Identifying opportunities to support patient-centred care for ductal carcinoma in situ: qualitative interviews with clinicians

Ductal carcinoma in situ (DCIS), which comprises up to 25% of all screen-detected abnormalities, includes a spectrum of abnormal cell types confined to the breast ducts with variable natural history, and risk for progression and recurrence [1‐4]. Because there is no test to establish whether DCIS will progress to invasive breast cancer, recommended treatment for DCIS is similar to invasive breast cancer and includes surgery (lumpectomy or mastectomy) with or without adjuvant radiation or hormone therapy [5, 6]. Adequately treated DCIS has a favourable prognosis, with 20-year breast cancer specific mortality rate of 3.3% (95% CI 3.0 to 3.6) [7]. Therefore, the goal of treatment is to prevent progression to invasive breast cancer, or DCIS recurrence that may progress, while also conserving healthy breast tissue and minimizing unnecessary harm.

Despite the good prognosis, women with DCIS have long-lasting confusion and anxiety about their diagnosis and treatment [8‐10]. For example, in a cross-sectional survey of 144 women diagnosed with DCIS in Australia, many were unsatisfied with information provided and reported misperceptions of risk; 60.0% incorrectly thought DCIS would metastasize, only 19.0% knew that not all women with untreated DCIS would develop invasive cancer, and 43.0% worried about dying from their disease [11]. Similarly, research found that women with DCIS have comparable concerns about dying from breast cancer and experience similar psychosocial distress as women with invasive breast cancer [12].

In contrast to the numerous studies exploring the experiences of women with DCIS, we found only three studies that examined how physicians approach DCIS discussions. When surveyed, 22% of 296 physicians in England, and 78% of 151 physicians in the United States reported difficulty explaining DCIS and treatment options to women [13, 14]. Both studies also found that communication practices varied across physicians including whether DCIS was described as cancer, a particularly confusing issue for women contributing to psychosocial distress. More recently, a mixed-methods study found that variation in DCIS terminology among surgeons was influenced by seniority and geographical region within England [15]. These studies were conducted a decade ago and may not reflect current views or practices, findings may not apply beyond the United States and England, and survey data did not fully explore the challenges that physicians experienced or their views on how to improve DCIS discussions.

Patient-centred care (PCC) offers a promising approach for optimizing patient health care experiences and outcomes. PCC is defined as care that informs, educates, engages and activates patients and their family/care partners consistent with their clinical needs, life circumstances, and personal preferences [16]. Considerable research shows that PCC has enhanced multiple patient outcomes across numerous conditions and settings including improved communication and relationship with providers, service experience, knowledge, and quality of life, and reduced anxiety, missed work, readmission rates, and mortality [17‐19]. For example, a randomized controlled trial of communication training for both cancer patients and physicians increased patient engagement, and discussion of emotions, prognosis, and treatment choices (0.34, 95% CI 0.06–0.62, p = 0.02) [20].

PCC is widely advocated [21, 22], and could support and improve patient-clinician communication about DCIS. Our recent scoping review of research published from 1997 to 2016 on DCIS communication found no studies that implemented or evaluated interventions to facilitate PCC for DCIS [23]. Hence, research is needed to generate detailed insight that would inform intervention development. The purpose of this study was to interview clinicians who care for women with DCIS, and characterize challenges that influence DCIS communication and the type of interventions needed to facilitate patient-centred discussions. By identifying patient-centred approaches to support women and/or clinicians that could be broadly implemented, ultimately this may improve patient care experiences among women with DCIS, and psychosocial outcomes among DCIS survivors.

By comparing self-reported communication practices against a cancer-specific, comprehensive PCC framework [34], this study identified that many clinicians refer to DCIS as cancer, and experience difficulty and frustration in describing DCIS and justifying the need for treatment in a way that is understood by patients. While they recognize that women experience confusion and anxiety, they are unable to offer supplemental help because information, patient navigators and support groups for DCIS are not available. Despite these issues, clinicians said they did not need or would not use communication tools or training to support or improve PCC for DCIS.

Clinicians in our study and elsewhere [13, 14] used inconsistent and conflicting terminology to describe DCIS. The present study provides additional insight regarding the basis of this variation; use of labels may depend on ones’ interpretation of DCIS as either unique from or similar to breast cancer. Referring to DCIS as cancer contributes to patient confusion, anxiety, and distress, leading to reduced health-related quality of life and undermining informed decision-making [11, 37, 38]. Others have advocated that more nuanced nomenclature for DCIS be developed [39]. Research is needed to explore the benefits and harms of various labels for DCIS through input from women and clinicians to optimize language for DCIS. Greater clarity and consistency in language used to describe DCIS may help clinicians when discussing DCIS and improve the patient experience.

Clinicians in our study who described communication challenges and lack of high-quality information tools said they would not benefit from DCIS communication tools.. Decision aids can support patients in shared decision-making by eliciting preferences about treatment options and associated outcomes, but analysis of 21 decision aids for women with early-stage breast cancer revealed that many failed to comply with widely-used decision aid standards; offer data on outcome probabilities, information essential to decision-making; or offer guidance on how to elicit patient preferences [40]. Furthermore, a cohort study found that most patients given a self-administered decision aid reviewed the information, but few made notes or answered questions as prompted by the decision aid, or shared that information with their doctors [41]. Shared decision-making constitutes only one of six domains in the PCC framework, which may explain the limited uptake. Further research is needed to understand what type of communication aid would better support patient-centred discussions about DCIS.

Participating clinicians also said they would not benefit from training to improve communication about DCIS. Research in both chronic conditions and oncology suggests that physician communication training can change behaviour and improve patient outcomes. For example, a randomized controlled trial found that training interventions targeted to both oncologists and cancer patients significantly improved patient-provider communication [20]. Similarly, a Cochrane systematic review found that PCC training for clinicians transferred and improved communication skills among clinicians, resulting in greater engagement of patients in discussions and decision-making [42]. In particular, the review found that short-term training (< 10 h) was as successful as lengthier training, which may encourage clinicians to participate [43]. Further research is needed to develop and evaluate training aimed at patients and/or clinicians that could structure and improve patient-clinician communication by more fully addressing PCC domains and sub-domains. A Cochrane systematic review of interventions to support PCC based on 43 randomized controlled trials found that educational material showed greater benefit in patient behaviour, satisfaction, and outcomes, and on the communication process when aimed at both patients and clinicians rather than targeting one group only, an approach that may overcome clinician reluctance by empowering patients to be better prepared for and take part in DCIS discussions [42].

Similar to previous research [11], clinicians in the present study reported that women with DCIS are often confused and would benefit from having access to patient navigators (PNs), however, PNs were not always available to women with DCIS. The role of PNs may provide patients and physicians with support to improve patient care experiences. The navigation role provides a measure of security and familiarity through continuity of care and integrates multiple areas of care coordination, including streamlining medical appointments, providing education and assisting with access to financial services and psychological support throughout and following treatment [44, 45]. In cancer care, research shows that patients who had access to PNs reported fewer problems with care and improved delivery of PCC [46, 47]. There are several barriers to implementation of PNs, including availability of trained PNs, distribution of PNs across rural or remote regions, and health care costs associated with use of PNs. Although PNs have traditionally been nurses, they can also be social workers, volunteers or previous patients [48]. Training for PNs is not yet regulated or required in some jurisdictions; however, PN training developed by the National Cancer Institute [49] was designed for individuals with no prior health care experience and can be delivered over a 3-day training period [48]. Thus, strategies are available to increase the number of trained PNs over a short training period. Because PNs may be scarce in rural or remote regions, future research should investigate the value of access to PNs by telephone or an online service for women with DCIS [50, 51].

This study was the first to thoroughly explore the communication practices and perceptions of clinicians who care for women with DCIS. We employed rigorous methods, [24, 25, 28, 29] and adhered to qualitative research reporting standards [27]. Other strengths include the diversity of participants (geographic region, specialty, years in practice, setting), and achieving informational saturation, which enhances transferability of the findings. Members of our research team included practicing clinicians who care for women with DCIS; they independently analyzed and interpreted study findings, offering critical, real-world feedback to enhance insight and recommendations. Some limitations of the present study must be noted. Although we invited many clinicians with various characteristics, a small proportion responded as is common in qualitative research; thus, there may be potential for responder bias, meaning that clinicians who were especially interested in DCIS or PCC agreed to be interviewed, which may have influenced responses. Despite our recruitment efforts, only 7 of 46 participating clinicians practiced in non-academic facilities, so the views and experiences of academic clinicians represented the majority of our findings. Given that all participants practiced in Canada, the findings may not be relevant elsewhere. The McCormack et al. PCC framework is not necessarily a “gold standard”, [34] but as the most comprehensive PCC framework reflecting the priorities of cancer patients, it offered a basis for further interpreting study findings. While this article did not compare or correlate clinician findings with the views of women with DCIS, we have conducted focus groups with DCIS survivors and will report that data elsewhere.

By interviewing clinicians who care for women with DCIS and comparing their self-reported practices to a comprehensive, cancer-specific PCC framework, this study identified numerous frustrating communication challenges experienced by clinicians and variability in communication practices across clinicians. Although clinicians said they did not need or want communication interventions, the findings represent currently-unmet opportunities by which to help clinicians enhance PCC for DCIS including exchanging information, managing uncertainty, recognizing and responding to emotions, making decisions, and enabling self-management. Findings also underscore the need for supplemental information and supportive care specific to DCIS.