Engaging care partners in breast cancer care and communication.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. 11614-11614
Author(s):  
Jennifer Aufill ◽  
Jennifer L. Wolff ◽  
Diane Echavarria ◽  
JaAlah-Ai Heughan ◽  
Kimberley T. Lee ◽  
...  

11614 Background: Family is often overlooked in cancer care. Little is known about the patient preferences for involving family in communication, whether preferences may be elicited and supported at the point of care, and impact on care quality. Methods: We conducted a two-group pilot randomized controlled trial (NCT03283553) of patients on active treatment for breast cancer and the “care partner” who accompanies them to routine visits (n = 132 dyads). Intervention dyads (n = 69) completed a self-administered checklist to clarify the care partner role, establish a shared visit agenda, and facilitate access to the electronic health record (MyChart) patient portal. Control dyads (n = 63) received usual care. Intervention acceptability and short-term effects were assessed from post-visit surveys and MyChart utilization at 6 weeks. Results: At baseline, most patients (89.4%) but few care partners (1.5%) were registered for MyChart. Most patients (79.4%) wanted their care partner to have access to their records and 39.4% of care partners reported accessing it in the past year using the patient’s account login/password. In completing the checklist, intervention patients and care partners identified an active communication role for the care partner and similar issues for the visit agenda: topics most frequently selected were treatment goals/expectations (75.4% & 66.7%, respectively), symptoms/side effects (73.9% & 62.3%) and chances of cancer recurrence/spread (49.3% & 44.9%). More than 90% of intervention participants reported that completing the checklist was easy, useful, and recommended it to others. At 6 weeks, intervention (vs control) care partners were more likely to be registered for MyChart (75.4 % vs 1.6%; p < 0.001), to have logged in (43.5% vs 0%; p < 0.001) and viewed clinical visit notes (30.4% vs 0%; p < 0.001), but no more likely to have exchanged direct messages with the clinical team (1.5% vs 0%; p = 0.175). No difference in patient MyChart registration, use, or messaging was found at 6 weeks, but intervention patients more often viewed clinical visit notes (50.7% vs 9.5%; p < 0.001). Conclusions: A self-administered patient-family communication intervention affected online practices of patients and cancer care partners. Follow-up continues. Clinical trial information: NCT03283553.

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Jennifer L. Wolff ◽  
Jennifer Aufill ◽  
Diane Echavarria ◽  
Amanda L. Blackford ◽  
Roisin M. Connolly ◽  
...  

AbstractWe examined the effects of a communication intervention to engage family care partners on patient portal (MyChart) use, illness understanding, satisfaction with cancer care, and symptoms of anxiety in a single-blind randomized trial of patients in treatment for breast cancer. Patient-family dyads were recruited and randomly assigned a self-administered checklist to clarify the care partner role, establish a shared visit agenda, and facilitate MyChart access (n = 63) or usual care (n = 55). Interviews administered at baseline, 3, 9 (primary endpoint), and 12 months assessed anxiety (GAD-2), mean FAMCARE satisfaction, and complete illness understanding (4 of 4 items correct). Time-stamped electronic interactions measured MyChart use. By 9 months, more intervention than control care partners registered for MyChart (77.8 % vs 1.8%; p < 0.001) and logged into the patient’s account (61.2% vs 0% of those registered; p < 0.001), but few sent messages to clinicians (6.1% vs 0%; p = 0.247). More intervention than control patients viewed clinical notes (60.3% vs 32.7%; p = 0.003). No pre-post group differences in patient or care partner symptoms of anxiety, satisfaction, or complete illness understanding were found. Intervention patients whose care partners logged into MyChart were more likely to have complete illness understanding at 9 months (changed 70.0% to 80.0% vs 69.7% to 54.6%; p = 0.03); symptoms of anxiety were numerically lower (16.7% to 6.7% vs 15.2% to 15.2%; p = 0.24) and satisfaction numerically higher (15.8–16.2 vs 18.0–17.4; p = 0.25). A brief, scalable communication intervention led to greater care partner MyChart use and increased illness understanding among patients with more engaged care partners (NCT03283553).


2020 ◽  
pp. 1446-1454
Author(s):  
Lydia E. Pace ◽  
Lauren E. Schleimer ◽  
Cyprien Shyirambere ◽  
André Ilbawi ◽  
Jean Marie Vianney Dusengimana ◽  
...  

PURPOSE The burden of cancer is growing in low- and middle-income countries (LMICs), including sub-Saharan Africa. Ensuring the delivery of high-quality cancer care in such regions is a pressing concern. There is a need for strategies to identify meaningful and relevant quality measures that are applicable to and usable for quality measurement and improvement in resource-constrained settings. METHODS To identify quality measures for breast cancer care at Butaro Cancer Center of Excellence (BCCOE) in Rwanda, we used a modified Delphi process engaging two panels of experts, one with expertise in breast cancer evidence and measures used in high-income countries and one with expertise in cancer care delivery in Rwanda. RESULTS Our systematic review of the literature yielded no publications describing breast cancer quality measures developed in a low-income country, but it did provide 40 quality measures, which we adapted for relevance to our setting. After two surveys, one conference call, and one in-person meeting, 17 measures were identified as relevant to pathology, staging and treatment planning, surgery, chemotherapy, endocrine therapy, palliative care, and retention in care. Successes of the process included participation by a diverse set of global experts and engagement of the BCCOE community in quality measurement and improvement. Anticipated challenges include the need to continually refine these measures as resources, protocols, and measurement capacity rapidly evolve in Rwanda. CONCLUSION A modified Delphi process engaging both global and local expertise was a promising strategy to identify quality measures for breast cancer in Rwanda. The process and resulting measures may also be relevant for other LMIC cancer facilities. Next steps include validation of these measures in a retrospective cohort of patients with breast cancer.


2009 ◽  
Vol 27 (15_suppl) ◽  
pp. 6537-6537
Author(s):  
K. P. Joseph ◽  
R. Franco ◽  
K. Fei ◽  
N. Bickell

6537 Background: As insurers consider paying for performance and quality measures grow in importance, factors that affect patients' perceived quality of cancer care matter. Concordance by race in physician-patient relationships has been associated with patient satisfaction and use of health care, however how that is mediated is unclear. Methods: 210 of 300 eligible women stage I or II breast cancer at 1 of 8 participating NYC hospitals responded to our survey (70% response rate): 20% were African-American (AA), 40% were white, and 30% were Hispanic and 9% were other races. Trust is based on a validated scale and calibrated to a 100 point scale (Cronbach α = 0.76). Bivariate analyses and logistic models were used to identify factors associated with patient ratings of quality of care. Results: Only 55% of women rated the quality of their cancer care as excellent. AA women breast cancer patients were less likely to rate their care as excellent (p=0.004). Compared to women who didn't rate their care as excellent, those who rated it excellent had greater trust in their physician (p < 0.0001) and indicated that were treated well by their physicians' office staff (p = 0.01). Of note, AA patients had lower levels of trust (p = 0.004). Women who were of the same race as their physician did not perceive better quality of care as compared to those who were not racially concordant (p = 0.18); nor did they have higher trust in their physician (p = 0.59). Multivariate models evaluating the role of patient race, education, income, knowing which physician to talk to, how well the staff treated the patient, and racial concordance with physician, found that trust in physician was significantly associated with patient perception of excellent quality care (aRR = 1.38; 95%CI: 1.03–1.65) and being AA was associated with worse perceived quality (aRR = 0.47; 95%CI: 0.21–0.88) (model c = 0.79; p < 0.0001). Conclusions: Racial concordance between physicians and patients does not directly affect patients' perceived quality of care. However, women's trust in their physician and their perceived treatment by office staff are associated with excellent cancer care quality ratings. Efforts should be made to increase effective intercultural communication particularly among AA women in order to improve ratings of cancer care quality. No significant financial relationships to disclose.


2016 ◽  
Vol 34 (7_suppl) ◽  
pp. 16-16
Author(s):  
Oluwadamilola M. Fayanju ◽  
Tinisha L. Mayo ◽  
Tracy E. Spinks ◽  
Seohyun Lee ◽  
Carlos Hernando Barcenas ◽  
...  

16 Background: Value in healthcare (patient-centered outcomes achieved per dollar spent) unifies performance improvement goals with health outcomes of importance to patients. We describe the process through which value-based measures for breast cancer patients and dynamic capture of these metrics via our new electronic health record (EHR) were developed at our institution. Methods: A review of the breast cancer literature was conducted on treatment options as well as expected outcomes and potential treatment complications. Patient perspective was obtained via focus groups. Multidisciplinary teams met to inform a 3-phase process of (1) concept development, (2) measure specification, and (3) implementation via EHR integration, planned for spring 2016. Results: Outcomes were divided into 3 previously defined tiers (NEJM 2010; 363:2477-2481) that reflect the entire cycle of care (Table).Within these tiers, 22 patient-centered outcomes were defined with inclusion/exclusion criteria, specifications for reporting, and sources for data including the EHR and validated patient-reported outcome questionnaires (e.g., FACT-B+4) administered via our patient portal. Conclusions: A value-based approach to cancer care with transparently reported patient outcomes not only creates opportunity for performance improvement but also enables benchmarking within and across providers, healthcare systems, and even countries. Our value-based framework for breast cancer is the first of its kind in the United States, with a similar model being pursued internationally as well. [Table: see text]


2007 ◽  
Vol 0 (0) ◽  
pp. 070726095645001-??? ◽  
Author(s):  
K.-P. CHUNG ◽  
M.-S. LAI ◽  
S.H. CHENG ◽  
S.-T. TANG ◽  
C.C. HUANG ◽  
...  

2017 ◽  
Vol 35 (8_suppl) ◽  
pp. 158-158
Author(s):  
Lauren P. Wallner ◽  
Nancy K. Janz ◽  
Yun Li ◽  
Christopher Ryan Friese ◽  
Kevin C. Ward ◽  
...  

158 Background: Prior studies have shown that worry about recurrence is a common problem during cancer treatment and survivorship and may be associated with symptom response and surveillance after primary treatment. However, whether worry about recurrence influences patient preferences for which provider to see for their continuing care remains unknown. Methods: A random sample of patients newly diagnosed with breast cancer in 2014-15 as reported to the Georgia and Los Angeles SEER registries were surveyed approximately 6 months after diagnosis (N = 2,502, 70% response rate). Frequency of worry about recurrence was defined by asking women to indicate on a 5-pt scale how often they worried about their cancer coming back in the past month (not at all-always) and was then dichotomized as frequent worry (sometimes/often/almost always) vs. less worry (almost never/rarely). Patient preferences for which provider manages certain aspects of care after treatment were ascertained for: follow-up mammograms, screening for other cancers, general preventive care, and treatment of comorbidities. Response categories included primary care clinician (PCP), cancer doctors, either or both. The associations between patient-reported worry about recurrence with preferences for provider roles were assessed using multinomial logistic regression. Results: In this sample, 37% of women reported worrying frequently about recurrence. Controlling for patient and clinical factors, women who reported more frequent worry (vs. less worry) were more likely to prefer to see both clinicians (vs. PCP only) for mammograms (OR: 2.3, 95%CI: 1.5, 3.6), screening for other cancers (OR: 2.3, 95%CI: 1.5, 3.5), general preventive care (OR: 1.6, 95%CI: 1.1, 2.3) and comorbidity care (OR: 1.5, 95%CI: 1.03, 2.2). Conclusions: Frequent worry about recurrence was common in this sample of women with favorable prognosis breast cancer. More frequent worry about breast cancer recurrence was associated with stronger preferences for seeing both PCPs and oncologists for continuing care after treatment. Assessing and managing worry about recurrence early in survivorship may improve collaborative cancer care and reduce duplicated services after treatment.


2016 ◽  
Vol 50 ◽  
pp. 150-156 ◽  
Author(s):  
Liliana E. Pezzin ◽  
Purushottam Laud ◽  
Joan Neuner ◽  
Tina W.F. Yen ◽  
Ann B. Nattinger

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