How to know what to know: Information challenges for women in the diagnostic phase of breast cancer

Ormel, Ilja; Magalhaes, Mona; Josephson, Debbie; Tracey, Linda; Law, Susan

doi:10.1016/j.pec.2020.06.030

Cited by 9 publications

(16 citation statements)

References 26 publications

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“…This analysis informed the questions developed for the focus group discussions in this study. Details regarding the methods for the original qualitative research have been published elsewhere [ 22 ].…”

Section: Methodsmentioning

confidence: 99%

“…Similarly, Ziebland and Wyke [ 19 ] reported that experiential information can support people in making better health care choices, raising awareness of certain health issues, improving health literacy, comparing each other’s situation, and accessing more appropriate services. From our study on women’s experiences of breast cancer, we found that experiential information can complement women’s information needs about subjects that are not always communicated through factual and biomedical types of information [ 22 ]. It is argued that the inclusion of experiential health information will remain a key feature of eHealth strategies because of the appeal and memorability of stories and the need to make contact with peers [ 19 ].…”

Section: Introductionmentioning

confidence: 99%

“…One of the key findings from previous studies was that women missed important information during the diagnostic phase, especially while preparing for surgery. However, women also reported that they struggled to handle information at the start of their breast cancer journey [ 22 ]. Women with suspicious lumps or other symptoms of potential breast cancer may often be seen and treated by a surgeon before they come under the care of a specialized breast cancer team (providing multidisciplinary care and support throughout the journey [ 8 ]).…”

Section: Introductionmentioning

confidence: 99%

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Using a Mobile App–Based Video Recommender System of Patient Narratives to Prepare Women for Breast Cancer Surgery: Development and Usability Study Informed by Qualitative Data

Ormel¹,

Onu²,

Magalhaes³

et al. 2021

JMIR Form Res

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Background Women diagnosed with breast cancer are often bombarded with information. Such information overload can lead to misunderstandings and hamper women’s capacity for making informed decisions about their care. For women with breast cancer, this uncertainty is particularly severe in the period before surgery. Personalized narratives about others’ experiences can help patients better understand the disease course, the quality and type of care to be expected, the clinical decision-making processes, and the strategies for coping. Existing resources and eHealth apps rarely include experiential information, and no tools exist that tailor information for individual preferences and needs—offering the right information at the right time and in the right format. Combining high-quality experiential evidence with novel technical approaches may contribute to patient-centered solutions in this area. Objective This study aims to design and seek preliminary feedback on a mobile app that will improve information access about surgery for patients with breast cancer, by drawing on a qualitative collection of personal narratives from a diverse sample of Canadian women and using video and audio recordings or audio recordings from the Canadian Health Experiences Research Network. Methods In a previous study, we conducted in-depth interviews with 35 Canadian women and used video and audio recordings or audio recordings to collect stories about the lived experiences of breast cancer. The participants highlighted the need for more specific information between diagnosis and surgery that was relevant to their personal situations and preferences. They also wanted to learn from other women’s experiences. We worked with patients, clinicians, and informatics experts to develop a mobile app that provides access to tailored experiential information relevant to women’s personal situations and preferences. We completed focus groups and qualitative interviews, conducted a further analysis of the original qualitative data, designed novel software using artificial intelligence, and sought preliminary feedback from users on a new app via focus groups and a survey. Results The secondary analysis of the breast cancer narratives revealed key themes and their interconnections relevant to the experience of surgery, including preparation, treatment decisions, aftercare, reconstruction, prostheses, lumpectomy and mastectomy, and complications. These themes informed the development of the structure and content of the app. We developed a recommender system within the app by using content matching (user and speaker profiles and user interests and video content) and collaborative filtering to identify clips marked as relevant by the user and by similar users. A 2-minute animated introductory video for users was developed. Pilot testing revealed generally positive responses regarding the content and value of this type of e-tool. Conclusions Developing reliable, evidence-based tools and apps that are based on diverse collections of people’s experiences of illness offers a novel approach to help manage the plethora of information that women face after a diagnosis of breast cancer.

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Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Using a Mobile App–Based Video Recommender System of Patient Narratives to Prepare Women for Breast Cancer Surgery: Development and Usability Study Informed by Qualitative Data

Ormel¹,

Onu²,

Magalhaes³

et al. 2021

JMIR Form Res

Self Cite

View full text Add to dashboard Cite

show abstract

“…According to Blodt et al, information regarding illness experience is closely associated with gaining control in a seemingly uncontrollable situation to avoid the disease taking over. However, there is always a fine line between information seeking and the risk of becoming overwhelmed by information (Blodt et al, 2018;Ormel et al, 2020 In relation to Support, the patients found the physical needs best supported by the healthcare professionals, which may also be the most concrete problems to describe and handle.…”

Section: Discussionmentioning

confidence: 99%

“…Adjuvant treatment for early‐stage breast cancer is increasingly complicated, comprising of chemotherapy (taxanes and anthracyclines), endocrine therapy, antibodies and radiation. Patients may struggle to perceive and understand large amounts of information, about prognosis, treatment and adverse effects due to information overload (Ormel et al., 2020). However, individual information for new patients is time‐consuming and depends on the person giving the information.…”

Section: Introductionmentioning

confidence: 99%

Nurse‐led group information for patients with breast cancer: Equal to individual information? A comparative study

et al. 2020

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Aim To investigate outpatients with breast cancer perception of information before and after changed informational practice. Design The design was a comparative study. Method Information about breast cancer treatment and chemotherapy toxicity changed from individual to nurse‐led group information. Women with early‐stage breast cancer were eligible. To evaluate individual versus group information, the patients completed a questionnaire at their third cycle of chemotherapy, including Knowledge of treatment, Support from healthcare professionals or peers and general self‐efficacy Ability to act in everyday life. The study is registered in OSF https://osf.io/bh7wg . Results In total, 90 participants in two groups were included: (a) individual information ( N = 44) and (b) group information ( N = 46). Groups were comparable in age and educational level. Both groups found the information satisfactory, with no significant differences regarding perceived knowledge or support. Five of ten questions in self‐efficacy showed significantly better outcomes in patients receiving group information but with no difference in overall self‐efficacy. Group information was non‐inferior compared with individual information. Patients were satisfied in both groups.

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Patients' perceived challenges, competencies, and supportive care needs during acute clinical treatment of breast or gynecological cancer

et al. 2023

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Objective: This study aimed to examine challenges, competencies, and supportive care needs (SCN) of women with breast or gynecological cancer during acute cancer treatment and associations to other health-related variables. Methods:We surveyed 120 patients with breast or gynecological cancer at the end of acute cancer treatment, either directly after surgery or during adjuvant chemotherapy. We assessed challenges, subjective competencies, and SCN using a self-developed measure comprising 25 items referring to coping tasks assigned to six domains. In addition, patients' competencies and health literacy (HL) were assessed. Results:Most patients felt at least moderately challenged by coping tasks concerning psychological distress (e.g., dealing with fears and insecurities, 70.2%; coping with cancer diagnosis, 69.6%) and physical complaints (e.g., dealing with a reduced physical capacity, 56.6%). About 42.5%-71.4% of patients who evaluated coping tasks as highly challenging felt competent to deal with these challenges themselves. Less than half of patients reported SCN, mainly regarding psychological concerns. The extent of challenging coping tasks, patients' perceived ability to overcome challenges themselves, and SCN showed associations to patient competencies and HL.Conclusions: SCN regarding psychological concerns and health behavior should be addressed in acute cancer care and rehabilitation programs. In addition, promoting HL might be essential in strengthening patients' subjective competencies related to various coping tasks.

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How to know what to know: Information challenges for women in the diagnostic phase of breast cancer

Cited by 9 publications

References 26 publications

Using a Mobile App–Based Video Recommender System of Patient Narratives to Prepare Women for Breast Cancer Surgery: Development and Usability Study Informed by Qualitative Data

Using a Mobile App–Based Video Recommender System of Patient Narratives to Prepare Women for Breast Cancer Surgery: Development and Usability Study Informed by Qualitative Data

Nurse‐led group information for patients with breast cancer: Equal to individual information? A comparative study

Patients' perceived challenges, competencies, and supportive care needs during acute clinical treatment of breast or gynecological cancer

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