Short and long-term psychosocial consequences of participating in a colorectal cancer screening programme: a matched longitudinal study.

OBJECTIVES: To investigate the psychosocial consequences of receiving a false-positive (no abnormalities) result or being diagnosed with polyps compared with receiving a negative result in a colorectal cancer (CRC) screening programme. DESIGN AND SETTING: This was a longitudinal study nested in the roll-out of the Danish CRC screening programme that targets all individuals aged 50-74 years. PARTICIPANTS: In the inclusion period (April-September 2017), all positive screenees (n=1854) were consecutively enrolled and matched 2:1:1 on sex, age (±2 years), municipality and screening date with negative screenees (n=933) and individuals not yet invited to screening (n=933).Questionnaires were sent by mail to all eligible participants in Region Zealand, Denmark, after the screening result, 2 months and 12 months after the final result.Positive screenees who did not receive the follow-up procedure were excluded. MAIN OUTCOME MEASURES: The primary outcomes were psychosocial consequences. Outcomes were measured with the CRC screening-specific questionnaire Consequences of screening in CRC with 11 outcomes after the screening result and with 21 outcomes at the two later assessments. RESULTS: After receiving the screening result, individuals with no abnormalities, low-risk and medium-risk and high-risk polyps scored significantly worse on 8 of 11 outcomes compared with the negative screenee group. At the 12-month follow-up, the differences were still significant in 8 of 21 outcomes (no abnormalities), 4 of 21 outcomes (low-risk polyps) and 10 of 21 outcomes (medium-risk and high-risk polyps). The negative screenee group and the group not yet invited to screening differed psychosocially on 5 of 11 outcomes after the screening result, but on none of the 21 outcomes at the 2 months and 12 months follow-up. CONCLUSIONS: The study showed that there are both short-term and long-term psychosocial consequences associated with receiving a no abnormalities result or being diagnosed with polyps. The consequences were worst for individuals diagnosed with medium-risk and high-risk polyps.

Psychosocial consequences of a three-month follow-up after receiving an abnormal lung cancer CT-screening result: A longitudinal survey.

BACKGROUND: Participation in lung cancer CT-screening can be associated with a need for follow-up procedures. The screening and waiting for test results introduce the risk of experiencing psychosocial consequences. Therefore, the aims of this study were: 1) To investigate if the psychosocial consequences changed from before an annual screening round to before a three-month follow-up CT-scan in participants with a positive screening result. 2) To investigate potential differences in psychosocial consequences between false positives (FP) and true positives (TP). FP were defined as those where cancer was not confirmed in the follow-up CT-scan and TP where it was. MATERIALS AND METHODS: This longitudinal study was based on data from the Danish Lung Cancer Screening Trial (DLCST). The Consequences of Screening - Lung cancer (COS-LC) questionnaire was used to measure psychosocial consequences among 130 participants who all received an abnormal CT-screening result at their annual screening round. Eligible participants completed the COS-LC before their annual CT-screening and before the three-month follow-up. RESULTS: We found a statistically significant increase in negative psychosocial consequences between the annual lung cancer CT-screening and the three-month follow-up CT-scan in four of nine psychosocial scales; Sense of dejection, Self-blame, Focus on airway symptoms and Harm of smoking. Furthermore, an increase, however not statistically significant, was identified in all remaining scales, except for the scale Stigmatisation which was slightly decreased. We found no evidence of an association between psychosocial consequences and diagnostic groups, FP and TP. CONCLUSIONS: An increase in negative psychosocial consequences was observed between the annual lung cancer CT-screening and the three-month follow-up CT-scan. Since we found no statistically significant difference between the diagnostic groups, the increase in negative psychosocial consequences is interpreted as a nocebo effect of living three months in uncertainty not knowing if one's positive CT-screening result was true or false.

Psychosocial consequences of invitation to colorectal cancer screening: a matched cohort study.

BACKGROUND: Psychosocial consequences of colorectal cancer (CRC) screening can arise anywhere in the screening cascade. Previous studies have investigated the consequences of participating in CRC screening; however, we have not identified any studies investigating the psychosocial consequences of receiving the invitation. Therefore, the objective of this study was to investigate psychosocial consequences of invitation to CRC screening. METHODS: The study was a longitudinal study performed in Region Zealand, Denmark. Participants included in this study were a random sample of 1000 CRC screening invitees and 1000 control persons, not invited to screening, matched in a 1:1 design on sex, age and municipality. We assessed psychosocial consequences before and after invitation in both study groups concurrently. The primary outcomes were psychosocial consequences measured with the condition-specific questionnaire Consequences of Screening in ColoRectal Cancer. RESULTS: Preinvitation response rates were 575 (57.5%) and 610 (61.0%) for the invitation group and control group, respectively. Postinvitation response rates were 442 (44.2%) for the invitation group and 561 (56.1%) for the control group.No differences in mean change in scale score were seen except for the scale 'Change in body perception'. The invitation group had a 0.39 lower change (99% CI (-0.78 to -0.004), p=0.009) in mean score than the control group in the direction of a less negative body perception after invitation. CONCLUSIONS: This study did not identify an association between invitation to CRC screening and negative psychosocial consequences.

Consequences of screening in colorectal cancer (COS-CRC): development and dimensionality of a questionnaire.

BACKGROUND: Harms of colorectal cancer (CRC) screening include psychosocial consequences. We have not identified studies using a participant-relevant questionnaire with adequate measurement properties to investigate these harms. However, Brodersen et al. have previously developed a core questionnaire consequences of screening (COS) for use in screening for life-threatening diseases. Therefore, the objectives were: (1) To investigate content validity of COS in a CRC screening setting and in case of gaps in content coverage (2) generate new items and themes and (3) test the possibly extended version of COS for dimensionality and differential item functioning (DIF) using Rasch Models. METHODS: We performed two-part-focus-groups with CRC screenees. Screenees were recruited by strategic sampling. In the first part 16 screenees with false-positive results (n = 7) and low-risk polyps (n = 9) were interviewed about their CRC screening experiences and in the second part COS was examined for content validity. When new information was developed in the focus groups, new items covering this topic were generated. Subsequently, new items were, together with COS, tested in the subsequent interviews. A random subsample (n = 410) from a longitudinal questionnaire study, not yet published, was used to form the data for this paper. We analysed multidimensionality and uniform DIF with Andersen's conditional likelihood ratio test. We assessed individual item fit to the model. We also analysed Local Dependence (LD) and DIF by partial gamma coefficients using Rasch Models. RESULTS: COS was found relevant in a CRC screening setting. However, new information was discovered in the focus groups, covered by 18 new CRC screening-specific items. The Rasch analyses only revealed minor problems in the COS-scales. The 18 new items were distributed on four new CRC screening-specific dimensions and one single item. CONCLUSION: An extended version of COS specifically for use in a CRC screening setting has been developed. The extended part encompasses four new scales and one new single item. The original COS with the CRC-screening specific extension is called consequences of screening in colorectal cancer (COS-CRC). COS-CRC possessed reliability, unidimensionality and invariant measurement.

Psychosocial consequences of false positives in the Danish Lung Cancer CT Screening Trial: a nested matched cohort study.

OBJECTIVES: Lung cancer CT screening can reduce lung cancer mortality, but high false-positive rates may cause adverse psychosocial consequences. The aim was to analyse the psychosocial consequences of false-positive lung cancer CT screening using the lung cancer screening-specific questionnaire, Consequences of Screening in Lung Cancer (COS-LC). DESIGN AND SETTING: This study was a matched cohort study, nested in the randomised Danish Lung Cancer Screening Trial (DLCST). PARTICIPANTS: Our study included all 130 participants in the DLCST with positive CT results in screening rounds 2-5, who had completed the COS-LC questionnaire. Participants were split into a true-positive and a false-positive group and were then matched 1:2 with a control group (n=248) on sex, age (±3 years) and the time of screening for the positive CT groups or clinic visit for the control group. The true positives and false positives were also matched 1:2 with participants with negative CT screening results (n=252). PRIMARY OUTCOMES: Primary outcomes were psychosocial consequences measured at five time points. RESULTS: False positives experienced significantly more negative psychosocial consequences in seven outcomes at 1 week and in three outcomes at 1 month compared with the control group and the true-negative group (mean ∆ score >0 and p<0.001). True positives experienced significantly more negative psychosocial consequences in one outcome at 1 week (mean ∆ score 2.86 (95% CI 1.01 to 4.70), p=0.0024) and in five outcomes at 1 month (mean ∆ score >0 and p<0.004) compared with the true-negative group and the control group. No long-term psychosocial consequences were identified either in false positives or true positives. CONCLUSIONS: Receiving a false-positive result in lung cancer screening was associated with negative short-term psychosocial consequences. These findings contribute to the evidence on harms of screening and should be taken into account when considering implementation of lung cancer screening programmes. TRIAL REGISTRATION NUMBER: NCT00496977.

Did psychosocial status, sociodemographics and smoking status affect non-attendance in control participants in the Danish Lung Cancer Screening Trial? A nested observational study.

OBJECTIVES: We investigated if psychosocial status, sociodemographics and smoking status affected non-attendance in the control group in the randomised Danish Lung Cancer Screening Trial (DLCST). DESIGN AND SETTING: This study was an observational study nested in the DLCST. Due to large non-attendance in the control group in the second screening round we made an additional effort to collect questionnaire data from non-attenders in this group in the third screening round. We used a condition-specific questionnaire to assess psychosocial status. We analysed the differences in psychosocial status in the third and preceding rounds between non-attenders and attenders in the control group in multivariable linear regression models adjusted for sociodemographics and smoking status reported at baseline. Differences in sociodemographics and smoking status were analysed with χ2 tests (categorical variables) and t-tests (continuous variables). PRIMARY OUTCOME MEASURE: Primary outcome was psychosocial status. PARTICIPANTS: All control persons participating in the third screening round in the DLCST were included. RESULTS: Non-attenders in the third round had significantly worse psychosocial status than attenders in the scales: 'behaviour' 0.77 (99% CI 0.18 to 1.36), 'self-blame' 0.59 (99% CI 0.14 to 1.04), 'focus on airway symptoms' 0.22 (99% CI 0.08 to 0.36), 'stigmatisation' 0.51 (99% CI 0.16 to 0.86), 'introvert' 0.56 (99% CI 0.23 to 0.89) and 'harms of smoking' 0.35 (99% CI 0.11 to 0.59). Moreover, non-attenders had worse scores than attendees in the preceding screening rounds. Non-attenders also reported worse sociodemographics at baseline. CONCLUSIONS: Non-attenders had a significantly worse psychosocial status and worse sociodemographics compared with attenders. The results of our study contribute with evidence of non-response and attrition driven by psychosocial status, which in turn may be influenced by the screening intervention itself. This can be used to adjust cancer screening trial results for bias due to differential non-attendance. TRIAL REGISTRATION NUMBER: Clinicaltrials.gov Protocol Registration System (NCT00496977).

Psychosocial consequences of receiving false-positive colorectal cancer screening results: a qualitative study.

Objective: The objective of this study was to investigate the psychosocial consequences of receiving false-positive colorectal cancer (CRC) screening results, following a positive immunochemical faecal occult blood test. Design, setting, and subjects: We conducted a qualitative study with four semi-structured focus group interviews with 16 participants aged 50-74, all of whom had received a false-positive result in the national Danish CRC screening programme. We selected, recruited, and grouped participants to ensure maximum variation, and to enable a level of confidence to speak openly about experiences of screening. We subjected interview data, audio-recordings, and transcripts to a strategy of qualitative analysis called systematic text condensation. Results: We identified four main themes which described the psychosocial consequences of false-positive CRC screening results: anxiety; discomfort; changed self-perception and behaviour; and considerations on participation in screening. Each of these themes covered a wide range of experiences which were relevant to the informants and broadly shared by them in many aspects. Conclusions: Receiving false-positive results from CRC screening can lead to negative psychosocial consequences such as changes in self-perception and anxiety: some participants may experience subsequent relief, others not. These negative psychosocial consequences might persist over time. Implications: Negative psychosocial consequences from false-positive CRC screening results may result in a greater use of general practitioner services by healthy people who need reassurance or further tests. More research using condition-specific measures is required to further understand the degree and potential persistence of psychosocial consequences of false-positive results from CRC screening. Key Points Participants who receive false-positive colorectal cancer (CRC) screening results may experience negative psychosocial consequences e.g. anxiety and subsequent relief. Participants who receive false-positive CRC screening results may experience discomfort during the screening process. Participants who receive false-positive CRC screening results may experience longer term changes of self-perception. Participants who receive false-positive CRC screening results may experience ambivalence about the offered diagnostic down-stream procedures including colonoscopy.