Incongruence between women's survey- and interview-determined decision control preferences: A mixed methods study of decision-making in metastatic breast cancer

2018 ◽  
Vol 27 (8) ◽  
pp. 1950-1957
Author(s):  
Deborah Ejem ◽  
J. Nicholas Dionne-Odom ◽  
Yasemin Turkman ◽  
Sara J. Knight ◽  
Dan Willis ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Metastatic Breast Cancer ◽  
Mixed Methods ◽  
Metastatic Breast ◽  
Mixed Methods Study ◽  
Decision Control

scholarly journals Perspective of Patients with Metastatic Breast Cancer on Electronic Access to Scan Results: Mixed-Methods Study

10.2196/15723 ◽  
2020 ◽  
Vol 22 (2) ◽  
pp. e15723
Author(s):  
Christina Baun ◽  
Marianne Vogsen ◽  
Marie Konge Nielsen ◽  
Poul Flemming Høilund-Carlsen ◽  
Malene Grubbe Hildebrandt
Keyword(s):  
Breast Cancer ◽  
Computed Tomography ◽  
Metastatic Breast Cancer ◽  
Mixed Methods ◽  
Electronic Health Records ◽  
Metastatic Breast ◽  
Mixed Methods Study ◽  
Health Records ◽  
Electronic Access ◽  
Online Access

Background Patient-accessible electronic health records give patients quick and easy access to their health care data, enabling them to view their test results online prior to a clinic visit. Hospital reports can be difficult for patients to understand, however, and can lead to unnecessary anxiety. Objective We aimed to investigate the attitudes and experiences of Danish patients with metastatic breast cancer in using electronic health records to view their own scan results. Methods We conducted a prospective mixed-methods study in a sequential design at our institution during 2018. Participants were women with metastatic breast cancer who were having scans every 3 months (combined positron emission tomography and computed tomography or computed tomography alone) to monitor treatment effects. Participants first received an online questionnaire about their knowledge and use of online access to scan results. We then conducted semistructured interviews with 4 women who used the online access to view their scan results. Results A total of 46 patients received the questionnaire (median age 66, SD 11.8, range 34-84 years). Of these women, 38 (83%) completed the survey (median age 69, SD 10.7, range 42-84 years). Most patients (34/38) were aware of the opportunity to access their reports online, but only 40% (15/38) used this access to read their scan results. Barriers to online access were (1) anxiety over reading the scan results in the absence of clinician support, and (2) a preference to receive all disease information at their next hospital appointment. The patients who read their scan result found that facilitators were greater transparency and empowerment, and barriers were the consequences of reading bad news, the feeling of dilemma about the access, and the medical terminology. Conclusions Patients with metastatic breast cancer generally had a positive attitude toward electronic access to their scan results, and those who used this opportunity played a greater participatory role in their disease and its management. Others described the potential distress this opportunity caused. The study findings suggest that immediate online access to scan results should be available to patients, but it needs a support function alongside that ensures optimal patient care.

scholarly journals HORMONE-POSITIVE HER2-NEGATIVE METASTATIC BREAST CANCER: DECISION MAKING IN REAL CLINICAL PRACTICE

2020 ◽  
Vol 1 (2) ◽  
pp. 46-51
Author(s):  
L. Yu. Vladimirova ◽  
A. E. Storozhakova ◽  
T. A. Snezhko ◽  
L. K. Strakhova ◽  
N. A. Abramova ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Metastatic Breast Cancer ◽  
Clinical Practice ◽  
Metastatic Breast ◽  
Real Clinical Practice

The Significance of Patient-Reported Outcomes for Metastatic Breast Cancer Patients

2022 ◽  
Author(s):  
Larissa Elisabeth Hillebrand ◽  
Ulrike Söling ◽  
Norbert Marschner
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Metastatic Breast Cancer ◽  
Cancer Treatment ◽  
Patient Reported Outcomes ◽  
Metastatic Breast ◽  
Treatment Decision ◽  
Breast Cancer Patients ◽  
Treatment Decision Making ◽  
Patient Reported

Background: Breast cancer is still the most common malignancy in women worldwide. Once metastasized, breast cancer treatment primarily aims at reducing symptom burden, thereby trying to maintain and improve a patient´s quality of life (QoL), delaying disease progression, and prolonging survival. Curing the disease is not possible in the palliative setting. To better understand metastatic breast cancer patients, their symptoms and wishes, which are important for treatment-decision making and outcome, patient-reported outcomes (PROs) are of great importance, giving an impression of what really matters to and concerns a patient. Summary: Many advances have been made to implicate PROs in clinical trials, non-interventional studies, registries, and clinical routine care of metastatic breast cancer. For example, large phase III trials like PALOMA-3 (NCT01942135), MONALEESA-7 (NCT02278120), HER2CLIMB (NCT02614794), and KEYNOTE-119 (NCT02555657) trials implemented PROs in their trial design to assess the QoL of their trial patients. Also, non-interventional studies on metastatic breast cancer, like e.g., the NABUCCO study (IOM-02240), and prospective non-interventional, multicenter registries e.g., the tumor registry breast cancer (NCT01351584) or the breast cancer registry platform OPAL (NCT03417115), have implemented PROs to assess QoL during the anti-cancer treatment periods of the patients. Key Message: Using PROs in metastatic breast cancer can support shared treatment-decision making and management of symptoms, eventually leading to an improvement in QoL. Progressively, regulatory authorities take PROs into consideration for the approval of new drugs. Hence, the implication of PROs in cancer treatment, and especially in MBC, is of significant value.

scholarly journals Review of concepts in therapeutic decision-making in HER2-negative luminal metastatic breast cancer

2020 ◽  
Vol 22 (8) ◽  
pp. 1364-1377
Author(s):  
I. Alvarez-Lopez ◽  
S. Bezares ◽  
E. Dalmau Portulas ◽  
E. García-Martínez ◽  
J. Á. García-Sáenz ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Metastatic Breast Cancer ◽  
Metastatic Breast ◽  
Therapeutic Decision ◽  
Therapeutic Decision Making

Four Conversations: A randomized control trial of an online, shared decision making curriculum among the metastatic breast cancer community.

2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 47-47
Author(s):  
Sophia Kustas Smith ◽  
Kelly E. Westbrook ◽  
Kristin MacDermott ◽  
Matthew Roger LeBlanc ◽  
Sathya Amarasekara ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Metastatic Breast Cancer ◽  
Shared Decision Making ◽  
Self Efficacy ◽  
Metastatic Breast ◽  
T Test ◽  
Shared Decision ◽  
Breast Cancer Patients ◽  
The Impact

47 Background: Evidence shows that shared decision making is effective in improving the quality of end of life care, and that it rarely happens; new interventions are needed. Four Conversations is an evidence-based, online curriculum that facilitates shared decision making. This presentation will report the impact of Four Conversations on key outcomes. Methods: Individuals with metastatic breast cancer and caregivers are being recruited nationally. Consenting participants are randomized 1:1 to the treatment or wait-listed control arm. Treatment arm participants access content online; required activities included viewing interactive videos and completing workbook activities. Surveys are administered at Baseline, Week-4, and Week-8 via REDCap to assess for: decision making self-efficacy and conflict; and program satisfaction. An independent-samples t-test was conducted to compare change in decision making outcomes in treatment and usual care conditions at Week-4. A paired-samples t-test was used to access for changes in outcomes from Baseline to Week-8 among the treatment arm. Results: Participants (n = 138) were: mean age 53.2 (11.8) years; 96% female; 91% white; 72% married. There was significant improvement in decision making self-efficacy and reduction in conflict among the treatment arm at follow-up (p < .05). There was no significant change in decision making self-efficacy and conflict scores for treatment and wait-listed control conditions at the end of the intervention (p > .05). Among treatment arm participants who did not already have an advanced care directive, most (56%) completed one. Most participants (88%) would recommend Four Conversations to others and felt that the program better prepared them to make better decisions. Conclusions: While these results are preliminary (i.e., data collection continues through 9/2017), they suggest that Four Conversations may effect decision-making outcomes for metastatic breast cancer patients and caregivers. Additional research is recommended with larger and more diverse samples following completion of this study. Clinical trial information: NCT02944344.

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