Ann Partridge, MD, and Tal Sella, MD, on Web-Based Supportive Care
– Pilot project helped younger patients understand and manage symptoms
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Women diagnosed with breast cancer under the age of 40 have unique and often unmet needs. Moreover, those in this age group are more likely to develop aggressive disease and receive aggressive treatments, noted the authors of a study evaluating a web-based supportive care intervention.
"Although many of the symptoms reported by participants in our pilot study may be common among all women with breast cancer, younger women are particularly vulnerable to impairments in quality of life and social and psychologic well-being," Ann Partridge, MD, and Tal Sella, MD, both of Dana-Farber Cancer Institute in Boston, and colleagues wrote in the study online in .
"Mental and sexual health, in particular, is the complex subject that providers may lack the time and skill sets to attend to, leaving struggling young patients inadequately informed and supported," the team said.
A total of 30 women tried the interactive intervention -- called YES for Young, Empowered, and Strong -- for 12 weeks. It included surveys to be completed by participants, and provided information based on the responses. The most common concerns, reported by 80-90% of the participants, were sexual health, anxiety, stress, mindfulness, and fatigue. About half the participants said the intervention helped them to learn about, monitor, and manage their symptoms.
"YES is a feasible and acceptable digital intervention to support young women across the breast cancer care continuum," the researchers concluded. "The nearly universal triggering of sexual and mental health needs suggests suboptimal management in the clinical setting and the potential for self-management through a digital platform."
In the following interview, Partridge and Sella elaborated on the intervention and the unmet needs it addresses.
What exactly is the YES intervention?
Partridge and Sella: YES is a web-based intervention designed to provide additional support to young women with breast cancer in the self-monitoring and self-management of concerns and symptoms beyond that of a clinical setting. Research shows that young women with breast cancer have unique concerns and symptoms that are under-addressed in clinical practice -- specifically those related to fertility, sexual health, and menopausal concerns, and mental health.
As a digital intervention, YES may help to empower patients and mitigate these disparities. Through the portal, participants complete timed assessments asking about their symptoms and concerns and in response are offered tailored educational resources.
The YES platform piloted in this study included five main sections: "home page," "My Journal," "My Progress," "external resources," and "secure chat."
Through the home page participants can access their personalized informational resources as well as several preloaded resources, such as questions to consider with the care team. Survey responses, particularly symptoms, are graphed and updated over time and can be viewed.
Additional components allow for diary-like journaling, access to external resources (websites), and secure messaging with the study team. The latest version that we are now studying also includes access to an online chat with other young patients using YES.
What were some of the specific sexual and mental health needs of the women in your study?
Partridge and Sella: In YES, participants are asked about multiple symptoms, which are then clustered to trigger specific resources. Sexual health needs consisted of symptoms or concerns related to sexual interest, orgasmic dysfunction, vaginal dryness, and/or pain during intercourse.
The mental health needs surveyed consisted of anxiety, depression, and sad or unhappy feelings among others and triggered information resources spanning stress and mindfulness, fatigue, anxiety, and emotional health in survivorship, among others.
In addition to women newly diagnosed with breast cancer, the study included a group of breast cancer survivors. Were there needs or concerns unique to this group?
Partridge and Sella: Definitely. We found that breast cancer survivors engaged differently with YES. Even though they received a survey only every 4 weeks, they responded to fewer surveys than the newly diagnosed women. Additionally, they reported reading and using the offered resources less often.
In interviews, some survivors noted that symptom-related information may have been more useful if received earlier and when receiving more active treatment, such as chemotherapy. They also suggested that we add several additional and relevant informational resources, including fear of recurrence, financial resources, estate planning, and parenting, which we have done in the latest version we are now testing.
The study also included women diagnosed with early-stage and metastatic cancer. Were there any differences between these groups?
Partridge and Sella: Both women diagnosed with early breast cancer and those diagnosed with metastatic breast cancer seemed to engage with the resources provided. Patients with metastatic cancer, however, responded to fewer surveys than women with early breast cancer or survivors.
Patients with metastatic cancer represent a very heterogeneous group, with different disease biologies and treatments, and thus some may not need weekly surveying. On interviews however, both patients with early stage disease and those with metastatic cancers expressed that YES helped them normalize their symptoms, better understand and define what symptoms they were or weren't experiencing, and ultimately complemented the information communicated by their providers.
Tell us about the ongoing and planned studies to further evaluate this intervention.
Partridge and Sella: We are currently enrolling young women with newly diagnosed or metastatic breast cancer treated at Dana-Farber to YES. Additionally, we have recently opened a multicenter trial to assess the efficacy of YES in improving quality of life and symptoms among young breast cancer survivors. A particular focus of this study is to engage a diverse population of young women.
Read the study here and expert commentary about the clinical implications here.
The study was supported by the Breast Cancer Research Foundation.
Sella reported no conflicts of interest; Partridge reported receiving royalties from UpToDate.
Primary Source
JCO Clinical Cancer Informatics
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