancer upon AYA offspring. DATA SOURCES: Online searches of CINAHL, Embase, Medline, PsychInfo and Scopus databases were conducted. Reference lists of included articles were screened and additional searches by prominent authors were performed. REVIEW METHODS: Study selection, data extraction and quality analysis was undertaken by three independent researchers. Extracted study data was iteratively reviewed and discussed to achieve consensus regarding thematic synthesis of included studies. RESULTS: Database and hand-searching yielded 1730 articles, 54 of which were included in the final synthesis. Included studies are discussed with respect to the following themes: i) study design and quality; ii) measurement and sampling; iii) positive and negative aspects of parental cancer; iv) needs; v) communication and information; vi) coping strategies; vii) interventions; and viii) family functioning and other predictors. Twenty-nine studies reported negative impacts related to parental cancer, while eight identified positive outcomes related to post-traumatic growth. Five returned null or mixed findings. Unmet needs were frequently explored and a new validated measure developed. Communication and information were particularly important for offspring, though these needs were often unmet and parents wanted guidance regarding discussions with their children. Offspring may adopt a variety of coping strategies, some of which appear maladaptive, and may cycle between different approaches. Few evaluations of interventions were identified, and further work in this area is needed. Further evidence has emerged that poorer family functioning and other family and illness-related factors predict worse psychosocial outcomes for offspring, however evidence for other predictors such as age and gender remain mixed. CONCLUSIONS: Additional evidence for the negative psychosocial impact of parental cancer on adolescent and young adult offspring, their needs, and factors predicting psychosocial outcomes has emerged in the last decade. However, substantial gaps and methodological issues remain and evidence for the development, efficacy or implementation of interventions for this population is very limited. There is also a clear need for greater focus on bereaved and young adult offspring and those from non-western cultural groups, who remain under-represented in research conducted to date.
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Neoplasias/psicologia , Núcleo Familiar/psicologia , Pais , Adaptação Psicológica , Adolescente , Adulto , Austrália , Criança , Estudos Transversais , Humanos , Adulto JovemRESUMO
BACKGROUND: Patients are often not given the information needed to understand their prognosis and make informed treatment choices, with many consequently experiencing less than optimal care and quality-of-life at end-of-life. OBJECTIVES: To evaluate the efficacy of a nurse-facilitated communication support program for patients with advanced, incurable cancer to assist them in discussing prognosis and end-of-life care. DESIGN: A parallel-group randomised controlled trial design was used. SETTINGS: This trial was conducted at six cancer treatment centres affiliated with major hospitals in Sydney, Australia. PARTICIPANTS: 110 patients with advanced, incurable cancer participated. METHODS: The communication support program included guided exploration of a question prompt list, communication challenges, patient values and concerns and the value of discussing end-of-life care early, with oncologists cued to endorse question-asking and question prompt list use. Patients were randomised after baseline measure completion, a regular oncology consultation was audio-recorded and a follow-up questionnaire was completed one month later. Communication, health-related quality-of-life and satisfaction measures and a manualised consultation-coding scheme were used. Descriptive, Mixed Modelling and Generalised Linear Mixed Modelling analyses were conducted using SPSS version 22. RESULTS: Communication support program recipients gave significantly more cues for discussion of prognosis, end-of-life care, future care options and general issues not targeted by the intervention during recorded consultations, but did not ask more questions about these issues or overall. Oncologists' question prompt list and question asking endorsement was inconsistent. Communication support program recipients' self-efficacy in knowing what questions to ask their doctor significantly improved at follow-up while control arm patients' self-efficacy declined. The communication support program did not impact patients' health-related quality-of-life or the likelihood that their health information or shared decision-making preferences would be met. Satisfaction with the communication support program was high. CONCLUSIONS: Given the importance of clarifying prognostic expectations and end-of-life care wishes in the advanced cancer context, the communication support program appears to be an effective and well-received solution to encourage early information seeking related to these issues though, its long-term impact remains unclear. The manualised nature of the intervention, designed with existing clinical staff in mind, may make it suited for implementation in a clinical setting, though additional work is needed to identify why question asking was unaffected and establish its impact later in the illness trajectory.
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Institutos de Câncer/organização & administração , Cuidadores , Expectativa de Vida , Relações Enfermeiro-Paciente , Recursos Humanos de Enfermagem , Assistência Terminal , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/enfermagem , New South WalesRESUMO
Purpose To build on results of a cluster randomized controlled trial (RCT) of a combined patient-oncologist intervention to improve communication in advanced cancer, we conducted a post hoc analysis of the patient intervention component, a previsit patient coaching session that used a question prompt list (QPL). We hypothesized that intervention-group participants would bring up more QPL-related topics, particularly prognosis-related topics, during the subsequent oncologist visit. Patients and Methods This cluster RCT with 170 patients who had advanced nonhematologic cancer (and their caregivers) recruited from practices of 24 participating oncologists in western New York. Intervention-group oncologists (n = 12) received individualized communication training; up to 10 of their patients (n = 84) received a previsit individualized communication coaching session that incorporated a QPL. Control-group oncologists (n = 12) and patients (n = 86) received no interventions. Topics of interest identified by patients during the coaching session were summarized from coaching notes; one office visit after the coaching session was audio recorded, transcribed, and analyzed by using linear regression modeling for group differences. Results Compared with controls, more than twice as many intervention-group participants brought up QPL-related topics during their office visits (70.2% v 32.6%; P < .001). Patients in the intervention group were nearly three times more likely to ask about prognosis (16.7% v 5.8%; P =.03). Of 262 topics of interest identified during coaching, 158 (60.3%) were QPL related; 20 (12.7%) addressed prognosis. Overall, patients in the intervention group brought up 82.4% of topics of interest during the office visit. Conclusion A combined coaching and QPL intervention was effective to help patients with advanced cancer and their caregivers identify and bring up topics of concern, including prognosis, during their subsequent oncologist visits. Considering that most patients are misinformed about prognosis, more intensive steps are needed to better promote such discussions.
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Comunicação , Neoplasias/psicologia , Neoplasias/terapia , Oncologistas/psicologia , Relações Médico-Paciente , Assistência Terminal/métodos , Assistência Terminal/psicologia , Adulto , Planejamento Antecipado de Cuidados , Idoso , Atitude Frente a Morte , Feminino , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
IMPORTANCE: Observational studies demonstrate links between patient-centered communication, quality of life (QOL), and aggressive treatments in advanced cancer, yet few randomized clinical trials (RCTs) of communication interventions have been reported. OBJECTIVE: To determine whether a combined intervention involving oncologists, patients with advanced cancer, and caregivers would promote patient-centered communication, and to estimate intervention effects on shared understanding, patient-physician relationships, QOL, and aggressive treatments in the last 30 days of life. DESIGN, SETTING, AND PARTICIPANTS: Cluster RCT at community- and hospital-based cancer clinics in Western New York and Northern California; 38 medical oncologists (mean age 44.6 years; 11 (29%) female) and 265 community-dwelling adult patients with advanced nonhematologic cancer participated (mean age, 64.4 years, 146 [55.0%] female, 235 [89%] white; enrolled August 2012 to June 2014; followed for 3 years); 194 patients had participating caregivers. INTERVENTIONS: Oncologists received individualized communication training using standardized patient instructors while patients received question prompt lists and individualized communication coaching to identify issues to address during an upcoming oncologist visit. Both interventions focused on engaging patients in consultations, responding to emotions, informing patients about prognosis and treatment choices, and balanced framing of information. Control participants received no training. MAIN OUTCOMES AND MEASURES: The prespecified primary outcome was a composite measure of patient-centered communication coded from audio recordings of the first oncologist visit following patient coaching (intervention group) or enrollment (control). Secondary outcomes included the patient-physician relationship, shared understanding of prognosis, QOL, and aggressive treatments and hospice use in the last 30 days of life. RESULTS: Data from 38 oncologists (19 randomized to intervention) and 265 patients (130 intervention) were analyzed. In fully adjusted models, the intervention resulted in clinically and statistically significant improvements in the primary physician-patient communication end point (adjusted intervention effect, 0.34; 95% CI, 0.06-0.62; P = .02). Differences in secondary outcomes were not statistically significant. CONCLUSIONS AND RELEVANCE: A combined intervention that included oncologist communication training and coaching for patients with advanced cancer was effective in improving patient-centered communication but did not affect secondary outcomes. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT01485627.
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Neoplasias/epidemiologia , Neoplasias/terapia , Assistência Centrada no Paciente , Relações Médico-Paciente , Adulto , Idoso , Cuidadores/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estadiamento de Neoplasias , Neoplasias/patologia , Neoplasias/psicologia , Oncologistas/psicologia , Aceitação pelo Paciente de Cuidados de Saúde , Participação do Paciente , Qualidade de VidaRESUMO
OBJECTIVE: To identify and synthesise evidence for interventions targeting end-of-life communication. METHODS: Database, reference list and author searches were conducted to identify evaluations of end-of-life communication-focussed interventions. Data were extracted, synthesised and QUALSYST quality analyses were performed. RESULTS: Forty-five studies met inclusion criteria. Interventions targeted patients (n=6), caregivers (n=3), healthcare professionals (HCPs n=24) and multiple stakeholders (n=12). Interventions took various forms including communication skills training, education, advance care planning and structured practice changes. Substantial heterogeneity in study designs, outcomes, settings and measures was apparent and study quality was variable. CONCLUSION: A substantial number of end-of-life communication interventions have been evaluated. Interventions have particularly targeted HCPs in cancer settings, though patient, caregiver and multi-focal interventions have also been evaluated. While some interventions were efficacious in well-designed RCTs, most evidence was from less robust studies. While additional interventions targeting patients and caregivers are needed, multi-focal interventions may more effectively remove barriers to end-of-life communication. PRACTICE IMPLICATIONS: Despite the limitations evident in the existing literature, healthcare professionals may still derive useful insights into effective approaches to end-of-life communication if appropriate caution is exercised. However, additional RCTs, implementation studies and cost-benefit analyses are required to bolster arguments for implementing and resourcing communication interventions.
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Planejamento Antecipado de Cuidados , Comunicação , Assistência Terminal , Diretivas Antecipadas , Cuidadores , Pessoal de Saúde , HumanosRESUMO
OBJECTIVE: The objective of this study was to provide insight into how advanced cancer patients and their caregivers use a Question Prompt List (QPL) during a consultation and for preparation for future consultations. METHODS: Audiotaped consultations and follow-up phone calls of 28 advanced cancer patients were coded and content analyzed. Questions asked and concerns expressed in consultations were coded for initiator, content, inclusion in the QPL and exact wording. Patients' reported and future use of the QPL were coded from the phone calls. RESULTS: The majority of patients reported that they used the QPL. Questions asked by patients and caregivers predominately coincided with questions from the prognosis section of the QPL. Questions were rarely asked literally from the QPL, instead questions were tailored to patients' own circumstances. CONCLUSION: QPLs are useful to stimulate discussion on prognosis among advanced cancer patients and caregivers. Patients tailored questions from the QPL to their own circumstances which may suggest high involvement and engagement. The development of more specific tailored communication interventions for advanced cancer patients is warranted. PRACTICE IMPLICATIONS: Implementation of QPLs in the advanced cancer setting may be beneficial for patients, caregivers and healthcare providers to facilitate discussion of topics such as prognosis.
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Planejamento Antecipado de Cuidados , Cuidadores/psicologia , Comunicação , Neoplasias , Participação do Paciente , Encaminhamento e Consulta , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Neoplasias/terapia , Relações Médico-Paciente , Prognóstico , Sistemas de Alerta/instrumentação , Índice de Gravidade de Doença , Inquéritos e Questionários , Gravação em FitaRESUMO
INTRODUCTION: Timely communication about life expectancy and end-of-life care is crucial for ensuring good patient quality-of-life at the end of life and a good quality of death. This article describes the protocol for a multisite randomised controlled trial of a nurse-led communication support programme to facilitate patients' and caregivers' efforts to communicate about these issues with their healthcare team. METHODS AND ANALYSIS: This NHMRC-sponsored trial is being conducted at medical oncology clinics located at/affiliated with major teaching hospitals in Sydney, Australia. Patients with advanced, incurable cancer and life expectancy of less than 12â months will participate together with their primary informal caregiver where possible. Guided by the self-determination theory of health-behaviour change, the communication support programme pairs a purpose-designed Question Prompt List (QPL-an evidence-based list of questions patients/caregivers can ask clinicians) with nurse-led exploration of QPL content, communication challenges, patient values and concerns and the value of early discussion of end-of-life issues. Oncologists are also cued to endorse patient and caregiver question asking and use of the QPL. Behavioural and self-report data will be collected from patients/caregivers approximately quarterly for up to 2.5â years or until patient death, after which patient medical records will be examined. Analyses will examine the impact of the intervention on patients' and caregivers' participation in medical consultations, their self-efficacy in medical encounters, quality-of-life, end-of-life care receipt and quality-of-death indicators. ETHICS AND DISSEMINATION: Approvals have been granted by the human ethics review committee of Royal Prince Alfred Hospital and governance officers at each participating site. Results will be reported in peer-reviewed publications and conference presentations. TRIAL REGISTRATION NUMBER: Australian New Zealand Clinical Trials Registry ACTRN12610000724077.
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Cuidadores , Comunicação , Neoplasias/enfermagem , Pacientes , Assistência Terminal , Humanos , Prognóstico , Projetos de PesquisaRESUMO
OBJECTIVE: To explore patients' perspectives across two cultures (Australia and USA) regarding communication about prognosis and end-of-life care issues and to consider the ways in which these discussions can be optimised. METHODS: Fifteen Australian and 11 US patients completed individual semi-structured qualitative interviews. A further 8 US patients participated in a focus group. Interviews and focus group recordings were transcribed verbatim and interpreted using thematic text analysis with an inductive, data-driven approach. RESULTS: Global themes identified included readiness for and outcomes of discussions of prognosis and end-of-life issues. Contributing to readiness were sub themes including patients' adjustment to and acceptance of their condition (together with seven factors promoting this), doctor and patient communication skills, mutual understandings and therapeutic relationship elements. Outcomes included sub themes of achievement of control and ability to move on. A model of the relationships between these factors, emergent cross cultural differences, and how factors may help to optimise these discussions are presented. CONCLUSION: Identified optimising factors illustrate Australian and US patients' perspectives regarding how prognosis and end-of-life issues can be discussed with minimised negative impact. PRACTICE IMPLICATIONS: Recognition of factors promoting adjustment, acceptance and readiness and use of the communication skills and therapeutic relationship elements identified may assist in optimising discussions and help patients plan care, achieve more control of their situation and enjoy an optimal quality-of-life.
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Comunicação , Pacientes/psicologia , Relações Médico-Paciente , Assistência Terminal/psicologia , Doente Terminal/psicologia , Idoso , Idoso de 80 Anos ou mais , Austrália , Aconselhamento , Comparação Transcultural , Feminino , Grupos Focais , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Prognóstico , Qualidade de Vida , Resultado do Tratamento , Estados UnidosRESUMO
The planum temporale is a region on the posterior surface of the temporal lobe that exhibits robust leftward structural asymmetry, which has been linked to verbal ability in children and adults. Traditionally, structural asymmetry has been quantified with manual assessment of high resolution MRI scans. Such measures require subjective and frequently unreliable determination of highly variable anatomical boundaries. Methodological developments in automated image processing (voxel-based morphometry - VBM) offer the opportunity to obtain objective and reliable measures of structural variation. This study examined the extent to which a VBM measure of gray matter asymmetry in the posterior superior temporal gyrus (pSTG) characterized the same individual variation as a manual measure of planum temporale asymmetry in 99 healthy adults and 39 typically developing children. Planum temporale asymmetry was significantly correlated with pSTG gray matter asymmetry in the samples of adults and children. As a measure of validity we examined the extent to which the VBM measure of pSTG gray matter asymmetry predicted measures of verbal ability that were associated with the manual measure of planum temporale asymmetry in the same children. The two asymmetry measures predicted the same variance in verbal ability. The automated measure of pSTG gray matter asymmetry predicted additional significant variance in verbal ability, however. In addition, a posterior STS region was also identified that significantly predicted verbal ability. These results demonstrate significant advantages of an automated voxel-based measure over a manual measure of planum temporale asymmetry.