Anne Heirman

40 | Chapter 2 Abstract Importance: Head-and-Neck cancer (HNC) often requires treatment with major impact on quality of life (QoL). Treatment decision-making is often challenging, as it involves balancing survival against the preservation of QoL, and choosing among treatments with comparable outcomes but variation in morbidity and adverse events. Consequently, the potential for decisional conflict (DC) and decision regret (DR) is high. Objective: This systematic review summarizes the literature on DC and DR in HNC, to give an overview of its prevalence and extent, and to advice on clinical practice and future research. Data sources: We searched Embase.com, Web of Science, MEDLINE, and PsycINFO up to 24-02-2023, including all years of publication. Study Selection: Eligible studies addressed DC and/or DR as primary or secondary outcome with any instrument in HNC, except cutaneous tumors. Two mutually blinded researchers conducted screening and inclusion with support of Rayyan software’s AI assistant and conducted Risk of Bias (ROB) assessment. Data Extraction and Synthesis: PRISMA guidelines were followed for data-extraction. RoB were done using CASP (qualitative) and CLARITY (quantitative). Meta-analysis with a random-effects model was considered to obtain pooled prevalence estimates for DC and DR when at least four sufficiently clinically homogeneous studies were available. Main Outcomes and Measures: Prevalence of DC (qualitative, Decisional Conflict Scale, SURE questionnaire) and DR (qualitative, study-specific questionnaires, Decision Regret Scale, Shame and Stigma Scale). Results: Twenty-eight studies were included, with sixteen included in meta-analyses for DR prevalence. The pooled prevalence of clinically relevant DR above cut-off score for validated questionnaires (eleven studies, n=2053) was 71% (95% CI 58% – 82%, I2 = 94%), while for study-specific questionnaires (fives studies, n=674) it was 11% (95% CI 5% – 22%, I2 =92%). This suggests study-specific questionnaires underestimate DR. Only four studies investigated DC, showing a prevalence of 22.6-47.5% above cut-off values. Derived overarching themes found in qualitative studies were “preparation”, “SDM roles”, “information”, “time pressure”, “stress of diagnosis” and “consequences”.

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