The supportive care needs survey short form 34 (SCNS-SF34): translation and cultural adaptation into the Nepali language among patients with cervical cancer in Nepal.

BACKGROUND: A questionnaire developed in one language must be translated and adapted when it will be used with patients speaking a different language and care should be taken to maintain equivalence between the source language (SL) version and its translated version. The objective of this study was to test the linguistic and cultural validity of a Nepali language version of the Supportive Care Need Survey - Short Form 34 (SCNS-SF34) used with the Nepali population. METHODS: Translation of the SCNS-SF34 was carried out by following Beaton's guidelines and Consensus-based Standards for the Selection of Health Status Measurement Instruments (COSMIN) by a research team. The translated version was administered to patients with cervical cancer in Nepal. The following steps were performed as part of the study: translation, content validity assessment, reliability assessment and measurement of errors. RESULTS: The study reports item content validity (I-CVI) was > 0.78 and scale content validity (S-CVI) was - 0.89, 0.91 and 0.90 respectively in semantic, cultural, and conceptual aspects. The study found a content validity ratio (CVR) of 0.9 to 1, Cronbach's α of 0.90, correlation significant at the 0.01 level (2-tailed), and clarity of the questionnaire at 91.29%. The standard error of measurement (SEM) and small detectable changes (SDC) for overall care need scores were measured 2.70 and 7.47 respectively. All items were accepted as per the original SCNS-SF34. Following the respondents' suggestions, simpler Nepali words were chosen in some items to replace the words in the preliminary Nepali version of SCNS-SF34. CONCLUSION: Preliminary findings show that the Nepali translation of SCNS-SF34 is practical and applicable to the Nepali population. Financial supportive care needs, supportive care for caretakers and problems during patient hospital stays are essential to include in the questionnaire to further explore supportive care needs.

Prevalence and correlates of modifiable risk factors for cervical cancer and HPV infection among senior high school students in Ghana: a latent class analysis.

BACKGROUND: While health risk behaviours are likely to co-occur, there is dearth of studies exploring the clustering of cervical cancer and HPV infection risk factors among adolescents. This study aimed to determine: 1) the prevalence of modifiable risk factors for cervical cancer and HPV infection, 2) the clustering of modifiable risk factors for cervical cancer and HPV infection, and 3) factors associated with the identified clusters. METHODS: Female students (aged 16-24 years, N = 2400) recruited from 17 randomly selected senior high schools in the Ashanti Region, Ghana completed a questionnaire assessing modifiable risk factors for cervical cancer and HPV infection including sexual experience, early sexual intercourse (< 18 years), unprotected sex, smoking, sexually transmitted infections (STIs); multiple sexual partners (MSP) and smoking. Latent class analysis explored separate classes of students according to their risk factor profiles for cervical cancer and HPV infection. Latent class regression analysis explored factors associated with latent class memberships. RESULTS: Approximately one in three students (34%, 95%CI: 32%-36%) reported exposure to at least one risk factor. Two separate classes emerged: high-risk and low-risk (cervical cancer: 24% and 76% of students, respectively; HPV infection: 26% and 74% of students, respectively). Compared to participants in the low-risk classes i) the cervical cancer high-risk class were more likely to report exposure to oral contraceptives; early sexual intercourse (< 18 years); STIs; MSP and smoking; and ii) the HPV infection high risk class were more likely to report exposure to sexual intercourse; unprotected sex and MSP. Participants with higher risk factor knowledge had significantly higher odds of belonging to cervical cancer and HPV infection high-risk classes. Participants with greater perceived susceptibility to cervical cancer and HPV infection were more likely to belong to the high-risk HPV infection class. Sociodemographic characteristics and greater perceived seriousness about cervical cancer and HPV infection had significantly lower odds of belonging to both high-risk classes. CONCLUSIONS: The co-occurrence of cervical cancer and HPV infection risk factors suggests that a single school-based multi-component risk reduction intervention could concurrently target multiple risk behaviours. However, students in the high risk class may benefit from more complex risk reduction interventions.

The health and wellbeing of Australian social housing tenants compared to people living in other types of housing.

BACKGROUND: Although social housing provides access to safe and affordable housing, recent studies have found that social housing tenants consistently have lower levels of health and well-being compared to other people. Given this, there is a need to examine multimorbidity for social housing tenants. METHODS: Secondary data analysis of the 2017-18 Australian National Health Survey (n = 14,327) compared the health of adults residing in social housing compared to people in other housing types (private rentals, homeowners, and homeowners/mortgagees). RESULTS: Most health factors examined were more prevalent in social housing tenants compared to those living in other housing types. Individual health problems identified as more highly prevalent in social housing tenants compared to all other housing types included mental health issues (43%), arthritis (36%), back problems (32%), hypertension (25%), asthma (22%) and COPD (11%). 24% of social housing tenants reported five or more health factors compared to 3-6% of people in other housing types. CONCLUSIONS: Although these findings are not unexpected, they provide more detailed evidence that social housing providers and policy makers should consider when planning future initiatives.

Prevalence and type of unmet needs experienced by carers of people living with dementia.

OBJECTIVES: Carers of people with dementia experience significant physical, emotional, and social burdens. Needs assessment can provide important information to assist services in providing support to carers to reduce these burdens. However, few studies have examined the prevalence of unmet needs experienced by carers of people with dementia using a quantitative instrument. This study aimed to examine the prevalence and type of unmet needs experienced by carers of people with dementia in Australia. METHODS: This was a cross-sectional survey of carers providing support to community-dwelling individuals living with dementia. Carers were recruited through geriatric clinics, aged care providers, support services and community organisations. Consenting carers completed a survey including an 80-item study-specific unmet needs instrument for carers (UNI-C) and sociodemographic characteristics. Descriptive statistics were used to identify the most prevalent unmet needs reported by carers. RESULTS: A total of 169 carers (response rate 47%) completed the survey. Most (87%) carers reported at least one unmet need. Carers reported a median of 16.0 (IQR = 24.0; max = 58) out of a possible 80 unmet needs. The most frequently endorsed unmet needs spanned a range of areas including emotional wellbeing, accessing health and aged care services, managing apathy, and finding information. CONCLUSION: This study highlighted that a large proportion of carers experience unmet needs associated with caring for someone with dementia. Developing and rigorously testing interventions to meet carers' commonly reported unmet needs are warranted.Supplemental data for this article is available online at https://doi.org/10.1080/13607863.2022.2053833 .

Preference For Cervical Cancer Education: A Multisite Cross-Sectional Survey of Female Senior High School Students in Ghana.

Cervical cancer incidence continues to rise in Ghana. To enhance knowledge and prevention of cervical cancer among young people in Ghana, there is a need to better understand their education preferences. The study aimed to describe female senior school students' preferences for receiving cervical cancer education. A cross-sectional survey of students from 17 schools in the Ashanti Region of Ghana assessed the strength of preference for receiving cervical cancer education from a range of sources, settings and delivery mediums. Of the 2400 participants (aged 16-24 years), the majority endorsed doctors (87%, 95%CI: 85-88%), nurses (80%, 95%CI: 78-82%) and credible health organisations (78%, 95%CI%: 76-79%) as their preferred source of education, and hospitals 83% (95%CI: 81-84%) as the preferred setting. Nearly all students (92%) endorsed at least three cervical cancer education delivery mediums, with at least three quarters endorsing television (78%, 95%CI: 77-80%), one-on-one health consultation in-person or online (77%, 95%CI: 75-79%; 75%, 95%CI: 73-77%), and health information websites (75%, 95%CI: 73-77%). Findings suggest that cervical cancer education efforts among female senior school students in Ghana should consider the use of a range of more resource-intensive individualised approaches to low-cost anonymous, generic approaches from credible sources and institutions.

Depression and thoughts of self-harm and suicide among people living with dementia: results of a cross-sectional survey.

BACKGROUND: Depression is common among people with dementia. Despite most people with dementia living in the community, there have been few investigations of self-reported depressive symptoms and suicidal ideation among community-dwelling people with dementia in Australia. This study aimed to explore the proportion of people with mild, moderate and severe levels of depressive symptoms, and suicidal ideation among a sample of people living with dementia in Australia. Correlates of reporting depressive symptoms were also explored. METHODS: Adults diagnosed with dementia by a medical professional who were English speaking and community-dwelling were asked to complete a paper and pencil survey. Those who were unable to provide independent consent were excluded. Depression was assessed using the Geriatric Depression Scale -15, and suicidal ideation was assessed using two study-specific items. Multivariable analyses examined quality of life, unmet needs and sociodemographic factors associated with having a score of five or more on the Geriatric Depression Scale-15. RESULTS: Ninety-four people participated in the study. Thirty-seven percent (n = 35) reported some level of depressive symptoms, with most of these (21%, n = 20) classified as having mild depressive symptoms. Five participants (5%) reported they had had thoughts of being better off dead or hurting themselves, while three (3%) reported having had a plan to end their life. For each additional unmet need, the odds of being depressed increased by 25%(P < 0.001). For each point increase in quality of life, the odds of being depressed decreased by 48% (P < 0.001). CONCLUSIONS: The high proportion of people with dementia who report depressive symptoms suggests the need to routinely assess depressive symptoms among this group. There may also be benefits in assessing unmet needs and addressing these where possible as part of an approach to reducing depression among people living with dementia in the community.

Improving knowledge, attitudes, and uptake of cervical cancer prevention among female students: A systematic review and meta-analysis of school-based health education.

OBJECTIVE: Schools are an ideal environment for promoting cervical cancer prevention among young women. This systematic review and meta-analysis aimed to examine: 1) the effectiveness of school-based education for improving i) knowledge and perceptions of cervical cancer, HPV infection and vaccination, and cervical cancer screening; ii) attitudes and intentions toward, and uptake of HPV vaccination and cervical cancer screening among female students; and 2) the methodological quality of studies testing school-based cervical cancer education. METHODS: Medline, EMBASE, CENTRAL, PsycINFO, CINAHL, Web of Science, and ERIC literature databases were searched from inception to November 2020. English language publications describing RCTs of any form of cervical cancer education delivered to female students in a school setting were eligible for inclusion. Included studies were assessed for methodological quality using the revised Cochrane risk of bias tool for randomized trials and the GRADE approach. Standardized Mean Differences and Odds Ratios were calculated and meta-analytically pooled using random-effects models. Subgroup analysis explored heterogeneity. RESULTS: Of the 13 included studies, only one study was judged overall as having a low risk of bias. School-based education improved knowledge about cervical cancer and HPV infection. It also improved knowledge of and intentions toward HPV vaccination. Although education was ineffective in improving cervical cancer and HPV infection risk perceptions, and attitudes about HPV vaccination, a subgroup analysis found printed education materials focused on HPV-related content may have significant positive effects on risk perceptions. School-based education did not significantly increase HPV vaccination uptake; however, a face-to-face active approach seemed beneficial in a subgroup analysis. Heterogeneity (I2) ranged between 0% to 93%, and the quality of evidence was rated from low to moderate. CONCLUSIONS: High-quality evidence from methodologically rigorous studies is needed to provide stronger guidance regarding the benefits of school-based education in improving knowledge and behaviours toward cervical cancer prevention.

Lung cancer stigma is a predictor for psychological distress: A longitudinal study. Lung cancer stigma is a predictor for psychological distress.

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.

Unmet Needs Among Breast Cancer Patients in a Developing Country and Supportive Care Needs Survey Validation.

BACKGROUND: Identifying and addressing breast cancer (BC) patients' unmet needs (UN) are crucial due to their possible contribution to higher levels of morbidity, particularly in vulnerable underserved populations, such as Latinas with BC. OBJECTIVE: This study aimed to (1) identify and describe the most frequently reported items of moderate-high UN among Mexican women with BC covered by public healthcare insurance; (2) analyze the differences in UN domains according to participants' sociodemographic and clinical characteristics; and (3) validate the Supportive Care Needs Survey-Short Form-34 (SCNS-SF34). METHODS: A cross-sectional study was conducted with 396 consecutive BC patients. A linguistically translated and culturally adapted version of the SCNS-SF34 for Mexican women with BC was completed by the participants. RESULTS: The validation yielded a 32-item version of the SCNS with adequate psychometric properties. The Health System and Providers Information was the highest UN domain, followed by the psychological domain. "Fears about cancer spreading" (37.4%) and "Concerns about the worries of those close to you" (37.3%) were the most prevalent moderate-high UN. Sexuality was the only domain associated with clinical and sociodemographic characteristics. CONCLUSION: By defining the most urgent needs of this group of patients, our results will enable the development of targeted support services and patient-centered care.

Second opinions in medical oncology.

BACKGROUND: The current study aimed to further our understanding of second opinions among medical oncology patients by examining the proportion of patients who sought a second opinion about their cancer treatment, and why. METHODS: The study was conducted between 2013 and 2015 in three medical oncology clinics located in public hospitals in Australia: in metropolitan New South Wales, metropolitan Queensland, and in Tasmania. Those patients who provide written informed consent were asked to complete a brief paper and pencil survey in the clinic containing questions on sociodemographic, disease and treatment characteristics. Approximately 1 month later, participants were mailed a second paper and pencil survey which contained questions about whether they had sought a second opinion and their motivation for doing so. Non-responders were followed up by letter at 3 and 6 weeks. RESULTS: Of 823 patients screened for eligibility, 698 eligible patients, 612 provided consent. Of those who consented, 355 completed both the initial survey and the second survey and were included in the analyses. Of the 57 patients who sought a second opinion, the most frequent reasons given for doing so were the need for reassurance (49.1%) and the need to consider the range of treatment options (41.8%). Of the 297 (83.6%) participants who did not seek a second opinion, the main reason was confidence in the first doctor (88.7%). Only 3.1% patients did not know that they could ask for a second opinion. Occasionally the doctor will initiate the referral for a second opinion. CONCLUSIONS: Our study suggests that a minority of cancer patients seek a second opinion at some phase during their care. Most did so for reassurance or to ensure that they had covered all of the treatment options and not because of discomfort or distrust of their treating doctor. Few patients reported a lack of awareness of second opinions. This suggests that second opinions form part of a patient-centred approach to information provision about care options. Whether the second opinion improves the quality of care or indeed outcomes has been difficult to demonstrate.

Development and Validation of the MiPrep Survey: An Instrument Assessing Patients' Perceived Preparation for Medical Interventions Including Medical Imaging, Radiotherapy, and Surgery.

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 α 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.

Electronic Health Literacy Among Magnetic Resonance Imaging and Computed Tomography Medical Imaging Outpatients: Cluster Analysis.

BACKGROUND: Variations in an individual's electronic health (eHealth) literacy may influence the degree to which health consumers can benefit from eHealth. The eHealth Literacy Scale (eHEALS) is a common measure of eHealth literacy. However, the lack of guidelines for the standardized interpretation of eHEALS scores limits its research and clinical utility. Cut points are often arbitrarily applied at the eHEALS item or global level, which assumes a dichotomy of high and low eHealth literacy. This approach disregards scale constructs and results in inaccurate and inconsistent conclusions. Cluster analysis is an exploratory technique, which can be used to overcome these issues, by identifying classes of patients reporting similar eHealth literacy without imposing data cut points. OBJECTIVE: The aim of this cross-sectional study was to identify classes of patients reporting similar eHealth literacy and assess characteristics associated with class membership. METHODS: Medical imaging outpatients were recruited consecutively in the waiting room of one major public hospital in New South Wales, Australia. Participants completed a self-report questionnaire assessing their sociodemographic characteristics and eHealth literacy, using the eHEALS. Latent class analysis was used to explore eHealth literacy clusters identified by a distance-based cluster analysis, and to identify characteristics associated with class membership. RESULTS: Of the 268 eligible and consenting participants, 256 (95.5%) completed the eHEALS. Consistent with distance-based findings, 4 latent classes were identified, which were labeled as low (21.1%, 54/256), moderate (26.2%, 67/256), high (32.8%, 84/256), and very high (19.9%, 51/256) eHealth literacy. Compared with the low class, participants who preferred to receive a lot of health information reported significantly higher odds of moderate eHealth literacy (odds ratio 16.67, 95% CI 1.67-100.00; P=.02), and those who used the internet at least daily reported significantly higher odds of high eHealth literacy (odds ratio 4.76, 95% CI 1.59-14.29; P=.007). CONCLUSIONS: The identification of multiple classes of eHealth literacy, using both distance-based and latent class analyses, highlights the limitations of using the eHEALS global score as a dichotomous measurement tool. The findings suggest that eHealth literacy support needs vary in this population. The identification of low and moderate eHealth literacy classes indicate that the design of eHealth resources should be tailored to patients' varying levels of eHealth literacy. eHealth literacy improvement interventions are needed, and these should be targeted based on individuals' internet use frequency and health information amount preferences.

Preferences for models of peer support in the digital era: A cross-sectional survey of people with cancer.

OBJECTIVE: Many people with cancer report an unmet need for peer support, yet participation rates are low. This study examined cancer patients' preferences for participating in peer support, and the characteristics associated with having or wanting to participate in peer support. METHODS: Adult cancer patients were recruited from outpatient oncology clinics at 5 hospitals in Australia. Participants were invited to self-complete 2 questionnaires: one at recruitment assessing their demographic and cancer characteristics, and another 4 weeks later assessing their preferences for participating in cancer-related peer support. RESULTS: The peer support questionnaire was completed by 177/273 (65%) of participants. Most (59%, n = 104) had or wanted to participate in peer support. More than half reported that it was important the people they connected with had the same cancer treatment (56%, n = 99) or type of cancer (53%, n = 94) as themselves. Half had or wanted to participate in 1-to-1 peer support (52%, n = 92). Half had or wanted to connect with peers face-to-face (53%, n = 93). Only 13% (n = 23) were receptive to connecting with peers over the internet. Being aged ≤65 years was significantly associated (OR = 2.3; 95% CI: 1.1-5.1) with reporting a preference for participating in peer support. CONCLUSIONS: Cancer patients are interested in participating in peer support, particularly those who are younger. Despite the digital era, traditional forms of peer support continue to be important in supporting people with cancer. Greater understanding of the barriers to cancer patients' involvement in potentially low cost and high reach web-based models of peer support is required.

Help-seeking behaviour in newly diagnosed lung cancer patients: Assessing the role of perceived stigma.

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.

The timeliness of patients reporting the side effects of chemotherapy.

PURPOSE: To explore the actions cancer patients reported they would take in response to a range of common side effects of chemotherapy and whether these were considered appropriate based on current guidelines and evidence; and to explore the sociodemographic and cancer-related variables associated with patients selecting the appropriate action (immediate medical attention or reporting) for two potentially life-threatening side effects: fever, and unusual bleeding and bruising. METHODS: Four hundred thirty-six medical oncology and haematology patients receiving chemotherapy completed two surveys to provide demographic, disease and treatment characteristics, and details on how they would respond if they experienced a range of specified side effects of chemotherapy (for example, nausea and vomiting, fatigue, and skin rash or nail changes). The proportion of patients reporting the appropriate action for each side effect was calculated. Multiple logistic regressions examined the patient demographic and cancer characteristics associated with selecting the appropriate action (seeking immediate medical attention) for two potentially life-threatening side effects of chemotherapy: high fever of 38 °C or more, and unusual bleeding or bruising. RESULTS: Two thirds of patients indicated that they would seek immediate medical attention for high fever (67%), but only 41% would seek immediate attention for bleeding or bruising. Cancer type and time since diagnosis were significantly associated with patients indicating that they would seek immediate medical attention for high fever; while time since diagnosis was the only variable significantly associated with patients reporting that they would seek immediate medical attention for unusual bleeding or bruising. For chronic side effects, like skin rash or nail changes, and tingling or numbness, which usually do not require urgent reporting, only between 12 and 16% would report them immediately. A significant proportion of patients reported that they would "do nothing" about fatigue or tiredness (24%). By comparison, less than 10% patients reported that they would do nothing for the other side effects investigated. CONCLUSIONS: Tools need to be created so that patients better understand the side effects after being treated with chemotherapy and what action they should take.

Examining variation across treatment clinics in cancer patients' psychological outcomes: results of a cross sectional survey.

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.

Access to clinical trials among oncology patients: results of a cross sectional survey.

BACKGROUND: Clinical trials are necessary for the advancement of cancer treatment and care, however low rates of participation in such trials limit the generalisability of findings. The objective of this study was to examine the proportion of medical oncology outpatients in Australia who are invited and consent to participate in clinical trials and the factors associated with this. METHODS: A sample of adult medical oncology patients was recruited from three Australian cancer treatment centres. Consenting patients completed two paper-and-pencil surveys; one at the time of consent and another approximately 1 month later. A multivariate logistic regression was conducted to explore factors associated with invitation and participation in a trial. RESULTS: Thirty-eight percent (n = 146) of the 383 participants reported they had been invited to take part in a clinical trial. Of those invited, 93% reported consenting to participate in the trial, with the majority indicating that they did not regret their decision (89%). Treatment centre and time since diagnosis were significantly associated with being invited to take part in a clinical trial. None of the factors examined were associated with clinical trial consent rates. CONCLUSIONS: The main barrier to clinical trial participation is not being invited to do so, with the centre the patient attends being a modifiable determinant of whether or not they are invited. Increasing the resources available to treatment centres to ensure all patients are offered participation in trials they are eligible for may help to improve rates of trial participation.

Quantifying the unmet needs of caregivers of people with dementia: a critical review of the quality of measures.

OBJECTIVE: The array of demanding tasks carried out by caregivers of people with dementia have significant negative impacts on their physical, mental and social well-being. Needs assessment allows individuals to indicate the extent to which their needs across different areas have or have not been met, allowing for estimations of the prevalence of needs and the extent to which help is required. This approach is extremely valuable in a clinical context, as it enables identification of the areas with which caregivers report a particular desire for help and allows targeting of support and resources to those who identify high levels of unmet needs. This systematic review aimed to critically examine the psychometric properties of measures that assess unmet needs of caregivers of people with dementia. METHODS: Medline, Embase, PsycINFO and Cochrane electronic databases were searched between January 1990 and August 2015 for English-language publications describing the development or validation of measures assessing the unmet needs of adult caregivers of people with dementia. The psychometric properties of included measures were assessed against standard criteria for psychometric quality. RESULTS: Four measures met the inclusion criteria. Only half of the indices of psychometric quality were tested across measures. Three measures had adequate internal consistency reliability, of which one also showed adequate test-retest reliability. Two measures reported adequate construct validity, while criterion validity was not assessed for any measure. CONCLUSIONS: There is a clear need to develop a psychometrically rigorous instrument to identify the unmet needs of caregivers of people with dementia. Copyright © 2016 John Wiley & Sons, Ltd.

Psychometric testing of the Mandarin version of the 34-item Short-Form Supportive Care Needs Survey in patients with cancer in mainland China.

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.

Stigma-related experiences in non-communicable respiratory diseases: A systematic review.

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.