Abstract
Women with advanced ovarian cancer are faced with many care management decisions over the course of their illness. As the disease progresses, care management becomes more difficult and stressful, perhaps most so when primary treatments fail, the cancer reaches an advanced stage, and the care plan must be reconsidered. Care management is particularly challenging during periods of transition between phases of care, such as between life-prolonging, disease-specific therapy, and comfort care. These periods of transition may be filled with uncertainty for patients. Patients may worry whether or not the timing of the switch is appropriate, what the switch will entail, and how they and their family members will adjust to the change. Further, many women are uninformed about their care options, and are unable to communicate well with their clinicians about them. This increases women's anxiety and anguish, compromises continuity of care, and leaves women at risk for uncontrolled pain and symptoms as well as absence of psychosocial and spiritual support. Given this situation, it is unclear how patients manage their care, especially during intense times of transition between types of care. A complicating factor is that it is difficult to define when a care transition takes place. Often there is no sharp transition between types of care.
Therefore, the aims of this qualitative interview study are to: 1) describe how women with advanced ovarian cancer self-manage their care over the course of illness and during key periods of transition; 2) investigate what women do and do not know about non-curative treatment options, from where they get their information, how these interactions occur, how they choose among options to create a care plan, and how they adapt to the disease process and the resulting transitions in care; and 3) determine how women with advanced ovarian cancer define care transitions.
Since management of care transitions is largely unexamined, qualitative methods will be used. This cross-sectional study will consist of in-depth, individual, semi-structured interviews with women who have been diagnosed with advanced ovarian cancer. Respondents will be identified purposively through referrals from Yale New-Haven Hospital and Yale Cancer Center. The expected sample size for this pilot study is 15-20 women. An original interview protocol will be developed to address subjects' diagnosis and history of illness, course of care, relationship with clinicians, knowledge of care options, how and with whom health care decisions are made, expectations and preferences, how care transitions are defined, how patients want care to proceed versus what actually happens, and how it feels to make decisions in the face of serious illness, among other areas. Transcripts will be analyzed using constant comparative analysis, facilitated by Atlas/ti software (Scientific Software, Berlin, Germany). Data will be used to develop an intervention that will target identified areas of need and define strategies to improve patients' knowledge of treatment options and ability to plan their care. This study will culminate in the submission of an RO1 or a K award that will test the efficacy of the intervention developed therein.
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