From patient-reported outcomes (PROs) to family-reported outcomes (FROs): Acceptability and perceived usefulness of routine screening in cancer care.

OBJECTIVES: To explore the acceptability of screening for family-reported outcomes (FROs) among cancer caregivers (unpaid family members or friends who provide support to patients with cancer) and identify from their perspective the key components of a FRO screening program. METHODS: Using a qualitative descriptive design, semi-structured interviews were undertaken with 23 adult caregivers of people with cancer between 2020 and 2021. Interview questions focused on acceptability of FRO screening, types of FROs, timing/frequency of screening, preferred resources following screening, and communication of FROs to patients and clinicians. Participants were recruited in Canada. Interviews were audio-recorded, transcribed verbatim, and analyzed using thematic analysis and constant comparison. RESULTS: Almost all caregivers welcomed FRO screening in usual care and viewed it as an avenue toward obtaining more resources. Other potential benefits of FRO screening included increased self-reflection and role acknowledgment. Caregivers prioritized screening for emotional symptoms, and most preferred that the results be shared with the patient's treating team rather than their primary care provider. Caregivers did not want results to be shared with patients, instead favoring learning how best to discuss results with patients. Many spoke of a "one stop shop" containing all relevant information on caring for the patient (first) and for themselves (second). Opinions regarding timing and frequency of FRO screening differed. Periodic administration of FRO measures, with each one not exceeding 20 minutes, was deemed appropriate. SIGNIFICANCE OF RESULTS: This study extends the concept of patient-reported outcome measures to caregivers, and findings can be used to guide the development of FRO screening programs.

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.

A proof-of-concept study of iCope: A nurse-led psychoeducational telephone intervention for women attending a rapid diagnostic centre for breast abnormality.

The period between the initial discovery of a suspicious breast lesion and a confirmed diagnosis is a time of significant psychological distress, heightened anxiety, and uncertainty for many women. This proof of concept (PoC) study explored the clinical outcomes and acceptability of iCope, a nurse-led psycho-educational telephone intervention aimed to assist with uncertainty, anxiety and coping in women going through a Rapid Diagnostic Centre (RDC) offering quick diagnosis of breast cancer (same day to three-day post-investigation). Guided by the Uncertainty Theory, and using a one-arm pretest-posttest design, two brief 15-minute telephone sessions were delivered by a nurse prior to the women's day of testing at the RDC and three days after the receipt of their results. Six women completed measures of anxiety, uncertainty, and coping before the clinic visit, three days and three weeks after receiving their test results. Results show that the implementation of the telephone intervention was challenging, yet may offer potential for positive impact. That is, trends of decreased uncertainty and anxiety in participants over time were noted. Considering the difficulty observed in the recruitment and delivering the two interventions in the timeline planned, feasibility testing is recommended before the conduct of a large-scale study.

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.

Non-pharmacological Interventions for Caregivers with Depression and Caregivers of Care Recipients with Co-morbid Depression: Systematic Review and Meta-analysis.

BACKGROUND: Caregivers experiencing depression or caring for people experiencing depression are at risk of high burden. This systematic review examined the effect of non-pharmacological interventions for caregivers that (a) target improving caregivers' depressive symptoms, (b) help caregivers manage the depressive symptoms of the person for whom they provide care, or (c) both (a) and (b). METHODS: Eligible trials published between January 1, 1985, and May 30, 2019 were retrieved from five electronic databases. The studies' methodological quality was assessed against 15 criteria. Pooled effect sizes (ESs) were calculated, and heterogeneity assessed using the Higgin's I2 statistic. Meta-regressions were also conducted to identify significant moderators (participant sub-group analyses) and mediators (identify how the interventions worked). RESULTS: Sixteen studies evaluating 18 interventions were included for review. These studies included a total of 2178 participants (mean = 94, SD = 129.18, range 25-518). The most common condition (n = 10/16) of the care recipient was dementia. The average methodological score was in the moderate range (8.76/15). Interventions had a moderate effect on caregivers' depression in the short term (ES = - 0.62, 95% CI - 0.81, - 0.44), but the effect dissipated over time (ES = - 0.19; 95% CI - 0.29, - 0.09). A similar pattern was noted for anxiety. The moderator analysis was not significant, and of the mediators examined, significant ones were self-management skills of taking action, problem solving, and decision-making. DISCUSSION: Non-pharmacological interventions are associated with improvement of depression and anxiety in caregivers, particularly in the short term. The main recommendation for future interventions is to include the self-management skills taking action, problem-solving, and decision-making. Enhancing the effect of these interventions will need to be the focus of future studies, particularly examining the impact of booster sessions. More research is needed on non-dementia caregiving and dyadic approaches.

Evaluation of online, publicly available cancer-related educational and self-management resources for symptom management.

OBJECTIVE: The aims of this study were to evaluate the readability, suitability, and quality of publicly available online self-management (SM) resources for people with cancer. METHODS: Resources were identified using two strategies: (1) a targeted search of 20 Canadian organizations and (2) a Google search. These were evaluated using the Suitability Assessment of Materials (SAM), the DISCERN tool for quality, and readability indices. The SM skills (e.g., problem-solving) and symptom management strategies addressed by each resource were also assessed. Descriptive and hierarchical cluster analyses were performed to identify resources of the highest suitability and quality as well as resource characteristics associated with higher quality and suitability. RESULTS: A total of 92 resources were evaluated. The mean reading grade level for English resources was 10.29 (SD = 1.64, range of 7.05 to 15.09) and 12.62 for French resources (SD = 2.27, range of 10.12 to 15.65). The mean SAM score across the sample was 50.4% (SD = 10.6%), or 'adequate', and the mean DISCERN score was 61.1% (SD = 11.8%), or 'fair'. The cluster analysis indicated that 10 resources scored highly on both the SAM and the DISCERN. In total, 91 symptom management strategies were identified. On average, resources addressed 2.73 SM skills (SD = 1.58). CONCLUSIONS: There is a need for plain language resources for people with lower reading ability and resources that incorporate more SM skills. Study findings will help healthcare professionals, patients, and their families identify optimal resources to address cancer-related symptoms.

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.

Moderators of intervention efficacy for Finding My Way: A web-based psychosocial intervention for cancer-related distress.

PURPOSE: The present analysis explores whether demographic, psychosocial, or intervention adherence factors moderated treatment efficacy of Finding My Way (FMW), an efficacious self-directed web-based psychosocial program for newly diagnosed curatively treated cancer patients. METHODS: Participants (n = 191) completed a 6-module intervention (n = 94) or attention-control (n = 97) program. Outcome measures were completed at baseline (T0), post-program (T1), 3-month (T2), and 6-month (T3) follow ups. Age, gender, social support, information processing style (monitoring vs blunting), emotion-regulation difficulties, and intervention adherence were examined as potential moderators. RESULTS: Age moderated emotional functioning and general distress at T3 with significant intervention benefits only observed in younger participants; age moderated cognitive functioning at T1, with intervention benefits only found in older participants. Gender moderated helplessness/hopelessness, emotional functioning, and cognitive avoidance at T1 with men benefitting more from receiving the intervention vs control. Monitoring information-processing style moderated cancer distress and anxious preoccupation at T3: higher monitors benefitted more from receiving the intervention vs control. Program adherence moderated global QOL, emotional functioning and social functioning at T2 and T3; cognitive avoidance (T1), anxious preoccupation (T2) and role function (T3), with those who completed more of the program benefitting more if they received the intervention than control. Emotion dysregulation and social support each moderated role function at T2, with those more dysregulated and less socially supported benefitting more if they received the intervention than control. CONCLUSIONS: For select outcomes, FMW is more effective for patients with specific characteristics; these findings can inform future tailoring and targeting of online programs for cancer-distress.

Using confirmatory factor analysis and Rasch analysis to examine the dimensionality of The Patient Assessment of Care for Chronic Illness Care (PACIC).

PURPOSE: The PACIC assesses key components of the Chronic Care Model. The purpose of this study is to examine the dimensionality and psychometric properties of the PACIC. METHODS: A convenience sample of 221 adults in Canada who self-identified as living with one or more physical and/or mental chronic diseases was invited to participate via an online survey link. Rasch analysis was performed, including item and person misfit, reliability, response format, targeting, unidimensionality of subscales, and differential item functioning (DIF). Also, Confirmatory Factor Analysis (CFA) was conducted and model fit of alternative factor structures proposed for the PACIC in the literature and those suggested by the Rasch analysis were explored. RESULTS: The patient activation, delivery system, and problem-solving subscales fit the Rasch model expectations; no modifications were required. The goal setting item 10 had a disordered threshold and was recoded. Four of the five follow-up subscale items had a disordered threshold and were recoded. All subscales were unidimensional and no local dependency was detected. DIF was only detected for some items in the follow-up subscale. The CFA revealed that none of the published factor structures fit the data; the fit statistics were appropriate when item 10 was removed and the follow-up subscale was removed. CONCLUSIONS: Improving chronic disease care relies upon having validated measures to evaluate the extent to which care goals are met. With some modifications, four of the five PACIC subscales were found to be psychometrically robust.

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.

Chronic Illness Management in Culturally and Linguistically Diverse Patients: Exploring the Needs, Access, and Understanding of Information.

In Canada, people from culturally and linguistically diverse (CALD) backgrounds are at a greater risk of developing a chronic illness, and are more likely to experience adverse health effects and challenges in accessing high-quality care compared with Canadian-born individuals. This, in part, has been attributed to having inadequate access to information and resources needed to manage their illness(es). A qualitative descriptive design and inductive content analysis were used to explore the information needs of 24 CALD patients with chronic illnesses. Participants identified medical, lifestyle, and psychosocial information needs. How much information was needed depended on such antecedents as illness trajectory, severity, and perception. Most information needs remained unmet. A number of communication strategies were identified to bridge language barriers that go beyond translation and are based on effective health education strategies. Findings can help health care professionals better identify CALD patients' information needs and provide strategies that go beyond translation.

Perceptions, needs and preferences of chronic disease self-management support among men experiencing homelessness in Montreal.

OBJECTIVE: This study explored the perceptions, needs and preferences for chronic disease self- management (SM) and SM support among men experiencing homelessness. DESIGN: A qualitative interpretive approach was used. Eighteen semi-structured interviews were conducted with 18 homeless men with a chronic disease at an emergency overnight shelter of Welcome Hall Mission (WHM) in Montreal, Quebec. Interviews were audio-recorded, transcribed verbatim and thematically analysed. RESULTS: The majority of participants perceived SM as important, described confidence to perform medical SM behaviours, and creatively adapted their SM behaviours to homelessness. Emotional SM was described as most challenging, as it was intertwined with the experience of homelessness. Three vulnerable groups were identified: (a) those with no social networks, (b) severe physical symptoms and/or (c) co-morbid mental illness. The preferred mode of delivery for SM support was through consistent contacts with health-care providers (HCPs) and peer-support initiatives. DISCUSSION AND CONCLUSIONS: Despite competing demands to fulfill basic needs, participants valued chronic disease SM and SM support. However, SM support must address complex challenges relating to homelessness including emotional SM, multiple vulnerabilities and barriers to forming relationships with HCPs.

"It sort of hit me like a baseball bat between the eyes": a qualitative study of the psychosocial experiences of mesothelioma patients and carers.

PURPOSE: Mesothelioma is an insidious disease with a generally poor prognosis even after invasive treatment. This qualitative study aimed to explore the experiences of patients suffering from mesothelioma and their carers and their perceptions of how their needs may be addressed. METHODS: Eligible patients and carers were identified by a lung cancer care coordinator at each participating site, and invited to participate in one-on-one semi-structured telephone interviews (n = 5 patients, n = 3 carers), or in one of two focus groups (n = 3 patients, n = 3 carers). Discussions focusing on participants' experiences relating to physical, psychological, social, information and carer domains were audio-recorded, transcribed verbatim and thematically analysed. RESULTS: The five major themes identified were (1) time of diagnosis is a particularly difficult period; (2) the timeliness, accuracy and balance of mesothelioma information is problematic; (3) coping strategies ranged from antagonism to acceptance; (4) the emotional and physical load of caring for the patient is significant and (5) carers need one-on-one support. CONCLUSION: Mesothelioma patients and their carers face significant challenges, particularly around the time of diagnosis and in the physical, psychological and social/practical domains. There is a clear need for additional information, delivered in a timely and psychologically sensitive manner, as well as for practical and emotional support. Quantitative research may shed greater light on the prevalence and severity of challenges and needs reported by participants, and determine the usefulness of resources such as case workers and dyadic coping interventions in addressing these.

Finding My Way: results of a multicentre RCT evaluating a web-based self-guided psychosocial intervention for newly diagnosed cancer survivors.

PURPOSE: This multicentre randomised controlled trial examined the efficacy of Finding My Way (FMW), a 6-week/6-module online self-guided psychotherapeutic intervention for newly diagnosed curatively treated cancer survivors, in reducing cancer-related distress and improving quality of life compared to an online attention control. METHODS: Participants were randomised on a 1:1 ratio using a gender-stratified block design to intervention (n = 94) or attention control (n = 97), and were blinded to condition. Assessments were completed at baseline (T0), post-intervention (T1), 3 months (T2), and 6 months (T3) post-intervention. Mixed model repeated measures analyses examined differences between groups for cancer-specific distress (primary outcome) and general distress, quality of life (QoL), coping, and health service utilisation (secondary outcomes). RESULTS: While both groups reported reduced cancer-specific and general distress over time, between-group differences were not significant. Intervention participants reported lower total health service utilisation and supportive care utilisation post-intervention than controls (total HS use: between-group mean difference = - 1.07 (- 1.85 to - 0.28); supportive care use: between-group mean difference = - 0.64 (- 1.21 to - 0.06)) and significantly higher emotional functioning at 3 months (between-group mean difference = 7.04 (0.15 to 13.9)). At 6 months, the supportive care utilisation finding reversed (between-group mean difference = 0.78 points (0.19 to 1.37). Across remaining QoL and coping outcomes, no significant group differences emerged. CONCLUSIONS: While both groups experienced reductions in distress, between-group differences were not significant. This contrasts with the significantly improved emotional functioning observed in FMW participants at 3 months and the short-term reductions in health service utilisation. Long-term increases in supportive care service utilisation suggest FMW only met needs while being actively used. TRIAL REGISTRATION: ACTRN12613000001796;  http://www.ANZCTR.org.au/ACTRN12613000001796.aspx.

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.

Developing education materials for caregivers of culturally and linguistically diverse patients: Insights from a qualitative analysis of caregivers' needs, access and understanding of information.

OBJECTIVES: To explore the information needs of caregivers of culturally and linguistically diverse (CALD) patients, and how they access and understand health information related to the management of their care person's chronic illness(es). BACKGROUND: Caregivers of CALD patients experience greater unmet needs compared to the general caregiver population. They experience many challenges in identifying resources and accessing formal supports to aid in self-management behaviours. METHODS: Eleven caregivers were recruited from outpatient clinics in Québec, Canada. Consenting caregivers participated in one face-to-face or phone interview. A qualitative descriptive design and inductive content analysis were used to identify themes. RESULTS: Caregivers described a "village" approach to caregiving in which more than one individual was involved in patient care. The specific roles ascribed to caregivers defined their information needs. Caregivers described two categories of information needs: perceived and unperceived. Perceived information needs were explicit, and centred on the medical management of illnesses. Unperceived needs were unrecognized knowledge gaps that emerged during interviews and focused on self-care. CONCLUSION: Although caregivers' perceived needs are often met, their unperceived needs remain unmet. Health-care providers should perform need assessments to identify caregivers' unperceived needs, with the aims of providing culturally competent care and ongoing support.

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.