A qualitative exploration of the role of a palliative care pharmacist providing home-based care in the rural setting, from the perspective of health care professionals.

INTRODUCTION: Pharmacists are often not recognised as a core part of palliative care teams, despite their ideal placement to assist with the burden of medication management. OBJECTIVE: This study explored the role of pharmacists working in the rural palliative care team, in the home-based setting. DESIGN: Health care professionals working with palliative care patients in rural South Australia participated in semi-structured interviews. Data were analysed using thematic analysis. FINDINGS: Data from 20 participants identified 10 themes. Theme 1: This model of care gives patients a choice. Theme 2: The pharmacist is a trusted source of support and information. Theme 3: Patient, carer and family distress is reduced. Theme 4: Enables patients to stay at home by improving medication knowledge and decreasing burden; 4.1-Patient, carer and family's understanding about medication management is improved, 4.2-Patient, carer and family travel is decreased, 4.3-Burden associated with getting to the doctor is decreased. Theme 5: Communication between all parties is enhanced; 5.1-Enhanced communication between the patient and health care team, 5.2-Enhanced communication within the health care team. Theme 6: Patient, carer and family burden of coordinating prescriptions and medications is reduced. Theme 7: Benefits health care professionals by improving medication knowledge, reducing workload and stress; 7.1-Understanding about medications and their management is improved, 7.2-Workload is reduced, 7.3-Work-related stress is reduced. Theme 8: The disparity of care between rural and urban patients is reduced. Theme 9: Helps to address rural workforce shortages. Theme 10: Challenges of this model of care; 10.1-A need for greater pharmacist capacity to meet demand, 10.2-A need for increased and sustained funding for the pharmacist role, 10.3-Large amount of travel to get to patients. CONCLUSION: Rural health care professionals are supportive of pharmacists working as part of the palliative care team in home-based settings and identified many benefits of this model of care.

Understanding farmers' barriers to health and mental health-related help-seeking: The development, factor structure, and reliability of the Farmer Help-Seeking Scale.

PURPOSE: The aim of this research was to develop a contextually and culturally appropriate scale to assess farmers' barriers to health-related help-seeking. METHODS: An initial pool of items was developed from the academic literature and input from an expert panel of farmers, rural academics, and rural clinicians. A draft 32-item questionnaire was then developed and sent to farmers registered with FARMbase, which is an Australian national farmer database. FINDINGS: Two hundred and seventy-four farmers completed the draft questionnaire (93.7% male, 73.7% aged 56-75 years). An exploratory factor analysis identified 6 factors; "Health Issues are a Low Priority," "Concerns about Stigma," "Structural Health System Barriers," "Minimization and Normalization," "Communication Barriers," and "Continuity of Care.". Test-retest reliability was examined with a further 10 farmers (90% male, Mean age = 57, SD = 5.91), who completed the questionnaire twice (at 2- to 3-week intervals). Results indicated moderate-good test-retest reliability. CONCLUSIONS: The resulting 24-item Farmer Help-Seeking Scale provides a measure of help-seeking that is specifically designed to capture the unique context, culture, and attitudes that can interfere with farmers' help-seeking, and inform the development of strategies to increase health-service utilization in this at-risk group.

"Life Without Symptoms" or "Being Able to Enjoy Life": What does it Mean to be "Well" After Cancer?

OBJECTIVE: To achieve wellness in cancer survivorship, researchers and clinicians need a better understanding of what it means to live "well", from the perspective of cancer survivors themselves. METHODS: Australian and UK cancer survivors (N = 376) diagnosed in the previous five years, were asked "What does it mean to be well?", with an open-ended text response. Responses were coded using content analysis. Demographics, time since diagnosis, coping style and symptom level were also assessed. RESULTS: Descriptions of what it meant to be "well" were coded as absence-focused (living without negative impacts of illness, 32.7%) or presence-focused (living with health, function, or wellbeing, 37.8%). A further 29.5% of responses contained both elements. Lower symptom level and higher use of a fatalism coping style were associated with presence-focused definitions of being well. CONCLUSIONS: More meaningful conversations with cancer survivors about their goals for care would be facilitated by a better understanding of what it means to them to be "well". As symptoms change over the course of survivorship, it may be necessary to re-examine each survivor's goals of care.

What consumers, general practitioners and mental health professionals want: the co-design and prototype testing of a transdiagnostic, acceptance and commitment therapy-based online intervention to reduce distress and promote wellbeing among Australian adults.

BACKGROUND: Many Australians experience mental health challenges, but only a third access face-to-face psychological services, due to multiple barriers including long waitlists. Additional strategies to prevent or help people de-escalate distress at an early stage are needed. Web-based mental health interventions are becoming increasingly acceptable to consumers and referring General Practitioners (GPs), but most are designed for specific disorders/populations. This study explores consumers' and health professionals' preferences and recommendations for the design of a transdiagnostic, Acceptance and Commitment Therapy (ACT)-based, online intervention for Australian adults. METHODS: Thirty-five people (consumers, carers, GPs, mental health professionals) participated in one or more co-design stages. Stage 1: semi-structured interviews to establish what is wanted from such websites (n = 22). Stage 2: feedback emailed on branding options (n = 20). Stage 3: feedback provided via Zoom or an online survey after testing a website prototype (n = 19). Data were analysed using Thematic Framework Analysis and descriptive statistics. RESULTS: Stage 1 highlighted nine key design principles (plus 25 subthemes) that participants emphasised as important to ensure the website would have broad appeal and meet their needs: (1) user choice is valued highly; (2) ACT-based content is acceptable as it is focused on helping people be proactive and 'get unstuck'; (3) non-pathologising, direct, empowering, lay language is endorsed; (4) a positive look and feel is appreciated; (5) images and videos are important to break up text and maintain engagement; (6) short text messages to aid engagement are valued; (7) provision of tailored psychoeducation for highly distressed and suicidal users is endorsed; (8) personal and proactive brand name is preferred (icanactnow); (9) diverse marketing and training activities are recommended. In Stage 2, icanactnow branding preferences were elicited (simplicity, colours to represent growth and a call to action). Stage 3 resulted in the inclusion of a safety plan template and a tailored entry portal for people referred to icanactnow by health professionals. High levels of satisfaction with the prototype were reported. CONCLUSIONS: These findings informed icanactnow and provide insights for the development of other online mental health interventions, in ways that appeal to both consumers and professionals recommending them.

'It is a life changing experience': The experiences of living kidney donors who live in rural Australia.

INTRODUCTION: A growing body of research has examined the physical, psychological, social and financial impacts of living kidney donation. However, little is known about the unique experiences or additional burdens faced by living donors from regional or remote locations. OBJECTIVE: To explore the experiences of living kidney donors who live outside metropolitan centres and to determine how support services could be orientated to better meet their unique needs. DESIGN/SETTING/PARTICIPANTS: Seventeen living kidney donors participated in semistructured telephone interviews. Qualitative data were analysed using thematic analysis. FINDINGS: Eight themes were identified: (1) donor's emotional well-being is influenced by the recipient's outcome, (2) varied levels of access to medical support and other important services in rural areas, (3) travel takes a toll on time, finances and well-being, (4) varied level of financial impact, (5) medical, emotional and social challenges, (6) both lay and health professional support is valued, (7) varied levels of knowledge and experiences accessing information and (8) a worthwhile experience overall. CONCLUSION: Despite many challenges, and travel adding to the complexity, rural living kidney donors generally consider it to be a worthwhile experience. The provision of additional emotional, practical and educational support would be welcomed by this group.

Addressing the challenges of early career rural nursing to improve job satisfaction and retention: Strategies new nurses think would help.

AIMS: To (a) explore the experiences of early career registered nurses in rural hospitals in Australia and (b) identify strategies they believe would help increase job satisfaction and retention. DESIGN: Qualitative descriptive design. METHODS: Thirteen registered nurses located in outer regional, remote or very remote (herein 'rural') Australian hospitals participated in semi-structured interviews. Participants had graduated from a Bachelor of Nursing program in 2018-2020. Data were analyzed using thematic analysis and an essentialist, bottom-up approach. RESULTS: Seven themes related to the experiences of rural early career nursing: (1) appreciate diverse scope of practice; (2) rewarding sense of community and opportunity to give back; (3) staff support determines the quality of experience; (4) feeling underprepared and the need for ongoing education; (5) diverse views on the optimal length of rotation and level of input into choice of clinical area; (6) difficulty maintaining work/life balance due to work hours and rostering; and (7) lack of staff and resources. Strategies to improve nurses' experiences included: (1) assistance with accommodation and transport; (2) social gatherings to enhance connection; (3) sufficient orientation and supernumerary time; (4) increased frequency of contact with clinical facilitators and multiple mentors; (5) prioritizing clinical education across diverse topics; (6) greater involvement in choice of rotations and clinical areas; and (7) desire for more flexible work hours and rostering. CONCLUSIONS: This study highlighted the experiences of rural nurses and explored their suggestions for how to overcome challenges in their roles. Greater consideration of early career registered nurses' needs and preferences is vital to improving and maintaining a satisfied, dedicated and sustainable rural nursing workforce. IMPACT: Many of the strategies for improving job retention identified by nurses in this study could be actioned at a local level, with little financial or time investment. PATIENT OR PUBLIC CONTRIBUTION: No Patient or Public Contribution.

The nature and impact of patient and public involvement in cancer prevention, screening and early detection research: A systematic review.

Patient and public involvement can produce high-quality, relevant research that better addresses the needs of patients and their families. This systematic review investigated the nature and impact of patient and public involvement in cancer prevention, screening and early detection research. Two patient representatives were involved as members of the review team. Databases (Medline, EMBASE, Emcare, Involve Evidence Library) were searched for English-language studies published 1995-March 2022. Titles/abstracts were screened by two reviewers independently. For eligible studies, data were extracted on study characteristics, patient and public involvement (who, when, how, and impact on research outcomes), and reporting quality using the Guidance for Reporting Involvement of Patients and the Public 2-Short Form. Of 4095 articles screened, 58 were eligible. Most research was from the United States (81%) and examined cancer screening or prevention (82%). Community members/organisations/public were the most involved (71%); fewer studies involved patients and/or carers (14%). Over half reported a high-level of involvement (i.e. partner and/or expert involvement), although this declined in later stages of the research cycle, e.g. data analysis. Common positive impacts included improved study design, research methods and recruitment, although most papers (62%) did not describe methods to determine impact. Reporting quality was sub-optimal, largely due to failure to consider challenges. This review found that high-level involvement of patients and the public in cancer prevention, screening and early detection research is feasible and has several advantages. However, improvements are needed to encourage involvement across the research cycle, and in evaluating and reporting its impact.

A Self-Help Online Intervention Is Associated with Reduced Distress and Improved Mental Wellbeing in Australian Farmers: The Evaluation and Key Mechanisms of www.ifarmwell.com.au.

OBJECTIVES: Farmers are faced with many stressors, along with numerous barriers to accessing traditional forms of mental health support. The ifarmwell online intervention was co-designed with farmers and is informed by Acceptance and Commitment Therapy to equip farmers with transferable coping strategies, particularly to help them cope with circumstances beyond their control. We aimed to evaluate the effect of ifarmwell on farmers' short- and long-term distress and mental wellbeing. METHODS: Australian farmers (21-73 years) who registered on www.ifarmwell.com.au completed measures at the commencement of module 1 (N = 228), the end of the intervention (N = 77) and 6-months post-intervention (N = 61). Primary outcomes included distress (Kessler Psychological Distress Scale) and mental wellbeing (Mental Health Continuum - Short Form). We also examined the relationship between distress, mental wellbeing, neuroticism (Quickscales-R) and ACT-based psychological mechanisms; psychological inflexibility (Acceptance and Action Questionnaire-II), cognitive fusion (Cognitive Fusion Questionnaire), believability of automatic thoughts (Automatic Thoughts Questionnaire-B), coping via acceptance (4 items from the situational COPE) and mindfulness (Five Facet Mindfulness Questionnaire-Short Form). Secondary outcomes of acceptability (Client Satisfaction Questionnaire-8) and usability (System Usability Scale) were also explored. RESULTS: Pre- to post-intervention, farmers' distress decreased and mental wellbeing increased. These effects were maintained at 6-month follow-up. Changes in these outcomes were greatest for participants who entered the intervention with high baseline distress (߈= -0.59, 95%CI =[-0.70, -0.47]) and low mental wellbeing (߈= -0.33, 95%CI = [-0.47, -0.19]). Decreases in distress and increases in mental wellbeing were associated with decreases in psychological inflexibility, cognitive fusion, and believability of thoughts, and increases in coping via acceptance and mindfulness. Levels of satisfaction (M = 26.92/32) and usability (M = 84.70/100) were high, and 94.6% of participants said they would recommend ifarmwell to a friend in need of similar advice and tools. CONCLUSIONS: ifarmwell is an effective and usable intervention that is likely to help farmers reduce their levels of distress and improve their mental wellbeing, by improving their psychological flexibility, ability to focus on the present and accept things beyond their control, as well as by reducing the extent to which they believe unhelpful thoughts.

Web-Based Interventions to Help Australian Adults Address Depression, Anxiety, Suicidal Ideation, and General Mental Well-being: Scoping Review.

BACKGROUND: A large number of Australians experience mental health challenges at some point in their lives. However, in many parts of Australia, the wait times to see general practitioners and mental health professionals can be lengthy. With increasing internet use across Australia, web-based interventions may help increase access to timely mental health care. As a result, this is an area of increasing research interest, and the number of publicly available web-based interventions is growing. However, it can be confusing for clinicians and consumers to know the resources that are evidence-based and best meet their needs. OBJECTIVE: This study aims to scope out the range of web-based mental health interventions that address depression, anxiety, suicidal ideation, or general mental well-being and are freely available to Australian adults, along with their impact, acceptability, therapeutic approach, and key features. METHODS: The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines for scoping reviews (PRISMA-ScR [PRISMA extension for Scoping Reviews]) guided the review process. Keywords for the search were depression, anxiety, suicide, and well-being. The search was conducted using Google as well as the key intervention databases Beacon, Head to Health, and e-Mental Health in Practice. Interventions were deemed eligible if they targeted depression, anxiety, suicidal ideation, or general mental well-being (eg, resilience) in adults; and were web-based, written in English, interactive, free, and publicly available. They also had to be guided by an evidence-based therapeutic approach. RESULTS: Overall, 52 eligible programs were identified, of which 9 (17%) addressed depression, 15 (29%) addressed anxiety, 13 (25%) addressed general mental well-being, and 13 (25%) addressed multiple issues. Only 4% (2/52) addressed distress in the form of suicidal ideation. The most common therapeutic approach was cognitive behavioral therapy. Half of the programs guided users through exercises in a set sequence, and most programs enabled users to log in and complete the activities on their own without professional support. Just over half of the programs had been evaluated for their effectiveness in reducing symptoms, and 11% (6/52) were being evaluated at the time of writing. Program evaluation scores ranged from 44% to 100%, with a total average score of 85%. CONCLUSIONS: There are numerous web-based programs for depression, anxiety, suicidal ideation, and general well-being, which are freely and publicly available in Australia. However, identified gaps include a lack of available web-based interventions for culturally and linguistically diverse populations and programs that use newer therapeutic approaches such as acceptance and commitment therapy and dialectical behavior therapy. Despite most programs included in this review being of good quality, clinicians and consumers should pay careful attention when selecting which program to recommend and use, as variations in the levels of acceptability and impact of publicly available programs do exist.

Combining Farmers' Preferences With Evidence-Based Strategies to Prevent and Lower Farmers' Distress: Co-design and Acceptability Testing of ifarmwell.

BACKGROUND: Farming is physically and psychologically hazardous. Farmers face many barriers to help seeking from traditional physical and mental health services; however, improved internet access now provides promising avenues for offering support. OBJECTIVE: This study aims to co-design with farmers the content and functionality of a website that helps them adopt transferable coping strategies and test its acceptability in the broader farming population. METHODS: Research evidence and expert opinions were synthesized to inform key design principles. A total of 18 farmers detailed what they would like from this type of website. Intervention logic and relevant evidence-based strategies were mapped. Website content was drafted and reviewed by 2 independent mental health professionals. A total of 9 farmers provided detailed qualitative feedback on the face validity of the draft content. Subsequently, 9 farmers provided feedback on the website prototype. Following amendments and internal prototype testing and optimization, prototype usability (ie, completion rate) was examined with 157 registered website users who were (105/157, 66.9%) female, aged 21-73 years; 95.5% (149/156) residing in inner regional to very remote Australia, and 68.2% (107/157) "sheep, cattle and/or grain farmers." Acceptability was examined with a subset of 114 users who rated at least module 1. Interviews with 108 farmers who did not complete all 5 modules helped determine why, and detailed interviews were conducted with 18 purposively sampled users. Updates were then made according to adaptive trial design methodology. RESULTS: This systematic co-design process resulted in a web-based resource based on acceptance and commitment therapy and designed to overcome barriers to engagement with traditional mental health and well-being strategies-ifarmwell. It was considered an accessible and confidential source of practical and relevant farmer-focused self-help strategies. These strategies were delivered via 5 interactive modules that include written, drawn, and audio- and video-based psychoeducation and exercises, as well as farming-related jokes, metaphors, examples, and imagery. Module 1 included distress screening and information on how to speak to general practitioners about mental health-related concerns (including a personalized conversation script). Modules were completed fortnightly. SMS text messages offered personalized support and reminders. Qualitative interviews and star ratings demonstrated high module acceptability (average 4.06/5 rating) and suggested that additional reminders, higher quality audio recordings, and shorter modules would be useful. Approximately 37.1% (52/140) of users who started module 1 completed all modules, with too busy or not got to it yet being the main reason for non-completion, and previous module acceptability not predicting subsequent module completion. CONCLUSIONS: Sequential integration of research evidence, expert knowledge, and farmers' preferences in the co-design process allowed for the development of a self-help intervention that focused on important intervention targets and was acceptable to this difficult-to-engage group. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12617000506392; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=372526.

Confronting behaviour in palliative care: a qualitative study of the lived experience of nursing staff.

BACKGROUND: Little research examines the extent and impact of aggressive or uncomfortable 'confronting behaviour' experienced by palliative care nurses, despite palliative wards being an emotionally labile environment. METHODS: Qualitative data on nurses' experiences of confrontation were collected from 17 palliative care nurses at a major metropolitan hospital via a focus group and individual interviews. Data were analysed using inductive thematic analysis. FINDINGS: Results indicated that family members were the main perpetrators and tolerance of confrontation varied dependent on the characteristics of the aggressor. Confrontation was described as arising in response to grief, and because of misunderstandings of palliative care goals. Nurses reported a perceived lack of appreciation for their work from some patients' families and feelings of discontent with the nature and amount of structured support available following a confrontation. Informal workplace support helped nurses to deal with these incidents and, despite bad experiences, nurses affirmed their commitment to working in this area. CONCLUSION: The findings demonstrate the demands placed on nurses working in palliative care, and the importance of compassion in moderating the impact of a challenging environment.

Improving access to cancer information and supportive care services: A systematic review of mechanisms applied to link people with cancer to psychosocial supportive care services.

OBJECTIVE: Previous research has described the low uptake of psychosocial support services in people living with cancer. While characteristics of individuals using services have been examined, mechanisms applied to link individuals to support services are less frequently considered. This review aims to identify the mechanisms used to link people with cancer to support services and assess their impact. METHODS: Systematic searches of Pubmed, CINAHL, EMBASE and PsycINFO were conducted up to May 2020. Studies reporting service use associated with mechanisms to link adults with cancer to support services targeting emotional, informational, practical or social support needs were eligible. Eligible study designs included controlled trials, pre-post designs and observational studies. Study quality was assessed and a narrative synthesis of findings undertaken. RESULTS: A total of 10 papers (from 8,037 unique titles) were eligible. Testing the feasibility of the linkage mechanism was the primary aim in five (50%) studies. Three linkage mechanisms were identified: (a) outreach from the support service; (b) clinician recommendation/referral; (c) mailed invitation. Outreach was the most successful in connecting people with cancer to services (52%-90% use); clinician recommendation/referral was least successful (3%-28%). The impact of different linkage mechanisms for different demographic groups was not assessed. CONCLUSIONS: Outreach from services shows the most potential for increasing access to support services. However, the limited number of studies and limitations in the types of support services people with cancer were linked to, demonstrated the need for further work in this area. Identifying mechanisms that are effective for underserved, high-needs patient groups is also needed.

The Impact of Illness Perceptions and Coping Strategies on Use of Supportive Care for Cancer.

Despite evidence that survivorship support programmes enhance physical and psychosocial wellbeing, cancer patients and survivors often do not use these supportive care services. This study investigated the utility of the Common Sense Model of Self-Regulation for predicting supportive care use following cancer, and the mediating role of coping strategies. Cancer patients and survivors (n = 336 from Australia, n = 61 from the UK; 191 males, 206 females) aged 20-83 years (Mean (M) = 62.73, Standard Deviation (SD) = 13.28) completed an online questionnaire. Predictor variables were cognitive and emotional representations of cancer, as measured by the Illness Perception Questionnaire-Revised (IPQ-R), and problem- and emotion-focused coping strategies, as measured by the Brief-Coping Orientation to Problems Experienced inventory (Brief-COPE). The outcome variable was survivorship support programme use within the preceding month. Perceived personal control over cancer predicted supportive care use, but cancer-related emotional distress did not. Coping was an inconsistent mediator of the relationships. Problem-focused coping mediated the relationship between personal control and supportive care use; emotion-focused coping did not mediate between emotional responses to cancer and the uptake of survivorship support programmes. The Common Sense Model provides a useful framework for understanding survivorship support programme use. However, more clarity around the relationship between illness beliefs and coping is required.

Sexual satisfaction and sexual distress after cancer: The role of body image disruption, self-compassion, sexual pain and relationship satisfaction.

OBJECTIVE: To identify variables that correlate with sexual satisfaction and sexual distress among adult cancer survivors, and how these differ, providing a basis from which approaches to intervention may be identified. This study examined four key variables: body image disruption, self-compassion, relationship satisfaction and sexual pain, previously all linked to sexual quality of life. METHODS: A cross-sectional survey was conducted online, with participants (n = 113) recruited via cancer charities, support groups and sexual counsellors' networks. A multivariate multiple regression analysis was conducted to analyse relationships among variables. RESULTS: In a regression adjusted for age, sex and time since diagnosis, higher sexual distress was significantly associated with higher body image disruption (ß = 0.23; p = 0.024), lower self-compassion (ß = -0.29; p = 0.009) and higher sexual pain (ß = 0.39; p < 0.001); but not relationship satisfaction (ß = -0.08; p = 0.434). Higher sexual satisfaction was significantly associated with higher relationship satisfaction (ß = 0.35; p = 0.002) and lower sexual pain (ß = -0.29; p = 0.005), but not body image disruption (ß = -0.19; p = 0.089), or self-compassion (ß = 0.06; p = 0.614). Sexual pain had a significantly stronger association with sexual distress than sexual satisfaction; F (1, 84) = 18.29, p < 0.001. CONCLUSIONS: Sexual distress and sexual satisfaction are associated with different psycho-social correlates even though both are used as indicators of sexual health. Research should seek to further understand the differences in these two critical markers of sexual health, with these differences likely to highlight the need to match interventions to the nature of the sexual difficulties experienced following cancer treatment.

The role of illness perceptions and exercise beliefs in exercise engagement during treatment for cancer.

OBJECTIVES: This study examined whether exercise beliefs and illness perceptions were associated with changes in exercise behaviour following a cancer diagnosis. DESIGN: This study uses a cross-sectional survey of 366 adults with a diagnosis of cancer, who were currently receiving treatment. MAIN OUTCOME MEASURES: The main outcome measures are symptom severity, pre- and post-morbid exercise levels, exercise beliefs, and illness perceptions. RESULTS: The majority of participants decreased their level of exercise after diagnosis (Decreasers; 58.1%). Approximately a third increased participation (Increasers; 30.4%) and a small group maintained (Maintainers; 9.2%) their pre-diagnosis exercise levels. After controlling for symptom severity and time since cancer diagnosis, Decreasers reported lower Self-Efficacy for exercise, higher levels of belief in the Negative Impact on Cancer of exercise, lower levels of Personal Control, and less Emotional Representation of their illness, than Increasers. Decreasers also reported lower levels of Self-Efficacy for exercise than Maintainers. CONCLUSION: The results suggest that identifying unhelpful beliefs about the relationship between exercise and illness during cancer treatment and improving confidence and control of exercise through psycho-educational intervention could be an effective strategy for preventing cancer patients decreasing exercise following their diagnosis.

Influences on Public Perceptions of the Importance of, and Responsibility for, Supportive Care Following Cancer Diagnosis.

Comprehensive cancer services aim to provide support in all domains of care that impact distress: physical, emotional, family, practical and spiritual. The extent of provision, referral and utilisation of these services varies dramatically, suggesting a need to improve understanding of the importance of these services. The aim of this study was to assess Australian community views on the importance of supportive cancer care, the influence of individual difference variables and who is responsible for supportive care provision. An online survey of 369 members of the Australian general public measured demographic variables, experience of cancer, awareness of supportive care, attitude to psychological help seeking, health locus of control and self-efficacy for health. Supportive care importance in physical, emotional, family, practical and spiritual domains was measured on scales from 0 to 100. These were compared to perceived importance of treatment improvements. Perceptions of responsibility for the provision of care were also rated from 0 to 100. Only attitude to psychological help seeking reliably predicted perceived importance, which was uniformly lower for supportive care than treatment improvements. Survivors and their families were viewed as having a high level of responsibility for support, although those who attributed control of health to powerful others ascribed more responsibility to those within the healthcare system. Education of the general public is needed concerning what supportive care is, how it may be provided to patients and the benefits of these services.

Treatment and Outcomes for Central Nervous System Tumors in Australian Adolescents and Young Adults: A Population-Based National Study.

Purpose: While central nervous system (CNS) tumors account for only 10% of adolescent and young adult (AYA) cancers, they are the leading cause of cancer death in this age group. Using national data for Australia, we describe the presentation, treatment, and survival for AYAs diagnosed with CNS tumors. Methods: A population-based study of 15-24 year-olds diagnosed with CNS tumors (low- and high-grade glioma [LGG, HGG], medulloblastoma [MB], primitive neuroectodermal tumors [PNET], ependymoma [EP]) or other (e.g., low-grade neuronal tumor) between 2007 and 2012. Clinical details were extracted from hospital medical records for each patient. Treatment centers were classified as pediatric or adult services. Results: Two hundred seventy-five patients (129 LGG, 77 HGG, 23 MB, 10 PNET, 19 EP, 17 other) were identified, with 17% treated at pediatric hospitals. Symptoms (headache [53%], nausea [31%]) were present for a median of 3 weeks before consulting a health professional. Of LGG patients, 15% had radiotherapy (RT) and 12% chemotherapy (CT). Of HGG patients, 81% had RT and 75% CT. All MB and PNET were managed with surgery, and 74% of MB and 80% of PNET had both RT and CT. Treatment did not differ by treatment center type. Five-year survival for LGG and EP was over 80%, but was 42% for HGG and 20% for PNET. Conclusions: This national, population-based study indicates similar treatment for AYA patients with CNS tumors between pediatric and adult services. Poor outcomes for HGG and PNET patients highlight the need for clinical trials of novel approaches for these tumors.

Returning to Work After Cancer in Australia: What Facilitates a Positive Return to Work Experience?

Purpose This study examined the impact of task-based and relationship-based social support received in the workplace on cancer survivors' retrospective satisfaction with their return to work experience. Methods Cancer survivors (N = 159), completed an online questionnaire assessing their satisfaction with the return to work experience, overall job satisfaction, contact with employers and co-workers while absent, perceived task-based and relationship-based social support received at the time of returning to work, and the perceived emotional quality of workplace relationships. Results Survivors reported that contact with employers, but not co-workers, while absent from work was associated with a more positive return to work experience. Additionally, greater perceived task-based and relationship-based social support at the time of returning to work were significantly correlated with greater satisfaction with returning to work. Importantly, the impact of task-based and relationship-based social support was fully mediated by the perceived emotional quality of workplace relationships. Job satisfaction independently predicted variance in return to work satisfaction. Conclusions Supporting effective return to work after cancer involves consideration of the workplace social context. Greater resources are needed to help workplaces foster and maintain social connections with employees who are absent from work for cancer treatment.

Distress and problem assessment among people living with cancer from Culturally and Linguistically Diverse backgrounds.

OBJECTIVE: To examine whether routine assessment of distress, recommended as part of comprehensive cancer care, is utilised equally with culturally and linguistically diverse (CALD) vs non-CALD people living with cancer. METHODS: A medical records review of all patients attending cancer-specific treatment units at a single tertiary hospital in Melbourne, Australia between 2015-2018. Recording of administration of the Distress Thermometer and Problem Checklist (DT and PC) was extracted for all patients. Details regarding how the DT and PC (used together) was administered were extracted for a random sub-sample of 294 CALD patients and 294 matched non-CALD patients. RESULTS: A total of 6977 patients were identified (12.0% CALD). Just over half of the CALD (54.7%) and non-CALD (58.2%) patients had a recorded DT and PC (P > 0.05). For the sub-sample analysis, CALD patients were less likely to complete the form themselves (14.8% vs 75.9% non-CALD) and were more likely to have a family member complete the form (55.1% vs 15.1% non-CALD). CALD patients reported a similar level of distress to non-CALD patients. Distress scores for CALD and non-CALD patients were higher when family members completed the form. Provision of discussion, written information, referral offers and rates of referral acceptance were similar between CALD and non-CALD patients. CONCLUSIONS: Assessment of distress and associated problems, and the process following assessment, were similar for CALD and non-CALD patients. However, differences in how the form was completed highlight the need for further improvements to ensure that CALD patients are actively involved in their care.

Childhood cancer, age at diagnosis and educational attainment: A meta-analysis.

Despite improved mortality rates, cognitive and academic difficulties are evident in some childhood cancer survivor groups. This meta-analysis aims to determine whether: 1) survivors have lower educational attainment than non-cancer controls; 2) educational attainment varies according to cancer type (CNS versus non-CNS); and 3) whether an early age of diagnosis confers greater disadvantage. A systematic search utilising the terms "neoplasms", "childhood", "educational attainment" and other related terms retrieved 2256 records from Embase, Medline and PsycINFO. Eleven studies satisfied the inclusion criteria. Survivors were less likely than controls to graduate from high school (OR = 0.74, 95 % CI: [0.60; 0.92]) or university (OR = 0.74, 95 % CI: [0.58; 0.94]). Although educational attainment in survivors of CNS cancer is reduced, non-CNS cancer survivors tend to attain similar educational status to controls. Additionally, there is some evidence that a diagnosis prior to adolescence may reduce the likelihood of high school, but not university, graduation.