Alix Hall

Travelling all over the countryside: travel-related burden and financial difficulties reported by cancer patients in New South Wales and Victoria.

OBJECTIVE To describe travel burden and travel-related financial burden experienced by cancer patients over the first year after diagnosis. DESIGN, SETTING, PARTICIPANTS Population-based longitudinal cohort of recent adult cancer patients diagnosed with the eight most incident cancers recruited from New South Wales and Victorian Cancer Registries. Self-report survey data were collected at 6 and 12 months after diagnosis from 1410 participants (city: n = 890; regional/remote: n = 520). MAIN OUTCOME MEASURES Travel time to cancer treatment, living away from home for treatment, travel-related treatment decisions, extent of financial issues, unmet need for financial help. RESULTS During the first 12 months after diagnosis, outer regional/remote residents had the greatest travel burden; 61% (n = 79) travelled at least 2 hours one way to receive treatment, and 49% (n = 66) lived away from home to receive treatment. Strongest associates of travel burden were living in regional/remote areas (odds ratio (OR) = 18.9-135.7), having received surgery (OR = 6.7) or radiotherapy (OR = 3.6). Between 6 and 12 months after diagnosis, 2% (n = 24) of patients declined cancer treatment because of the time it would take to get to treatment. Patients who travelled more than 2 hours or lived away for treatment reported significantly greater financial difficulties (38%; 40%) than those who did not (12%; 14%), even after adjusting for covariates. CONCLUSIONS Travel burden is greatest for rural patients, and is associated with greater financial burden. Appropriate and adequate provision of travel and accommodation assistance schemes remains paramount to achieving equitable delivery of cancer services.

Unmet needs of Australian and Canadian haematological cancer survivors: a cross-sectional international comparative study.

Few population‐based studies have assessed the needs of haematological cancer survivors or conducted international comparisons. We aimed to assess and compare the unmet needs of Australian and Canadian haematological cancer survivors.

How will we close the gap in smoking rates for pregnant Indigenous women

Aboriginal and Torres Strait Islander women are more than three times more likely to smoke during pregnancy than non‐Indigenous women, greatly increasing the risk of poor birth outcomes. Our systematic review found that there is currently no evidence for interventions that are effective in supporting pregnant Aboriginal and Torres Strait Islander women to quit smoking, which impedes development and implementation of evidence‐informed policy and practice. There is an urgent need for methodologically rigorous studies to test innovative approaches to addressing this problem.

Supportive care needs of hematological cancer survivors: A critical review of the literature

The purpose of this review was to determine the perceived supportive care needs of hematological cancer survivors, and the patient characteristics associated with higher levels of need. Medline, PsychInfo, CINAHL, EMBASE and PsycEXTRA, were searched for eligible articles published between 1979 and 2011. Ten full-text articles were identified. Extensive variation among study populations, methodologies and needs assessment measures used, made it difficult to synthesize results. Consequently, we could not confidently determine the most prevalent perceived needs of hematological cancer survivors. However, the limited data loosely suggests that concerns surrounding cancer recurrence and survival may be predominant needs experienced by hematological cancer survivors. Younger survivors were also identified by several studies as reporting higher levels of several areas of need. Future research is needed to assess the supportive care needs of large heterogeneous, population-based samples of hematological cancer survivors, utilizing valid, reliable and standardized measures of supportive care needs.

Improving Access to Information and Support for Patients With Less Common Cancers: Hematologic Cancer Patients’ Views About Web-Based Approaches

Background Meeting the psychosocial needs of vulnerable groups such as cancer survivors remains an ongoing challenge. This is particularly so for those who have less access to the usual forms of medical specialist and in-person support networks. Internet-based approaches offer an opportunity to better meet patients’ information and support needs by overcoming the barrier of geographic isolation. Objective The aim of the study was to assess the reported level of access to the Internet, preferred sources of information, and preferred sources of support among survivors of hematologic cancers. Method A population-based, Australian state cancer registry invited eligible survivors to complete a survey about psychosocial needs, including items measuring Internet access and patterns of use. Of the 732 eligible survivors invited to participate, 268 (36.6%) completed and returned the pen-and-paper-based survey. Results The majority of participants (186/254, 73.2%) reported a high level of access to the Internet, with higher Internet access associated with a higher level of education, larger household, younger age, and being married or employed. A total of 62.2% (156/251) of survivors indicated they were likely to use the Internet for accessing information, with the percentage much lower (69/251, 28%) for accessing support via the Internet. Likelihood of using the Internet for support was associated with feeling anxious and being employed. Conclusions While the Internet appears to offer promise in increasing equitable access to information and support for cancer survivors for both metropolitan and regional areas, it is viewed less favorably for support and by particular subgroups (eg, older people and those without a university degree) within the survivor population. Promoting greater understanding of this mode of support may be required to achieve its potential. Information and support options other than Web-based approaches may continue to be needed by vulnerable groups of cancer survivors.

Access to care and impacts of cancer on daily life: do they differ for metropolitan versus regional hematological cancer survivors?

PURPOSE Little is known about access to care for hematological cancer patients. This study explored patient experiences of barriers to accessing care and associated financial and social impacts of the disease. Metropolitan versus nonmetropolitan experiences were compared. METHODS A state-based Australian cancer registry identified adult survivors of hematological cancers (including lymphoma, leukemia and myeloma) diagnosed in the previous 3 years. Survivors were mailed a self-report pen and paper survey. FINDINGS Of the 732 eligible survivors, 268 (37%) completed a survey. Forty percent of participants reported at least one locational barrier which limited access to care. Only 2% reported cancer-related expenses had restricted their treatment choices. Almost two-thirds (64%) reported at least one financial or social impact on their daily lives related to cancer. The most frequently reported impacts were the need to take time off work (44%) and difficulty paying bills (21%). Survivors living in a nonmetropolitan location had 17 times the odds of reporting locational or financial barriers compared with those in metropolitan areas. Preferred potential solutions to alleviate the financial and social impacts of the disease were: free parking for tests or treatment (37%), free medications or treatments (29%), and being able to get treatment in their local region (20%). CONCLUSIONS Providing more equitable access to care for hematological cancer patients in Australia requires addressing distances traveled to attend treatment and their associated financial and social impacts on nonmetropolitan patients. Greater flexibility in service delivery is also needed for patients still in the workforce.

Financial and social impact of supporting a haematological cancer survivor

Support persons of haematological cancer survivors may be faced with unique challenges due to the course of these diseases and the treatments required. This study aimed to examine the social and financial impacts associated with their role. Eight hundred adult survivors of haematological cancer within 3 years of diagnosis were invited via an Australian state population-based cancer registry to complete a survey. Survivors were mailed two questionnaire packages, one for themselves and one for their primary support person. Non-respondents were mailed reminders via the survivor after 3 weeks. One hundred and eighty-two support persons completed the questionnaire (85% response rate). Of these, 67 (46%) support persons reported having at least one personal expense and 91 (52%) experienced at least one financial impact. Male support persons and support persons of survivors in active treatment reported experiencing more personal expenses than other support persons. Older participants reported fewer financial consequences. A greater number of social impacts were reported by those born outside Australia, those who had to relocate for treatment and support persons of survivors in active treatment. Future research should focus on practical solutions to reducing these impacts on support persons.

A systematic review of the quality of reporting in published smoking cessation trials for pregnant women: an explanation for the evidence-practice gap?

BackgroundTo facilitate translation of evidence into clinical practice, it is critical that clear, specific, and detailed information about interventions is provided in publications to promote replication, appropriate aggregation in meta-analysis, and implementation. This study examined whether twenty elements of interventions deemed essential for such translational application were reported in sufficient detail in smoking cessation trials with pregnant women.MethodsSearches of electronic databases using MeSH terms and keywords identified peer-reviewed English language studies published between 2001 and 2012. Eligible studies reported a smoking cessation intervention targeted at pregnant women and met Cochrane’s Effective Practice and Organization of Care group study design criteria. Each intervention arm of eligible studies was assessed against the developed twenty criteria.ResultsThirty relevant studies reported the findings of 45 intervention arms. The mode of delivery of the intervention was reported in 100% of intervention arms. Other well-reported criteria included reporting of the provider who delivered the intervention (96%), sample characteristics (80%), and the intervention setting (80%). Criteria not reported adequately included care provided to women who relapse (96% not reported), details about training given to providers (77% not reported), and the method of quit advice advised (76% not reported). No studies reported 100% of relevant criteria.ConclusionsCurrent standards of reporting of intervention content and implementation are suboptimal. The use of smoking cessation specific checklists for reporting of trials, standard reporting using behaviour change taxonomies, and the publication of protocols as supplements should be considered as ways of improving the specificity of reporting.

The Survivor Unmet Needs Survey (SUNS) for haematological cancer survivors: a cross-sectional study assessing the relevance and psychometric properties

BackgroundRelevant and psychometrically sound needs assessment tools are necessary for accurate assessment of haematological cancer survivors unmet needs. No previous study has developed nor psychometrically evaluated a comprehensive needs assessment tool for use with population-based samples of haematological cancer survivors. This study aimed to assess the validity and reliability of the Survivor Unmet Needs Survey (SUNS) with haematological cancer survivors.MethodsThe relevance, content and face validity of the SUNS to haematological cancer survivors was assessed using qualitative interviews. Psychometric evaluation was conducted using data collected from haematological cancer survivors, aged 18–80 years at recruitment and recruited from four Australian cancer registries. Construct, convergent and discriminant validity; internal reliability and floor and ceiling effects were assessed. A second survey was completed by a sub-sample of survivors recruited from two of the four registries to assess test-retest reliability.ResultsResults from 17 qualitative interviews confirmed the relevance, face and content validity of the original items of the SUNS for use with haematological cancer survivors. Overall, 1,957 eligible haematological cancer survivors were contacted by the cancer registries. Of these 1,280 were sent a survey, and 715 returned a survey (37% of eligible survivors contacted and 56% of survivors sent a survey). A total of 529 survivors completed all 89 items of the SUNS and were included in the exploratory factor analysis. Exploratory factor analysis supported the original five-factor structure of the SUNS. Evidence for convergent validity was established, with all five domains of the SUNS illustrating a moderate positive correlation with all three subscales of the Depression Anxiety and Stress Scale (DASS-21). All Cronbach’s alpha values were above 0.9 and all corrected item-total correlations were acceptable (>0.2). Criteria for discriminant validity was not met, with only 10 of the 15 (67%) a-priori hypotheses supported. Test-retest reliability was acceptable for 40 of the 89 items (45%) and for three of the five domains. Significant floor effects were evident for all five domains.ConclusionsThe SUNS demonstrates evidence for multiple features of validity and reliability as a measure of unmet needs for haematological cancer survivors. However, evidence supporting some psychometric properties was limited.

Alignment of systematic reviews published in the Cochrane Database of Systematic Reviews and the Database of Abstracts and Reviews of Effectiveness with global burden-of-disease data: a bibliographic analysis

Background Systematic reviews of high-quality evidence are used to inform policy and practice. To improve community health, the production of such reviews should align with burden of disease. This study aims to assess if the volume of research output from systematic reviews proportionally aligns with burden of disease assessed using percentages of mortality and disability-adjusted life years (DALYs). Methods A cross-sectional audit of reviews published between January 2012 and August 2013 in the Cochrane Database of Systematic Reviews (CDSR) and Database of Abstracts of Reviews of Effects (DARE) was undertaken. Percentages of mortality and DALYs were obtained from the 2010 Global Burden of Disease study. Standardised residual differences (SRD) based on percentages of mortality and DALYs were calculated, where conditions with SRD of more than or less than three were considered overstudied or understudied, respectively. Results 1029 reviews from CDSR and 1928 reviews from DARE were examined. There was a significant correlation between percentage DALYs and systematic reviews published in CDSR and DARE databases (CDSR: r=0.68, p=0.001; DARE: r=0.60, p<0.001). There was no significant correlation between percentage mortality and number of systematic reviews published in either database (CDSR: r=0.34, p=0.14; DARE: r=0.22, p=0.34). Relative to percentage of mortality, mental and behavioural disorders, musculoskeletal conditions and other non-communicable diseases were overstudied. Maternal disorders were overstudied relative to percentages of mortality and DALYs in CDSR. Conclusions The focus of systematic reviews is moderately correlated with DALYs. A number of conditions may be overstudied relative to percentage of mortality particularly in the context of health and medical reviews.