Perceived Barriers Toward Patient-Reported Outcome Implementation in Cancer Care: An International Scoping Survey.

PURPOSE: Implementation of patient-reported outcomes (PROs) collection is an important priority in cancer care. We examined perceived barriers toward implementing PRO collection between centers with and without PRO infrastructure and administrators and nonadministrators. PATIENTS AND METHODS: We performed a multinational survey of oncology practitioners on their perceived barriers to PRO implementations. Multivariable regression models evaluated for differences in perceived barriers to PRO implementation between groups, adjusted for demographic and institutional variables. RESULTS: Among 358 oncology practitioners representing six geographic regions, 31% worked at centers that did not have PRO infrastructure and 26% self-reported as administrators. Administrators were more likely to perceive concerns with liability issues (aOR, 2.00 [95% CI, 1.12 to 3.57]; P = .02) while having nonsignificant trend toward less likely perceiving concerns with disruption of workflow (aOR, 0.58 [95% CI, 0.32 to 1.03]; P = .06) and nonadherence of PRO reporting (aOR, 0.53 [95% CI, 0.26 to 1.08]; P = .08) as barriers. Respondents from centers without PRO infrastructure were more likely to perceive that not having access to a local PRO expert (aOR, 6.59 [95% CI, 3.81 to 11.42]; P < .001), being unsure how to apply PROs in clinical decisions (aOR, 4.20 [95% CI, 2.32 to 7.63]; P < .001), and being unsure about selecting PRO measures (aOR, 3.36 [95% CI, 2.00 to 5.66]; P < .001) as barriers. Heat map analyses identified the largest differences between participants from centers with and without PRO infrastructure in agreed-upon barriers were (1) not having a local PRO expert, (2) being unsure about selecting PRO measures, and (3) not recognizing the role of PROs at the institutional level. CONCLUSION: Perceived barriers toward PRO implementation differ between administrators and nonadministrators and practitioners at centers with and without PRO infrastructure. PRO implementation teams should consider as part of a comprehensive strategy including frontline clinicians and administrators and members with PRO experience within teams.

Culturally safe, appropriate, and high-quality breast cancer screening for transgender people: A scoping review.

Background: There is a recognized need for evidence to inform breast cancer screening guidelines and services for transgender people, who face barriers to accessing appropriate and inclusive health care. Aims: This review summarized evidence for breast cancer risk and screening guidelines in transgender individuals, including the potential impact of gender-affirming hormone therapy (GAHT); factors that may influence screening decision-making and behaviors; and considerations for providing culturally safe, high-quality screening services. Methods: A protocol was developed based on the Joanna Briggs Institute scoping review methodology. Searches were performed in Medline, Emcare, Embase, Scopus, and the Cochrane Library for articles reporting information on the provision of culturally safe, high-quality breast cancer screening services for transgender people. Results: We identified 57 sources for inclusion: 13 cross-sectional studies, 6 case reports, 2 case series, 28 review or opinion articles, 6 systematic reviews, 1 qualitative study, and 1 book chapter. Evidence on rates of breast cancer screening among transgender people and the association between GAHT and breast cancer risk was inconclusive. Factors negatively associated with cancer screening behaviors included socioeconomic barriers, stigma, and lack of health provider awareness of transgender health issues. Breast cancer screening recommendations varied and were generally based on expert opinion due to the lack of clear evidence. Considerations for providing culturally safe care to transgender people were identified and mapped to the areas of workplace policies and procedures, patient information, clinic environment, professional conduct, communication, and knowledge and competency. Discussion: Screening recommendations for transgender individuals are complicated by the lack of robust epidemiological data and clear understanding of the role GAHT may play in breast cancer pathogenesis. Guidelines have been developed based on expert opinion and are subsequently not uniform or evidence based. Further work is required to clarify and consolidate recommendations.

The association of circadian parameters and the clustering of fatigue, depression, and sleep problems in breast cancer survivors: a latent class analysis.

PURPOSE: Circadian rhythms control a wide range of physiological processes and may be associated with fatigue, depression, and sleep problems. We aimed to identify subgroups of breast cancer survivors based on symptoms of fatigue, insomnia, and depression; and assess whether circadian parameters (i.e., chronotype, amplitude, and stability) were associated with these subgroups over time. METHODS: Among breast cancer survivors, usual circadian parameters were assessed at 3-4 months after diagnosis (T0), and symptoms of fatigue, depression, and insomnia were assessed after 2-3 years (T1, N = 265) and 6-8 years (T2, N = 169). We applied latent class analysis to classify survivors in unobserved groups ("classes") based on symptoms at T1. The impact of each of the circadian parameters on class allocation was assessed using multinomial logistic regression analysis, and changes in class allocation from T1 to T2 using latent transition models. RESULTS: We identified 3 latent classes of symptom burden: low (38%), moderate (41%), and high (21%). Survivors with a late chronotype ("evening types") or low circadian amplitude ("languid types") were more likely to have moderate or high symptom burden compared to "morning types" and "vigorous types," respectively. The majority of survivors with moderate (59%) or high (64%) symptom burden at T1 had persistent symptom burden at T2. IMPLICATIONS FOR CANCER SURVIVORS: A late chronotype and lower circadian amplitude after breast cancer diagnosis were associated with greater symptoms of fatigue, depression, and insomnia at follow-up. These circadian parameters may potentially be novel targets in interventions aimed at alleviating symptom burden among breast cancer survivors.

Exercise counselling and referral in cancer care: an international scoping survey of health care practitioners' knowledge, practices, barriers, and facilitators.

PURPOSE: Evidence supports the role of prescribed exercise for cancer survivors, yet few are advised to exercise by a healthcare practitioner (HCP). We sought to investigate the gap between HCPs' knowledge and practice from an international perspective. METHODS: An online questionnaire was administered to HCPs working in cancer care between February 2020 and February 2021. The questionnaire assessed knowledge, beliefs, and practices regarding exercise counselling and referral of cancer survivors to exercise programs. RESULTS: The questionnaire was completed by 375 participants classified as medical practitioners (42%), nurses (28%), exercise specialists (14%), and non-exercise allied health practitioners (16%). Between 35 and 50% of participants self-reported poor knowledge of when, how, and which cancer survivors to refer to exercise programs or professionals, and how to counsel based on exercise guidelines. Commonly reported barriers to exercise counselling were safety concerns, time constraints, cancer survivors being told to rest by friends and family, and not knowing how to screen people for suitability to exercise (40-48%). Multivariable logistic regression models including age, gender, practitioner group, leisure-time physical activity, and recall of guidelines found significant effects for providing specific exercise advice (χ2(7) = 117.31, p < .001), discussing the role of exercise in symptom management (χ2(7) = 65.13, p < .001) and cancer outcomes (χ2(7) = 58.69, p < .001), and referring cancer survivors to an exercise program or specialist (χ2(7) = 72.76, p < .001). CONCLUSION: Additional education and practical support are needed to equip HCPs to provide cancer survivors with exercise guidelines, resources, and referrals to exercise specialists.

Patients' experiences and perspectives of patient-reported outcome measures in clinical care: A systematic review and qualitative meta-synthesis.

BACKGROUND: Patient-reported outcome measures (PROMs) or patient-reported outcomes (PROs) are used by clinicians in everyday clinical practice to assess patients' perceptions of their own health and the healthcare they receive. By providing insight into how illness and interventions impact on patients' lives, they can help to bridge the gap between clinicians' expectations and what matters most to the patient. Given increasing focus on patient-centred care, the objective of this meta-synthesis was to summarise the qualitative evidence regarding patients' perspectives and experiences of the use of PROMs in clinical care. METHODS: A systematic search of the following databases was undertaken in August 2020: Medline, EMBASE, EMCARE, PsychINFO, Scopus and the Cochrane Library. This review was conducted and reported in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. Methodological quality of the included studies was assessed using the Critical Appraisal Skills Programme checklist for qualitative research (CASP). A meta-ethnographic approach was used for data extraction and meta-synthesis of findings (PROSPERO registration: CRD42020202506). RESULTS: Fourteen studies from a range of countries with differing qualitative research methodologies were identified. Three themes were identified, namely 'patient preferences regarding PROMs', 'patient perceived benefits' and 'barriers to patient engagement with PROMs'. The perspectives of patients suggested they preferred PROMs that were simple and relevant to their conditions and found benefits in the way they facilitated self-reflection and effective communication with their clinicians. Patients, however, questioned the relevance of some individual questions and purpose. CONCLUSION: PROMs can be a useful tool in the clinical setting by enabling individualisation and patient centred care. This meta-synthesis provides insights into what patients find beneficial as well as barriers to their engagement, highlighting the importance of educating patients about PROMs.

Exploring the association between oral tactile sensitivity measures and phenotypic markers of oral responsiveness.

This study investigated the individual variability in oral tactile sensitivity considering touch, by means of Von Frey Hair monofilaments (VFH) and spatial resolution, using the grating orientation test (GOT). The relationships of the two measures with 6-n-propylthiouracil (PROP) responsiveness and fungiform papillae density and size were investigated. One hundred and forty-four subjects (48.6% women, aged 18-30) participated in the study. VFH and GOT thresholds were assessed by three-down/one-up staircase method. Responsiveness to 3.2 mM PROP was assessed on the general Labeled Magnitude Scale. Fungiform papillae density (FPD) and size were determined from automated counting. VFH thresholds appeared unsuitable to reveal individual variation in responsiveness to point-pressure on the tongue. The frequency of GOT thresholds approximated a normal distribution and covered the whole range of variation, thus indicating an ability to measure individual variation in oral tactile sensitivity. No significant linear correlations were found between any of the oral tactile sensitivity measures and PROP responsiveness, FPD total and size class. VFH and GOT thresholds were not significantly associated. Agglomerative hierarchical clustering was used to classify participants for their PROP responsiveness, total FPD and GOT threshold. Three clusters were identified, C1 (n = 67), Cl2 (n = 42), and Cl3 (n = 35), differing for PROP responsiveness and FPD only. Results encourage future studies to explore association between GOT and both perception and preference for different food texture. Furthermore, deeper investigation of individual variability in sensitivity to different types of oral tactile stimuli would be helpful to capture differences in tactile sensitivity among the most sensitive individuals.

Challenges and opportunities for using population health data to investigate cancer survivors' quality of life in Australia.

There is a recognised need for reported national data that inform health policy, health professions, and consumers about the wellbeing of Australians with cancer and other chronic conditions. International initiatives have demonstrated the viability and benefits of utilising population-based cancer registries to monitor the prevalence and trajectory of health-related quality of life (HRQOL) outcomes among people with cancer. Establishing a similar level of monitoring in Australia would require timely access to health data collected by publicly funded, population-based cancer registries, and the capacity to link this information across jurisdictions. Combining information from different sources via data linkage is an efficient and cost-effective way to maximise how data are used to inform population health and policy development. However, linking health datasets has historically been highly restricted, resource-intensive, and costly in Australia due to complex and outdated legislative requirements, duplicative approval processes, and differing policy frameworks in each state and territory. This has resulted in significant research waste due to underutilisation of existing data, duplication of research efforts and resources, and data not being translated into decision-making. Recognising these challenges, from 2015 to 2017 the Productivity Commission investigated options for improving data availability and use in Australia, considering factors such as privacy, security, and intellectual property. The inquiry report recommended significant reforms for Australian legislation, including the creation of a data sharing and release structure to improve access to data for research and policy development purposes. This paper discusses (1) opportunities in HRQOL research enabled by data linkage, (2) barriers to data access and use in Australia and the implications for waste in HRQOL research, and (3) proposed legislative reforms for improving data availability and use in Australia.

The use of patient-reported outcomes in routine cancer care: preliminary insights from a multinational scoping survey of oncology practitioners.

BACKGROUND: There exists scant evidence on the optimal approaches to integrating patient-reported outcomes (PROs) in clinical practice. This study gathered oncology practitioners' experiences with implementing PROs in cancer care. METHODS: Between December 2019 and June 2020, we surveyed practitioners who reported spending > 5% of their time providing clinical care to cancer patients. Respondents completed an online survey describing their experiences with and barriers to using PROs in clinical settings. RESULTS: In total, 362 practitioners (physicians 38.7%, nurses 46.7%, allied health professionals 14.6%) completed the survey, representing 41 countries (Asia-Pacific 42.5%, North America 30.1%, Europe 24.0%, others 3.3%). One quarter (25.4%) identified themselves as "high frequency users" who conducted PRO assessments on > 80% of their patients. Practitioners commonly used PROs to facilitate communication (60.2%) and monitor treatment responses (52.6%). The most commonly reported implementation barriers were a lack of technological support (70.4%) and absence of a robust workflow to integrate PROs in clinical care (61.5%). Compared to practitioners from high-income countries, more practitioners in low-middle income countries reported not having access to a local PRO expert (P < .0001) and difficulty in identifying the appropriate PRO domains (P = .006). Compared with nurses and allied health professionals, physicians were more likely to perceive disruptions in clinical care during PRO collection (P = .001) as an implementation barrier. CONCLUSIONS: Only a quarter of the surveyed practitioners reported capturing PROs in routine clinical practice. The implementation barriers to PRO use varied across respondents in different professions and levels of socioeconomic resources. Our findings can be applied to guide planning and implementation of PRO collection in cancer care.

Culturally safe, high-quality breast cancer screening for transgender people: A scoping review protocol.

AIM: To develop evidence-based recommendations for provision of culturally safe, high-quality services for breast cancer screening for transgender people. DESIGN: The scoping review will follow the JBI methodological guidance for scoping reviews. METHODS: A search using MEDLINE (PubMed), Embase (Ovid), Scopus, the Cochrane Library, including the Cochrane Methodology Register, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews and the World Health Organization, Australia Government Department of Health and Google Scholar will be undertaken. The review will include people of any age and ethnicity defined in the source of evidence as transgender. The review will include individuals who have used gender-affirming interventions or not and sources of evidence that report information relevant to the provision of culturally safe, high-quality breast cancer screening services for transgender people. English language sources of evidence published from database inception with information from any country will be eligible for inclusion. Sources will be screened for inclusion by three independent reviewers. Results will be extracted using a purpose-built tool and presented in relation to the review questions and objective in the final report using tables, figures and corresponding narrative. Project funding was approved by the Australian Government Department of Health in June 2020. DISCUSSION: There are a range of factors that impact on the equity of health access and outcomes for people who are not cisgender. Transgender people are at risk of breast cancer but there is relatively little evidence about how their risks may or may not differ substantially from cis-gendered individuals and little guidance for health providers to ensure inclusive, culturally safe, high-quality breast cancer screening services for both transgender males, transgender females and gender diverse people who may not identify as male or as female. IMPACT: It is important to provide culturally safe, high-quality services for breast cancer screening for transgender people.

Assessing the sensory and physicochemical impact of reverse osmosis membrane technology to dealcoholize two different beer styles.

A pilot scale dealcoholisation unit fitted with reverse osmosis (RO) membranes was used to directly compare two beer matrices (stout, lager, ~ 5% ABV) and their dealcoholized counterparts (~0.5% ABV), for physicochemical properties (volatiles, pH, ABV, polyphenols, bitterness) and sensory profiles using a trained descriptive panel (n = 12). The efficiency and consistency of RO membranes were evaluated by replicate dealcoholisation trials (n = 3) for each beer. Statistical analysis revealed significant reductions (p < 0.05) in key volatile compounds with linear structures (ethyl octanoate, octan-1-ol) compared to those with increased levels of branching (3-methylbutyl acetate, 2-methylpropan-1-ol). Significant reductions (p < 0.0001) in 'fruity/estery', 'alcoholic/solvent', 'malty', 'sweetness' and 'body' sensory attributes were also discovered. Finally, longer processing times for the stout across replicate trials suggested membrane clogging, whilst differences in volatile reduction suggested membrane fouling. This novel research proposes compound structure, rather than compound size, impacts RO membrane permeability and resulting sensory quality.

Understanding the sensory and physicochemical differences between commercially produced non-alcoholic lagers, and their influence on consumer liking.

This study aimed to investigate the sensory and physicochemical differences of a range of commercial non-alcoholic lagers, as well as their influence on overall liking. Using physicochemical analysis and modified quantitative descriptive analysis (QDA) with a trained panel (n = 10) eighteen commercial non-alcoholic lagers, made using different production methods, were assessed. A subset (eleven), representing the sensory space were also assessed for hedonic liking using consumers (n = 104). Overall, it showed a clear variety of non-alcoholic lagers were selected, with different clusters of samples found with identifiable characteristics. Production methods were explored as a possible explanation for the differences in characteristics, however these did not fully explain the clusters and therefore other factors, such as pre or post processing methods are discussed. In terms of overall liking, five clusters of consumers were discovered with different patterns of liking, confirming that a wide range of non-alcoholic lagers are needed to satisfy all consumers.

A pilot study of population-based, patient-reported outcome collection in cancer survivors.

AIM: To determine feasibility and acceptability of completing PROs questionnaires at completion and 1 year after curative cancer treatment. METHODS: Patients assessed in a nurse-led end of treatment survivorship clinic, at a tertiary referral centre, recruited between October 2015 and July 2016 were mailed a survey at baseline and at 12-month follow-up. The survey included validated PRO questionnaires. A target response rate for feasibility, defined as the proportion of the eligible population approached that completed the survey, was set at 70%. Qualitative feedback regarding the survey was collected from participants. RESULTS: Of the 47 eligible patients approached, 34 (72.4%) agreed to participate with 29 (61.9%) completing the survey at baseline, and 21 (44.7%) at follow-up. Respondents lost to follow-up at 12 months had clinically meaningful lower scores on all QLQ-C30 functioning scales and 8 out of 9 symptom scales/items. Qualitative feedback from survey respondents indicated the content was relevant and acceptable. Participants expressed willingness to complete a similar survey approximately once per year and a higher preference for completing the survey in hard copy compared with online. CONCLUSIONS: Cancer survivors are willing to provide information on a range of PROs, but those with higher needs were the ones less likely to complete surveys. There is scope to improve the response rate and representativeness of the patient cohort captured. Future research should identify strategies to optimise recruitment when collecting PROs data from cancer survivors.

A core set of patient-reported outcomes for population-based cancer survivorship research: a consensus study.

PURPOSE: Core outcome sets aim to improve the consistency and quality of research by providing agreed-upon recommendations regarding what outcomes should be measured as a minimum for a population and setting. This study aimed to identify a core set of patient-reported outcomes (PROs) representing the most important issues impacting on cancer survivors' long-term health, functioning, and quality of life, to inform population-based research on cancer survivorship. METHODS: In phase I, a list of 46 outcomes was generated through focus groups (n = 5) with cancer survivors (n = 40) and a review of instruments for assessing quality of life in cancer survivorship. In phase II, 69 national experts in cancer survivorship practice, research, policy, and lived experience participated in a two-round Delphi survey to refine and prioritise the listed outcomes into a core outcome set. A consensus meeting was held with a sub-sample of participants to discuss and finalise the included outcomes. RESULTS: Twelve outcome domains were agreed upon for inclusion in the core outcome set: depression, anxiety, pain, fatigue, cognitive problems, fear of cancer recurrence or progression, functioning in everyday activities and roles, financial toxicity, coping with cancer, overall bother from side effects, overall quality of life, and overall health status. CONCLUSIONS: We established a core set of PROs to standardise assessment of cancer survivorship concerns at a population level. IMPLICATIONS FOR CANCER SURVIVORS: Adoption of the core outcome set will ensure that survivorship outcomes considered important by cancer survivors are assessed as a minimum in future studies. Furthermore, its routine use will optimise the comparability, quality, and usefulness of the data cancer survivors provide in population-based research.

Understanding the lost functionality of ethanol in non-alcoholic beer using sensory evaluation, aroma release and molecular hydrodynamics.

Consumer sensory evaluation, aroma release analysis and biophysical protein analysis were used to investigate the effect of ethanol on the release and perception of flavour in beer (lager and stout) at different ethanol levels (0 and 5% ABV). Consumer study results showed no significant differences in orthonasal perception, yet retronasal results showed that 0% lager was perceived as maltier with reduced fruitiness, sweetness, fullness/body and alcohol warming sensation (p < 0.05). Whilst ethanol alone decreases the aroma release regardless of LogP, the presence of α-amylase selectively reduces the headspace concentration of hydrophobic compounds. It was found that ethanol has a subtle inhibitory effect on the binding of hydrophobic compounds to α-amylase, thereby increasing their headspace concentration in the 5% ABV as compared to the 0% beers. This synergistic ethanol * saliva effect is attributed to the changes in the conformation of α-amylase due to ethanol-induced denaturation. It is hypothesised that the partially unfolded protein structures have a lower number of hydrophobic pockets, leading to a lower capacity to entrap hydrophobic aroma compounds. This supports the hypothesis that ethanol * saliva interactions directly impact the sensory and flavour properties of beer, which would provide a basis for further investigations in reformulation of 0% ABV drinks.

Core outcome sets in cancer and their approaches to identifying and selecting patient-reported outcome measures: a systematic review.

OBJECTIVES: Issues arising from a lack of outcome standardisation in health research may be addressed by the use of core outcome sets (COS), which represent agreed-upon recommendations regarding what outcomes should be measured as a minimum in studies of a health condition. This review investigated the scope, outcomes, and development methods of consensus-based COS for cancer, and their approaches and criteria for selecting instruments to assess core patient-reported outcomes (PROs). METHODS: Studies that used a consensus-driven approach to develop a COS containing PROs, for use in research with cancer populations, were sought via MEDLINE, CINAHL, Embase, Cochrane Library, and grey literature. RESULTS: Seventeen studies met the inclusion criteria. Most COS (82%) were specific to a cancer type (prostate, esophageal, head and neck, pancreatic, breast, ovarian, lung, or colorectal) and not specific to an intervention or treatment (76%). Conducting a systematic review was the most common approach to identifying outcomes (88%) and administering a Delphi survey was the most common approach to prioritising outcomes (71%). The included COS contained 90 PROs, of which the most common were physical function, sexual (dys) function, pain, fatigue, and emotional function. Most studies (59%) did not address how to assess the core PROs included in a set, while 7 studies (41%) recommended specific instruments. Their approaches to instrument appraisal and selection varied. CONCLUSION: Efforts to standardise outcome assessment via the development of COS may be undermined by a lack of recommendations on how to measure core PROs. To optimise COS usefulness and adoption, valid and reliable instruments for the assessment of core PROs should be recommended with the aid of resources designed to facilitate this process.

Development of a Core Set of Patient-Reported Outcomes for Population-Based Cancer Survivorship Research: Protocol for an Australian Consensus Study.

BACKGROUND: Core outcome sets seek to improve the consistency and quality of research by providing agreed-upon recommendations regarding what outcomes should be measured as a minimum for a population and setting. The problems arising from a lack of outcome standardization in population-based cancer survivorship research indicate the need for agreement on a core set of patient-reported outcomes (PROs) to enhance data quality, consistency, and comparability. OBJECTIVE: This study aims to identify a core set of PROs, representing the most important issues impacting on cancer survivors' long-term health, functioning and quality of life, to inform population-based research on cancer survivorship. METHODS: In Phase I, a list of all potentially important outcomes will be generated through focus group discussions with cancer survivors and a review of measures for assessing quality of life in cancer survivorship. The consolidated list will be advanced to Phase II, where a stakeholder consensus process will be conducted with national experts in cancer survivorship to refine and prioritize the outcomes into a core outcome set. The process will consist of a two-round Delphi survey and a consensus meeting. Cancer survivors, oncology health care professionals, and potential end users of the core outcome set with expertise in cancer survivorship research or policy will be invited to participate. In Phase III, recommended measures for assessment of the core outcome set will be selected with advice from experts on the assessment, analysis, and interpretation of PROs. RESULTS: As of April 2019, data collection for Phase I is complete and data analysis is underway. These data will inform the list of outcomes to be advanced into Phase II. Recruitment for Phase II will commence in June 2019, and it is anticipated that it will take 6 months to complete the three-step consensus process and identify a provisional core outcome set. The study results are expected to be published in early 2020. CONCLUSIONS: Expert consensus-driven recommendations on outcome measurement will facilitate the inclusion of survivorship outcomes considered important by cancer survivors and health professionals in future research. Adoption of the core outcome set will enable comparison and synthesis of evidence across studies and enhance the quality of PRO data collected in cancer survivorship research, particularly when applied to address macro-level questions. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/14544.

Correction to: Cancer survivors who fully participate in the PROFILES registry have better health-related quality of life than those who drop out.

The original version of the article contains a mistake in figure 2 labeling.

Cancer survivors who fully participate in the PROFILES registry have better health-related quality of life than those who drop out.

PURPOSE: Attrition and subsequent missing data pose a challenge in longitudinal research in oncology. This study examined factors associated with attrition in the PROFILES registry, and its impact on observed health-related quality of life (HRQOL) estimates. METHODS: Sociodemographic, clinical, and HRQOL data were collected annually from a cohort of 2625 colorectal cancer survivors between 2010 and 2015. Participant characteristics according to time of dropout were compared using analysis of variance and chi-square tests. Predictors of attrition were examined in logistic regression analysis. Multilevel linear mixed models were constructed to investigate associations between attrition and HRQOL over time. RESULTS: Participants who dropped out were more likely to be female (OR = 1.23, CI = 1.02-1.47), older (OR = 1.20, CI = 1.09-1.33), less educated (OR = 1.64, CI = 1.30-2.11), and to have depressive symptoms (OR = 1.84, CI = 1.39-2.44) than full responders, and less likely to have high socioeconomic status (OR = 0.74, CI = 0.61-0.94). Participants who dropped out earlier reported significantly worse HRQOL, functioning, and psychosocial symptoms, which declined at a steeper rate over time, than full responders. CONCLUSIONS: Cancer survivors' HRQOL may be overestimated in longitudinal research due to attrition of the most unwell participants. IMPLICATIONS FOR CANCER SURVIVORS: Cancer survivors with the poorest health are at risk of dropping out of PROFILES and possibly withdrawing from other activities. Optimizing participation in PROFILES-a potential mechanism for providing information and access to support-is an avenue for keeping this group engaged.

An evaluation of social work services in a cancer accommodation facility for rural South Australians.

PURPOSE: The purpose of this investigation was to evaluate the social work service at an accommodation facility for people receiving cancer treatment away from home with a focus on distress, impact of support, and type of assistance received from the social work service. METHOD: Guests who stayed at the Cancer Council Lodge during June 2015 were mailed a questionnaire collecting information about level of distress upon arrival and departure, impact of support in several areas, and what the service assisted them with specifically. RESULTS: The sample comprised 149 guests. Social work contact (n = 19) was associated with greater reduction in distress between arrival and departure compared with no contact (n = 56). Contact with a social worker was associated with greater odds of agreeing or strongly agreeing that guests felt supported in 6 out of 10 areas assessed. These areas were managing the challenges related to cancer, approaching support services, asking questions of healthcare teams, accessing support services, coping with strong emotions, and understanding reactions of family and friends. The most common types of support received were emotional and informational support. CONCLUSIONS: This study describes some of benefits of providing social work services to people receiving cancer treatment away from home and has implications for provision of social work service resources in similar settings. Further research could investigate the impact of this service in similar settings using randomised controlled trials to better account for potential biases. Research in this area has potential to inform program development and policy.

Challenges to uptake of cancer education resources by rural Aboriginal Health Workers: the Cancer Healing Messages flipchart experience.

INTRODUCTION: The Australian Aboriginal and Torres Strait Islander (Aboriginal) population has a higher age-standardised cancer mortality rate and a significantly lower 5-year survival rate for all cancers than the non-Aboriginal population. Aboriginal people from regional and remote South Australia and the Northern Territory, are often required to travel to Adelaide to access specialist cancer care services. The burden and expenses associated with transport and accommodation and cultural and linguistic factors have been identified as barriers to accessing medical treatment and health services. In collaboration with community and stakeholders, Cancer Council South Australia led the development of the Cancer Healing Messages flipchart and patient flyer to assist health professionals in explaining cancer and the cancer journey to Aboriginal cancer patients and their families. This study examined the usage, acceptability and perceived usefulness of the resources, barriers to uptake, and strategies to improve their utilisation and sustainability. METHODS: An evaluation survey was conducted among Aboriginal Health Workers (AHWs) and other health professionals working with Aboriginal clients in South Australia (n=18). Participants indicated whether they agreed that the resources are valuable, culturally appropriate, helpful for explaining aspects of cancer to Aboriginal cancer patients, and useful with regard patient outcomes, how frequently they used or would use the resources for information, and how they use the flipchart in practice. Participants were also asked to report any usage barriers. RESULTS: The resources were considered useful, valuable and culturally appropriate by almost all participants; however, there was a discrepancy between intentions to use the resources and actual uptake, which was low. The most commonly reported barriers related to appropriateness for certain patients and lack of availability of resources in some contexts. CONCLUSION: The Cancer Healing Messages flipchart and patient flyer are perceived as appropriate, valuable, and useful tools for AHWs. A long-term strategy and clear implementation plan involving education, training and promotion of the materials, is required to achieve broad reach and sustainable utilisation of the Cancer Healing Messages flipchart and patient flyer.