Rationale and Objectives
Spiral computed tomography (SCT) is being evaluated as a screening tool for lung cancer. Our objective was to describe the effect of participation in SCT screening on participants’ risk perceptions, worry, and expectations regarding the accuracy of the screening result.
Materials and Methods
We surveyed 60 individuals with lung cancer family history who were participating in an SCT study for the primary purpose of improving genetic linkage analysis at baseline, and then 1 and 6 months post-SCT.
Results
Of the 60 participants, 40 received normal results, 19 received non-negative results requiring follow-up, and 1 was diagnosed with lung cancer. At baseline, participants reported high levels of perceived lung cancer risk (64%), were concerned about developing lung cancer (94%), and the majority (84%) were not OK with receiving a non-negative SCT result when they really didn’t have cancer. At 1 month post-SCT, those with a non-negative screen ( n = 19) had lowered their expectations of test accuracy regarding non-negative results (54%) and reported increased levels in worry/concern (100%) and perceived risk (75%), but these effects diminished over time and returned almost to baseline levels at 6 months.
Conclusions
Persons at very high empiric risk for lung cancer expect their SCT screening test to be accurate and present with high levels of lung cancer risk perception and worry/concern overall. Our findings suggest a need for risk counseling and discussion on the limitations of screening tests to accurately detect lung cancer.
Lung cancer is the leading cause of cancer death in the United States among both men and women . It is estimated that an individual’s risk of developing lung cancer doubles if he or she has a first-degree relative with lung cancer . Although the 5-year relative survival rate for all stages of lung cancer combined remains at 15%, a more promising survival rate of 50% is shown among patients diagnosed with localized early-stage disease . Early-stage lung cancer is largely asymptomatic and, as a result, the disease is usually diagnosed at advanced stages when prognosis is poor. Unfortunately, current methods of lung cancer screening have not proven effective in detecting asymptomatic lung cancer and are not recommended . However, individuals with a significant family history of lung cancer present a select high-risk group who could benefit from early screening and detection.
Recent advances in screening technology, such as spiral computed tomography (SCT), could improve survival rates, because it has exhibited promising results in detecting early-stage (Stage I) lung cancer . However, there is still much debate over the results of these initial studies , including concerns about the high proportion of “non-negative results” (lesions detected that require further follow-up to determine whether or not they are cancerous) and increases in the overall costs of screening . In the Mayo Clinic Lung SCT study of smokers from the general population , 69% of participants were found to have “non-negative results” during the 2 years after baseline computed tomography (CT) screening, and the majority of these were subsequently found to be benign after additional testing via follow-up SCT scans at 6 and 12 months.
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Methods
Study Population and Study Procedures
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‘If (the scan) detected something indeterminate, it would depend on its size.’ I might say, ‘Let’s go every six or 12 months.’ I would tell them, ‘It’s something I’m not real worried about, it’s probably benign but we need to keep an eye on it.’
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Measures
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Statistical Analysis
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Results
Demographic and SCT Findings
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Table 1
Baseline Characteristics of Participants in High Familial Risk Spiral Computed Tomography Screening Study ( n = 60)
Male ( n = 29) n (%) Female ( n = 31) n (%) Total ( n = 60) n (%) Age (mean, SD) 53.3 (11.0) 51.7 (11.1) 52.5 (11.0) Race-ethnicity Caucasian 29 (100%) 29 (93%) 58 (97%) Unreported 0 (0%) 2 (7%) 2 (3%) Number of first-degree relatives with lung cancer 1 18 (62%) 22 (71%) 40 (67%) 2 4 (14%) 5 (16%) 9 (15%) 3 7 (24%) 4 (13%) 11(18%) Spiral computed tomography screening results ∗ Negative 20 (69%) 20 (65%) 40 (67%) Non-negative 8 (28%) 11 (35%) 19 (31%) Lung cancer 1 (3%) 0 (0%) 1 (2%) Smoking status Never 1 (3%) 2 (7%) 3 (5%) Former 17 (59%) 29 (45%) 31 (52%) Current 11(38%) 15 (48%) 26 (43%)
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Tobacco Use
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Expectations of Accuracy of Lung Cancer Screening Results
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Table 2
Expectations for Accuracy of Screening Results at Baseline and by Spiral Computed Tomography Screening Result ∗ at 1 and 6 Months
1 Month ( n , %) 6 Month ( n , %) Question Baseline ( n , %) Negative Non-negative Negative Non-negative It would be OK if a test detects less than 100% of people who have lung cancer. Agree (1) 25 (52%) 16 (50%) 7 (50%) 15 (44%) 5 (31%) Disagree (2) 23 (48%) 16 (50%) 7 (50%) 19 (56%) 11 (69%) It would be OK if a test says cancer may be present in a person who really does not have lung cancer. Agree (1) 13 (26%) 7 (21%) 7 (47%) 5 (15%) 4 (25%) Disagree (2) 37 (74%) 26 (79%) 8 (53%) 29 (85%) 12 (75%) If a test says I may have lung cancer when I do not have it that is OK with me. Agree (1) 8 (16%) 6 (18%) 6 (46%) 4 (12%) 3 (20%) Disagree (2) 41 (84%) 27 (82%) 7 (54%) 29 (88%) 12 (80%) If a test says I do NOT have lung cancer when I DO, that is OK with me. Agree (1) 4 (8%) 5 (15%) 3 (20%) 4 (12%) 1 (6%) Disagree (2) 47 (92%) 28 (85%) 12 (80%) 29 (88%) 15 (94%)
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Lung Cancer Risk Perception
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Table 3
Psychosocial Measures of Participants from High-risk Families at Baseline and by Screening Result at 1 and 6 Months Post-spiral Computed Tomography Lung Cancer Screening
Question 1 month ( n , %) 6 month ( n , %) Spiral computed tomography result ∗ Baseline ( n , %) Negative Non-negative Negative Non-negative Cancer thoughts Not at all 18 (35%) 16 (46%) 2 (13%) 14 (41%) 5 (31%) Some 33 (65%) 19 (54%) 13 (87%) 20 (59%) 11 (69%) Mood affected Not at all 33 (66%) 25 (71%) 11 (73%) 27 (79%) 11 (69%) Some 17 (34%) 10 (29%) 4 (27%) 7 (21%) 5 (31%) Daily activity affected Not at all 46 (92%) 34(97%) 15 (100%) 32 (94%) 15 (94%) Some 4 (8%) 1 (3%) 0 (0%) 2 (6%) 1(6%) Cancer concern No concern 3 (6%) 4 (11%) 0 (0%) 3 (9%) 1 (6%) Concern 47 (94%) 31 (89%) 15 (100%) 31 (91%) 15 (94%) Perceived comparative cancer risk Higher 38 (76%) 26 (74%) 11 (69%) 20 (57%) 13 (81%) Same 8 (16%) 6 (17%) 4 (25%) 14 (40%) 2 (13%) Lower 4 (8%) 3 (9%) 1 (6%) 1 (3%) 1 (6%) Perceived absolute cancer risk Likely 32 (64%) 22 (63%) 12 (75%) 23 (66%) 12 (75%) Neither likely nor unlikely 4 (8%) 5 (14%) 1 (6%) 3 (9%) 1 (6%) Unlikely 14 (28%) 8 (23%) 3 (19%) 9 (25%) 3 (19%)
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Lung Cancer Worry/Concern
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Discussion
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Conclusion
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Acknowledgments
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Appendix
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