Bayesian sample size calculations for comparing two strategies in SMART studies.

In the management of most chronic conditions characterized by the lack of universally effective treatments, adaptive treatment strategies (ATSs) have grown in popularity as they offer a more individualized approach. As a result, sequential multiple assignment randomized trials (SMARTs) have gained attention as the most suitable clinical trial design to formalize the study of these strategies. While the number of SMARTs has increased in recent years, sample size and design considerations have generally been carried out in frequentist settings. However, standard frequentist formulae require assumptions on interim response rates and variance components. Misspecifying these can lead to incorrect sample size calculations and correspondingly inadequate levels of power. The Bayesian framework offers a straightforward path to alleviate some of these concerns. In this paper, we provide calculations in a Bayesian setting to allow more realistic and robust estimates that account for uncertainty in inputs through the 'two priors' approach. Additionally, compared to the standard frequentist formulae, this methodology allows us to rely on fewer assumptions, integrate pre-trial knowledge, and switch the focus from the standardized effect size to the MDD. The proposed methodology is evaluated in a thorough simulation study and is implemented to estimate the sample size for a full-scale SMART of an internet-based adaptive stress management intervention on cardiovascular disease patients using data from its pilot study conducted in two Canadian provinces.

Healthcare professionals' perspectives on the unmet needs of cancer patients and family caregivers: global psycho-oncology investigation.

PURPOSE: This international study aimed to compare healthcare professionals' perspectives on the unmet needs of their cancer patients with those of family caregivers and to investigate the degree to which patients' age group moderates the associations. METHODS: Healthcare professionals involved in the care for cancer patients and their family caregivers were invited to participate in the International Psycho-Oncology Society (IPOS) Survivorship Online Survey. A total of 397 healthcare professionals from 34 countries provided valid study data. The participants evaluated whether the unmet need was the same for all age groups of patients and the degree of their patients' needs not being met per patients' age group. They evaluated the same questions for family caregivers. RESULTS: Patients' unmet needs in medical care were evaluated as greater than those of caregivers across all age groups. On the other hand, pediatric patients' unmet needs for spiritual concerns, sexuality/intimacy, and insomnia/fatigue were evaluated as greater than those of caregivers, whereas adolescent and young adult patients' unmet needs for symptom management were greater than those of caregivers. Patients' other unmet needs were evaluated as comparable with those of caregivers regardless of age groups. CONCLUSION: The findings provide insights how best healthcare providers stratify resources to address the unmet needs of patients and caregivers by the patients' age. Development of systematic assessment of unmet needs and provision of interventions tailored for patients' lifespan to address the unmet needs of cancer patients, and caregivers are warranted.

The Revised Identification of Seniors At Risk screening tool predicts readmission in older hospitalized patients: a cohort study.

BACKGROUND: The Identification of Seniors at Risk (ISAR) screening tool is a widely-used risk stratification tool for older adults in the emergency department (ED). Few studies have investigated the use of ISAR to predict outcomes of hospitalized patients. To improve usability a revised version of ISAR (ISAR-R), was developed in a quality improvement project. The ISAR-R is also widely used, although never formally validated. To address these two gaps in knowledge, we aimed to assess the ability of the ISAR-R to predict readmission in a cohort of older adults who were hospitalized (admitted from the ED) and discharged home. METHODS: This was a secondary analysis of data collected in a pre-post evaluation of a patient discharge education tool. Participants were patients aged 65 and older, admitted to hospital via the ED of two general community hospitals, and discharged home from the medical and geriatric units of these hospitals. Patients (or family caregivers for patients with mental or physical impairment) were recruited during their admission. The ISAR-R was administered as part of a short in-hospital interview. Providers were blinded to ISAR-R scores. Among patients discharged home, 90-day readmissions were extracted from hospital administrative data. The primary metrics of interest were sensitivity and negative predictive value. The Area Under the Curve (AUC) was also computed as an overall measure of performance. RESULTS: Of 711 attempted recruitments, 496 accepted, and ISAR-R was completed for 485. Of these 386 patients were discharged home with a complete ISAR-R, the 90-day readmission rate was 24.9%; the AUC was 0.63 (95% CI 0.57,0.69). Sensitivity and negative predictive value at the recommended cut-point of 2 + were 81% and 87%, respectively. Specificity was low (40%). CONCLUSIONS: The ISAR-R tool is a potentially useful risk stratification tool to predict patients at increased risk of readmission. Its high values of sensitivity and negative predictive value at a cut-point of 2 + make it suitable for rapid screening of patients to identify those suitable for assessment by a clinical geriatric team, who can identify those with geriatric problems requiring further treatment, education, and follow-up to reduce the risk of readmission.

Exploring Cancer Patients' Perceptions of Accessing and Experience with Using the Educational Material in the Opal Patient Portal.

PURPOSE: Opal is a new patient-centered mobile application that gives cancer patients access to their real time medical data in conjunction with disease- and treatment-specific patient education material. Few studies have focused on patients' experiences with such mobile applications. This study's objectives were to (1) explore cancer patients' perceptions of accessing the educational materials through Opal and (2) explore their experiences using these educational materials. METHODS: A qualitative descriptive design was used. Patients were invited to participate in the study via Opal itself. Semi-structured individual interviews were done in person or over the phone, transcribed verbatim and analyzed using qualitative content analysis. RESULTS: Nine women were interviewed. Three themes were identified as participants spoke about their perceptions of and experiences with Opal. First, Opal makes me feel like I have more control, conveying how learning more about their diagnosis and treatments allowed patients to advocate for themselves and plan their care. Second, Opal tends to reassure me, illustrating that having access to information was reassuring. Lastly, Opal is just starting to have information which could help meet my needs, reflecting patients' belief Opal is on the right track but could provide more of their medical record, treating team contact information and education material. CONCLUSION: Patients can feel more empowered when using patient-centered mobile applications, and mobile applications have potential for improving collaboration with healthcare professionals and care coordination. Healthcare professionals, including oncologists and nurses, should support patients' use of mobile applications and integrate them in their patient interactions.

The effects of self-management interventions on depressive symptoms in adults with chronic physical disease(s) experiencing depressive symptomatology: a systematic review and meta-analysis.

BACKGROUND: Chronic diseases are the leading cause of death worldwide. It is estimated that 20% of adults with chronic physical diseases experience concomitant depression, increasing their risk of morbidity and mortality. Low intensity psychosocial interventions, such as self-management, are part of recommended treatment; however, no systematic review has evaluated the effects of depression self-management interventions for this population. The primary objective was to examine the effect of self-management interventions on reducing depressive symptomatology in adults with chronic disease(s) and co-occurring depressive symptoms. Secondary objectives were to evaluate the effect of these interventions on improving other psychosocial and physiological outcomes (e.g., anxiety, glycemic control) and to assess potential differential effect based on key participant and intervention characteristics (e.g., chronic disease, provider). METHODS: Studies comparing depression self-management interventions to a control group were identified through a) systematic searches of databases to June 2018 [MEDLINE (1946 -), EMBASE (1996 -), PsycINFO (1967 -), CINAHL (1984 -)] and b) secondary 'snowball' search strategies. The methodological quality of included studies was critically reviewed. Screening of all titles, abstracts, and full texts for eligibility was assessed independently by two authors. Data were extracted by one author and verified by a second. RESULTS: Fifteen studies were retained: 12 for meta-analysis and three for descriptive review. In total, these trials included 2064 participants and most commonly evaluated interventions for people with cancer (n = 7) or diabetes (n = 4). From baseline to < 6-months (T1), the pooled mean effect size was - 0.47 [95% CI -0.73, - 0.21] as compared to control groups for the primary outcome of depression and - 0.53 [95% CI -0.91, - 0.15] at ≥ 6-months (T2). Results were also significant for anxiety (T1) and glycemic control (T2). Self-management skills of decision-making and taking action were significant moderators of depression at T1. CONCLUSION: Self-management interventions show promise in improving depression and anxiety in those with concomitant chronic physical disease. The findings may contribute to the development of future Self-management interventions and delivering evidence-based care to this population. Further high-quality RCTs are needed to identify sources of heterogeneity and investigate key intervention components.

Priorities for caregiver research in cancer care: an international Delphi survey of caregivers, clinicians, managers, and researchers.

PURPOSE: With an increased investment in psychosocial caregiving research, it becomes critical to establish the need for data of key stakeholders and future strategic directions. The purpose of this international Delphi study was to engage caregivers, clinicians, researchers, and managers to identify priority topics for caregiver research in cancer care. METHODS: A three-round, online Delphi survey took place. In round 1, stakeholders generated caregiver research topics by answering an open-ended question. Content analysis of stakeholders' answers identified topics to be included in the round 2 survey to rate their importance. The round 3 survey included topics with less than 80% agreement for stakeholders to reconsider in light of other participants' responses. RESULTS: In round 1, eighty-six topics were generated by 103 clinicians, 63 researchers, 61 caregivers, and 22 managers and grouped into 10 content areas: impact of cancer, support programs, vulnerable caregivers, technology, role in health care, caregiver-centered care, knowledge translation, environmental scan, financial cost of caregiving, and policy. Across rounds 2 and 3, nine topics achieved consensus for all stakeholder panels (e.g., home care interventions), with three of these emphasizing more research needed on the financial impact of informal caregiving (e.g., financial impact of "burnout" for caregivers and society). Of note, vulnerable caregivers and use of technology were content areas prioritized particularly by managers and researchers, but not caregivers. CONCLUSION: By establishing a confluence of perspectives around research priorities, this study ensures the interests of key stakeholders are integrated in strategic directions, increasing the likelihood of research capable of influencing practice, education, and policy.

The Effectiveness of Self-Management Interventions for Individuals with Low Health Literacy and/or Low Income: A Descriptive Systematic Review.

BACKGROUND: With the burden of chronic illness increasing globally, self-management is a crucial strategy in reducing healthcare costs and increasing patient quality of life. Low income and low health literacy are both associated with poorer health outcomes and higher rates of chronic disease. Thus, self-management represents an important healthcare strategy for these populations. The purpose of this study is to review self-management interventions in populations with low income or low health literacy and synthesize the efficacy of these interventions. METHODS: A systematic review of trials evaluating the efficacy of self-management interventions in populations with low income or low health literacy diagnosed with a chronic illness was conducted. Electronic databases were primarily searched to identify eligible studies. Data were extracted and efficacy summarized by self-management skills, outcomes, and content tailoring. RESULTS: 23 studies were reviewed, with ten reporting an overall positive effect on at least one primary outcome. Effective interventions most often included problem-solving as well as taking action and/or resource utilization. A wide range of health-related outcomes were considered, were efficacious empowerment and disease-specific quality of life were found to be significant. The efficacy of interventions did not seem to vary by duration, format, or mode of delivery or whether these included individuals with low health literacy and/or low income. Tailoring did not seem to impact on efficacy. DISCUSSION: Findings suggest that self-management interventions in populations with low income or low health literacy are most effective when three to four self-management skills are utilized, particularly when problem-solving is targeted. Healthcare providers and researchers can use these findings to develop education strategies and tools for populations with low income or low health literacy to improve chronic illness self-management.

Beyond using composite measures to analyze the effect of unmet supportive care needs on caregivers' anxiety and depression.

OBJECTIVE: Caregiver research has relied on composite measures (eg, count) of unmet supportive care needs to determine relationships with anxiety and depression. Such composite measures assume that all unmet needs have a similar impact on outcomes. The purpose of this study is to identify individual unmet needs most associated with caregivers' anxiety and depression. METHODS: Two hundred nineteen caregivers completed the 44-item Supportive Care Needs Survey and the Hospital Anxiety and Depression Scale (minimal clinically important difference = 1.5) at 6 to 8 months and 1, 2, 3.5, and 5 years following the patients' cancer diagnosis. The list of needs was reduced using partial least square regression, and those with a variance importance in projection >1 were analyzed using Bayesian model averaging. RESULTS: Across time, 8 items remained in the top 10 based on prevalence and were labelled "core." Three additional ones were labelled "frequent," as they remained in the top 10 from 1 year onwards. Bayesian model averaging identified a maximum of 3 significant unmet needs per time point-all leading to a difference greater than the minimal clinically important difference. For depression, none of the core unmet needs were significant, rather significance was noted for frequent needs and needs that were not prevalent. For anxiety, 3/8 core and 3/3 frequent unmet needs were significant. CONCLUSIONS: Those unmet needs that are most prevalent are not necessarily the most significant ones, and findings provide an evidence-based framework to guide the development of caregiver interventions. A broader contribution is proposing a different approach to identify significant unmet needs.

A fertility needs assessment survey of male cancer patients.

OBJECTIVE: To describe fertility-related informational needs and practices, and to examine if demographic characteristics are related to these needs and practices. METHODS: A needs assessment survey was conducted at three Canadian cancer centres. RESULTS: 192 male cancer patients (Mage = 33.6) completed the survey. Most patients (70%) recalled having had a discussion with a health care provider regarding their fertility and 44% banked their sperm. Patients reported not getting all the information that they wanted, eg, the risk that a future child may have the same type of cancer (78%), and what was covered by insurance plans (71%). Barriers to sperm preservation were urgency to begin cancer treatment (49%), not planning to have a child in the future (47%) and worries that cancer could be passed on to future children (38%). Participants' age and being the parent of a child were significantly associated with having had a discussion about fertility. Participants' age, province, being the parent of a child and the desire for future children were significantly associated with fertility preservation. CONCLUSIONS: Discussions with health care providers were more frequent, and fertility preservation rates were higher than in past studies, but still not all patients' questions were answered. Misconceptions about passing on cancer to one's child, and that sperm preservation will delay treatment, should be dispelled. Health care providers can ask patients if they have any desire to have children in the future as a way to initiate a discussion of fertility preservation. Key information gaps and psychosocial resource needs are suggested to fully meet male cancer patients' fertility-related concerns.

PROMIS depression measures perform similarly to legacy measures relative to a structured diagnostic interview for depression in cancer patients.

PURPOSE: To assess the convergent validity of the Patient-Reported Outcomes Measurement Information System (PROMIS) depression measures relative to legacy measures and criterion validity against a structured diagnostic interview for depression in an oncology sample. METHODS: 132 oncology/haematology outpatients completed the PROMIS Depression Computer Adaptive Test (PROMIS-D-CAT) and PROMIS Depression Short Form (PROMIS-D-SF) along with seven legacy measures: Beck Depression Inventory (BDI); Centre for Epidemiological Studies Depression (CES-D); Depression, Anxiety and Stress Scale; Hospital Anxiety and Depression Scale; Patient Health Questionnaire; Distress Thermometer and PSYCH-6. Correlations, area under the curve (AUC) and diagnostic accuracy statistics were calculated with Structured Clinical Interview as the gold standard. RESULTS: Both PROMIS measures correlated with all legacy measures at p < .001 (ρ = 0.589-0.810) and all AUCs (> 0.800) were comparable. At the cut-off points for mild depression of 53, the PROMIS measures had sensitivity (0.83 for PROMIS-D-CAT and 0.80 for PROMIS-D-SF) similar to or better than 6/7 legacy measures with high negative predictive value (> 90%). At cut-off points of 60 for moderate depression, PROMIS measures had specificity > 90%, similar to or better than all legacy measures and positive predictive value ≥ 0.50 (similar to 5/7 legacy measures). CONCLUSIONS: The convergent and criterion validity of the PROMIS depression measures in cancer populations was confirmed, although the optimal cut-off points are not established. PROMIS measures were briefer than BDI-II and CES-D but do not offer any advance in terms of diagnostic accuracy, reduced response burden or cost over other legacy measures of depression in oncology patients.

Relationships between supportive care needs and perceived burden in breast cancer survivor-caregiver dyads.

While burden in cancer caregivers is high and associated with poor outcomes, little is known about significance of specific supportive care needs' domains in determining survivors' or caregivers' perceived caregiver burden. This cross-sectional study explored which domains of survivor- and caregiver-reported supportive care needs were most associated with survivor- and caregiver-reported caregiver burden, in breast cancer survivor-caregiver dyads. Cancer survivors (N = 55) and their caregivers (N = 44) completed measures of supportive care needs, anxiety, depression, functional well-being and perceived caregiver burden. Correlation and linear regression analyses were used to determine relative significance of survivor and caregiver supportive care needs in accounting for variance in survivor and caregiver perceptions of burden. Higher survivor-perceived caregiver burden and higher caregiver-perceived difficulty of caregiving were associated with higher levels of survivor and caregiver supportive care needs. Survivors' psychological needs uniquely contributed to survivors' self-perceived burden, and survivors' sexual needs and caregivers' work and social needs uniquely contributed to caregivers' perceived difficulty of caregiving. Caregiver's perceived time spent caregiving was associated with access to services needs but not other needs. Survivor and caregiver supportive care needs and burden appear interdependent. Longitudinal research with larger samples is warranted to examine these relationships.

Why sample selection matters in exploratory factor analysis: implications for the 12-item World Health Organization Disability Assessment Schedule 2.0.

BACKGROUND: Sample selection can substantially affect the solutions generated using exploratory factor analysis. Validation studies of the 12-item World Health Organization (WHO) Disability Assessment Schedule 2.0 (WHODAS 2.0) have generally involved samples in which substantial proportions of people had no, or minimal, disability. With the WHODAS 2.0 oriented towards measuring disability across six life domains (cognition, mobility, self-care, getting along, life activities, and participation in society), performing factor analysis with samples of people with disability may be more appropriate. We determined the influence of the sampling strategy on (a) the number of factors extracted and (b) the factor structure of the WHODAS 2.0. METHODS: Using data from adults aged 50+ from the six countries in Wave 1 of the WHO's longitudinal Study on global AGEing and adult health (SAGE), we repeatedly selected samples (n = 750) using two strategies: (1) simple random sampling that reproduced nationally representative distributions of WHODAS 2.0 summary scores for each country (i.e., positively skewed distributions with many zero scores indicating the absence of disability), and (2) stratified random sampling with weights designed to obtain approximately symmetric distributions of summary scores for each country (i.e. predominantly including people with varying degrees of disability). RESULTS: Samples with skewed distributions typically produced one-factor solutions, except for the two countries with the lowest percentages of zero scores, in which the majority of samples produced two factors. Samples with approximately symmetric distributions, generally produced two- or three-factor solutions. In the two-factor solutions, the getting along domain items loaded on one factor (commonly with a cognition domain item), with remaining items loading on a second factor. In the three-factor solutions, the getting along and self-care domain items loaded separately on two factors and three other domains (mobility, life activities, and participation in society) on the third factor; the cognition domain items did not load together on any factor. CONCLUSIONS: High percentages of participants with no disability (i.e., zero scores) produce heavily censored data (i.e., floor effects), limiting data heterogeneity and reducing the numbers of factors retained. The WHODAS 2.0 appears to have multiple closely-related factors. Samples of convenience and those collected for other purposes (e.g., general population surveys) would usually be inadequate for validating measures using exploratory factor analysis.

A Descriptive Systematic Review of Physical Activity Interventions for Caregivers: Effects on Caregivers' and Care Recipients' Psychosocial Outcomes, Physical Activity Levels, and Physical Health.

BACKGROUND: Caregiving can adversely impact individuals' psychosocial and physical well-being. An important task in health research is to find effective ways to enhance caregivers' health and functioning. PURPOSE: To provide a systematic review of the efficacy of physical activity (PA) interventions for caregivers on their and the care recipients' psychosocial outcomes, PA levels, and physical health. METHODS: Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) checklist, a descriptive systematic review of studies examining the effects of PA interventions for caregivers on their outcomes and those of the care recipients was conducted. Studies were primarily identified through searching electronic databases. RESULTS: Fourteen studies were reviewed. PA interventions significantly decreased caregivers' distress and increased their well-being, quality of life, sleep quality, PA levels, self-efficacy for caregiving or exercise, and readiness for exercise. Most PA interventions targeted the caregiver alone. Two studies examined the impact of the intervention on the care recipient and found no significant effect. CONCLUSIONS: PA interventions hold promise in improving caregivers' outcomes. However, more high quality trials are needed before definitive conclusions can be drawn.

A pilot, multisite, randomized controlled trial of a self-directed coping skills training intervention for couples facing prostate cancer: accrual, retention, and data collection issues.

PURPOSE: To examine the acceptability of the methods used to evaluate Coping-Together, one of the first self-directed coping skill intervention for couples facing cancer, and to collect preliminary efficacy data. METHODS: Forty-two couples, randomized to a minimal ethical care (MEC) condition or to Coping-Together, completed a survey at baseline and 2 months after, a cost diary, and a process evaluation phone interview. RESULTS: One hundred seventy patients were referred to the study. However, 57 couples did not meet all eligibility criteria, and 51 refused study participation. On average, two to three couples were randomized per month, and on average it took 26 days to enrol a couple in the study. Two couples withdrew from MEC, none from Coping-Together. Only 44 % of the cost diaries were completed, and 55 % of patients and 60 % of partners found the surveys too long, and this despite the follow-up survey being five pages shorter than the baseline one. Trends in favor of Coping-Together were noted for both patients and their partners. CONCLUSIONS: This study identified the challenges of conducting dyadic research, and a number of suggestions were put forward for future studies, including to question whether distress screening was necessary and what kind of control group might be more appropriate in future studies.

Making Sense of Variations in Prevalence Estimates of Depression in Cancer: A Co-Calibration of Commonly Used Depression Scales Using Rasch Analysis.

BACKGROUND: The use of different depression self-report scales warrants co-calibration studies to establish relationships between scores from 2 or more scales. The goal of this study was to examine variations in measurement across 5 commonly used scales to measure depression among patients with cancer: Hospital Anxiety and Depression Scale-Depression subscale (HADS-D), Centre for Epidemiologic Studies Depression Scale (CES-D), Patient Health Questionnaire-9 (PHQ-9), Beck Depression Inventory-II (BDI-II), and Depression Anxiety and Stress Scale-Depression subscale (DASS-D). METHODS: The depression scales were completed by 162 patients with cancer. Participants were also assessed by the major depressive episode module of the Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders, 4th Edition. Rasch analysis and receiver operating characteristic curves were performed. RESULTS: Rasch analysis of the 5 scales indicated that these all measured depression. The HADS and BDI-II had the widest measurement range, whereas the DASS-D had the narrowest range. Co-calibration revealed that the cutoff scores across the scales were not equivalent. The mild cutoff score on the PHQ-9 was easier to meet than the mild cutoff score on the CES-D, BDI-II, and DASS-D. The HADS-D possible cutoff score was equivalent to cutoff scores for major to severe depression on the other scales. Optimal cutoff scores for clinical assessment of depression were in the mild to moderate depression range for most scales. CONCLUSIONS: The labels of depression associated with the different scales are not equivalent. Most markedly, the HADS-D possible case cutoff score represents a much higher level of depression than equivalent scores on other scales. Therefore, use of different scales will lead to different estimates of prevalence of depression when used in the same sample.

Couples coping with cancer: exploration of theoretical frameworks from dyadic studies.

OBJECTIVE: A diagnosis of cancer and subsequent treatment are distressing not only for the person directly affected, but also for their intimate partner. The aim of this review is to (a) identify the main theoretical frameworks underpinning research addressing dyadic coping among couples affected by cancer, (b) summarise the evidence supporting the concepts described in these theoretical frameworks, and (c) examine the similarities and differences between these theoretical perspectives. METHODS: A literature search was undertaken to identify descriptive studies published between 1990 and 2013 (English and French) that examined the interdependence of patients' and partners' coping, and the impact of coping on psychosocial outcomes. Data were extracted using a standardised form and reviewed by three of the authors. RESULTS: Twenty-three peer-reviewed manuscripts were identified, from which seven theoretical perspectives were derived: Relationship-Focused Coping, Transactional Model of Stress and Coping, Systemic-Transactional Model (STM) of dyadic coping, Collaborative Coping, Relationship Intimacy model, Communication models, and Coping Congruence. Although these theoretical perspectives emphasised different aspects of coping, a number of conceptual commonalities were noted. CONCLUSION: This review identified key theoretical frameworks of dyadic coping used in cancer. Evidence indicates that responses within the couple that inhibit open communication between partner and patient are likely to have an adverse impact on psychosocial outcomes. Models that incorporate the interdependence of emotional responses and coping behaviours within couples have an emerging evidence base in psycho-oncology and may have greatest validity and clinical utility in this setting.

Insights into preferences for psycho-oncology services among women with gynecologic cancer following distress screening.

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.

Using Rasch analysis to examine the distress thermometer's cut-off scores among a mixed group of patients with cancer.

PURPOSE: The distress thermometer (DT) is commonly used in cancer care to improve detection of distress. The DT's recommended cut-off score of 4 or 5 has typically been established using the Hospital Anxiety and Depression Scale (HADS) by receiver operating characteristic curve analysis. The present analysis complements these studies by critically examining the use of the HADS to identify the DT's cut-off score and corroborating the DT's cut-off scores using item response theory (Rasch analysis). METHODS: The DT and HADS were completed by 340 patients with cancer. Rasch dimensionality analysis was performed on the HADS-Total, and test characteristic curves were examined to equate the DT and the HADS subscales. Identified DT cut-off scores were then examined for their sensitivity and specificity. RESULTS: Rasch analysis did not support the unidimensionality of HADS-Total. The test characteristic curves indicated that a cut-off score of ≥8 on the HADS-Anxiety and HADS-Depression subscales was equivalent to a score of 6 and 7 on the DT, respectively. However, a DT cut-off score of 5 resulted in the best balance between sensitivity and specificity across the HADS-Anxiety and HADS-Depression subscales. CONCLUSIONS: Despite being a popular practice, the present findings did not support combining the HADS-Anxiety and HADS-Depression subscales to identify the DT's cut-off score. Furthermore, these results inform the use of the DT as a preliminary screening tool and suggest that when a single screen is used, a DT cut-off score of 6 or 7 might be more appropriate than the typical cut-off score of 4.

Looking beyond disfigurement: the experience of patients with head and neck cancer.

Despite the frequent occurrence of head and neck cancer (HNC) disfigurement, little is known about its psychosocial impact on patients. This study aimed to understand the lived experience of disfigurement in HNC and explore what patients considered to be its influences. Fourteen disfigured HNC patients participated in a 45-to-120-minute in-depth, semistructured interview, which was analyzed qualitatively using interpretive phenomenology. A majority of participants (64 percent) were considered to be at an advanced cancer stage (stage III or stage IV). Patients' experiences revolved around the concept of a ruptured self-image (a discontinuity in sense of self). Forces triggering this ruptured self-image created a sense of "embodied angst", in which disfigurement served as a constant reminder of the patient's cancer and associated foundational malaise. Other influences fostered a sense of normalcy, balance, and acceptance. Participants oscillated between these two states as they grew to accept their disfigurement. This study's findings could guide supportive interventions aimed at helping patients face head and neck surgery.