The Agency, Resources, and Institutional Structures for Sanitation-related Empowerment (ARISE) Scales: Development and validation of measures of women's empowerment in urban sanitation for low- and middle-income countries.

Sustainable Development Goal 6 aims to ensure access to water and sanitation for all, and target 6.2 emphasizes "paying special attention to the needs of women and girls". Research documenting how water, sanitation and hygiene (WASH) conditions impact women's and girls' lives is growing. However, no rigorously validated survey instruments exist for measuring empowerment within the WASH sector. The objective of our study was to develop and validate survey instruments to measure sub-domains of women's empowerment in relation to sanitation in urban areas of low- and middle-income countries. We followed a multi-phased, theory-informed approach that included factor analysis and item response theory methods, as well as reliability and validity testing, to analyze cross-sectional data collected from women in two cities: Tiruchirappalli, India (N = 996) and Kampala, Uganda (N = 1,024). Through rigorous evaluation of conceptually grounded question (item) sets, we identify a set of valid, comprehensive scales. The Agency, Resources, and Institutional Structures for Sanitation-related Empowerment (ARISE) scales represent 16 sub-domains of sanitation-related empowerment, each of which can be used alone or in combination with others, as needed. The ARISE scales are the only set of psychometrically validated metrics for the measurement of women's empowerment in WASH. In addition to the scales, we provide six indices to assess women's direct experiences with sub-domains of sanitation-related empowerment, as well as validated item sets related to menstruation, which are available as optional add-on measures for those who menstruate. The ARISE scales and associated survey modules respond to an established need for an increased focus on empowerment in WASH. We provide researchers and implementers with tools to measure sub-constructs of empowerment in a valid and reliable way, to generate data for better targeting, design, implementation, and evaluation of strategies to improve women's empowerment in the context of urban sanitation at the program and policy level.

Valued Outcomes in the Cancer Experience (VOICE)™: Development and validation of a multidimensional measure of perceived control.

OBJECTIVE: Enhancing cancer patients' sense of control can positively impact psychological well-being. We developed and assessed the psychometric properties of Valued Outcomes in the Cancer Experience (VOICE)TM, a measure of patients' perceived control over key personal priorities within their cancer experience. METHODS: VOICE construction and testing were completed in three phases with separate participant samples: (1) item generation and initial item pool testing (N = 459), (2) scale refinement (N = 623), and (3) confirmatory validation (N = 515). RESULTS: A 21-item measure was developed that captures cancer patients' sense of control in seven key domains: (1) Purpose and Meaning, (2) Functional Capacity, (3) Longevity, (4) Quality Care, (5) Illness Knowledge, (6) Social Support, and (7) Financial Capability. VOICE demonstrated adequate internal consistency (full-scale α = 0.93; factor α = 0.67-0.89) and adequate to strong convergent and discriminatory validity. SIGNIFICANCE OF RESULTS: VOICE measures cancer patients' perceived control across a diverse range of personal priorities, creating a platform for elevating patient perspectives and identifying pathways to enhance patient well-being. VOICE is positioned to guide understanding of the patient experience and aid the development and evaluation of supportive care interventions to enhance well-being.

CancerSupportSource®-15+: development and evaluation of a short form of a distress screening program for cancer patients and survivors.

PURPOSE: CancerSupportSource® (CSS) is a distress screening program implemented at community-based organizations and hospitals nationwide. The 25-item CSS assesses distress across five domains, with capacity to screen for clinically significant depression and anxiety. This study examined psychometric properties of a shortened form to enhance screening opportunities when staff or patient burden considerations are significant. METHODS: Development and validation were completed in multiple phases. Item reduction decisions were made with 1436 cancer patients by assessing external/internal item quality and judging theoretical and practical implications of items. Pearson correlations and confirmatory factor analysis were conducted on a separate sample of 957 patients to corroborate psychometric properties and dimensionality of the shortened scale. Nonparametric receiver operating characteristic (ROC) curve analyses determined scoring thresholds for depression and anxiety risk scales. RESULTS: Scale refinement resulted in a 15-item short form plus one screening item assessing tobacco and substance use (CSS-15+). At least two items from each CSS domain were retained to preserve multidimensionality. In confirmatory analysis, the model explained 59% of the variance and demonstrated good fit. Correlation between CSS-15+ and 25-item CSS was 0.99, p < 0.001. Sensitivity of 2-item depression and 2-item anxiety risk scales in the confirmatory sample were 0.82 and 0.83, respectively. CONCLUSIONS: CSS-15+ is a brief, reliable, and valid multidimensional measure of distress. The measure retained excellent internal consistency (α = 0.94) and a stable factor structure. CSS-15+ is a practical and efficient screening tool for distress and risk for depression and anxiety among cancer patients and survivors, particularly in community-based settings.

Symptom Burden, Perceived Control, and Quality of Life Among Patients Living With Multiple Myeloma.

BACKGROUND: New therapies for multiple myeloma (MM) have improved survival rates but often expose patients to heightened toxicities and prolonged treatment, leading to increasing complications and side effects. We evaluated the association between symptom burden, perceived control over illness, and quality of life (QoL) among a national sample of patients with MM. METHODS: For this observational, cross-sectional study, we used data from the Cancer Experience Registry research initiative to examine symptom- and functioning-related concerns among 289 patients with MM across the illness trajectory. We applied hierarchical multiple linear regression analyses to explore associations between symptom burden and perceived control over illness with QoL indicators: depression, anxiety, and social satisfaction. RESULTS: In our sample, 73% of participants with MM reported currently receiving treatment; 39% experienced relapse; 56% received 1 to 2 autologous transplants, 10% received ≥3 autologous transplants, and 4% received allogeneic and autologous transplants; 30% had not received a stem cell transplant. Average time since diagnosis was 4.4 years. The most highly endorsed concerns included eating and nutrition (61%), physical activity (59%), moving around (56%), fatigue (55%), pain (52%), and sleep (46%). Only 27% believed they had control over their disease, whereas 48% perceived having control over the physical side effects of MM. Approximately one-third of the variance in anxiety and depression and nearly two-thirds of variance in social satisfaction were explained by sociodemographic, clinical, and symptom burden variables. Perceived control over illness significantly predicted depression and anxiety, but not social satisfaction. Our results highlight substantial concern among patients with MM about physical symptoms and function. Additionally, greater symptom burden significantly accounted for poorer QoL, and lower perceived control over illness was linked to depression and anxiety. CONCLUSIONS: Patients with MM and survivors experience substantive long-term QoL issues. Together, these findings point to the critical need for comprehensive symptom management, integrated palliative care, and enhancement of social and emotional support for individuals with MM.

CancerSupportSource®: validation of a revised multi-dimensional distress screening program for cancer patients and survivors.

PURPOSE: To facilitate access to and provision of psychosocial care to cancer patients in the community, the Cancer Support Community (CSC) developed CancerSupportSource® (CSS), an evidence-based psychosocial distress screening program. The current study examined the psychometric properties and multi-dimensionality of a revised 25-item version of CSS, and evaluated the scale's ability to identify individuals at risk for clinically significant levels of depression and anxiety. METHODS: CSS development and validation were completed in multiple phases. Exploratory factor analysis was completed with 1436 individuals diagnosed with cancer to examine scale dimensionality, and nonparametric receiver operating characteristic (ROC) curve analyses were used to determine scoring thresholds for depression and anxiety risk scales. Internal consistency reliability and convergent and discriminant validity were also examined. Confirmatory factor analysis and intraclass correlation coefficients were subsequently calculated with a separate sample of 1167 individuals to verify the scale factor structure and examine test-retest reliability. RESULTS: Five factors were identified and confirmed: (1) emotional well-being, (2) symptom burden and impact, (3) body image and healthy lifestyle, (4) health care team communication, and (5) relationships and intimacy. Psychometric evaluation of the total scale and factors revealed strong internal consistency reliability, test-retest reliability, and convergent and divergent validity. Sensitivity of CSS 2-item depression and 2-item anxiety risk scales were .91 and .92, respectively. CONCLUSIONS: Results indicate that CancerSupportSource is a reliable, valid, multi-dimensional distress screening program with the capacity to screen for those at risk for clinically significant levels of depression and anxiety.

Unintentional weight loss, its associated burden, and perceived weight status in people with cancer.

PURPOSE: Unintentional weight loss (UWL) is a prevalent problem in people with cancer and is associated with poorer psychosocial outcomes. A gap exists in understanding whether and how perceived and/or weight status impacts experiences of UWL. Thus, we sought to examine subjective experiences of UWL in people with cancer, and whether perceived and/or actual weight status impacts these experiences. METHODS: Participants were recruited through Cancer Support Community's Cancer Experience Registry® and related networks. Participants completed an online survey that included the FAACT Anorexia-Cachexia subscale, and 19 items that captured six themes related to "beliefs and concerns" (positive beliefs, psychosocial impact, physical impact, cancer outcomes, self-esteem, relationships with others). Perceived weight status (PWS) was assessed using a single item. Body mass index (BMI) was calculated using self-reported weight and height measurements. RESULTS: Of 326 respondents, 114 reported experiencing UWL. Over one-third misperceived their weight, with 29% perceiving weight status as below their BMI status. UWL in those with perceived weight status of overweight/obese was associated with positive beliefs. However, being underweight by BMI or perceiving oneself as underweight were both associated with greater concerns about weight loss. Perceived weight status of underweight compared to normal or overweight/obese weight status was associated with poorer psychosocial well-being, personal control, self-esteem, and relationships with others. CONCLUSION: In people with cancer, perceived weight status, rather than BMI, had greater impact on negative "beliefs and concerns" about UWL. Findings suggest assessment of both perceived and actual BMI to address the impact of UWL on psychosocial wellbeing.

Protocol for development and validation of instruments to measure women's empowerment in urban sanitation across countries in South Asia and Sub-Saharan Africa: the Agency, Resources and Institutional Structures for Sanitation-related Empowerment (ARISE) scales.

INTRODUCTION: Despite an increasing emphasis on gender and empowerment in water, sanitation and hygiene (WaSH) programmes, no rigorously validated survey instruments exist for measuring empowerment within the WaSH sector. Our objective is to develop and validate quantitative survey instruments to measure women's empowerment in relation to sanitation in urban areas of low-income and middle-income countries. METHODS AND ANALYSIS: We are developing the Agency, Resources and Institutional Structures for Sanitation-related Empowerment scales through a process that involves three phases: item development; scale development and initial validation and scale evaluation and further validation. The first phase includes domain specification, item generation, face validity and content validity assessment and item refinement. The second phase involves a second round of face validity and content validity assessment, followed by survey implementation in two cities (Tiruchirappalli, India and Kampala, Uganda) and data analysis involving factor analysis and item response theory approaches as well as reliability and validity testing. The third phase involves a final round of face validity and content validity assessment, followed by survey implementation in three additional cities (Narsapur and Warangal, India and Lusaka, Zambia) and statistical analysis using similar approaches as in phase 2 for further validation. ETHICS AND DISSEMINATION: Ethics approvals have been received from the Emory University Institutional Review Board (USA); Azim Premji University and Indian Institute of Health Management Research Institutional Review Boards (India); Makerere University School of Health Sciences Research and Ethics Committee (Uganda); and ERES Converge Institutional Review Board (Zambia). The study team will share findings with key stakeholders to inform programming activities and will publish results in peer-reviewed journals.

Patient-Reported Communication With Their Health Care Team About New Treatment Options for Chronic Lymphocytic Leukemia.

Chronic lymphocytic leukemia (CLL) often requires consideration of multiple treatment options. Shared decision-making (SDM) is important, given the availability of increasingly novel therapies; however, patient-provider treatment conversations vary. We examined relationships between patient-provider discussions of new CLL treatment options and sociodemographic, clinical, and patient-provider communication variables among 187 CLL patients enrolled in Cancer Support Community's Cancer Experience Registry. Factors significantly associated with self-reports of whether patients' providers discussed new CLL treatment options with them were examined using χ2 tests, t tests, and hierarchical logistic regression. Fifty-eight percent of patients reported discussing new treatment options with their doctor. Patients with higher education were 3 times more likely to discuss new treatment options relative to those with lower education (OR = 3.06, P < .05). Patients who experienced a cancer recurrence were 7 times more likely to discuss new treatment options compared to those who had not (OR = 7.01, P < .05). Findings offer insights into the correlates of patient-provider discussions of new CLL treatment options. As novel therapies are incorporated into standards of care, opportunities exist for providers to improve patient care through enhanced SDM.

Development and validation of the HIV adolescent readiness for transition scale (HARTS) in South Africa.

INTRODUCTION: Adolescents living with perinatally acquired HIV have low rates of retention in care and viral suppression after the transition from paediatric to adult care. In this study, we developed and validated a tool to identify adolescent transition readiness. METHODS: We developed the HIV Adolescent Readiness for Transition Scale (HARTS) from June 2016 to May 2019 by iteratively adapting existing transition readiness scales for other chronic illnesses by conducting focus groups with 11 healthcare providers and 20 adolescents in South Africa. We administered a preliminary questionnaire to 131 adolescents to determine psychometric properties and assess test-retest variability. We used confirmatory factor analysis to verify the proposed scale structure using the underlying variable approach. We correlated responses to self-described transition readiness and age using linear regression. We subsequently validated the scale by prospectively administering it to 199 adolescents in a second South African setting before their transition. We then used multivariable logistic regression to assess the effects of the HARTS and relevant socio-behavioural covariates on viral suppression one year after transition. RESULTS: We identified four domains relevant to transition readiness: disclosure, health navigation, self-advocacy and health literacy. Fifteen questions with a significant factor loading of 0.3 to 0.9 were identified. No significant test-retest variability was seen among 10% of participants. Positive correlations with self-described transition readiness were significant with the overall HARTS and domains of health navigation, self-advocacy and health literacy. In the prospective analysis, for adolescents not using drugs, each 10-point increase in the HARTS was associated with 0.62 odds of viral failure (95% CI 0.45 to 0.86; p = 0.004). The individual domains of self-advocacy (AOR 0.56; 95% CI 0.33 to 0.94; p = 0.029), disclosure (AOR 0.02; 95% CI 0.01 to 0.25; p = 0.002), health navigation (AOR 0.51; 95%CI 0.25 to 1.02; p = 0.056) and health literacy (AOR 0.37; 95% CI 0.10 to 1.30; p = 0.121) were associated with viral failure adjusting for age at antiretroviral therapy initiation, ART regimen, sex, disclosure status, and alcohol use in both analyses. CONCLUSIONS: The HARTS is a validated scale that can be used to identify which adolescents may require additional interventions prior to transitioning to adult care to improve viral suppression after transition.

Assessing Women's Menstruation Concerns and Experiences in Rural India: Development and Validation of a Menstrual Insecurity Measure.

Qualitative research has documented menstruator's challenges, particularly in water and sanitation poor environments, but quantitative assessment is limited. We created and validated a culturally-grounded measure of Menstrual Insecurity to assess women's menstruation-related concerns and negative experiences. With cross-sectional data from 878 menstruating women in rural Odisha, India, we carried out Exploratory (EFA) and Confirmatory (CFA) Factor Analyses to reduce a 40-item pool and identify and confirm the scale factor structure. A 19-item, five factor model best fit the data (EFA: root mean square error of approximation (RMSEA) = 0.027; comparative fit index (CFI) = 0.994; Tucker-Lewis index (TLI) = 0.989; CFA: RMSEA = 0.058; CFI = 0.937; TLI = 0.925). Sub-scales included: Management, Menstrual Cycle Concerns, Symptoms, Restrictions, and Menstruation-Related Bodily Concerns. Those without access to a functional latrine, enclosed bathing space, water source within their compound, or who used reusable cloth had significantly higher overall Menstrual Insecurity scores (greater insecurity) than those with these facilities or using disposable pads. Post-hoc exploratory analysis found that women reporting experiencing tension at menstrual onset or difficulty doing work had significantly higher Menstrual Insecurity scores. This validated tool is useful for measuring Menstrual Insecurity, assessing health inequities and correlates of Menstrual Insecurity, and informing program design.