Cancer patient perspectives on survivorship goals from the Smart Patients online community
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ORIGINAL ARTICLE
Cancer patient perspectives on survivorship goals from the Smart Patients online community Mekhala Hoskote 1 & Gem Le 1 & Roy Cherian 1 & Roni Zeiger 2 & Urmimala Sarkar 1 Received: 4 June 2020 / Accepted: 1 September 2020 # Springer-Verlag GmbH Germany, part of Springer Nature 2020
Abstract Background Cancer impacts individuals’ life goals. Recent cancer care guidelines recommend discussing life goals as part of patientprovider communication. The goal of this study was to understand patients’ attitudes toward goal sharing with their cancer care providers. Patients and methods Semi-structured questionnaires were conducted via email with cancer patients and survivors (n = 39) on an online social network called Smart Patients. Participants answered open-ended questions about their life goals. They then completed a survey regarding their attitudes toward goal sharing with healthcare providers. The study team used an integrated inductive-deductive qualitative analysis to identify conceptual themes. Results Participants listed goals related to improving physical activity, control, enjoyment/leisure, and inner strength while reducing pain, anxiety, fear of recurrence, and uncertainty. Most of these goals were life goals rather than goals specifically related to medical care. Across all goals, there was a focus on returning to normality. Our findings show that 87% of participants expect their cancer specialist to discuss their treatment preferences and goals regularly with them. However, participants were reluctant to share their goals with their providers. Respondents felt that their providers did not have an interest in their life goals or time to address them in addition to their medical treatment. Conclusion Even though cancer patient-provider communication guidelines advocate for discussions around life goals, participants in this study expressed reluctance to share life goals with providers. Further efforts to align expectations of patients and providers may facilitate adherence to cancer communication guidelines about life goals. Implications for cancer survivors Cancer survivors should be aware that discussing life goals is part of recommended communication with their cancer care teams. Keywords Cancer survivorship . Survivorship care plans . Patient education . Health communication
Introduction In 2016, 15.5 million Americans had a history of cancer [1], and in 2018, there were an estimated 1.7 million new cases of cancer [2]. A cancer diagnosis and treatment can significantly alter a patient’s lifestyle, quality of life, and subsequently their life goals [3]. Setting and pursuing life goals are crucial for patients’ psychological adjustment to chronic illness [4].
* Urmimala Sarkar [email protected] 1
Division of General Internal Medicine at Zuckerberg San Francisco General Hospital, Center for Vulnerable Populations, University of California San Francisco, 1001 Potrero Avenue, Box 1364, San Francisco, CA, USA
2
Smart Patients, Mountain View, CA, USA
Cancer treatment can be an inc
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