Informational needs and the quality of life of patients in their first year after metastatic breast cancer diagnosis

Seah, Davinia; Lin, Nancy U.; Curley, C; Weiner, Eric P; Partridge, Ann H.

doi:10.12788/jcso.0077

Cited by 22 publications

(20 citation statements)

References 28 publications

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“…Broadly speaking, patient‐centered care is based on six principles: openly discussing the disease experience, developing a holistic understanding of the patient's biopsychosocial experience, finding common ground, creating a patient–oncologist alliance, discussing realistic options, and implementing measures that promote health . By understanding the unique needs of patients, oncologists can develop sensitivity to specific concerns and preferences of patients at distinct times during the course of their disease and proactively tailor communication to ascertain the quantity and quality of information that each patient finds useful . Keeping this in mind, a majority of patients with MBC prefer to discuss a “treatment roadmap” with their oncologist that includes comprehensive information about their disease and treatment management, followed by information in gradual, digestible portions thereafter .…”

Section: Discussionmentioning

confidence: 99%

Understanding the Needs of Patients with Metastatic Breast Cancer: Results of the Make Your Dialogue Count Survey

Brufsky

Ormerod

Dickson³

et al. 2016

Breast J

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With more patients with metastatic breast cancer (MBC) living longer, patient-centered communication and shared decision making between patient and oncologist are vital to improve care and quality of life in patients with MBC. The Make Your Dialogue Count survey explored emotional needs of patients at initial diagnosis of MBC and treatment change to increase awareness about gaps and facilitate communication between patients and oncologists. The survey was conducted (June-August 2014) online, by telephone, or on paper among US women with MBC and US-licensed medical oncologists. Patient data were unweighted. Oncologist data were weighted by geographic region and years in practice by sex to match actual proportions in the population. Statistically significant differences between groups were determined by standard t-test of column proportions and means at the 95% confidence level. Between initial diagnosis of MBC and treatment change, some patients' attitudes and feelings adapted as their disease advanced. Fewer patients reported fear of the unknown (58% versus 44%) and distress over believing something could have been done to prevent disease progression (26% versus 12%), but more patients reported hope of keeping the disease stable (46% versus 59%) and confidence in treatment options (29% versus 37%). During their treatment journey, more women with children ≤17 years old were distressed because they believed something could have been done to prevent disease progression versus women with children 18+ years old or no children. There were instances of misalignment between patient expectations and what oncologists actually discussed with patients. Our findings suggest that patients exhibit an ability to adapt during their disease. Having a shared understanding of concerns and needs of patients serves to strengthen the patient-oncologist alliance and creates a framework for oncologists to tailor disease management and coping strategies to improve quality of life for patients of all ages with MBC.

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Section: Discussionmentioning

confidence: 99%

Understanding the Needs of Patients with Metastatic Breast Cancer: Results of the Make Your Dialogue Count Survey

Brufsky

Ormerod

Dickson³

et al. 2016

Breast J

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“…Around the time of diagnosis, patients want information about the disease, side effect management, prevention of treatment-related side effects and prognosis; 15 21 25 at the time of treatment, treatment information (ie, monitoring treatment-related side effects and the risk-benefit profile of novel treatments) may be most relevant. 50 Long-term survivors' informational needs relate to their diagnosis, prognosis and treatment options, including understanding and managing treatment-related toxicities and effects such as psychosocial complications (eg, anxiety and depression and social complications).…”

Section: Introductionmentioning

confidence: 99%

Health information needs, source preferences and engagement behaviours of women with metastatic breast cancer across the care continuum: protocol for a scoping review

2017

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IntroductionThe health information needs, information source preferences and engagement behaviours of women with metastatic breast cancer (mBC) depend on personal characteristics such as education level, prior knowledge, clinical complications, comorbidities and where they are in the cancer journey. A thorough understanding of the information behaviours of women living with mBC is essential to the provision of optimal care. A preliminary literature review suggests that there is little research on this topic, but that there may be lessons from a slightly broader literature. This review will identify what is known and what is not known about the health information needs, acquisition and influences of women with mBC across the care continuum. Findings will help to identify research needs and specific areas where in-depth systematic reviews may be feasible, as well as inform evidence-based interventions to address the health information needs of female patients with mBC with different demographics and characteristics and across the mBC journey.Methods and analysisA scoping review will be performed using the guidelines of Arksey and O'Malley as updated by subsequent authors to systematically search scientific and grey literature for articles in English that discuss the health information needs, source preferences, engagement styles, and associated personal and medical attributes of women ≥18 years living with mBC at different stages of the disease course. A variety of databases (including Cumulative Index to Nursing and Allied Health Literature (CINAHL), PubMed, Excerpta Medica Database (EMBASE), Academic Search Premier, Cochrane Database of Systematic Reviews, PsycINFO, Health Source: Nursing/Academic Edition, and PQDT Open), oncology, patient advocacy and governmental websites will be searched from inception to present day. Research and non-research literature will be included; no study designs will be excluded. The six-stage Arksey and O'Malley scoping review methodological framework involves: (1) identifying the research question; (2) searching for relevant studies; (3) selecting studies; (4) charting the data; (5) collating, summarising and reporting the results; and (6) consulting with stakeholders to inform or validate study findings (optional). Data will be extracted and analysed using a thematic chart and descriptive content analysis.Ethics and disseminationBeing a secondary analysis, this research will not require ethics approval. Results will be disseminated through patient support organisations and websites and publications targeting healthcare professionals, advocates and patients.

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“…Patients with advanced cancer want information about their prognosis and what to expect from their disease and treatments. 21,22 A better sense of the likelihood of clinical benefit, survival probabilities, and prognostic factors could inform decisions on whether to embark on another line of palliative chemotherapy. 23 This retrospective study describes the pattern of palliative chemotherapy use according to tumor subtypes in patients treated for MBC between 2004 and 2007, and the duration of chemotherapy as defined by the time from the initiation of one chemotherapy regimen to the initiation of the next line of therapy as a result of disease progression or toxicity.…”

Section: Introductionmentioning

confidence: 99%

Use and Duration of Chemotherapy in Patients With Metastatic Breast Cancer According to Tumor Subtype and Line of Therapy

Seah¹,

Vaz-Luís²,

Macrae³

et al. 2014

J Natl Compr Canc Netw

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Benefits of chemotherapy vary in patients with metastatic breast cancer (MBC). This article describes the impact of tumor subtype and the line of therapy on the duration of chemotherapy. Clinicopathologic characteristics were extracted from the medical records of 199 consecutive patients with MBC at Dana-Farber Cancer Institute and analyzed according to subtype. Tumor subtypes were classified as hormone receptor (HR)-positive, triple-negative (TNBC), or HER2-amplified breast cancer. Duration of chemotherapy of each line was defined as the start of a chemotherapy regimen to the start of the next line of therapy as a result of progression or toxicity. There were 96, 44, and 59 patients with HR(+), TNBC, and HER2-amplified breast cancer, respectively. Median age at MBC diagnosis was 53 years. Median overall survivals were 32 and 54 months for HER2-amplified disease, 36 months for HR(+) breast cancer, and 17 months for TNBC (P<.0001). Patients with HER2-amplified disease received the most lines (median, 4; P=.032) and the longest duration of chemotherapy for every line. The median duration of chemotherapy in HER2-amplified patients remained at more than 4 months even out to sixth-line therapy. Patients with TNBC tended to receive the shortest duration of chemotherapy for every line of therapy. Tumor subtypes influence the number of lines, duration of chemotherapy, and survival. Among patients with HR(+) and HER2-amplified disease who undergo chemotherapy beyond the third line, substantial rates of prolonged therapies suggest clinical benefit. The role of advanced (greater than third) chemotherapy lines in improving survival of all patients with MBC warrants further study.

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Informational needs and the quality of life of patients in their first year after metastatic breast cancer diagnosis

Abstract: Patients with recently diagnosed MBC have high informational needs and decreased overall QOL. Additional research and supportive services meeting the informational and psychosocial needs of patients living with MBC are warranted.

Cited by 22 publications

References 28 publications

Understanding the Needs of Patients with Metastatic Breast Cancer: Results of the Make Your Dialogue Count Survey

Understanding the Needs of Patients with Metastatic Breast Cancer: Results of the Make Your Dialogue Count Survey

Health information needs, source preferences and engagement behaviours of women with metastatic breast cancer across the care continuum: protocol for a scoping review

Use and Duration of Chemotherapy in Patients With Metastatic Breast Cancer According to Tumor Subtype and Line of Therapy

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