"Let him die. He caused it": A qualitative study on cancer stigma in Tanzania.

Cancer stigma presents a critical barrier to care seeking, contributing to delayed presentation and poor cancer outcomes worldwide. The burden of cancer in Tanzania is on the rise, with cancer being the third-leading cause of death in the country. Despite rising incidence and poor outcomes of cancer, cancer-related stigma interventions have received low prioritization. There is a need for sound research that focuses on understanding attitudes driving stigma, its impact on care-seeking and treatment adherence, and intervention models to reduce stigma. We used a cross-sectional qualitative study design. We administered three open-ended qualitative questions to 140 adults newly diagnosed with cancer in Moshi, Tanzania. The questions explored common attitudes toward people with cancer, the perceived impact of cancer-related stigma on care engagement, and ideas for reducing cancer stigma. Patients were recruited during routine appointments at the Cancer Center at Kilimanjaro Christian Medical Center. Data were analyzed using a team-based, applied thematic approach and NVivo 12 software. All participants described stigma as a significant challenge for treatment and receiving support from their social networks. Perceptions of financial burden, misconceptions about cancer, such as the belief that it is contagious, and fear of death, were common attitudes driving cancer stigma. Most participants feared that symptoms would prevent them from being able to work and that the cost of cancer care would drive away loved ones. Stigma was not a ubiquitous response, as some participants reported increased care and social support from family members after a cancer diagnosis. Experiences of stigma contributed to feelings of shame, fear of burdening the family, reduced resources to access treatment, and disengagement from care. Common substitutes to medical therapies included religious interventions and traditional medicine, perceived as less expensive and less stigmatizing. Many participants felt they would benefit from improved financial support, professional counseling, and education for families and communities to reduce stigmatizing attitudes and enhance social support. There is a need for intervention studies focused on improving cancer literacy, community advocacy to reduce cancer stigma, and increasing emotional and practical support for people with cancer and their families. There is also a clear need for policy efforts to make cancer care more affordable and accessible to reduce the financial burden on patients and families.

Culturally-informed adaptation and psychometric properties of the Cataldo Cancer Stigma Scale in Northern Tanzania.

BACKGROUND: Cancer-related stigma impacts patients' emotional health, care engagement, and cancer outcomes, but few measures of cancer stigma exist. We culturally adapted and assessed psychometric properties of the Cataldo Cancer Stigma Scale (CCSS) in Tanzania. METHODS: We administered the CCSS short version (21 items), plus 12 locally-derived items, to 146 adult cancer patients. We conducted exploratory factor analysis, examined internal consistency/reliability, and assessed convergent validity with relevant measures. RESULTS: We identified a 17-item cancer stigma scale with strong psychometric properties and four subscales: enacted stigma, shame and blame, internalized stigma, and disclosure concerns. Stigma was rare except for disclosure concerns. Stigma was positively associated with depression and anxiety and negatively associated with social support, quality of life, and illness acceptance. CONCLUSIONS: The scale provides valid, culturally-informed measurement of cancer stigma in Tanzania. Future studies should assess associations with care engagement, which will inform interventions to reduce stigma and improve outcomes.

Predictive Factors in Identifying Pediatric Patients at Risk of Diagnostically Limited Videofluoroscopic Swallow Studies.

Objective: Videofluoroscopic swallow studies (VFSS) are highly effective in characterizing pediatric dysphagia, but they are time- and resource-intensive, and necessitate the use of radiation. Identifying patients unlikely to benefit from VFSS is crucial to improving patient safety and resource allocation. The purpose of this study was to assess whether the ability of a patient to consume at least 0.5 oz by mouth is a reliable indicator of their ability to produce a diagnostically useful VFSS. Study Design: Retrospective chart review. Methods: Clinical data of pediatric patients aged 0 to 18 years, who underwent VFSS at a tertiary academic medical center from 2014 to 2021 were analyzed. Results: Regardless of whether due to mechanical dysphagia or oral aversion, an inability to consume at least 0.5 oz of any texture by mouth at home was not found to be associated with nondiagnostic VFSS. Age was found to have an effect on VFSS utility with toddlers having higher odds of nondiagnostic VFSS compared to children and adolescents. Overall, there was no significant interaction between the ability to take at least 0.5 oz and age group. Gastrointestinal (GI) and neuromuscular comorbidities were also associated with clinically useful swallow studies. Conclusions and Relevance: Clinicians should consider several factors, including age, at-home intake by mouth, and comorbidities such as neuromuscular and GI disorders, as they decide whether to order a VFSS.

Comparative implementation-effectiveness of three strategies to perform hearing screening among older adults in primary care clinics: study design and protocol.

BACKGROUND: The burden of hearing loss among older adults could be mitigated with appropriate care. This study compares implementation of three hearing screening strategies in primary care, and examines the reliability and validity of patient self-assessment, primary care providers (PCP) and diagnostic audiologists in the identification of 'red flag' conditions (those conditions that may require medical consultation and/or intervention). METHODS: Six primary care practices will implement one of three screening strategies (2 practices per strategy) with 660 patients (220 per strategy) ages 65-75 years with no history of hearing aid use or diagnosis of hearing loss. Strategies differ on the location and use of PCP encouragement to complete a telephone-based hearing screen (tele-HS). Group 1: instructions for tele-HS to complete at home and educational materials on warning signs and consequences of hearing loss. Group 2: PCP counseling/encouragement on importance of hearing screening, instructions to take the tele-HS from home, educational materials. Group 3: PCP counseling/encouragement, in-office tele-HS, and educational materials. Patients from all groups who fail the tele-HS will be referred for diagnostic audiological testing and medical evaluation, and complete a self-assessment of red flag conditions at this follow-up appointment. Due to the expected low incidence of ear disease in the PCP cohort, we will enroll a complementary population of patients (N = 500) from selected otolaryngology head and neck surgery clinics in a national practice-based research network to increase the likelihood of occurrence of medical conditions that might contraindicate hearing aid fitting. The primary outcome is the proportion of patients who complete the tele-HS within 2 months of the PCP appointment comparing Group 3 (PCP encouragement, in-office tele-HS, education) versus Groups 2 and 1 (education and tele-HS at home, with and without PCP encouragement, respectively). The several secondary outcomes include direct and indirect costs, patient, family and provider attitudes of hearing healthcare, and accuracy of red flag condition evaluations compared with expert medical assessment by an otolaryngology provider. DISCUSSION: Determining the relative effectiveness of three different strategies for hearing screening in primary care and the assessment accuracy of red flag conditions can each lead to practice and policy changes that will reduce individual, family and societal burden from hearing loss among older adults. TRIAL REGISTRATION: Clinicaltrials.gov: NCT02928107; 10/10/2016 protocol version 1.