48 | Chapter 2 Data synthesis For all five articles, DC and DR were secondary outcomes, and without evidence for data saturation. The participants in the four qualitative studies investigating DC mentioned that time pressure, emotions, receiving too much and too complicated information, and a lack of practical information, caused DC30,35–37. Derived overarching themes relating to DC were “preparation”, “SDM roles”, “information”, “time pressure”, and “stress of diagnosis”. Derived themes relating to DR were “consequences”, which included altered appearance, depression and functional consequences, and “ambivalence”. See table 2 for all results. Quantitative studies (N=23) Risk of Bias All 23 studies had representative populations (table 1). Seventeen studies had a low RoB. Most uncertainties were due to inadequate reporting on missing data and response rates. Overall, studies using study-specific questionnaires had a higher RoB compared to studies using validated questionnaires. Studies published prior to 201038–41 were less consequent in reporting information necessary for assessing RoB. Decisional Conflict Of the four included studies32,42–44, three used the Decisional Conflict Scale (DCS)11. One study only included laryngeal carcinomas and found a mean DCS score of 25.6 (range 0-78)32. The authors had no access to the raw data to obtain prevalence. The two other studies included multiple HNC sites and found DC prevalence of 33.3% and 47.5%, respectively42,43. The fourth study used the SURE-questionnaire45 and found that 22.6% of patients reported DC44. We refrained from meta-analysis since there were only four studies, using two types of instruments (Table 3, Appendix B). Decisional Regret Three different instruments were used in the twenty studies assessing DR (see Appendix B and Table 3): study specific questionnaires (n=538–41,46), the Shame and Stigma Scale (SSS) (n=447–50), and the Decision Regret Scale (DRS) (n=1129–33,51–56). Study specific questionnaires All five papers that used a study specific questionnaire reported prevalence as primary outcome. Four were relatively old studies (1987-2009)38–41, one was from 202246, and samples ranged from 76-273 participants. One of these studies investigated DR after surgical treatment for laryngeal cancer39, and one after commando operation46. The other three papers reported on a mix of HNC sites and treatments, but all in an advanced tumor stage38,40,41. Overall, the prevalence of DR ranged from 5.1% to 35.5%.
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