Antecedents of domain-specific quality of life after colorectal cancer.

OBJECTIVE: The present study prospectively assessed the influence of medical, socio-demographic, psychological, and lifestyle variables on physical, social/family, emotional, functional well-being and colorectal cancer-specific concerns in a population-based sample of colorectal cancer survivors. METHODS: Participants (n=1822) were assessed at 6 and 24 months post-diagnosis. Predictor variables assessed at 6 months included socio-demographic and medical variables, symptoms/side-effects, body mass index, physical activity, optimism, social support, and cancer threat appraisal. Quality of life (QOL) was assessed at 6 and 24 months post-diagnosis using the Functional Assessment of Cancer Therapy - Colorectal (FACT-C). RESULTS: For each QOL subscale and for the overall FACT-C scale, 6 month scores were the strongest predictor of QOL scores at 24 months post-diagnosis (e.g. beta=0.447, p < 0.001 for overall QOL). Socio-demographic, medical, and psychosocial variables, but not lifestyle variables, differentially predicted domain specific QOL. Only cancer threat appraisal was associated with all five QOL domains. CONCLUSION: Cancer threat appraisal presents as a potentially modifiable variable for interventions seeking to improve QOL. Symptom management and lifestyle strategies to ameliorate the effects of co-morbidities, disease stage and troublesome symptoms such as faecal incontinence on QOL should also be included.

A biopsychosocial perspective on adjustment and quality of life following brain tumor: a systematic evaluation of the literature.

PURPOSE: To systematically evaluate the literature on quality of life and adjustment to brain tumor from a biopsychosocial perspective. METHODS: On the basis of the cancer and brain injury literature, a biopsychosocial organisational framework was initially developed to support an evaluative review of the brain tumor literature. This framework consisted of four themes relating to pre-illness characteristics, neuropathology, personal appraisals and reactions and social support. Electronic searches of Medline, PsycINFO and CINAHL databases identified 48 empirical studies (1980-2007) that investigated factors associated with quality of life or the adjustment of adults with brain tumor. A review of studies within each theme appraised these findings and evaluated the quality of methodology and extent to which biopsychosocial perspectives have guided investigations. RESULTS: Overall, the review identified consistent associations between depression, performance status, fatigue and quality of life. Seven multivariate studies with strong methodology that adopted a biopsychosocial perspective were found. In general, the relationships among pre-illness and brain tumor characteristics, psychosocial variables and quality of life were unclear and various gaps in the literature emerged. CONCLUSIONS: Empirical findings within a biopsychosocial perspective may guide the development and delivery of support services for individuals with brain tumor; however, many important areas exist for future research.

Multiple novel prostate cancer predisposition loci confirmed by an international study: the PRACTICAL Consortium.

A recent genome-wide association study found that genetic variants on chromosomes 3, 6, 7, 10, 11, 19 and X were associated with prostate cancer risk. We evaluated the most significant single-nucleotide polymorphisms (SNP) in these loci using a worldwide consortium of 13 groups (PRACTICAL). Blood DNA from 7,370 prostate cancer cases and 5,742 male controls was analyzed by genotyping assays. Odds ratios (OR) associated with each genotype were estimated using unconditional logistic regression. Six of the seven SNPs showed clear evidence of association with prostate cancer (P = 0.0007-P = 10(-17)). For each of these six SNPs, the estimated per-allele OR was similar to those previously reported and ranged from 1.12 to 1.29. One SNP on 3p12 (rs2660753) showed a weaker association than previously reported [per-allele OR, 1.08 (95% confidence interval, 1.00-1.16; P = 0.06) versus 1.18 (95% confidence interval, 1.06-1.31)]. The combined risks associated with each pair of SNPs were consistent with a multiplicative risk model. Under this model, and in combination with previously reported SNPs on 8q and 17q, these loci explain 16% of the familial risk of the disease, and men in the top 10% of the risk distribution have a 2.1-fold increased risk relative to general population rates. This study provides strong confirmation of these susceptibility loci in multiple populations and shows that they make an important contribution to prostate cancer risk prediction.

Unmet needs of gynaecological cancer survivors: implications for developing community support services.

After treatment completion, gynaecological cancer survivors may face long-term challenges and late effects, specific to this disease. Available research on supportive care needs of women with gynaecological cancer is limited. This study aimed to determine the prevalence and correlates of unmet needs within a population of gynaecological cancer survivors. Eight hundred and two women participated in a population-based mail survey in 2004 (56% response rate). The questionnaire included a validated instrument to assess 45 need items across multiple supportive care domains, and a range of measures to evaluate related correlates consistent with a social-ecological perspective. Forty-three per cent of respondents reported having at least one moderate- or high-level unmet need. The five highest included needing help with fear about the cancer spreading (17%), concerns about the worries of those close to them (15%), uncertainty about the future (14%), lack of energy/tiredness (14%), and not being able to do things they used to do (14%). Subgroups of women with higher odds of reporting 'some' unmet needs across multiple supportive care domains include those who, are not in remission, live with lymphoedema or are unable to work due to illness. Odds were also higher for women who had undergone more recent treatment, and who lived in rural or remote locations. Further assistance with the top specific concerns of gynaecological cancer survivors is recommended. Identified subgroups with higher needs are important targets for support.

Socio-demographic, psychosocial and attitudinal predictors of help seeking after cancer diagnosis.

OBJECTIVE: The objective is to describe cancer patients' patterns of use of psychosocial support services and identify socio-demographic, psychosocial, and attitudinal predictors of service utilization. METHODS: A cross-sectional survey of 439 cancer patients (61.2% response) at a regional tertiary cancer center assessed patterns of support service utilization, cancer-specific distress, social support and constraints, and attitudes to help seeking. RESULTS: Patients less frequently received advice about psychosocial support in comparison with treatment-related information. More than half the respondents were aware of social work support, support groups, and chaplain support; however, most did not utilize these services. For unaware patients, up to 47% would have utilized support services if they had known of their existence. The use of services was significantly related to being female, younger, and having greater cancer-specific distress, more positive and less negative attitudes to help seeking. Future intention to contact a health professional for psychological support was predicted by more positive subjective norms and outcome expectations, higher cancer-specific distress, and less negative attitudes to help seeking. CONCLUSION: Initiatives that encourage distressed patients to use psychosocial care services should highlight positive outcomes. Educational programs for health professionals to support psychosocial care in oncology are needed.

Unmet supportive care needs and interest in services among patients with a brain tumour and their carers.

OBJECTIVES: To assess the supportive care needs and interest in related services among brain tumour patients and their carers and to compare the level of unmet needs to other cancer populations. METHODS: A cross-sectional survey was posted to 363 households who were subscribed to the Queensland Cancer Fund Brain Tumour Support Service in 2005. Overall, 75 patients and 70 carers (response rate 29.8%) returned completed questionnaires. Measures were the Supportive Care Needs Survey (SCNS-34) and a brain tumour specific subscale for patients and carers, as well as the Hospital Anxiety and Depression Scale (HADS). RESULTS: Patients most frequently reported requiring support to overcome fatigue, uncertainty about the future and not being able to do the things they used to do. Carers wanted help dealing with fears about the patients mental or physical deterioration, with the impact caring had on their own life, and with reducing stress in the patient's life. Among patients, 30% reported anxious mood and 17% depressed mood on the HADS, while corresponding numbers for carers were 40% and 10%, respectively. Patients and/or carers with higher than average supportive care needs expressed greater interest in support services, such as those to improve physical activity, using community services more effectively and to manage stress. Greater emotional distress predicted higher supportive care needs (e.g. odds ratio depressed patients=2.11; (95% confidence interval 1.10-4.03), while no association was detected between patients' or carers' demographic characteristics, or patients' self-reported medical status and higher than average supportive care needs. CONCLUSION: The level of unmet supportive care needs observed among patients with a brain tumour and their carers is similar to that observed among cancer populations with metastatic disease. PRACTICE IMPLICATIONS: Interventions for this group should integrate lifestyle, coping support, and neuropsychological rehabilitation.

Stoma surgery for colorectal cancer: a population-based study of patient concerns.

OBJECTIVE: The difficulties and concerns of colorectal cancer patients with an ostomy are not well documented. This study describes the difficulties experienced by colorectal cancer patients with a temporary or permanent ostomy over the 2-year period following their diagnosis. Patients' satisfaction with the information provided to them by their healthcare providers was also assessed. METHODS: Colorectal cancer patients with an ostomy (N 5332) recruited through a cancer registry completed telephone interviews at approximately 5, 12, and 24 months following diagnosis. RESULTS: Painful or irritated peristomal skin and odor and noise from the appliance were the most commonly reported stoma-related difficulties. The proportion of participants reporting these difficulties decreased over time. Provision of preoperative information was comprehensive, and satisfaction with preoperative information was high. However, 34% of patients said they were not seen by an ostomy nurse prior to surgery. CONCLUSIONS: The ostomy nurse may be ideally placed to initiate, develop, and implement survivorship care plans for colorectal cancer patients.

Community knowledge, attitudes and behaviours about environmental tobacco smoke in homes and cars.

OBJECTIVE: to assess knowledge, attitudes and behaviours about environmental tobacco smoke (ETS) in cars and homes in Queensland. METHOD: 1,026 randomly selected Queensland residents (84% response) participated in a computer assisted telephone survey to assess knowledge, attitudes and behaviours about ETS in cars and homes; and attitudes towards restrictions on smoking in a range of contexts. RESULTS: Most respondents are aware of the negative health effects of ETS and have smoking bans in their cars (75.8%) and homes (76.8%), however bans are less prevalent for smokers (cars: 37.9%; homes: 51%; p=0.000). For cars/homes, most smokers who did not have smoking bans would not smoke at all around pregnant women (67.7%/53.7%); fewer would refrain for childrenor=2 years (p=0.000) compared to non-parent smokers. Most respondents support car/ home smoking bans for children

Quality of life among patients with a brain tumor and their carers.

OBJECTIVE: This study assessed the quality of life and psychosocial well-being of brain tumor patients and their carers. METHODS: A cross-sectional postal survey was completed by 75 patients and 70 carers (response rate=29.8%) who were listed in a community-based brain tumor support group database. Measures used were the Functional Assessment of Cancer Therapy-General (FACT-G) and the Hospital Anxiety and Depression Scale (HADS). Queensland population-based norms for the FACT-G were used for comparison. RESULTS: On average, as compared with population norms, the FACT-G summary scores of the patients (mean=74.6, S.D.=18.6) and carers (mean=76.7, S.D.=17.7) were between 0.5 and 1 S.D. lower, representing a clinically significant reduction in their quality of life. Among patients and carers, 30% and 40%, respectively, reported anxious moods and 17% and 10%, respectively, reported depressed moods on the HADS. Significant correlations were observed between the FACT-G and HADS subscales, particularly emotional well-being and anxiety, as well as physical and functional well-being and depression, and between patients' and their carers' quality of life. Among the patients, predictors of lower quality of life were older age and female sex, whereas for the carers, there was a trend for lower quality of life among those looking after a patient with a high-grade disease. CONCLUSIONS: The degree of detriment to quality of life by a brain tumor for patients and that for their carers are similar and clinically significant. The association between the FACT-G subscales and the HADS indicates that improvements could be achieved by alleviating emotional distress and improving functional well-being.

Dispositional optimism as a predictor of men's decision-related distress after localized prostate cancer.

This study investigated prospectively the relationship between optimism, threat appraisal, seeking support and information, cognitive avoidance, physical treatment side effects, and decision-related distress in 111 men with localized prostate cancer. Men were assessed at diagnosis and 2 and 12 months after treatment. Baseline decision-related distress predicted distress 2 and 12 months after treatment. Optimism was a significant prospective and concurrent predictor of decision-related distress, with the effect mediated by proximal cancer threat appraisal. Seeking support and information and cognitive avoidance were not associated with decision-related distress at any time point. For physical treatment side effects, concurrent urinary symptoms were predictive of decision-related distress 2 months after treatment. Results suggest that decision-related distress is generated by similar processes to that of the psychological distress that follows a cancer diagnosis. Screening for men with high decision-related distress for referral to in-depth decision support is suggested. Outcome expectations may present as a therapy target to increase the effectiveness of decisional support that is utility based.

The application of the heuristic-systematic processing model to treatment decision making about prostate cancer.

The study investigated the utility of the Heuristic-Systematic Processing Model as a framework for the investigation of patient decision making. A total of 111 men recently diagnosed with localized prostate cancer were assessed using Verbal Protocol Analysis and self-report measures. Study variables included men's use of nonsystematic and systematic information processing, desire for involvement in decision making, and the individual differences of health locus of control, tolerance of ambiguity, and decision-related uncertainty. Most men (68%) preferred that decision making be shared equally between them and their doctor. Men's use of the expert opinion heuristic was related to men's verbal reports of decisional uncertainty and having a positive orientation to their doctor and medical care; a desire for greater involvement in decision making was predicted by a high internal locus of health control. Trends were observed for systematic information processing to increase when the heuristic strategy used was negatively affect laden and when men were uncertain about the probabilities for cure and side effects. There was a trend for decreased systematic processing when the expert opinion heuristic was used. Findings were consistent with the Heuristic-Systematic Processing Model and suggest that this model has utility for future research in applied decision making about health.

Evaluating patient education materials about radiation therapy.

Targeted treatment education for cancer patients has the potential to promote adjustment through assisting patients to participate in treatment decision making, comply with treatment regimens and cope more effectively with treatment side effects. A quasi-experimental longitudinal pre-test post-test and follow-up design was used to assess the effect of a patient education video about radiation therapy on patients' psychological distress, knowledge about radiation therapy, self-efficacy about coping with treatment and physical symptoms. Patients with head and neck (n=26) and breast cancer (n=66) were recruited into the study and allocated into control and intervention groups. No significant differences were found between the control and intervention groups on any of the outcome variables. However, patients in the intervention group reported high levels of satisfaction with the video and all reported that they would recommend the video to other patients preparing for radiation therapy. As well, 90% of patients in the intervention group reported that some or all of the information in the video was new to them. Education materials that have excellent face validity and that are well received by patients may fail to produce significant change using standard controlled study designs. Future research in this area may need to consider alternative paradigms for evaluating the helpfulness of such materials.

A prospective study of the use of alternative therapies by men with localized prostate cancer.

Although the use of alternative therapies is highly prevalent amongst men with prostate cancer, research about the predictors of such use is limited. The current study aimed to describe prospectively the use of alternative therapies by men diagnosed with localized prostate cancer and identify predictors of alternative therapy use. In all, 111 men newly diagnosed with localized prostate cancer (93% response) were recruited to the study prior to treatment. Men's use of alternative therapies and psychological variables including: psychological distress, orientation to health care, decisional conflict, and health locus of control, were assessed at three time points-(1) before treatment; (2) 2 months after completion of treatment; and (3) 12 months after completion of treatment. Demographic information was also obtained. The percentage of men using alternative therapies was 25, 17 and 14% before treatment, 2 and 12 months after treatment, respectively. In general, the most commonly used therapies were dietary changes, vitamins and herbal and nutrient remedies. Alternative therapy use was not related to final treatment choices. Before treatment, men who used alternative therapies were more uncertain about prostate cancer compared to men who were not using these therapies. Men who were using alternative therapies 12 months after treatment were less psychologically distressed that men who were not using these therapies. Health locus of control and orientation to health care were not found to be related to men's use of alternative therapies. In conclusion, men's use of alternative therapies after localized prostate cancer varied across time in terms of the incidence of use, the types of therapies used, and the psychological correlates of therapy use. Informational support that targets uncertainty about prostate cancer may assist men at diagnosis who are considering alternative therapy use. The potential for alternative therapies to have a supportive function in patient care requires further investigation.

The decision-related psychosocial concerns of men with localised prostate cancer: targets for intervention and research.

PURPOSE: To describe decision-related psychosocial issues relevant for men with clinically localised prostate cancer. METHODS: Searches were conducted across three electronic databases to search the health and psychological literature for articles examining decision-related psychosocial issues for men with localised prostate cancer and their partners. Medline, PsycINFO and CINAHL databases were examined for the period from 1990 to December 2007. RESULTS: Most men with localised prostate cancer want active involvement in decision-making. Difficulty in making the decision is common and decision-related distress may persist over time. Cancer-specific psychological distress (such as fear of recurrence but not overall anxiety) appears to be related to changes in PSA levels; and this distress influences treatment pathways. Decision support interventions are acceptable to men, improve knowledge and might reduce decision and cancer-related distress. However, the quality of intervention studies to date is low. CONCLUSION: Clinicians should seek to involve men and their partners in treatment decision making concurrent with decision and psychological support. There is a need for high quality randomised control trials to identify the optimal approach to decision support for men with clinically localised prostate cancer.

Describing and predicting psychological distress after colorectal cancer.

BACKGROUND: Psychological distress in cancer survivors can be detrimental to treatment adherence and self-care tasks and is associated with poor health behaviors and decreased overall quality of life. The prevalence, course, and predictors of psychological distress after the diagnosis of colorectal cancer are to date not well described. METHODS: A prospective survey of 1822 colorectal cancer patients was undertaken assessing psychological distress and hypothesized predictors including optimism, cancer threat appraisal, social support, and physical activity at 6 and 12 months postdiagnosis. Logistic regression identified correlates of psychological distress at 12 months postdiagnosis. RESULTS: The prevalence of global psychological distress was low: 8.3% and 6.7% at 6 and 12 months postdiagnosis, respectively. When baseline measures of independent variables were included in a logistic regression model, distress at 6 months postdiagnosis (odds ratio [OR]=10.84), comorbidities (OR=1.64), optimism (OR=0.93), cancer threat appraisal (OR=0.92), and social support (OR=0.94) were significantly associated with distress at 12 months postdiagnosis. A second logistic regression model that included concurrent measures of cancer threat appraisal, social support, and physical activity found that distress at 6 months postdiagnosis (OR=12.49), comorbidities (OR=1.64), optimism (OR=0.94), and concurrent cancer threat appraisal (OR=0.85) were significantly associated with distress at 12 months postdiagnosis. CONCLUSIONS: Distress screening at regular intervals is needed to efficiently detect colorectal cancer patients who require in-depth psychological intervention. Threat appraisal is a modifiable variable that should be included in interventions for colorectal cancer survivors. Further research is needed to investigate the potential for physical activity to reduce distress after cancer.

Early decision and psychosocial support intervention for men with localised prostate cancer: an integrated approach.

GOAL: Men diagnosed with prostate cancer experience high decision-related distress concurrent with cancer-related distress. Psycho-education, problem solving and decision support were integrated in a novel telephone-delivered supportive care intervention targeting men at diagnosis and assessed for feasibility. MATERIALS AND METHODS: An exploratory single-group pre-post-test design tracked session frequency, duration and content. Standardised measures assessed decisional conflict, cancer-related distress and decision involvement. Brief screening measures for psychological and decision-related distress were incorporated into the intervention protocol. Twenty men (77% response) newly diagnosed with localised prostate cancer received the intervention. RESULTS: Men who were undecided about treatment at study entry required more pre-treatment intervention calls (p < 0.013). Pre-treatment support calls were longer (M = 40.2 min) and more complex by comparison to post-treatment calls (M = 30.9 min; p < 0.002). Brief screening for decision-related distress correlated with concurrent (p < 0.008) and prospective (p < 0.046) decisional conflict. Decisional conflict and intrusion decreased at post-test (p < 0.001; p < 0.005). Men reported a high level of satisfaction with the support received with benefits identified including anonymity and accessibility. CONCLUSIONS: In this setting, a tele-based supportive care and decision support intervention for men newly diagnosed with prostate cancer was feasible. The use of brief screening measures as within-intervention clinical tools appears promising.

Clinicians' attitudes to prostate cancer peer-support groups.

OBJECTIVE: To assess clinicians' knowledge and attitudes to prostate cancer peer-support groups, essential in improving support services for men with prostate cancer, as patients' perceptions of their clinicians' attitudes to such groups predict patients' positive and negative perceptions of their experiences at such groups. SUBJECTS AND METHODS: In all, 36 clinicians (75% response) across Australia, of whom 27 were urologists and nine were radiation oncologists, were interviewed in-depth using a key-informant approach. Nine clinicians were from regional Australia, with the remaining 27 from major metropolitan settings. Subsequently, 30 clinicians (69% response) completed surveys to confirm identified themes. RESULTS: Peer support was rated positively by most clinicians and most report a fair to good knowledge of such groups. However, less than a quarter regularly refer their patients to these groups. While clinicians can describe positive aspects of peer support, many are concerned that biased viewpoints and misinformation within these groups might potentially contribute to patients' decisional uncertainty and regret. CONCLUSIONS: Further research is needed to establish for whom these support groups are most helpful. Concerns about misleading information that might be proffered in support groups is a barrier to clinician referral to these groups. Dialogue between prostate cancer interest groups and clinicians to resolve concerns presents as a key strategy to improve support for men with prostate cancer.

The tiered model of psychosocial intervention in cancer: a community based approach.

Clinical practice guidelines for the management of psychosocial distress in people with cancer have been produced in Australia and North America and these provide direction for the provision of psychosocial care for patients with cancer and their families. This report describes a tiered intervention model to operationalise psychosocial care in oncology in the community and outlines a framework for integrating services across sectors.

Evaluating peer support for prostate cancer: the Prostate Cancer Peer Support Inventory.

OBJECTIVE: To develop and test a measure for assessing peer support for men attending prostate cancer support groups, and to describe socio-demographic, medical and adjustment characteristics of Australian men who attend these support groups. PATIENTS AND METHODS: In all, 1224 men (51% response) from 44 prostate-cancer support groups across Australia were recruited by mail. Men completed self-report measures that included the Prostate Cancer Peer Support Inventory (PCSI), the UCLA Prostate Cancer Index bother scales, psychological distress, quality of life (QoL), bother from pain and tiredness, perception of the clinician's support for group participation. Group-level variables were also included in the analyses. RESULTS: Peer support was rated positively by most men; a high satisfaction with support groups was related to better QoL, lower pain, younger age, higher perceived clinician support for group participation, use of alternative therapies, lower education, and regular attendance; dissatisfaction with support groups was related to higher psychological distress, lower QoL, and lower perceived clinician support for group participation. Group variables did not predict positive or negative support. Overall QoL was similar to community norms and psychological distress was low, with only 8% of men reporting high distress. The most common physical symptom was sexual bother, with 74% of men reporting moderate or high bother. CONCLUSIONS: The PCSI was a useful measure of peer support. Perception of the benefits of peer support was related to individual but not group differences. The clinicians' attitudes to participation in support groups influenced the men's experience of these groups, and this finding has implications for developing support services for these men.