Introduction
Methods
Approach
Expert panel sampling and recruitment
Survey development
Data collection and analysis
Results
Respondents
Panelist category | Province | Subtotal (n) | ||||
---|---|---|---|---|---|---|
British Columbia | Alberta | Saskatchewan | Ontario | Nova Scotia | ||
Women | 8 | 3 | 3 | 8 | 5 | 27a |
Clinicians | 6 | 7 | 4 | 5 | 8 | 30 |
Surgeons | 2 | 3 | 1 | 3 | 2 | 11 |
Medical oncologists | – | – | 1 | – | 1 | 2 |
Radiation oncologists | 2 | 2 | – | – | – | 4 |
Radiologists | 1 | – | 1 | 2 | 2 | 6 |
Nurses or navigators | 1 | 2 | 1 | – | 3 | 7 |
Subtotal (n) | 14 | 10 | 7 | 13 | 13 | 57 |
Initial recommendations
Delphi results
PCC domain | Recommendations |
---|---|
Fostering patient–physician relationship Establishing a friendly, courteous, and comfortable relationship | Clinicians should discuss diagnosis and treatment with patients in a non-rushed fashion to foster trust Male clinicians should ensure that a female (i.e., clinician, staff, companion) is present during consultations for patients who express discomfort with male-only interaction Clinicians should encourage questions during and after the first meeting Clinicians should offer undecided patients the option of a repeat discussion of diagnosis and treatment Clinicians should inform patients of next steps and the timing of next steps prior to leaving the first meeting Patients should be offered the opportunity to provide voluntary feedback about the quality of care they receive during and upon conclusion of their treatment (women only) |
Exchanging information Words or language used to discuss DCIS | A consensus guideline should be developed to establish the language that clinicians should use when describing DCIS Clinicians should discuss diagnosis and treatment with patients using layman terms if the patient has no clinical background Clinicians should provide patients with pamphlets (or other paper or electronic resource) to take home to further facilitate understanding of DCIS Clinicians should involve a translator in consultations with patients who may have language barriers to understanding DCIS if such resources are available Clinicians should check if patients understand what DCIS is, and the meaning of terms used to describe DCIS, and identify and address inaccurate perceptions Clinicians should use diagrams during consultations to facilitate patient understanding of DCIS (women only) A communication aid should be developed and used to help patients and clinicians discuss DCIS (women only) Family doctors referring patients to specialists should ensure patients are aware of their diagnosis before seeing the specialist (women only) |
Responding to patient emotions Response to or managing emotional reaction | Clinicians should acknowledge that a diagnosis of DCIS can be stressful and evoke an emotional response Clinicians should encourage patients access emotional support including counseling and support groups even if patient do not seem outwardly emotional (women only) Clinicians should have a patient navigator or nurse available during or at the end of an appointment to answer questions, help patients process information, and provide information for support groups (women only) |
Managing uncertainty Describing likelihood of DCIS turning into invasive cancer or likely prognosis | Conversations about DCIS should include information and/or statistics about the risk of recurrence, metastasis, progression to invasive disease, and prognosis The risk of recurrence or progression with and without additional therapy should be quantified and presented in absolute terms over a 10- or 20-year time frame Clinicians should mention the possibility of invasive disease that biopsy may not detect when there is a reasonable possibility of sampling error Surgeons and oncologists should work closely together so that each conveys to the same patient consistent information about treatment options and risks |
Making decisions Involvement in discussing and/or choosing treatment | Clinicians should recommend a treatment option but explain why the option is best suited to patient and tumor characteristics Clinicians should ask questions about lifestyle and views about risks/outcomes to gain a better understanding about patient preferences Clinicians and patients should work together to discuss the merits of treatment options and jointly make a decision about the best option but ultimately it is the patient’s decision to make Clinicians should give patients a week to make a treatment decision Surgeons should refer patients before surgery for consultation with a radiation oncologist if considering lumpectomy, and offer referral to a plastic surgeon if considering mastectomy or lumpectomy Clinicians should explain that, even though patients may want mastectomy or prophylactic mastectomy, it may not be necessary Conversations about treatment options should include information about possible side effects that may occur after treatment such as worsened body image, anxiety, or depression A guideline of DCIS treatment options should be developed to facilitate patient–clinician discussions Educational resources should be made available for DCIS patients considering reconstruction after mastectomy Clinicians should explain that, even though DCIS is not cancer, treatment is necessary to achieve a bigger margin and prevent progression to invasive cancer if applicable to patient (women only) Clinicians may employ a decision aid when discussing treatment options with patients (women only) Regional breast centers should be developed that provide patients with access to various treatment options and supportive care resources so that treatment decisions are not based on avoiding travel time and associated costs (women only) |
Enabling patient self-management Setting expectations for follow-up; preparing for self-managing health and well-being | Patients should be aware of their follow-up plan before leaving the care of their surgeon Clinicians should provide patients with pamphlets on routine aftercare including exercise to aid in recovery Websites/external resources should offered to patients who seek more information on DCIS Clinicians should encourage patients to seek emotional support if needed at any point post-DCIS diagnosis and treatment A web site should be developed that lists credible online resources and organizations from which patients can acquire information or support DCIS-specific resources (i.e., pamphlets, support groups) should be developed and offered to patients (women only) Patients should be offered the opportunity to be linked with a patient navigator to provide information and education about DCIS (women only) A card with contact information for patient navigators (and other supportive resources), if available, should be provided to patients to address further questions (women only) Survivorship programs that accept or are specific to DCIS should be developed and offered (women only) |
Future implications
PCC domain | Strategy reflecting women and clinician recommendations | Strategy reflecting women only additional considerations |
---|---|---|
Fostering patient–physician relationship | – | – |
Exchanging information | Develop a consensus guideline on the labels and language that clinicians should use when discussing DCIS Develop information material that patients can take home to further facilitate understanding of DCIS | Develop a communication aid including diagrams to help patients and clinicians discuss DCIS The communication aid could include the following items retained as recommendations Lay language that clinicians should use when the patient has no clinical background Prompts for clinicians to check patient understanding and address inaccurate perceptions Acknowledge stress that can invoke an emotional response |
Responding to patient emotions | – | The communication aid could encourage women to seek emotional support through counseling or support group The communication aid could include the following items retained as recommendations Acknowledge stress that can invoke an emotional response |
Managing uncertainty | The communication aid could include the following recommendations Information and/or statistics about the risk of recurrence, metastasis, progression to invasive disease, and prognosis Risk should be quantified and presented in absolute terms over a 10- or 20-year time frame Possibility of invasive disease that biopsy may not detect in the likelihood of sampling error | – |
Making decisions | Develop a guideline of DCIS treatment options Clinicians and patients should work together to discuss the merits of treatment options and jointly make a decision about the best option, but ultimately it is the patient’s decision to make (Note use of decision aid retained by women only) | Develop a decision aid If applicable to the patient, the decision aid should explain that even though DCIS is not cancer, treatment can achieve a bigger margin and prevent progression to invasive cancer The decision aid could include the following items retained as recommendations Mastectomy or prophylactic mastectomy may not be necessary Possible side effects that may occur after treatment including worsened body image, anxiety, or depression Prompts for clinicians to ask about lifestyle, and views about risks and outcomes to better understand patient preferences Prompts for clinicians to explain why a particular treatment option is best suited to the patient and tumor characteristics |
Enabling patient self-management | Develop information material on routine aftercare that could also include Contact details for credible web sites or organizations for women who seek more information on DCIS Encouragement to access counseling or support groups if needed at any point through survivorship Develop a follow-up plan “prescription” template Develop a web site that lists credible online resources and organizations from which women can acquire information or support | Develop DCIS-specific information material, patient navigation, supportive care, support groups, or survivorship programs |