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.

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.

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.

Relationships between nutritional knowledge, obesity, and sleep disorder severity.

Obstructive sleep apnea affects 20% of the adult population. Weight control is considered the best non-medical means of managing the condition, therefore improving nutritional knowledge in individuals may be an appropriate strategy. This study aimed to describe the relationship between nutritional knowledge and: (i) sleep disorder severity; (ii) body mass index; and (iii) demographic characteristics in persons suspected of obstructive sleep apnea. Nutrition knowledge scores were also compared with the general population. Consecutive newly-referred patients attending the sleep laboratory for diagnostic polysomnography were invited to participate. Those who consented (n = 97) were asked to complete a touchscreen survey. Apnea-hypopnea index to measure sleep disorder severity and anthropometric measurements were obtained from the clinic. A quarter of participants were diagnosed with severe obstructive sleep apnea; and a majority (88%) were classed as being overweight or obese. The overall mean nutrition knowledge score was 58.4 ± 11.6 (out of 93). Nutrition knowledge was not associated with sleep disorder severity, body mass index or gender. The only significant difference detected was in relation to age, with older (≥35 years) participants demonstrating greater knowledge in the 'food choices' domain compared with their younger counterparts (18-34 years; P < 0.030). Knowledge scores were similar to the general population. The findings suggest that nutrition knowledge alone is not an important target for weight control interventions for people with obstructive sleep apnea. However, given the complexities of sleep disorders, it may complement other strategies.

Are we missing the Institute of Medicine's mark? A systematic review of patient-reported outcome measures assessing quality of patient-centred cancer care.

BACKGROUND: The Institute of Medicine (IOM) has endorsed six dimensions of patient-centredness as crucial to providing quality healthcare. These dimensions outline that care must be: 1) respectful to patients' values, preferences, and expressed needs; 2) coordinated and integrated; 3) provide information, communication, and education; 4) ensure physical comfort; 5) provide emotional support-relieving fear and anxiety; and 6) involve family and friends. However, whether patient-reported outcome measures (PROMs) comprehensively cover these dimensions remains unexplored. This systematic review examined whether PROMs designed to assess the quality of patient-centred cancer care addressed all six IOM dimensions of patient-centred care and the psychometric properties of these measures. METHODS: Medline, PsycINFO, Current Contents, Embase, CINAHL and Scopus were searched to retrieve published studies describing the development and psychometric properties of PROMs assessing the quality of patient-centred cancer care. Two authors determined if eligible PROMs included the six IOM dimensions of patient-centred care and evaluated the adequacy of psychometric properties based on recommended criteria for internal consistency, test-retest reliability, face/content validity, construct validity and cross-cultural adaptation. RESULTS: Across all 21 PROMs, the most commonly included IOM dimension of patient-centred care was "information, communication and education" (19 measures). In contrast, only five measures assessed the "involvement of family and friends." Two measures included one IOM-endorsed patient-centred care dimension, two measures had two dimensions, seven measures had three dimensions, five measures had four dimensions, and four measures had five dimensions. One measure, the Indicators (Non-small Cell Lung Cancer), covered all six IOM dimensions of patient-centred care, but had adequate face/content validity only. Eighteen measures met the recommended adequacy criteria for construct validity, 15 for face/content validity, seven for internal consistency, three for cross-cultural adaptation and no measure for test-retest reliability. CONCLUSIONS: There are no psychometrically rigorous PROMs developed with cancer patients that capture all six IOM dimensions of patient-centred care. Using more than one measure or expanding existing measures to cover all six patient-centred care dimensions could improve assessment and delivery of patient-centred care. Construction of new comprehensive measures with acceptable psychometric properties that can be used with the general cancer population may also be warranted.

A randomized controlled trial of the effectiveness of a pre-recruitment primer letter to increase participation in a study of colorectal screening and surveillance.

BACKGROUND: Recruiting cancer patients is a barrier often encountered in research trials. However, very few randomized trials explore strategies to improve participation rates. The purpose of this study was to evaluate the effectiveness of a pre-recruitment primer letter to recruit persons diagnosed with colorectal cancer for a research trial. METHODS: Potentially eligible participants were identified by the Victorian Cancer Registry. A total of 1,062 participants were randomized to receive either a mailed explanatory primer letter designed to encourage research participation, or no primer letter. Two weeks after the intervention, the Victorian Cancer Registry sought permission from patients to release their contact details to researchers. Those who agreed were contacted and invited to the study. RESULTS: Pre-recruitment encouragement was not effective at increasing recruitment, with no significant differences demonstrated between experimental groups. Overall, 40% (n = 425) consented to participate, 25% (n = 243) refused and 35% (n = 394) did not respond. CONCLUSIONS: While this study demonstrated disappointing outcomes, pre-recruitment letters should not be ruled out as an approach altogether. Rather, future research should explore whether other factors to increase motivation, such as intensity and timing, are feasible and acceptable for contacting cancer patients. TRIAL REGISTRATION: Australian and New Zealand Clinical Trials Registry, ACTRN12609000628246.

Translational Research Grants Scheme (TRGS): a new approach to strengthening health system research capacity.

BACKGROUND: Bridging the 'gap' between research evidence and the complexities of policy and practice is central to health improvement. The Translational Research Grants Scheme (TRGS) in New South Wales (NSW), Australia, is a funding scheme aimed at reducing the time between research generation and translation to policy and practice. The TRGS is also an important part of NSW Health's efforts to harness and strengthen research capacity to improve health service delivery. METHODS: A document review and interviews (n = 12) with key stakeholders were undertaken following the first round of TRGS funding in November 2016. The communications from continuing quality improvement processes over the three funding rounds have provided further insight. RESULTS AND DISCUSSION: A total of 53 projects have been funded under the scheme, with recipients across many NSW Health organisations. NSW Health has committed more than $24 million to date. Round one of the TRGS was received well by the policy makers, Local Health Districts and research stakeholders interviewed. Of particular note were: the requirement for Chief Executives to demonstrate strong support for the implementation of findings; requirements to partner with state-wide policy leads and clinical networks; and capacity-building outcomes of the scheme. The ongoing quality improvement processes indicate that the program continues to be well received, with improvements to partnership arrangements, and an acknowledgement of the challenge that arises because the scheme, by nature of its capacity-building aim, attracts proposals from a range of research experience. LESSONS LEARNT: The TRGS is filling an important gap in the research funding landscape in NSW and is well regarded by stakeholders. To ensure that the TRGS is achieving its intended aims, an evaluation of the impact of the scheme will take place during 2018-19.

Impact of Perceived Stigma in People Newly Diagnosed With Lung Cancer: A Cross-Sectional Analysis.

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.

Techniques for Improving Communication of Emotional Content in Text-Only Web-Based Therapeutic Communications: Systematic Review.

BACKGROUND: Web-based typed exchanges are increasingly used by professionals to provide emotional support to patients. Although some empirical evidence exists to suggest that various strategies may be used to convey emotion during Web-based text communication, there has been no critical review of these data in patients with chronic conditions. OBJECTIVES: The objective of this review was to identify the techniques used to convey emotion in written or typed Web-based communication and assess the empirical evidence regarding impact on communication and psychological outcomes. METHODS: An electronic search of databases, including MEDLINE, CINAHL, PsycINFO, EMBASE, and the Cochrane Library was conducted to identify literature published from 1990 to 2016. Searches were also conducted using Google Scholar, manual searching of reference lists of identified papers and manual searching of tables of contents for selected relevant journals. Data extraction and coding were completed by 2 reviewers (10.00% [573/5731] of screened papers, at abstract/title screening stage; 10.0% of screened [69/694] papers, at full-text screening stage). Publications were assessed against the eligibility criteria and excluded if they were duplicates, were not published in English, were published before 1990, referenced animal or nonhuman subjects, did not describe original research, were not journal papers, or did not empirically test the effect of one or more nonverbal communication techniques (for eg, smileys, emoticons, emotional bracketing, voice accentuation, trailers [ellipsis], and pseudowords) as part of Web-based or typed communication on communication-related variables, including message interpretation, social presence, the nature of the interaction (eg, therapeutic alliance), patient perceptions of the interaction (eg, participant satisfaction), or psychological outcomes, including depression, anxiety, and distress. RESULTS: A total of 6902 unique publications were identified. Of these, six publications met the eligibility criteria and were included in a narrative synthesis. All six studies addressed the effect of smileys or emoticons on participant responses, message interpretation, or social presence of the writer. None of these studies specifically targeted chronic conditions. It was found that emoticons were more effective in influencing the emotional impact of a message than no cue and that smileys and emoticons were able to convey a limited amount of emotion. No studies addressed other techniques for conveying emotion in written communication. No studies addressed the effects of any techniques on the nature of the interaction (eg, therapeutic alliance), patient perceptions of the interaction (eg, participant satisfaction), or psychological outcomes (depression, anxiety, or distress). CONCLUSIONS: There is a need for greater empirical attention to the effects of the various proposed techniques for conveying emotion in Web-based typed communications to inform health service providers regarding best-practice communication skills in this setting.

Examining uptake of online education on obstructive sleep apnoea in general practitioners: a randomised trial.

BACKGROUND: Obstructive sleep apnoea (OSA) affects up to 28 % of the adult population in Western countries. The detection and management of OSA by general practitioners (GPs) can be poor. The study aimed to examine what influence enhanced invitations had on uptake of on-line learning modules for OSA by GPs, and whether recent referrals of patients to sleep specialists influenced uptake. METHODS: Practicing GPs in regional Australia were identified and randomised to receive either an enhanced or standard invitation letter to a new on-line education module for OSA. The enhanced letter included indication that the module was eligible for professional accreditation and described the prevalence and burden of sleep disorders. Some included extra emphasis if the GP had recently referred a patient for diagnostic investigation of OSA. Two reminder letters were sent. RESULTS: Of 796 eligible GPs who received the letters, sixteen (2 %) accessed the website and four completed the modules over the four-month study period. GPs who received an enhanced invitation letter were not significantly more likely to access the website compared to GPs who received the standard invitation letter. Recent referral of a patient for diagnostic investigation was also not a significant factor in influencing use of the module. CONCLUSION: GP interest in on-line education about OSA appears low, and emphasis of relevant recent past patient(s) and the opportunity for professional education points was not successful in increasing engagement. There is a need to identify effective approaches to improving the detection and management of OSA in general practice.

How can we improve stroke thrombolysis rates? A review of health system factors and approaches associated with thrombolysis administration rates in acute stroke care.

BACKGROUND: Thrombolysis using intravenous (IV) tissue plasminogen activator (tPA) is one of few evidence-based acute stroke treatments, yet achieving high rates of IV tPA delivery has been problematic. The 4.5-h treatment window, the complexity of determining eligibility criteria and the availability of expertise and required resources may impact on treatment rates, with barriers encountered at the levels of the individual clinician, the social context and the health system itself. The review aimed to describe health system factors associated with higher rates of IV tPA administration for ischemic stroke and to identify whether system-focussed interventions increased tPA rates for ischemic stroke. METHODS: Published original English-language research from four electronic databases spanning 1997-2014 was examined. Observational studies of the association between health system factors and tPA rates were described separately from studies of system-focussed intervention strategies aiming to increase tPA rates. Where study outcomes were sufficiently similar, a pooled meta-analysis of outcomes was conducted. RESULTS: Forty-one articles met the inclusion criteria: 7 were methodologically rigorous interventions that met the Cochrane Collaboration Evidence for Practice and Organization of Care (EPOC) study design guidelines and 34 described observed associations between health system factors and rates of IV tPA. System-related factors generally associated with higher IV tPA rates were as follows: urban location, centralised or hub and spoke models, treatment by a neurologist/stroke nurse, in a neurology department/stroke unit or teaching hospital, being admitted by ambulance or mobile team and stroke-specific protocols. Results of the intervention studies suggest that telemedicine approaches did not consistently increase IV tPA rates. Quality improvement strategies appear able to provide modest increases in stroke thrombolysis (pooled odds ratio = 2.1, p = 0.05). CONCLUSIONS: In order to improve IV tPA rates in acute stroke care, specific health system factors need to be targeted. Multi-component quality improvement approaches can improve IV tPA rates for stroke, although more thoughtfully designed and well-reported trials are required to safely increase rates of IV tPA to eligible stroke patients.

Nicotine replacement therapy as a smoking cessation aid among disadvantaged smokers: What answers do we need?

In Australia and New Zealand, population groups who experience social disadvantage smoke at much higher rates than the general population. As there are limited data specific to these groups regarding the success of nicotine replacement therapy for smoking cessation, this commentary will provide an overview of the relevant international literature supplemented with observational data relevant to the policy contexts in Australia and New Zealand. [Paul C, Wolfenden L, Tzelepis F, Yoong S, Bowman J, Wye P, Sherwood E, Rose S, Wiggers J. Nicotine replacement therapy as a smoking cessation aid among disadvantaged smokers: What answers do we need? Drug Alcohol Rev 2016;35:785-789].

Protocol for a Randomized Controlled Trial of Proactive Web-Based Versus Telephone-Based Information and Support: Can Electronic Platforms Deliver Effective Care for Lung Cancer Patients?

BACKGROUND: Community-based services such as telephone support lines can provide valuable informational, emotional, and practical support for cancer patients via telephone- or Web-based (live chat or email) platforms. However, very little rigorous research has examined the efficacy of such services in improving patient outcomes. OBJECTIVE: This study will determine whether: proactive telephone or Web-delivered support produces outcomes superior to printed information; and Web-delivered support produces outcomes comparable to telephone support. METHODS: A consecutive sample of 501 lung cancer outpatients will be recruited from 50 Australian health services to participate in a patient-randomized controlled trial (RCT). Eligible individuals must: be 18 years or older; have received a lung cancer diagnosis (including mesothelioma) within the previous 4 months; have an approximate life expectancy of at least 6 months; and have Internet access. Participants will be randomly allocated to receive: (1) an information booklet, (2) proactive telephone support, or (3) proactive Web support, chat, and/or email. The primary patient outcomes will be measured by the General Health Questionnaire (GHQ-12) and Health Education and Impact Questionnaire (heiQ) at 3 and 6 months post recruitment. The acceptability of proactive recruitment strategies will also be assessed. RESULTS: It is hypothesized that participants receiving telephone or Web support will report reduced distress (GHQ-12 scores that are 0.3 standard deviations (SD) lower) and greater self-efficacy (heiQ scores that are 0.3 SDs higher) than participants receiving booklets. Individuals receiving Web support will report heiQ scores within 0.29 SDs of individuals receiving telephone support. CONCLUSIONS: If proven effective, electronic approaches such as live-chat and email have the potential to increase the accessibility and continuity of supportive care delivered by community-based services. This evidence may also inform the redesigning of helpline-style services to be effective and responsive to patient needs.

Assessment of family history of colorectal cancer in primary care: perceptions of first degree relatives of people with colorectal cancer.

OBJECTIVE: First degree relatives (FDRs) of someone with colorectal cancer (CRC) are at increased risk of the disease. In this study we examine the factors associated with discussing family history of CRC with a health professional. METHODS: People with CRC, recruited through the population-based Victorian Cancer Registry in Australia, were asked to refer FDRs to the study. Eight hundred and nineteen FDRs completed a telephone interview. RESULTS: Thirty-six percent of FDRs recalled ever being asked about their family history of bowel cancer by a health professional. Factors associated with having this discussion were being aged 50-60 years, having a university education, being in the potentially high risk category, being very worried about getting bowel cancer and knowing that family history increases risk through discussions with family, friends or their own education. CONCLUSION: Despite evidence that doctor endorsement is a key factor in the uptake of CRC screening, our study shows that the majority of FDRs do not recall being asked by a health professional about their family history. PRACTICE IMPLICATIONS: There is a need to identify the most appropriate method to improve rates of health professional discussion of family history with relatives of CRC patients in order to improve screening rates.

Do cancer helplines deliver benefits to people affected by cancer? A systematic review.

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.