Information needs and research priorities in long‐term survivorship of breast cancer: Patients and health professionals' perspectives

León‐Salas, Beatriz; Álvarez‐Pérez, Yolanda; Ramos‐García, Vanesa; Trujillo‐Martín, Ma. del Mar; Medina, Ana María de Pascual y; Esteva, María; Brito‐García, Noé; González‐Hernández, Nerea; Bohn-Sarmiento, Uriel; Biurrun‐Martínez, M. Concepción; Serrano‐Aguilar, Pedro

doi:10.1111/ecc.13730

Cited by 3 publications

(1 citation statement)

References 63 publications

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“…Women in this study pointed out information needs concerning different stages of the cancer, from diagnosis to long-term follow-up, as shown in previous studies [37,38]. Increasingly, these patients want to be involved in the decisions related to their health, and some studies have focused on involving the patient experience to improve the healthcare they receive [31,39].…”

Section: Discussionmentioning

confidence: 53%

Digital Health Literacy and Person-Centred Care: Co-Creation of a Massive Open Online Course for Women with Breast Cancer

Álvarez‐Pérez

Duarte-Díaz

Toledo-Chávarri

et al. 2023

IJERPH

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The diagnosis of breast cancer (BC) can make the affected person vulnerable to suffering the possible consequences of the use of low-quality health information. Massive open online courses (MOOCs) may be a useful and efficient resource to improve digital health literacy and person-centred care in this population. The aim of this study is to co-create a MOOC for women with BC, using a modified design approach based on patients’ experience. Co-creation was divided into three sequential phases: exploratory, development and evaluation. Seventeen women in any stage of BC and two healthcare professionals participated. In the exploratory phase, a patient journey map was carried out and empowerment needs related to emotional management strategies and self-care guidelines were identified, as well as information needs related to understanding medical terminology. In the development phase, participants designed the structure and contents of the MOOC through a Moodle platform. A MOOC with five units was developed. In the evaluation phase, participants strongly agreed that their participation was useful for the MOOC’s development and participating in the co-creation process made the content more relevant to them (experience in the co-creation); most of the participants positively evaluated the content or interface of the MOOC (acceptability pilot). Educational interventions designed by women with BC is a viable strategy to generate higher-quality, useful resources for this population.

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Section: Discussionmentioning

confidence: 53%

Digital Health Literacy and Person-Centred Care: Co-Creation of a Massive Open Online Course for Women with Breast Cancer

Álvarez‐Pérez

Duarte-Díaz

Toledo-Chávarri

et al. 2023

IJERPH

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Needs of breast cancer survivors: a systematic review of quantitative data

Paltrinieri,

Cavuto,

Contri

et al. 2024

Critical Reviews in Oncology/Hematology

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Prevalence of cancer survivors in the United States

Tonorezos,

Devasia,

Mariotto

et al. 2024

JNCI: Journal of the National Cancer Institute

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Background With aging of the population and improvements in diagnosis, treatment, and supportive care, the number of cancer survivors in the United States has increased; updated prevalence estimates are needed. Methods Cancer prevalence on January 1, 2022, was estimated using the Prevalence Incidence Approach Model, utilizing incidence, survival, and mortality. Prevalence by age decade, sex, and time from diagnosis was calculated. The percentage of cancer survivors in the projected US population by age and sex was calculated as the ratio of the sex-specific projected prevalence to the sex-specific projected US population. Results There were an estimated 18.1 million US cancer survivors as of January 1, 2022. From 2022 to 2030, the number of US cancer survivors is projected to increase to 21.6 million; by 2040, the number is projected to be 26 million. Long-term survivors are highly prevalent; in 2022, 70% of cancer survivors had lived 5 years or more after diagnosis, and 11% of cancer survivors had lived 25 years or more after diagnosis. Among all US females aged 40-54 years, 3.6% were cancer survivors; among females aged 65-74 years, 14.5% were cancer survivors; among females aged 85 years and older, 36.4% were cancer survivors. Among all US males aged 40-54 years, 2.1% were cancer survivors; among males aged 65-74 years, 16% were cancer survivors; and among those aged 85 years and older, 48.3% were cancer survivors. Conclusions Cancer survivors are growing in number. In the United States, most cancer survivors are long-term and very long-term survivors, representing a substantial proportion of the US population.

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Information needs and research priorities in long‐term survivorship of breast cancer: Patients and health professionals' perspectives

Cited by 3 publications

References 63 publications

Digital Health Literacy and Person-Centred Care: Co-Creation of a Massive Open Online Course for Women with Breast Cancer

Digital Health Literacy and Person-Centred Care: Co-Creation of a Massive Open Online Course for Women with Breast Cancer

Needs of breast cancer survivors: a systematic review of quantitative data

Prevalence of cancer survivors in the United States

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