Adaptation of a Tailored Lung Cancer Screening Decision Aid for People With HIV

Abstract

Background: People with HIV are both at elevated risk of lung cancer and at high risk of multimorbidity, which makes shared decision-making (SDM) for lung cancer screening (LCS) in people with HIV complex. Currently no known tools have been adapted for SDM in people with HIV.

Research question: Can an SDM decision aid be adapted to include HIV-specific measures with input from both people with HIV and their providers?

Study design and methods: This study used qualitative methods including focus groups of people with HIV and interviews with HIV care providers to adapt and iterate an SDM tool for people with HIV. Eligible participants were those with HIV enrolled in an HIV primary care clinic who met age and smoking eligibility criteria for LCS and HIV care providers at the clinic. Both the focus groups and interviews included semistructured discussions of SDM and decision aid elements for people with HIV. We used a framework-guided thematic analysis, mapping themes onto the Health Equity Implementation framework.

Results: Forty-three people with HIV participated in eight focus groups; 10 providers were interviewed. Key themes from patients included broad interest in adapting LCS SDM specifically for people with HIV, a preference for clear LCS recommendations, and the need for positive framing emphasizing survival. Providers were enthusiastic about personalized LCS risk assessments and point-of-care tools. Both patients and providers gave mixed views on the usefulness of HIV-specific risk measures in patient-facing tools. Themes were used to adapt a personalized and flexible SDM tool for LCS in people with HIV.

Interpretation: People with HIV and providers were enthusiastic about specific tools for SDM that are personalized and tailored for people with HIV, that make recommendations, and that inform LCS decision-making. Divergent views on presenting patient-facing quantitative risk assessments suggests that these elements could be optional but available for review. This tool may have usefulness in complex decision-making for LCS in this population and currently is being evaluated in a pilot prospective trial.

Keywords: HIV; HIV infections; early detection of cancer; health care disparities; health services accessibility; lung neoplasm diagnosis; lung neoplasms; qualitative research.

Figure 1 –

Example of a tailored shared decision-making tool for a patient. The patient is a 68-year-old man with COPD, chronic kidney disease, and long-standing well-controlled HIV. He currently smokes and has a 50-pack-year history of smoking. A, Personalized risk assessment that does not include quantitative values, providing a summary recommendation for screening, confirming eligibility, and comparing risk with that of the average patient with lung cancer screening. B, Risk assessment data shown at a patient’s request, including a numeric 5-year risk of lung cancer developing, a 5-year risk of mortality, and a personalized number needed to screen in a group of similar patients. C, Pictogram allowing visualization of the benefits of screening in lives saved from lung cancer in a hypothetical cohort of 1,000 people who are similar to the index patient. D, Pictogram including a depiction of significant harms of screening, including unnecessary invasive testing and complications.