National consensus recommendations on patient-centered care for ductal carcinoma in situ

Gagliardi, Anna R.; Wright, Frances C.; Hong, Nicole J. Look; Groot, Gary; Helyer, Lucy; Meiers, Pamela; Quan, May Lynn; Urquhart, Robin; Warburton, Rebecca

doi:10.1007/s10549-019-05132-z

Cited by 8 publications

(10 citation statements)

References 39 publications

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“…At the same time, women identified or suggested approaches by which clinicians can more consistently achieve PCC for DCIS. Those recommendations are consistent with national consensus recommendations on PCC for DCIS generated by Delphi process involving 30 clinicians of multiple specialties who manage DCIS and 32 DCIS survivors …”

Section: Discussionsupporting

confidence: 68%

Recommendations to improve patient‐centred care for ductal carcinoma in situ: Qualitative focus groups with women

Nyhof

Wright

Hong

et al. 2019

Health Expectations

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Background Patient‐centred care (PCC) improves health‐care experiences and outcomes. Women with ductal carcinoma in situ (DCIS) and clinicians have reported communication difficulties. Little prior research has studied how to improve communication and PCC for DCIS. Objective This study explored how to achieve PCC for DCIS. Design Canadian women treated for DCIS from five provinces participated in semi‐structured focus groups based on a 6‐domain cancer‐specific PCC framework to discuss communication about DCIS. Data were analysed using constant comparative technique. Setting and Participants Thirty‐five women aged 30 to 86 participated in five focus groups at five hospitals. Results Women said their clinicians used multiple approaches for fostering a healing relationship; however, most described an absence of desired information or behaviour to exchange information, respond to emotions, manage uncertainty, make decisions and enable self‐management. Most women were confused by terminology, offered little information about the risks of progression/recurrence, uninformed about treatment benefits and risks, frustrated with lack of engagement in decision making, given little information about follow‐up plans or self‐care advice, and received no acknowledgement or offer of emotional support. Discussion and Conclusions By comparing the accounts of women with DCIS to a PCC framework, we identified limitations and inconsistencies in women's lived experience of communication about DCIS, and approaches by which clinicians can more consistently achieve PCC for DCIS. Future research should develop and evaluate informational tools to support PCC for DCIS.

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Section: Discussionsupporting

confidence: 68%

Recommendations to improve patient‐centred care for ductal carcinoma in situ: Qualitative focus groups with women

Nyhof

Wright

Hong

et al. 2019

Health Expectations

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“…20,34 Although multiple online educational resources do exist for patients diagnosed with DCIS, few have focused on enhancing communication between patients and providers to support optimal decision-making about DCIS treatment. 35,36 Decision support tools, which can help patients to weigh the risks and benefits of different treatment options while accounting for individual preferences, represent a promising approach. An interactive decision support tool (https://dciso ptions.org/dst) was recently developed for this purpose and is available to women diagnosed with DCIS who are considering their treatment options.…”

Section: Discussionmentioning

confidence: 99%

“…There is also evidence that communication with a provider is positively related to the likelihood of patients with breast cancer more correctly estimating their risk of recurrence 33 . However, communicating cancer‐related risk is complex, and improved methods to effectively communicate information about DCIS and its associated risks to those affected should be a priority 20,34 . Although multiple online educational resources do exist for patients diagnosed with DCIS, few have focused on enhancing communication between patients and providers to support optimal decision‐making about DCIS treatment 35,36 .…”

Section: Discussionmentioning

confidence: 99%

“Is it cancer or not?” A qualitative exploration of survivor concerns surrounding the diagnosis and treatment of ductal carcinoma in situ

Rosenberg

Gierisch

Revette

et al. 2022

Cancer

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BACKGROUND:Of the nearly 50,000 women in the United States who undergo treatment for ductal carcinoma in situ (DCIS) annually, many may not benefit from treatment. To better understand the impact of a DCIS diagnosis, patients self-identified as having had DCIS were engaged regarding their experience. METHODS: In July 2014, a web-based survey was administered through the Susan Love Army of Women breast cancer listserv. The survey included open-ended questions designed to assess patients' perspectives about DCIS diagnosis and treatment. Deductive and inductive codes were applied to the responses; common themes were summarized. RESULTS: Among the 1832 women included in the analytic sample, the median age at diagnosis was 60 years. Four primary themes were identified: 1) uncertainty surrounding a DCIS diagnosis, 2) uncertainty about DCIS treatment, 3) concern about treatment side effects, and 4) concern about recurrence and/or developing invasive breast cancer. When diagnosed, participants were often uncertain about whether they had cancer or not and whether they should be considered a "survivor." Uncertainty about treatment manifested as questioning the appropriateness of the amount of treatment received. Participants expressed concern about the "cancer spreading" or becoming invasive and that they were not necessarily "doing enough" to prevent recurrence. CONCLUSIONS: In a large, national sample, participants with a history of DCIS reported confusion and concern about the diagnosis and treatment, which caused worry and significant uncertainty. Developing strategies to improve patient and provider communications regarding the nature of DCIS and acknowledging gaps in the current knowledge of management options should be a priority.

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“…While some experts have advocated for changes to terminology for lesions with low malignant potential [86], other experts argue that use of non-cancer labels may be deceptive and limit informed decision-making [87]. Using a two-round Delphi of 27 women with DCIS and 29 clinicians, we generated Canadian consensus recommendations on PCC for DCIS, which included a recommendation to refine DCIS nomenclature [88], In future research, we plan to engage international experts including DCIS survivors, clinicians, cancer staging and classification agencies, cancer societies, and breast cancer trials groups and advocacy groups in identifying the potential benefits and harms of various DCIS labels.…”

Section: Discussionmentioning

confidence: 99%

Quality of DCIS information on the internet: a content analysis

Blackwood

Wright

Hong

et al. 2019

Breast Cancer Res Treat

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Purpose Women with ductal carcinoma in situ (DCIS) experience lingering confusion and anxiety, and may use the Internet for supplemental information. This study assessed the content and quality of DCIS information on the Internet. Methods We searched Google for English-language, publicly available DCIS information tools published from 2010 to current by non-profit organizations. We summarized tool characteristics, DCIS labels, and information important to women with DCIS corresponding to domains of a patient-centred care (PCC) framework. Tool quality was appraised with the DISCERN instrument. Results Of 39 tools included, most were plain language summaries published since 2016. Tools employed a median of 2.0 labels (range 1.0 to 5.0) for DCIS, most frequently non-invasive breast cancer (29, 74.4%), abnormal cells (14, 35.9%), pre-cancer (14, 35.9%), and early form of breast cancer (13, 33.3%). Tools addressed a median of 4.0 (range 2.0 to 5.0) PCC domains. Few tools contained content in the domains of fostering the relationship (30.8%), addressing emotions (41.0%), or follow-up (41.0%); 74.4% noted the risk of progression or recurrence but provided vague details. Tools were assessed as high (25.6%), moderate (48.7%), and low (25.6%) quality. Conclusions Few DCIS information tools available to women on the Internet meet quality criteria for consumer health information or address concerns of importance to women with DCIS. By identifying a range of poorly defined terms used to label DCIS, and specific content domains that were lacking, this study identified how existing tools could be improved, and identified higher-quality tools that clinicians can use when discussing DCIS with patients. Electronic supplementary material The online version of this article (10.1007/s10549-019-05315-8) contains supplementary material, which is available to authorized users.

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National consensus recommendations on patient-centered care for ductal carcinoma in situ

Cited by 8 publications

References 39 publications

Recommendations to improve patient‐centred care for ductal carcinoma in situ: Qualitative focus groups with women

Recommendations to improve patient‐centred care for ductal carcinoma in situ: Qualitative focus groups with women

“Is it cancer or not?” A qualitative exploration of survivor concerns surrounding the diagnosis and treatment of ductal carcinoma in situ

Quality of DCIS information on the internet: a content analysis

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