Improving Health-Related Quality of Life Communication Between AYA Oncology Patients and Clinicians: A Patient-Centered Intervention - A cancer diagnosis directly threatens health-related quality of life (HRQOL) for, adolescents and young adults (AYAs). Nearly 60% of AYAs undergoing cancer treatment report a need for HRQOL counseling, yet this need is rarely fully met. This gap in care leaves patients at high risk for making uninformed decisions that can negatively impact short and long-term HRQOL. Although national guidelines advise clinician responsibility for discussing HRQOL, clinicians rarely engage in these conversations. The proposed study serves as a first step towards improving HRQOL outcomes for AYA cancer patients and survivors by developing an intervention to 1) provide individualized, efficient, patient-centered care and 2) enhance patient-clinician communication. Dr. Frederick will complete formal didactic coursework, workshops, and career development programs focused on behavioral intervention science, mixed methods analysis, and clinical trial conduct, that will prepare her to achieve this goal. She is guided by a robust mentorship team consisting of Primary Mentor, Dr. Freyer (AYA oncology, quantitative research, clinical trials); Co-Mentor, Dr. Quinn (AYA cancer care, mixed methods research, intervention science); and Co-Mentor, Dr. Bober (HRQOL in cancer, qualitative methods, intervention science). This team is supported by a scientific advisory committee with expertise in implementation science, technology-based communication interventions, and mHealth. In addition, Dr. Frederick will have access to the abundant resources of Connecticut Children’s and the University of Connecticut School of Medicine. More specifically, the proposed project will develop, refine, and assess proof-of-concept of ReSPECT, a novel, patient-centered, web-based intervention that allows AYAs to discreetly communicate HRQOL questions and concerns to their oncology clinicians and offers a time-saving strategy for clinicians to assess patient need and individualize counsel. ReSPECT consists of 3 parts: (1) an AYA-centered pre-visit questionnaire (PVQ) to alert clinicians to a patient’s HRQOL questions/concerns, (2) targeted patient education based on PVQ topic selection, and (3) clinician-centered guidance for addressing specific HRQOL concerns. Stakeholder interviews with AYAs, survivors, and pediatric oncology clinicians will guide development and refinement of ReSPECT through qualitative interviews (Aim 1). Next, ReSPECT will undergo proof-of-concept testing with 30 AYA/clinician pairs in outpatient oncology clinics at Connecticut Children’s and Children’s Hospital Los Angeles to assess feasibility, acceptability, usability, and perceived impact on AYA-clinician HRQOL communication (Aim 2), and to evaluate preliminary outcomes by comparing pre- and post-intervention survey data (Aim 3). At study conclusion, ReSPECT will be ready for testing in a randomized controlled trial (planned R01). The proposed intervention is the first step in developing a systematic program of research that will improve HRQOL care for tens of thousands of AYA patients who currently do not have access to the vital resources they need.
