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

Simacek, Kristina MA; Raja, Priya BA; Chiauzzi, Emil PhD; Eek, Daniel PhD; Halling, Katarina MSc

doi: 10.1097/NCC.0000000000000415
ARTICLES: ONLINE ONLY
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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.

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

This study was sponsored by AstraZeneca and PatientsLikeMe, Inc.

Kristina Simacek, Priya Raja, and Emil Chiauzzi are employees of PatientsLikeMe and holds stock options in the company; the PatientsLikeMe Research department has received funding from AstraZeneca for the conduct of this research. The PatientsLikeMe Research Team has also received research funding (including conference support and consulting fees) from Abbvie, Accorda, Actelion, Amgen, Avanir, Biogen, Boehringer Ingelheim, Genentech, Genzyme, Janssen, Johnson & Johnson, Merck, Novartis, Sanofi, and UCB. The PatientsLikeMe R&D team has received research grant funding from Kaiser Permanente, the Robert Wood Johnson Foundation, Sage Bionetworks, The AKU Society, and the University of Maryland. Daniel Eek and Katarina Halling are employees of AstraZeneca.

The authors have no further conflicts of interest to disclose.

Correspondence: Kristina Simacek, MA, Department of Research and Informatics, PatientsLikeMe, 155 2nd St, Cambridge, MA 02141 (ksimacek@patientslikeme.com).

Accepted for publication May 18, 2016.

This is an open-access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially.

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Background

Ovarian cancer is the fifth leading cause of cancer-related death for women in America.1 Because symptoms are nonspecific, ovarian cancer is often diagnosed at an advanced stage and requires immediate, aggressive multimodal treatment. Although the order of administration may vary, treatment commonly involves cytoreductive surgery accompanied by chemotherapy or radiation.2 Furthermore, these therapies have widespread side effect profiles that may independently affect patient’s lives long after treatment completion. Beyond the physical impact of treatment, patients are faced with the impact of treatment on emotional well-being, personal relationships, and participation in daily and social activities.3,4

The brevity between diagnosis and treatment offers little time to form expectations about treatment and the impact of ovarian cancer on patients’ lives. Consequently, women with ovarian cancer often experience considerable stress, anxiety, and uncertainty over treatment decision making.5,6 Although the gap between patients’ hopes and expectations and their reality has been thought of as a predictor of poorer health-related quality of life, it has not been studied as part of treatment decision making in ovarian cancer patients.7 Instead, previous research has concentrated on informational needs, time constraints, and differences in opinion regarding treatment options.6,8–11 Although these factors can contribute to differing expectations between physicians and patients, there is sparse research on what patients specifically hope and expect from their treatment.12

To elicit perspectives regarding expectations related to treatment, this study leverages a patient-centric, online platform, PatientsLikeMe (PLM; www.patientslikeme.com). PatientsLikeMe is a data sharing and research platform with free membership visited by over 250 000 patients with over 2000 conditions. Patients use PLM to track their clinical data and to participate in moderated communities. PatientsLikeMe represents a mechanism to expand access to a diverse sample of patients, based on setting, location, demographic factors, type and stage of treatment, comorbidities, and so on. These attributes offer potential advantages over traditional clinic-based research settlings for sampling ovarian cancer patients as they may allow insight into a more diverse range of treatment regimens.13

This study aimed to understand patients’ hopes and expectations along stages of their ovarian cancer diagnosis and treatment episodes. Patients were also asked to reflect on previous treatment and share their expectations for the future. The objectives of this exploratory study are to (1) describe patient hopes and expectations at the beginning and end of each treatment episode and (2) describe how ovarian cancer and its treatment affect patients’ lives.

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Methods

Theoretical Framework

The theoretical framework used for this study is transition theory in nursing.14,15 Transitions are important points during a patient’s illness experience between times of relative stability.15 Transitions are marked by changes and differences, and the effects and meanings of changes and differences shape how people experience transitions. In particular, incongruous expectations about changes are thought to influence the way that people experience transitions.16 Previous research identified 5 common transitions for ovarian cancer patients: diagnosis, surgery and recovery, starting chemotherapy, managing symptoms, and recurrence.6 We build on this framework to explore how expectations before and after these transitions may shape the treatment experience and informational needs of ovarian cancer patients, as well as how ovarian cancer and its treatment affects patients’ lives.

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Study Design

A Web-based survey was administered to members 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.

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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.

For the purposes of this study, we analyzed 16 items from the following domains: (1) diagnosis experience (ovarian cancer knowledge at diagnosis, reaction to diagnosis); (2) treatment episodes (surgery, chemotherapy, radiation, targeted therapy, hormone therapy, other, and, “I have not had any treatment,” at first treatment, second treatment, and additional treatment); (3) hopes and expectations about treatment (at the beginning and the end of each episode of treatment they received); (4) hopes and expectations looking forward and looking back (hopes and expectations for the future after treatment and what they wish they had known before treatment); and (5) quality of life (changes in activities, relationships, emotions, work and home responsibilities, social obligations). The survey questions are shown in Table 1.

Table 1

Table 1

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Participants and Recruitment

The following inclusion criteria were used: a diagnosis of ovarian cancer, residence in the United States, age of 18 years or older, and a log-in to PLM within the last 120 days. As of July 2014, the ovarian cancer community on PLM had more than 280 registered patients, 166 of whom met inclusion criteria. To expand our base of ovarian cancer patients, a preliminary recruitment was conducted on Google and Facebook. An example recruitment ad placed on Facebook read “Life with ovarian cancer. Share your experiences to help others just like you live better, together. Get started.” During registration for PLM, patients consent to be contacted with requests to participate in research. Participation in research is not a membership requirement and does not affect use of the rest of the website. Eligible participants were sent a private message on the PLM platform. The following invitation text was used:

How does ovarian cancer affect you? PatientsLikeMe and our partners at AstraZeneca would like to hear more—straight from you.

In this survey, we’ll ask a few basics about your diagnosis, daily life and treatment experiences. We’ll also leave some questions open ended so you can add more detail. It will probably take about 20–30 minutes to complete, and you’ll help others just like you and our research partners better understand your experiences in living with, and treating, ovarian cancer.

Those who decided to participate by clicking on a link in the message were directed to an informed consent page. Those who did not want to participate could do nothing or click a button to opt-out of reminder messages for the questionnaire. Participants who partially completed the questionnaire or did not open the initial invitation message were sent up to 2 reminder messages. Median time for survey completion was 39 minutes. Participants were not financially compensated. This study was reviewed and approved by Western Institutional Review Board, Olympia, Washington, on January 6, 2014 (study 1143741).

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Sample

In total, a convenience sample of 30 members of PLM completed all items of the questionnaire out of the 166 invited to participate. There were 6 who opted out entirely, 14 who began the survey but did not complete all questions, and 116 who did not open the invitation message. The overall response rate of 18% was consistent with the response rate observed in previous studies on PLM.18–21 Participants were similar to the general population of patients with ovarian cancer on PLM in terms of age, race, and age at diagnosis. The study sample (n=30) reported a diagnosis of ovarian cancer, with a median age of 57 (range 35–72) and a median age at diagnosis of 51 (range 23–70). All participants were non-Hispanic and White. Slightly over half (17 out of 30) were diagnosed at stage 3 or later, with 5 participants diagnosed at stage 4. Participant demographics and clinical characteristics are shown in Table 2.

Table 2

Table 2

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Data Analysis

Results were analyzed using a method known as conventional content analysis,22–24 a method used in previous studies to understand patients’ experiences with other kinds of cancer treatment.25,26 This inductive approach emphasizes drawing conclusions from participants’ unique lived experiences and is best used when little is known about a specific experience. Unlike a directed content analysis where codes and categories for analyzing the data are derived from existing theory and research, conventional content analysis is used to understand a phenomenon without using preconceived categories.22 First, the entire text is read in full to develop an initial code list based on words used by the participants. Next, these initial codes are grouped and sorted to arrive at a final coding scheme. In addition, peer debriefing is used to increase internal validity of the codes.27 Finally, the coding scheme is applied to the entire body of text to quantify the frequencies with which the codes are used. For all free text responses, 2 authors (K.S. and P.R.) independently reviewed all text responses from the survey to develop a coding system. The codes were then merged and reviewed by both researchers to develop a unified coding scheme. Subsequently, 2 authors (K.S. and P.R.) independently coded all data using the unified coding scheme in Microsoft Excel. Frequencies of coded text were calculated and summarized into tables. Within each code, data were organized by clinical stage and treatment type.

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Results

Treatment Episodes

Participants reported some variation in their treatment episodes (Figure). Half of respondents (n = 15) reported following the standard protocol of surgery followed by chemotherapy. Surgery was the first treatment for 80% of participants (n = 24). Of these, 15 received chemotherapy as a second treatment. Alternate treatment trajectories generally involved chemotherapy or surgery in varying configurations. Seven participants reported surgery alone, whereas 1 had chemotherapy alone. Three had chemotherapy first, and 2 of these had surgery and chemotherapy again. One participant chose to have no treatment.

Figure

Figure

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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).

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Treatment Journey: Hopes and Expectations

Table 3 provides an overview of the frequency of themes reported regarding hopes and expectations before and after first treatment.

Table 3

Table 3

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FIRST TREATMENT

Before their first treatment, participants most frequently expressed the themes of general hopefulness and optimism (n = 9), hope for a cure (n = 6), and hope for treatment success (n = 6). These sentiments reflect the limited scope of expectations at the outset of treatment centered on the immediacy of coping with cancer and achieving a complete cure. As 2 participants expressed:

[I] was hoping surgery would show no cancer or at least the absolute removal of it in its entirety. (Stage 3)

I hoped that the cancer would be contained in a relatively small area and the debulking would be 100%. (Stage 3)

To these women, successful treatment meant the cancer would be gone and would not return. The focus on becoming cancer-free remained consistent in patients’ expectations both before and after their first treatment. After their first treatment, the most common hopes touched upon similar themes, such as treatment success (n = 7) and survival (n = 5). A notable minority (n = 5) had no hopes or expectations for the first treatment.

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SECOND TREATMENT

Participants who had a second treatment for ovarian cancer demonstrated a shift in their hopes and expectations (Table 4). At the beginning, most participants (12/21 who received a second treatment) hoped the second treatment would leave them cancer free, regardless of type of treatment. However, a few participants (4/21) expressed negative expectations, usually regarding chemotherapy. One patient stated,

I knew someone who died during chemo…from the chemo. I knew it was going to be a rough road. (Stage 2)

Another participant did not anticipate how difficult treatment would be,

Table 4

Table 4

I knew it would be bad, but it was worse. (Stage 2)

After the second treatment, hopes and expectations shifted from an emphasis on the immediate removal of cancer to a hope of returning to their normal lives, while recognizing the difficult journey they had endured:

I have always hoped that everything would heal quickly and I could “move on” with my life. (Stage 4)

I had made it through a very rough ride. Surprised that I had made it. The intention is not to waste what precious life I had left. (Stage 2)

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Perspective

LOOKING AHEAD: LONG-TERM SURVIVAL

Looking to the future, ovarian cancer patients who participated in the study hope for long-term survival. Expectations included remaining cancer free (n = 9), seeing cancer as an ongoing struggle (n = 5), and endeavoring to live to the best of their abilities (n = 7) (Table 5). One participant expressed,

Table 5

Table 5

I hope and expect to be cancer free for another 20 years! (Stage 4)

However, a minority of participants (n = 5) who perceived cancer as an ongoing concern did not share this optimism:

I can hope I am cured but the odds are 70% that it will return in the next 6 months. (Stage 3)

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LOOKING BACK: UNMET INFORMATIONAL NEEDS

When asked what they wish they had known before they made a decision about treatment, 40% (n = 12) said that there was nothing they wish they had known. However, about a quarter of participants (n = 8) stated they wish they had more information about treatments, specifically regarding how treatment side effects would impact daily activities and side effect management:

[I] had no idea that the chemo would absolutely “ground me” at home for 6 months and more due to the illness, weakness, fatigue, etc. I didn’t expect it to take so long to start to feel better. (Stage 3)

I wish more information would have been given to me about the effects of hair loss, the muscle aches and the neuropathy. (Stage 1)

I would have liked to know that when they took lymph nodes to prevent future cancer that I would end up with lymphedema. (Stage 4)

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Impact of Ovarian Cancer on Patients’ Life

Participants described a broad spectrum of impacts on health-related quality of life from both ovarian cancer and cancer treatment. This experience exerts a powerful yet nuanced influence on many domains of life such as emotions, personal relationships, and participation in daily and social activities. Frequency of themes reported regarding health-related quality of life is given by Table 6.

Table 6

Table 6

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EMOTIONS

Participants discussed a range of both positive and negative emotional impacts of ovarian cancer and its treatment on their lives. For half (n = 15), their journey through diagnosis and treatment had positive emotional impact—encompassing increased clarity and focus, empowerment, a deeper appreciation for life, and optimism for the future despite past and current challenges. Appreciation for life emerged as the strongest theme (n = 6). In the words of 1 participant,

…The good news is I now try and live each day to the fullest. I am still in cancer treatment so, some days that means that I can just barely get out of bed. Despite the limitations and side effects I live with daily, I am striving for the best life I can possibly squeeze in to the time I have. (Stage 4)

Conversely, 40% of participants (n = 12) struggled with anxiety, depression, anger, futility, and frustration over lack of support. One participant highlighted her complex emotional state:

I have been the whole gamut of emotions. The fight state, the give up state, I don’t give a damn state, please help state, sometimes it’s so hard just hanging in and hanging on. People don’t want to hear anything negative but I have been fighting for along time. (Stage 4)

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PERSONAL RELATIONSHIPS

Similarly, participants experienced both positive and negative impacts on personal relationships. Positive impacts include feeling closer to family and friends (family, n = 13; friends, n = 7), such as strengthening bonds in these relationships, and a heightened sense of community and support. One participant stated,

I would have to say my relationships are much better since my diagnosis…I know without a doubt that I am loved, valued, and supported…. (Stage 4)

To a lesser extent, negative impacts on personal relationships involved the burden of ovarian cancer and treatment on family and friends (family, n = 6; friends, n = 4), including a lack of support, loss of relationships, and difficulty maintaining relationships and intimacy.

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SOCIAL FUNCTIONING

Participants who experienced an impact on their social lives (n = 9) primarily described a negative impact, stating that their physical state impeded them from full participation in social activities or in meeting social obligations. Participants at various stages articulated this concern in the following ways:

After the chemo, I had difficulty with stamina for quite some time. No matter what I did, I got tired out easily…it certainly cut down on the social side of my life. (Stage 1)

Social… [I] stay in a lot more because of [my] immune system being compromised. (Stage 3)

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DAILY LIVING (WORK AND ACTIVITIES OF DAILY LIVING)

Participants reported significant work impairment due both to ovarian cancer (n = 10) and ovarian cancer treatment (n = 10). Many stated they took leave from work or lost employment because of ovarian cancer and are facing dire financial consequences as a result (Table 7):

I lost my job and cannot work so I currently have an income of $30 SSI and a ton of bills. I can barely take care of myself…. (Stage 2)

Work (on medical leave from my job)… Some activities (dining out, movies, shopping, etc.) I have cut back on are also due to lack of financial resources from being off work on unpaid leave. (Stage 3)

Other essential aspects of daily living were negatively affected by ovarian cancer or ovarian cancer treatment as well, such as household chores (ovarian cancer, n = 6; ovarian cancer treatment = 11) or physical activity/mobility (ovarian cancer, n = 7; ovarian cancer treatment, n = 10):

Table 7

Table 7

…Basically, cancer has affected my entire life. It has changed every activity I do because I now have a new “normal.” I am lucky that I can still function in the real world on a limited basis. (Stage 4)

I couldn’t get around without being in pain. No working, no walking my dog, no house cleaning, I was a slave to the pain. (Stage unknown)

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Discussion

This study was undertaken to describe patient expectations as they encountered transitions in their ovarian cancer treatment, as well as the alignment of these expectations with experiences. As treatments improve the chances for long-term survival, quality of remaining life will be an important consideration for ovarian cancer patients.28,29 An essential indicator of health-related quality of life is the alignment of patients’ expectations and their reality.7 Participants in this study reported that over the course of their treatment, their expectations tended to initially focus on outcomes such as survival. This was coupled with an underestimation of the extent that ovarian cancer treatment can impact aspects of quality of life such as emotions, relationships, and daily activities, revealing a misalignment between their expectations and experiences. However, after subsequent treatments, expectations shifted from survival to accepting a life with ovarian cancer, a desire to return to normalcy, and hope for an extended remission. Thus, these meaningful treatment transitions were marked by shifting expectations and points of misalignment with experiences and outcomes.

For most participants in this study, expectations centered on treatment outcomes rather than on the process of undergoing treatment. This is in contrast to a previous study that described women with ovarian cancer as adopting a short-term perspective on immediate concerns in self-management.6 This difference may be because of the larger sample size and treatment diversity of the current study participants. For instance, 2 of the 10 patients interviewed by Schulman-Green and colleagues6 had been diagnosed more than 2 years before, whereas in our study, median duration since diagnosis was about 2 years, with duration as high as 27 years. Given the short trajectory of ovarian cancer treatment, this may be a meaningful difference in terms of recall and relevance of immediate impacts of ovarian cancer treatment. Regardless of the effect of time, ovarian cancer patients must continually manage expectations around the disease and its potential progression as they look to the future.

Consistent with previous studies of the impact of ovarian cancer on women’s lives,3–5,11 women in the present study described the impact of ovarian cancer in terms of life-altering changes to their emotions, relationships, and participation in daily activities. Some of these impacts were unanticipated, with participants identifying an unmet need for better information about how treatment side effects, especially fatigue, would affect their daily life. One explanation for why they felt uninformed about side effects may be that patients with ovarian cancer may forget to report side effects and other symptoms because of anxiety during clinic visits,6 and this may result in underrecognition by providers of the need to discuss management of side effects. This result also mirrors Steele and Fitch,30 who found that although ovarian cancer patients’ physical needs were generally met, psychosocial needs and fatigue associated with ovarian cancer and its treatment were not being well addressed. Ovarian cancer treatment is not isolated from the rest of patients’ lives, and although they develop hopes and expectations for the future—a cure, full recovery, and survival—these results emphasize that it is equally as important to highlight the short-term impact of ovarian cancer, as well as long-term implications of living with the condition when setting expectations. Such discussions may empower patients to self-manage their adjustment more effectively after treatment.

A shift in expectations between first and subsequent treatment episodes suggests a change in how women interpreted a successful treatment outcome. Initially, women were sharply focused on an outright cure or a removal of cancer. However, in later episodes, although women continued to hope that treatments would be curative, they tempered their expectations within the realities of their condition. Instead, they hoped for long-term remission and the opportunity to return to their normal lives unencumbered by their condition, regardless of a complete cure. This may be reflective of the clinical shift toward treating ovarian cancer as a chronic disease that requires long-term follow-up and palliative care over time.31 Furthermore, this change in perspective may suggest a better understanding of and reconciliation with ovarian cancer prognosis—that disease management may be a more realistic outcome than a cure31 and underscores the importance of ensuring patients have an understanding of the impact of treatment side effects in both the short-term and long-term.

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Limitations

There are several limitations to this study. First, as the sample was a small convenience sample and is not representative of the general population of ovarian cancer patients and may lack generalizability.32 Second, self-reported data limit confirmation of diagnosis and treatment information reported by patients. Third, because this is a retrospective study, participants may experience recall bias of their experiences. Finally, participants did not follow identical treatment regimens and may have had different kinds of chemotherapy, which may have shaped their experiences differently. Despite these limitations, this study contributes to a deeper understanding of patient expectations of treatment trajectories in ovarian cancer, as well as the range of treatment regimens.

Future research should prospectively examine patient hopes and expectations and explore whether findings from this study are applicable to a broader sample of ovarian cancer patients. In addition, to account for effects of recall bias and changes in perspective due to time, a longitudinal cohort study of ovarian cancer patients during and after treatment would shed light on how transitions are experienced at the time of the event. Lastly, the multiplicity of treatment regimens followed by participants in this study supports previous findings that ovarian cancer treatment protocols can demonstrate high variability and underscores the importance of exploring the impact of these differences on the treatment experiences of ovarian cancer patients.32 Understanding reasons underlying treatment protocol variation and whether variations in treatment type are related to expectations will better elucidate treatment decision making.

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Implications for Practice

Based on the findings from this study, there is an identified need for early communication of the real-life consequences of treatment to ovarian cancer patients. Our findings suggest that emphasizing the impact of ovarian cancer treatment and its side effects may improve clinical care by harmonizing patient and provider perspectives and reduce psychological distress when expectations fall short.7 As caregivers, we have a responsibility to provide patients with accurate information about treatment, prognosis, and side effects. This will allow patients to set their expectations accordingly. For clinicians, it is imperative to maintain an open and honest discussion about realistic outcomes, which can facilitate increased patient engagement with their healthcare and lead to a better health-related quality of life.6 In addition, each patient should be assessed for his/her ability, receptiveness, and desire to consume information, as a previous study found that ovarian cancer patients may actively avoid getting too much information from providers.33

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Conclusion

By contextualizing treatment in terms of the transitions that ovarian cancer patients experience, a provider can assist patients in setting expectations for individual treatment outcomes and living a life with ovarian cancer. Clinical practice should facilitate the discussions between patients and clinicians by providing the relevant information to patients such that treatment decisions can be aligned with individual patient needs, desires, and concerns. These aspects may be overlooked and it is the responsibility of both pharmaceutical companies and treating physicians to ensure that information salient to patients is readily available to empower patients to understand and manage the trajectory of their disease and treatment journey.

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ACKNOWLEDGMENTS

We are grateful to the users of PLM who participated in this study.

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Keywords:

Goals of care; Online community; Ovarian cancer; Patient education; Patient preference; Patient-centered care; Psychosocial aspects of cancer; Qualitative research

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