A national study of the unmet needs of support persons of haematological cancer survivors in rural and urban areas of Australia.

PURPOSE: This study aimed to compare support persons of haematological cancer survivors living in rural and urban areas in regard to the type, prevalence and factors associated with reporting unmet needs. METHODS: One thousand and four (792 urban and 193 rural) support persons of adults diagnosed with haematological cancer were recruited from five Australian state population-based cancer registries. Participants completed the Support Person Unmet Needs Survey (SPUNS) that assessed the level of unmet needs experienced over the past month across six domains. RESULTS: Overall, 66% of support persons had at least one 'moderate, high or very high' unmet need and 24% (n = 182) reported having multiple (i.e. 6 or more) 'high/very high' unmet needs in the past month. There were no significant differences between rural and urban support persons in the prevalence of multiple unmet needs or mean total unmet needs scores. There were however significant differences in the types of 'high/very high' unmet needs with support persons living in rural areas more likely to report finance-related unmet needs. Support persons who indicated they had difficulty paying bills had significantly higher odds of reporting multiple 'high/very high' unmet needs. CONCLUSIONS: This is the first large, population-based study to compare the unmet needs of support persons of haematological cancer survivors living in rural and urban areas. Findings confirm previous evidence that supporting a person diagnosed with haematological cancer correlates with a high level of unmet needs and highlight the importance of developing systemic strategies for assisting support persons, especially in regard to making financial assistance and travel subsidies known and readily accessible to those living in rural areas.

The first step in ensuring patient-centred quality of care: ask the patient.

Health providers may not be aware of their patients' needs or preferences, and patients reluctant to raise their concerns. Consequently, the first step in ensuring quality of care is to ask the patient about the care that they would like. A cross-sectional sample of 244 medical oncology outpatients were surveyed about provider-asking behaviours across six dimensions of patient-centred care defined by the Institute of Medicine. Specifically, were patients asked by clinic staff at the treatment centre about their physical and emotional symptoms, information needs to enable decision-making, preferences for involvement in decision-making, involvement of family and friends, and appointment scheduling. Patients were significantly (Cochran's χ2 (9) = 122.541, P < 0.001) less likely to be asked about emotional symptoms (35% infrequently asked), preferences for the involvement of family and friends (25% infrequently asked), and preferences for involvement in medical decision-making (23% infrequently asked). Only a minority of patients were infrequently asked about their treatment-related information needs (8%), physical symptoms (13% pain, 14% fatigue) and preferences for appointment scheduling (13%). Younger age, not Australian born and greater educational qualifications were associated with being infrequently asked. Improvements to care delivery can be made if clinic staff were to more regularly elicit patient's emotional symptoms, and their preferences for the involvement of family/friends and participation in medical decision-making.

Agreement between HADS classifications and single-item screening questions for anxiety and depression: a cross-sectional survey of cancer patients.

BACKGROUND: We assessed agreement between reported anxiety and depression levels of cancer patients using (i) single self-report items and (ii) the Hospital Anxiety and Depression Scale (HADS). We also explored whether anxiety and depression assessment by (i) single self-report items or (ii) the HADS was most strongly associated with a preference to be offered professional assistance. The proportion of patients indicating that they would accept (or were currently using) professional support if they were experiencing anxiety or depression was also examined. PATIENTS AND METHODS: A consecutive sample of cancer patients undergoing radiotherapy at four metropolitan public hospitals in Australia completed a touch screen computer survey. A consecutive subsample of patients attending three of these treatment centres answered additional questions about psychological support preferences. RESULTS: Of 304 respondents, 54% [95% confidence interval (CI) 48% to 60%] perceived that they were currently experiencing mild to severe anxiety and depression. 22% (95% CI 18% to 27%) indicated a preference to be offered professional help. There was moderate agreement between the HADS and single-item responses for categorisation of anxiety and depression. Patient-perceived mild to severe anxiety and depression levels appeared to be the best measure for identifying those with a preference to be offered professional assistance. Of a subsample of 193 respondents, 89% (95% CI 84% to 93%) indicated that if they were experiencing anxiety or depression, they would accept (or were currently using) professional support. CONCLUSIONS: Single-item screening in a cancer care setting may not adequately capture clinical anxiety and depression. However, single-items assessing patients' perceived levels of anxiety and depression are useful indicators of whether patients want to be offered, and are likely to accept, psychosocial care.

Measuring the unmet supportive care needs of cancer support persons: the development of the support person's unmet needs survey--short form.

Few rigorous measures of unmet needs have been developed for cancer support persons. This study describes the development of a short version of the Support Person's Unmet Needs Survey (SPUNS). Cancer survivors [n = 1589, 612 (52%) men, mean age of 62.5 years, SD 11.5] 1-5 years post diagnosis and recruited through three Canadian population-based cancer registries were asked to pass a survey package on to their principal support person. Surveys were returned by 1183 support persons. The survey included the long form of the SPUNS, which contains 78 items. Fifty-two items were deleted using a combination of expert opinion and statistical criteria. Analysis of the remaining items revealed a five-factor structure. The original factors were retained with the exception of a merging of the personal and emotional needs subscales. Cronbach's alpha co-efficients for all subscales were ≥ 0.87, and intraclass correlation of domain scores of the short and long versions of the SPUNS were high. The SPUNS short form was able to discriminate between support persons of survivors who had (n = 147), and those who had not received treatment in the past month (n = 969). At just 26 items, it is likely to have strong clinical and research applicability.

Measuring psychosocial outcomes: is the consumer or the professional the best judge?

In this review, we explore professionally-driven and consumer-driven paradigms in measuring psychosocial outcomes for cancer care. Early measures of psychosocial well-being focussed on clinically-derived concepts of dysfunction. Recent literature reflects a paradigm shift toward a consumer-driven approach to the conceptualisation and measurement of psychosocial well-being. The key distinction between the two approaches rests on whether the professional or consumer retains judgement authority and raises the question of whether it is necessary to include both perspectives in research and practice. Research is proposed to clarify our interpretation of these approaches with a view to devising novel interventions to benefit patient well-being.

Psychological distress in cancer patients undergoing radiation therapy treatment.

PURPOSE: The objective of this study was to examine the likely presence of, and factors associated with, anxiety, depression and overall psychological distress in cancer outpatients undergoing radiation therapy treatment in Sydney, Australia. METHODS: A touchscreen computer survey was conducted in four radiation therapy treatment centre waiting rooms. Patients waiting to receive treatment completed the survey which included questions about demographic and disease characteristics, survey acceptability and the Hospital Anxiety and Depression Scale (HADS). RESULTS: A total of 454 patients (70 %) completed the touchscreen computer survey. The likely presence of anxiety (HADS-A ≥11), depression (HADS-D ≥11) and overall psychological distress (HADS-T ≥15) was 15, 5.7 and 22 %, respectively. Cancer type was found to be associated with each HADS screening category. The majority of patients reported high survey acceptability and willingness to complete similar touchscreen computer surveys in the treatment centre waiting room on additional occasions. CONCLUSIONS: As radiotherapy patients frequently attend the radiation oncology department, routine screening and intervention for elevated levels of psychological distress in this setting appears to be feasible. High survey completion rates and high patient-rated acceptability support this approach to screening. The likely presence of psychological distress is reported for this sample; however, the selection of HADS threshold scores is likely to have influenced the reported rates. Further research is needed to identify how cancer type impacts on likely caseness across the different HADS classifications examined.

Cancer patients' willingness to answer survey questions about life expectancy.

PURPOSE: This study aimed to determine the proportion and characteristics of radiation oncology outpatients who were willing to answer questions about their life expectancy. METHODS: A cross-sectional patient self-report survey was conducted using touch screen computers in Australian radiation oncology treatment centers. The primary outcome was the respondent's willingness to complete a survey subsection about life expectancy. Demographic and disease characteristics were also collected, and level of anxiety and depression was assessed using the Hospital Anxiety and Depression Scale. RESULTS: Of the 469 oncology outpatients who completed the survey, 327 (70 %; 95 % CI, 65 %, 74 %) indicated that they were willing to answer questions about life expectancy. Being female (p < 0.001), older (p < 0.05), born in Asia (p < 0.05), and being diagnosed with cancer types other than breast and prostate cancer (p < 0.01) were associated with lower odds of answering life expectancy questions. CONCLUSIONS: The opportunity to opt-out of survey questions about sensitive issues such as life expectancy is a feasible method for accessing important information about patient preferences while minimizing burden. Further research may be needed to improve acceptability of life expectancy research to some patient groups.

Current state of medical-advice-seeking behaviour for symptoms of colorectal cancer: determinants of failure and delay in medical consultation.

AIM: There are few data on the factors associated with healthcare-seeking behaviour for symptoms of colorectal cancer. This study describes the determinants of failure and delay in seeking medical advice for rectal bleeding and change in bowel habit. METHOD: In total, 1592 persons (56-88 years) were randomly selected from the Hunter Community Study and mailed a questionnaire. RESULTS: In all, 18% (60/332) of respondents experiencing rectal bleeding and 20% (39/195) reporting change in bowel habit had never consulted a doctor. The rate of delay (>1 month) for each symptom was 18% and 37%. The reasons for delay included the assumption that the symptoms were not serious or that they were benign. Triggers for seeking medical advice varied. Healthcare-seeking behaviour for rectal bleeding had not significantly improved compared with a previous community-based study. CONCLUSION: The seriousness of symptoms, importance of early detection and prompt medical consultation must be articulated in health messages to at-risk persons.

Cancer patients' concerns regarding access to cancer care: perceived impact of waiting times along the diagnosis and treatment journey.

Waiting times can raise significant concern for cancer patients. This study examined cancer patients' concern levels at each phase of waiting. Demographic, disease and psychosocial characteristics associated with concern at each phase were also assessed. 146 consenting outpatients (n= 146) were recruited from two hospitals in Sydney, Australia. Each completed a touch-screen computer survey, asking them to recall concern experienced regarding waiting times at each treatment phase. Approximately half (52%) reported experiencing concern during at least one treatment phase, while 8.9% reported experiencing concern at every phase. Higher proportions of patients reported concern about waiting times from: deciding to have radiotherapy to commencement of radiotherapy (31%); the first specialist appointment to receiving a cancer diagnosis (28%); and deciding to have chemotherapy to commencement of chemotherapy (28%). Patient groups more likely to report concern were those of lower socio-economic status, born outside Australia, or of younger age. Although a small proportion of patients reported very high levels of concern regarding waiting times, the experience of some concern was prevalent. Opportunities for reducing this concern are discussed. Vulnerable groups, such as younger and socio-economically disadvantaged patients, should be the focus of efforts to reduce waiting times and patient concern levels.

Do cancer patients' psychosocial outcomes and perceptions of quality of care vary across radiation oncology treatment centres?

This study aimed to explore whether rates of depression, and anxiety and patient views about quality of patient-centred care varied across four metropolitan radiation therapy treatment centres in Sydney, Australia. Participants were radiation therapy outpatients, aged 18 or older and English-speaking. Participants completed a brief survey by touch screen computer while waiting for their radiation therapy treatment appointment. For eight indicators of patient-centred care, participants were asked to indicate whether their well-being would have been improved by better care related to the indicator. Participants also completed the Hospital Anxiety and Depression Scale. No differences between treatment centres were found for rates of anxiety and depression, or for the mean number of domains of care endorsed as needing improvement (indicated by agreeing or strongly agreeing that their well-being would have been improved by better care). The lack of variance in these outcomes may reflect that variation in treatment centre characteristics does not influence psychosocial outcomes and patient views of their care. Alternatively, it may suggest that the characteristics of the four treatment centres which participated in the present study were too similar for differences in patient outcomes to be observed.

Cutting the research pie: a value-weighting approach to explore perceptions about psychosocial research priorities for adults with haematological cancers.

Despite the burden of illness associated with haematological cancers, little research is available about improving psychosocial outcomes for this group. Given scarce research funds, it is important to ensure that resources are used strategically for improving their psychosocial well-being. This study aimed to identify the perceptions of professionals, patients and carers regarding prioritising psychosocial research efforts. First, an expert panel's views on priorities for research were identified. This was followed by a web survey to obtain the perceptions of 117 health professionals, patients and carers. The value-weighting survey used points allocation, allowing respondents to indicate the relative priority of each option. A substantial proportion of resources were allocated to patients who were newly diagnosed or receiving treatment. Less priority was given to other stages of the cancer journey or non-patient populations. There was no indication that any type of psychosocial research was a priority; however, some differences were identified when comparing the priorities of the three respondent groups. To improve psychosocial outcomes for haematological cancer patients, resources should be directed towards patients in the early stages of the cancer journey. There may be a need for research investigating potential interventions to improve psychosocial outcomes for patients with haematological cancers.

The prevalence and characteristics of alcohol-related presentations to emergency departments in rural Australia.

BACKGROUND: The burden of harm associated with alcohol misuse is disproportionately high in rural areas of Australia, and a considerable proportion of this burden is borne by the health system. The health impact of alcohol in rural areas has been measured in terms of the contribution of alcohol to hospital inpatient admissions and mortality rates, despite many more alcohol-related cases presenting to emergency departments (EDs). This study aims to estimate the proportion of presentations to EDs in rural Australia that are alcohol-related and to identify the associated patient and presentation characteristics. METHODS: Patients aged ≥14 years presenting to four EDs in rural NSW were assessed on two measures: (1) Clinician judgement of alcohol consumption, and (2) patient self-report of alcohol consumption in the 6 h preceding the onset of their condition. RESULTS: Preliminary analyses revealed sample selection biases in two of the EDs, and these samples were consequently excluded from further analyses. In the two remaining EDs, 46% of presentations were assessed, of which 9% were identified as alcohol-related. Presentations for mental disorders, those with more urgent triage categories and those occurring on weekends or at night were more often alcohol-related. CONCLUSIONS: The prevalence of alcohol-related ED presentations observed was at the lower end of the documented range, probably due to methodological differences and limitations, as well as geographic variation. Despite this, alcohol-related presentations were associated with a substantial impact on the ED. Policies and programs to reduce the impact of alcohol on rural emergency departments are needed.

Patient or treatment centre? Where are efforts invested to improve cancer patients' psychosocial outcomes?

The psychosocial outcomes of cancer patients may be influenced by individual-level, social and treatment centre predictors. This paper aimed to examine the extent to which individual, social and treatment centre variables have been examined as predictors or targets of intervention for psychosocial outcomes of cancer patients. Medline was searched to find studies in which the psychological outcomes of cancer patient were primary variables. Papers published in English between 1999 and 2009 that reported primary data relevant to psychosocial outcomes for cancer patients were included, with 20% randomly selected for further coding. Descriptive studies were coded for inclusion of individual, social or treatment centre variables. Intervention studies were coded to determine if the unit of intervention was the individual patient, social unit or treatment centre. After random sampling, 412 publications meeting the inclusion criteria were identified, 169 were descriptive and 243 interventions. Of the descriptive papers 95.0% included individual predictors, and 5.0% social predictors. None of the descriptive papers examined treatment centre variables as predictors of psychosocial outcomes. Similarly, none of the interventions evaluated the effectiveness of treatment centre interventions for improving psychosocial outcomes. Potential reasons for the overwhelming dominance of individual predictors and individual-focused interventions in psychosocial literature are discussed.

Multidisciplinary care in cancer: do the current research outputs help?

This review examined whether the increased attention on multidisciplinary care (MDC) in cancer over the last 10 years has been underpinned by an increase in methodologically vigorous intervention research in this field. Electronic search of Medline and CINAHL databases. This review examined whether the proportion of (1) data-based and (2) intervention research meeting Cochrane Effective Practice and Organisation of Care (EPOC) criteria increased between two time periods (1997-2001 and 2002-2006). Papers meeting the following inclusion criteria were identified: relevant to MDC for cancer patients; included the term 'multidisciplinary' in the abstract; published in English; published between 1997 and 2006. The proportion of data-based papers did not increase over time, nor did the proportion of intervention papers using EPOC-accepted designs. Only three intervention studies using EPOC-accepted designs were identified, all in the later time period. MDC is widely advocated in cancer care. This review indicates a pressing need to focus attention on the development of rigorous intervention research. Such research should answer important questions such as which models of MDC are most effective, for which outcomes and for which patients.

The validity and reliability of an interactive computer tobacco and alcohol use survey in general practice.

BACKGROUND: Uncertainty regarding the accuracy of the computer as a data collection or patient screening tool persists. Previous research evaluating the validity of computer health surveys have tended to compare those responses to that of paper survey or clinical interview (as the gold standard). This approach is limited as it assumes that the paper version of the self-report survey is valid and an appropriate gold standard. OBJECTIVES: First, to compare the accuracy of computer and paper methods of assessing self-reported smoking and alcohol use in general practice with biochemical measures as gold standard. Second, to compare the test re-test reliability of computer administration, paper administration and mixed methods of assessing self-reported smoking status and alcohol use in general practice. METHODS: A randomised cross-over design was used. Consenting patients were randomly assigned to one of four groups; Group 1. C-C : completing a computer survey at the time of that consultation (Time 1) and a computer survey 4-7 days later (Time 2); Group 2. C-P: completing a computer survey at Time 1 and a paper survey at Time 2; Group 3. P-C: completing a paper survey at Time 1 and a computer survey at Time 2; and Group 4. P-P: completing a paper survey at Time 1 and 2. At Time 1 all participants also completed biochemical measures to validate self-reported smoking status (expired air carbon monoxide breath test) and alcohol consumption (ethyl alcohol urine assay). RESULTS: Of the 618 who were eligible, 575 (93%) consented to completing the Time 1 surveys. Of these, 71% (N=411) completed Time 2 surveys. Compared to CO, the computer smoking self-report survey demonstrated 91% sensitivity, 94% specificity, 75% positive predictive value (PPV) and 98% negative predictive value (NPV). The equivalent paper survey demonstrated 86% sensitivity, 95% specificity, 80% PPV, and 96% NPV. Compared to urine assay, the computer alcohol use self-report survey demonstrated 92% sensitivity, 50% specificity, 10% PPV and 99% NPV. The equivalent paper survey demonstrated 75% sensitivity, 57% specificity, 6% PPV, and 98% NPV. Level of agreement of smoking self-reports at Time 1 and Time 2 revealed kappa coefficients ranging from 0.95 to 0.98 in each group and hazardous alcohol use self-reports at Time 1 and Time 2 revealed kappa coefficients ranging from 0.90 to 0.96 in each group. CONCLUSION: The collection of self-reported health risk information is equally accurate and reliable using computer interface in the general practice setting as traditional paper survey. Computer survey appears highly reliable and accurate for the measurement of smoking status. Further research is needed to confirm the adequacy of the quantity/frequency measure in detecting those who drink alcohol. Interactive computer administered health surveys offer a number of advantages to researchers and clinicians and further research is warranted.

Quality of life research: is there a difference in output between the major cancer types?

As a result of more people living with or surviving cancer, outputs for quality of life research may have increased over time to reflect the needs of the growing number of people affected by cancer. To determine if this is the case, the authors sought to examine the number and proportion of publications concerned with cancer patients' quality of life for four major cancer sites (breast, lung, prostate, colorectal) over five equal time periods (1985, 1990, 1995, 2000, 2005). A computer-based literature search using Medline and PsycINFO databases was undertaken. A comparison search with cancer-related biomedical terms was conducted. The results showed that the number of quality of life publications was substantially lower compared with biomedical publications over time, although the average annual relative increase in publications was greatest for quality of life. The total number of quality of life publications was greatest for breast cancer and lowest for colorectal cancer at all five time points. The relative increase over time of quality of life publications was greatest for prostate cancer and lowest for breast cancer. More research is needed regarding quality of life for cancer patients. Breast cancer has dominated quality of life research outputs despite a lower relative increase in publications over time compared with other cancer sites. There is need for debate among funding agencies and researchers to ensure research efforts are shared among cancer types.

Quality of life research: types of publication output over time for cancer patients, a systematic review.

To examine the type of published research regarding quality of life for cancer patients over two 24-month periods: 1995-1996 and 2005-2006. A computer-based literature search was conducted using Medline. Two random samples of 120 publications identified in 1995-1996 and in 2005-2006 were coded as data-based research, reviews or programme descriptions. Data-based publications were further coded as measurement, descriptive or intervention research. Intervention publications were coded as psychosocial- or biomedical-based. Psychosocial intervention papers were coded using Cochrane Review criteria. In 1995-1996, 419 publications were identified and 1271 publications in 2005-2006. The majority of publications were data-based. The proportion of types of publications (data-based, reviews or programme description/case report categories) did not change significantly over time. Descriptive research dominated data-based publication outputs in 1995-1996 and 2005-2006. The current approach to quality of life research for cancer patients may be less than optimal for providing successful development of knowledge, improving healthcare delivery and lessening the burden of suffering.

Are we there yet? The state of the evidence base for guidelines on breaking bad news to cancer patients.

The way clinicians break bad news to cancer patients has been retrospectively associated with poor psychosocial outcomes for patients. Education and practice in breaking bad news may be ineffective for improving patients' well-being unless it is informed by a sound evidence base. In the health field, research efforts are expected to advance evidence over time to inform evidence-based practice. Key characteristics of an advancing evidence base are a predominance of new data, and rigorous intervention studies which prospectively demonstrate improved outcomes. This review aimed to examine the progress of the evidence base in breaking bad news to cancer patients. Manual and computer-based searches (Medline and PsycINFO) were performed to identify publications on the topic of breaking bad news to cancer patients published between January 1995 and March 2009. Relevant publications were coded in terms of whether they provided new data, examined psychosocial outcomes for patients or tested intervention strategies and whether intervention studies met criteria for design rigour. Of the 245 relevant publications, 55.5% provided new data and 16.7% were intervention studies. Much of the intervention effort was directed towards improving provider skills rather than patient outcomes (9.8% of studies). Less than 2% of publications were rigorous intervention studies which addressed psychosocial outcomes for patients. Rigorous intervention studies which evaluate strategies for improving psychosocial outcomes in relation to breaking bad news to cancer patients are needed. Current practice and training regarding breaking bad news cannot be regarded as evidence-based until further research is completed.

The needs of patients with advanced, incurable cancer.

BACKGROUND: Limited research has investigated the specific needs of patients with advanced incurable cancer. The aim of this study was to describe the prevalence of perceived needs among this population. METHODS: Medical specialists from two regions in New South Wales, Australia, identified patients with advanced, incurable cancer, who were estimated to have a life expectancy of <2 years and were not receiving formal palliative care. Of the 418 eligible patients, 246 (59%) consented to participate. Consenting patients completed the Needs Assessment for Advanced Cancer Patients questionnaire, which has demonstrable validity and reliability. Patients' perceived needs were assessed across the seven domains of the questionnaire: psychological, daily living, medical communication and information, symptom related, social, spiritual and financial needs. RESULTS: Patients identified the greatest areas of need in relation to psychological and medical communication/information domains. Patients' specific needs were highest in dealing with a lack of energy and tiredness, coping with fears about the cancer spreading, and coping with frustration at not being able to do the things they used to do. CONCLUSION: This study indicates that patients with advanced, incurable cancer have high levels of unmet needs, especially in relation to the areas of psychological and medical communication/information needs. The data have the potential to guide the development of interventions aimed at meeting the current unmet needs of patients with advanced, incurable cancer.

Identifying pregnant women at risk of poor birth outcomes.

Pregnancy is a vulnerable period in women's lives, with a range of maternal and environmental factors impacting upon pregnancy outcome. This study sought to explore the clustering of health risks among pregnant women, and compare the characteristics of women exhibiting clustered risks. A cross-sectional study was undertaken at a large public hospital in Queensland, Australia. Cluster analysis grouped women who had similar levels of risk based on health and lifestyle factors demonstrated to be associated with adverse maternal and infant outcomes. Interviews were conducted with 437 women. The results highlight the interconnectedness of demographic and health risks, and high concentration of risks among Indigenous women. Vulnerable women can be identified and targeted for public health interventions focussing on clustered risk factors, such as alcohol, smoking and sexually transmitted infections. Opportunity exists for screening in routine primary care to identify the individuals who are at risk, rather than identifying specific risks.