Objective: Our aim was to investigate why participants opted out of colonoscopy following a positive screening result for colorectal cancer. Design: Semi-structured, qualitative, single interviews. We audio-recorded and transcribed all interviews verbatim and used Strauss and Corbin’s concept of open, axial, and selective coding to identify the main categories shared across all interviews. These formed the basis of our findings. Setting: A Danish national colorectal cancer screening programme. Subjects: Single interviews with 13 participants who declined to have a colonoscopy. Main outcome measures: Reasons to decline colonoscopy after positive screening test. Results: Participants gave 42 different reasons for deciding not to have a colonoscopy and we coded them into nine main categories; Practical barriers, Discomfort of the examination, Personal integrity, Multimorbidity, Feeling healthy, Not having the energy, Belief that cancer is not present, Risk of complications, and Distrust in the accuracy of the iFOBT. Conclusions: Our findings suggest that some practical barriers could be quite easily addressed, by offering the participants alternative management and procdures. Implications: Further research is needed to examine how widely our findings are represented in the general population, and how general practitioners should consult with patients who have opted out of colonoscopy, despite a positive screening result. Key points Some screening participants are reluctant to proceed with further diagnostic tests for colorectal cancer following a positive screening result. • Interviews with people, who had refused a follow-up colonoscopy, discovered nine categories (42 reasons) of reasons for refusal. • Reluctance can be addressed by offering support with pre-procedure preparations and alternatives to colonoscopy. • General practitioners face ethical dilemmas and challenges, when patients at risk of colorectal cancer decline to proceed with screening.
This systematic review aimed to assess the adequacy of measurement properties in Patient-Reported Outcome Measures (PROMs) used to quantify psychosocial consequences of colorectal cancer screening among adults at average risk. Methods: We searched four databases for eligible studies: MEDLINE, CINAHL, PsycINFO, and Embase. Our approach was inclusive and encompassed all empirical studies that quantified aspects of psychosocial consequences of colorectal cancer screening. We assessed the adequacy of PROM development and measurement properties for content validity using The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) risk of bias checklist. Results: We included 33 studies that all together used 30 different outcome measures. Two PROMs (6.7%) were developed in a colorectal cancer screening context. COSMIN rating for PROM development was inadequate for 29 out of 30 PROMs (97%). PROMs lacked proper cognitive interviews and pilot studies and therefore had no proven content validity. According to the COSMIN checklist, 27 out of 30 PROMs (90%) had inadequate measurement properties for content validity. Discussion: The majority of included PROMs had inadequate development and measurement properties. These findings shed light on the trustworthiness of the included studies' findings and call for reevaluation of existing evidence on the psychosocial consequences of colorectal cancer screening. To provide trustworthy evidence about the psychosocial consequences of colorectal cancer screening, editors could require that studies provide evidence of the methodological quality of the PROM. Alternatively, authors should transparently disclose their studies' methodological limitations in measuring psychosocial consequences of screening validly.
medicine and physical education journals, and written 2 responses to letters from those entrenched in poor methodologies. Despite our polite, transparent, scientifically-based pleas for 'constructive, collaborative debate' we have encountered editorial bias, e.g. turned down without review; turned down despite positive reviews; appealed editorial decisions and been prevented from responding to letters commenting Conclusions Others have attempted to diminish our contributions by employing in letters a tone of thinly disguised hostility or accusing us of evangelistic fervour whilst failing to justify their own methods. Yes, we are challenging; shifting an entire research culture, which has its roots in university teaching, is not easyscientific rigour in aspects of our discipline plays second fiddle to practical, convenient, traditional and feasible. Although this is happening on the periphery of mainstream medical research, children's health matters and as the population becomes increasingly sedentary and overweight we urgently need to develop scientifically rigorous methods to measure and interpret CRF in health and disease. Already a generation of researchers and policy makers has been misinformed and misled by flawed data. Those of us facing these challenges need to work together to develop strategies for shifting research culture back towards defensible science.
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