4.1 Discussion
With this cross-sectional study we aimed to show how patients felt in the process of preoperative decision making. We retrospectively asked patients or their legal guardians who have undergone HE, TE/TT or SA how they felt in the decision process, mainly about information they received and information needs and also if a second opinion was obtained. As far as we know, this is the first study evaluating the decisional process for these indications retrospectively with the focus on information needs and the obtainment of a second opinion. The results showed that most patients felt it was a rather urgent decision and for half of the patients it was a rather easy one. For most patients, information from their physician who recommended surgery was mainly understandable and sufficient. Whereby patients felt less informed about risks and adverse events of the surgery and alternatives to surgery compared to the benefits and specifics on the disease. Moreover, if respondents retrieved additional information it was about adverse events of the surgery and treatment alternatives. More patients stated that they did not need any further information in addition to that of the recommending physician than patients who stated that they actually did not seek any further information in addition to that of the recommending physician. A third obtained a second opinion.
We are not aware of any research that provides a comparable comprehensive picture for the three indications as we did (evaluation of information, evaluation of decision) but there are studies analyzing specific topics for each of the indications assessed here. Most studies considering evaluation of information were in patients undergoing HE. Meanwhile, the consideration of the decision process was seen more in studies with parents whose children underwent TE.
4.1.1 Evaluation of information
Uskul et al. investigated information seeking and the decision process in women undergoing HE in an interview study [27]. Women reported that their gynacologists did not initiate a discussion on other treatments and that they mostly informed themselves (from other women). In our study, the information on other treatments was rated as very good in 28 % and good in 34 % of cases. Collins et al. found in an interview study with 21 women that there were some patients consent with the information before surgery received, while others were not, especially on surgical risks and symptoms in recovery and others could not remember [28]. If questions arose after the consultation, the women responded according to their trust in the health professionals, either by waiting confidently for further information or by searching for information online. Pakbaz et al. investigated whether women undergoing (benign) HE received information about the effect on sexuality and the function of the bladder and bowel [29]. Only about a quarter reported that they received information about this. In the literature it is discussed that HE either affect these symptoms positively or negatively [30-32]. In our study we did not ask specifically for information about these symptoms. Pianosi et al. evaluated how much parents could recall about risks and benefits in pediatric otolaryngology and found out that this was very poor (11 % reported that no benefits were discussed and 12 % that no risks were discussed with the physician) [33]. They also found that parents who decided to proceed with surgery recalled risks significantly less than those who did not, this is especially interesting when considering our results where everyone opted in for surgery. Research on information for the decision for or against shoulder arthroscopy showed that depending on the way information was given (so called “framing”) made a difference in how people decide. Torrens et al. showed that a positive framing with the focus on the benefits of the surgery compared to a negative framing with a focus on the risks of the surgery led to significantly more decisions for surgery [34]. Again, as all of our participants underwent surgery the reporting of more sufficient information on the benefits of the surgery than on the harms could also be a sign of positive framing.
4.1.2 Evaluation of the decision
Uskul et al. also investigated the decision process before HE. The decision process was evaluated as difficult [27]. In our study, participants said the decision was hard in only 16 % and very hard in 6 % of the cases. Carr et al. and Hong et al. analysed decisional conflict and regret in parents whose children underwent TE. They found out that a higher decisional conflict was significantly correlated with a decisional regret and Carr et al. measured a decisional conflict in 26 % of their participants [35, 36]. In both studies, decisional conflict was higher in those parents who did not bring their child for surgery in the end. As we only included patients who underwent surgery and have low rates of decisional conflict, it seems possible that decisional conflict is generally lower in those who decide for a surgery compared to those who decide against. We saw very similar numbers of the obtainment of a second opinion (30 %) compared to one of our other substudies [16]. This is interesting in that the majority of participants reported that the decision was perceived as urgent (80%). We would have expected a lower obtainment of a second opinion with this high level of urgency. But perhaps the impressions of needs and what was actually realized blurred in retrospect.
4.1.3 Prospect
Numerous studies are dealing with informed-consent, shared-decision making or the effectivity of decision aids. Less studies have looked at the decision-making process in a routine environment. We have looked into satisfaction about information and the decisional process with only a physician as the health care provider on the one side and the patient, let alone with the information retrieved, on the other side. Our results show that patients who decided to undergo surgery are generally satisfied with the information they receive. There is some lack of perceived information on risks and treatment alternatives compared to information about the condition and benefits of the surgery. We do not know if this is a structural problem or evolved due to our retrospective methods. In Germany, information on risks of a surgery are often only provided shortly before surgery and mostly from the surgeon, because there is no regulation as to what information is provided (in the outpatient setting) beforehand. Probably many patients hear about risks of the surgery after scheduling surgery and just before the conduct. More research is necessary to assess at what stage (and to what extend) the information about risks and treatment alternatives should be given to the patients, so that it supports their decision making and is easier for them to remember. Moreover, we did not assessed the physicians’ view regarding the questions we raised. It would be of interest to evaluate the perspective of physician which point of care should be responsible for the information on risks, how a consultation regarding HE, TE/TT or SA is handled in routine care and what deficits they assume.
4.1.4 Strength and limitations
Our study has several limitations. The most important one is that only patients who underwent surgery were invited to take part in this survey. This leads to the assumption that our results are only valid for those patients who accept a surgery but not for those who decline or those who are still unsure. It is possible that the relatively high values for satisfaction with the information received from the physician are due to the fact that patients who underwent surgery needed a certain amount of information to make this decision. While patients who did not (yet) undergo surgery did not have this information and therefore refused surgery. This could also explain the higher decisional conflict in those patients who opted out for surgery [35, 36]. It is also possible that our participants rated the satisfaction/completeness of the information as more sufficient than it actually was, so that the decision did not cause cognitive dissonance which would also correlate with low levels of DCS and DRS. This limitation goes hand in hand with another. A relatively high proportion of participants state that they had a (strong) improvement in their symptoms after the surgery. It is possible that particularly satisfied patients who were also particularly satisfied with the information provided took part. Or there was a halo effect and the high satisfaction with the outcome of the surgery led to an overestimation of the underlying decision and information. We saw that patients with positive change in health status rather evaluated the information received, the feeling of being informed in general and the comprehensibility of the recommendation as good. Due to the recruitment process, it was only possible to identify patients who had undergone surgery. In another part of the project, we tried to recruit patients to participate in a prospective survey during a physician's visit with the same indications but before decision for a surgery was made. The number of participants was very low in contrast to the recruitment via the health insurance company [16, 17]. The retrospectivity also leads to the assumption of a possible recall bias. For some participants, the surgery was more than 2 years ago, and when we compare the results with Pianosi et al., we see a probability that information about risks could be recalled less than information about benefits [33]. Additionally to the DRS, we used the DCS which is a tool supposed to be used in a prospective manner, so that the validity is limited. We did not report it here, only in the appendix. In the survey, we asked about the information received by the physician who recommended the surgery, but we do not know how many health professionals have been consulted before the recommendation or afterwards. Therefore, we cannot be sure that the participants were only referring to the conversation with the physician who first recommended the surgery. It is possible that the participants of our survey are not representative for patients with HE, TE/TT and SA in Germany. It is discussed that insured persons of the AOK have a lower socio-demographic status than the average of the German population [37]. Moreover, we only recruited patients in the regions of Berlin, Brandenburg and Mecklenburg-Western Pomerania, which are, except of Berlin, weaker regions regarding economy and infrastructure compared to other parts of Germany.
Beside the limitations of our study, there are specific strengths. Firstly, as far as we know, it is the first survey of patients who underwent HE, TE/TT or SA asking about their satisfaction with information before surgery and various aspects of the decision. Moreover, we reached a high number of responses and received a reliable dataset. Because of the way we invited patients here (online and anonymous), we have a low probability that participants gave socially desirable answers, as there was no “social instance” to judge.