Dr Allison Boyes

Background: Accurately identifying the unmet needs of community-dwelling people with dementia allows targeted support to be provided to assist these individuals to stay at home. Objective: We developed a self-report instrument to identify the unmet needs of community-dwelling people with dementia and used this to explore the prevalence and type of unmet needs present in this population. Methods: This was a cross-sectional survey of people with dementia living in the community in Australia. Participants were recruited from geriatric clinics, respite centers, aged care providers, and carers attending support groups. Eligible people with dementia were provided with a study information pack and survey which included the self-report Unmet Needs Instrument for Dementia (UNI-D), sociodemographic characteristics and survey acceptability. Results: The UNI-D contained 26 items across 5 domains and demonstrated acceptable internal consistency, face and construct validity, and acceptability. Ninety-five eligible participants completed the survey (response rate 35%) with 85% identifying at least one unmet need (median = 4; IQR = 1-9). The items most frequently endorsed included needing more help with remembering things (64%), finding possible treatments for dementia (44%), understanding who to contact regarding a problem or concern related to dementia (36%), and to see friends and family more often (33%). Conclusion: The UNI-D is a promising tool to identify the self-reported needs of people with dementia. The development and rigorous testing of interventions targeting unmet needs related to health and wellbeing, dementia support, and meaningful activities appears warranted.

Objectives: To examine if baseline stigma predicts psychological distress at 3 and 6 months follow-up among patients newly diagnosed with lung cancer. Methods: This longitudinal study was nested within a larger randomised controlled trial. Eligible participants were recruited via respiratory and oncology out-patient clinics in Australia (n¿=¿194). Consenting participants were asked to complete surveys at baseline, 3 and 6 months post-recruitment. Measures included lung cancer stigma (Cataldo Lung Cancer Stigma Scale) and psychological distress (General Health Questionnaire-12 [GHQ-12]). Results: One-hundred and ninety-four participants were included for analysis. Most were male (57.7%) with a mean age of 68 years (SD¿=¿8.8). A significant relationship between baseline lung cancer stigma and psychological distress at 6 months was found, where a one unit increase in lung cancer stigma increases psychological distress by 0.044 when adjusting for age, gender, smoking status, baseline GHQ-12 scores and intervention allocation (as part of the larger trial; p¿=¿0.001; ß¿=¿0.044, 95% CI¿=¿0.010, 0.079). Conclusion: Temporal links between lung cancer stigma and psychological distress was found at 6 months, suggesting stigma-related experiences may have a delayed impact. Development of routine lung cancer stigma assessments is recommended to identify those at risk of psychological distress.

In this study, a descriptive design was used to explain the supportive care needs of cervical cancer patients in the Northeast of Thailand. The purposive sample was recruited from inpatient and outpatient departments of a university hospital. A total of 144 patients with cervical cancer in stage I-IV or recurrent stage completed the Thai version of the Supportive Care Needs Survey-Short Form 34 (SCNSF-34 Thai version). Descriptive statistics were used to identify the domains and items of the greatest unmet need. Results showed that standardized five domain scores indicated that participant¿s unmet needs were highest in the health system and information domain (x = 2.95, S.D. = 1.15), and lowest in the sexuality domain (x = 1.63, S.D. = 0.94). The five most frequently endorsed items of moderate to high unmet need were all from the health system and information domain as follows: receiving information about things can do to help in recovering from illness (74.3 %), receiving information from documents, charts, or paintings about illness management and side effects that may occur at home (66 %), receiving information about cancer which is under control or in remission (63.2 %), support from at least one health care staff that can discuss illness, treatment, and follow up (63.2 %), receiving written information about the essential aspects of care (59.7 %), and receiving written information about the importance of care (59.7 %). It was clear that a large proportion of cervical cancer patients in Thailand reported unmet supportive care needs. Therefore, nurses should design nursing care services that are consistent with the supportive care needs.

Background: General practitioners¿ (GPs) views about deprescribing prescription opioid analgesics (POAs) may influence the care provided for patients experiencing chronic noncancer pain (CNCP). There are limited data addressing GPs¿ beliefs about deprescribing, including their decisions to deprescribe different types of POAs. Aim: To determine the proportion of GPs who hold attitudes congruent with local pain stewardship, describe their deprescribing decisions, and determine whether type of POA influences deprescribing. Design and setting: In 2016, a cross-sectional survey of all GPs (n=1,570) in one mixed urban and regional primary health network (PHN) in Australia was undertaken. Methods: A mailed self-report questionnaire assessed agreement with local guidelines for treating CNCP; influences on deprescribing POAs and likelihood of deprescribing in a hypothetical case involving either oral codeine or oxycodone. Results: A response rate of 46% was achieved. Approximately half (54%) of GPs agreed POAs should be reserved for people with acute, cancer pain or palliative care and a third (32%) did not agree that a medication focus has limited benefits for peoples¿ long-term quality of life and function. Most (77%) GPs were less likely to deprescribe when effective alternate treatments were lacking, while various patient factors (eg, fear of weaning) were reported to decrease the likelihood of deprescribing for 25% of GPs. A significantly higher proportion of GPs reported being very likely to deprescribe codeine compared to the equivalent opioid dose of oxycodone for a hypothetical patient. Conclusions: Many GPs in the PHN hold attitudes at odds with local guidance that opioids are a nonsuperior treatment for CNCP. Attitudinal barriers to deprescribing include: a lack of consistent approach to deprescribing opioids as a class of drugs, perceived lack of effective treatment alternatives and patient fear of deprescribing. Therefore, the next step in this target population is to appropriately train and support GPs in how to apply the evidence in practice and how to support patients appropriately.

Objective The objective of this study was to explore medical oncology outpatients' perceived experiences of errors in their cancer care. Methods A cross-sectional survey was conducted. English-speaking medical oncology outpatients aged 18 years or older were recruited from 9 Australian cancer treatment centers. Participants completed 2 paper-and-pencil questionnaires: An initial survey on demographic, disease and treatment characteristics upon recruitment; and a second survey on their experiences of errors in cancer care 1 month later. Results A total of 1818 patients (80%) consented to participate, and of these, 1136 (62%) completed both surveys. One hundred forty-eight participants (13%) perceived that an error had been made in their care, of which one third (n = 46) reported that the error was associated with severe harm. Of those who perceived an error had been made, less than half reported that they had received an explanation for the error (n = 65, 45%) and only one third reported receiving an apology (n = 50, 35%) or being told that steps had been taken to prevent the error from reoccurring (n = 52, 36%). Patients with university or vocational level education (odds ratio [OR] = 1.6 [1.09-2.45], P = 0.0174) and those who received radiotherapy (OR = 1.72 [1.16-2.57]; P = 0.0076) or "other" treatments (OR = 3.23 [1.08-9.63]; P = 0.0356) were significantly more likely to report an error in care. Conclusions There is significant scope to improve communication with patients and appropriate responses by the healthcare system after a perceived error in cancer care.

Background: Adequately preparing patients for medical interventions is an important component of quality healthcare. Nevertheless, few instruments for assessing patients' preparation exist. Objectives: To develop a psychometrically rigorous instrument to assess patients' perceptions of the quality of preparation. Methods: An instrument to measure patients' preparation for medical interventions (MiPrep) was developed and tested with patients undergoing medical imaging, radiotherapy, or surgery. Patients were recruited and asked to complete 2 surveys. Survey A assessed patient and intervention characteristics. Survey B (postintervention) contained MiPrep to assess validity (face, content, and construct) and reliability (internal consistency and test-retest). Results: A total of 869 (85%) patients consented to participate and 551 (63%) returned the postintervention survey. Face and content validity were demonstrated. Exploratory factor analysis identified 2 survey modules: receipt and adequacy of information (2 domains) and overall appraisal of patient-centered care (1 domain). Reliability was evidenced by adequate internal consistency (Cronbach a 0.81-0.89) and item-total correlations higher than 0.20. Nevertheless, individual item test-retest reliability requires further confirmation. The final instrument contained 27 items. Conclusions: The MiPrep instrument has evidence of being a valid and reliable instrument of preparation for medical interventions. Healthcare providers can use the instrument as a quality assurance tool to identify areas for improvement and areas of excellence in patients' preparation. Future studies should verify these findings in other populations and examine the divergent and predictive validity of the instrument.

Purpose: To examine the percentage of patients with raised state anxiety levels before undergoing a medical imaging procedure; their attribution of procedural-related anxiety or worry; and sociodemographic, health, and procedural characteristics associated with raised state anxiety levels. Materials and Methods: This prospective cross-sectional study was undertaken in the outpatient medical imaging department at a major public hospital in Australia, with institutional board approval. Adult outpatients undergoing a medical imaging procedure (CT, x-ray, MRI, ultrasound, angiography, or fluoroscopy) completed a preprocedural survey. Anxiety was measured by the short-form state scale of the six-item State-Trait Anxiety Inventory (STAI: Y-6). The number and percentage of participants who reported raised anxiety levels (defined as a STAI: Y-6 score = 33.16) and their attribution of procedural-related anxiety or worry were calculated. Characteristics associated with raised anxiety were examined using multiple logistic regression analysis. Results: Of the 548 (86%) patients who consented to participate, 488 (77%) completed all STAI: Y-6 items. Half of the participants (n = 240; 49%) experienced raised anxiety, and of these, 48% (n = 114) reported feeling most anxious or worried about the possible results. Female gender, imaging modality, medical condition, first time having the procedure, and lower patient-perceived health status were statistically significantly associated with raised anxiety levels. Conclusion: Raised anxiety is common before medical imaging procedures and is mostly attributed to the possible results. Providing increased psychological preparation, particularly to patients with circulatory conditions or neoplasms or those that do not know their medical condition, may help reduce preprocedural anxiety among these subgroups.

Objective: This study explored help-seeking behaviours, group identification, and perceived legitimacy of discrimination, and its potential relationship with perceived lung cancer stigma. Methods: Consecutive consenting adults (n¿=¿274) with a primary diagnosis of lung cancer within the previous 4¿months were recruited at 31 outpatient clinics in Australia. A self-report survey assessed help-seeking, group identification, perceived legitimacy of discrimination, and perceived lung cancer stigma. Results: Services providing assistance from health professionals (69.5%) and informational support (68.5%) were more frequently used than emotional-based support. Only a small proportion (2.6%) of participants were unlikely to seek help from anyone, with the most popular sources of help being the general practitioner (91.0%), and oncologist/treating clinician (81.3%). One-fifth (21.1%) indicated they identified with being a lung cancer patient, and most did not perceive discrimination against lung cancer patients. Higher perceived lung cancer stigma was significantly associated with greater perceived legitimacy of discrimination (P¿<¿0.001), but not help-seeking behaviours or group identification. Conclusions: The relationship between lung cancer stigma and perceived legitimacy of discrimination may guide initiatives to reduce stigma for patients. It is encouraging that perceived stigma did not appear to inhibit help-seeking behaviours. However, further research in this emerging field is needed to investigate patterns of perceived stigma and help-seeking over time to identify how and when to offer support services most appropriate to the needs of lung cancer patients.

Purpose: The majority of research on psychological outcomes for cancer patients has focussed on the role of individual characteristics, and disease and treatment factors. There has been very little exploration of the potential contribution of the treatment clinic to these outcomes. This study explored whether there is variation among clinics in cancer patients¿ psychological outcomes. Methods: Cancer outpatients were recruited from 22 medical oncology and haematology clinics in Australia. Participants completed a pen and paper survey including the Hospital Anxiety and Depression Scale (HADS), as well as sociodemographic, disease and treatment characteristics. Results: Of those eligible to participate, 4233 (82%) consented and 2811 (81% of consenters) returned the completed survey. There was no statistically significant variation in HADS depression scores across clinics. Some difference in anxiety scores derived from the HADS questionnaire between clinics (p = 0.03) was found with the percentage of between-clinic variation estimated to be 1.11%. However, once all demographic, disease and treatment predictors were adjusted for there was no statistical differences between clinics (percent of between-clinic variation = 0.53%; p = 0.1415). Conclusions: Psychological outcomes were not found to vary between clinics. Other sources of variation including patient characteristics may over-ride between-clinic variability, if it exists.

Objective: Responsiveness to information preferences is key to high-quality, patient-centred care. This study examined the top ten preparatory information items not delivered in accordance with medical imaging outpatients¿ preferences, and patient characteristics associated with reporting a greater number of unmet information preferences. Methods: Magnetic resonance imaging and computed tomography outpatients were recruited consecutively in one major public hospital waiting room. Participants self-administered a touchscreen computer questionnaire assessing their sociodemographic and scan characteristics, and unmet preferences for 33 guideline-endorsed preparatory information items. Results: Of 317 eligible patients, 280 (88%) consented to participate. Given equal rankings, the top ten unmet information preferences included 13 items which were endorsed by at least 25% of participants, and commonly related to receiving ¿too little¿ information. One item related to the pre-scan period, seven items to the scan period and five items to the post-scan period. None of the patient characteristics examined were significantly associated with reporting a greater number of unmet information preferences. Conclusion: There is room to improve responsiveness to medical imaging outpatients¿ preparatory information preferences. Improvements should be targeted at individuals, rather than groups defined by sociodemographic or scan characteristics. Practice Implications: A standardised approach to addressing individual patient's information preferences is needed.

OBJECTIVES: To investigate perceived stigma and its possible associations with treatment expectations and preferences in newly diagnosed patients with lung cancer. SAMPLE & SETTING: 274 patients with lung cancer diagnosed in the previous four months at oncology and respiratory outpatient clinics in Australia. METHODS & VARIABLES: Participants completed a self-report survey about perceived lung cancer stigma and treatment expectations and preferences. RESULTS: A mean perceived stigma score of 52 of a possible 124 was reported, which is lower than scores reported in other studies using the same measure; the current study determined that perceived lung cancer stigma was observed less frequently. Significantly higher scores were observed in participants who were younger or who had a history of smoking. Perceived lung cancer stigma was significantly related to treatment expectations. No relationship was found between perceived lung cancer stigma and treatment preferences. IMPLICATIONS FOR NURSING: Healthcare providers are in a key position to provide support and communicate empathetically with patients to minimize potential stigma experiences.

The stigma of non-communicable respiratory diseases (NCRDs), whether perceived or otherwise, can be an important element of a patient's experience of his/her illness and a contributing factor to poor psychosocial, treatment and clinical outcomes. This systematic review examines the evidence regarding the associations between stigma-related experiences and patient outcomes, comparing findings across a range of common NCRDs. Electronic databases and manual searches were conducted to identify original quantitative research published to December 2015. Articles focussing on adult patient samples diagnosed with asthma, chronic obstructive pulmonary disease (COPD), cystic fibrosis, lung cancer or mesothelioma, and included a measurement of stigma-related experience (i.e. perceived stigma, shame, blame or guilt), were eligible for inclusion. Included articles were described for study characteristics, outcome scores, correlates between stigma-related experiences and patient outcomes and methodological rigor. Twenty-five articles were eligible for this review, with most (n = 20) related to lung cancer. No articles for cystic fibrosis were identified. Twenty unique scales were used, with low to moderate stigma-related experiences reported overall. The stigma-related experiences significantly correlated with all six patient-related domains explored (psychosocial, quality of life, behavioral, physical, treatment and work), which were investigated more widely in COPD and lung cancer samples. No studies adequately met all criteria for methodological rigor. The inter-connectedness of stigma-related experiences to other aspects of patient experiences highlight that an integrated approach is needed to address this important issue. Future studies should adopt more rigorous methodology, including streamlining measures, to provide robust evidence.

Purpose: Although the Supportive Care Needs Survey is one of the most comprehensive and robust cancer-specific needs assessment instruments, no version exists specifically for cancer patients in mainland China. This study tested the psychometric properties of the Mandarin version of the 34-item Short-Form Supportive Care Needs Survey (SCNS-SF34-C (Mandarin)) in mainland Chinese cancer patients. Methods: From December 2015 to May 2016, patients were recruited from two cancer centers in Guangzhou, China, to complete the SCNS-SF34-C (Mandarin). Exploratory factor analysis (EFA) was used to test the factor structure. The internal consistency, convergent validity, and discriminant validity of the resulting factor structure were evaluated by traditional psychometric analysis. Results: A total of 861 patients completed the SCNS-SF34-C (Mandarin). Item 14 was removed for its low factor loadings on every factor in the initial EFA. Using the remaining 33 items, the reiterated EFA produced a five-dimension structure that was consistent with the dimensions of the original version of the SCNS-SF34 (health system and information, psychological, patient care and support, physical and daily living, and sexuality), accounting for 69.757% of the total variance. Cronbach¿s alpha coefficients ranged from 0.854 to 0.942 for the five domains and 0.947 for the whole scale. Convergent validity was verified by significant correlations with all corresponding instruments. It discriminated between groups based on age, sex, marital status, and stage of disease. Conclusions: Preliminary evidence suggests that the SCNS-SF34-C (Mandarin) is a reliable and valid instrument for assessing the supportive care needs of cancer patients in mainland China.

Purpose/Objectives: To explore patients' experiences of and preferences for preparation for radiation therapy. Research Approach: Qualitative study. Participants: 26 individuals who recently received radiation therapy for cancer. Setting: One Australian radiation oncology clinic located within a tertiary referral hospital in New South Wales. Methodologic Approach: Semistructured interviews were conducted and analyzed based on a qualitative descriptive approach and content analysis of the transcribed interviews. Findings: Four main themes related to preparation techniques were identified: (a) psychological preparation (frame of mind, downward comparison, coping mechanisms, and reassurance); (b) information preparation (format, content, and knowledge from patients' own or others' experiences); (c) quality of health care; and (d) social support. Two themes related to outcomes of preparation were identified: feeling psychologically prepared and knowing what to expect. Overall, participants' accounts of preparation for radiation therapy revealed that provision of information was satisfactory. Some participants would have liked more information and support primarily in relation to side effects and the practicalities of what would happen during treatment. Conclusions: The information gained in this study indicates what strategies may best prepare patients for radiation therapy. Interpretation: Providing patients with information that creates a realistic expectation of what radiation therapy involves both before and after treatment seems particularly important in helping them feel prepared.

Caregivers of individuals with chronic obstructive pulmonary disease (COPD) experience significant burden. To develop effective interventions to support this vulnerable group, it is necessary to understand how this burden varies as a function of patient well-being and across the illness trajectory. This systematic review aimed to identify the number and type of data-based publications exploring the burden and unmet needs of caregivers of individuals with COPD. Medline, Embase, PsycINFO and Cochrane databases were searched for studies published between January 2000 and February 2014. Studies were eligible if they were quantitative studies examining unmet needs of, or burden on, adult caregivers of individuals with COPD. Eligible papers were categorised according to (i) type (i.e. descriptive, measurement and intervention studies); (ii) whether they measured associations between patient and caregiver burden and (iii) whether they measured caregiver burden longitudinally. Twenty-seven data-based papers met criteria for inclusion. There was a significant increase in the total number of publications over time. The majority of publications were descriptive studies (n¿=¿25), with one measurement and one intervention study identified. Fourteen descriptive studies measured the relationship between patient or caregiver factors and caregiver burden. Only two studies measured caregiver burden over time. There are a number of gaps in the body of research examining burden and unmet needs of caregivers of individuals with COPD that preclude the development of effective interventions for this population. Greater research effort should be directed towards identifying rigorous measurement tools which more accurately characterise caregiver burden, so that evidence-based interventions can be developed.

Purpose: The financial impact of cancer diagnosis and treatment can be considerable to individuals and their households, leading to changes in treatment decision making. This study aimed to quantify effects on income and employment; describe how cost-related factors influence treatment decision making and need for financial assistance; and to identify patient sociodemographic factors associated with treatment decision making, use of financial assistance and financial effects. Methods: A cross-sectional self-report questionnaire was administered to oncology outpatients from two hospitals in Australia: one regional and one metropolitan. Results: Of 255 participants, 67¿% indicated a change in employment and 63¿% of those reported reduced household income since their diagnosis. Travel (15¿%), loss of income (14¿%) and cost of treatments (11¿%) were commonly cited factors influencing treatment decision making. Seventy-four percent of participants reported that they did not access financial assistance, with more than a third (37¿%) of those being unaware that financial assistance was available. Being currently not employed and more recent diagnosis were associated with a reduced income since diagnosis. After adjusting for employment status and age, patients with private health insurance had higher odds of reporting that financial factors had influenced treatment decision making (OR¿=¿2.5). Conclusion: Unemployment is a major driver of the financial impact of cancer. The costs of treatment may be particularly challenging for those with private health insurance who are more likely to be treated in the private health system where out-of-pocket costs are greater. Improved access to financial assistance is required to better avoid potential inequities.

There is increasing interest in the use of brief screening tools to improve detection of depression in the primary care setting. The aim of the present study was to compare the accuracy of the two-item Patient Health Questionnaire (PHQ-2) against the nine-item Patient Health Questionnaire (PHQ-9) for detecting depression among general practice patients. A cross-sectional sample of 3626 adults attending 12 Australian general practices was recruited. Participants completed the PHQ-2 and PHQ-9 via a touchscreen computer. Depression was defined as a PHQ-9 score =10. The area under the curve (AUC), sensitivity, specificity, positive predictive value and negative predictive value were calculated. The PHQ-2 had good overall accuracy relative to the PHQ-9 for discriminating between cases and non-cases of depression, with an AUC of 0.92 (95% confidence interval 0.90-0.93). The PHQ-2 threshold of =3 was the best balance between sensitivity (91%) and specificity (78%) for detecting possible cases of depression. For clinical use, the optimal threshold was =2, with only 2% of possible cases missed.

Purpose: Limited research has examined smoking amongst recent cancer survivors or the relative contribution of factors on smoking behaviour. This study aimed to describe amongst recent Australian cancer survivors (i) prevalence of smoking by cancer type, (ii) characteristics associated with continued smoking following diagnosis, (iii) intention to quit among those who continue to smoke and (iv) characteristics associated with quitting following diagnosis. Method: Cross-sectional data were analysed from 1299 cancer survivors diagnosed with their first primary cancer recruited from two Australian cancer registries in Australia between 2006 and 2008. Results: Of participants, 8.6¿% reported current smoking. Participants who were younger and single or widowed reported higher odds of current smoking. Participants who had a certificate/diploma or tertiary education reported lower odds of smoking. Among current smokers, 53¿% intended to quit in the future. Lung cancer survivors reported more than four times the odds of quitting smoking since diagnosis compared to other cancer types. Conclusion: Of recent Australian cancer survivors, 14¿% report continued smoking. Implications for Cancer Survivors: Smoking following a cancer diagnosis is associated with increased risk of mortality and further morbidity. There is a need to target cessation efforts towards survivors who are younger, without a partner and with a low level of education.

Background The cost of medicines may prove prohibitive for some cancer patients, potentially reducing the ability of a health system to fully deliver best practice care. Objective To identify nonuse or nonpurchase of cancer-related medicines due to cost, and to describe the perceived financial burden of such medicines and associated patient characteristics. Methods A cross-sectional pen- And-paper questionnaire was completed by oncology outpatients at 2 hospitals in Australia; 1 in regional New South Wales and 1 in metropolitan Victoria. Results Almost 1 in 10 study participants had used over- The-counter medicines rather than prescribed medicines for cancer and obtained some but not all of the medicines prescribed in relation to their cancer. 63% of the sample reported some level of financial burden associated with obtaining these medicines, with 34% reporting a moderate or heavy financial burden. 11.8% reported using alternatives to prescribed medicines. People reporting reduced income after being diagnosed with cancer had almost 4 times the odds (OR, 3.73; 95% CI, 1.1-12.1) of reporting a heavy or extreme financial burden associated with prescribed medicines for cancer. Limitations Study response rate, narrow survey population, self-reported survey used. Conclusion This study identifies that a number of cancer patients, especially those with a reduced income after their diagnosis, experience financial burden associated with the purchase of medicines and that some go as far as to not use or to not purchase medicines. It seems likely that limiting the cost of medicines for cancer may improve patient ability to fully participate in the intended treatment. Funding Cancer Council NSW, National Health and Medical Research Council, and Hunter Medical Research Institute, Australia.

Objective 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. Methods A cross-sectional sample of 716 patients attending the outpatient medical oncology department of six public cancer treatment centres across five Australian states participated. Four patient-report survey items explored how often patients were specifically asked by clinical staff at the treatment centre about their (i) emotional distress (anxiety, distress and depression), (ii) pain, (iii) fatigue and (iv) other physical symptoms (e.g. nausea and constipation). Asking at less than half of all appointments was classified as infrequent screening. Results No significant associations were found between treatment centre and symptom screening for emotional distress (p = 0.65), pain (p = 0.21), fatigue (p = 0.95) and other physical symptoms (p = 0.40). The proportion of patients who were regularly screened versus infrequently screened was significantly higher for physical symptoms than emotional symptoms (p < 0.001): 36% infrequently screened for emotional distress (range: 33-45%), 15% infrequently screened for pain (range: 9-21%), 16% infrequently screened for fatigue (range: 15-19%) and 11% infrequently screened for other physical symptoms (range: 5-17%). Conclusions No significant variation in symptom screening was found across treatment centres. While the majority of patients received recommended care, treatment centres must continue to improve symptom screening rates, particularly for emotional distress. However, screening is only the first step and must be accompanied by the offer of help and provision of help to relieve patient suffering.

This systematic review assessed the quantity and quality of research examining the psychosocial outcomes among hematological cancer patients. Studies were categorised as either measurement, descriptive or intervention. Intervention studies were further assessed according to Effective Practice and Organisation of Care (EPOC) methodological criteria. A total of 261 eligible papers were identified. The number of publications increased by 8.8% each year (95% CI = 7.5-10.2%; p < 0.0001). The majority of studies were descriptive (n = 232; 89%), with few measurement (n = 8; 3%) and intervention (n = 21; 8%) studies identified. Ten intervention studies met EPOC design criteria, however only two interventions, one targeted at individuals with Hodgkin's or Non-Hodgkin's lymphoma and one targeted at individuals with leukaemia, lymphoma or myelomatosis were successful in improving patients' psychosocial outcomes. Despite an increasing volume of research examining psychosocial outcomes of hematological cancer patients, there is a need for robust measurement and methodologically rigorous intervention research in this area.

Objective: Preparing patients for medical interventions improves patient outcomes and is an ethical and legal imperative. This review examines the characteristics and psychometric properties of published instruments which assess patients' preparation for medical interventions. Methods: Medline, CINAHL, EMBASE and PsycINFO electronic databases were searched from the date of their inception to November 2015. Data-based publications describing the development or validation of a self-report instrument designed to assess the quality of adult patients' perceived preparation for a medical intervention were included. Results: Nine publications described the development or validation of seven instruments which met inclusion criteria. The psychometric qualities of the instruments varied. None met all of the accepted criteria for psychometric rigour. Although the Satisfaction with Cancer Information Profile met the highest number (n = 5) of the defined psychometric properties, the study sample size was less than 100. Overall, content validity of the included instruments was the most frequently assessed criteria. Conclusion: Few instruments have been specifically developed to assess patients' self-reported preparation for medical interventions. Of the available instruments, none demonstrated adequate rigour across essential psychometric properties. Practice Implications: The need to develop instruments examining patient preparation for medical interventions is apparent given the limitations of the instruments reviewed.

Caregivers of individuals with COPD have a key role in maintaining patient adherence and optimizing patient function. However, no systematic review has examined how the caregiver role has been operationalized in interventions to improve outcomes of individuals with COPD or the quality or effectiveness of these interventions. The aims of this review were to 1) determine whether caregivers have been involved as part of interventions to improve outcomes of individuals with COPD; 2) determine the risk of bias within included intervention studies; and 3) examine the effectiveness of interventions that have involved caregivers in improving outcomes of individuals with COPD. The electronic databases of Medline, Embase, PsycINFO, and Cochrane Library were searched from January 2000 to November 2015. Experimental studies testing interventions that involved a caregiver to improve COPD patient outcomes were eligible. Nine studies involving caregivers met inclusion criteria. No studies reported any intervention components targeted solely at caregivers, with most instead including caregivers in dyadic or group education sessions about COPD delivered by health care professionals. The risk of bias identified in included studies was mixed. Seven of the nine studies were effective in improving a broad range of outcomes. These findings highlight that there is an urgent need for methodologically rigorous interventions to examine the effectiveness of strategies to assist caregivers to provide direct care, encourage adherence to health care provider recommendations, act as a health care advocate, and provide emotional and psychosocial support to individuals with COPD.

Background. Information about the unmet supportive care needs of haematological cancer patients is needed for service planning and to inform clinical practice. This study described the prevalence of, and factors associated with, unmet supportive care needs among haematological cancer patients. Material and methods. A total of 380 adults diagnosed with haematological cancer were recruited from the outpatient department at three comprehensive cancer treatment centres in Australia. Of these, 311 completed a self-report questionnaire. Unmet needs were assessed using the 34-item Supportive Care Needs Survey (SCNS-SF34). The data were examined using descriptive statistics and logistic regression. Results. Overall, 51% (95% CI 45-57%) of participants reported having at least one 'moderate to high' level unmet need, while 25% (95% CI 20-30%) reported 'no need' for help with any items. Unmet needs were most commonly reported in the psychological (35%; 95% CI 30-41%) and physical aspects of daily living (35%; 95% CI 30-41%) domains. The three most frequently endorsed items of 'moderate to high' unmet need were: lack of energy/tiredness (24%; 95% CI 20-30%), not being able to do the things you used to do (21%; 95% CI 17-26%), and uncertainty about the future (21%; 95% CI 16-25%). Patients' sociodemographic characteristics influenced unmet needs more than disease characteristics. Patients who were female, aged less than 55 years or not in the labour force had higher odds of reporting 'moderate to high' level unmet supportive care needs. Conclusion. Unmet supportive care needs are prevalent among haematological cancer patients, particularly in the psychological and physical aspects of daily living domains. These findings provide valuable insight about the range of resources, multidisciplinary linkages and referral pathways needed to address haematological cancer patients' unmet needs.

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.

Background: Physical activity and consuming a healthy diet have clear benefits to the physical and psychosocial health of cancer survivors, with guidelines recognising the importance of these behaviors for cancer survivors. Interventions to promote physical activity and improve dietary behaviors among cancer survivors and carers are needed. The aim of this study was to determine the effects of a group-based, face-to-face multiple health behavior change intervention on behavioral outcomes among cancer survivors of mixed diagnoses and carers. Methods: The Exercise and Nutrition Routine Improving Cancer Health (ENRICH) intervention was evaluated using a two-group pragmatic randomized controlled trial. Cancer survivors and carers (n=174) were randomly allocated to the face-to-face, group-based intervention (six, theory-based two-hour sessions delivered over 8weeks targeting healthy eating and physical activity [PA]) or wait-list control (after completion of 20-week data collection). Assessment of the primary outcome (pedometer-assessed mean daily step counts) and secondary outcomes (diet and alcohol intake [Food Frequency Questionnaire], self-reported PA, weight, body mass index, and waist circumference) were assessed at baseline, 8-and 20-weeks. Results: There was a significant difference between the change over time in the intervention group and the control group. At 20weeks, the intervention group had increased by 478 steps, and the control group had decreased by 1282 steps; this represented an adjusted mean difference of 1761 steps (184 to 3337; P=0.0028). Significant intervention effects for secondary outcomes, included a half serving increase in vegetable intake (difference 39g/day; 95% CI: 12 to 67; P=0.02), weight loss (kg) (difference -1.5kg; 95% CI, -2.6 to -0.3; P=0.014) and change in body mass index (kg/m2) (difference -0.55kg/m2; 95% CI, -0.97 to -0.13; P=0.012). No significant intervention effects were found for self-reported PA, total sitting time, waist circumference, fruit, energy, fibre, alcohol, meat, or fat consumption. Conclusions: The ENRICH intervention was effective for improving PA, weight, body mass index, and vegetable consumption even with the inclusion of multiple cancer types and carers. As an example of successful research translation, the Cancer Council NSW has subsequently adopted ENRICH as a state-wide program. Trial registration: Australian New Zealand Clinical Trials Register identifier: ANZCTRN1260901086257.

Much attention has been given to implementing routine screening programs in cancer care to improve the management of distress following diagnosis. Although patients might screen positive for distress, several studies have found that most then refuse additional psychosocial support. To inform the development of successful models of distress screening, this qualitative study explored preferences for psychosocial care among 18 women diagnosed with a gynecologic cancer who scored at least 4 on the Distress Thermometer (DT). Participants were recruited from a gynecologic oncology outpatient clinic in Newcastle, Australia, and interviewed. Unanimously, participants felt that completing the DT was an integral part of their cancer care. However, half then refused the referral to see a psychologist. These women typically reported that a referral was not needed, because their rating on the DT reflected transient stressors or physical distress. Many also spoke about their need to cope with the challenges they were facing on their own and the extensive social support they already had in place to help them overcome these challenges. In contrast, women who accepted referral to the psychologist often struggled to cope with several losses they felt had existential and long-term effects. Commonly, these women reported not having the social support they needed, managing several concurrent life stressors, and/or not having the repertoire of coping skills they required to "remain afloat." Findings from this study begin to bridge the gap between clinicians' and patients' expectations of how psychosocial services should be used in response to distress screening. © JNCCN - Journal of the National Comprehensive Cancer Network.

Objectives: To determine the: (1) proportion of studies that describe characteristics of helpline service delivery, compared to the proportion that report trials testing efficacy or effectiveness of helplines in changing user outcomes; (2) proportion of efficacy or effectiveness studies that meet EPOC criteria for methodological rigor; and (3) potential benefits of cancer helplines for people affected by cancer based on findings from rigorous efficacy or effectiveness trials. Methods: Electronic databases (Medline, PsycINFO, EMBASE and CINAHL) were searched to identify English-language studies describing original research published from 1991 to 2011. Results: Twenty-eight publications met the review inclusion criteria. From these studies, data on: the characteristics of cancer helpline users; call content; and user satisfaction, were extracted. The potential for helplines to improve the psychosocial outcomes of callers was examined for the three intervention trials. Conclusion: There is a lack of robust evidence regarding the level and types of benefits that cancer helplines may deliver to callers affected by cancer. Given increased emphasis on delivering best-practise supportive care, building the evidence base in this field may assist cancer helplines to increase their service uptake, reach, and benefit to callers. Practise implications: There is a need for more rigorous intervention-focussed studies in this field across a broader range of cancer populations. Future studies should focus on relevant patient-centred outcomes, such as improved knowledge and greater involvement in decision-making, while incorporating process measures to account for intervention fidelity and clinical performance.

BACKGROUND: Overweight and obese patients attempt weight loss when advised to do so by their physicians; however, only a small proportion of these patients report receiving such advice. One reason may be that physicians do not identify their overweight and obese patients. OBJECTIVES: We aimed to determine the extent that Australian general practitioners (GP) recognise overweight or obesity in their patients, and to explore patient and GP characteristics associated with non-detection of overweight and obesity. METHODS: Consenting adult patients (n = 1,111) reported weight, height, demographics and health conditions using a touchscreen computer. GPs (n = 51) completed hard-copy questionnaires indicating whether their patients were overweight or obese. We calculated the sensitivity, specificity, positive predictive value (PPV) and negative predictive value (NPV) for GP detection, using patient self-reported weight and height as the criterion measure for overweight and obesity. For a subsample of patients (n = 107), we did a sensitivity analysis with patient-measured weight and height. We conducted an adjusted, multivariable logistic regression to explore characteristics associated with non-detection, using random effects to adjust for correlation within GPs. RESULTS: Sensitivity for GP assessment was 63 % [95 % CI 57-69 %], specificity 89 % [95 % CI 85-92 %], PPV 87 % [95 % CI 83-90 %] and NPV 69 % [95 % CI 65-72 %]. Sensitivity increased by 3 % and specificity was unchanged in the sensitivity analysis. Men (OR: 1.7 [95 % CI 1.1-2.7]), patients without high blood pressure (OR: 1.8 [95 % CI 1.2-2.8]) and without type 2 diabetes (OR: 2.4 [95 % CI 1.2-8.0]) had higher odds of non-detection. Individuals with obesity (OR: 0.1 [95 % CI 0.07-0.2]) or diploma-level education (OR: 0.3 [95%CI 0.1-0.6]) had lower odds of not being identified. No GP characteristics were associated with non-detection of overweight or obesity. CONCLUSIONS: GPs missed identifying a substantial proportion of overweight and obese patients. Strategies to support GPs in identifying their overweight or obese patients need to be implemented. © 2013 Society of General Internal Medicine.

Background: General practice is a common setting for the provision of weight-management advice, as well as the treatment of depression. While there is some evidence of a reciprocal relationship between obesity and depression, there are limited data about the rates of depression among general practice patients who are underweight, normal weight, overweight, and obese. Aim: To explore the prevalence of depression among underweight, normal weight, overweight, and obese general practice patients. Design and setting: A cross-sectional survey was conducted in 12 Australian general practices. Method: Patients aged =18 years and older who were presenting for general practice care were eligible to participate. Consenting patients completed a touchscreen computer survey assessing self-reported weight and height. Depression was assessed by the Patient Health Questionnaire-9 (PHQ-9), with a score of =10 used to indicate possible depression. Results: Data were obtained from 3361 participants. The prevalence of depression was 24% (95% confidence interval [CI] = 11.86 to 39.28) among underweight participants, 11% (95% CI = 8.5 to 14.0) among normal weight participants, 12% (95% CI = 0.9 to 15.2) among overweight participants, and 23% (95% CI = 17.8 to 29.0) among obese participants. The prevalence of depression was higher for women than for men across all weight categories except underweight. Conclusion: Weight and depression demonstrated a U-shaped relationship, with higher prevalence of depression observed among underweight and obese general practice patients. These conditions may act as red flags for opportunistic screening of depression in the general practice setting. ©British Journal of General Practice.

Background: Several factors need to be considered when selecting a screening tool for depression including accuracy, level of burden for patients and for staff to administer and follow-up. Objective: This study aimed to explore the utility of a single self-assessment item in identifying possible cases of depression in primary care by examining sensitivity and specificity with the nine-item Patient Health Questionnaire (PHQ-9) at different thresholds. Design: Cross-sectional survey presented on a touchscreen computer. Participants. Adult patients attending 12 urban general practices in Australia completed a health status questionnaire (n = 1004). Main measures. Depression was assessed by the PHQ-9 and a single self-assessment item. Sensitivity, specificity, and positive and negative predictive values were calculated for the single item using a PHQ-9 score of 10 or more as the criterion value. Key results. A total of 1004 participants (61% female, 48% aged 55 years or older) completed both the PHQ-9 and a single self-assessment item. When using a threshold of mild depression or greater, the single item had adequate specificity (76%, 95% CI: 71-80%), with 76 out of every 100 people defined as non-depressed by the PHQ-9 also identified as not depressed by the single item. Sensitivity was high (91%, 95% CI: 84-95%), with the single item identifying 91 out of every 100 true cases (as defined by the PHQ-9). Conclusions: The single self-assessment item has high sensitivity and moderate specificity to identify possible cases of depression when used at a threshold of mild depression or greater. © The Author 2014.

Introduction: While there is good evidence of the effectiveness of a variety of interventions and services to prevent and/or relieve distress experienced by people affected by cancer, much of this psychosocial morbidity is undetected and untreated, with consequent exacerbated suffering, decreased satisfaction with care, impaired adherence to treatment regimens and poorer morbidity and mortality outcomes. The objective of this study is to develop, implement and assess the impact, acceptability and cost of an integrated, patient-centred Psychosocial Assessment, Care and Treatment (PACT) model of care for patients with urological and head and neck cancers. Methods and analysis: A time series research design will be used to test the PACT model of care, newly introduced in an Australian tertiary hospital. The primary outcome is system-level impact, assessed through audit of patients' medical records and Medicare claims for follow-up care. The secondary outcomes are impact of the model on patients' experience and healthcare professionals' (HCPs) knowledge and confidence, assessed via patient and HCP surveys at baseline and at followup. Acceptability of the intervention will be assessed through HCP interviews at follow-up, and cost will be assessed from Medicare and Pharmaceutical Benefits Scheme claims information and information logged pertaining to intervention activities (eg, time spent by the newly appointed psycho-oncology staff in direct patient contact, providing training sessions, engaging in case review) and their associated costs (eg, salaries, training materials and videoconferencing). Ethics and dissemination: Ethics approval was obtained from the Human Research Ethics Committees of Hunter New England Local Health District and the University of NSW. Results: The results will be widely disseminated to the funding body and through peer-reviewed publications, HCP and consumer publications, oncology conferences and meetings.

Background: There is increasing recognition of gaps between best scientific evidence and clinical practice. This systematic review aimed to assess the volume and scope of peer-reviewed cancer research output in the years 2000, 2005, and 2010.Methods: Eligible papers were published in English and reported on evidence-practice gaps in cancer care. The electronic database Medline was searched for three time periods using MeSH headings and keywords. Abstracts were assessed against eligibility criteria by one reviewer and checked by a second. Papers meeting eligibility criteria were coded as data-based or non-data-based, and by cancer type of focus. All data-based papers were then further classified as descriptive studies documenting the extent of, or barriers to addressing, the evidence-practice gap; or intervention studies examining the effectiveness of strategies to reduce the evidence-practice gap.Results: A total of 176 eligible papers were identified. The number of publications significantly increased over time, from 25 in 2000 to 100 in 2010 (p < 0.001). Of the 176 identified papers, 160 were data-based. The majority of these (n = 150) reported descriptive studies. Only 10 studies examined the effectiveness of interventions designed to reduce discrepancies between evidence and clinical practice. Of these, only one was a randomized controlled trial. Of all data-based studies, almost one-third (n = 48) examined breast cancer care.Conclusions: While the number of publications investigating evidence-practice gaps in cancer care increased over a ten-year period, most studies continued to describe gaps between best evidence and clinical practice, rather than rigorously testing interventions to reduce the gap. © 2014 Bryant et al.; licensee BioMed Central Ltd.