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Abstract Background The majority of non-metastatic breast cancer patients in sub-Saharan Africa are recommended to have mastectomy. The impact of mastectomy on a predominantly young African patient population requires evaluation. The BREAST-Q is a validated patient-reported outcome measure of quality-of-life following breast surgery that has been translated into 30 languages-none in Africa. This study aimed to translate and assess the psychometric properties of the mastectomy module of the BREAST-Q for use in Nigeria. Methods The BREAST-Q mastectomy module was translated from English to Yoruba and its psychometric properties assessed using best practice guidelines. Translation was performed in 4 steps: forward translation (x2), back translation, back translation review, and cognitive interviews with post-mastectomy patients. The translated BREAST-Q instrument was administered to post-mastectomy patients (n = 21) alongside the EORTC-QLQ BR23 to evaluate construct validity. Test-retest reliability was evaluated using intraclass correlation coefficients (ICC); surveys were re-administered 4 weeks apart. Results The translation process identified English phrases not amenable to direct translation, including “emotionally healthy” and descriptions of pain (“nagging,” “throbbing,” “sharp”). Translations were amended to reflect local context and question intent. During cognitive interviews, patients provided suggestions to simplify complex phrases, e.g. “discomfort in your breast area.”. Internal consistency within scales was over 0.70 for psychosocial wellbeing (α = 0.84–0.87), sexual wellbeing (α = 0.98–0.99), physical wellbeing in chest (α = 0.84–0.86), and satisfaction with care (α = 0.89–0.93). ICC for test-retest reliability was moderate (0.46–0.63). Conclusions The Yoruba version of the BREAST-Q mastectomy module presents a unique opportunity to adequately capture the experiences of Nigerian women post mastectomy. This instrument is being used in a pilot study of Nigerian patients to identify targets for intervention to improve the patient experience and compliance with breast cancer surgery.

Abstract Objectives The Anal Cancer High-grade squamous intraepithelial lesions (HSIL) Outcomes Research (ANCHOR) Health-Related Symptom Index (A-HRSI) is a 25-item measure that assesses physical symptoms and impacts, and psychological symptoms. To promote generalizability and equity in the capture of these concepts in Spanish-speaking participants, we linguistically validated a Spanish version of A-HRSI. Methods Following independent forward translation and reconciliation of A-HRSI from English to Spanish, two rounds of cognitive interviews were completed with ANCHOR participants who had been diagnosed with anal HSIL in the prior nine months and preferred delivery of their healthcare in Spanish. Interviews were coded to highlight any items and concepts that were reported as being difficult for any reason by ≥ 3 participants, with such items revised during a research team panel discussion and tested in a second round of interviews if applicable. Results Seventeen participants representing 8 nationalities were enrolled (Round 1 n=10, Round 2 n=7); 7 participants reported not completing high school (41.2%). No difficulties were reported with respect to the theoretical concepts measured by A-HRSI. We made modifications to the Spanish translation of eight items and two response option terms in cases where participants had difficulty understanding a term, experienced problems in discriminating between terms, or preferred the use of an alternative term to represent the concept(s). Conclusion The Spanish version of A-HRSI is a linguistically valid tool that can be used to assess physical symptoms, impacts, and psychological symptoms related to anal HSIL. Plain English Summary Language is a tremendous barrier to enrolling patients to clinical trials. The anal cancer high-grade squamous intraepithelial lesions (HSIL) outcomes research [ANCHOR] trial is a randomized clinical trial that recently established that the treatment of anal HSIL, versus active monitoring, is effective in reducing incidence of anal cancer in persons living with HIV (PLWH). The ANCHOR Health-Related Symptom Index (A-HRSI) is a 25-item patient-reported outcomes measure that was developed to assess physical symptoms, physical impacts, and psychological symptoms related to anal HSIL. As approximately 10% of ANCHOR participants preferred the delivery of their healthcare in Spanish, the purpose of the present study was to linguistically validate a Spanish version of A-HRSI. Based on feedback from interviews with 17 participants from the ANCHOR trial who had been diagnosed with anal HSIL in the prior nine months and preferred delivery of their healthcare in Spanish, we made modifications to the Spanish translation of eight items and two response option terms in cases where participants had difficulty understanding a term, experienced problems in discriminating between terms, or preferred the use of an alternative term to represent the concept(s). The Spanish version of A-HRSI is a linguistically valid tool that can be used to assess physical symptoms, impacts, and psychological symptoms related to anal HSIL as part of clinical trials or routine care.

PURPOSEThere is an urgent need to address the growing global cancer burden in the context of complex disaster events, which both disrupt access to oncology care and facilitate carcinogenic exposures. Older adults (65 years and older) are a growing population with multifaceted care needs, making them especially vulnerable to disasters. The objective of this scoping review is to characterize the state of the literature concerning older adult cancer–related outcomes and oncologic care after a disaster event.METHODSA search was conducted in PubMed and Web of Science. Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines for scoping reviews, articles were extracted and screened for inclusion. Eligible articles were summarized using descriptive and thematic analyses.RESULTSThirty-five studies met all criteria for full-text review. The majority focused on technological disasters (60%, n = 21), followed by climate-amplified disasters (28.6%, n = 10) and geophysical disasters (11.4%, n = 4). Thematic analysis classified the current evidence into three major categories: (1) studies concerned with carcinogenic exposure and cancer incidence related to the disaster event, (2) studies examining changes in access to cancer care and cancer treatment disruptions as a result of the disaster event, and (3) studies exploring the psychosocial experiences of patients with cancer affected by a disaster event. Few studies focused on older adults specifically, and most of the current evidence focuses on disasters in the United States or Japan.CONCLUSIONOlder adult cancer outcomes after a disaster event are understudied. Current evidence suggests that disasters worsen cancer-related outcomes among older adults by disrupting continuity of care and access to timely treatment. There is a need for prospective longitudinal studies following older adult populations postdisaster and studies focused on disasters in low- and middle-income country contexts.

Purpose. To evaluate patient perceptions of a Web-based decision aid for the treatment of localized prostate cancer. Methods. We assessed patient perceptions of a multicomponent, Web-based decision aid with a preference elicitation/values clarification exercise using adaptive conjoint analysis, the generation of a summary report, and provision of information about localized prostate cancer treatment options. Using a think-aloud approach, we conducted 21 cognitive interviews with prostate cancer patients presented with the decision aid prior to seeing their urologist. Thematic content analysis was used to examine patient perceptions of the tool’s components and content prior to engaging in shared decision making with their clinician. Results. Five themes were identified: 1) patients had some negative emotional reactions to the tool, pointing out what they perceived to be unnecessarily negative framing and language used; 2) patients were forced to stop and think about preferences while going through the tool and found this deliberation to be useful; 3) patients were confused by the tool; 4) patients tried to discern the intent of the conjoint analysis questions; and 5) there was a disconnect between patients’ negative reactions while using the tool and a contrasting general satisfaction with the final “values profile” created by the tool. Conclusions. Studies are needed to explore the disconnect between patients’ expressing negative reactions while going through some components of decision aids but satisfaction with the final output. In particular, we hypothesize that this effect might be explained by cognitive biases such as choice-supportive bias, hindsight bias, and the “IKEA effect.” This is one of the first projects to elicit patient reactions while they were completing a decision aid, and we recommend further similar, qualitative postprocess evaluation studies. Highlights We explored perceptions of a decision aid with education about localized prostate cancer treatment and preference elicitation using adaptive conjoint analysis. Patients found the tool useful but were also confused by it, tried to discern the intent of the questions, and expressed negative emotional reactions. In particular, there was a disconnect between patients’ negative reactions while using the tool and general satisfaction with the final values profile generated by the tool, which is an area for future research.

Abstract Background Advance care planning, the process through which patient values and goals are explored and documented, is a core quality indicator in cancer care. However, patient values are predominantly elicited at the end of life; patient values earlier in serious illness are not clearly delineated. The objective of this analysis is to assess the content of patient-verified summaries of health-related values among newly diagnosed cancer outpatients in order to develop a theoretical framework to guide future values discussions and optimize person-centered oncologic care. Methods Values summaries among patients with gastrointestinal (GI) cancers or myelodysplastic syndrome (MDS) were extracted from the medical record. Modified grounded theory analysis included interdisciplinary team coding of values summaries to identify key domains; code categorization; and identification of thematic constructs during successive consensus meetings. A final round of coding stratified themes by disease type. Results Analysis of 128 patient values summary documents from 67 patients (gastrointestinal [GI] cancers, n = 49; myelodysplastic syndrome [MDS], n = 18) generated 115 codes across 12 categories. Resultant themes demonstrated patients’ focus on retaining agency, personhood and interpersonal connection amidst practical and existential disruption caused by cancer. Themes coalesced into a theoretical framework with 5 sequenced constructs beginning with the cancer diagnosis, leading to 3 nesting constructs of individual identity (character), interpersonal (communication) preferences and needs, and social identity (connection), signifying sources of meaning and fulfillment. Values differences between GI cancer and MDS patients—including greater focus on normalcy, prognosis, and maintaining professional life among GI patients—reflected the distinct therapeutic options and prognoses across these disease groups. Conclusions Patient values reflect goals of meaning-making and fulfillment through individual agency and interpersonal supports in the setting of a newly diagnosed cancer. Early, nurse-led values discussions provide important and patient-specific data that are informative and likely actionable by clinicians in the delivery of person-centered care. Values can also facilitate discussions between patients and families and clarify patient preferences.

Summary: Background: The importance of deriving benefit and meaning has been identified among cancer caregivers, but this has yet to be examined in the context of rare cancers. We sought to characterize unmet needs and experiences of caregivers of patients with Erdheim-Chester disease (ECD) and other histiocytic neoplasms (HN) and to identify factors associated with finding benefit and meaning-making in providing care for patients with rare cancers. Methods: Caregivers of patients with ECD and other HN completed quantitative surveys. Linear univariable regression modeling examined associations between unmet needs, social and family support, and intolerance of uncertainty with benefit finding and meaning-making. A subset participated in qualitative interviews assessing experiences of rare cancer caregiving that were analyzed with applied thematic analysis (NCT039900428). Findings: Of caregivers (N = 92, M = 54 years old, 68% female) of patients with ECD (75%) and other HN (25%), 78% reported moderately or severely unmet support needs, most frequently informational (58%) and psychological/emotional (66%) needs. Caregivers with unmet informational, psychological/emotional, and social support needs, difficulty tolerating uncertainty, a longer duration of the patient's illness, lower social support, more family conflict, and higher anxiety and depression symptoms demonstrated less benefit finding and meaning-making (ps

PURPOSEThe incidence of breast cancer is rising in Nigeria, and one major barrier to care is the lack of affordable and appropriate breast cancer diagnosis by ultrasound (US)–guided biopsy. The prohibitive cost of US devices limits their availability in low- and middle-income countries. The emergence of mobile health (mHealth) imaging devices may offer an acceptable low-cost alternative. The purpose of this research was to perform a comprehensive needs assessment to understand knowledge, use, training needs, and attitudes as regards image-guided biopsy in Nigeria to inform the development of an mHealth-based US-guided biopsy training program.METHODSA multistakeholder needs assessment was conducted at the Sixth Annual African Research Group for Oncology Symposium. Voluntary anonymous surveys were administered to all attendees. A subset of attendees (ie, surgeons, radiologists, pathologists, and nurses) participated in six focus groups. Survey items and interview guides were developed collaboratively with local and international input.RESULTSSurveys focusing on use, training needs, and attitudes regarding US-guided biopsies were completed with a 55% response rate (n = 54 of 98) among participants from 22 hospitals across Nigeria. Respondents expressed dissatisfaction with the way breast biopsies were currently performed at their hospitals and high interest in having their institution participate in a US-guided biopsy training program. Focus group participants (n = 37) identified challenges to performing US-guided procedures, including equipment functionality and cost, staff training, and access to consumables. Groups brainstormed the design of an mHealth US-guided biopsy training program, preferring a train-the-trainer format combining in-person teaching with independent modules.CONCLUSIONA multidisciplinary needs assessment of local stakeholders identified a need for and acceptability of an mHealth-based US-guided biopsy training program in Nigeria.

Social scientists have advocated for the use of participatory research methods for Global Health project design and planning. However, community-engaged approaches can be time and resource-intensive. This article proposes a feasible framework for conducting a participatory needs assessment in time-limited settings using multiple, triangulated qualitative methods. This framework is outlined through a case study: a participatory needs assessment to inform the design of an ultrasound-guided biopsy training program in Nigeria. Breast cancer is the leading cause of death for Nigerian women and most cases in Nigeria are diagnosed at an advanced stage; timely diagnosis is impeded by fractious referral pathways, costly imaging equipment, and limited access outside urban centers. The project involved participant observation, surveys, and focus groups at the African Research Group for Oncology (ARGO) in Ile-Ife, Nigeria. Through this timely research and engagement, participants spoke about diagnostic challenges, institutional power dynamics, and infrastructure considerations for program implementation.

Adolescents and young adults (AYAs) require a multidisciplinary approach to cancer care due to their complex biopsychosocial situations and varied developmental maturity. Currently, age and diagnosis determine referral to pediatric or adult oncology, with differing treatment paradigms and service utilization patterns, contributing to suboptimal improvements in outcomes. Understanding the unique perspectives of AYAs is essential to designing patient-centered AYA services. Thus, we conducted six focus groups with AYAs (n = 25) treated by medical or pediatric oncologists to evaluate: (1) the unique experiences of cancer care as an AYA; (2) AYA-specific information needs and communication preferences; and (3) recommendations for service provision, delivery and accommodations for AYAs. Transcripts were analyzed using inductive thematic content analysis and identified six major themes to inform clinically-actionable recommendations and the development of a patient-reported outcome measure: (1) AYAs experience social isolation and loss of independence; (2) AYAs have an uncertain sense of the future and need conversations around survivorship and long-term and late effects; (3) AYAs desire greater control over discussions with their care team; (4) AYAs need additional navigational and social/caregiver supports; (5) AYAs prefer an inclusive AYA space in the hospital; and (6) LGBTQ+ patients experience distinct concerns as AYA cancer patients. These will form the basis for specific and tailored clinical recommendations to improve AYA cancer care delivery.

BackgroundThe epidemiology of trachoma in several Pacific Islands differs from other endemic settings, in that there is a high prevalence of clinical signs of trachoma, particularly trachomatous inflammation-follicular (TF), but few cases of trichiasis and limited evidence of ocular chlamydial infection. This so-called "Pacific enigma" has led to uncertainty regarding the appropriate public health response. In 2019 alongside Nauru's national trachoma population survey, we performed bacteriological and serological assessments of children to better understand the typology of trachoma and to determine whether there is a need for trachoma interventions.MethodsWe used two-stage cluster sampling, examining residents aged ≥1 year and collecting household-level water, sanitation, and hygiene (WASH) variables. Children aged 1-9 years provided conjunctival swabs and finger-prick dried blood spots to investigate the presence of Chlamydia trachomatis nucleic acid and anti-Pgp3 antibodies, respectively.Principal findingsIn 818 participants aged 1-9 years, the age-adjusted TF prevalence was 21.8% (95% CI 15.2-26.2%); ocular C. trachomatis prevalence was 34.5% (95% CI 30.6-38.9), and anti-Pgp3 antibody prevalence was 32.1% (95% CI 28.4%-36.3%). The age- and gender-adjusted prevalence of trichiasis in ≥15-year-olds was 0.3% (95% CI 0.00-0.85), but no individual with trichiasis had trachomatous scarring (TS). Multivariable analysis showed an association between age and both TF (OR per year of age 1.3 [95% CI 1.2-1.4]) and anti-Pgp3 positivity (OR 1.2 [95% CI 1.2-1.3]). There were high rates of access to water and sanitation and no WASH variable was associated with the presence of TF.ConclusionsTF, nucleic acid, and age-specific antibody prevalence collectively indicate that high levels of C. trachomatis transmission among children present a high risk of ocular damage due to trachoma. The absence of trichiasis with trachomatous scarring suggest a relatively recent increase in transmission intensity.

This article describes the results of a multi-year, multi-state evaluation of the effectiveness of an early childhood prevention initiative that translates resilience research into practice. Targeted to children in preschool through the early elementary grades, the intervention comprises teacher training, a year-long classroom curriculum, original materials and music, and a companion parent education program. The evaluation methodology evolved from pre-experimental to true experimental design and encompassed multiple program replications. Child outcome data indicate that the intervention is effective in both: (a) strengthening children's social-emotional competence and positive coping skills and (b) suppressing the development of antisocial, aggressive behavior. The systematic process and outcome evaluation of this prevention initiative fills a gap by providing hard evidence of the effectiveness of a developmentally appropriate, research-based intervention for young children. [ABSTRACT FROM AUTHOR]

Abstract Objective: Recent surveys identified trachomatous inflammation – follicular (TF) at endemic levels in the Torres Strait Islands; however, local health staff do not report trachomatous trichiasis (TT) in adults. We undertook a cross‐sectional survey involving eye examination and microbiological testing to better understand this disconnect. Methods: We examined 169 of 207 (82%) residents and collected ocular swabs for polymerase chain reaction (PCR) testing for Chlamydia trachomatis. Other viral PCR tests and bacterial culture were also performed. Results: TF prevalence in children aged 5–9 years was 23% (7/30). No ocular C. trachomatis was identified by PCR. For the 72 participants (43%) with follicles, bacterial culture was positive for 11 (15%) individuals. No individual had trachomatous trichiasis. Conclusions: Follicular conjunctivitis consistent with TF was prevalent but ocular C. trachomatis and cicatricial trachoma were absent. Non‐chlamydial infections or environmental causes of follicular conjunctivitis may be causing TF in this community. Implications for public health: In similar settings, reliance on simplified clinical assessment alone may lead to an overestimation of the public health problem posed by trachoma. Consideration should be given to incorporating C. trachomatis PCR, and in certain settings, a detailed clinical exam could be performed by an experienced ophthalmologist during prevalence surveys.

BackgroundAccurate self-reported symptomatic toxicity documentation via the Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) is essential throughout cancer treatment to ensure safety and understand therapeutic efficacy. However, the capture of accurate toxicities from patients undergoing radiation therapy is challenging because this is generally provided only at the time of scheduled visits. ObjectiveThis study seeks to establish the usability and feasibility of a mobile PRO-CTCAE Administration System (mPROS) to capture toxicities related to radiation therapy. MethodsEnglish-speaking adult patients who were undergoing radiation therapy for cancer were enrolled and given a brief demonstration of the Say All Your Symptoms (SAYS) and Symptom Tracking Entry Program (STEP) interfaces of the mPROS app, followed by a patient-use phase where patient actions were observed as they navigated mPROS to enter toxicities. Patient feedback was captured via a semistructured interview and brief questionnaire. ResultsWe enrolled 25 patients (age: mean 60.7 years; females: n=13, 52%; White patients: n=13; 52%; non-Hispanic patients: n=19, 76%; college graduates: n=17, 68%). Patients almost equally preferred the SAYS (n=14, 56%) or STEP (n=11, 44%) interfaces, with 21 patients (84%) agreeing that they would use mPROS to report their symptoms to their health care team and 19 patients (76%) agreeing that they would recommend mPROS to others. ConclusionsThe mPROS app is usable and feasible for facilitating the patient reporting of radiation therapy–related symptomatic toxicities. A revised version of mPROS that incorporates patient input and includes electronic health record integration is being developed and validated as part of a multicenter trial.

BackgroundTechnology acceptability and usage surveys (TAUS) are brief questionnaires that measure technology comfort, typical daily use, and access in a population. However, current measures are not adapted to low- and middle-income country (LMIC) contexts. ObjectiveThe objective of this pilot study was to develop a TAUS that could be used to inform the implementation of a mobile health (mHealth) intervention in Nigeria. MethodsA literature review of validated technology comfort and usage scales was conducted to identify candidate items. The draft measure was reviewed for face validity by an expert panel comprised of clinicians and researchers with cultural, methodological, and clinical expertise. The measure was piloted by radiologists at an oncology symposium in Nigeria. ResultsAfter expert review, the final measure included 18 items organized into 3 domains: (1) comfort with using mobile applications, (2) reliability of internet or electricity, and (3) attitudes toward using computers or mobile applications in clinical practice. The pilot sample (n=16) reported high levels of comfort and acceptability toward using mHealth applications in the clinical setting but faced numerous infrastructure challenges. ConclusionsPilot results indicate that the TAUS may be a feasible and appropriate measure for assessing technology usage and acceptability in LMIC clinical contexts. Dedicating a domain to technology infrastructure and access yielded valuable insights for program implementation.

Parental care is critical for offspring survival in many species. However, parental behaviors have been lost in roughly 1% of avian species known as the obligate brood parasites. To shed light on molecular and neurobiological mechanisms mediating brood parasitic behavior, we compared brain gene expression patterns between two brood parasitic species and one closely related non-parasitic Icterid (blackbird) species. Our analyses focused on gene expression changes specifically in the preoptic area (POA), a brain region known to play a critical role in parental behavior across vertebrates. Using comparative transcriptomic approaches, we identified gene expression patterns associated with brood parasitism. We evaluated three non-mutually exclusive alternatives for the evolution of brood parasitism: (1) retention of juvenile-like (neotenic) gene expression, (2) reduced expression of maternal care-related genes in the POA, and/or (3) increased expression of genes inhibiting maternal care. We find evidence for neotenic expression patterns in both species of parasitic cowbirds as compared to maternal, non-parasites. In addition, we observed differential expression in a number of genes with previously established roles in mediating maternal care. Together, these results provide the first insight into transcriptomic and genetic mechanisms underlying the loss of maternal behavior in avian brood parasites.

Avian brood parasites do not raise their own young. Rather, they leave eggs and offspring in nests of other species. Finding potential nests to parasitize is mostly up to the female and requires enhanced spatial memory as the female must remember nest locations as well as whether each located nest is in the nest building, incubation or offspring provisioning stage. In many cases, enhancement of ecologically relevant spatial memory is associated with larger hippocampal volume compared to the sex, or a species, that does not have similar demand for spatial memory. Female brown-headed cowbirds (Molothrus ater), a parasitic species ubiquitous across North America, have greater hippocampus volume and new neuron recruitment as compared to male cowbirds and non-parasitic species. The present study reveals female cowbirds display greater new neuron recruitment compared to males specifically in the rostral hippocampal subdivision. It is still unclear, however, whether the function of new cells in the rostral hippocampus is related to sex differences in spatial memory. These data reveal the avian hippocampus exhibits subdivisions in new cell recruitment but it remains unclear whether these subdivisions serve distinct functions in spatial memory and other hippocampal functions.