Alison Zucca

Prevalence and correlates of cancer survivors’ supportive care needs 6 months after diagnosis: a population-based cross-sectional study

BackgroundAn understanding of the nature and magnitude of the impact of cancer is critical to planning how best to deliver supportive care to the growing population of cancer survivors whose need for care may span many years. This study aimed to describe the prevalence of and factors associated with moderate to high level unmet supportive care needs among adult cancer survivors six months after diagnosis.MethodsA population-based sample of adult cancer survivors diagnosed with one of the eight most incident cancers in Australia was recruited from two state-based cancer registries. Data for 1323 survivors were obtained by self-report questionnaire and linkage with cancer registry data. Unmet needs were assessed by the 34-item Supportive Care Needs Survey (SCNS-SF34). The data were examined using chi-square and multiple logistic regression analyses.ResultsA total of 444 (37%) survivors reported at least one ‘moderate to high’ level unmet need and 496 (42%) reported ‘no need’ for help. Moderate to high level unmet needs were most commonly reported in the psychological (25%) and physical aspects of daily living (20%) domains. The five most frequently endorsed items of moderate to high unmet need were concerns about the worries of those close to them (15%), fears about the cancer spreading (14%), not being able to do the things they used to do (13%), uncertainty about the future (13%) and lack of energy/tiredness (12%). Survivors’ psychological characteristics were the strongest indicators of unmet need, particularly caseness for anxious preoccupation coping which was associated (OR = 2.2-5.9) with unmet need for help across all domains.ConclusionsUnmet supportive care needs are prevalent among a subgroup of survivors transitioning from active treatment to survivorship, although lower than previously reported. In addition to coping support, valuable insight about how to prevent or address survivors’ unmet needs could be gained by examining the substantial proportion of survivors who report no unmet needs.

Prevalence and predictors of the short-term trajectory of anxiety and depression in the first year after a cancer diagnosis: a population-based longitudinal study.

PURPOSE Few studies have examined psychological adjustment for cancer survivors in late treatment and early survivorship stages. Our study investigated the prevalence and short-term trajectories of anxiety, depression, and comorbid anxiety-depression among adult cancer survivors, and identified the individual, disease, health behavior, psychological, and social predictors of chronic and late psychological morbidity. METHODS A heterogeneous sample of adult cancer survivors was recruited from two state-based cancer registries. A total of 1,154 survivors completed self-report questionnaires at 6 (Time 1) and 12 months (Time 2) postdiagnosis. Anxiety and depression were assessed by the Hospital Anxiety and Depression Scale with cases identified by a subscale cutoff score ≥ 8. Logistic regression analyses identified Time 1 characteristics associated with anxiety and/or depression at Time 2. RESULTS The point prevalence of anxiety (Time 1, 22%; Time 2, 21%), depression (13% at both timepoints) and comorbid anxiety-depression (9% at both timepoints) was similar at 6 and 12 months postdiagnosis. The most prevalent Time 1 to Time 2 trajectory was noncase for anxiety (70%), depression (82%), and comorbid anxiety-depression (87%). While psychological morbidity at Time 1 was the strongest predictor of psychological morbidity at Time 2, being diagnosed with lung cancer and health risk behaviors (smoking, insufficient physical activity) were also strong predictors. CONCLUSION Targeted psychological screening of vulnerable survivors and early intervention may prevent the onset and/or reduce the severity of psychological morbidity in early survivorship. Trials of risk reduction interventions targeting psychological functioning and health risk behaviors seem warranted.

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.

Life is precious and I'm making the best of it: coping strategies of long-term cancer survivors.

Objective: Coping strategies mediate the relationship between challenging situations and their impact on psychosocial outcomes. Many long‐term cancer survivors continue to face a range of challenges in their daily lives, yet little is known about how this population copes. The study explored the prevalence and predictors of cancer‐specific coping strategies among a heterogeneous sample of long‐term cancer survivors.

Patient-centred care: making cancer treatment centres accountable

Patient-centred care is argued to be an essential component in the delivery of quality health and cancer care. This manuscript discusses the need to generate credible data which indicates the quality of patient-centred care provided by cancer treatment centres. Patient-centred care covers six domains including physical comfort; emotional support; respect for patients’ preferences and values; integration and coordination; involvement of family and friends; and the provision of information, communication and education to enable patients to understand and make informed decisions about their care. First, we identify priority areas within each domain. Next, we propose three questions that should be asked of every patient across the six domains of patient-centred care. The first question explores whether patients were specifically asked by a healthcare provider at the cancer treatment centre about their concerns, values and preferences. Research indicates that it cannot be assumed that clinicians are aware of patient’s needs or preferences in these six areas. Second, if the answer from the patient suggests that they would like assistance, then it would be expected that this would be offered. Thirdly, if the patient indicates that they would like such assistance and it is provided, then it might be expected that the patient would report that the provided assistance did relieve their suffering, or the assistance provided was consistent with their preferences, needs and values. Regular measurement and reporting of these aspects of patient-centred cancer care has the potential to identify deficits and inequities in care delivery, allow for comparisons across treatment centres and stimulate an improvement in the patient-centred care provided to cancer patients.

Measuring the quality of patient-centered care: why patient-reported measures are critical to reliable assessment

Purpose The Institute of Medicine (IOM) identified patient-centeredness as crucial to quality health care. The IOM endorsed six patient-centeredness dimensions that stipulated that care must be: respectful to patients’ values, preferences, and expressed needs; coordinated and integrated; provide information, communication, and education; ensure physical comfort; provide emotional support; and involve family and friends. Patient-reported measures examine the patient’s perspective and are essential to the accurate assessment of patient-centered care. This article’s objectives are to: 1) use the six IOM-endorsed patient-centeredness dimensions as a framework to outline why patient-reported measures are crucial to the reliable measurement of patient-centered care; and 2) to identify existing patient-reported measures that assess each patient-centered care dimension. Methods For each IOM-endorsed patient-centeredness dimension, the published literature was searched to highlight the essential role of patients in assessing patient-centered care and informing quality improvement efforts. Existing literature was also searched to identify examples of patient-reported measures that assess each patient-centeredness dimension. Conclusion Patient-reported measures are arguably the best way to measure patient-centeredness. For instance, patients are best positioned to determine whether care aligns with patient values, preferences, and needs and the Measure of Patient Preferences is an example of a patient-reported measure that does so. Furthermore, only the patient knows whether they received the level of information desired, and if information was understood and can be recalled. Patient-reported measures that examine information provision include the Lung Information Needs Questionnaire and the EORTC QLQ-INFO25. In relation to physical comfort, only patients can report the severity of physical symptoms and whether medications provide adequate relief. Patient-reported measures that investigate physical comfort include the Pain Care Quality Survey and the Brief Pain Inventory. Using patient-reported measures to regularly measure patient-centered care is critical to identifying areas of health care where improvements are needed.

Rasch analysis of the Mini-Mental Adjustment to Cancer Scale (mini-MAC) among a heterogeneous sample of long-term cancer survivors: A cross-sectional study

BackgroundThe mini-Mental Adjustment to Cancer Scale (mini-MAC) is a well-recognised, popular measure of coping in psycho-oncology and assesses five cancer-specific coping strategies. It has been suggested that these five subscales could be grouped to form the over-arching adaptive and maladptive coping subscales to facilitate the interpretation and clinical application of the scale. Despite the popularity of the mini-MAC, few studies have examined its psychometric properties among long-term cancer survivors, and further validation of the mini-MAC is needed to substantiate its use with the growing population of survivors. Therefore, this study examined the psychometric properties and dimensionality of the mini-MAC in a sample of long-term cancer survivors using Rasch analysis.MethodsRUMM 2030 was used to analyse the mini-MAC data (n=851). Separate Rasch analyses were conducted for each of the original mini-MAC subscales as well as the over-arching adaptive and maladaptive coping subscales to examine summary and individual model fit statistics, person separation index (PSI), response format, local dependency, targeting, item bias (or differential item functioning -DIF), and dimensionality.ResultsFor the fighting spirit, fatalism, and helplessness-hopelessness subscales, a revised three-point response format seemed more optimal than the original four-point response. To achieve model fit, items were deleted from four of the five subscales – Anxious Preoccupation items 7, 25, and 29; Cognitive Avoidance items 11 and 17; Fighting Spirit item 18; and Helplessness-Hopelessness items 16 and 20. For those subscales with sufficient items, analyses supported unidimensionality. Combining items to form the adaptive and maladaptive subscales was partially supported.ConclusionsThe original five subscales required item deletion and/or rescaling to improve goodness of fit to the Rasch model. While evidence was found for overarching subscales of adaptive and maladaptive coping, extensive modifications were necessary to achieve this result. Further exploration and validation of over-arching subscales assessing adaptive and maladaptive coping is necessary with cancer survivors.

Socio-demographic and medical correlates of the use of biologically based complementary and alternative medicines amongst recent Australian cancer survivors.

OBJECTIVE Describe the socio-demographic/medical correlates of the use of biologically based complementary and alternative medicines (BBCAM) amongst a heterogeneous sample of recent cancer survivors. METHOD Cross-sectional analysis was undertaken on the baseline data of a population-based longitudinal study conducted in New South Wales and Victoria, Australia (2006-2008) of cancer survivors 6 months post diagnosis. Participants (n=1323) completed a self-report survey assessing socio-demographic/medical characteristics and use of BBCAM (dietary supplements or vitamins, herbal treatments, and special diets). RESULTS Twenty-seven percent of respondents (n=349) reported using at least one BBCAM to help manage their cancer and related symptoms. Nutritional supplements and vitamins were the most commonly reported BBCAM (23%). Correlates of BBCAM use included cancer type (bowel [OR=3.3; CI:1.8-5.9], breast [OR=2.4; CI:1.4-4.1], head and neck [OR=3.8; CI: 2.0-7.2], haematological [OR=2.0; CI: 1.1-3.7], prostate [OR=1.8; CI: 1.0-3.9] versus melanoma), education level (university degree [OR=1.6; CI:1.1-2.3] versus secondary school) and treatment types (chemotherapy [OR=2.0; CI:1.4-2.7] versus not, bone marrow/stem cell transplant/immunotherapy [OR=2.3; CI:1.2-4.4] versus not). CONCLUSION Providers should openly discuss the use of complementary and alternative therapies with all cancer patients, and given potential safety concerns, be proactive in exploring BBCAM use among the subgroups of survivors identified in this study.

Sun Protection Attitudes and Behaviours Among First Generation Australians with Darker Skin Types: Results from Focus Groups

Despite residing in a country that has the highest rates of skin cancer in the world, little is known about the knowledge, attitudes and sun protection practices of first generation Australian-born individuals with olive and darker skin types. Six focus groups with first generation Australian-born individuals of Asian, Mediterranean, Middle Eastern and Indian background were conducted. Participants had good knowledge of the dangers of skin cancer. Most correctly perceived darker skin types as protective and believed they were at low risk of skin cancer. Most participants could recall high profile mass media sun protection campaigns. Several participants suggested that greater representation of ethnic minorities and/or individuals with darker skin types would increase the personal relevance of campaigns. Beliefs that sun protection is not necessary on the basis of skin type highlights the need for further studies to explore fundamental differences in attitudes and practices between those with olive and darker skin and the general Australian population.

Does screening for physical and psychosocial symptoms vary between medical oncology treatment centres

Our aim is to examine whether provider screening for physical and emotional symptoms, as reported by medical oncology outpatients, varies across medical oncology treatment centres.