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

Abstract

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.

Peer support opportunities across the cancer care continuum: a systematic scoping review of recent peer-reviewed literature

“…In line with other reviews of this type [38,39], our key steps for completing this review included: 1) identifying our research questions, 2) determining the search strategy, 3) pilot testing and refining our search strategy, 4) using eligibility criteria to select studies through title, abstract and full text review, 5) extracting data from selected articles to answer the research questions, and 6) summarizing the contributions and gaps based on the extracted data and recent literature. We created a written protocol to guide steps for completing the review.…”

Health Information Seeking Behavior of Breast Cancer Patients: A Qualitative Study

“…(4) Current health policies advocate that active involvement of patients in their health care is one of the most important components of care quality. (8)(9)(10) Active participation of women with breast cancer in treatment decision -making is very important due to the high incidence rate of the disease worldwide and the fact that breast cancer patients typically have different treatment options to choose. (8) Participation of breast cancer patients in their treatment process has several positive outcomes, including better quality of care, better quality of life and higher satisfaction from medical care received.…”

“…(8)(9)(10) Active participation of women with breast cancer in treatment decision -making is very important due to the high incidence rate of the disease worldwide and the fact that breast cancer patients typically have different treatment options to choose. (8) Participation of breast cancer patients in their treatment process has several positive outcomes, including better quality of care, better quality of life and higher satisfaction from medical care received. (8)(9)(10) The effective participation of patients in medical decision-making requires that they have sufficient information about the disease and its different aspects.…”

“…(8) Participation of breast cancer patients in their treatment process has several positive outcomes, including better quality of care, better quality of life and higher satisfaction from medical care received. (8)(9)(10) The effective participation of patients in medical decision-making requires that they have sufficient information about the disease and its different aspects. However, the results of studies show that women with breast cancer have a high level of unmet information needs about their health and also a high degree of dissatisfaction with information provided by the care providers.…”

“…A) Contextual factors including healthcare structure, delivery of care, information environment factors and cross-cultural communication. (6) B) Individual factors including demographic factors such as age (4,6) , socioeconomic factors, health history, genetics, family medical history, culture, language, attitudes, intentions and behaviors, current health status and health literacy (6) , education (6,45) , race (8) , having private insurance coverage and living with a partner. (45) Also, women with higher self-efficacy have more active role in seeking information.…”