Discussing prognosis and end-of-life care in the final year of life: A randomized controlled trial of a nurse-led ommunication support programme for patients and caregivers

Introduction: Timely communication about lifeexpectancy and end-of-life care is crucial forensuring good patient quality-of-life at the end of lifeand a good quality of death. This article describes theprotocol for a multisite randomised controlled trial of anurse-led communication support programme tofacilitate patients' and caregivers' efforts tocommunicate about these issues with theirhealthcare team.Methods and analysis: This NHMRC-sponsored trialis being conducted at medical oncology clinics locatedat/affiliated with major teaching hospitals in Sydney,Australia. Patients with advanced, incurable cancer andlife expectancy of less than 12 months will participatetogether with their primary informal caregiver wherepossible. Guided by the self-determination theory ofhealth-behaviour change, the communication supportprogramme pairs a purpose-designed Question PromptList (QPL-an evidence-based list of questionspatients/caregivers can ask clinicians) with nurse-ledexploration of QPL content, communication challenges,patient values and concerns and the value of earlydiscussion of end-of-life issues. Oncologists are alsocued to endorse patient and caregiver question askingand use of the QPL. Behavioural and self-report datawill be collected from patients/caregivers approximatelyquarterly for up to 2.5 years or until patient death, afterwhich patient medical records will be examined.Analyses will examine the impact of the intervention onpatients' and caregivers' participation in medicalconsultations, their self-efficacy in medical encounters,quality-of-life, end-of-life care receipt and quality-ofdeathindicators.Ethics and dissemination: Approvals have beengranted by the human ethics review committee ofRoyal Prince Alfred Hospital and governance officersat each participating site. Results will be reported inpeer-reviewed publications and conferencepresentations.Trial registration number: Australian New ZealandClinical Trials Registry ACTRN12610000724077

Patient perspectives regarding communication about prognosis and end-of-life issues: How can it be optimised?

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. © 2011 Elsevier Ireland Ltd

Advance care planning in patients with incurable cancer: Study protocol for a randomised controlled trial

Introduction: There is limited evidence documenting the effectiveness of Advance Care Planning (ACP) in cancer care. The present randomised trial is designed to evaluate whether the administration of formal ACP improves compliance with patients' end-of-life (EOL) wishes and patient and family satisfaction with care. Methods and analysis: A randomised control trial in eight oncology centres across New South Wales and Victoria, Australia, is designed to assess the efficacy of a formal ACP intervention for patients with cancer. Patients with incurable cancer and an expected survival of 3-12 months, plus a nominated family member or friend will be randomised to receive either standard care or standard care plus a formal ACP intervention. The project sample size is 210 patient-family/friend dyads. The primary outcome measure is family/friendreported: (1) discussion with the patient about their EOL wishes and (2) perception that the patient's EOL wishes were met. Secondary outcome measures include: documentation of and compliance with patient preferences for medical intervention at the EOL; the family/friend's perception of the quality of the patient's EOL care; the impact of death on surviving family; patient-family and patient-healthcare provider communication about EOL care; patient and family/ friend satisfaction with care; quality of life of patient and family/friend subsequent to trial entry, the patient's strength of preferences for quality of life and length of life; the costs of care subsequent to trial entry and place of death. Ethics and dissemination: Ethical approval was received from the Sydney Local Health District (RPA Zone) Human Research Ethical Committee, Australia (Protocol number X13-0064). Study results will be submitted for publication in peer-reviewed journals and presented at national and international conferences. Trial registration number: Pre-results; ACTRN12613001288718

Peer assessment of outpatient consultation letters – feasibility and satisfaction

<p>Abstract</p> <p>Background</p> <p>Written correspondence is one of the most important forms of communication between health care providers, yet there is little feedback provided to specialists. The objective of this study was to determine the feasibility and satisfaction of a peer assessment program on consultation letters and to determine inter-rater reliability between family physicians and specialists.</p> <p>Methods</p> <p>A rating scale of nine 5-point Likert scale items including specific content, style items, education value of the letter and an overall rating was developed from a previous validated tool.</p> <p>Nine Internal Medicine specialists/subspecialists from two tertiary care centres submitted 10 letters with patient and physician identifiers removed. Two Internal Medicine specialists, and 2 family physicians from the other centre rated each letter (to protect writer anonymity). A satisfaction survey was sent to each writer and rater after collation of the results. A follow-up survey was sent 6–8 months later.</p> <p>Results</p> <p>There was a high degree of satisfaction with the process and feedback. The rating scale information was felt to be useful and appropriate for evaluating the quality of consultation letters by 6/7 writers. 5/7 seven writers felt that the feedback they received resulted in immediate changes to their letters. Six months later, 6/9 writers indicated they had maintained changes in their letters.</p> <p>Raters rank ordered letters similarly (Cronbach's alpha 0.57–0.84) but mean scores were highly variant. At site 1 there were significant differences in scoring brevity (p < 0.01) between family physician and specialist raters; whereas, at site 2 there were differences in scoring of history (p < 0.01), physical examination (p < 0.01) and educational value (p < 0.01) of the letter.</p> <p>Conclusion</p> <p>Most participants found peer assessment of letters feasible and beneficial and longstanding changes occurred in some individuals. Family physicians and specialists appear to have different expectations on some items. Further studies on reliability and validity, with a larger sample, are required before high stakes professional assessments include consultation letters.</p

Psychosocial morbidity in TP53 mutation carriers: is whole-body cancer screening beneficial?

Germline TP53 mutation carriers are at high risk of developing a range of cancers. Effective cancer risk management is an important issue for these individuals. We assessed the psychosocial impact in TP53 mutation carriers of WB-MRI screening as part of the Surveillance in Multi-Organ Cancer (SMOC+) protocol, measuring their unmet needs, anxiety and depression levels as well as cancer worry using psychological questionnaires and in-depth interviews about their experiences of screening. We present preliminary psychosocial findings from 17 participants during their first 12 months on the trial. We found a significant reduction in participants' mean anxiety from baseline to two weeks post WB-MRI (1.2, 95% CI 0.17 to 2.23 p = 0.025), indicative of some benefit. Emerging qualitative themes show most participants are emotionally supported and contained by the screening program and are motivated by their immediate concern about staying alive, despite being informed about the current lack of evidence around efficacy of screening for people with TP53 mutations in terms of cancer morbidity or mortality. For those that do gain emotional reassurance from participating in the screening study, feelings of abandonment by the research team are a risk when the study ends. For others, screening was seen as a burden, consistent with the relentless nature of cancer risk associated with Li-Fraumeni syndrome, though these patients still declared they wished to participate due to their concern with staying alive. Families with TP53 mutations need ongoing support due to the impact on the whole family system. These findings suggest a comprehensive multi-organ screening program for people with TP53 mutations provides psychological benefit independent of an impact on cancer morbidity and mortality associated with the syndrome. The benefits of a multi-organ screening program will be greater still if the screening tests additionally reduce the cancer morbidity and mortality associated with the syndrome. These findings may also inform the care of individuals and families with other multi-organ cancer predisposition syndromes

Primary ovarian cancer chemotherapy: current standards of care

Chemotherapy has been regarded as standard therapy for the majority of women with advanced epithelial ovarian cancer for several decades, with this role filled largely by the alkylating agents — used as monotherapy — until the mid-1980s. The activity of cisplatin in this disorder was established during the 1970s, and combinations of cisplatin and an alkylating agent were widely used during the late 1980s. However, further research prompted by continuing concerns over poor survival and tolerability led to the adoption of paclitaxel in combination with either cisplatin or carboplatin as first-line therapy in ovarian cancer during the 1990s. Most recent research has focused on further optimisation of these regimens to maximise clinical benefit while minimising toxicity, and investigations into alternative taxanes (e.g. docetaxel), other novel agents and new treatment schedules are ongoing

What are the current barriers to effective cancer care coordination? A qualitative study

<p>Abstract</p> <p>Background</p> <p>National cancer policies identify the improvement of care coordination as a priority to improve the delivery of health services for people with cancer. Identification of the current barriers to effective cancer care coordination is needed to drive service improvement.</p> <p>Methods</p> <p>A qualitative study was undertaken in which semi-structured individual interviews and focus groups were conducted with those best placed to identify issues; patients who had been treated for a range of cancers and their carers as well as health professionals involved in providing cancer care. Data collection continued until saturation of concepts was reached. A grounded theory influenced approach was used to explore the participants' experiences and views of cancer care coordination.</p> <p>Results</p> <p>Overall, 20 patients, four carers and 29 health professionals participated. Barriers to cancer care coordination related to six aspects of care namely, recognising health professional roles and responsibilities, implementing comprehensive multidisciplinary team meetings, transitioning of care: falling through the cracks, inadequate communication between specialist and primary care, inequitable access to health services and managing scarce resources.</p> <p>Conclusions</p> <p>This study has identified a number of barriers to coordination of cancer care. Development and evaluation of interventions based on these findings is now required.</p