Fears, Concerns for Patients and Loved Ones Intensify Due to Recurrent Ovarian Cancer

A study published in Gynecologic Oncology¹ found that patients with recurrent ovarian cancer had an intensified fear and concern about the disease, which extended to their loved ones. Supportive care interventions can help to address dyadic concerns as well as improve cohesion.

Approximately 70% of patients with ovarian cancer will experience recurrence.² Recurrence can affect both the patient and their family and friends as they navigate the different symptoms of the disease and adverse effects of treatment. Addressing the needs of the patient after recurrence can be done using supportive care, which can vary by the type of cancer or treatment. Supportive care for patients with ovarian cancer has not been adequately studied. This study aimed to identify the unmet needs (described as moderate to high) after recurrence, explore the relationships between patients and their caregivers with their unmet needs, and describe the changes in supportive care needs between before and after a recurrence incidence.

The Australian Ovarian Cancer Study Quality of Life (AOCS-QoL) was the used cohort of patients for the study, with the AOCS recruiting patients aged 18 to 79 years who had epithelial ovarian cancer that was diagnosed between January 2002 and June 2006. Familial or voluntary caregivers were included after patients still alive through May 2005 or recruited after that point were asked to invite them. The QOL survey was given to all participants after that point, with the survey done between 3 and 55 months after patient diagnosis.

Ovarian cancer recurrence occurs in approximately 70% of cases | Image credit: Lars Neumann - stock.adobe.com

All participants of the study were patients in the AOCS-QoL who had recurrence during the study and whose caregiver had also participated. Data were excluded if they were within 12 months of initial diagnosis and 6 months after recurrence if treatment was given to a patient in that time.

The Supportive Care Needs Survey-Short Form (SCNS-SF34) and SCNS-Partners and Caregivers (SCNS-P&C44) were used to assess supportive care needs for both patients and caregivers. All demographic information were self-reported by the participants and also self-reported their current treatment.

There were 798 participants in the AOCS-QoL, of whom 288 had recurrence, had completed at least 1 of the assessments, and contributed to the analysis. There were 140 caregivers included in the AOCS-QoL who completed at least 1 assessment after recurrence in the patient. This equaled 131 dyads of patients and caregivers who contributed to the third aim of exploring the relationship of unmet needs in patients and caregivers.

The mean (SD) length of time to recurrence was 15 (8) months after their initial diagnosis, and the mean (SD) age of the patients was 60 (10) years. A total of 92% of the patients were diagnosed with stage III or IV cancer when they entered the study. Caregivers had a mean (SD) age of 58 (14) years, with 71% being male and 69% being the partner of the patient.

Fewer patients who lived in the city (59% vs 68%) and had a matched caregiver (57% vs 72%) were receiving treatment vs not receiving treatment. A higher proportion of patients who did not have a partner were without a matched caregiver compared with those with a matched caregiver (32% vs 19%).

The T4 recurrence event led to increases in the mean scores of the domains involving psychological (9.2 points), health system/information (13.6), physical/daily living (6.6), care/support (11.4), and global (10.0) needs. Psychological needs also increased from T1 to T3 by 7.2 points. Health care service (5.9 points), psychological/emotional (5.9), and information (5.6) needs with the T4 recurrence were also reported as increased by caregivers. Caregiver work/social needs also saw an increase between T3 and T6, which included the time before and after the recurrence. Health care service needs saw an increase between T2 and T3, before the recurrence.

A total of 66% of patients and 69% of caregivers reported that they still had at least 1 moderate to high need that was unmet at their first survey, with “fear about the cancer spreading” acting as the top unmet need by 40% of patients. Other unmet needs included concerns about the worries of people close to you (34%), uncertainty about the future (33%), and worry that the results of the treatment were not in the patient’s control (30%).

The top unmet need for caregivers was concern about recurrence (41%), with recovery not as expected (31%) also being a major concern. Caregivers reported a need for reducing stress in a patient’s life when a patient reported uncertainty about the future or fearing the spread of the cancer. Caregivers reported fear about the patient’s physical or mental deterioration when the patient needed help with tiredness or feeling in control. Patients who reported needing help with feelings about death had caregivers who reported needing help with the patient’s recovery not going as expected.

There were some limitations to this study. Patients who were excluded were more likely to not have a partner, which has been associated with higher unmet needs and could underestimate the prevalence of needs in this survey. Selection bias is possible as healthier patients could have been more likely to enroll. The study took place between 2005 and 2007 and health care has evolved since this time, which could make the results less relevant to the present day. The patients in this study were all from a high-income country and may not be relevant to low- and middle-income countries.

The study concludes that recurrence presents a significant burden on both patients with ovarian cancer and their caregivers when it comes to the support demands that they feel are unmet. QOL can be improved in both patients and caregivers by addressing the joint needs of both through different strategies, including interventions, could help in the long term.

References

1. DiSipio T, Hartel G, Butow P, Webb PM, Beesley VL. Impact of disease recurrence on the supportive care needs of patients with ovarian cancer and their caregivers. Gynecol Oncol. 2024;185:33-41. doi:10.1016/j.ygyno.2024.02.012
2. Recurrence. Ovarian Cancer Research Alliance. 2024. Accessed June 26, 2024. https://ocrahope.org/patients/diagnosis-and-treatment/recurrence