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1.  Everybody wants it done but nobody wants to do it: an exploration of the barrier and enablers of critical components towards creating a clinical pathway for anxiety and depression in cancer 
Background
This study aimed to explore barriers to and enablers for future implementation of a draft clinical pathway for anxiety and depression in cancer patients in the Australian context.
Methods
Health professionals reviewed a draft clinical pathway and participated in qualitative interviews about the delivery of psychosocial care in their setting, individual components of the draft pathway, and barriers and enablers for its future implementation.
Results
Five interrelated themes were identified: ownership; resources and responsibility; education and training; patient reluctance; and integration with health services beyond oncology.
Conclusions
The five themes were perceived as both barriers and enablers and provide a basis for an implementation plan that includes strategies to overcome barriers. The next steps are to design and deliver the clinical pathway with specific implementation strategies that address team ownership, endorsement by leaders, education and training modules designed for health professionals and patients and identify ways to integrate the pathway into existing cancer services.
doi:10.1186/s12913-015-0691-9
PMCID: PMC4307637  PMID: 25608947
Cancer; Oncology; Critical pathway; Barrier analysis; Anxiety; Depression
2.  Hope, Quality of Life, and Benefit From Treatment in Women Having Chemotherapy for Platinum-Resistant/Refractory Recurrent Ovarian Cancer: The Gynecologic Cancer Intergroup Symptom Benefit Study 
The Oncologist  2013;18(11):1221-1228.
Chemotherapy for platinum-resistant/refractory ovarian cancer is motivated by the hope of benefit. Trait hope and expectation of symptom benefit from chemotherapy appear to be distinct and independent of quality of life and depression. Hope did not appear to affect perceived efficacy of chemotherapy in alleviating symptoms, but women whose expectation of symptom benefit from chemotherapy was not fulfilled were more likely to have scores indicative of depression.
Learning Objectives
Explain the connection between depression and unrealistic expectations of the benefits of palliative therapy.Distinguish the trait of general hopefulness from hope for a specific favorable outcome.
Purpose.
Chemotherapy for platinum-resistant/refractory ovarian cancer is motivated by the hope of benefit. We sought to determine the relationships between: (a) trait hope, expectation of symptom benefit from chemotherapy, and anxiety and depression; (b) hope and perceived efficacy of chemotherapy; and (c) unfulfilled hope (where expectations for benefit are not fulfilled) and depression.
Methods.
Adult patients enrolled within stage 1 of the Gynecologic Cancer Intergroup Symptom Benefit Study were included.
Patient.
Reported outcomes were collected from 126 women with predominantly platinum-resistant ovarian cancer at baseline, prior to the first four treatment cycles (12–16 weeks), and four weeks after completing chemotherapy or at disease progression, whichever came first. Associations were assessed with Spearman rank correlation coefficient (r) and odds ratio.
Results.
Trait hope and expectation of symptom benefit from chemotherapy were weakly correlated with each other (r = 0.25). Trait hope, but not expectation of symptom benefit, was negatively correlated with anxiety (r = −0.43) and depression (r = −0.50). The smaller the discrepancy between perceived and expected symptom benefit, the less likely the patient was to have scores indicative of depression (odds ratio: 0.68; 95% confidence interval: 0.49–0.96; p = .026).
Conclusion.
Trait hope and expectation of symptom benefit from chemotherapy appear to be distinct and independent of the aspects of quality of life and scores for depression. Hope did not appear to affect perceived efficacy of chemotherapy in alleviating symptoms, but women whose expectation of symptom benefit from chemotherapy was not fulfilled were more likely to have scores indicative of depression. It may be preferable to encourage hope toward achievable goals rather than toward benefits from chemotherapy.
doi:10.1634/theoncologist.2013-0175
PMCID: PMC3825308  PMID: 24107972
Recurrent ovarian cancer; Symptoms; Hope; Symptom benefit; Chemotherapy
3.  Discussing prognosis and end-of-life care in the final year of life: a randomised controlled trial of a nurse-led communication support programme for patients and caregivers 
BMJ Open  2014;4(6):e005745.
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 12 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 2.5 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.
doi:10.1136/bmjopen-2014-005745
PMCID: PMC4078787  PMID: 24969786
Communication; Cancer; End-of-life care; Advance care planning; Question prompt list; Caregivers
4.  Cancer Patient Disclosure and Patient-Doctor Communication of Complementary and Alternative Medicine Use: A Systematic Review 
The Oncologist  2012;17(11):1475-1481.
This article explores the nondisclosure of complementary and alternative medicine use among cancer patients, including reasons for and outcomes from nondisclosure, within the context of patient-doctor communication.
Learning Objectives
After completing this course, the reader will be able to: Discuss the danger inherent in nondisclosure of complementary and alternative medicine (CAM) use due to the potential for herb- or vitamin-drug interactions with conventional treatment.Explain the need for greater patient-doctor communication about CAM use in oncology settings in order to maintain patient safety and wellbeing.
This article is available for continuing medical education credit at CME.TheOncologist.com
Objective.
To explore the nondisclosure of complementary and alternative medicine (CAM) use among cancer patients, including reasons for and outcomes from nondisclosure of CAM use, within the context of patient-doctor communication.
Method.
A systematic review was conducted exploring investigations surrounding the communication of CAM use for patients with cancer published until August 2011.
Results.
A total of 21 studies were located, which reported a prevalence of CAM use among patients with cancer ranging between 11% and 95%; of these patients, 20% to 77% did not disclose their CAM use. The main reasons for nondisclosure were the doctor's lack of inquiry; patient's anticipation of the doctor's disapproval, disinterest, or inability to help; and patient's perception that disclosure of CAM use is irrelevant to their conventional care. There is some evidence to suggest that patient-doctor communication about the use of CAM was associated with an enhanced patient-doctor relationship and higher patient satisfaction.
Conclusions.
Although the use of CAM by patients with cancer is high, patients frequently fail to disclose its use to their health professionals for reasons emanating from both sides of the dyadic patient-doctor relationship. Because a substantial proportion of patients with cancer may use CAM and there is potential for herb- or vitamin-drug interactions, further research in patient-doctor communication about CAM is necessary to maintain patient safety and wellbeing. The development of effective interventions to improve the disclosure of CAM use should be an integral part of this future research.
doi:10.1634/theoncologist.2012-0223
PMCID: PMC3500370  PMID: 22933591
Complementary and alternative medicine; Cancer; Disclosure; Doctor-patient relations
5.  Conquer fear: protocol of a randomised controlled trial of a psychological intervention to reduce fear of cancer recurrence 
BMC Cancer  2013;13:201.
Background
Up to 70% of cancer survivors report clinically significant levels of fear of cancer recurrence (FCR). Despite the known negative impact of FCR on psychological wellbeing and quality of life, little research has investigated interventions for high FCR. Our team has developed and piloted a novel intervention (Conquer Fear) based on the Self-Regulatory Executive Function Model and Relational Frame Theory and is evaluating Conquer Fear in a randomised controlled trial (RCT). We aim to compare the efficacy and cost-efficacy of the Conquer Fear Intervention and relaxation training in reducing the impact of FCR.
Methods/design
This study is a multi-centre RCT with 260 participants randomised either to the Conquer Fear Intervention or relaxation training. Both interventions will be delivered in five sessions over 10 weeks by trained psychologists, psychiatrists and social workers with five or more years experience in oncology. Conquer Fear sessions use attentional training, detached mindfulness, meta-cognitive therapy, values clarification and psycho-education to help patients change the way they regulate and respond to thoughts about cancer recurrence. Relaxation training includes training in progressive and passive muscle relaxation, meditative relaxation, visualisation and “quick relaxation” techniques. Relaxation was chosen to control for therapist time and attention and has good face-validity as an intervention. The primary outcome is fear of cancer recurrence. Secondary outcomes include distress, quality of life, unmet needs, and health care utilisation. Participants complete questionnaires prior to starting the intervention, immediately after completing the intervention, 3 and 6 months later. Eligible participants are early-stage breast or colorectal cancer survivors who have completed hospital-based treatment between 2 months and 5 years prior to study entry and report a score in the clinical range on the Fear of Cancer Recurrence Inventory. The biostatistician is blinded to group allocation and participants are blinded to which intervention is being evaluated. Randomisation is computer generated, stratified by therapist, and uses sequentially numbered sealed envelopes.
Discussion
If successful, the study will provide an evidence-based intervention to reduce psychological morbidity in cancer survivors, and reduce overall health care costs due to more appropriate use of follow-up care and other health services in this very large population.
Trial registration
Trial registration: ACTRN12612000404820
doi:10.1186/1471-2407-13-201
PMCID: PMC3652728  PMID: 23617696
Fear of cancer recurrence; Cancer; Oncology; RCT; S-REF model; Intervention; Metacognition; Detached mindfulness
6.  Values and options in cancer care (VOICE): study design and rationale for a patient-centered communication and decision-making intervention for physicians, patients with advanced cancer, and their caregivers 
BMC Cancer  2013;13:188.
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
doi:10.1186/1471-2407-13-188
PMCID: PMC3637237  PMID: 23570278
Patient-centered care; Decision making; End-of-life care; Communication; Caregivers; Cancer; Palliative care; Quality of life; Utilization; Physician-patient relations
7.  Measuring cancer care coordination: development and validation of a questionnaire for patients 
BMC Cancer  2011;11:298.
Background
Improving the coordination of cancer care is a priority area for service improvement. However, quality improvement initiatives are hindered by the lack of accurate and reliable measures of this aspect of cancer care. This study was conducted to develop a questionnaire to measures patients' experience of cancer care coordination and to assess the psychometric properties of this instrument.
Methods
Questionnaire items were developed on the basis of literature review and qualitative research involving focus groups and interviews with cancer patients, carers and clinicians. The draft instrument was completed 686 patients who had been recently treated for a newly diagnosed cancer, including patients from metropolitan, regional and rural areas of New South Wales, Australia. To assess test-retest reliability, 119 patients completed the questionnaire twice. Unreliable items those with limited variability or high levels of missing data were eliminated. Exploratory factor analysis was conducted to define the underlying factor structure of the remaining items and subscales were constructed. Correlations between these and global measures of the experience of care coordination and the quality of care were assessed.
Results
Of 40 items included in the draft questionnaire, 20 were eliminated due to poor test-retest reliability (n = 4), limited response distributions (n = 8), failure to load onto a factor (n = 7) or detrimental effect on the internal consistency of the scale (n = 1). The remaining 20 items loaded onto two factors named 'Communication' and 'Navigation', which explained 91% of the common variance. Internal consistency was with high for the instrument (Cronbach's alpha 0.88) and each subscale (Cronbach's alpha 0.87 and 0.73 respectively). There was no apparent 'floor' or 'ceiling' effect for the total score or the Communication subscale, but evidence of a ceiling effect for the Navigation subscale with 21% of respondents achieving the highest possible score. There were moderate positive associations between the total score and global measures of care coordination (r = 0.57) and quality of care (r = 0.53).
Conclusions
The instrument developed in this study demonstrated consistency and robust psychometric properties. It may provide a useful tool to measure patients' experience of cancer care coordination in future surveys and intervention studies.
doi:10.1186/1471-2407-11-298
PMCID: PMC3151230  PMID: 21756360
cancer; coordination of cancer care; questionnaire; psychometrics
8.  Consumer input into research: the Australian Cancer Trials website 
Background
The Australian Cancer Trials website (ACTO) was publicly launched in 2010 to help people search for cancer clinical trials recruiting in Australia, provide information about clinical trials and assist with doctor-patient communication about trials. We describe consumer involvement in the design and development of ACTO and report our preliminary patient evaluation of the website.
Methods
Consumers, led by Cancer Voices NSW, provided the impetus to develop the website. Consumer representative groups were consulted by the research team during the design and development of ACTO which combines a search engine, trial details, general information about trial participation and question prompt lists. Website use was analysed. A patient evaluation questionnaire was completed at one hospital, one week after exposure to the website.
Results
ACTO's main features and content reflect consumer input. In February 2011, it covered 1, 042 cancer trials. Since ACTO's public launch in November 2010, until the end of February 2011, the website has had 2, 549 new visits and generated 17, 833 page views. In a sub-study of 47 patient users, 89% found the website helpful for learning about clinical trials and all respondents thought patients should have access to ACTO.
Conclusions
The development of ACTO is an example of consumers working with doctors, researchers and policy makers to improve the information available to people whose lives are affected by cancer and to help them participate in their treatment decisions, including consideration of clinical trial enrolment. Consumer input has ensured that the website is informative, targets consumer priorities and is user-friendly. ACTO serves as a model for other health conditions.
doi:10.1186/1478-4505-9-30
PMCID: PMC3141790  PMID: 21703017
9.  What are the current barriers to effective cancer care coordination? A qualitative study 
Background
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.
Methods
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.
Results
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.
Conclusions
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.
doi:10.1186/1472-6963-10-132
PMCID: PMC2891740  PMID: 20482884
10.  Provision of taped conversations with neonatologists to mothers of babies in intensive care: randomised controlled trial 
BMJ : British Medical Journal  2006;334(7583):28.
Objective To determine whether providing mothers of babies in neonatal intensive care units with audiotapes of their conversations with a neonatologist improves recall of information and psychological wellbeing.
Design Randomised, single blinded trial.
Setting Neonatal intensive care unit, North Queensland, Australia.
Participants 200 mothers of babies in a neonatal intensive care unit.
Interventions Mothers given (n=102) or not given (n=98) audiotapes of their conversations with a neonatologist.
Main outcome measures Recall of information, attitudes to and use of the tape, satisfaction with conversations, postnatal depression, anxiety, general health, and stress about parenting, at 10 days and four and 12 months.
Results 91% (n=93) of mothers in the tape group listened to the tape (once by day 10, twice by four months, and three times by 12 months; range 1-10). At 10 days and four months, mothers in the tape group recalled significantly more information about diagnosis, treatment, and outcome than mothers in the control group. At four months mothers in the tape group were 75% more likely to recall all of the information about treatment than mothers in the control group (59% v 34%; risk ratio 1.75, 95% confidence interval 1.27 to 2.4). Six mothers, all in the control group, could not recall their conversations. No statistically significant differences were found between the groups in satisfaction with conversations (10 days), postnatal depression and anxiety scores (10 days, four and 12 months), and stress about parenting (12 months).
Conclusion Providing the mothers of babies in neonatal intensive care units with audiotapes of conversations with a neonatologist enhanced their recall of information (up to four months). The taped conversations did not affect the mothers' wellbeing or satisfaction with the neonatologist.
Trial registration Australian Clinical Trials Registry 12606000478516.
doi:10.1136/bmj.39017.675648.BE
PMCID: PMC1764090  PMID: 17142256
11.  Analysis of cancer risk and BRCA1 and BRCA2 mutation prevalence in the kConFab familial breast cancer resource 
Breast Cancer Research  2006;8(1):R12.
Introduction
The Kathleen Cuningham Foundation Consortium for Research into Familial Breast Cancer (kConFab) is a multidisciplinary, collaborative framework for the investigation of familial breast cancer. Based in Australia, the primary aim of kConFab is to facilitate high-quality research by amassing a large and comprehensive resource of epidemiological and clinical data with biospecimens from individuals at high risk of breast and/or ovarian cancer, and from their close relatives.
Methods
Epidemiological, family history and lifestyle data, as well as biospecimens, are collected from multiple-case breast cancer families ascertained through family cancer clinics in Australia and New Zealand. We used the Tyrer-Cuzick algorithms to assess the prospective risk of breast cancer in women in the kConFab cohort who were unaffected with breast cancer at the time of enrolment in the study.
Results
Of kConFab's first 822 families, 518 families had multiple cases of female breast cancer alone, 239 had cases of female breast and ovarian cancer, 37 had cases of female and male breast cancer, and 14 had both ovarian cancer as well as male and female breast cancer. Data are currently held for 11,422 people and germline DNAs for 7,389. Among the 812 families with at least one germline sample collected, the mean number of germline DNA samples collected per family is nine. Of the 747 families that have undergone some form of mutation screening, 229 (31%) carry a pathogenic or splice-site mutation in BRCA1 or BRCA2. Germline DNAs and data are stored from 773 proven carriers of BRCA1 or BRCA1 mutations. kConFab's fresh tissue bank includes 253 specimens of breast or ovarian tissue – both normal and malignant – including 126 from carriers of BRCA1 or BRCA2 mutations.
Conclusion
These kConFab resources are available to researchers anywhere in the world, who may apply to kConFab for biospecimens and data for use in ethically approved, peer-reviewed projects. A high calculated risk from the Tyrer-Cuzick algorithms correlated closely with the subsequent occurrence of breast cancer in BRCA1 and BRCA2 mutation positive families, but this was less evident in families in which no pathogenic BRCA1 or BRCA2 mutation has been detected.
doi:10.1186/bcr1377
PMCID: PMC1413975  PMID: 16507150

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