RESUMO
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.
RESUMO
PURPOSE: The 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. METHODS: A 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. RESULTS: Surveys 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. CONCLUSION: A multidisciplinary needs assessment of local stakeholders identified a need for and acceptability of an mHealth-based US-guided biopsy training program in Nigeria.