The impact of a regionally based translational cancer research collaborative in Australia using the FAIT methodology.

BACKGROUND: Translating research, achieving impact, and assessing impact are important aspirations for all research collaboratives but can prove challenging. The Hunter Cancer Research Alliance (HCRA) was funded from 2014 to 2021 to enhance capacity and productivity in cancer research in a regional centre in Australia. This study aimed to assess the impact and benefit of the HCRA to help inform future research investments of this type. METHOD: The Framework to Assess the Impact from Translational health research (FAIT) was selected as the preferred methodology. FAIT incorporates three validated methodologies for assessing impact: 1) Modified Payback; 2) Economic Analysis; and 3) Narrative overview and case studies. All three FAIT methods are underpinned by a Program Logic Model. Data were collected from HCRA and the University of Newcastle administrative records, directly from HCRA members, and website searches. RESULTS: In addition to advancing knowledge and providing capacity building support to members via grants, fellowships, scholarships, training, events and targeted translation support, key impacts of HCRA-member research teams included: (i) the establishment of a regional biobank that has distributed over 13,600 samples and became largely self-sustaining; (ii) conservatively leveraging $43.8 M (s.a.$20.5 M - $160.5 M) in funding and support from the initial $9.7 M investment; (iii) contributing to clinical practice guidelines and securing a patent for identification of stem cells for endometrial cell regeneration; (iv) shifting the treatment paradigm for all tumour types that rely on nerve cell innervation, (v) development and implementation of the world's first real-time patient treatment verification system (Watchdog); (vi) inventing the effective 'EAT' psychological intervention to improve nutrition and outcomes in people experiencing radiotherapy for head and neck cancer; (vi) developing effective interventions to reduce smoking rates among priority groups, currently being rolled out to disadvantaged populations in NSW; and (vii) establishing a Consumer Advisory Panel and Consumer Engagement Committee to increase consumer involvement in research. CONCLUSION: Using FAIT methodology, we have demonstrated the significant impact and downstream benefits that can be achieved by the provision of infrastructure-type funding to regional and rural research collaboratives to help address inequities in research activity and health outcomes and demonstrates a positive return on investment.

The dynamic relationship between cancer and employment-related financial toxicity: an in-depth qualitative study of 21 Australian cancer survivor experiences and preferences for support.

BACKGROUND: People with a cancer diagnosis experience physical and emotional impacts that may affect employment. Alongside cancer care costs, reduced ability to generate an income is a key contributor to financial toxicity which is associated with poor emotional wellbeing, quality of life, treatment adherence and survival. This study aimed to explore people's experiences of changes to employment and their suggestions for how cancer survivors can be better supported. METHODS: Semi-structured telephone interviews were conducted with a purposive sample of 21 cancer survivors identified as part of a larger study of emotional distress. Purposive sampling was used to include a diverse group of people across age, gender, tumour type, self-reported financial difficulties and employment status. Interviews were inductively and iteratively coded by two independent coders and analysed using thematic analysis. RESULTS: There is a dynamic relationship between a person's cancer treatment and their employment. For some, employment was disrupted due to physical or emotional impacts of cancer, or workplace stigma and discrimination. Others continued to work at the detriment of their health. Participants wished they had been made aware earlier how cancer might impact their capacity to work, their finances and their health. There was a lack of knowledge on the financial supports that may be available to them. CONCLUSIONS: Healthcare professionals may have a role in minimising the financial impact of a cancer diagnosis through early assessment, communication of patients' potential work capacity and appropriate referrals to occupational therapy to aid return to work or financial planning. A robust government social support system specifically for households experiencing cancer is urgently required.

A qualitative study investigating Australian cancer service outpatients' experience of distress screening and management: what is the personal relevance, acceptability and improvement opportunities from patient perspectives?

PURPOSE: People diagnosed with cancer experience high distress levels throughout diagnosis, treatment, and survivorship. Untreated distress is associated with poor outcomes, including worsened quality of life and higher mortality rates. Distress screening facilitates need-based access to supportive care which can optimize patient outcomes. This qualitative interview study explored outpatients' perceptions of a distress screening process implemented in an Australian cancer center. METHODS: Adult, English-speaking cancer outpatients were approached to participate in face-to-face or phone interviews after being screened by a clinic nurse using the distress thermometer (DT). The piloted semi-structured interview guide explored perceptions of the distress screening and management process, overall well-being, psychosocial support networks, and improvement opportunities for distress processes. Thematic analysis was used. RESULTS: Four key themes were identified in the 19 interviews conducted. Distress screening was found to be generally acceptable to participants and could be conducted by a variety of health professionals at varied time points. However, some participants found "distress" to be an ambiguous term. Despite many participants experiencing clinical distress (i.e., DT ≥ 4), few actioned referrals; some noted a preference to manage and prevent distress through informal support and well-being activities. Participants' diverse coping styles, such as positivity, acceptance, and distancing, also factored into the perceived value of screening and referrals. CONCLUSION AND IMPLICATIONS: Screening models only measuring severity of distress may not be sufficient to direct care referrals, as they do not consider patients' varying coping strategies, external support networks, understanding of distress terminology, and motivations for accessing supportive care services.

Long-Term Health-Related Quality of Life Outcomes Following Thyroid Surgery for Malignant or Benign Disease: Deficits Persist in Cancer Survivors Beyond Five Years.

BACKGROUND: Thyroid cancer diagnoses are increasing and treatment can lead to significant morbidity. Long-term health-related quality of life (HRQoL) in thyroid cancer is understudied and lacks reference populations. This study compares long-term HRQoL between patients with thyroid cancer or benign disease, following thyroid surgery. METHODS: Patients undergoing thyroidectomy between 2000 and 2017 were identified from a pathology database. 696 participants (278 malignant, 418 benign) were invited to complete a validated disease-specific HRQoL tool, City of Hope-Thyroid Version. Propensity scores were used to adjust for demographic and clinical differences between cohorts. RESULTS: 206 patients (102 malignant, 104 benign), 71% female, returned surveys a median of 6.5 (range 1-19) years after thyroidectomy. Of the cancer cohort, 95% had differentiated thyroid cancer and 83% remained disease-free. There were no significant differences in overall HRQoL scores between groups. In comparison to the benign cohort, cancer patients showed a significant detriment in the social subdomain score (OR 0.10-0.96, p = 0.017) but not in other subdomains (physical, psychological, spiritual). Female gender, increasing BMI and cancer recurrence were significantly associated with decreased overall HRQoL. Compared to the benign cohort, cancer patients reported more personal and family distress associated with diagnosis and treatment, increased future uncertainty, poorer concentration and greater financial burden. CONCLUSION: Although no difference in overall HRQoL was found between patients undergoing thyroidectomy for benign or malignant disease, detriments in social well-being may persist many years after surgery. Thyroid cancer patients and their families may benefit from increased supports around the time of diagnosis and treatment.

Distress screening and supportive care referrals used by telephone-based health services: a systematic review.

PURPOSE: People affected by chronic diseases such as cancer report high levels of distress and a need for psychosocial support. It is unclear whether telephone-based services for people affected by chronic disease are a practical setting for implementing distress screening, referral protocols and rescreening to direct supportive care where it is needed. This systematic review aimed to describe the published literature regarding distress screening and supportive care referral practices in telephone-based services for people affected by chronic diseases such as cancer. METHODS: A systematic literature search of MEDLINE, Embase, PsycInfo, CINAHL, Cochrane and Scopus was conducted in February 2018. Included quantitative studies involved: patients or caregivers affected by chronic diseases including cancer and describe a health service assessing psychosocial needs or distress via telephone. Extracted data included the type of cancer or other chronic disease, sample size, screening tool, referral or rescreening protocols, and type of health service. RESULTS: The search identified 3989 potential articles with additional searches returning 30 studies (n = 4019); fourteen were eligible for full-text review. Of the 14 studies, 13 included cancer patients. Studies were across multiple settings and identified nine distress screening tools in use. CONCLUSION: The reviewed studies indicate that validated distress-screening tools are being used via telephone to identify distress, particularly in relation to cancer. Screening-driven supportive care referrals are also taking place in telephone-based services. However, not all services use an established referral protocol. Ongoing rescreening of callers' distress is also limited despite it being an important recommendation from psycho-oncology guidelines.

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?

BACKGROUND: 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. METHOD: 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. RESULTS: 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. CONCLUSIONS: 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.

Consumer input into health care: Time for a new active and comprehensive model of consumer involvement.

BACKGROUND: To ensure the provision of patient-centred health care, it is essential that consumers are actively involved in the process of determining and implementing health-care quality improvements. However, common strategies used to involve consumers in quality improvements, such as consumer membership on committees and collection of patient feedback via surveys, are ineffective and have a number of limitations, including: limited representativeness; tokenism; a lack of reliable and valid patient feedback data; infrequent assessment of patient feedback; delays in acquiring feedback; and how collected feedback is used to drive health-care improvements. OBJECTIVES: We propose a new active model of consumer engagement that aims to overcome these limitations. This model involves the following: (i) the development of a new measure of consumer perceptions; (ii) low cost and frequent electronic data collection of patient views of quality improvements; (iii) efficient feedback to the health-care decision makers; and (iv) active involvement of consumers that fosters power to influence health system changes.

Getting right to the point: identifying Australian outpatients' priorities and preferences for patient-centred quality improvement in chronic disease care.

OBJECTIVES: To identify specific actions for patient-centred quality improvement in chronic disease outpatient settings, this study identified patients' general and specific preferences among a comprehensive suite of initiatives for change. DESIGN AND SETTING: A cross-sectional survey was conducted in three hospital-based clinics specializing in oncology, neurology and cardiology care located in New South Wales, Australia. PARTICIPANTS AND MEASURES: Adult English-speaking outpatients completed the touch-screen Consumer Preferences Survey in waiting rooms or treatment areas. Participants selected up to 23 general initiatives that would improve their experience. Using adaptive branching, participants could select an additional 110 detailed initiatives and complete a relative prioritization exercise. RESULTS: A total of 541 individuals completed the survey (71.1% consent, 73.1% completion). Commonly selected general initiatives, presented in order of decreasing priority (along with sample proportion), included: improved parking (60.3%), up-to-date information provision (15.0%), ease of clinic contact (12.9%), access to information at home (12.8%), convenient appointment scheduling (14.2%), reduced wait-times (19.8%) and information on medical emergencies (11.1%). To address these general initiatives, 40 detailed initiatives were selected by respondents. CONCLUSIONS: Initiatives targeting service accessibility and information provision, such as parking and up-to-date information on patient prognoses and progress, were commonly selected and perceived to be of relatively greater priority. Specific preferences included the need for clinics to provide patient-designated parking in close proximity to the clinic, information on treatment progress and test results (potentially in the form of designated brief appointments or via telehealth) and comprehensive and trustworthy lists of information sources to access at home.

A systematic review of barriers to optimal outpatient specialist services for individuals with prevalent chronic diseases: what are the unique and common barriers experienced by patients in high income countries?

Health utilization and need assessment data suggest there is considerable variation in access to outpatient specialist care. However, it is unclear if the types of barriers experienced are specific to chronic disease groups or experienced universally. This systematic review provides a detailed summary of common and unique barriers experienced by chronic disease groups when accessing and receiving care, and a synthesized list of possible health service initiatives to improve equitable delivery of optimal care in high-income countries. Quantitative articles describing barriers to specialist outpatient services were retrieved from CINAHL, MEDLINE, Embase, and PyscINFO. To be eligible for review, studies: were published from 2002 to May 2014; included samples with cancer, diabetes mellitus, osteoporosis, arthritis, ischaemic heart disease, stroke, asthma, chronic pulmonary disorder (COPD) or depression; and, were conducted in high-income countries. Using a previously validated model of access (Penchansky and Thomas' model of fit), barriers were grouped according to five overarching domains and defined in more detail using 33 medical subject headings. Results from reviewed articles, including the scope and frequency of reported barriers, are conceptualized using thematic analysis and framed as possible health service initiatives. A total of 3181 unique records were screened for eligibility, of which 74 studies were included in final analysis. The largest proportion of studies reported acceptability barriers (75.7 %), of which demographic disparities (44.6 %) were reported across all diseases. Other frequently reported barriers included inadequate need assessment (25.7 %), information provision (32.4 %), or health communication (20 %). Unique barriers were identified for oncology, mental health, and COPD samples. Based on the scope, frequency and measurement of reported barriers, eight key themes with associated implications for health services are presented. Examples include: common accommodation and accessibility barriers caused on service organization or physical structure, such as parking and appointment scheduling; common barriers created by poor coordination of care within the healthcare team; and unique barriers resulting from inadequate need assessment and referral practices. Consideration of barriers, across and within chronic diseases, suggests a number of specific initiatives are likely to improve the delivery of patient-centered care and increase equity in access to high-quality health services.

Consumer participation in quality improvements for chronic disease care: development and evaluation of an interactive patient-centered survey to identify preferred service initiatives.

BACKGROUND: With increasing attention given to the quality of chronic disease care, a measurement approach that empowers consumers to participate in improving quality of care and enables health services to systematically introduce patient-centered initiatives is needed. A Web-based survey with complex adaptive questioning and interactive survey items would allow consumers to easily identify and prioritize detailed service initiatives. OBJECTIVE: The aim was to develop and test a Web-based survey capable of identifying and prioritizing patient-centered initiatives in chronic disease outpatient services. Testing included (1) test-retest reliability, (2) patient-perceived acceptability of the survey content and delivery mode, and (3) average completion time, completion rates, and Flesch-Kincaid reading score. METHODS: In Phase I, the Web-based Consumer Preferences Survey was developed based on a structured literature review and iterative feedback from expert groups of service providers and consumers. The touchscreen survey contained 23 general initiatives, 110 specific initiatives available through adaptive questioning, and a relative prioritization exercise. In Phase II, a pilot study was conducted within 4 outpatient clinics to evaluate the reliability properties, patient-perceived acceptability, and feasibility of the survey. Eligible participants were approached to complete the survey while waiting for an appointment or receiving intravenous therapy. The age and gender of nonconsenters was estimated to ascertain consent bias. Participants with a subsequent appointment within 14 days were asked to complete the survey for a second time. RESULTS: A total of 741 of 1042 individuals consented to participate (71.11% consent), 529 of 741 completed all survey content (78.9% completion), and 39 of 68 completed the test-retest component. Substantial or moderate reliability (Cohen's kappa>0.4) was reported for 16 of 20 general initiatives with observed percentage agreement ranging from 82.1%-100.0%. The majority of participants indicated the Web-based survey was easy to complete (97.9%, 531/543) and comprehensive (93.1%, 505/543). Participants also reported the interactive relative prioritization exercise was easy to complete (97.0%, 189/195) and helped them to decide which initiatives were of most importance (84.6%, 165/195). Average completion time was 8.54 minutes (SD 3.91) and the Flesch-Kincaid reading level was 6.8. Overall, 84.6% (447/529) of participants indicated a willingness to complete a similar survey again. CONCLUSIONS: The Web-based Consumer Preferences Survey is sufficiently reliable and highly acceptable to patients. Based on completion times and reading level, this tool could be integrated in routine clinical practice and allows consumers to easily participate in quality evaluation. Results provide a comprehensive list of patient-prioritized initiatives for patients with major chronic conditions and delivers practice-ready evidence to guide improvements in patient-centered care.

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

Background: Despite 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. Objective: To 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. Design: Semi-structured qualitative telephone interviews were conducted with people with gliomas and support persons and analysed using reflexive thematic analysis. Settings: Two Australian cancer services. Participants: 18 people with glioma and caregivers. Methods: Semi-structured qualitative telephone interviews were conducted with people with gliomas and caregivers and analysed using reflexive thematic analysis. Results: People 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. Conclusions: Changes 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. Registration: n/a. Tweetable abstract: Identifying cognitive changes in people with glioma is important and challenging. A multidisciplinary approach and inclusion of care coordination and caregivers can help.

Hearing the Voices of Australian Thyroid Cancer Survivors: Qualitative Thematic Analysis of Semistructured Interviews Identifies Unmet Support Needs.

Background: Most thyroid cancer survivors regain their physical health-related quality of life, but psychological and social deficits persist. The nature of these detriments remains poorly understood and they are insufficiently captured by survey data alone. To address this, qualitative data exploring the breadth and depth of thyroid cancer survivors' experiences and priorities for supportive care are required. Methods: Twenty semistructured interviews were undertaken with a purposive, maximum variation sample of thyroid cancer survivors. Interviews were transcribed verbatim and coded independently by two researchers. A hybrid model of inductive and realistic codebook analysis was undertaken with themes developed. Results: Patient experiences centered around three themes: (1) impact of diagnosis and treatment, (2) thyroid cancer does not happen in isolation, and (3) role of clinicians and formalized support structures. The word "cancer" had negative connotations, but for many, the reality of their experience was more positive. Despite feeling "lucky" at the relative low-risk nature of thyroid cancer, many patients reported fatigue, weight gain, and difficulty returning to usual activities; concerns that were largely dismissed or minimized by clinicians. Few were offered any support beyond their treating doctors; where patients attempted to access formalized supportive care, little was available or appropriate. Life stage and concurrent family and social stressors greatly impacted patients' ability to cope with diagnosis and treatment. Addressing thyroid cancer in isolation felt inappropriate without appreciating the broader context of their lives. Interactions with clinicians were largely positive, particularly where information was communicated as a means of empowering patients to participate in shared decision-making and where clinicians "checked in" emotionally with patients. Information about initial treatments was largely adequate but information on longer term effects and follow-up was lacking. Many patients felt that clinicians focused on physical well-being and scan results, missing opportunities to provide psychological support. Conclusions: Thyroid cancer survivors can struggle to navigate their cancer journey, particularly with regard to psychological and social functioning. There is a need to acknowledge these impacts at the time of clinical encounters, as well as develop information resources and support structures that can be individualized to optimize holistic well-being for those in need.

Perceived importance of emotional support provided by health care professionals and social networks: Should we broaden our focus for the delivery of supportive care?

INTRODUCTION: Emotional support provided by health care professionals (HCPs) for people diagnosed with cancer is associated with improved outcomes. Support via social networks may also be important. AIMS: To report among a sample of distressed patients and caregivers, (1) the importance attributed to different sources of emotional support (HCPs and social networks) by distressed cancer patients and caregivers; (2) the proportion who indicate they did not receive sufficient levels of emotional support; and (3) potential associations between respondents' demographic and clinical characteristics and reported lack of emotional support. METHODS: This study utilised cross-sectional data from telephone interviews collected during the usual-care phase of the Structured Triage and Referral by Telephone (START) trial. Participants completed a telephone interview 6 months after their initial call to the Cancer Council Information and Support service and included recall of importance and sufficiency of emotional support. RESULTS: More than two-thirds of patients (n = 234) and caregivers (n = 152) reported that family and friends were very important sources of emotional support. Nurses (69% and 42%) and doctors (68% and 47%) were reported very important, while a lower proportion reported that psychologists and psychiatrists were very important (39%, and 43%). Insufficient levels of support were reported by 36% of participants. Perceptions of insufficient support were significantly associated with distress levels (p < .0001) and not having a partner (p = .0115). CONCLUSION: Social networks, particularly family, are an important source of emotional support. Higher levels of distress, those without partners, and caregivers may require targeted interventions to increase their access to emotional support.

Acceptability and feasibility of cognitive assessments with adults with primary brain cancer and brain metastasis: A systematic review.

Routine cognitive assessment for adults with brain cancers is seldom completed but vital for guiding daily living, maintaining quality of life, or supporting patients and families. This study aims to identify cognitive assessments which are pragmatic and acceptable for use in clinical settings. MEDLINE, EMBASE, PsycINFO, CINAHL, and Cochrane were searched to identify studies published in English between 1990 and 2021. Publications were independently screened by two coders and included if they: (1) were peer-reviewed; (2) reported original data relating to adult primary brain tumor or brain metastases; (3) used objective or subjective assessments; (4) reported assessment acceptability or feasibility. The Psychometric And Pragmatic Evidence Rating Scale was used. Consent, assessment commencement and completion, and study completion were extracted along with author-reported acceptability and feasibility data. PROSPERO Registration: CRD42021234794. Across 27 studies, 21 cognitive assessments had been assessed for feasibility and acceptability; 15 were objective assessments. Acceptability data were limited and heterogeneous, particularly consent (not reported in 23 studies), assessment commencement (not reported in 19 studies), and assessment completion (not reported in 21 studies). Reasons for non-completion could be grouped into patient-factors, assessment-factors, clinician-factors, and system-factors. The three cognitive assessments with the most acceptability and feasibility data reported were the MMSE, MoCA, and NIHTB-CB. Further acceptability and feasibility data are needed including consent, commencement and completion rates. Cost, length, time, and assessor burden are needed for the MMSE, MoCA, and NIHTB-CB, along with potentially new computerized assessments suited for busy clinical settings.

Current patterns of care in low-risk thyroid cancer-A national cross-sectional survey of Australian thyroid clinicians.

INTRODUCTION: De-escalated treatment of hemithyroidectomy without radioactive iodine (RAI) is now accepted for patients with low-risk, well-differentiated thyroid cancer (WDTC). The benefit of long-term follow-up care remains controversial. This study aims to describe parameters associated with less than total thyroidectomy, and discharge from specialist follow-up in patients with low-risk WDTC in Australia. METHODS: An online survey was distributed to Australian members of Endocrine Society of Australia, Australian and New Zealand Endocrine Surgeons, and Australian Society of Otolaryngology, Head and Neck Surgery. Clinicians completed a survey of management and follow-up care preferences for four clinical vignettes (all low-risk WDTC). RESULTS: 119 clinicians (48% endocrinologists, 55% male) answered at least one question. The majority (59%) of respondents recommended less than total thyroidectomy and omission of RAI in patients with WDTC <2 cm. Most (62%) would discharge a patient with micropapillary thyroid cancer within 1 year following total thyroidectomy. In contrast, for WDTC 1-4 cm, >90% of clinicians would continue specialist follow-up for at least 5 years. The majority of clinicians felt that patients experienced disproportionate fear of recurrence and were reassured by follow-up. After multivariable analysis, clinicians who participated in multidisciplinary teams (MDTs) were more likely to choose de-escalated care for both initial treatment (p = .005) and follow-up care (>5 years, p = .05). CONCLUSION: Clinician attitudes captured by this survey reflect recent changes in guidelines towards hemithyroidectomy for low-risk WDTC, particularly amongst MDT attendees. There is a need to further examine the impact of de-escalated care on fear of recurrence and quality of life in thyroid cancer survivors.

Thyroid cancer patient reported outcome measures in clinical practice: analysing acceptability and optimizing recruitment.

BACKGROUND: Patient reported outcomes measures (PROMs) can provide valuable metrics in clinical trials and cancer registries. To ensure relevance, patient participation must be optimized and PROMs be highly acceptable to patients. There are few data reporting methods to maximize recruitment and a lack of consensus regarding appropriate PROMs for thyroid cancer survivors. METHODS: All patients with a new diagnosis of thyroid (excluding micropapillary and anaplastic) cancer within a single Australian health district between January 2020 and December 2021 were invited to complete PROMs electronically, and self-report ease of use and comprehensiveness of each tool. Participants completed Short Form-12 (SF-12), European Organization of Research and Treatment of Cancer (EORTC-QLQ-C30), City of Hope Quality of Life-Thyroid Version (COH-TV) and Thyroid Cancer Quality of Life Survey (ThyCaQoL). Semi-structured qualitative telephone interviews explored patient priorities. An enhanced, multimodal recruitment strategy was instituted after 12 months due to low response rates. RESULTS: Survey completion improved under enhanced recruitment (37/62, 60% versus 19/64, 30%, P = 0.0007) with no differences in demographic or clinical characteristics. Few (4%-7%) respondents rated surveys as difficult to complete. No single PROM comprehensively captured health-related quality of life, with disease-specific tools performing marginally better (54% ThyCaQoL and 52% CoH-TV) compared to generic tools (38% SF-12 and 42% EOROTC-QLQ-C30). Qualitative data suggested that concurrent diagnoses, and survey invitation prior to surgery, made surveys more difficult to complete. CONCLUSION: A comprehensive and representative assessment of PROMs in thyroid cancer survivors requires the use of multiple survey tools and specialized staff to maximize recruitment.

Referral and uptake of services by distressed callers to the Cancer Council Information and Support telephone service.

BACKGROUND: Patient-centered cancer care includes emotional, informational, and practical support that is personalised to the needs of patients and inclusive of family and friends. However, when supportive care referrals are offered in hospital settings, distressed patients and carers do not consistently act on those referrals, which can prolong patient suffering. The degree to which sub-optimal referral uptake also occurs in Australian telephone support services is unknown. AIMS: To report, among a sample of distressed patients and caregivers who called a cancer information and support service: 1) the types of services used; 2) proportion who received and actioned a referral (uptake); 3) associations between referral to a service and callers' characteristics); and, 4) associations between uptake of a referred service and callers' characteristics. METHODS: This study used cross-sectional data collected at 3-month post-baseline from control participants (usual care group) enrolled in the Structured Triage and Referral by Telephone (START) trial. The START trial recruited distressed adult cancer patients and caregivers from the Cancer Council Information and Support Service (CIS). A research assistant conducted a 30-45 min telephone interview with participants, which included recall of referrals provided by CIS staff and reported uptake of referral(s) to the offered service types. RESULTS: Most patients (98%) and caregivers (97%) reported receiving a referral to a service. For patients and caregivers respectively, information materials (71%, 77%), CIS call-back (51%, 43%), practical services (52%, 45%), and group peer support (49%, 51%) were the services most frequently offered. For callers receiving a referral, uptake was highest for information materials (91%) and CIS call-backs (89%) and lowest for specialist psychological services (30%). Significant association was found between older age and reduced uptake of services (p = 0.03). CONCLUSION: The high uptake rate of CIS call-backs suggests it is a potentially more acceptable form of support compared to specialist psychological services. Efforts to reduce the barriers to telephone-based psychological services are required. Specifically, older age peoples' and caregivers' preferences for support and priorities who may benefit from a referral coordinator.

Australian Experiences of Out-of-Pocket Costs and Financial Burden Following a Cancer Diagnosis: A Systematic Review.

(1) Background: This systematic review was conducted to identify cancer patient experiences, and the impact of out-of-pocket costs and financial burden in Australia. (2) Methods: A systematic review, following the Preferring Reporting Items for Systematic Reviews and Meta-Analyses, was conducted. Cumulative Index of Nursing and Allied Health Literature and PubMed were searched. The primary outcome was financial burden among cancer patients and their families in Australia. The secondary outcome was out-of-pocket costs associated with cancer care and treatment within the population sample, and the impact of financial burden. (3) Results: Nineteen studies were included, covering more than 70,000 Australians affected by cancer. Out-of-pocket costs varied by cancer type and ranged from an average of AUD 977 for breast cancer and lymphoedema patients to AUD 11,077 for prostate cancer patients. Younger aged patients (≤65 years), Aboriginal and Torres Strait Islander people, people in rural and/or remote areas, households with low income, those who were unemployed and people with private health insurance were at increased risk of experiencing out-of-pocket costs, financial burden or a combination of both. (4) Conclusions: Australians diagnosed with cancer frequently experience financial burden, and the health and financial consequences are significant. Focusing efforts on the costs of care and options about where to have care within the context of informed decisions about cancer care is necessary.

Facilitating High Quality Cancer Care: A Qualitative Study of Australian Chairpersons' Perspectives on Multidisciplinary Team Meetings.

AIM: Multidisciplinary team meetings (MDMs) are a critical element of quality care for people diagnosed with cancer. The MDM Chairperson plays a significant role in facilitating these meetings, which are often time-poor environments for clinical decision making. This study examines the perceptions of MDM Chairpersons including their role and the factors that determine the quality of a Chair, as well as the Chairperson's perception of the value of personally attending meetings. METHODS: This qualitative study used telephone interviews to explore the experiences of MDM Chairpersons from metropolitan and regional New South Wales, Australia. Using a state-wide register, 43 clinicians who chaired lung, genitourinary, gastrointestinal, and breast cancer meetings were approached to participate. Thematic data analysis was used to develop and organise themes. RESULTS: Themes from the 16 interviews identified the perceived need for an expert and efficient MDM Chairperson with emphasis on personal rather than technical skills. The remaining themes related to the benefits of meetings to ensure quality and consistency of care; improve inter-professional relationships; and provide communication with and reassurance for patients. CONCLUSION: The role of the MDM Chairperson requires expert management and leadership skills to ensure meetings support quality patient-centred care. MDMs are perceived to provide multiple benefits to both clinicians and patients. Efforts to train Chairs and to maximise clinician and patient benefits may be warranted given the costly and time-consuming nature of MDMs.

Psychometric properties of leadership scales for health professionals: a systematic review.

BACKGROUND: The important role of leaders in the translation of health research is acknowledged in the implementation science literature. However, the accurate measurement of leadership traits and behaviours in health professionals has not been directly addressed. This review aimed to identify whether scales which measure leadership traits and behaviours have been found to be reliable and valid for use with health professionals. METHODS: A systematic review was conducted. MEDLINE, EMBASE, PsycINFO, Cochrane, CINAHL, Scopus, ABI/INFORMIT and Business Source Ultimate were searched to identify publications which reported original research testing the reliability, validity or acceptability of a leadership-related scale with health professionals. RESULTS: Of 2814 records, a total of 39 studies met the inclusion criteria, from which 33 scales were identified as having undergone some form of psychometric testing with health professionals. The most commonly used was the Implementation Leadership Scale (n = 5) and the Multifactor Leadership Questionnaire (n = 3). Of the 33 scales, the majority of scales were validated in English speaking countries including the USA (n = 15) and Canada (n = 4), but also with some translations and use in Europe and Asia, predominantly with samples of nurses (n = 27) or allied health professionals (n = 10). Only two validation studies included physicians. Content validity and internal consistency were evident for most scales (n = 30 and 29, respectively). Only 20 of the 33 scales were found to satisfy the acceptable thresholds for good construct validity. Very limited testing occurred in relation to test-re-test reliability, responsiveness, acceptability, cross-cultural revalidation, convergent validity, discriminant validity and criterion validity. CONCLUSIONS: Seven scales may be sufficiently sound to be used with professionals, primarily with nurses. There is an absence of validation of leadership scales with regard to physicians. Given that physicians, along with nurses and allied health professionals have a leadership role in driving the implementation of evidence-based healthcare, this constitutes a clear gap in the psychometric testing of leadership scales for use in healthcare implementation research and practice. TRIAL REGISTRATION: This review follows the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) (see Additional File 1) (PLoS Medicine. 6:e1000097, 2009) and the associated protocol has been registered with the PROSPERO International Prospective Register of Systematic Reviews (Registration Number CRD42019121544 ).