Better-Informed Decision-Making to Optimize Patient Selection

Fig. 14.1
Low-risk prostate cancer DM

Patients’ Backgrounds

As previous studies demonstrated [14, 15], patients have personal characteristics that may impact on the treatment DM process. Demographic, psychosocial and clinical variables may affect patient’s final decision. Personality traits such as neuroticism can impact on patients’ perspectives [16]. On the contrary, optimistic traits and high resilience have been associated with low emotional distress [17]. Together with personality, personal attitudes towards life and stressful events, as well as age, can influence treatment DM [16, 18, 19]. Findings on younger men highlighted higher anxiety levels at the moment of diagnosis [20]. Younger men may be more exposed to the decisional dilemma of facing death-related anxiety vs the desire to protect their quality of life [21]. A further demographic variable that has been discussed in literature is education. Highly educated men were reported as seeking second opinions and having a harder time selecting the treatment especially when specialist’s information and recommendations differed [16], whereas less educated men are usually more inclined to assume a passive DM style [18].

Scarce research addressed faith/religion and cultural differences in treatment DM [16, 19]. Faith and religion may act as support in treatment DM process as coping with uncertainty-related distress. Research on differences based on ethnicity showed that men with African-American background were found to report less trust in the healthcare system, which may influence their treatment DM process. Other studies showed that Hispanics, Asian and Latinos were more likely to prefer surgery [19, 22].

Finally, pre-existing medical conditions (such as cardiovascular disease, diabetes or cancer) were reported as crucial variables when deciding for treatment/AS. Some researchers [18, 23] reported that medical conditions did not affect patients’ perception of seriousness of their cancer; however, given the paucity of literature on this aspect, more understanding on how the presence of comorbidities influences men’s attitude towards AS is needed.

Internal Factors

Patients’ values and personal beliefs regarding cancer are important factors influencing treatment DM [24]. When patients consider cancer a sort of slow-moving turtle ([18], p. 91), they are more oriented towards AS. On the other hand, men whose belief is that cancer should be removed would be more likely to prefer an active treatment [25, 26] and to more often switch from AS to active treatment [27]. Patients’ perceptions of some medical aspects, for instance, specific antigen velocity [27, 28], can make the difference between choosing for an active treatment vs AS; indeed, patients after diagnosis of low-risk PCa often search for scientific evidences [29], and men who consider only surgery may have different perceptions of treatment efficacy than men who consider also other treatment options [19].

Together with personal beliefs , men’s attitudes and expectations towards cancer can be precursors of treatment DM process. Patients create their own scenario of cancer when they receive the diagnosis. Assuming, correctly or not, that their physicians objectively explain all the treatment options and the related efficacy, patients may not necessarily develop accurate expectations and may create a personal perception of treatment security and side effects [16, 24]. Men’s perceptions of side effects and the extent to which they value a specific aspect of functioning are important components of the DM process too. Moreover, patients may have attitudes towards physicians such as trusting – or not trusting – doctors based on a number of previous experiences, which will make them rely on some experts rather than others [16].

The role of emotions and psychological factors in treatment DM has been discussed. The opportunity to choose treatment/AS may represent an actual burden [19] which affects the DM process itself [30]. Anxiety is a key factor from the moment PCa is diagnosed and in the whole DM process [31]. Literature results in decision-related distress and PCa treatment decisions are not consistent. Some studies reported a relationship between specific treatment and distress, with outcomes such as decision regret when distress is higher [32] and satisfaction with the choice when distress is lower [33]. Conversely, other studies showed no relationship between decision-related distress and treatment options [11]. Finally, some studies revealed the role of anxiety in predicting the decision of patients to move from AS to active treatment [27].

Another important personal factor influencing treatment DM is the fear of uncertainty. According to some authors, this factor is probably the one that mostly accounted for selecting treatment/AS – despite the potential of treatment side effects [34]. The desire to take action in the face of cancer threat can motivate patients in choosing an active treatment over AS; in particular, surgery is viewed as the most aggressive treatment against the threat of cancer [25].

Finally, the way patients deal with the cancer diagnosis may have an impact on the treatment DM process. Attempting to take control of the decision, seeking information and searching for social support are common strategies through which patients positively cope with the diagnosis [16, 18]. Seeking information is one of the most used coping strategies when patients are in need of reassurance [35]. Men with PCa diagnosis who sought information (written information and the Internet) about treatment options ended their search only once the final AS decision was taken [18].

External Factors

Patients may perceive and/or receive “external pressure” from family, physicians, peers, other survivors’ experiences and anecdotal experience [11, 16, 18, 19, 29]. Even though a portion of patients prefers not to reveal to others their health status and they prefer their cancer diagnosis to be a secret [18], most men are likely to seek information and suggestions from friends; indeed, vicarious experiences and other people’s beliefs play a strong sway over men’s final decisions [16]. Differences in treatment orientation may vary based on men’s marital status with married/living with partner, men being more oriented to consider only surgery [19]. In particular for younger men, their wives preferred the surgery option. Wives and partners are often described by patients as information gatherers and supporters [16]; some studies highlighted that wives and family pressures extensively influenced patients’ DM [36] so that men who were oriented to AS “went back” and decided to have active treatment. There is strong agreement in the literature about the central role of physicians and specialists in the DM process. One of the main sources of information for patients is the physician and there is the risk that to a hammer everything looks like a nail and that physicians carry with them a bias determined by their own field of speciality when describing treatment options. A lack of knowledge regarding AS may prevent also physicians including it among the options. A multidisciplinary approach [10, 37, 38] is likely to limit such bias as patients have the opportunity to discuss treatment options with different specialists at the same time. Physicians’ points of view on treatment options, the way in which physicians describe diagnosis and treatment options and physicians’ recommendations are all elements that significantly influence patients’ choice. Physicians’ professionalism, expertise, reputation and research profiles may help patients perceive a sense of security and confidence in physicians’ recommendations [18], sometimes putting on the background men’s own priorities and needs. Most research reports that a small number of men with localized PCa are presented with the option of AS [16, 18, 19, 23, 29, 39]. Physicians may influence patients by directly recommending one option over another, or men could be influenced by physicians’ description of treatments. For example, a surgery-oriented urologist may mention AS but then emphasize that the impotence side effect could be avoided by a competent surgeon and that remedies are available to face treatment-related sexual dysfunctions [16]. A recent work [40] highlighted the importance of the messages that physicians give to patients. Specialists who straightforwardly describe observational options as a reasonable alternative can help patients in considering AS.

The agreement among different physicians can influence the DM process; in case of lack of agreement and inconsistencies between different clinical consultations, patients can feel a sense of non-control, anxiety and confusion.

Informal sources of information such as media and the Internet represent important external factors that have an impact on the AS decision. Patients want to be informed; hence, they could arrive at the first visit after diagnosis with all of the information they gathered on the web, TV, newspapers and magazines. The Health Information National Trends Survey data [41] portrayed a shift in the ways in which patients consume health and medical information, with more and more patients looking for information online before talking with their physicians [42]. Younger men (age 65 or younger) are more likely to engage in web-based search for answers to their doubts [43]. However, older patients may be supported by their family members in searching on the Internet. Patients use many sites to access different types of information. The advantages of the Internet searches are that men can find help in dealing with the diagnosis, taking charge of the DM process and reducing anxiety [44, 45]. The other side of the coin is that men could also gather misleading information from media [45, 46]. It would be helpful to examine in-depth the impact of Internet-gathered information on the decision to select AS.

Finally, it should be considered that in some countries, where the access to care is not provided by the national health care system, treatment financial costs may influence treatment/AS DM [19].

Why (and Why Not) Do Patients Choose AS?

For men who are offered the option of AS, further variables come into play and the DM process can be more challenging. Some factors can represent important levers for patients to choose AS, and some others can hinder the choice of AS. Keeping in mind both the main motivations leading patients to choose AS and the main obstacles and barriers can be crucial in order to overcome selection biases and support an aware choice [47].

Even though the healthcare staff seems to have an often obvious rational underlying the selection to join an AS protocol, patients and their families may have the sensation of “not treating” [48] a life-threatening illness during a first and more treatable stage, which may appear a highly unreasonable choice [24]. First of all, personality and personal attitudes towards illness and feeling of uncertainty can be a very relevant reason why men not choose AS: men may think “wait and see” is not their typical way of fixing problems [29]. The idea of not acting immediately to try to eradicate what is still referred to as the “evil”, the “dangerous killer” [49], or that one is sitting on the “crater of a volcano”, can effectively trigger feelings of intense anxiety, particularly linked to the reality of living with such a disease, the consequent uncertainty of the outcome as well as a strong sense of lack of control [50]. Van den Bergh et al. [51] found that the most frequent reported disadvantage of AS was the risk of disease progression; patients reported negative feelings in losing control over their treatment decisions, distress and desire for a more active participation in disease management. Uncertainty and fear of cancer could also be the major reasons that lead patients to drop out from AS [52].

Risk perception is another component of the internal set of characteristics that impact the DM process; the term “risk perception” refers to the patients’ representation of the potential harm of their cancer in the future. Unfortunately, to the best of our knowledge up until now, studies on this issue are few. From our clinical experience in a multidisciplinary care team, patients’ risk perception seems to be a crucial factor guiding DM. While from clinicians’ perception the communication of a 3 + 3 Gleason pattern score and the opportunity of AS should be reassuring for the patient and his family, on their side patients may still create a scenario where developing metastases could occur from one day to another.

Demographic characteristics could represent further barriers to the adherence to AS protocol. Patients’ age has been discussed as a relevant reason why men not choose AS [53]. Typically, physicians recommend active treatment to younger patients. However, younger patients are likely to be the ones mostly advocating to be active members of treatment DM process given their extended life expectancy. For this reason, decision to join or not to join AS should be extensively discussed with them [54].

Another barrier that should draw clinicians’ attention is the family system; family members can be very influential in treatment DM, as by far most patients consult with their spouses or significant others before making treatment choice [55, 56]. It is not unusual for some patients to report pressure from family members to pursue a more aggressive treatment, leading to the exclusion of AS as a viable option [57].

The experience of other cancer patients is an important reason to exclude AS; anecdotal and others’ experiences could elicit fear of cancer and of its consequences.

Last but definitely not the least, physicians play a key role in guiding patients’ treatment DM and, in turn, in patients’ final decision [58]; in particular, physicians’ recommendation is often identified as one of the most important factors driving the DM process against AS protocol [18, 26, 53, 59]. Physicians should present unbiased information in their discussion with patients as a significant proportion of AS candidate could be denied access to this option solely because of their physician’s attitude towards it [60] and because of a general lack of medical support [61]. A hurried and inaccurate flow of information between the doctor and patient is therefore likely to affect access to AS. Few patients opt for AS because the physicians recommended it as the best option for them [18]. Nevertheless, a study from Gorin et al. [60] on men on AS showed that physicians’ influence was the greatest contributor (73%) to patients’ decision to elect the treatment, followed by avoiding incontinence consequences (48%) and erectile dysfunction (44%). Patients who elect AS are mostly motivated by the desire to maintain their quality of life and delay the potential effects of active treatments [18, 24, 51, 62].

In summary, receiving a cancer diagnosis may catapult patients in a state of urgency, driving them to request rapid and concrete interventions; this scenario is also typical in case of low-risk PCa diagnosis despite the lack of a significant threat for survival. Basically “staying with the uncertainty” means “taking a risk for the future”, and in case patients do not receive enough support and reassurance, fear can guide the decision.

We conclude that there are both internal and external reasons why men choose and not choose AS; interventions are needed to prevent bias from external pressures and to support psychological distress related to treatment/AS DM, thus overcoming the barriers to AS.

How to Overcome Barriers to AS

Important barriers can hinder the patients’ choice of AS – as demonstrated by the low uptake of AS among potentially eligible men [37, 6365] – and can consequently reduce the possibility for patients to select AS even when it would be a suitable choice reflecting the patient’s preferences. As a result, patients risk making an unaware and uninformed choice, which is often an unsatisfactory choice. This can lead to difficulties in driving the selected choice forward and, consequently, to poor health outcomes. Following these premises, it is evident how overcoming barriers to patients’ selection of AS can be of vital importance for patients to travel to the chosen treatment option at best and for healthcare systems to reduce costs of improper use of services [66].

How can barriers to AS be overcome ? How can patient selection in AS be optimized? Sustaining PCa patients’ ability to make an aware and informed choice and making patients main actors of the process of DM needs that patients are properly equipped – first of all, with regard to information given – and that a shared decision-making (SDM) process is supported by healthcare professionals. The selection of the optimal treatment strategy implies two main assumptions, i.e. informing patients about the multiple reasonable available options and thoroughly discussing options while taking into consideration their own preferences and values [12]. The benefits of similar efforts can be very important. In fact, literature showed that better-informed patients tend to improve preference for no active treatments [67] and applying a SDM process allows even more fair and ethical choices to be sustained [68, 69].

Give a Map: Better Information, Better Equipment to Optimize Patients’ Choices

It is impossible to choose an option, if one does not know that there is an option and that this option is reasonable [40]. Receiving and understanding the complex information about treatment options and outcomes is a necessary condition for patient participation in the treatment decision process [70]. Patients desire this information; they need to know how to care for themselves and for their health [71]. Furthermore, if patients are not informed, they will be unable to assess “what is important to them” and so to establish informed preferences [72]. Establishing informed preferences and taking a shared decision is a multiphased journey which necessarily starts from making patients aware of what is happening to them and of what they can do to handle the situation.

The clinical encounter is a critical and pivotal event in this sense [72, 73]. The first goal of this encounter is to provide patients with information on what is happening to them. Starting from what patients know can facilitate defining where they are, which information they already have and whether these are correct [72]. And yet, the information “you are here” is useful but not enough to get the patient to make an aware choice. Patients should be given a “map”. Thereafter, a clear and balanced presentation of relevant, reliable and evidence-based information should be assured. First of all, information concerning the care process should be provided. Second, all the treatment options should be explored and presented. This is an important moment to make AS a reasonable option and reduce the potential biased imbalance for AS [40]. Finally, patients need to be informed on all the relevant advantages and risks of each option. Disease-related outcomes are in first line, but also information on sexual, psychosocial and lifestyle changes are important for patients [54, 61, 71].

As previously highlighted, it is important to consider that the clinical encounter is not the one and only place for information exchanges: patients seek information also in other moments and from different additional sources [73]. If properly supported and reliable, that information can be an important supplement able to enhance patients’ skills in managing the clinical encounter and the disease’s turning points as best as they can. Indeed, providing information in different alternative formats can make relevant health messages more effective [74]. Educational activities and health information-seeking behaviours before and after the clinical visit have been proved to improve participation levels in treatment DM and psychological autonomy [73]. Last but not least, receiving information from additional sources has been demonstrated to make the choice of AS more trodden [73], confirming the key role of different health information in fostering a fair and aware choice.

The Role of Decision Aids (DAs)

Throughout the years, several aids have been developed to allow low-risk PCa patients making an informed choice [7579]. These tools are specifically developed to support the DM pathway  – particularly, the low-risk PCa patients one [77] – with the advantages of being equitable, evidence-based and not biased. Reviews of these aids [7680] reveal that summarizing information is the main function generally covered. As showed above, providing reliable and balanced information is a necessary condition for DM. DAs might help ensuring that patients will receive clear, well-structured and complete information on PCa and treatment options. Booklets or leaflets, Internet pages managed by advocacy associations or web sites and informative videos or DVDs have been developed with this aim, and evidences suggest that they can increase patients’ knowledge and accurate risk perception [79]. However, evidence on aids for informational purposes only are limited [81], as DM does not end with providing information. Decision aids can help further catalyze the DM process since they can provide an additional pivotal function: summarizing pros and cons of the different options and helping patients weigh them based on their preferences and values. Similar tools generally include preference or value clarification exercises or guided steps for treatment decisions, which can help eliciting the patient’s lens and can help patients making value-based choice. Examples of tools including a value elicitation component are those based upon the Ottawa Decision Support Framework [89]. These are evidence-based, take-home, self-administered tools aimed at increasing the likelihood that patients’ decisions are based on better knowledge, realistic expectations and personal values through simple-to-follow tasks and exercises [80, 82]. Similar tools including value clarification exercises can have further positive consequences on man’s well-being. Indeed, they can help in lowering the decisional conflict related to feeling uninformed and unclear about one’s values, with a consequent decrease of anxiety and uncertainty [79, 80]. Even more, they can help patients taking a proactive role in the DM process [79, 80], improving the rates of patients choosing an option congruent with their values. Finally, they can improve communication with healthcare professionals [83]. More complex and detailed DAs, including both informational and decisional support, have thus been proved to be more effective than those supporting only information [83]. Even more , reviews revealed that not all of the aids discussed AS [37]. Up-to-date DAs have often given little attention to AS [84], and there is still a need for new DAs that highlight AS as a reasonable option. For example, narrative framing (i.e. providing key messages to propose AS as an acceptable choice) is suggested as a useful technique to be included in DAs to sustain the reasoned adoption of AS in clinical practice and to reduce the imbalance for overtreatment [75, 85]. The advantages of DAs for DM can be huge. However, to date some limitations in DA development and delivery may hinder the opportunity of these tools to allow an informed DM to be realized. Scholars must develop a new generation of decision support interventions addressing both the informational and the preference-support aims, including AS as a reasonable option, systematically developed, methodologically sound and consistent with the international guidelines (i.e. the International Patient Decision Aid Standards) [79]. Furthermore, barriers to implementation in clinical practice of such tools need to be urgently overcome, and there is a need for studies aimed at understanding how to best implement those tools in clinical practice [79].

Patients and clinicians can take advantage of DAs, i.e. tools that have been developed in order to provide clear, well-structured and complete information on PCa. Booklets, Internet pages managed by advocacy associations and informative videos, they can all increase patients’ knowledge [86]. DAs that include explicit values clarification exercises improve informed and value-based choices with positive consequences in terms of lowering the decisional conflict and increasing the levels of engagement and the rates of patients choosing an option that is congruent with their values [83].

Co-drive: Decision-Making Is a Double-Deck Call

Educating the patient and fully informing him about the different treatment options and outcomes is surely a first essential step to ensure that decision is taken on responsibility of the patient and that all the options are equally considered [67]. However, this is not enough to guarantee that patients are engaged in the DM process and that they would make an informed, individualized and reasoned decision based on their realistic values and preferences. Only informing patients is not enough; we need to consider patients’ personal interpretation of decisions. This statement is supported by literature on DAs and also by that on SDM [66, 83]. Considering patients’ values and preferences is particularly important in the context of low-risk PCa where decisions are highly preference sensitive. Listening to the patient’s voice can thus allow patients making “the best choice for them”. Patient values about the pros and cons of the different treatment options need to be elicited, explicitly understood and incorporated into decisions. Furthermore, since perceptions of outcomes are shaped by how patients perceive themselves in that specific life moment, personal factors need to be considered too [73]. This means considering patients as persons who are the main actors of their care and communicating with them not only about medical factors but also about personal ones. “Where would you like to go?” and “How can I help you get there?” are metaphorically the questions that should be addressed. Finally, it is important to consider that the option of AS starts out with disadvantages because of the conventional wisdom that cancer needs an urgent treatment and that delaying it can put the patient at risk [40]. In this sense, patients’ values and expectations for care need to be explored and balanced in a direction that is aligned with the evidence-based guidelines for low-risk PCa treatment. This means that a personal appraisal of information about treatment choices requires not only supporting but also guiding. Patients need a co-driver. DAs can support this co-driving, but they cannot replace it. Patients need someone expert (i.e. the physician) who will work in tandem with them and share the responsibility of both offering and requesting information in order to reach a SDM process [68]. Serving as a co-driver for patients necessarily means shifting from a paternalistic paradigm where the physician makes decisions and then informs the patient (paternalistic model) to a new approach to care where patients are considered partners in the care management and in the DM process [87]. This means not only that an informed decision should be reached by patients (informed model) but that this decision is shared and discussed in a journey where healthcare professionals colead with the patient [88]. In the SDM process, professionals – as well as the wider network of the patient – collaboratively work with the patient throughout the different steps of the DM process (i.e. information exchanges, preferences’ elicitation, deliberation about treatment, final decision) to make the deliberation process a success and, thus, to arrive to a shared informed decision [88, 89]. They recursively share information, jointly participate in the DM and agree in a course of action that incorporates the patient’s informed personal preferences [90, 91]. All the involved actors work towards reaching an agreement, and all have an investment and engagement in the decision. The resulting SDM process is thus iterative and recursive and allows moving from an initial preference guided by patients’ lay values and expectations to a patient’s expert and informed preference. Co-driving with patients in the SDM process is thus a good deal. There are some real questions that could be useful to effectively guide patients to reach a shared informed decision (e.g. “Which benefits and harms matter most to you?” or “Who can support and advise you in making a choice?”). Figure 14.2 reports a toolkit of questions that we have been using to support AS DM and that we developed based on four main areas of the SDM process as based on the Ottawa Decision Support Framework [89] (i.e. identify the decision and the different options, identify pros and cons of the different options, weigh pros and cons of the different options, identify needs for support in DM).


Fig. 14.2
Treatment vs AS DM: Questions to engage patients in a SDM process

But why should a similar process be adopted? Literature evidences show that there are huge benefits to adopting SDM in clinical practice. SDM has indeed the potential to reduce overtreatment and to sustain more fair and ethical choices [68, 69], as well as to improve patient satisfaction and health outcomes [92]. SDM is currently considered paramount from an ethical perspective to begin with and a way of enhancing patient engagement and activation [93]. Not surprisingly considering these findings, SDM is being included in different healthcare policies and guidelines for PCa as hallmark of good clinical practice (i.e. American Urological Association, American Cancer Society and the US Preventive Services Task Force) [90, 91]. It is however still difficult to effectively apply it in practice. Patients more and more want to play an active role in the DM and desire to collaborate with professionals [71, 9497]. Professionals, in turn, need to be engaged in a similar effort and should be trained to recognize the value of SDM [9496].

Shared Decision-Making: Better if Multidisciplinary

Objective evidence and patient preference guide treatment decisions in low-risk PCa, but specialists’ bias guide them too [37, 60]. Particularly where evidence does not strongly support a single clearly superior option, simultaneously meeting the different specialists can help ensuring that specialty bias is avoided. For these reasons, multidisciplinary team care has been increasingly incorporated into PCa clinical practice [2, 98]. In multidisciplinary team care, visits are managed by different specialists (e.g. surgeon, radiation oncologist, medical oncologist, psychologist) who work in chorus to afford patients the opportunity to discuss the different options in an interactive fashion and to make informed decisions consistent with their goals of care [38]. In similar clinical encounters, power roles are reorganized in a more balanced and democratic way, and patient centeredness is ensured [99]. As such, multidisciplinary SDM in PCa management has been proved to overcome clinicians’ preferences and bias and thus improve selection of AS among patients [37]. High satisfaction rates of patients are reported in studies exploring the adoption of this approach as well as enhanced outcomes and reduction of treatment regret [100].

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Feb 9, 2018 | Posted by in Uncategorized | Comments Off on Better-Informed Decision-Making to Optimize Patient Selection
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