Marleen Kunneman

Deciding about (neo-)adjuvant rectal and breast cancer treatment: Missed opportunities for shared decision making

Background. The first step in shared decision making (SDM) is creating choice awareness. This is particularly relevant in consultations concerning preference-sensitive treatment decisions, e.g. those addressing (neo-)adjuvant therapy. Awareness can be achieved by explicitly stating, as the ‘reason for encounter’, that a treatment decision needs to be made. It is unknown whether oncologists express such reason for encounter. This study aims to establish: 1) if ‘making a treatment decision’ is stated as a reason for the encounter and if not, what other reason for encounter is provided; and 2) whether mentioning that a treatment decision needs to be made is associated with enhanced patient involvement in decision making. Material and methods. Consecutive first consultations with: 1) radiation oncologists and rectal cancer patients; or 2) medical oncologists and breast cancer patients, facing a preference-sensitive treatment decision, were audiotaped. The tapes were transcribed and coded using an instrument developed for the study. Oncologists’ involvement of patients in decision making was coded using the OPTION-scale. Results. Oncologists (N = 33) gave a reason for encounter in 70/100 consultations, usually (N = 52/70, 74%) at the start of the consultation. The reason for encounter stated was ‘making a treatment decision’ in 3/100 consultations, and ‘explaining treatment details’ in 44/100 consultations. The option of foregoing adjuvant treatment was not explicitly presented in any consultation. Oncologist’ involvement of patients in decision making was below baseline (Md OPTION-score = 10). Given the small number of consultations in which the need to make a treatment decision was stated, we could not investigate the impact thereof on patient involvement. Conclusion. This study suggests that oncologists rarely express that a treatment decision needs to be made in consultations concerning preference-sensitive treatment decisions. Therefore, patients might not realize that foregoing (neo-)adjuvant treatment is a viable choice. Oncologists miss a crucial opportunity to facilitate SDM.

What Is Shared Decision Making? (and What It Is Not).

Both the practice of medicine and the expectations of patients regarding their care are changing. A point of confluence is in the need for medicine to be more patient centered, and in the need for patients to be more involved in their care.1,2 This confluence is particularly pertinent when more than one reasonable approach is available to manage the patients situation, and when those approaches differ in ways that matter to patients.3 In shared decision-making (SDM), clinicians and patients work together to understand the patients situation and to determine how best to address it. Emergency medicine is not exempt from these trends. In this paper we seek to define SDM and its role in contemporary healthcare. Our goal is to set the stage for the active exploration of SDM in the care of patients in the emergency department. This article is protected by copyright. All rights reserved.

Decision consultations on preoperative radiotherapy for rectal cancer: large variation in benefits and harms that are addressed.

Background:For shared decision making to be successful, patients should receive sufficient information on possible benefits and harms of treatment options. The aim of this study was to evaluate what information radiation oncologists provide during the decision consultation about preoperative radiotherapy with rectal cancer patients.Methods:Decision consultations of 17 radiation oncologists with 81 consecutive primary rectal cancer patients, eligible for short-course radiotherapy followed by a low-anterior resection, were audio taped. Tapes were transcribed and analysed using the ACEPP (Assessing Communication about Evidence and Patient Preferences) coding scheme.Results:A median of seven benefits/harms were addressed per consultation (range, 2–13). This number ranged within and between oncologists and was not clearly associated with the patient’s characteristics. A total of 30 different treatment outcomes were addressed. The effect of radiotherapy on local control was addressed in all consultations, the effect on survival in 16%. The most important adverse effects are bowel and sexual dysfunction. These were addressed in 82% and 85% of consultations, respectively; the latter significantly less often in female than in male patients. Four out of five patients did not initiate discussion on any benefits/harms.Conclusions:Our results showed considerable inconsistency between and within oncologists in information provision, which could not be explained by patient characteristics. This variation indicates a lack of clarity on which benefits/harms of radiotherapy should be discussed with newly-diagnosed patients. This suboptimal patient information hampers the process of shared decision making, in which the decision is based on each individual patients’ weighing of benefits and harms.

Treatment preferences and involvement in treatment decision making of patients with endometrial cancer and clinicians

Background:Vaginal brachytherapy (VBT) in high–intermediate-risk endometrial cancer (EC) provides a significant reduction in the risk of local cancer recurrence, but without survival benefit and with increased mucosal atrophy. Five-year local control is estimated to be similar for VBT and a watchful waiting policy (WWP), in which patients receive VBT combined with external radiation in case of a recurrence. Our aim was to assess treatment preferences of EC patients and clinicians regarding VBT and WWP, and to evaluate their preferred and perceived involvement in treatment decision making.Methods:Interviews were held with 95 treated EC patients. The treatment trade-off method was used to assess the minimally desired benefit from VBT in local control. Patients’ preferred and perceived involvement in decision making were assessed using a questionnaire. Seventy-seven clinicians completed a questionnaire assessing their minimally desired benefit and preferred involvement in decision making.Results:Minimally desired benefit of VBT was significantly lower for patients than for clinicians (median=0 vs 8%, P<0.001), for irradiated than for non-irradiated patients (median=0 vs 6.5%, P<0.001), and for radiation oncologists than for gynaecologists (median=4 vs 13%, P<0.001). Substantial variation existed within the groups of patients and clinicians. Participants preferred the patient and clinician to share in the decision about VBT. However, irradiated patients indicated low perceived involvement in actual treatment decision making.Conclusions:We found variations between and within patients and clinicians in minimally desired benefit from VBT. However, the recurrence risk at which patients preferred VBT was low. Our results showed that patients consider active participation in decision making essential.

Shared Decision Making and Improving Health Care: The Answer Is Not In

Achieving health care of higher quality at lower cost has fueled policy interest in shared decision making (SDM).1 In SDM, clinicians and patients work together to understand the patient’s situation and determine how best to address it.2 Programs are in place in the United States to promote SDM using legal and financial incentives, mostly by implementing patient decision aids (PtDAs).1 The Cochrane review3 of SDM tools for people facing treatment or screening decisions is the key evidence cited in policy statements that propose to implement, distribute, and use certified PtDAs. There are at least 2 distinct types of SDM tools, PtDAs and conversation aids (sometimes called within-encounter decision aids).4 Typically, both types of tools describe the current science about a specific medical condition and about the available options to address it. However, they serve different purposes. Patient decision aids aim to provide patients with relevant information, improve knowledge, and encourage patient involvement in decision making. Thus, they directly assist patients in making their own decisions (so-called informed decision making), or indirectly in preparing them to participate in SDM conversations with their clinicians. In contrast, conversation aids are designed to encourage and directly support the conversations that patients and clinicians have when making decisions together.2 Their aim is to improve the quality of the SDM process rather than surrogate outcomes such as patient knowledge. For the last 16 years, an international team of researchers with the Cochrane collaboration has periodically updated meta-analyses summarizing results of the published randomized trials on SDM tools. In this issue of JAMA, Stacey et al5 summarize their recent Cochrane review of 105 randomized trials of SDM tools, focusing on 50 different decisions and involving a total of 31 043 participants. The authors found that PtDAs consistently improved patient knowledge of options and outcomes compared with control interventions (mean knowledge scores, 70% vs 57%, respectively; highquality evidence) and patient knowledge of risks (relative risk, 2.1; moderate-quality evidence) (control interventions included usual care, no intervention, general information, guidelines, and placebo interventions). Also, patients were more clear about what mattered most to them (mean difference, 8.8%; high-quality evidence). These results were consistent with earlier Cochrane reviews on SDM tools. Policy makers interested in improving the quality of care and reducing costs have promoted the use of PtDAs as a tactic to achieve patient-centeredness through SDM and to reduce the use of invasive and costly procedures, such as joint replacement surgery for knee osteoarthritis or coronary angioplasty for stable angina.6 Does the updated Cochrane review support these policy justifications? Stacey et al5 concluded that patients receiving an SDM tool (ie, a PtDA or a conversation aid) reported feeling more involved in decision making. However, only 10 of the 105 trials included in the review sought to estimate the effect of using SDM tools on achieving SDM. No trial of pre-encounter PtDAs assessed whether their distribution increased SDM. Five trials directly observed how patients and clinicians made decisions during consultations and found SDM tools were effective in promoting SDM. All 5 of these trials used conversation aids rather than PtDAs. The Cochrane review found inconsistent effects of PtDAs on health care use, outcomes, and costs. In particular, use of PtDAs did not consistently reduce the use of invasive or expensive treatments. Thus, the extent to which these tools can reduce costs remains unclear. Previous observational data suggesting that PtDAs may reduce health care use and cost were limited by confounding (eg, by observing a reduction in elective orthopedic procedures during the great recession7), by regression to the mean when procedures are overused, or by using PtDAs to reduce access to care. Informed patient choice with PtDAs, nonetheless, seems superior to restricting access (eg, preauthorizations, formulary restrictions) or restricting coverage for invasive and expensive treatments, which may prevent patients from receiving desired and helpful treatments. However, empowering patients who are ill to refuse their clinicians’ recommendations to correct health care overuse is also problematic. Health care should provide care for patients and should not use patients as a means to correct systemic problems. The review reveals important limitations in the evidence regarding SDM tools. For instance, only a small fraction of developed tools has been tested in published randomized trials. Patient-centeredness or even the quality of SDM processes were rarely ascertained. The lack of trustworthy evidence about the effects of SDM tools on quality of care and cost, however, should not be construed as evidence of no effect. In fact, policy makers may be willing to overlook these limitations in the body of evidence given the low cost and low risk of harm from implementing PtDAs. Although the low cost of these tools may reduce the evidence required to justify their use in practice, it does not eliminate the need for reliable evidence that their use is more likely than not to achieve the policy goals. Related article page 657 Opinion

Which benefits and harms of preoperative radiotherapy should be addressed? A Delphi consensus study among rectal cancer patients and radiation oncologists

BACKGROUND AND PURPOSE We previously found considerable variation in information provision on preoperative radiotherapy (PRT) in rectal cancer. Our aims were to reach consensus among patients and oncologists on which benefits/harms of PRT should be addressed during the consultation, and to assess congruence with daily clinical practice. MATERIALS AND METHODS A four-round Delphi-study was conducted with two expert panels: (1) 31 treated rectal cancer patients and (2) 35 radiation oncologists. Thirty-seven possible benefits/harms were shown. Participants indicated whether addressing the benefit/harm was (1) essential, (2) desired, (3) not necessary, or (4) to be avoided. Consensus was assumed when ⩾80% of the panel agreed. Results were compared to 81 audio-taped consultations. RESULTS The panels reached consensus that six topics should be addressed in all patients (local control, survival, long term altered defecation pattern and faecal incontinence, perineal wound healing problems, advice to avoid pregnancy), three in male patients (erectile dysfunction, ejaculation disorder, infertility), and four in female patients (vaginal dryness, pain during intercourse, menopause, infertility). On average, less than half of these topics were addressed in daily clinical practice. CONCLUSIONS This study showed substantial overlap between benefits/harms that patients and oncologists consider important to address during the consultation, and at the same time poor congruence with daily clinical practice.

Career development for early career academics: benefits of networking and the role of professional societies.

Whilst effective networking is vitally important for early career academics, understanding and establishing useful networks is challenging. This paper provides an overview of the benefits and challenges of networking in the academic field, particularly for early career academics, and reflects on the role of professional societies in facilitating networking.

Caring with evidence based medicine

Using evidence for kind and careful care

Older Cancer Patients’ User Experiences With Web-Based Health Information Tools: A Think-Aloud Study

Background Health information is increasingly presented on the Internet. Several Web design guidelines for older Web users have been proposed; however, these guidelines are often not applied in website development. Furthermore, although we know that older individuals use the Internet to search for health information, we lack knowledge on how they use and evaluate Web-based health information. Objective This study evaluates user experiences with existing Web-based health information tools among older (≥ 65 years) cancer patients and survivors and their partners. The aim was to gain insight into usability issues and the perceived usefulness of cancer-related Web-based health information tools. Methods We conducted video-recorded think-aloud observations for 7 Web-based health information tools, specifically 3 websites providing cancer-related information, 3 Web-based question prompt lists (QPLs), and 1 values clarification tool, with colorectal cancer patients or survivors (n=15) and their partners (n=8) (median age: 73; interquartile range 70-79). Participants were asked to think aloud while performing search, evaluation, and application tasks using the Web-based health information tools. Results Overall, participants perceived Web-based health information tools as highly useful and indicated a willingness to use such tools. However, they experienced problems in terms of usability and perceived usefulness due to difficulties in using navigational elements, shortcomings in the layout, a lack of instructions on how to use the tools, difficulties with comprehensibility, and a large amount of variety in terms of the preferred amount of information. Although participants frequently commented that it was easy for them to find requested information, we observed that the large majority of the participants were not able to find it. Conclusions Overall, older cancer patients appreciate and are able to use cancer information websites. However, this study shows the importance of maintaining awareness of age-related problems such as cognitive and functional decline and navigation difficulties with this target group in mind. The results of this study can be used to design usable and useful Web-based health information tools for older (cancer) patients.

Shared decision making and the internist.

In this narrative review, we locate within the tradition of great diagnosticians in internal medicine, a fundamental development in patient-centered care: shared decision making (SDM). In this way, we present SDM as a core component of the clinical method, one in which diagnosis of the situation and of the actions that resolve it is essential toward the practice of evidence-based medicine.