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Background: Growing global demand for palliative care services has prompted generalist clinicians to provide adjunct support to specialist teams. Paramedics are uniquely placed to respond to these patients in the community. However, embedding palliative care principles into their core business will require multifactorial interventions at structural, healthcare service and individual clinician and consumer levels., Aim: To develop a palliative paramedicine framework suitable for national implementation, to standardise best practice in Australia., Design: Delphi study utilising questionnaire completion; each round informed the need for, and content of, the next round. Free text comments were also sought in Round 1. Two rounds of Delphi were undertaken., Setting/participants: Sixty-eight participants took part in Round 1, representing six countries, and 66 in Round 2. Participants included paramedics, palliative care doctors and nurses, general practitioners, researchers and carers with lived experience and expertise in palliative paramedicine., Results: Seventeen of the original 24 components gained consensus; 6 components were modified; and 9 new components arose from Round 1. All modified and new components gained consensus in Round 2. Only one original component did not gain consensus across both rounds and was excluded from the final 32-component framework., Conclusion: This study has developed a comprehensive national framework addressing the macro-, meso- and micro-level interventions required to standardise palliative paramedicine across Australia. Future research ought to engage a multidisciplinary team to create an implementation strategy, addressing any perceived barriers, facilitators and challenges for applying the framework into policy and practice., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objective: Parents and their infants with complex congenital heart disease (CHD) face relational challenges, including marked distress, early separations, and infant hospitalizations and medical procedures, yet the prevalence of parent-infant interaction difficulties remains unclear. Using a standardized observational paradigm, this study investigated mother-infant dyadic synchrony, interactional patterns, and associated predictors in mother-infant pairs affected by CHD, compared with typically-developing pairs., Methods: In this prospective, longitudinal cohort study, mothers and their infants requiring cardiac surgery before age 6-months (n=110 pairs) and an age- and sex-matched Australian community sample (n=85 pairs) participated in a filmed, free-play interaction at 6.9±1.0 months. Mother-infant dyadic synchrony, maternal and infant interactional patterns, and relational risk were assessed using the Child-Adult Relationship Experimental (CARE) Index. Maternal and infant predictors were assessed at 32 weeks gestation, 3- and 6-months postpartum., Results: Most mother-infant interactions were classified as "high risk" or "inept" (cardiac: 94%, control: 81%; p=.007). Dyadic synchrony (p<.001), maternal sensitivity (p=.001), and infant cooperativeness (p=.001) were lower for cardiac than control pairs. Higher maternal traumatic stress at 6-months postpartum predicted lower dyadic synchrony for mother-infant pairs affected by CHD (B=-.04, p=.03). Dyadic synchrony was higher among older infants in the total (B=.40, p=.003) but not cardiac sample (B=.24, p=.06)., Conclusions: Relational difficulties were almost universal among mother-infant pairs affected by CHD and were also high in the Australian community sample. Widespread education initiatives are recommended to increase awareness of heightened mother-infant relational risk in congenital heart care and well-child settings, alongside relationally-focused prevention and early intervention programs., (© The Author(s) 2023. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: Paramedic practice is diversifying to accommodate evolving global health trends, including community paramedicine models and growing expertise in palliative and end-of-life care. However, despite palliative care specific clinical practice guidelines and existing training, paramedics still lack the skills, confidence and clinical support to provide this type of care., Aim: To elicit paramedics', palliative care doctors and nurses', general practitioners', residential aged care nurses' and bereaved families and carers' experiences, perspectives, and attitudes on the role, barriers and enablers of paramedics delivering palliative and end-of-life care in community-based settings., Design: A qualitative study employing reflexive thematic analysis of data collected from semi-structured online interviews was utilised., Setting/participants: A purposive sample of 50 stakeholders from all Australian jurisdictions participated., Results: Five themes were identified: positioning the paramedic (a dichotomy between the life saver and community responder); creating an identity (the trusted clinician in a crisis), fear and threat (feeling afraid of caring for the dying), permission to care (seeking consent to take a palliative approach) and the harsh reality (navigating the role in a limiting and siloed environment)., Conclusion: Paramedics were perceived to have a revered public identity, shaped by their ability to fix a crisis. However, paramedics and other health professionals also expressed fear and vulnerability when taking a palliative approach to care. Paramedics may require consent to move beyond a culture of curative care, yet all participant groups recognised their important adjunct role to support community-based palliative care.

Background: Organisational readiness is recognised as a key factor impacting the successful translation of research findings into practice. Within psycho-oncology, measuring organisational readiness and understanding factors impacting organisational readiness is crucial as it is often challenging to implement evidence-based findings into routine cancer care. In this quantitative study, we examined the level of organisational readiness of cancer services preparing to implement a clinical pathway for the screening, assessment, and management of anxiety and depression in adult cancer patients (the ADAPT CP) within a cluster randomised controlled trial and sought to identify staff- and service-level factors associated with organisational readiness., Methods: Multidisciplinary staff across 12 Australian cancer services were identified. Their perceptions of their services' readiness to implement the ADAPT CP in the cancer stream or treatment modality selected within their service was assessed prior to implementation using the Organizational Readiness for Implementing Change scale. Data collection included staff demographic and professional characteristics, and their perception of the ADAPT CP using a set of 13 study-specific survey items. Service characteristics were captured using a site profile audit form and workflows during site engagement., Results: Fourteen staff- and service-level factors were identified as potentially impacting organisational readiness. To identify factors that best explained organisational readiness, separate univariate analyses were conducted for each factor, followed by a backward elimination regression. Compared to services that implemented the ADAPT CP in one treatment modality, those opting for four treatment modalities had significantly higher organisational readiness scores. Staff in administrative/technical support/non-clinical roles had significantly higher organisational readiness scores compared to psychosocial staff. Higher organisational readiness scores were also significantly related to more positive perceptions of the ADAPT CP., Conclusions: Readiness to implement an anxiety and depression clinical pathway within 12 oncology services was high. This may be attributed to the extensive engagement with services prior to implementation. The factors associated with organisational readiness highlight the importance of ensuring adequate resourcing and supporting staff to implement change, effectively communicating the value of the change, and taking a whole-of-service approach to implementing the change. Future longitudinal studies may identify factors associated with ongoing readiness and engagement prior to implementation., Trial Registration: The ADAPT RCT was registered prospectively with the ANZCTR on 22/03/2017. Trial ID ACTRN12617000411347. https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=372486&isReview=true ., (© 2023. BioMed Central Ltd., part of Springer Nature.)

Background: Palliative care is an emerging scope of practice for paramedicine. The COVID-19 pandemic has highlighted the opportunity for emergency settings to deliver palliative and end-of-life care to patients wishing to avoid intensive life-sustaining treatment. However, a gap remains in understanding the scope and limitations of current ambulance services' approach to palliative and end-of-life care., Aim: To examine the quality and content of existing Australian palliative paramedicine guidelines with a sample of guidelines from comparable Anglo-American ambulance services., Design: We appraised guideline quality using the AGREE II instrument and employed a collaborative qualitative approach to analyse the content of the guidelines., Data Sources: Eight palliative care ambulance service clinical practice guidelines (five Australian; one New Zealand; one Canadian; one United Kingdom)., Results: None of the guidelines were recommended by both appraisers for use based on the outcomes of all AGREE II evaluations. Scaled individual domain percentage scores varied across the guidelines: scope and purpose (8%-92%), stakeholder involvement (14%-53%), rigour of development (0%-20%), clarity of presentation (39%-92%), applicability (2%-38%) and editorial independence (0%-38%). Six themes were developed from the content analysis: (1) audience and approach; (2) communication is key; (3) assessing and managing symptoms; (4) looking beyond pharmaceuticals; (5) seeking support; and (6) care after death., Conclusions: It is important that ambulance services' palliative and end-of-life care guidelines are evidence-based and fit for purpose. Future research should explore the experiences and perspectives of key palliative paramedicine stakeholders. Future guidelines should consider emerging evidence and be methodologically guided by AGREE II criteria.

Objective: Comprehensive tumor genomic profiling (CTGP) is increasingly used to personalize treatments, providing hope, but potentially disappointment, for patients. We explored psychological outcomes in patients with advanced, incurable cancer, after receiving CTGP results., Methods: Participants with advanced, incurable cancer (n = 560, mean age 56, 43% university educated) in this longitudinal substudy of the Molecular Screening and Therapeutics Program (MoST), completed questionnaires before and after receiving CGP results. MoST participants, recruited from Australian oncology clinics, undergo CTGP, and if there are actionable findings, are offered treatment in a related therapeutic trial if available., Results: Patients who received actionable results, (n = 356, 64%) had lower gene-related distress (MICRA) (p < 0.001) and Impact of Events scores (p = 0.039) than patients with non-actionable results. Those with actionable results offered ensured access to tailored treatment (n = 151) reported lower anxiety (p = 0.002) and depressive symptoms (p = 0.01) and greater hope (p = 0.002) than those not offered. Positive attitudes towards uncertainty and higher self-efficacy for coping with results were associated with lower psychological distress and uncertainty, and higher hope and satisfaction with the decision to have CTGP (ps=0.001-0.047). Those with higher knowledge reported greater anxiety (p = 0.034)., Conclusion: Receiving a non-actionable CTGP result, or an actionable result without ensured access to treatment, may cause increased distress in advanced cancer patients. Coping style was also associated with distress., Practice Implications: Pre-testing assessment and counseling addressing attitudes toward uncertainty and self-efficacy, and post-CTGP result support for patients receiving a non-actionable result or who receive an actionable results without ensured access to treatment, may benefit patients., (Copyright © 2022 Elsevier B.V. All rights reserved.)

The increasing use of genetic testing for BRCA1/2 and other pathogenic variants in the management of women with breast and ovarian cancer necessitates increased genetic literacy in oncology healthcare professionals. This pilot study aimed to evaluate an online training program to increase genetic literacy and communication skills in Australian oncology healthcare professionals tasked with discussing and coordinating mainstream genetic testing with breast and ovarian cancer patients. A training website with embedded videos was developed. This study assesses the website's acceptability and user-friendliness; suggestions for improvement were also elicited. Oncology healthcare professionals were recruited through relevant professional organisations, invited to the study by email, asked to work through the website and then complete an online questionnaire. Thirty-two oncology healthcare professionals completed the questionnaire after viewing the website. Nearly all participants were satisfied with the information contained in the program (very satisfied: n = 14/32, 44%, satisfied: n = 17/32, 53%, neither satisfied nor dissatisfied: n = 1/32, 3%) and reported that they had gained new skills (n = 29/32, 91%) and had increased confidence (n = 29/31, 94%) in communicating with breast and ovarian cancer patients about genetic testing. More than 93% (28/30) of participants endorsed the online program as clearly presented, informative, relevant and useful. This pilot study demonstrated high feasibility and acceptability of the training program to increase genetic literacy and communication skills in oncology healthcare professionals discussing genetic testing with breast and ovarian cancer patients. Further evidence from a randomised trial is needed to evaluate effects on changing clinical practice, improving patient outcomes, and cost-effectiveness., (© 2021. The Author(s), under exclusive licence to Springer Nature B.V.)

Background: People with melanoma want and need effective interventions for living with fear of cancer recurrence (FCR)., Objectives: This study reports the 12-month outcomes of a brief, psychological intervention designed to reduce FCR in people at high risk of developing another primary melanoma compared with usual care., Methods: In this two-arm randomized controlled trial, adults previously diagnosed with stage 0, I or II melanoma were randomly allocated to the intervention (n = 80) or control (usual care) arm (n = 84). The trial was registered with the Australian and New Zealand Clinical Trials Registry on 19 March 2013 (registration: ACTRN12613000304730). The intervention comprised a 76-page psychoeducational resource and three individually tailored, telephone-based sessions with a psychologist, scheduled at specific time points around participants' dermatological appointments. The primary outcome was the level of self-reported fear of new or recurrent melanoma assessed at 12 months postintervention using the severity subscale of the Fear of Cancer Recurrence Inventory., Results: Compared with the control arm, the intervention group reported significantly lower FCR at 12 months postintervention; the between-group mean difference was -1·41 for FCR severity [95% confidence interval (CI) -2·6 to -0·2; P = 0·02] and -1·32 for FCR triggers (95% CI -2·6 to -0·02; P = 0·04). The odds ratio for FCR severity scores ≥13 (54% intervention, 63% control) was 0·59 (95% CI 0·30-1·14, P = 0·12). There were no differences between groups in secondary outcomes, such as anxiety, depression or health-related quality of life., Conclusions: The previously reported 6-month benefits of this brief, patient-centred psychological intervention in reducing FCR were found to continue 12 months postintervention, with no known adverse effects, supporting implementation as part of routine melanoma care., (© 2019 British Association of Dermatologists.)

Objective: Head and neck cancer (HNC) patients commonly undergo radiation therapy requiring immobilisation by a mask. Some find the mask distressing, and this can disrupt treatment sessions. This study aimed to explore the patient experience of immobilisation masks in the Australian and New Zealand (ANZ) context, to guide possible intervention., Methods: Semi-structured interviews were conducted with HNC patients who had completed radiation therapy, recruited via hospitals and social media. Interviews continued until data saturation; then, three further interviews were conducted for member-checking purposes. Qualitative methodology with thematic analysis was used to identify themes in the data., Results: Twenty HNC survivors participated in interviews, and seven themes were identified: information received by participants, potential predictors of mask anxiety, participant reactions to the mask, trajectories of mask anxiety, supportive behaviour and communication of health professionals, coping with the mask, and thoughts and feelings about the mask., Conclusions: Participant experiences of the immobilisation mask were diverse. The findings fit with Lazarus and Folkman's (Stress, appraisal, and coping. New York, NY: Springer Pub. Co) transactional model of stress and coping, as participants appeared to make cognitive appraisals of the mask and their coping abilities throughout treatment, resulting in varied levels of mask-related distress. Complex intervention is recommended to reduce mask anxiety in HNC patients across ANZ., (© 2019 John Wiley & Sons Ltd.)

Objectives: Disclosure of a hereditary condition in the family poses notable challenges for patients who often seek the assistance of genetic health professionals (GHPs). This study aimed to investigate GHPs' opinions about the ideal time for disclosure to offspring and their responsibility to at-risk relatives., Design: Cross-sectional qualitative study., Setting: Genetic familial cancer clinics related to mostly secondary and tertiary care hospitals and centres in urban, regional and rural areas across all states of Australia., Participants: GHPs (N=73) including clinical geneticists, genetic counsellors, medical specialists, nurses, surgeons and mental health specialists (eg, psychiatrists, psychologists) who had worked with BRCA1 and BRCA2 families for an average of 9 years., Results: Focus groups and interviews were transcribed and analysed thematically. GHPs perceived that life stage, maturity, parents' knowledge and capacity to disseminate information influenced parent-offspring disclosure. In general, GHPs recommended early informal conversations with offspring about a family illness. GHPs considered that facilitation of disclosure to relatives using counselling strategies was their responsibility, yet there were limitations to their role (eg, legal and resource constraints). Variability exists in the extent to which genetic clinics overcome challenges to disclosure., Conclusions: GHPs' views on the ideal time for the disclosure of genetic risk are generally dependent on the patient's age and relative's ability to disclose information. A responsibility towards the patient and their at-risk relative was widely accepted as a role of a GHP but views vary depending on legislative and specialty differences. Greater uniformity is needed in genetic procedural guidelines and the role of each discipline (eg, geneticists, genetic counsellors, oncologists, nurses and mental health specialists) in genetic clinics to manage disclosure challenges., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Young adults at risk of a hereditary condition require the provision of accurate information to make an informed decision about genetic testing and risk management options. At-risk young adults' (18- to 40-year olds) preferences for information and resources, and genetic-related health professionals' (GHPs) views on young adults' information needs, are largely unknown in the literature. This study aimed to clarify and compare the information needs of emerging (18- to 25-year olds) and early (26- to 40-year olds) adults. Resource preferences of young adults were also explored. Findings are drawn from two datasets: questionnaires and semi-structured interviews with at-risk young adults from BRCA1 or BRCA2 families (N = 32), and focus groups with GHPs (N = 73) working in Australian familial cancer clinics. Both datasets were analyzed using framework analysis. Emerging adults, particularly those who had not attended a clinic, wanted to know the rationale for genetic testing and basic genetic facts. Early adults were concerned about reproductive issues and cancer risk for future or current children. Information needs reported by young adults but not reported by GHPs include male cancer risk, finding reputable information, understanding test results (e.g., negative), and understanding risk terminology (e.g., lifetime cancer risk). Young adults' satisfaction with current information received was suboptimal, yet uptake of genetic-related resources was generally low. Getting information to this cohort remains a challenge for GHPs. Emerging adults showed a preference to obtain information through technologically-based formats (e.g., websites, social media), whereas early adults used a wider range of formats (e.g., websites, booklets). Awareness of and access to genetic information prior to genetic clinic attendance is needed. A review of the utility of current resources available for at-risk young adults would be helpful., (© 2019 National Society of Genetic Counselors.)

Hereditary genetic conditions have implications for the whole family and therefore genetic health professionals (GHPs) interact with multiple family members, sometimes individually and sometimes in aggregate. Family communication is important to ensure dissemination of genetic information to potentially affected relatives and to facilitate supportive family interactions around genetic testing and risk management decisions. Yet, little is known about how GHPs perceive and manage these interactions. A total of 73 GHPs working across Australian cancer genetic clinics participated in semi-structured focus groups or interviews to elucidate what aspects of family communication they found most challenging, the strategies they used, and whether current academic training provides sufficient guidance to address familial concerns. Patients' lack of understanding about the importance of communicating genetic information to at-risk relatives was the most common challenge reported. GHPs reported that the patients' concern for their families' emotional responses as well as wider family system challenges (e.g. estrangement) affected family communication. Common strategies during consultations included structuring appointments logistically to account for family dynamics and post-consultation use of family letters and follow-up appointments. GHPs generally felt equipped with the skills and training provided to address patient concerns, but also desired upskilling in techniques relating to systemic family issues and behavioural change. Reflective practice strategies were requested by geneticists and nurses to foster therapeutic skill usage. Additional family therapy training while on the job may be beneficial in order to meet current challenges faced in clinical practice and can be provided as further professional development.

While family communication about a BRCA1 or BRCA2 (BRCA1/2) pathogenic variant can be a catalyst for the uptake of risk-reducing measures in young adults, disseminating information within families and across generations is complex. This study aimed to explore how young adults and their families communicate about a BRCA1/2 pathogenic variant, from a family systems perspective. In-depth family interviews and questionnaires (N = 67 individuals; 21 families) were completed at four metropolitan and regional genetic clinics in Australia. Data involved thematic analysis and interpretation based on family systems theory, including the use of standardized measures. Six key themes were identified and explored: (1) Responsibility to protect, (2) "It's a woman's problem," (3) Family culture influences communication, (4) Adversarial growth and connection, (5) Key events can be relational turning points, and (6) Health professionals can help. Family identities were solidified through the incorporation of a pathogenic variant in family scripts, while members of the family who held differing views to their families expressed less agreeableness and openness to disseminate information. The collective family's experience and perspective toward a pathogenic variant can influence a young adult's decision-making about genetic testing, risk-management, and family planning. The utilization of family therapy skills in routine practice would be helpful in facilitating communication and the inclusion of standardized measures is beneficial to identify individuals needing ongoing psychological support. Understanding relationship difficulties that arise from family members holding divergent views can offer insight into future research inquiry and areas of further training and clinical support., (© 2019 National Society of Genetic Counselors.)

Background: We modified and evaluated an advance care planning (ACP) intervention, which had been shown to improve compliance with patient's end of life (EoL) wishes, in a different patient population., Methods: Patients with incurable cancer, and a Family Member (FM), were randomised one-to-one to usual care or usual care plus an ACP intervention, between April 2014 and January 2017. Oncologists and participants were non-blinded. ACP was based on the Respecting Patient Choices model, with an offer to provide individualised ranges for typical, best-case and worst-case scenarios for survival time. Seven facilitators (two oncology nurses, two nurses and three allied health professionals) delivered the intervention within 2 weeks of study enrolment. The primary outcome measure, assessed by interviewing the FM 3 months after patient death, was the FM perception that the patient's wishes were discussed, and met., Results: Six hundred and sixty-five patients from seven Australian metropolitan oncology centres were referred for consideration by their oncologists, 444 (67%) met the study inclusion criteria and were approached by a study researcher. Two hundred and eight patients (47%) and their FM entered the trial as dyads. Fifty-three (46%) dyads in the ACP group and 63 (54%) dyads in the usual-care group had complete primary outcome data (p = 0.16). Seventy-nine patients and 53 FMs attended an ACP discussion. Mean length of discussion was 57 min. FMs from 23 (43%) dyads allocated to ACP and 21 (33%) dyads allocated usual care reported the patient's EoL wishes were discussed and met (difference 10%, 95% CI: -2 to 8, p = 0.27). There were no differences in EoL care received, patient satisfaction with care; FM satisfaction with care or with death; or FM well being. Rates of palliative care referral were high in both groups (97% vs 96%)., Conclusions: A formal ACP intervention did not increase the likelihood that EoL care was consistent with patients' preferences.

MDS is a complex and potentially severe disease which can trigger psychological distress. A lack of information received and understood about MDS may also arouse feelings of distress. Low health literacy (HL) might play a role particularly among older patients. Our aim was to assess MDS-related distress and to study the factors associated with it, including medical and non-medical factors such as HL. A self-administered questionnaire was mailed to all members of French and Australian patients' national MDS associations. Data of 280 patients were analysed. A majority of patient (59.5%) reported low functional HL and 50% reported regular difficulties in asking physicians questions. Distress was not modified by gender, awareness of increased risk of developing leukaemia or MDS characteristics. French patients had a higher mean IES score (adjusted β = 5.9, p = 0.004) compared to Australian patients. Poor satisfaction with information provided about MDS, lower functional HL and difficulties in asking physician's questions were also independently associated with distress. MDS-related distress seems more related to HL and communication with physicians than to MDS characteristics. More efforts are needed to improve health literacy, tailor information for MDS patients and support them psychologically in order to improve their emotional well-being., (Crown Copyright © 2018. Published by Elsevier Ltd. All rights reserved.)

Importance: The diagnosis of a life-threatening disease like melanoma can affect all aspects of a person's life, including health-related quality of life (HRQOL) and psychological aspects of melanoma such as fear of cancer recurrence (FCR). Economic evaluations of psychological interventions require preference-based (utility) instruments that are sensitive to changes in well-being and HRQOL; however, very few studies have evaluated the sensitivity of these instruments when used for people with melanoma., Objective: To compare utility scores from the multiple-attribute instrument Assessment of Quality of Life-8-Dimension Scale (AQoL-8D) with the mapped utility scores of the Functional Assessment of Cancer Therapy-Melanoma (FACT-M) and to investigate the sensitivity of both instruments in identifying the influence of FCR on HRQOL., Design, Setting, and Participants: This assessment of data from a randomized clinical trial of a psychoeducational intervention to reduce FCR, conducted at 3 high-risk melanoma clinics in Australia, evaluated 164 patients with early-stage melanoma and a high risk of developing a second primary melanoma., Main Outcomes and Measures: The FACT-M and AQoL-8D were used to assess HRQOL and FCR among the study participants. Concurrent validity was assessed by comparing the total and subdomain scores of the 2 instruments, and the strength of associations was assessed using Pearson correlation coefficient. Convergent validity was assessed by comparing participants' HRQOL, demographic, and clinical characteristics using the χ2 test and F statistic. Both the FACT-M and AQoL-8D utilities were regressed on FCR Inventory (FCRI) severity scores to estimate the effect of elevated FCR on HRQOL., Results: A total of 164 participants completed the baseline questionnaires, but only 163 met all inclusion criteria and underwent the full analysis: 72 were women; 91 were men; and mean (SD) age was 58.2 (12.1) years. Both the AQoL-8D and FACT-M instruments showed good concurrent validity and could differentiate between relevant subgroups including level of FCRI severity. The AQoL-8D and FACT-M utilities were strongly correlated (r2 = 0.57). Respondents had a mean (SD) AQoL-8D utility of 0.77 (0.2), and a mean (SD) FACT-M utility score of 0.76 (0.07). High levels of FCRI severity were associated with a decrease in utility of 0.12 (95% CI, -0.19 to -0.05) as measured by AQoL-8D, and a decrease of 0.03 (95% CI, -0.05 to -0.01) as measured by the FACT-M., Conclusions and Relevance: For economic evaluations of psychological interventions in melanoma, the AQoL-8D and FACT-M are valid measures of utility; however, the AQoL-8D demonstrates greater sensitivity to FCRI severity. Our results suggest a significant association between FCR and HRQOL.

Background: Advance care planning (ACP) is defined in a variety of ways, although it is widely understood as a process undertaken by patients, when they have capacity, to define and communicate their treatment preferences for future care. Few studies have explored the meaning and importance patients place on their ability to participate in directing their medical care., Aim: This study aimed to explore how cancer patients and their family members value autonomy at the end of life (EoL) and understand how this may impact on the way they develop and act on EoL decisions and planning., Methods: Data were collected through in-depth semi-structured interviews with patients and family members of people with cancer. Participants were recruited from metropolitan cancer centres in Sydney, Australia. Interviews were analysed using thematic analysis., Findings: Findings from 11 participant interviews (five patients with cancer and six family members) were organised into four themes: 'the threat of death and cancer'; 'patients seek trust and safety at the end of life'; 'doctors are human and the healthcare system has limitations'; and 'the role of ACP'. Participants experienced cancer and death as a 'threat', to self and others and as something 'uncontrollable'. ACP was seen to have the potential to enhance EoL care by contributing to decreasing uncertainty, enhancing comfort, helping to achieve 'the small things', and in helping the family 'know what to do'. However, participants were, in general, distrustful of documentation and cognisant of uncertainty around medical outcomes and the legal limitations of their capacity to influence care., Conclusions: These findings suggest that models of ACP which are constructed around patients' 'rights' to determine what happens to their bodies may do little to enhance the quality of EoL care, as patients value veracity, trust and comfort at the EoL more than autonomy. Quality EoL care should focus on paying increased attention to the relational and social aspects of care.

Purpose: Migrants diagnosed with cancer in Australia have high unmet need and poorer psychosocial outcomes than comparable Australian-born patients. It is possible that migrants also experience worse coordination of their cancer care. The purpose of this study was to describe migrant patients' experience of care coordination to inform the development of items for inclusion in a cancer care coordination questionnaire sensitive to the specific cultural needs of these patients., Methods: Eighteen Chinese (Mandarin and Cantonese), Arabic and Macedonian patients and carers from two metropolitan cancer centres in Sydney, Australia, were recruited. Two focus groups and 11 telephone interviews were conducted in the participants' own language. A semi-structured interview format was utilised to qualitatively explore participants' experiences of cancer care coordination during treatment. Themes were identified using a thematic analysis., Results: Cancer care was generally perceived to be well coordinated. Four themes were identified that impacted on the quality of care coordination as a direct result of a patient's migrant status: (1) the impact of language on understanding and information access, (2) the role of interpreters and (3) access to services and (4) understanding the roles and responsibilities of the team., Conclusions: Despite their care generally being well coordinated, migrants require additional assistance such as information in a form appropriate to their language proficiency and understanding of the new health system. Development of a culturally specific measure of cancer care coordination will enable evaluation of future strategies to improve care.

Objective: e-Mental health services have been shown to be effective and cost-effective for the treatment of depression. However, to have optimal impact in reducing the burden of depression, strategies for wider reach and uptake are needed., Method: A review was conducted to assess the evidence supporting use of e-mental health programmes for treating depression. From the review, models of dissemination and gaps in translation were identified, with a specific focus on characterising barriers and facilitators to uptake within the Australian healthcare context. Finally, recommendations for promoting the translation of e-mental health services in Australia were developed., Results: There are a number of effective and cost-effective e-health applications available for treating depression in community and clinical settings. Four primary models of dissemination were identified: unguided, health service-supported, private ownership and clinically guided. Barriers to translation include clinician reluctance, consumer awareness, structural barriers such as funding and gaps in the translational evidence base., Conclusion: Key strategies for increasing use of e-mental health programmes include endorsement of e-mental health services by government entities, education for clinicians and consumers, adequate funding of e-mental health services, development of an accreditation system, development of translation-focused activities and support for further translational research. The impact of these implementation strategies is likely to include economic gains, reductions in disease burden and greater availability of more interventions for prevention and treatment of mental ill-health complementary to existing health and efficient evidence-based mental health services., (© The Royal Australian and New Zealand College of Psychiatrists 2015.)

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., (Copyright © 2014 John Wiley & Sons, Ltd.)

Purpose: The purpose of this study was to assess the invariance of a culturally competent multi-lingual unmet needs survey., Methods: A cross-sectional study was conducted among immigrants of Arabic-, Chinese- and Greek-speaking backgrounds, and Anglo-Australian-born controls, recruited through Cancer Registries (n = 591) and oncology clinics (n = 900). The survey included four subscales, with newly developed items addressing unmet need in culturally competent health information and patient support (CCHIPS), and items adapted from existing questionnaires addressing physical and daily living (PDL), sexuality (SEX) and survivorship (SURV) unmet need. The survey was translated into Arabic, Chinese and Greek. Rasch analysis was carried out on the four domains., Results: Whilst many items were mistargeted to less prevalent areas of unmet need, causing substantial floor effects in person estimates, reliability indices were acceptable. The CCHIPS domain showed differential item functioning (DIF) for cultural background and language, and the PDL domain showed DIF for treatment phase and gender. The results for SEX and SURV domains were limited by floor effects and missing responses. All domains showed adequate fit to the model after DIF was resolved and a small number of items were deleted., Conclusions: The study highlights the intricacies in designing a culturally competent survey that can be applied to culturally and linguistically diverse groups across different treatment contexts. Overall, the results demonstrate that this survey is somewhat invariant with respect to these factors. Future refinements are suggested to enhance the survey's cultural competence and general validity.

Aim: Telephone-delivered supportive care interventions hold potential as a sustainable, low-resource option to improve patients' outcomes. Such interventions may be delivered centrally or locally. There is limited information about clinicians' preferences for these alternative models of service delivery. This study investigated the views of cancer clinicians who had experience of a centralized model., Methods: Interviews were conducted with 16 surgeons and nurses across New South Wales, Australia, who had participated in a trial of a centralized telephone-based supportive care intervention. Content analysis was conducted. Data were analyzed inductively and responses organized into categories and then higher order themes., Results: All clinicians valued the role of telephone follow ups as they would allow patients to ask questions and receive reassurance. Clinicians believed these services could reduce hospital presentations and provide equity and standardized care, particularly to those outside metropolitan centers. Although clinicians accepted a centralized model of delivery would be cheaper, most (n = 15) indicated a preference for local delivery. This preference was based on the perception that local nurses would have superior knowledge of the local context. Despite the improved feasibility of a telephone-only service, clinicians felt some face-to-face contact with patients was essential. Key at-risk groups to target were identified. Clinicians acknowledged there could be overlap with cancer nurses locally requiring local decisions about implementation., Conclusion: There was clear endorsement of additional telephone support with a preference for a local model of service delivery. The limited acceptability of centralized telephone-based supportive care interventions may restrict their uptake., (© 2013 Wiley Publishing Asia Pty Ltd.)

The present study qualitatively assessed the psychosocial impacts experienced by stage III melanoma patients and caregivers throughout the course of the disease, and the coping responses they utilized in an attempt to promote psychosocial adjustment. The purpose of the study was to inform the development of a supportive care strategy for this population. Nineteen stage III melanoma patients and 14 of their caregivers were recruited from the clinical research database of the Melanoma Institute Australia. Data were collected using semistructured telephone interviews and analysed using thematic analysis. Participants reported psychosocial impacts related to diagnosis (shock, panic and devastation), treatment (challenges and unsatisfactory care, pain and limitation, practical impacts, new roles and responsibilities for the caregiver, caregiver inadequacy) and survivorship (ongoing physical problems, watchful waiting, feeling abandoned). They also reported global themes relevant to multiple phases of the disease (emotional distress, disfigurement, injustice, caregiver devaluation). Coping responses were identified related to diagnosis (avoidance), treatment (confidence in the treatment team, taking action) and survivorship (finding a positive meaning, acceptance and moving on) as well as global themes pertaining to multiple disease phases (receiving support, helpful thinking, putting on a brave face, redirecting attention, religion). The current findings support routine screening for the presence of symptoms and psychological distress and appropriate referral when necessary, and for provision of psychosocial interventions to provide information and support to stage III melanoma patients and caregivers. In addition, provision of communication skills training to all health professionals treating melanoma, use of evidence-based strategies for improving patient/caregiver understanding and recall, and routine assessment of patient-reported outcomes to inform clinical practice would be helpful.

Purpose: Caregiver burden, quality of life (QOL) and unmet needs are poorly understood, particularly at the end of life. We explored these issues in caregivers of women with ovarian cancer., Patients and Methods: The Australian Ovarian Cancer Study (AOCS) is a prospective population-based study of women newly diagnosed with primary epithelial ovarian cancer. Ninety-nine caregivers of women participating in the AOCS QOL sub-study (88% response rate) rated their QOL (SF-12), psychological distress (HADS), optimism (LOT), social support (Duke) and unmet needs (SCNS-carers), and patients rated their QOL (FACT-O), every three months for two years. This analysis included measurements in the patient's last year of life., Results: Caregivers had significantly lower mental and physical QOL than population norms (p<0.01). Mean distress (p=0.01) and unmet needs increased over time, however social support remained constant. In linear mixed models, (using scores for each psychosocial variable over time), optimism (p<0.0001), social support (p<0.0001), higher unmet needs (p=0.008), physical wellbeing (p<0.0001), and time to death (p<0.0001) but not patient QOL, predicted caregiver mental well-being and distress. Highest unmet needs in the last 6months related to managing emotions about prognosis, fear of cancer spread, balancing one's own and the patient's needs, impact of caring on work and making decisions in the context of uncertainty., Conclusions: Aspects of caregiver functioning, rather than patient quality of life, predict caregiver quality of life and distress. Caregivers need help with managing emotions about prognosis, balancing their own and the patient's needs, work, and decision-making when there is uncertainty., (Copyright © 2014 Elsevier Inc. All rights reserved.)

Purpose: Although cancer can seriously affect peoples' sexual well-being, survivors and patients may be reluctant to answer questions about sex. This reluctance may be stronger for immigrants. This study aimed to investigate missing sex data rates and predictors of missingness in two large studies on immigrants and Anglo-Australian controls with cancer and to investigate whether those with missing sex data may have worse sexual outcomes than those with complete data., Methods: We carried out two studies aimed at describing the quality of life (QoL) and unmet needs amongst Arabic, Chinese and Greek immigrants versus Anglo-Australians cancer survivors (n = 596, recruited from cancer registries) and patients (n = 845). Logistic regression was used to model the probability of having missing sex data in either of the questionnaires. We compared the mean of the unmet sex needs responses of those who had missing QoL sex data (but not needs) to those who had completed both, and vice versa., Results: Missing sex data rates were as high as 65 %, with immigrants more likely to skip sex items than Anglo-Australians (p = 0.02 for registry study, p < 0.0001 for hospital study). Women, older participants and participants with more advanced disease had increased odds of missingness. There was evidence that data were informatively missing. Additionally, the questionnaire which stated that the sex questions are optional had higher missing data rates., Conclusion: High missing data rates and informatively missing data can lead to biased results. Using the questionnaires that state that they may skip sex items may lead to an underestimation of sexual problems or an overestimation of quality of life.

Purpose: To investigate the effectiveness of a centralized, nurse-delivered telephone-based service to improve care coordination and patient-reported outcomes after surgery for colorectal cancer., Patients and Methods: Patients with a newly diagnosed colorectal cancer were randomly assigned to the CONNECT intervention or usual care. Intervention-group patients received standardized calls from the centrally based nurse 3 and 10 days and 1, 3, and 6 months after discharge from hospital. Unmet supportive care needs, experience of care coordination, unplanned readmissions, emergency department presentations, distress, and quality of life (QOL) were assessed by questionnaire at 1, 3, and 6 months., Results: Of 775 patients treated at 23 public and private hospitals in Australia, 387 were randomly assigned to the intervention group and 369 to the control group. There were no significant differences between groups in unmet supportive care needs, but these were consistently low in both groups at both follow-up time points. There were no differences between the groups in emergency department presentations (10.8% v 13.8%; P = .2) or unplanned hospital readmissions (8.6% v 10.5%; P = .4) at 1 month. By 6 months, 25.6% of intervention-group patients had reported an unplanned readmission compared with 27.9% of controls (P = .5). There were no significant differences in experience of care coordination, distress, or QOL between groups at any follow-up time point., Conclusion: This trial failed to demonstrate substantial benefit of a centralized system to provide standardized, telephone follow-up for postoperative patients with colorectal cancer. Future interventions could investigate a more tailored approach.

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.

Objective: Poor prognosis is difficult to impart, particularly across a cultural divide. This study compared prognostic communication with immigrants (with and without interpreters) versus native-born patients in audio-taped oncology consultations., Methods: Ten oncologists, 78 patients (31 Australian-born, 47 immigrants) and 115 family members participated. The first two consultations after diagnosis of incurable disease were audiotaped, transcribed and coded. 142 consultations were included in the analysis., Results: Fifty percent of doctor and 59% of patient prognostic speech units were not interpreted or interpreted non-equivalently when an interpreter was present. Immigrant status predicted few prognostic facts, and oncologist characteristics no prognostic facts, disclosed. Oncologists were significantly less likely to convey hope to immigrants (p=0.0004), and more likely to use medical jargon (p=0.009) than with Australian-born patients. Incurable disease status and a limited life span were commonly acknowledged, generally with no timeframe provided. Physical issues were discussed more commonly than emotional aspects., Conclusions: While culture did not appear to influence doctor speech, interpreters filtered or blocked much prognostic communication., Practice Implications: Initiatives to empower all patients to attain needed information, optimise communication when an interpreter is present and train cancer health professionals in culturally appropriate care, are urgently required., (Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.)

Objective: The objective of this paper is to determine changes in supportive care needs after first-line treatment for ovarian cancer and identify risk factors for future unmet needs., Methods: Two hundred and nineteen women with ovarian cancer were asked to complete a baseline survey 6-12 months after diagnosis then follow-up surveys every 6 months for up to 2 years. The validated Supportive Care Needs Survey-Short Form measured 34 needs across five domains. Logistic regression identified baseline variables associated with future needs., Results: At baseline, standardized median scores (possible range 0-100, least-to-greatest need) within the psychological, system/information, physical, patient care and sexuality need domains were 25, 20, 15, 15 and 8, respectively. The most frequently reported moderate-to-high unmet needs at baseline were needing help with fear about cancer spreading (25%), concerns about worries of those close (20%), being informed about things to help get well (20%), uncertainty about future (19%) and lack of energy (18%). All except the item about being informed were still reported as unmet needs by ≥ 15% of women 2 years later. Median health system/information, patient care and sexuality need scores decreased over 2 years (p<0.05), whereas psychological and physical scores remained constant. Risk factors for having ≥ 1 moderate-to-high unmet overall, psychological or physical need 1-2 years after baseline included older age, advanced disease, unmet need, anxiety, depression, insomnia and less social support at baseline., Conclusion: Women with ovarian cancer report needing ongoing assistance to deal with psychological and physical needs over the first 2 years after first-line treatment. Targeting individuals at risk of future unmet needs should be prioritized., (Copyright © 2012 John Wiley & Sons, Ltd.)

Background: Complications of grief are an important area of investigation with potential to improve the well-being of palliative care caregivers. There has been little study of the prevalence or significance of post-traumatic stress disorder for those bereaved after an expected death., Aim: To identify evidence suggestive of post-traumatic stress disorder symptoms in a population of bereaved caregivers of patients who have died of ovarian cancer., Design: Caregivers' recollections of their end-of-life experiences were coded and analysed, using qualitative data obtained from interviews 6 months after the patient's death., Setting/participants: Australian Ovarian Cancer Study-Quality of Life Study is a population-based epidemiological study using mixed methods to explore caregivers' experiences following the expected death of a woman with ovarian cancer. Thirty-two caregivers from the Australian Ovarian Cancer Study-Quality of Life Study participated in semi-structured telephone interviews 6 months post-bereavement., Results: When describing the patient's death at their 6-month interview, all interviewees used language consistent with some degree of shock and traumatisation. For the majority, there was also evidence suggesting resilience and resolution. However, a number of interviewees describe intrusive memories associated with physical sights and sounds that they witnessed at the deathbed., Conclusions: This exploratory study demonstrates the phenomenon of the 'shocked caregiver'. If trauma symptoms are present in bereaved carers in palliative care, it has implications for palliative care provision. Given that trauma symptoms may be distinct from prolonged grief disorder, this may also have implications for provision of bereavement counselling. Further research into this phenomenon is required.

Background: Existential/spiritual needs of advanced cancer patients are not always met in healthcare. Potential barriers for health professionals exploring existential concerns include lack of time, training, tools, and confidence. Yet patients with life-threatening illnesses require holistic care, and interest in their existential/spiritual needs is growing. Preparation and life completion interventions have shown positive results in the existential/spiritual care of hospice-eligible patients in the United States. Nurses are in the ideal position to deliver such interventions, but have not been previously evaluated in this context., Objective: The objective of this study was to explore the acceptability and feasibility of a nurse-facilitated preparation and life completion intervention (Outlook) in an Australian palliative care patient population., Methods: Patients discussed their life story, forgiveness, and heritage and legacy over 3 audiotaped sessions. Preintervention/postintervention outcome measures included the Memorial Symptom Assessment Scale, Functional Assessment of Cancer Therapy-Spirituality Well-being, Profile of Mood States, Quality of Life at End of Life Scale, and Center for Epidemiological Depression Scale. Participant feedback was subjected to thematic analysis to understand the patient experience of receiving the intervention., Results: Ten palliative care patients with advanced cancer completed the study. Patients reported the intervention and assessments to be acceptable and feasible and to be overall positively received although with nonsignificant improvements in measures of "meaning and peace" and "preparation for end of life.", Conclusion: A nurse-facilitated preparation and life completion intervention is acceptable and feasible for palliative care patients with advanced cancer in Australia., Implications for Practice: Outlook is a novel, portable, and feasible tool for use by nurses when addressing existential and spiritual domains of care with patients with advanced cancer.

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., (Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.)

Background: Cancer patients want access to reliable information about currently recruiting clinical trials., Patients and Methods: Oncologists and their patients were randomly assigned to access a consumer-friendly cancer clinical trials web site [Australian Cancer Trials (ACT), www.australiancancertrials.gov.au] or to usual care in a cluster randomized controlled trial. The primary outcome, measured from audio recordings of oncologist-patient consultations, was the proportion of patients with whom participation in any clinical trial was discussed. Analysis was by intention-to-treat accounting for clustering and stratification., Results: Thirty medical oncologists and 493 patients were recruited. Overall, 46% of consultations in the intervention group compared with 34% in the control group contained a discussion about clinical trials (P=0.08). The mean consultation length in both groups was 29 min (P=0.69). The proportion consenting to a trial was 10% in both groups (P=0.65). Patients' knowledge about randomized trials was lower in the intervention than the control group (mean score 3.0 versus 3.3, P=0.03) but decisional conflict scores were similar (mean score 42 versus 43, P=0.83)., Conclusions: Good communication between patients and physicians is essential. Within this context, a web site such as Australian Cancer Trials may be an important tool to encourage discussion about clinical trial participation.

Purpose: This study aimed to explore the effect of physician endorsement of question-asking on advanced cancer patients' question-asking behaviour during consultations about palliative care and to explore other potential predictors of patient question-asking., Methods: Data were obtained from 80 control group patients from a randomised controlled trial of standard palliative care (PC) consultation (control group) versus provision of a question prompt list (QPL) before the consultation. Consecutive eligible patients with advanced cancer referred to 15 PC physicians from nine Australian PC centres participated. Baseline measures were obtained from patients; consultations were audiotaped, transcribed and analysed by blinded coders; and physicians estimated the patients' survival., Results: Endorsement of question-asking by the physician was not related to the number of patient questions. Patients with the highest anxiety levels asked 3.5 times as many questions as those with least anxiety (incidence rate ratio (IRR) = 3.54, 95% confidence interval (CI) 1.90-6.59, P = 0.001). After allowing for the effect of anxiety, patients with an estimated survival of >12 weeks asked 76% more questions (IRR = 1.76, 95% CI 1.03-3.00, P = 0.04), whereas age, sex, educational background, occupation, information and involvement preferences and presence of a caregiver were not related to patient question-asking behaviour., Conclusion: Physician endorsement of question-asking alone does not appear to increase questions by advanced cancer patients during consultations about PC. Additional resources such as QPLs may be needed to facilitate patient question-asking.

Background: The Australasian Chapter of the Palliative Medicine (AChPM) Curriculum Development Group identified communication as a core skill that trainees in palliative medicine need to acquire, and proposed the development of a communication skills workshop that should become a compulsory part of training to achieve accreditation as a palliative medicine specialist in Australia and New Zealand. This paper describes the development and subsequent evaluation of this module., Methods: A three-day communication workshop was developed in collaboration with expert communication skills facilitators from the United States and Australia. The teaching consists of: (1) brief plenary presentations providing an evidence-based framework for communication and a demonstration of suggested strategies; (2) small group experiential learning providing opportunities to practice communication skills with clinically relevant simulated patients, self-appraisal, constructive feedback, and reflective exercises; and (3) accompanying course-specific written material. Participants completed de-identified questionnaires before, after, and three months following completion of the workshop., Results: Forty-one participants completed the training in two workshops held in 2008 and 2009. Participants said in their questionnaire responses that the training was useful, would be helpful for their communication with patients, and that they would recommend the training to others. Qualitative feedback was highly positive. Self-assessed confidence in communication skills significantly increased following the workshop (p<.001) and was sustained at three months (p<.001)., Conclusion: The training is highly valued by participants and increases confidence in communication skills. Facilitator training and capacity planning will be critical for the ongoing success of the communication workshop.

Objective: To examine the feasibility and acceptability of routine provision of patient question prompt lists (QPLs) to promote patient participation and patient-clinician communication in medical consultations., Methods: Four cancer centres across NSW, Australia (two rural, two urban) were invited to participate, involving distribution of QPLs to patients seeing a medical or radiation oncologist, or palliative care clinician. Patients rated their satisfaction after their next consultation. Cancer specialists provided their views at the end of the study., Results: Sixty-four percent (389/606) of patients attending consultations received a QPL. Of patients offered a QPL (426), 91% accepted. Of 139 patients surveyed post-consultation, 89% reported reading the QPL and, of these, 44% referred to the QPL during the consultation at least once. All of 10 cancer specialists providing their views post-implementation reported that QPL implementation in routine practice was feasible and did not strain resources., Conclusions: Cancer patients and cancer specialists showed support for routine dissemination of the QPL., Practice Implications: For successful implementation of evidence-based tools we recommend promotion by local clinical champions, negotiation with clinic staff about dissemination methods, raised patient awareness through on-site project facilitators, media, consumer and support groups, and availability of resources in hard copy and via online sources., (Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.)

Aim: There are limited data concerning the unmet needs experienced by patients with colorectal cancer. The aim of this study was to identify unmet supportive care needs of people with colorectal cancer following discharge from hospital., Method: Health service utilization was used as a measure of expressed unmet need. A retrospective case note review was conducted of 521 patients surgically treated for colorectal cancer at Royal Prince Alfred Hospital, Sydney, between 1 January 2004 and 31 December 2007. Case notes maintained by a cancer nurse specialist were reviewed to identify postdischarge occasions-of-service where unmet need was expressed. Logistic regression was conducted to investigate predictors of unmet need., Results: Of 521 patients, 219 (42%) patients had unmet supportive care needs, of which 50% of all needs was found in the physical domain. Twenty-six per cent of unmet needs was expressed within the first week following discharge from hospital after cancer surgery; however, 21% persisted after 6 months. Multivariate analysis indentified that in this cohort, younger age predicted the expression of an unmet need (AOR, 0.97; 95% CI, 0.96-0.99). People with rectal cancer remained significantly more likely to require more than one contact with the nurse to satisfy a need (AOR, 2.80; 95% CI, 1.60-5.01) and to report a physical need (AOR, 3.56; 95% CI, 2.03-6.27)., Conclusion: This study has shown that auditing the interactions of a cancer nurse with patients can provide information about unmet supportive care needs, which can be used to develop relevant supportive care services or interventions for people with colorectal cancer., (© 2011 The Authors. Colorectal Disease © 2011 The Association of Coloproctology of Great Britain and Ireland.)

Objectives: To document levels of and changes in physical activity before and after ovarian cancer diagnosis and explore associations with psychosocial outcomes., Methods: Of 1207 eligible Australian Ovarian Cancer Study (AOCS) participants, 798 participated in an additional prospective Quality of Life (QoL) Study which measured anxiety, depression and QoL at 3-6 monthly intervals for 2 years beginning 3-48 months after diagnosis. AOCS asked about physical activity before diagnosis and 530 women also completed a one-off lifestyle questionnaire 7-64 months after diagnosis which assessed activity during their first and, if relevant, second-to-third and fourth-to-sixth years following diagnosis. Analysis of variance was used to relate physical activity to psychosocial outcomes., Results: Almost 40% of women decreased their physical activity in the first year after diagnosis. Approximately 25% still had lower levels after 2-3 and 4+years. Recent physical activity level was inversely associated with depression and positively associated with QoL (P<0.05). Also, women who maintained or increased their physical activity after diagnosis had better mean depression and QoL scores than women who decreased physical activity or remained inactive (P<0.05). Among women who received chemotherapy shortly prior to completing the lifestyle questionnaire, high versus low or medium physical activity was associated with significantly lower mean depression scores during both periods of treatment and non-treatment (P<0.05)., Conclusions: Many women did not regain their pre-morbid physical activity levels several years after ovarian cancer diagnosis. Low physical activity may simply be a consequence of poor well-being but, alternatively, physical activity may improve psychosocial health of this group., (Copyright © 2010 John Wiley & Sons, Ltd.)

Objective: To test the effect of three questions (what are my options? what are the benefits and harms? and how likely are these?), on information provided by physicians about treatment options., Methods: We used a cross-over trial using two unannounced standardized patients (SPs) simulating a presentation of mild-moderate depression. One SP was assigned the intervention role (asking the questions), the other the control role. An intervention and control SP visited each physician, order allocated randomly. The study was conducted in family practices in Sydney, Australia, during 2008-09. Data were obtained from consultation audio-recordings. Information about treatment options and patient involvement were analyzed using the Assessing Communication about Evidence and Patient Preferences (ACEPP) tool and the OPTION tool., Results: Thirty-six SP visits were completed (18 intervention, 18 control). Scores were higher in intervention consultations than controls: ACEPP scores 21.4 vs. 16.6, p<0.001, difference 4.7 (95% CI 2.3-7.0) and OPTION scores 36 vs. 25, p=0.001, difference 11.5 (95% CI 5.1-17.8), indicating greater information provision and behavior supporting patient involvement., Conclusion: Asking these three questions improved information given by family physicians and increased physician facilitation of patient involvement. Practice implications. These questions can drive evidence-based practice, strengthen patient-physician communication, and improve safety and quality., (Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.)

Purpose: There is a need for periodic review of research priorities in psycho-oncology. The purpose of this research was to conduct a qualitative study designed to canvass the views of health professionals working in psycho-oncology in Australia regarding current priority areas for research in psycho-oncology., Methods: This study was conducted in two phases. This article reports the results from the first phase, where focus groups were conducted with key researchers and clinicians active in psycho-oncology., Results: A total of 55 individuals took part in ten focus groups and two interviews. Participants identified 12 priority areas for research. These areas were grouped into four global themes given a significant overlap in the research issues identified. The four global themes are: distress-improving identification, detection, referral and management; specific populations requiring intervention research; the patient journey; and health services research. Key issues identified for each theme are documented along with participant quotes., Conclusions: This research provides the first steps in identifying research priorities in psycho-oncology and will guide the development of pertinent research studies as well as inform collaborative research studies focusing on clinically relevant interventions. The outcomes of such studies should ultimately guide optimal patient care.

Objective: Cancer patients increasingly expect to be involved in treatment decision-making. We investigated factors that motivate cancer doctors to involve their patients in treatment decisions., Methods: We conducted 22 telephone interviews with doctors treating breast, colorectal, gynaecological, haematological or prostate/urological cancer. Interviews probed doctors for attitudes to shared decision-making (SDM), views of when patient involvement is appropriate and what motivated them to encourage involvement. Interviews were audio-recorded. Themes were identified using framework analysis., Results: Cancer doctors described disease, patient, doctor and societal influences on their support for patient involvement in treatment decisions. Treatment recommendations were described as 'clear-cut' or 'grey'. When treatment options were clear-cut, the impact of treatment on patients' quality of life and self-image and the influence of consumer groups motivated doctors' support of patient involvement., Conclusion: Australian cancer doctors express differing support of patient involvement in decision-making dependent on context, impact and effect that involvement may have. Doctors described meeting patient involvement preferences as a challenge, and needing to identify different characteristics, anxiety levels and levels of understanding to guide them to involve patients in decisions., Practice Implications: Models of shared decision-making may warrant refinement to better guide doctors to elicit and discuss information and involvement preferences., (Copyright © 2010 Elsevier Ireland Ltd. All rights reserved.)

Purpose: Immigrants with cancer often have professional and/or family interpreters to overcome challenges communicating with their health team. This study explored the rate and consequences of nonequivalent interpretation in medical oncology consultations., Patients and Methods: Consecutive immigrant patients with newly diagnosed with incurable cancer, who spoke Arabic, Cantonese, Mandarin, or Greek, were recruited from the practices of 10 medical oncologists in nine hospitals. Their first two consultations were audio taped, transcribed, translated into English and coded., Results: Thirty-two of 78 participants had an interpreter at 49 consultations; 43% of interpreters were family, 35% professional, 18% both a professional and family, and 4% a health professional. Sixty-five percent of professional interpretations were equivalent to the original speech versus 50% for family interpreters (P= .02). Seventy percent of nonequivalent interpretations were inconsequential or positive; however, 10% could result in misunderstanding, in 5% the tone was more authoritarian than originally intended, and in 3% more certainty was conveyed. There were no significant differences in interpreter type for equivalency of interpretations., Conclusion: Nonequivalent interpretation is common, and not always innocuous. Our study suggests that there may remain a role for family or telephone versus face-to-face professional interpreters., Practice Implications: careful communication between oncologists and interpreters is required to ensure optimal communication with the patient.

Purpose: The literature highlights the confusion amongst women diagnosed with ductal carcinoma in situ (DCIS) about aspects of their disease and treatment and the wide variation in how doctors communicate about DCIS. The DCIS communication aid (CA) was developed to assist clinicians to communicate with women diagnosed with DCIS and to improve women's understanding about their disease, prognosis and treatment options. This study aimed to assess patient and clinician perceptions of the CA., Methods: The CA included information and diagrams about key aspects of the diagnosis, prognosis, treatment and support. It was designed to be used in clinical consultations and taken home after the consultation. Australian women with DCIS (n = 18) participated in structured interviews and clinicians (n = 7), including surgeons and radiation oncologists, completed surveys to assess their perceptions of the CA. Main outcome measures included satisfaction with the content, design and diagrams in the CA, and perceptions of the benefits of the CA and its impact on doctor-patient communication., Results: All clinicians and women with DCIS reported that the CA would assist communication and help women understand their diagnosis., Conclusions: This is the first intervention designed to decrease the confusion amongst women with DCIS and improve doctor-patient communication in this area. This study highlights that interventions such as the DCIS communication aid may be a valuable resource for clinicians and women with DCIS. This study also highlights key communication challenges relating to DCIS.

Although it is widely recognised that better coordination of cancer care holds considerable potential to improve patients' experience of care and their outcomes, there is no agreed definition of the term 'care coordination' or consensus as to what it entails. An explorative descriptive qualitative study was undertaken to explore the views and experiences of key stakeholders to identify the key components of cancer care coordination. We conducted semi-structured individual and focus groups interviews with patients (n= 20) who have been treated for any cancer and carers (n= 4) as well as clinicians (n= 29) involved in cancer care, using open-ended questions. Data were collected until saturation of concepts was reached. A phenomenological approach based on grounded theory was used to explore the participants' experiences and views. Seven key components were identified: organisation of patient care, access to and navigation through the healthcare system, the allocation of a 'key contact' person, effective communication and cooperation among the multidisciplinary team and other health service providers, delivery of services in a complementary and timely manner, sufficient and timely information to the patient and needs assessment. The components of cancer care coordination identified provide an empirical basis for the development of metrics and interventions to improve this aspect of cancer care., (© 2010 Blackwell Publishing Ltd.)

The appropriate use of artificial nutrition or hydration (ANH) for patients with advanced dementia continues to be a subject of debate. We investigated opinions of Dutch and Australian doctors about the use of ANH in patients with advanced dementia. We interviewed 15 Dutch doctors and 16 Australian doctors who care for patients with advanced dementia. We transcribed and analysed the interviews and held consensus meetings about the interpretation. We found that Dutch and Australian doctors use similar medical considerations when they decide about the use of ANH. In general, they are reluctant to start ANH. Disparities between the Dutch and Australian doctors are related to the process of decision-making: Dutch doctors seem to put more emphasis on a comprehensive assessment of the patient's actual situation, whereas Australian doctors are more inclined to use scientific evidence and advance directives. Furthermore, Dutch doctors take the primary responsibility themselves whereas Australian general practitioners seem to be more inclined to leave the decision to the family. It seems that Dutch and Australian doctors use somewhat different care approaches for patients with advanced dementia. Combining the Dutch comprehensive approach and the Australian analytic approach may serve the interest of patients and their families best.

Background: Existing literature suggests that the effectiveness of a support group is linked to the qualifications, skills and experience of the group leader. Yet, little research has been conducted into the experiences of trained vs. untrained support group leaders of chronic-illness support groups. The current study aimed to compare the experience of leaders, trained vs. untrained in group facilitation, in terms of challenges, rewards and psychological wellbeing., Methods: A total of 358 Australian leaders of cancer and multiple sclerosis (MS) support groups, recruited through State Cancer Councils and the MS society (response rate of 66%), completed a mailed survey., Results: Compared with untrained leaders, those with training were significantly younger, leading smaller groups and facilitating more groups, more frequently (all P < 0.05). Trained leaders were more likely to be female, educated beyond high school, paid to facilitate, a recipient of formal supervision and more experienced (in years) (all P < 0.01). Untrained leaders reported more challenges than trained leaders (P < 0.03), particularly struggling with being contacted outside of group meetings (52%) and a lack of leadership training (47%). Regardless of level of training, leaders identified a number of unmet support and training needs. Overwhelmingly, leaders found their facilitation role rewarding and the majority reported a high level of psychological wellbeing., Conclusions: Group facilitator training has the potential to reduce the burden of support group leadership. Developing interventions to assist support group leaders will be particularly beneficial for leaders with minimal or no training group facilitation training., (© 2010 The Authors. Health Expectations © 2010 Blackwell Publishing Ltd.)

Objectives: To assess the prevalence and predictors of depression and anxiety in women with ovarian cancer and their caregivers, to compare levels of depression and anxiety with community norms, and to explore the relationship between patients and their nominated caregivers., Design, Setting and Participants: Prospective cohort study of 798 women with invasive ovarian cancer recruited between 1 January 2002 and 30 June 2006 through the nationwide Australian Ovarian Cancer Study, and 373 of their caregivers., Main Outcome Measures: Depression and anxiety as assessed with the Hospital Anxiety and Depression Scale, and the role of demographic variables, disease and treatment variables, psychosocial variables, and use of mental health and support services as potential predictors., Results: Rates of anxiety and depression among patients were significantly lower than in previous reports, although clinical depression rates (5.9%) were significantly higher than community norms (3.0%; chi2 = 24.0; P < 0.001). Caregivers also reported higher levels of depression (chi2 = 21.1; P < 0.001) and anxiety (chi2 = 17.6; P < 0.001) compared with norms. There was no difference within patient-caregiver pairs for depression (P = 0.1), while caregivers reported significantly higher anxiety than patients (P < 0.01). In patients, higher symptom burden, lower optimism and current specialist mental health treatment all significantly predicted both depression and anxiety, while lower social support was a significant predictor of patient anxiety only. In caregivers, lower social support and lower optimism were significant predictors of depression and anxiety. Patients being treated for mental health was also a predictor of their caregiver's depression., Conclusions: While depression is significantly more common in women with ovarian cancer than in the general population, it is caregivers of such patients who report much higher levels of both subclinical and clinical depression and anxiety.

The estimated prevalence of insomnia in cancer patients varies between 20% and 50%, which is substantially higher than the general population. To date, little is known about the risk factors for insomnia in patients with cancer. This study examines the prevalence and predictors of insomnia in a population-based sample of women with ovarian cancer. Participants were 772 women participating in the Australian Ovarian Cancer Study - Quality of Life Study. Insomnia was assessed using the Insomnia Severity Index (ISI). Demographic, disease and treatment variables, and psychosocial variables, including anxiety and depression, support care needs and social support and coping, were investigated as potential predictors of insomnia. Twenty-seven percent of women reported sub-clinical symptoms of insomnia (ISI score 8-14) and 17% reported clinically significant insomnia (ISI score 15-28). Three variables were significant predictors of clinically significant insomnia: young age (<50 years: Odds Ratio (OR)=2.36; Confidence Interval (CI) 1.06-5.26; 50-59 years: OR=2.73; CI 1.33-5.64) relative to 70+ years; higher unmet needs in the physical/daily living domain (OR=1.02; CI 1.01-1.03) and elevated anxiety (sub-clinical anxiety (Hospital Anxiety and Depression Scale (HADS) score 8-10): OR=1.83; CI 1.04-3.24; clinical anxiety (HADS score 11-21): OR=2.03; CI 1.08-3.85). In contrast to predictors of primary insomnia, women with cancer aged <60 years were more likely to report clinical levels of insomnia than women of 70+ years. Consistent with primary insomnia, elevated anxiety predicted insomnia in women with ovarian cancer. Given that both anxiety and insomnia are relatively common, and the relationship may potentially be bi-directional, the efficacy of interventions targeting insomnia and anxiety, rather than insomnia alone, is worthy of consideration.