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Abstract Background Colorectal cancer (CRC) is among the leading causes of cancer-related morbidity and mortality worldwide. Despite clinical practice guidelines to guide surveillance care for those who have completed treatment for this disease as well as screening for first degree relatives of people with CRC, the level of uptake of these recommendations remains uncertain. If outcomes for both patients and their families are to be improved, it is important to establish systematic and cost-effective interventions to improve adherence to guideline recommendations for CRC surveillance and screening. Methods/Design A randomized controlled trial will be used to test the effectiveness of a print-based intervention to improve adherence to colonoscopy surveillance among people with CRC and adherence to CRC screening recommendations among their first degree relatives (FDRs). People diagnosed with CRC in the past 10 months will be recruited through a population-based cancer registry. Consenting participants will be asked if their first degree relatives might also be willing to participate in the trial. Information on family history of CRC will be obtained from patients at baseline. Patients and their families will be randomized to either minimal ethical care or the print-based intervention. The print-based intervention for FDRs will be tailored to the participant's level of risk of CRC as determined by the self-reported family history assessment. Follow up data on surveillance and screening participation will be collected from patients and their FDRs respectively at 12, 24 and 36 months' post recruitment. The primary analyses will relate to comparing levels of guideline adherence in usual care group versus print-based group in the patient sample and the FDR sample respectively. Discussion Results of this study will provide contribute to the evidence base about effective strategies to a) improve adherence to surveillance recommendation for people with CRC; and b) improve adherence to screening recommendation for FDRs of people with CRC. The use of a population-based cancer registry to access the target population may have significant advantages in increasing the reach of the intervention. Trial registration This trial is registered with the Australian and New Zealand Clinical Trials Registry Registration Number (ACTRN): ACTRN12609000628246.

Abstract Background Adolescents and young adult (AYA) cancer survivors may have unique physical, psychological and social needs due to their cancer occurring at a critical phase of development. The aim of this study was to develop a psychometrically rigorous measure of unmet need to capture the specific needs of this group. Methods Items were developed following a comprehensive literature review, focus groups with AYAs, and feedback from health care providers, researchers and other professionals. The measure was pilot tested with 32 AYA cancer survivors recruited through a state-based cancer registry to establish face and content validity. A main sample of 139 AYA cancer patients and survivors were recruited through seven treatment centres and invited to complete the questionnaire. To establish test-retest reliability, a sub-sample of 34 participants completed the measure a second time. Exploratory factor analysis was performed and the measure was assessed for internal consistency, discriminative validity, potential responsiveness and acceptability. Results The Cancer Needs Questionnaire - Young People (CNQ-YP) has established face and content validity, and acceptability. The final measure has 70 items and six factors: Treatment Environment and Care (33 items); Feelings and Relationships (14 items); Daily Life (12 items); Information and Activities (5 items); Education (3 items); and Work (3 items). All domains achieved Cronbach's alpha values greater than 0.80. Item-to-item test-retest reliability was also high, with all but four items reaching weighted kappa values above 0.60. Conclusions The CNQ-YP is the first multi-dimensional measure of unmet need which has been developed specifically for AYA cancer patients and survivors. The measure displays a strong factor structure, and excellent internal consistency and test-retest reliability. However, the small sample size has implications for the reliability of the statistical analyses undertaken, particularly the exploratory factor analysis. Future studies with a larger sample are recommended to confirm the factor structure of the measure. Longitudinal studies to establish responsiveness and predictive validity should also be undertaken.

Objective: Using a vignette-style DCE in a sample of oncology patients, this study explored: (1) the relative influence of the patient's level of concern about their depression on preferences for care, (2) the relative influence of depression severity according to a mental health checklist on preferred treatment-seeking options, and (3) whether patient age and gender were associated with depression care preference.Methods: A discrete choice experiment (DCE) survey of cancer patients was conducted. Hypothetical vignettes to elicit care preferences were created using two attributes: the cancer patient's level of concern about depression (a little or a great deal) and results of a mental health checklist (not depressed or very depressed). Three response options for care preferences were presented, including a self-directed approach, shared care approach, and clinician-directed referral approach. Participants chose their most and least preferred options.Results: A total of 281 cancer patients completed the survey. There was a significant association between level of concern and the most preferred option. Those with a great deal of concern about depression preferred to receive referral from their clinician more than those with a little concern about depression. Males were significantly more likely to select a self-directed approach as their most preferred option.Conclusions: An oncology patient's level of concern about depression may influence the type of care they want to receive from their cancer doctor for depression. This finding has implications for depression screening in clinical practice. [ABSTRACT FROM AUTHOR]

Objective: We examined whether patients reporting not having adequate time to make a treatment decision is associated with discordance between their preferred and perceived involvement in decision making.Methods: This was a secondary analysis of a cross-sectional study involving Australian outpatients attending five medical or radiation oncology units. Logistic regression modelling was conducted.Results: Four hundred twenty-three patients participated. Patients who reported not having adequate time to make their last important treatment decision had significantly higher odds of experiencing discordance between their preferred and perceived involvement in this decision, compared to those patients who reported having adequate time (OR: 2.76; 95% CI: 1.01-7.55; p = 0.048).Conclusion: Patients should receive adequate time when making cancer treatment decisions. This may help patients "digest" and use the information they received, and become involved in decision making, to the extent they desire. Future research should further investigate what patients consider adequate time for decision making.Practice Implications: Doctors should assess patients' preferences for the amount of time they prefer when making a treatment decision and tailor care accordingly. Offering patients two consultations with some time to think about their options in-between these consultations may be one method in achieving this. [ABSTRACT FROM AUTHOR]

Objective: To describe among radiation oncology patients: (1) the proportion likely to be experiencing symptoms of depression and anxiety as identified by (a) the Hospital Anxiety and Depression Scale (HADS; standardised tool), (b) patient-reported single items (ultrashort tool), and (c) radiation oncologist-reported single items (clinician judgement); (2) preferences for being offered psychological support; and (3) agreement between single-item measures and the HADS.Methods: Adult cancer patients (n = 152; consent rate 58%) receiving radiotherapy completed a touchscreen tablet survey assessing symptoms of anxiety and depression (HADS and a single-item tool) and support preferences. Each participant's treating radiation oncologist completed a survey assessing his or her perception of whether the patient was anxious or depressed.Results: Prevalence estimates for likely depression (6.9-18%) and anxiety (17-33%) overlapped across the 3 measures. Overall, only 9.9% of patients (95% CI, 5.6%-16%) wanted to be offered psychological support. For depression, agreement between the HADS and ultrashort tool was fair (κ = 0.37, P < 0.0001); agreement between the HADS and clinician judgement was slight (κ = 0.14, P < 0.05). For anxiety, agreement between the HADS and clinician judgement was not significantly greater than chance alone (κ = 0.04, P = 0.33), and agreement between the HADS and ultrashort tool was moderate (κ = 0.49, P < 0.0001).Conclusions: These findings highlight the important role that oncology consultations play in interpreting assessment tool results and responding to individual patient's history and preferences for psychological support. [ABSTRACT FROM AUTHOR]

Anxiety and depression can be heightened among individuals living with chronic diseases. Identifying these individuals is necessary for ensuring they are provided with adequate support. Traditional tools such as clinical interviews or symptom checklists are not always feasible to implement in practice. Robust single-item questions may be a useful alternative. This study aimed to measure agreement, sensitivity, specificity, positive predictive value and negative predictive value of a single-item question about anxiety and depression compared to the widely used Hospital Anxiety and Depression Scale (HADS). A cross-sectional survey of 2,811 people with cancer attending 19 treatment centres in Australia. Patients were approached in the waiting room prior to an outpatient clinic appointment and invited to complete a pen and paper survey. Participants completed the HADS as well as 2 single-items asking if they have felt anxious or depressed in the last week. The single-items for anxiety and depression each demonstrated moderate levels of sensitivity (0.78 for anxiety; 0.63 for depression) and specificity (0.75 for anxiety; 0.84 for depression) against the relevant HADS subscale. Positive predictive values were moderate (0.53 for anxiety and 0.52 for depression) while negative predictive values were high for both single-item questions (0.90 for anxiety and 0.89 for depression). The single-item measures of anxiety and depression may be useful to rule out individuals who do not require further psychological assessment or intervention for anxiety and depression. Further research is needed to explore whether these findings generalise to other chronic diseases. [ABSTRACT FROM AUTHOR]

Background The perceptions of those called on to make decisions on behalf of patients who lack capacity at the end of life must accurately reflect patient preferences. Aims To establish the extent to which the views of medical oncology outpatients are understood by their support persons, specifically with regards to (i) preferred type and location of end-of-life care, (ii) preferred level of involvement in end-of-life decision-making and (iii) whether the patient has completed an advance care plan or appointed an enduring guardian. Methods Adults with a confirmed cancer diagnosis and their nominated support persons were approached between September 2015 and January 2016 in the waiting room of an Australian tertiary referral clinic. Consenting participants completed a pen-and-paper survey. Nominated support persons answered the same questions from the patient's perspective. Results In total, 208 participants (39% of eligible dyads) participated. Observed agreement across the five outcomes ranged from 54% to 84%. Kappa values for concordance between patient-support person responses were fair to moderate (0.24-0.47) for enduring guardian, decision-making, advance care plan and care location outcomes. A slight level of concordance ( k = 0.15; 95% confidence interval: −0.02, 0.32) was found for the type of care outcome. Conclusion Relying on support persons' views does not guarantee that patients' actual preferences will be followed. Strategies that make patient preferences known to healthcare providers and support persons while they still have the capacity to do so is a critical next step in improving quality cancer care. [ABSTRACT FROM AUTHOR]

Objective To compare the prevalence of anxiety, depression, and stress among rural and urban support persons of haematological cancer survivors and explore factors associated with having one or more of these outcomes. Methods Haematological cancer survivors were identified via 1 of 5 state-based cancer registries and invited to take part in a survey. Those who agreed were asked to pass on a questionnaire package to their support person. Measures included the Depression, Anxiety, and Stress Scale, Support Persons' Unmet Need Survey, and sociodemographic questions. Results Nine-hundred and eighty-nine (66%) participating survivors had a participating support person. There were no significant differences in the proportion of urban versus rural support persons who reported elevated levels of depression (21% vs 23%), anxiety (16% vs 17%), or stress (16% vs 20%), P > .05. Odds of reporting at least 1 indicator of psychological morbidity increased by 10% to 17% for each additional high or very high unmet need and by 2% for those who had relocated from their usual place of residence for the survivor to receive treatment and was decreased by 5% to 54% for those support persons who reported that they had no chronic health conditions. Conclusions Psychological outcomes for rural and urban support persons are similar. Those who have poor health, have had to relocate, and who have multiple unmet needs are particularly vulnerable to poor psychological outcomes. These factors should be assessed to enable early intervention for those at risk of poor outcomes. [ABSTRACT FROM AUTHOR]

Context: Identifying modifiable gaps in the symptom management pathway, as perceived by patients, is the first step to relieving patient suffering.Objectives: The objective is to describe the proportion of patients experiencing treatable cancer-related symptoms who reported 1) a health care provider at the treatment center offered assistance for their symptom, 2) they accepted the assistance offered, and 3) the assistance relieved suffering. Variation in symptom management among treatment centers also was examined.Methods: A survey was done with 528 medical oncology outpatients recruited from six treatment centers. Eight items explored management of prevalent, burdensome, and treatable cancer-related symptoms: pain, fatigue, other physical side effects, and emotional distress. Participants were asked about symptom management provided at the clinic from where they were recruited. Questions referred to the last occasion the patient experienced the symptom.Results: Fewer patients were offered help to relieve fatigue (44%) and emotional distress (57%), than pain (90%) and other physical side effects (84%). In most cases, help was not offered as clinic staff were not aware of the patient's symptom. Although the vast majority of patients accepted the help that was offered, more patients accepted help for physical symptoms (pain, 97%; fatigue, 95%; and other side effects, 98%) than emotional symptoms (87%). When care was provided, most patients experienced at least a little relief from pain (99%), fatigue (94%), and emotional distress (96%). Symptom management did not vary significantly by treatment center (P = 0.073).Conclusion: Quality improvement initiatives must focus primarily on improving providers' awareness of their patients' symptoms and ensuring that patients are subsequently offered help. [ABSTRACT FROM AUTHOR]

Objective A patient-centred approach to discussing life expectancy with cancer patients is recommended in Western countries. However, this approach to eliciting and meeting patient preferences can be challenging for clinicians. The aims of this study were the following: (i) to examine cancer patients' preferences for life expectancy disclosure; and (ii) to explore agreement between cancer patients' preferences for, and perceived experiences of, life expectancy disclosure. Methods Cancer patients undergoing radiotherapy treatment in metropolitan Australia completed a cross-sectional touchscreen computer survey including optional questions about their life expectancy disclosure preferences and experiences. Results Of the 208 respondents, 178 (86%) indicated that they would prefer their clinician to ask them before discussing life expectancy, and 30 (14%) indicated that they would prefer others (i.e. clinicians, family) to decide whether they were given life expectancy information. Of the 175 respondents who were classified as having a self- determined or other-determined disclosure experience, 105 (60%) reported an experience of life expectancy disclosure that was in accordance with their preferences. Cohen's κ was −0.04 (95% CI, −0.17, 0.08), indicating very poor agreement between patients' preferences for and perceived experiences of life expectancy disclosure ( p = 0.74). Conclusions In light of patient-centred prognosis disclosure guidelines, our findings of a majority preference for, and experience of, a self-determined approach to life expectancy disclosure amongst radiation oncology patients are encouraging. However, poor agreement between preferences and experiences highlights that additional effort from clinicians is required in order to achieve a truly patient-centred approach to life expectancy disclosure. Copyright © 2013 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objective: The Needs Assessment for Advanced Cancer Patients (NA-ACP) is a 132-item self-report questionnaire designed to assess the seven needs domains of patients with advanced, incurable cancer. This study aimed to evaluate the short derivative form of that questionnaire with advanced lung cancer patients. Methods: Item factor loadings, item test-retest data and response distributions were used to retain or reject items from the original NA-ACP scale. This resulted in 38 items being maintained, preserving the original subscales. The response scale was simplified following feedback from patients. 108 people with advanced lung cancer completed the shortened NA-ALCP along with measures of psychological distress (HADS, DT) and quality of life (EORTC QLQ-C30). A-priori predictions were made for divergent and convergent validity. Results: Internal consistency coefficients were satisfactory for six of seven subscales, range 0.71-0.95. Correlations between NA-ALCP and HADS, DT and EORTC-QLQ-C30 provided support for 11 of the 22 divergent ( r = 0.13-0.27) and convergent predictions ( r = 0.45-0.71). Conclusions: Subscales of the NA-ALCP demonstrated internal reliability consistent with the original scale. Results provided supporting evidence for divergent and convergent validity. This study indicates that the NA-ALCP is psychometrically robust, easily understood and one-quarter the length of the original version. Copyright © 2011 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

In this article, the author reflects on the study that evaluates patients with stage 1 uterine papillary serous carcinoma (UPSC) who were treated with surgery. It contends that inequities in cancer care need to be acknowledged and efforts made to overcome them so that all cancer patients benefit from advances in screening and treatment. It suggests that there is potential for active cancer control initiatives using registries as an access point to benefit patients.

Meeting the psychological, social and physical needs of people with cancer is a challenge for individual health practitioners, health administrators and health policy makers. However, there is a considerable gap between recommended best-evidence psychosocial and supportive care and actual practice. This paper provides a discussion of the reasons for this gap using the precede-proceed model as a theoretical framework. The model is a useful way of classifying potential barriers to the application of recommended best practice into three categories: predisposing factors which influence motivation to behave in a particular way, enabling factors which facilitate the enactment of the behaviour and reinforcing factors which increase the likelihood that the behaviour will be maintained over time. Ways of addressing these barriers are proposed and discussed. Copyright © 2005 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Abstract: Background: This study aimed to: (1) estimate the prevalence of anxiety and/or depression among haematological cancer patients attending treatment centres; and (2) explore the demographic, disease and treatment characteristics associated with anxiety and/or depression. Methods: A cross-sectional study was conducted with outpatients from three haematology clinics in Australia. Patients with a confirmed diagnosis of haematological cancer were approached by a research assistant while waiting for their appointment and invited to participate in the survey. Participants completed the Hospital Anxiety and Depression Scale (HADS) and self-reported demographic, disease and treatment characteristics. Results: Questionnaires from 304 participants were returned. Twenty-seven percent of patients reported anxiety and 17% reported depression. Specifically, 15% reported anxiety without depression, 5% reported depression without anxiety, and 12% reported comorbid anxiety and depression. Participants who had to relocate to receive treatment had almost three times the odds of reporting anxiety and/or depression compared to those who did not have to move. Former smokers also had significantly higher odds of reporting anxiety and/or depression. Limitations: The HADS is likely to have produced some false positives and false negatives when compared with gold standard structured clinical interviews for assessing psychological morbidity. Conclusions: Approximately 20% of haematological cancer patients attending outpatient clinics may experience clinically significant levels of anxiety and/or depression. Providing additional tailored support to patients who have had to relocate for treatment, and to former smokers, may help to reduce anxiety and depression among these subgroups. [Copyright &y& Elsevier]

Abstract: Objective: This study aimed to examine preferred and perceived roles of haematological cancer survivors in treatment decision making. Methods: Participants were within three years of diagnosis and registered with a cancer registry in one Australian state. 732 eligible survivors were invited to complete a paper and pencil survey. Results: 268 survivors completed the survey (37% response rate). The majority of participants (46%) preferred a passive role in decision making. Thirty percent of participants preferred to make the decision in collaboration with the doctor, whereas 26% preferred an active role in decision making. Just over half of respondents (56%) reported an exact match between their preferred and perceived roles. Where discordance between preferred and perceived roles were identified, survivors were more likely to report having been more passively than actively involved compared to their preferred roles. Conclusion: There is considerable variation in haematological cancer survivors’ preferred and perceived roles in treatment decision making. Practice implications: This study highlights the need to improve clinical communication to ensure that patient experiences align with their preferences for involvement in treatment decision making. [Copyright &y& Elsevier]

Abstract: Objective: To conduct a systematic review of literature reporting on the use of volunteers in support programs for people with cancer. Methods: PsycINFO, Medline and CINAHL were used to identify papers published up to April 2007 reporting one-to-one support programs using volunteers. Program data were extracted from the papers, which were rated on research quality and descriptions of the program, volunteers and support recipients. Results: Twenty-eight papers were reviewed. Nineteen (69%) reported peer-support programs, with four (14%) pertaining to the Reach to Recovery program for women with breast cancer, and eight (28%) describing other peer-support programs for women with breast cancer. Few papers described the programs sufficiently to enable a good understanding of support recipients, volunteers, and what transpired between volunteers and support recipients. Twenty papers (71%) were research studies: 10 (36%) with one group descriptive data, 6 (21%) were non-randomized comparative studies and 4 (14%) were randomized controlled trials. Conclusion: While most papers reported that programs were beneficial, few presented data from studies using rigorous research methodologies to support these claims. Practice implications: Using volunteers in cancer care may have merits; however, papers need to provide more information regarding these programs and further evidence is required to determine their effectiveness. [Copyright &y& Elsevier]

Objective To determine the volume and scope of research output examining preparation of patients for people undergoing cancer-related surgical treatment, and the impact of pre-operative education on patient outcomes and health care utilisation. Methods Medline, EMBASE, PsychINFO databases were systematically searched. Eligible papers were coded as data-based or non-data-based. Data-based papers were further classified as descriptive, measurement or intervention studies. Methodological quality and effectiveness of intervention studies were assessed using Cochrane Effective Practice and Organisation of Care (EPOC) criteria. Results We identified 121 eligible papers. The number of publications significantly increased over time. Most were data-based ( n = 99) and descriptive ( n = 83). Fourteen intervention studies met EPOC design criteria. Face-to-face interventions reported benefits for anxiety (5/7), satisfaction (1/1), knowledge (3/3) and health care costs (1/1). Audio-visual and multi-media interventions improved satisfaction (1/1) and knowledge (2/3), but not anxiety (0/3). Written interventions were mixed. Conclusion Descriptive studies dominate the literature examining preoperative education in oncology populations, with few rigorous intervention studies. Pre-operative education can improve satisfaction, knowledge and reduce anxiety. Practice implications Further work should be directed at multi-modal interventions, and those that include the caregiver, given their role in assisting patients to prepare and recover from surgery. [ABSTRACT FROM AUTHOR]