What Do Ovarian Cancer Patients Expect From Treatment? open access

open access (click on link then pdf)
  July 23, 2016
 Author Affiliations: PatientsLikeMe, Cambridge, Massachusetts; AstraZeneca, Mo¨lndal, Sweden

 Study Design
A Web-based survey was administered tomembers of PLM with
ovarian cancer between January 9, 2014, and March 17, 2014.
PatientsLikeMe uses a secure, internal survey software tool to administer
research surveys to patients. Using a series of open ended questions, the
objective of this survey was to understand patient experiences, hopes, and expectations from their ovarian cancer treatment.

Ovarian Cancer Experience Survey
The data presented are a subset of the Ovarian Cancer Experience
Questionnaire, a larger questionnaire about ovarian cancer patient
experiences. The survey was based on a study by McCarrier
and colleagues17 with patients with chronic lymphocytic leukemia.
The survey was adapted for use in ovarian cancer through
literature review and consultation with several clinical experts.
The original survey contained 74 items covering a range of topics
aimed at capturing the clinical background, treatment, impact
on quality of life, and hopes and expectations before and after
each treatment episode for patients with ovarian cancer......

 Patient Knowledge at Diagnosis
Two-thirds (n = 20) of participants reported knowing little to
nothing about ovarian cancer at diagnosis. Those with some
knowledge described knowing only that ovarian cancer has a
high likelihood of a fatal outcome. Along with a general lack of
information and a sense that ovarian cancer was deadly, participants
expressed a number of worries about their future, the most
frequent of which were about death (n = 10), general worry and
fear (n = 7), and impact on loved ones (n = 4).