Commonly asked questions for lung cancer screening

Introduction. Lung cancer screening (LCS) can reduce lung cancer mortality; however, poor understanding of results may impact patient experience and follow-up. We sought to determine whether an informational handout accompanying LCS results can improve patient-reported outcomes and adherence to follow-up.

Study Design. This was a prospective alternating intervention pilot trial of a handout to accompany LCS results delivery.

Setting/Participants. Patients undergoing LCS in a multisite program over a 6-month period received a mailing containing either: 1) a standardized form letter of LCS results (control) or 2) the LCS results letter and the handout (intervention).

Intervention. A two-sided informational handout on commonly asked questions after LCS was created through iterative mixed-methods evaluation with both LCS patients and providers.

Outcome Measures. The primary outcomes of 1)patient understanding of LCS results, 2)correct identification of next steps in screening, and 3)patient distress were measured through survey. Adherence to recommended follow-up after LCS was determined through chart review. Outcomes were compared between the intervention and control group using generalized estimating equations.

Results. 389 patients were eligible and enrolled with survey responses from 230 participants (59% response rate). We found no differences in understanding of results, identification of next steps in follow-up or distress but did find higher levels of knowledge and understanding on questions assessing individual components of LCS in the intervention group. Follow-up adherence was overall similar between the two arms, though was higher in the intervention group among those with positive findings (p=0.007).

Conclusions. There were no differences in self-reported outcomes between the groups or overall follow-up adherence. Those receiving the intervention did report greater understanding and knowledge of key LCS components, and those with positive results had a higher rate of follow-up. This may represent a feasible component of a multi-level intervention to address knowledge and follow-up for LCS.

Methods
Study Population

This study was performed in a Seattle, Washington-based multisite program which oversees LCS provided by 4 tertiary care centers, 27 primary care clinics, specialty services, and self-referred patients. Screening is largely decentralized and managed by primary care providers. Central oversite is used to assist with scheduling and to standardize and track reporting. Screening results are sent to patients via standardized letter by the LCS program within 1 week of screening, with separate letter templates for each Lung-RADS category with additional information for those with “Other significant” or “S-findings.” Other results communication is at the discretion of the ordering physician and may include phone calls, visits, or communication through the electronic health record (EHR). Patients may also access their own LDCT reports through an EHR portal.

Study Design

This was a prospective, alternating-intervention controlled trial of the CAQ handout to accompany screening results. The CAQ handout was based partially on the American Thoracic Society “What is a lung nodule?” handout, modified and tailored based on patient focus groups and provider interviews. During the trial, post-screening letter contents alternated on a weekly basis between the standard Lung-RADS-based form letter (control) and the form letter with the CAQ handout (intervention). All screening patients undergoing LDCT across the system were included in this allocation scheme from December 7, 2020, through June 14, 2021 (with the exception of a 5-week pause for EHR transition). 

One week after sending the results, a second mailing was sent to participants, including an introductory letter, an information statement, a $5 incentive, the survey instrument and a stamped return envelope. At this stage, participants who did not have a valid mailing address (n=12), were identified as non-English speaking (n=6) or had cognitive impairment (n=2) documented in the EHR, were excluded from the study. If surveys were not returned within 2 weeks, a study coordinator called the patient, reminding them to return the survey and offered to complete the survey with them by phone. Up to three reminder phone calls were provided. This was a partially blinded study. Ordering providers were unaware of the study assignment, as were research coordinators who assisted participants and completed data entry. This study was approved by the Fred Hutchinson Cancer Center Institutional Review Board with a waiver of informed consent.

The CAQ handout is a single front-and-back handout. The handout covers topics such as: lung nodules and common causes, next steps after screening, reassurance for waiting for follow-up or annual scans, common incidental findings and smoking cessation information. The handout provides infographics on lung nodule size and the Lung-RADS categorization system. The CAQ handout was created to increase understanding of LCS results, improve adherence to screening follow-up and relieve anxiety around results given the high likelihood of lung nodules and incidental findings on LDCT.

Measures

The primary outcomes were defined by a 94-item survey created by the study team and piloted by two research coordinators. Topical areas of the survey included: demographics and overall health, assessment of understanding of LCS, assessment of lung cancer risk, understanding of next screening steps, and distress following screening measured by the Impact of Event Scale (IES). Those who identified on the survey that they received the CAQ completed additional questions to assess the acceptability and appropriateness of the CAQ, using the validated acceptability of intervention measure (AIM) and intervention appropriateness measure (IAM).

We also followed patients longitudinally for at least 15 months after their enrollment to determine the differences in adherence to recommended LCS follow-up. LCS follow-up was ascertained on all participants who were enrolled in the study, whether or not they returned a survey, through review of the EHR with each participant reviewed by two team members (MT and MS). Adherence to follow-up was standardized by Lung-RADS recommendation, consistent with prior study; for patients with Lung-RADS 1 or 2: a chest CT (low-dose or diagnostic) completed within 11-15 months, for Lung-RADS 3: a chest CT completed within 5-8 months, for Lung-RADS 4A: a chest CT completed within 4 months, and for Lung-RADS 4B: a diagnostic image, procedure or provider follow-up consultation within 1 month. Participants who died or had documented move out of area or transferred their care (n=3) were excluded from this analysis.

The dataset was maintained in RedCap data repository.