Australian Cancer Services Research Articles

Understanding experiences of cognitive decline and cognitive assessment from the perspectives of people with glioma and their caregivers: A qualitative interview study

BackgroundDespite the impact of cognitive decline during brain cancer care, implementing routine cognitive assessment can be challenging. Effective implementation of cognitive assessment necessitates an understanding of implementation from the patient perspective. However, little is known about how people with glioma and their caregivers experience cognitive changes, assessment and support. ObjectiveTo understand the lived experiences of changes in cognition for people with glioma and their caregivers including experiences of: i) perceived or objectively measured cognitive decline (or absence of decline); ii) cognitive assessment following diagnosis, and; iii) met and unmet cognition-related supportive care needs. DesignSemi-structured qualitative telephone interviews were conducted with people with gliomas and support persons and analysed using reflexive thematic analysis. Setting(s)Two Australian cancer services Participants18 people with glioma and caregivers MethodsSemi-structured qualitative telephone interviews were conducted with people with gliomas and caregivers and analysed using reflexive thematic analysis. ResultsPeople with glioma (n = 5) and caregivers (n = 13) completed interviews. Four themes were identified: Cognition needs to be considered within the context of glioma diagnosis and treatment; concerns about cognition were initially subordinate to survival but become important; there are challenges identifying and communicating about people with gliomas’ changes in cognition; cognition-related supportive care can be helpful but challenging for people with glioma and caregivers to identify and access. ConclusionsChanges to cognition can have considerable impacts of people with glioma and their caregivers which may be overshadowed by treatment and survival. A multi-disciplinary approach to timely cognitive screening, structured referral pathways, and communication with caregivers may provide opportunities for support. Registrationn/a Tweetable abstractIdentifying cognitive changes in people with glioma is important and challenging. A multidisciplinary approach and inclusion of care coordination and caregivers can help.

Staff- and service-level factors associated with organisational readiness to implement a clinical pathway for the identification, assessment, and management of anxiety and depression in adults with cancer

BackgroundOrganisational 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.MethodsMultidisciplinary 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.ResultsFourteen 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.ConclusionsReadiness 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 registrationThe 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.

Implementation and evaluation of a smoking cessation checklist implemented within Australian cancer services.

IntroductionThe detrimental impact of smoking tobacco can be mitigated when cancer patients quit smoking. Smoking cessation clinical pathways are inconsistently implemented within Australian cancer services. The aim of this study was to pilot test and evaluate the reach, adoption, and implementation of a smoking cessation checklist within oncology services.MethodsThe checklist was implemented over a 6‐month period in medical and radiation oncology services at two metropolitan and one rural hospital. The RE‐AIM framework guided the evaluation process. Implementation strategies included training, process mapping, and identifying champions. Evaluation measures included a clinical data audit, surveys, and semi‐structured interviews with healthcare professionals (HCPs).ResultsHealthcare professionals (HCPs; N = 63; 41% oncologists, 32% nurses, 27% others) completed 1276 checklists with cancer patients between November 2019 and December 2020. Of the 126 (10%) identified current smokers, 34 (27%) accepted a referral to either Quitline, Nicotine Replacement Therapy, to a general practitioner or dedicated HCP for follow‐up telephone support. There was variation in screening adoption by HCPs across the three hospitals, with 16%, 92% and 89.5% of patients screened respectively. Contextual factors, such as perceived commitment, role identity, and communication processes appeared to influence the outcomes.ConclusionA checklist is a simple, effective, and versatile intervention used to standardise smoking cessation practices in medical and radiation oncology services. The checklist supports standardisation of referral practices to smoking cessation services for cancer patients by either oncologist and/or nurses.

Putting Policy into Practice: How Three Cancer Services Perform against Indigenous Health and Cancer Frameworks.

Improving cancer outcomes for Indigenous people by providing culturally safe, patient-centred care is a critical challenge for health services worldwide. This article explores how three Australian cancer services perform when compared to two national best practice guidelines: the National Aboriginal and Torres Strait Islander Cancer Framework (Cancer Framework) and the National Safety and Quality Health Service (NSQHS) User Guide for Aboriginal and Torres Strait Islander Health (User Guide). The services were identified through a nationwide project undertaken to identify cancer services providing treatment to Indigenous cancer patients. A small number of services which were identified as particularly focused on providing culturally safe cancer care participated in case studies. Interviews were conducted with 35 hospital staff (Indigenous and non-Indigenous) and 8 Indigenous people affected by cancer from the three services. The interviews were analysed and scored using a traffic light system according to the seven priorities of the Cancer Framework and the six actions of the NSQHS User Guide. While two services performed well against the User Guide, all three struggled with the upstream elements of the Cancer Framework, suggesting that the treatment-focused Optimal Care Pathway for Aboriginal and Torres Strait Islander People with Cancer (Cancer Pathway) may be a more appropriate framework for tertiary services. This article highlights the importance of a whole-of-organisation approach when addressing and embedding the six actions of the User Guide. Health services which have successfully implemented the User Guide are in a stronger position to implement the Cancer Framework and Cancer Pathway.

\u201cThe support has been brilliant\u201d: experiences of Aboriginal and Torres Strait Islander patients attending two high performing cancer services

BackgroundImproving health outcomes for Indigenous people by providing person-centred, culturally safe care is a crucial challenge for the health sector, both in Australia and internationally. Many cancer providers and support services are committed to providing high quality care, yet struggle with providing accessible, culturally safe cancer care to Indigenous Australians. Two Australian cancer services, one urban and one regional, were identified as particularly focused on providing culturally safe cancer care for Indigenous cancer patients and their families. The article explores the experiences of Indigenous cancer patients and their families within the cancer services and ascertains how their experiences of care matches with the cancer services’ strategies to improve care.MethodsServices were identified as part of a national study designed to identify and assess innovative services for Indigenous cancer patients and their families. Case studies were conducted with a small number of identified services. In-depth interviews were conducted with Indigenous people affected by cancer and hospital staff. The interviews from two services, which stood out as particularly high performing, were analysed through the lens of the patient experience.ResultsEight Indigenous people affected by cancer and 23 hospital staff (Indigenous and non-Indigenous) were interviewed. Three experiences were shared by the majority of Indigenous cancer patients and family members interviewed in this study: a positive experience while receiving treatment at the cancer service; a challenging time between receiving diagnosis and reaching the cancer centre; and the importance of family support, while acknowledging the burden on family and carers.ConclusionsThis article is significant because it demonstrates that with a culturally appropriate and person-centred approach, involving patients, family members, Indigenous and non-Indigenous staff, it is possible for Indigenous people to have positive experiences of cancer care in mainstream, tertiary health services. If we are to improve health outcomes for Indigenous people it is vital more cancer services and hospitals follow the lead of these two services and make a sustained and ongoing commitment to strengthening the cultural safety of their service.

What factors influence organisational readiness for change? Implementation of the Australian clinical pathway for the screening, assessment and management of anxiety and depression in adult cancer patients (ADAPT CP).

Translation of evidence-based psycho-oncology interventions into routine care can significantly improve patient outcomes, yet effective implementation remains challenging due to numerous real-world barriers. A key factor that may influence implementation is organisational readiness for change. This mixed method study sought to identify factors associated with organisational readiness for implementing the Australian clinical pathway for the screening, assessment and management of anxiety and depression in adult cancer patients (ADAPT CP). We collected data from multidisciplinary staff across six Australian cancer services who were preparing to implement the ADAPT CP. Services were categorised as having 'high' versus 'mid-range' organisational readiness based on a median split on the Organizational Readiness for Implementing Change (ORIC) questionnaire (score range = 12-60). Qualitative data from the semi-structured interviews based on the Promoting Action Research in Health Services (PARiHS) framework were analysed thematically and compared for services with high- versus mid-range organisational readiness. Three services with high- (mean ORIC range, 52.25-56.88), and three with mid-range (range, 38.75-46.39) organisational readiness scores were identified. Staff at services reporting higher readiness described a more collaborative and proactive service culture, strong communication processes and greater role flexibility. They also reported greater confidence in overcoming anticipated barriers and clearer strategies for addressing issues. Levels of organisational readiness were related to distinct qualitative themes. Targeting these issues in services where readiness is mid-range or low prior to full-scale roll-out may improve staff levels of confidence and efficacy in implementing psycho-oncology-focused interventions.

Hospital policies on complementary medicine: a cross‐sectional survey of Australian cancer services

Hospital policies on complementary medicine: a cross‐sectional survey of Australian cancer services

Pin-pointing service characteristics associated with implementation of evidence-based distress screening and management in australian cancer services: data from a crosssectional study

Pin-pointing service characteristics associated with implementation of evidence-based distress screening and management in australian cancer services: data from a crosssectional study

Finding the value in oncology massage: A mixed-method study of cancer services and survivors in Australia

ObjectivesThis study aimed to quantify massage service provision by Australian cancer services and explore providers’ and survivors’ views about massage services. DesignA mixed-method study design combined data from a national cross-sectional survey of cancer services, an on-line survey of cancer survivors, and focus group or individual interviews with cancer survivors. MethodsQuantitative and qualitative analyses of the data were merged using the principles of triangulation analysis for a thematic analysis. ResultsThree meta-themes were identified: 1) an under provision of high-quality massage services; 2) the perceived benefits of massage extend beyond symptomatic relief; and 3) the interrelated barriers to massage service provision and access reflect different values.Response rate for the national cancer services survey was 93.2% (n = 275/295), of which 18.1% (n = 50/275) provided massage. Service provision was not evenly distributed across the country with gaps in many regions. The 121 survivors who answered the online survey and 31 survivors who participated in the interviews affirmed this finding. Quality control was an important reason why survivors wanted cancer services to offer massage. Survivors reported numerous benefits from massage and valued the ‘human touch’.Overwhelmingly, finance was the greatest barrier that was interrelated with other barriers such as finding suitably qualified massage therapists and various information, evidence and logistical constraints. Conflicting findings included survivors stating the unavailability of massage services was an important barrier, whereas services reported low patient demand as a reason for not providing massage. An explanation given for not funding or using massage was the tendency to downplay the value of massage as a non-essential service; an attitude that was strongly refuted by some. ConclusionsMassage is yet to be firmly established in cancer care across Australia. Balancing different views about the value of massage in supportive cancer care will be key to informing appropriate funding and service delivery.

A cross-sectional audit of current practices and areas for improvement of distress screening and management in Australian cancer services: is there a will and a way to improve?

It is unknown how many distressed patients receive the additional supportive care recommended by Australian evidence-based distress management guidelines. The study identifies the (1) distress screening practices of Australian cancer services; (2) barriers to improving practices; and (3) implementation strategies which are acceptable to service representatives interested in improving screening practices. Clinic leads from 220 cancer services were asked to nominate an individual involved in daily patient care to complete a cross-sectional survey on behalf of the service. Questions related to service characteristics; screening and management processes; and implementation barriers. Respondents indicated which implementation strategies were suitable for their health service. A total of 122 representatives participated from 83 services (51%). The majority of respondents were specialist nurses or unit managers (60%). Approximately 38% of representatives' services never or rarely screen; 52% who screen do so for all patients; 55% use clinical interviewing only; and 34% follow referral protocols. The most common perceived barriers were resources to action screening results (74%); lack of time (67%); and lack of staff training (66%). Approximately 65% of representatives were interested in improving practices. Of the 8 implementation strategies, workshops (85%) and educational materials (69%) were commonly selected. Over half (59%) indicated a multicomponent implementation program was preferable. Although critical gaps across all guideline components were reported, there is a broad support for screening and willingness to improve. Potential improvements include additional services to manage problems identified by screening, more staff time for screening, additional staff training, and use of patient-report measures.

Australian cancer services: a survey of providers’ efforts to meet the needs of Indigenous patients

Objective:To examine where Indigenous Australians undergo cancer treatment and learn about specific service initiatives that have been implemented to meet their needs. Methods:Public cancer treatment centres across Australia were invited to participate in an online survey about various characteristics of their centre, including the type of service provided, Indigenous patient numbers and policy, and implementation of Indigenous‐specific initiatives. Results:Surveys were completed for 58 of 125 public cancer treatment centres. Almost half (47%) of the services saw more than 10 Indigenous patients per year, although Indigenous patients generally represented a small minority of patients. The most commonly reported initiatives were “having links with Indigenous health organisations in the community” (74% of services), “making a dedicated effort to address the needs of Indigenous patients” (69%) and proactively “creating partnerships with Indigenous communities and health organisations” (69%). Conclusions:The majority of respondents indicated that they were working to meet the needs of Indigenous patients and were interested in learning strategies from others to improve their services. More work is needed to describe and evaluate the specific initiatives that have been implemented. Implications for public health:Information from this study can assist cancer service providers to identify gaps in current services, plan new service delivery initiatives and ultimately improve Indigenous cancer outcomes.

Developmentally appropriate care for adolescents and young adults with cancer: how well is Australia doing?

Developmentally appropriate care underpins quality cancer treatment. This study aimed to describe how well Australian cancer services deliver patient-focussed, developmentally appropriate care to adolescents and young adults (AYAs) with cancer. In a national, cross sectional study, 196 AYAs with cancer aged between 15 and 25years at diagnosis reported their general experiences of the cancer care team (Cancer Needs Questionnaire), access to age-appropriate treatment environments (Cancer Needs Questionnaire) and frequency of psychosocial assessment (Adolescent Friendly Hospital Survey). Very positive responses were reported around engagement and communication with staff who were reported as approachable, friendly and trustworthy; 11 of the 14 items were positively rated by over 90% of respondents. In contrast, over 70% of AYAs expressed unmet need around their physical and social environments, whether in relation to the opportunity to be nursed in wards designed for AYAs, spend time with other young people with cancer, or talk to young people their own age; less than a third reported their needs had been met on the majority of these items. The frequency that specific psychosocial assessment domains were discussed was highly variable; responses suggested that AYAs were less commonly questioned about overtly sensitive topics. AYAs who experienced private consultations with health care providers (41%) were significantly more likely to experience thorough psychosocial assessment. Australian cancer services are generally communicating well with AYAs. There is room for improvement around more developmentally specific aspects of healthcare quality, such as psychosocial assessment, and around treatment environments that promote greater social interaction between AYAs.

Survivorship Care, the Poor Cousin of Australian Cancer Services: Findings From a National Cross-Sectional Survey

Background: The significant role of survivorship care in improving the outcomes and experiences of cancer survivors is increasingly being recognised. In response to the changing health service landscape in Australia, this study aimed to map cancer services and identify important service gaps and factors associated with service provision. Methods: A mixed-method, prospective, cross-sectional survey was conducted throughout 2016. Government or privately-owned, hospital or community-based healthcare organisations with dedicated cancer services were identified. Each organisation was invited to nominate a staff member to answer a purpose specific online/paper questionnaire. Included was an open-ended question that asked about the most important unmet service needs and gaps in their region. Descriptive statistics, standardised rates, and single level and multilevel multinomial logistic regression were used to analyse the data that was augmented with a qualitative descriptive analysis. Findings: Of the 295 eligible organisations that were identified, 93·2% responded. After adjusting for remoteness, compared to government operated services, for-profit companies were significantly more likely to provide only one or two types of cancer services (e.g. radiotherapy) in a limited range of settings (e.g. day hospital with no in-patient or home care) (p<0·001) and less likely to provide comprehensive survivorship services (p<0·001). Survivorship services, either during or after treatment (e.g. allied health, psychosocial support) were most commonly identified by providers as the most pressing service gaps in major cities, rural and remote regions alike. This included the need for improved integration, outreach and affordability of these services. After adjusting for ownership and the respondent's role in the organisation, compared to major cities, remote regions of Australia were more likely to have service gaps that are dependent upon specialist oncology services (p=0.003). Interpretation: The findings from this survey provide intelligence for health service planning and policy in Australia along with insights for other countries with mixed public-private healthcare. Despite being a high-income country with well-established prevention, primary and secondary care, the challenge of providing equitable care across the continuum of cancer care persists. The low rate of service survivorship services in the for-profit sector suggests that current policies are failing to incentivise their provision. The results support calls for innovative service models and funding mechanisms that shift the focus from cancer to the survivor and deliver integrated and equitable cancer care across both the public and private health sectors. Funding: Western Sydney University in partnership with South West Sydney Local Health District and Oncology Massage Ltd. Declaration of Interests: Authors CS, JH, KT and SG are academic researchers at NICM Health Research Institute. The institute receives research grants and donations from foundations, universities, government agencies, individuals and industry. Sponsors and donors provide untied funding for work to advance the vision and mission of the institute. The project that is the subject of this article was not undertaken as part of a contractual relationship with any donor or sponsor. Author GD is Director of Cancer Services for the South Western Sydney Local Health District and Director of Liverpool Cancer Centre in Australia. Author JH is a general practitioner with a clinical interest in evidence-based integrative medicine. Author SG works as an acupuncturist at the Chris O’Brien Lifehouse cancer treatment center in Camperdown, Australia. Author JU is an academic researcher at the Translational Research Institute that receives research grants from foundations, universities, government agencies, and industry. The institute and JU have no competing interests to declare. Ethics: Approval was obtained from Western Sydney University Human Research Ethic Committee (HREC) (H11389) and the Joint University of Wollongong and Illawarra Shoalhaven Local Health District Health and Medical HREC (HREC/16/WGONG/178).

Guidance for establishing an integrative oncology service in the Australian healthcare setting-a discussion paper.

There is an obvious mismatch between the high reported rates of use of traditional and complementary medicines (T&CM) by Australian cancer patients and cancer survivors and the low numbers of Australian cancer services integrating T&CM. An estimated 65% of Australian cancer patients use at least one form of T&CM. Over half use T&CM in conjunction with conventional cancer therapy. Yet, less than 20% of Australian hospital cancer care facilities provide access to T&CM. This compares to around 70% of UK cancer care facilities offering at least one T&CM therapy. Barriers to developing integrative oncology services include determining an appropriate service model and revenue structure; concerns with ethical and legal issues such as regulations and credentialing; and inadequate high-quality scientific evidence demonstrating safety and effectiveness, including concerns about the possibility of adversely affecting chemotherapy or radiotherapy treatment. This paper aims to provide general guidance and practical strategies for those seeking to develop integrative oncology services in Australian cancer care facilities.

Integration of complementary and alternative medicine into cancer-specific supportive care programs in Australia: A scoping study.

The main aim of this research was to describe the availability and integration of supportive care programs (SCPs), particularly complementary and alternative medicine (CAM) services, for adults in Australian oncology treatment centers. We systematically searched 124 Australian hospitals listed as having an oncology department out of a total of 1157 hospitals listed in the Australian Hospitals and Aged Care Databases (2014), and assessed their website and relevant leaflets. Direct contact was made with a relevant staff member in each hospital. Data were collected regarding the range of SCP and CAM services available. Of the 124 hospitals, 89 (72%) provide nonspecific guidance to SCP or a staff member (e.g. social worker or care coordinator) who directs patients, advising them about SCP; 35 hospitals (28%) provide active referral to SCP, of which 24 of 35 (69%) include CAM in their service, with individual variation in how it is incorporated. Only 11 (46%) of these 24 CAM incorporated oncology centers in Australia provided systematically integrated CAM programs. The majority of Australian oncology departments do not have CAM incorporated into their services. In those that do, less than half had systemically integrated CAM. The types of CAM available, how they are accessed and how they are integrated varied across hospitals. Further research is required to understand how to successfully and systematically integrate cancer-specific supportive care such as CAM into Australian cancer services.