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What Do Ovarian Cancer Patients Expect From Treatment?: Perspectives From an Online Patient Community.

作者信息

Simacek Kristina, Raja Priya, Chiauzzi Emil, Eek Daniel, Halling Katarina

机构信息

Author Affiliations: PatientsLikeMe, Cambridge, Massachusetts (Mss Simacek and Raja and Dr Chiauzzi); AstraZeneca, Mölndal, Sweden (Dr Eek and Ms Halling).

出版信息

Cancer Nurs. 2017 Sep/Oct;40(5):E17-E27. doi: 10.1097/NCC.0000000000000415.

Abstract

BACKGROUND

Advances in ovarian cancer treatment have improved outcomes. However, the gap between patients' hopes and expectations and their actual outcomes remains an understudied aspect of treatment decision making. This gap has been noted to be a predictor of poorer health-related quality of life. Incorporating patient hopes and expectations for treatment into clinical care may improve patient experiences.

OBJECTIVES

The aim of this study is to describe the hopes and expectations of ovarian cancer patients at diagnosis and throughout treatment transitions.

METHODS

This study sampled from an online community of patients with ovarian cancer. Thirty members completed an online qualitative survey about their diagnostic and treatment journey, including hopes and expectations around treatment.

RESULTS

Initially, ovarian cancer patients hoped for a complete cure or removal of cancer. As they progressed through treatment, hopes and expectations centered on issues related to living with ovarian cancer. A subset of patients emphasized a lack of information about treatment side effects.

CONCLUSIONS

The shift in expectations from survival to living with ovarian cancer may demonstrate an enhanced understanding of ovarian cancer prognosis as patients learn more about their condition. Patients underscored that a more involved discussion of side effect profiles with clinicians would enhance their treatment decision making and expectation setting process.

IMPLICATIONS FOR PRACTICE

Expectation setting may be improved by contextualizing treatment in terms of the transitions ovarian cancer patients experience. Providing relevant information that aligns with patient needs, desires, and concerns at critical transitions may improve clinical care and decision making.

摘要

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