How social media can help to understand treatment experiences of survivors of rare cancers: Findings from the Granulosa Cell Tumor Survivor Sisters Facebook group member survey.

BACKGROUND: Engaging with online social media consumer groups for rare cancers may help to develop collaborations between consumers and researchers. This study, a collaboration with the Granulosa Cell Tumor-Survivor Sisters (GCT-SS) Facebook group, explores the results of their survey of member's treatment and follow-up experiences. METHODS: Members of the closed multinational GCT-SS Facebook group completed a 43-item survey covering symptoms, diagnosis, treatment, recurrence, follow-up, and possible risk factors for GCT. Group members could have adult (aGCT) or juvenile (jGCT) disease. Data was collected via an online survey between 2014 and 2019. RESULTS: A total of 743 members (average 4.4 years [SD = 5.9] post-diagnosis) participated including 52 with jGCT. A total of 67% had stage I disease and 8% had stage III-IV at diagnosis, although 30% of aGCT and 25% of jGCT reported recurrent disease at survey completion. A total of 48% of aGCT had laparoscopic surgery, tumor encapsulation was reported by 49%, and tumor bagging reported by 29% overall (37% laparoscopic; 8% open). Recurrence rates were higher when the tumor was cut or ruptured (ruptured: p < .001; cut: p = .01). A total of 19% of aGCT had chemotherapy with this most common for stage II-III disease. Bleomycin, etoposide, and cisplatin protocols became less common over time (diagnosed before 2015: 47% vs. diagnosed post-2015: 21%). CONCLUSIONS: This is one of the largest surveys of GCT treatment. Members of the GCT-SS group report treatment patterns generally in line with those found from clinical audits. Using naturally forming consumer groups may assist with developing the evidence base for care and supporting those living with GCT ovarian cancer. PLAIN LANGUAGE SUMMARY: This study is a collaboration between members of Granulosa Cell Tumor-Survivor Sisters (GCT-SS) Facebook group and researchers to assess members' experiences of treatment and follow-up. A total of 743 members (52 with juvenile GCT) completed an online survey. A total of 67% had stage I disease at diagnosis. Treatment patterns were generally in line with those found from clinical audits: 95% had surgery and 19% of those with adult GCT had chemotherapy. A total of 30% reported recurrent disease, with recurrence occurring within 5 years of diagnosis for 33%. Using naturally forming consumer groups may assist with developing the evidence base for care and supporting those living with GCT ovarian cancer.

Uncovering the advertising and promotional strategies of tobacco companies in Cambodia: recall of below-the-line marketing among young male smokers.

INTRODUCTION: Tobacco companies have used below-the-line marketing in novel ways to promote their brands to youth in low/middle-income countries in Southeast Asia. This study explores how young male smokers in Cambodia experience below-the-line marketing strategies. METHODS: Convenience sampling was used to recruit 147 young male smokers (18-24 years) in Cambodia in early 2020. Local research assistants conducted mixed-methods interviews with participants in Khmer or English. Participants recalled exposure to below-the-line marketing strategies and provided in-depth descriptions about their experiences with individual sales promotions. Quantitative data were analysed using descriptive statistics and qualitative data were analysed using thematic analysis. RESULTS: 54% of participants recalled exposure to at least one below-the-line marketing strategy, including point-of-sale promotions (32.7%), individual sales promotions (27.9%) and online advertising (14.3%). Participants described individual sales promotions in public settings, and recalled that promoters were mostly female, attractive and targeted young males. Tactics used to encourage young people to accept promotional offers included free cigarettes and sample packets, swapping current cigarettes for new brands and collecting consumer details after interviewing. The brands and product features of cigarettes being promoted were readily described by participants. CONCLUSION: This study provides evidence that illegal below-the-line marketing is still occurring in Cambodia, and increased monitoring and enforcement of advertising restrictions is needed.

Disparities in quality of life, social distress and employment outcomes in Australian cancer survivors.

PURPOSE: To examine how socio-demographic, comorbidities and information needs influence quality of life (QoL) outcomes of survivors of breast, colorectal, or prostate cancer, non-Hodgkin lymphoma or melanoma. METHODS: Cross-sectional postal survey with eligible participants identified through a population-based cancer registry. QoL outcomes were assessed by EQ-5D-5L, social difficulties index (SDI) and, for those employed at diagnosis, current employment. Regression analyses explored associations between outcome variables and cancer type, age, time since diagnosis, residential location, socio-economic disadvantage, comorbidities and unmet information needs. Mediation analyses examined whether comorbidities and information needs explained relationships between outcome variables and socio-economic disadvantage. RESULTS: 2115 survivors participated. Mean EQ-5D-5L scores (mean = 0.84) were similar to population averages and SDI scores were low for the entire sample (mean = 3.80). In multivariate analyses, being aged over 80, greater socio-economic disadvantage, comorbidities and unmet information needs decreased EQ-5D-5L scores. Higher SDI scores were associated with socio-economic disadvantage, comorbidities and unmet information needs. Not being employed was associated with being aged over 50, more comorbidities and socio-economic disadvantage. Comorbidities but not information needs partially mediated the impact of socio-economic disadvantage on EQ-5D-5L and SDI accounting for 17% and 14% of the total effect of socio-economic disadvantage respectively. Neither comorbidities nor information needs mediated the association between socio-economic disadvantage and employment outcomes. CONCLUSIONS: To improve quality of life, survivorship care should be better tailored to address the needs of individuals given their overall health and impact of comorbidities, their age and type of cancer and not simply time since diagnosis.

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

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

A Simple Clinical Tool for Stratifying Risk of Clinically Significant CKD after Nephrectomy: Development and Multinational Validation.

BACKGROUND: Clinically significant CKD following surgery for kidney cancer is associated with increased morbidity and mortality, but identifying patients at increased CKD risk remains difficult. Simple methods to stratify risk of clinically significant CKD after nephrectomy are needed. METHODS: To develop a tool for stratifying patients' risk of CKD arising after surgery for kidney cancer, we tested models in a population-based cohort of 699 patients with kidney cancer in Queensland, Australia (2012-2013). We validated these models in a population-based cohort of 423 patients from Victoria, Australia, and in patient cohorts from single centers in Queensland, Scotland, and England. Eligible patients had two functioning kidneys and a preoperative eGFR ≥60 ml/min per 1.73 m2. The main outcome was incident eGFR <45 ml/min per 1.73 m2 at 12 months postnephrectomy. We used prespecified predictors-age ≥65 years old, diabetes mellitus, preoperative eGFR, and nephrectomy type (partial/radical)-to fit logistic regression models and grouped patients according to degree of risk of clinically significant CKD (negligible, low, moderate, or high risk). RESULTS: Absolute risks of stage 3b or higher CKD were <2%, 3% to 14%, 21% to 26%, and 46% to 69% across the four strata of negligible, low, moderate, and high risk, respectively. The negative predictive value of the negligible risk category was 98.9% for clinically significant CKD. The c statistic for this score ranged from 0.84 to 0.88 across derivation and validation cohorts. CONCLUSIONS: Our simple scoring system can reproducibly stratify postnephrectomy CKD risk on the basis of readily available parameters. This clinical tool's quantitative assessment of CKD risk may be weighed against other considerations when planning management of kidney tumors and help inform shared decision making between clinicians and patients.

Social connectedness and mortality after prostate cancer diagnosis: A prospective cohort study.

Men with prostate cancer experience side effects for which a supportive social environment may be beneficial. We examined the association between four measures of social connectedness and mortality after a prostate cancer diagnosis. Male participants in the Melbourne Collaborative Cohort Study in 1990-1994, who developed incident prostate cancer and attended follow-up in 2003-2007, were eligible for the study. Information on social connectedness, collected at follow-up, included (i) living arrangement; (ii) frequency of visits to friends/relatives and (iii) from friends/relatives; (iv) weekly hours of social activities. A total of 1,421 prostate cancer cases was observed (338 all-cause deaths, 113 from prostate cancer), including 867 after follow-up (150 all-cause deaths, 55 from prostate cancer) and 554 before follow-up (188 all-cause deaths, 58 from prostate cancer). Cox models stratified by tumour Gleason score and stage, and sequentially adjusted for socioeconomic, health- and lifestyle-related confounders, were used to calculate hazard ratios (HR) and 95% confidence intervals (95% CI) for the association between social connectedness and all-cause mortality after prostate cancer. Men who reported living alone before diagnosis had higher overall mortality (HR = 1.6, 95% CI: 1.0-2.5), after adjustment for socioeconomic, health and lifestyle confounders. Lower mortality was observed for men with more social activities (p-trend = 0.07), but not in comprehensively adjusted models. Consistent with these findings, men living alone after prostate cancer diagnosis had higher mortality (HR = 1.3, 95% CI: 0.9-1.9). Lower mortality was observed with increasing socializing hours in the age-adjusted model (p-trend = 0.06) but not after more comprehensive adjustment. Our findings suggest that living with someone, but not other aspects of social connectedness, may be associated with decreased mortality for men with prostate cancer.

The impact of cancer type, treatment, and distress on health-related quality of life: cross-sectional findings from a study of Australian cancer patients.

PURPOSE: This study examined the mediating effects of cancer type, treatment, and distress on health-related quality of life (HRQoL) for early diagnosis cancer patients. Results were interpreted with respect to established thresholds for clinical meaningfulness. METHODS: A cross-sectional design was used. Patients completed surveys collecting demographics, cancer type, treatment, comorbid conditions, distress (HADS), and HRQoL (FACT-G). Hierarchical multivariate regressions examined associations between cancer type, treatment, and distress on HRQoL. Established minimum differences were used to identify clinically meaningful changes in HRQoL. RESULTS: Of the 1183 patients surveyed, 21% were classified as having elevated anxiety and 13% had elevated depression. Our sample reported significantly lower physical and emotional well-being compared to population norms. Patients with prostate, melanoma, gynaecological, and urological cancers had higher HRQoL scores than those with colorectal cancer. However, when effects for treatment type and distress were considered, differences between cancer types became non-significant. Anxiety and depression were associated with lower HRQoL scores as was chemotherapy. Only depression, anxiety, and chemotherapy were associated with clinically meaningful decreases in HRQoL scores. CONCLUSIONS: While statistically significant differences in HRQoL were found between different cancer types, only chemotherapy, anxiety, and depression produced clinically meaningful poorer HRQoL scores. In practice, clinically meaningful differences could promote a shift in resources toward interventions where a positive effect on patient well-being is appreciated by both the patient and health professional.

Long-term impact of plain packaging of cigarettes with larger graphic health warnings: findings from cross-sectional surveys of Australian adolescents between 2011 and 2017.

OBJECTIVE: To assess the long-term impact of plain packaging (PP) of cigarettes with larger graphic health warnings (HW) introduced in December 2012 on adolescents' relevant tobacco-related perceptions. METHODS: Cross-sectional school-based surveys of 12 to 17 year olds in 2011 (n=4413), 2013 (n=4423), 2014 (n=4576) and 2017 (n=4266). Students rated the character of four popular cigarette brands, indicated their agreement regarding brand differences in smoking ease, quitting, addictiveness, harmfulness and pack attractiveness and positive/negative perceptions of pack image. The frequency of students reading, attending to, thinking and talking about HW was assessed. Responses of students seeing cigarette packs in the previous 6 months (2011: 63%; 2013: 67%, 2014: 56%, 2017: 56%) were examined. RESULTS: Smoking prevalence declined from 2011 to 2017. Among students who had recently seen packs, cigarette packs were rated less positively and more negatively in 2017 than in 2011 (p<0.001) with ratings similar between 2013 and 2017. Positive character ratings for each brand reduced between 2011 and 2013 (ps<0.05) with further reductions between 2013 and 2017 (ps<0.05). Fewer students agreed, and more were uncertain, that brands differed in their smoking ease, addictiveness, harmfulness and pack attractiveness in 2017 than 2011. The frequency of students reading, attending, talking or thinking about HW did not change between 2011 and 2017. CONCLUSIONS: PP's initial impact in reducing adolescent's positive perceptions of cigarette packs and brand differences continued in the following years with tobacco packaging less appealing to young people in 2017 than 2011 and students more uncertain about brand differences.

Age at diagnosis and the surgical management of small renal carcinomas: findings from a cross-sectional population-based study.

OBJECTIVES: To describe the use of partial nephrectomy (PN) for patients with stage T1a renal cell carcinoma (RCC) by age group (<65 and ≥65 years) in two Australian states. MATERIALS AND METHODS: All adults diagnosed with RCC in 2012 and 2013 were identified through population-based cancer registries in the Australian states of Queensland and Victoria. For each patient, research assistants extracted patient, tumour and treatment data from medical records. Percentages of patients treated by PN were determined for the two age groups. Multivariable logistic regression analyses examined factors associated with PN. Clinicians treating RCC were sent surveys to assess attitudes towards PN. RESULTS: Data were collected on 956 patients (Victoria: n = 548; Queensland: n = 404) with stage T1a RCC. Of those undergoing surgery (n = 865), PN was more common for those aged <65 years (61%) than for those aged ≥65 years (44%), with this difference significant after adjusting for patient, tumour (odds ratio 0.50, 95% confidence interval 0.36-0.70). There were significant interactions between age and treatment centre volume (P < 0.05) and residential state (P < 0.05). PN was less likely for younger patients treated at lower-volume hospitals (<24 patients a year) but hospital volume was not associated with PN for older patients. PN was less likely for older patients in Queensland than Victoria. In multivariable analyses, age was not related to laparoscopic surgery. Queensland clinicians were less likely than those from Victoria to agree that PN was the treatment of choice for most T1aN0M0 tumours (P < 0.001). CONCLUSIONS: In Australia, patients aged > 65 years with small renal cancers were less likely to be treated by PN than younger patients. The variation in the surgical procedure used to treat older T1a RCC patients by state and hospital volume indicates that better evidence is needed to direct practice in this area.

Predictors of new-onset chronic kidney disease in patients managed surgically for T1a renal cell carcinoma: An Australian population-based analysis.

BACKGROUND: New-onset chronic kidney disease (CKD) following surgical management of kidney tumors is common. This study evaluated risk factors for new-onset CKD after nephrectomy for T1a renal cell carcinoma (RCC) in an Australian population-based cohort. METHODS: There were 551 RCC patients from the Australian states of Queensland and Victoria included in this study. The primary outcome was new-onset CKD (eGFR <60 mL/min per 1.73 m2 ) and the secondary outcome was new-onset moderate-severe CKD (<45 mL/min per 1.73 m2 ). Multivariable logistic regression was used to evaluate associations between patient, tumor and health-service characteristics and these outcomes. RESULTS: Forty percent (219/551) of patients developed new-onset CKD, and 12% (68/551) experienced new-onset moderate-severe CKD. Risk factors for new-onset CKD were age, lower preoperative eGFR, tumor size >20 mm, radical nephrectomy, lower hospital caseloads (<20 cases/year), and rural place of residence. The associations between rural place of residence and low center volume were a consequence of higher radical nephrectomy rates. CONCLUSION: Risk factors for CKD after nephrectomy generally relate to worse baseline health, or likelihood of undergoing radical nephrectomy. Surgeons in rural centres and hospitals with low caseloads may benefit from formalized integration with specialist centers for continued professional development and case-conferencing, to assist in management decisions.

Integrating referral to community-based cancer information and support services in a hospital setting.

PURPOSE: To implement and evaluate a hospital-based referral mechanism to increase patient uptake of community-based cancer information and support services. Feasibility and acceptability of the intervention and education program was evaluated. Changes in usage of Cancer Council Victoria's cancer information and support telephone line were investigated. METHODS: A 6-month study was conducted in one metropolitan and one regional cancer treatment hospital. Clinicians attended an education session regarding referral mechanisms to Cancer Council support services. Clinicians completed a questionnaire, and consenting patients participated in a semi-structured telephone interview for the project evaluation. The number of calls made from patients at study sites was monitored. RESULTS: Fifty-two clinicians were trained and referred a total of 430 patients to the cancer information and support service during the study period. Calls from patients increased by up to 100% per month from baseline following the implementation of the referral mechanism. Staff evaluations showed support for the referral mechanism and its incorporation into routine practice. Interviews were conducted with 45 patients; most remembered receiving the referral and were positive towards the intervention. Common reasons patients gave for not acting on the referral included forgetting, lack of need, timing and burden of information. CONCLUSIONS: There is preliminary evidence that this intervention increases awareness and uptake of community-based cancer information and support services. Ongoing clinician education and improvements in patient-clinician communication are important for effective translation from referral to service uptake. Consideration of the most appropriate time in a patients' care trajectory to introduce a referral is warranted.

Distress and unmet needs during treatment and quality of life in early cancer survivorship: A longitudinal study of haematological cancer patients.

OBJECTIVE: To examine the influence of anxiety, depression and unmet supportive care needs on future quality of life (QoL) in multiple myeloma (MM) and diffuse large B-cell lymphoma (DLBCL) patients. METHODS: Multiple myeloma and DLBCL patients recruited through the population-based Victorian Cancer Registry. Data were collected through two telephone interviews: (T1) on average 7 months postdiagnosis, (T2) average 8 months later. QoL was examined at T2 using the Functional Assessment of Cancer Therapy (FACT-G) scale. The Hospital Anxiety and Depression Scale measured anxiety and depression, and the Supportive Care Needs Survey measured unmet needs at T1. Multivariate linear regression examined associations between QoL subscales (physical, emotional, social and functional well-being and overall QoL) and T1 anxiety, depression and unmet needs. RESULTS: Except physical well-being, all other QoL subscales and overall QoL were significantly associated with T1 anxiety. All QoL subscales and overall QoL were significantly associated with T1 depression. Only patient care needs were associated with physical and social well-being and overall QoL. CONCLUSION: Anxiety, depression and patient care unmet needs during treatment are associated with diminished physical and emotional well-being in the following months. Psychological distress and unmet supportive care needs experienced during treatment should be addressed to maximise future QoL.

The influence of unmet supportive care needs on anxiety and depression during cancer treatment and beyond: a longitudinal study of survivors of haematological cancers.

OBJECTIVES: This paper aims to examine the cross-sectional and longitudinal associations between patient-reported unmet needs and anxiety and depression for survivors of diffuse large B cell lymphoma (DLBCL) and multiple myeloma (MM). METHODS: In a longitudinal study design, self-reported data were collected through telephone interviews at two time points approximately 7 (T1) and 15 (T2) months post-diagnosis. The sample was recruited through the population-based Victorian Cancer Registry. At T1 and T2, the study outcomes, anxiety and depression, were assessed using the Hospital Anxiety and Depression Scale (HADS) and unmet needs were measured using the Supportive Care Needs Survey (SCNS-SF34). Questions related to social/family problems, relationship problems and financial problems were also asked. A three-step multivariable hierarchical logistic regression analysis examined the relative role of T1 anxiety and depression, T1 and T2 unmet needs and other psychosocial factors with T2 anxiety and depression. RESULTS: Both cross-sectional and longitudinal associations were observed between unmet needs and psychological distress. T2 anxiety was associated with T1 anxiety (OR 4.75, 95% CI 1.86-11.09), T2 psychological needs (OR 1.68, 95% CI 1.34-2.11) and with T1 social problems (OR 2.33, 95% CI 1.03-5.05) in multivariate analysis. T2 depression was associated with both T1 (OR 1.28, 95% CI 1.06-1.57) and T2 psychological needs (OR 1.35, 95% CI 1.06-1.70), T2 physical needs (OR 1.89, 95% CI 1.27-2.81) and T1 depression (OR 4.52, 95% CI 1.88-10.86). CONCLUSIONS: Unmet needs that manifest following diagnosis and treatment may persist into early survivorship and contribute to psychological distress. Addressing these needs during treatment may diminish the risk of current and future anxiety and depression.

What is the role of tobacco control advertising intensity and duration in reducing adolescent smoking prevalence? Findings from 16†years of tobacco control mass media advertising in Australia.

OBJECTIVE: To examine how the intensity and duration of tobacco control advertising relate to adolescent smoking prevalence. METHODS: Australian students (aged 12-17 years) participating in a national survey conducted triennially between 1993 and 2008 (sample size range 12 314-16 611). The outcome measure was students' smoking in the previous 4 weeks collected through anonymous, self-completed surveys. For each student, monthly targeted rating points (TRPs, a measure of television advertising exposure) for tobacco control advertising was calculated for the 3 and 12 months prior to surveying. For each time period, cumulative TRPs exposure and exposure to three intensity levels (≥100 TRPs/month; ≥400 TRPs/month; ≥800 TRPs/month) over increasing durations (eg, 1 month, 2 months, etc) were calculated. Logistic regression examined associations between TRPs and adolescent smoking after controlling for demographic and policy variables. RESULTS: Past 3-month cumulative TRPs were found to have an inverse relationship with smoking prevalence. Low TRPs exposure in the past 12 months was positively associated with adolescent smoking prevalence. However, smoking prevalence reduced with cumulative exposure levels above 5800 cumulative TRPs. Additionally, exposure to ≥400 TRPs/month and ≥800 TRPs/month were associated with reduced likelihood of smoking, although the duration needed for this effect differed for the two intensity levels. When intensity was ≥400 TRPs/month, the odds of smoking only reduced with continuous exposure. When intensity was ≥800 TRPs/month, exposure at levels less than monthly was associated with reductions in smoking prevalence. CONCLUSIONS: Both antismoking advertising intensity and duration are important for ensuring reductions in adolescent smoking prevalence.

Health literacy interventions for informal caregivers: systematic review.

AIM: The aim of the systematic review was to identify conceptual models and interventions designed to improve health literacy in caregivers of adults with a chronic disease/disability. METHODS: MEDLINE, CINAHL, PsycINFO and Embase were searched for relevant literature. Articles were included if they focused on adults who provided informal care to someone aged 18+ with a chronic disease/disability. Quantitative studies were included if they reported an intervention designed to improve caregiver health literacy (CHL) and assessed outcomes using a validated measure of health literacy. Qualitative and mixed method studies were included if they described a conceptual model or framework of CHL or developed/assessed the feasibility of an intervention. Study quality was appraised using the Mixed Methods Assessment Tool. RESULTS: Eleven studies were included. Five studies used pre-post design to assess outcomes of an intervention; four described intervention development and/or pilot testing; two described conceptual models. Two of five studies reported pre-post intervention improvements in CHL; one reported an improvement in one of nine health literacy domains; two reported no improvements following intervention. Interventions predominantly aimed to improve: caregiver understanding of the disease, treatment and potential outcomes, day-to-day care, self-care and health provider engagement. Few interventions targeted broader interpersonal and health service factors identified as influencing CHL. DISCUSSION: Evidence on the development and assessment of comprehensive CHL interventions is scarce. Recommendations include the development of interventions that are guided by a CHL framework to ensure they address individual, interpersonal and health service/provider factors that influence CHL.

Meaningful consumer involvement in cancer care: a systematic review on co-design methods and processes.

OBJECTIVE: Although the benefits of consumer involvement in research and healthcare initiatives are known, there is a need to optimise this for all people with cancer. This systematic review aimed to synthesise and evaluate the application of co-design in the oncology literature and develop recommendations to guide the application of optimal co-design processes and reporting in oncology research, practice, and policy. METHODS: A systematic review of co-design studies in adults with cancer was conducted, searching MEDLINE, CINAHL, Embase and PsycINFO databases and included studies focused on two concepts, co-design and oncology. RESULTS: A total of 5652 titles and abstracts were screened, resulting in 66 eligible publications reporting on 51 unique studies. Four frameworks were applied to describe the co-design initiatives. Most co-design initiatives were designed for use in an outpatient setting (n = 38; 74%) and were predominantly digital resources (n = 14; 27%) or apps (n = 12; 23%). Most studies (n = 25; 49%) used a co-production approach to consumer engagement. Although some studies presented strong co-design methodology, most (n = 36; 70%) did not report the co-design approach and 14% used no framework. Reporting was poor for participant level of involvement, the frequency and time commitment of co-design sessions. Consumer participation level was predominantly collaborate (n = 25; 49%). CONCLUSIONS: There are opportunities to improve the application of co-design in oncology research. This review has generated recommendations to guide i) methodology and frameworks, ii) recruitment and engagement of co-design participants, and iii) evaluation of the co-design process. These recommendations can help drive appropriate, meaningful, and equitable co-design, leading to better cancer research and care.

A human XPC protein interactome--a resource.

Global genome nucleotide excision repair (GG-NER) is responsible for identifying and removing bulky adducts from non-transcribed DNA that result from damaging agents such as UV radiation and cisplatin. Xeroderma pigmentosum complementation group C (XPC) is one of the essential damage recognition proteins of the GG-NER pathway and its dysfunction results in xeroderma pigmentosum (XP), a disorder involving photosensitivity and a predisposition to cancer. To better understand the identification of DNA damage by XPC in the context of chromatin and the role of XPC in the pathogenesis of XP, we characterized the interactome of XPC using a high throughput yeast two-hybrid screening. Our screening showed 49 novel interactors of XPC involved in DNA repair and replication, proteolysis and post-translational modifications, transcription regulation, signal transduction, and metabolism. Importantly, we validated the XPC-OTUD4 interaction by co-IP and provided evidence that OTUD4 knockdown in human cells indeed affects the levels of ubiquitinated XPC, supporting a hypothesis that the OTUD4 deubiquitinase is involved in XPC recycling by cleaving the ubiquitin moiety. This high-throughput characterization of the XPC interactome provides a resource for future exploration and suggests that XPC may have many uncharacterized cellular functions.

Burden prediction in cancer caregivers: role of social support and connectedness.

OBJECTIVES: Caregivers play a key role in providing support to people with cancer. However, caregiving can be stressful and demanding, resulting in perceived caregiver burden. Social connectedness is considered partially independent from social support, yet few studies have examined whether social connectedness impacts caregiver burden. The current study sought to examine: (a) associations among social support, social connectedness and burden in a sample of cancer caregivers and (b) the mediating effect of social connectedness on the relationship between social support and caregiver burden. METHODS: A descriptive cross-sectional study was conducted. Data were collected as part of a larger project. The sample included 125 caregiver-cancer care recipient dyads. Caregivers completed the Social Connectedness Scale-Revised, the Medical Outcomes Study-Social Support Survey and the Zarit Burden Interview. Descriptive statistics, hierarchical multiple regression and mediation analyses were used to examine relationships between variables. RESULTS: Correlation analyses showed higher perceived social support and social connectedness were significantly correlated with lower-reported caregiver burden (p<0.05). The hierarchical regression model showed that both social support and social connectedness were independent predictors of caregiver burden (p<0.001). Social connectedness partially mediated the relationship between social support and caregiver burden. CONCLUSIONS: This study provides new evidence that social support buffers the negative effects of burden in caregivers, suggesting these are potentially modifiable factors of caregiver burden. Increased understanding of the factors that contribute to burden among cancer caregivers will inform targeted supportive care strategies to improve psychological health and well-being in this underserved group.

Can a tailored telephone intervention delivered by volunteers reduce the supportive care needs, anxiety and depression of people with colorectal cancer? A randomised controlled trial.

OBJECTIVE: The objective was to assess the effectiveness of a volunteer-delivered tailored telephone-based intervention in reducing prevalence of unmet supportive care needs, elevated levels of anxiety and depression among people with colorectal cancer over a 9-month period. METHODS: There were 653 participants who completed the baseline questionnaire and were randomised to usual care (n = 341) or intervention (n = 306). Three follow-up questionnaires were completed at 3-monthly intervals (response rates: 93%, 87%, 82%, respectively). All four questionnaires contained the Supportive Care Needs Survey (SCNS), Hospital Anxiety and Depression Scale (HADS) and checklists for colorectal cancer symptoms and use of support services. The intervention consisted of trained volunteers providing emotional support, service referral and information and was delivered after completion of each of the first three questionnaires. Primary outcomes were prevalence of moderate to high SCNS needs and elevated levels (scores of 8+) of HADS anxiety and depression. RESULTS: Over the study period, SCNS needs decreased similarly for both groups, and prevalence of elevated depression did not change for either group. There was a greater reduction in the prevalence of elevated anxiety in the intervention than usual care group (p < 0.01), with the intervention group decrease mainly occurring between baseline and the first follow-up survey (p < 0.01). However, the prevalence of elevated anxiety was similar between the two groups at each follow-up point. CONCLUSIONS: The intervention had no effect on supportive care needs or depression, although it may be associated with a greater reduction in anxiety. Future research should test the intervention with patients closer to diagnosis.

What public health strategies are needed to reduce smoking initiation?

Smoking initiation is a key behaviour that determines the future health consequences of smoking in a society. There is a marked difference in smoking patterns around the world, driven by initiation rates. While a number of high-income countries have seen smoking prevalence decline markedly from peak, many low-income and middle-income countries appear to still be on an upward trend. Unlike cessation where changes are limited by nicotine dependence, rates of smoking initiation can change rapidly over a short time span. Interventions that can be effective in achieving this include increases in the price of tobacco products, mass media anti-smoking advertising, smoke-free policies, smoking curricula in schools, restrictions on marketing opportunities for the tobacco industry as well as social norms that lead to restrictions on adolescents' ability to purchase cigarettes. Comprehensive tobacco control programmes that aim to denormalise smoking behaviour in the community contain all of these interventions. Rapid reductions in smoking initiation in adolescents have been documented in two case studies of comprehensive tobacco control programmes in California and Australia. Consistent and inescapable messages from multiple sources appear to be key to success. However, the California experience indicates that the rapid decline in adolescent smoking will not continue if tobacco control expenditures and the relative price of cigarettes are reduced. These case studies provide strong additional evidence of the importance of countries implementing the provisions of the Framework Treaty on Tobacco Control.