The validity of instruments to measure knowledge in population-based cancer screening targeting individuals at average risk - A systematic review.

OBJECTIVES: Relevant knowledge is essential for informed choices about (non)participation in population-based cancer screening. Many instruments have been proposed to assess residents' knowledge about cancer screening programmes but their measurement properties are unknown. This systematic review aims to identify and critically evaluate the measurement properties of instruments to measure knowledge about cancer screening in individuals eligible for population-based screening. METHODS: A literature search was undertaken in PubMed, PsycINFO, Embase, CINAHL, Scopus and Web of Science in August 2023. The review included any study reporting one or more measurement properties of the questionnaire or sub-scale used measuring knowledge of cancer screening including breast, colorectal and/or cervical cancer screening. Studies including males aged 45 or older and females aged 20 or older were included. Two independent reviewers screened the articles and assessed the included articles using the COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN). RESULTS: We included 24 instruments, which varied in number and characteristics of items. All instruments were assessed as having an inadequate instrument development. The results of structural validity, internal consistency, criterion validity and reliability were assessed as indeterminate, while construct validity and responsiveness were assessed as sufficient. CONCLUSION: This systematic review identified no instruments to measure knowledge about cancer screening where the measurement properties were sufficiently evaluated. There is a lack of focus on content validity and structural validity, and further validation of the instruments is needed. The results indicate a lack of shared understanding or agreement of what constitutes relevant knowledge about cancer screening.

Making decisions on your own: Self-administered decision aids about colorectal cancer screening - A systematic review and meta-analyses.

OBJECTIVE: To provide a systematic review of self-administered decision aids (DAs) for citizens invited to participate in colorectal cancer screening synthesizing the effectiveness of self-administered DAs on informed choice or the components hereof; knowledge, attitudes, and participation. METHODS: The literature search was undertaken in PubMed, CINAHL, PsycINFO, Embase and Scopus and last updated 19 March 2021. Results were presented by narrative synthesis, meta-analyses and vote counting based on direction of effect. RESULTS: Fourteen studies of fair methodological quality were included. One study reported on informed choice and 13 studies reported on the components. Self-administered DAs increased participation and knowledge whereas it was inconclusive with regard to attitudes towards screening. The studies were very heterogeneous with different comparators, outcomes and means of measurement. CONCLUSION: This systematic review showed a potential for self-administered DAs to support informed choice in colorectal cancer screening, especially by increasing knowledge. PRACTICE IMPLICATIONS: It seems reasonable to consider informed choice to be one of the main outcomes of self-administered DAs. Yet there is a need for consensus on how to measure informed choice in cancer screening, especially a validated measurement of knowledge defining what constitutes 'adequate knowledge'.

Prevalence of chronic pain in a national cohort of patients with limb-girdle muscular dystrophy: a cross-sectional study.

PURPOSE: The aim was to investigate the prevalence, characteristics, predictors, and consequences of chronic pain in a national cohort of patients with limb-girdle muscular dystrophy (LGMD). MATERIALS AND METHODS: Questionnaires were sent to all Danish LGMD patients (≥18 years of age) registered with the National Rehabilitation Center for Neuromuscular Diseases. RESULTS: Of 209 patients, 121 responded. 44.7% of the patients experienced persistent (daily or constant) chronic pain lasting more than 3 months. 21.0% of patients experienced chronic pain that was not daily. Most pain patients experienced three or more pain problems, primarily in the lower back, neck, shoulders, hips, and legs. Symptoms suggestive of neuropathic pain were sometimes present. Patients with persistent chronic pain reported moderate pain interference with daily activities, greater psychological distress, and lower quality of life compared to patients without pain but did not differ regarding physical functioning. Sex, age, LGMD duration, LGMD type, mechanical ventilation use, mobility, arm function, or performance on activities of daily living did not predict chronic pain. CONCLUSION: Chronic pain is common in patients with LGMD. Chronic pain should be considered an important component of LGMD and addressed in the clinic and rehabilitation setting from a biopsychosocial perspective.Implication for rehabilitationChronic pain is highly prevalent in patients with limb-girdle muscular dystrophy.Health professionals need to systematically ask patients about pain and the influence of pain on everyday life irrespective of LGMD-duration and extent of muscle wastage.Chronic pain and psychological distress need to be addressed in the clinic and rehabilitation setting as an additional disabling component of LGMD and this should be done within a biopsychosocial framework.