A scoping review of consumer needs for cancer information

Jo, Heui Sug; Park, Keeho; Jung, Su Mi

doi:10.1016/j.pec.2019.02.004

Cited by 38 publications

(26 citation statements)

References 109 publications

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“…The last few decades have been marked by the rapid expansion of web-based health information [ 1 ], and breast cancer has been noted as the most searched for health topic on the web [ 2 ]. This has not only helped to promote the availability of relevant breast cancer information but also exacerbated challenges related to information overload [ 3 ].…”

Section: Introductionmentioning

confidence: 99%

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: Introductionmentioning

confidence: 99%

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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show abstract

“…In contrast, non-patients had the highest need for general cancer information, prevention, and cancer examination. Caregivers sought information about treatment, psychosocial support, and prevention (Jo et al, 2019). Also, they wanted not only medical but also psychosocial support information.…”

Section: Discussionmentioning

confidence: 99%

Understanding Facilitators and Barriers of Online Cancer Information Utilization among Cancer Survivors and their Families: Focus on the Theory of Planned Behavior

Shin

Kim

2020

Asian Pac J Cancer Prev

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“…Qualitative content analysis can be defined as 'a research method for the subjective interpretation of the content of text data through systematic classification process of coding and identifying themes or patterns' [20]. In this study, we analyzed the statements regarding esophageal cancer by classifying them into eight categories concerning unmet needs and patients' preferences: ( 1 8) other [2,21]. If a statement included two or more meanings or contents, these were counted separately.…”

Section: Views and Preferences Regarding Esophageal Cancer And Qualitative Content Analysismentioning

confidence: 99%

Creation and provision of a question and answer resource for esophageal cancer based on medical professionals’ reports of patients’ and families’ views and preferences

Toh

Inoue²,

Hayakawa³

et al. 2021

Esophagus

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Background In the rapidly-progressing healthcare environment, it is essential to improve treatment quality through continuous clarification of the needs and concerns of esophageal cancer patients and their families. Effective collaboration between information providers and academic associations could help make such clarified information available. Methods We analyzed esophageal cancer patients’ views and preferences (PVPs) using data that were previously obtained from medical staff in Japan. Based on these PVPs, we created a question and answer (Q&A) resource through collaboration with the Cancer Information Service in Japan (CISJ) and the Japan Esophageal Society (JES). Results Regarding esophageal cancer, “diet and eating behavior” was the most frequent PVP mentioned by patients and their families, followed by “treatment-related symptoms and adverse effects” and “daily life, recuperation, and survivorship.” These PVPs were noted by a wide variety of medical specialties. By analyzing the PVPs, the CISJ developed 11 proposed questions and sent them to the JES, which then created answers based on evidence and clinical–practice-associated consensus. The resultant Q&A resource was uploaded to the CISJ website with mutual linkage to the JES website. Conclusions This study showed the usefulness of collecting esophageal–cancer-related PVPs from medical staff and fostering successful collaboration between a cancer-information provider and an academic association. This arrangement may represent a model case for developing a sustainable system that can satisfactorily respond to PVPs regarding other cancers and/or issues.

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A scoping review of consumer needs for cancer information

Cited by 38 publications

References 109 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

Understanding Facilitators and Barriers of Online Cancer Information Utilization among Cancer Survivors and their Families: Focus on the Theory of Planned Behavior

Creation and provision of a question and answer resource for esophageal cancer based on medical professionals’ reports of patients’ and families’ views and preferences

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