==== Front Support Care Cancer Support Care Cancer Supportive Care in Cancer 0941-4355 1433-7339 Springer Berlin Heidelberg Berlin/Heidelberg 37389743 7903 10.1007/s00520-023-07903-3 Research Exploring the experiences and priorities of women with a diagnosis of ovarian cancer Pasvanis Maree 1 Hegarty Sue 2 Russell Hayley 2 https://orcid.org/0000-0003-2903-4688 Peate Michelle 1 https://orcid.org/0000-0001-6742-1940 Marino Jennifer L. jennifer.marino@unimelb.edu.au 13456 1 grid.1008.9 0000 0001 2179 088X Department of Obstetrics and Gynaecology, Royal Women’s Hospital, University of Melbourne, Parkville, VIC Australia 2 Ovarian Cancer Australia, Melbourne, VIC Australia 3 grid.1058.c 0000 0000 9442 535X Centre for Adolescent Health, Murdoch Children’s Research Institute, Parkville, VIC Australia 4 grid.1008.9 0000 0001 2179 088X Department of Paediatrics, University of Melbourne, Parkville, VIC Australia 5 grid.1008.9 0000 0001 2179 088X Centre for Epidemiology and Biostatistics, University of Melbourne, Parkville, VIC Australia 6 grid.1013.3 0000 0004 1936 834X Discipline of Child and Adolescent Health, University of Sydney, Westmead, NSW Australia 30 6 2023 30 6 2023 2023 31 7 43223 1 2023 23 6 2023 © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/ Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. Purpose Ovarian cancer is the third most common gynaecological cancer among women, yet remains under-researched. Past studies suggest that women who present with ovarian cancer have more supportive care needs compared to women experiencing other gynaecological cancers. This study explores the experiences and priorities of women with a diagnosis of ovarian cancer and whether age may influence these needs and experiences. Methods Participants were recruited by a community organization, Ovarian Cancer Australia (OCA), via a social media campaign promoted on Facebook. Participants were asked to rank priorities around living with ovarian cancer, and to endorse which supports and resources they had used to address those priorities. Distributions of priority rankings and resource use were compared by age (19-49 vs. 50+ years). Results Two hundred and eighty-eight people completed the consumer survey and most respondents were 60-69 years (33.7%). Priorities did not vary by age. Fear of cancer recurrence was identified by 51% respondents as the most challenging aspect of having ovarian cancer. Compared with older respondents, a higher proportion of young participants were more inclined to use a mobile app version of the OCA resilience kit (25.8% vs 45.1%, p=0.002) and expressed interest in using a fertility preservation decision aid (2.4% vs 25%, p<0.001). Conclusion Fear of recurrence was participants’ primary concern, presenting an opportunity to develop interventions. Information delivery needs to consider age-specific preferences to better reach the target audience. Fertility is more important to younger women and a fertility preservation decision aid may address this need. Keywords support resources care resources priority ranking support services University of MelbourneOpen Access funding enabled and organized by CAUL and its Member Institutions issue-copyright-statement© Springer-Verlag GmbH Germany, part of Springer Nature 2023 ==== Body pmcIntroduction Ovarian cancer is the third most common gynaecological cancer, yet remains under-researched [1, 2]. There are multiple treatment options that are considered first-line care for treating ovarian cancer, but despite this, recurrence occurs in as many as 70% of cases [3]. The remittent cycle of recurrence and poor prognosis distinguishes women with ovarian cancer from other cancer patients [4]. Supportive care needs of women experiencing ovarian cancer vary. The most frequently reported needs fall into psychological and system/information domains, mainly fear of cancer progression/recurrence, and treatment concerns – particularly adverse side effects, and options related to future parenthood and family planning [5]. Needs may conflict, and supportive care resources are finite. Identifying patient priorities, a central tenet of patient-centred care, addresses both these issues. Priorities may vary over time as women’s experiences with cancer change. Priorities may also vary by age. For instance, as definitive treatment for ovarian or other gynaecological cancers typically requires bilateral salpingo-oophorectomy and hysterectomy, treatment-related infertility and fertility preservation is of particular interest to women diagnosed before 50 years of age [6, 7]. Other priorities which may also be influenced by age are the delivery of health information and interaction with technology [8]. While a growing proportion of older women is accessing health information technologies, an age divide remains. Studies have shown that few health information websites have been designed to accommodate a wide audience; they typically target a younger audience [9, 10]. This could explain why many older people are dissatisfied with the health information they are able to find online [11]. It is true of most cancers, ovarian cancer included, that the majority of people who are affected are older people [12]. Therefore, it is important for us to be able to cater to the priorities of women whatever their age by providing them with tailored online health information. As patient experience data has traditionally been limited, it has been difficult to provide the level of patient-centred care that these women require and which can be used to offer them better patient-centred care and ultimately progress toward improving their quality of life. Consumer support organisation Ovarian Cancer Australia (OCA) conducted a survey in 2017 to assess the psychosocial and informational needs of patients and survivors of ovarian cancer. Using these data, the present study aimed to explore the experiences and priorities of women with ovarian cancer and whether these priorities differed among women according to age. Methods Ethics and consent This is a secondary analysis of data collected jointly by OCA and a commercial consultancy (Healthcare Management Advisors Pty) to guide the delivery of support services and information for women living with ovarian cancer [13]. As the purpose of original data collection was not research, Human Research Ethics Committee oversight and informed consent to research were not appropriate. Data were collected anonymously by web survey and respondents could end the survey at any time, limiting risk to participants. Although respondents were offered the option to provide contact information at the end of the survey, all such identifiers were removed from the dataset furnished by OCA for secondary analysis. Approval for the secondary analysis was provided by the University of Melbourne Human Research Ethics STEMM2 Committee, under reference number 2022-24679-35230-3. This analysis was conducted in accordance with the guidelines of the University of Melbourne, the National Health and Medical Research Council (NHMRC), and the Declaration of Helsinki. Recruitment Participants were recruited by OCA though a 5-week Facebook social media campaign. An estimated 1500 people were “reached” (were shown material related to the campaign), of whom 288 completed the survey. Data collection and analysis Demographics details collected included age (in ten-year categories from 19 to 89), gender (female, male, prefer not to specify), and locality remoteness using the Accessibility/Remoteness Index of Australia, derived from postcodes [14] (major city, inner regional, outer regional/remote). Clinical details included cancer stage at diagnosis, current status (diagnosis, primary treatment, post-treatment, recurrence, remission, end-of-life/palliation), and time since first diagnosis. Participants ranked nine aspects of living with ovarian cancer from 1 (most) to 9 (least) challenging (“priority rankings”): fear of cancer recurrence, feeling isolated, financial concerns, finding information on treatment options, body image issues, finding support for family and friends, changes to sexual function, finding information on genetic counselling and travelling costs. Participants also selected which support and information resources they had used to address these priorities. Resources included: friends and family; cancer support group; online forum/community; telephone service or group; one-on-one counselling; hospital treatment team; OCA website; other websites; webinars or podcasts; information sessions; other hospital services such as social work or psychology; and “other – please specify”. Participants were asked which support and information resources from OCA they had ever used: resilience kit; face-to-face support groups; tele-support groups; support and information hotline; website information; fact sheets; family and friends’ booklet; consumer information forums; online support forum; webinars/webcasts; and “other – please specify”. Participants were also asked how likely they would be to use possible new support and information resources, with response options of “very likely”, “somewhat likely”, “not sure”, “somewhat unlikely”, and “very unlikely”. The resources were: a telephone-based wellbeing program that provides diet and exercise advice; an 8-week online program targeting anxiety and depression; an online support group; face-to-face information forums; a case management service; a factsheet of post treatment information for ovarian cancer survivors; a mobile app version of the OCA Resilience Kit (evidence-based information on living with ovarian cancer); a factsheet on the impact of ovarian cancer on sexuality; and a factsheet on managing fear of cancer recurrence. In a separate item, participants were asked how likely they would be to use a fertility preservation decision aid (a tool to facilitate complex health decisions), with the same responses as for resources with the addition of “this service does not apply to me”. Distributions of clinical characteristics and resource use were summarised using frequencies and proportions. The distributions of priority rankings were summarised using medians, interquartile ranges and ranges. Distributions were compared between those aged 19 to 49 (“younger participants”) and those aged 50 or above (“older participants”). This age division was chosen because reproductive stage may change life needs and disease progression, and the average age of menopause in Australia is 51 years [15]. Clinical characteristics and resource use were compared using χ2 tests. Priority rankings were compared using the Wilcoxon signed-rank test. Both general and OCA-specific resources were further classified as “technological” and “non-technological” and their use compared using using χ2 tests. Technological resources were those requiring the use of the telephone or internet; non-technological resources were those using paper or face-to-face contact. Data were analysed using Stata 15 (StataCorp. 2017. Stata Statistical Software: Release 15. College Station, TX: StataCorp LLC). Results Population demographics The study cohort included participants aged 19 to 89 with the most common age bracket being 60-69 years of age (n=97, 33.7%, Table 1). Ninety-nine percent of participants identified as female (n=285). For reasons of brevity, this paper will refer to study participants as ‘women’ given that nearly all identified as female. Most participants reported living in a major city (n=215; 74.6%). There was no significant difference between the locality remoteness of younger respondents and older respondents (p=0.3). Fifty-seven percent of respondents (n=134) reported that they had been treated in a private hospital while 43% (n=101) were admitted to a public hospital for cancer treatment. Most respondents reported being diagnosed at Stage III (n=95; 45.5%) at time of diagnosis. Younger respondents (<50 years) were more likely to have been diagnosed with an early stage (Stage I and II) ovarian cancer (n=127; 60.8%) than older respondents (n=51; 32.3%; p<0.001).Table 1 Demographics and clinical characteristics of participants who have had a diagnosis of ovarian cancer n (%) All Participants 288 (100.0) Age  19-29 years 7 (2.4)  30-39 years 22 (7.6)  40-49 years 34 (11.8)  50-59 years 80 (27.8)  60-69 years 97 (33.7)  70-89 years 48 (16.7) Total, n (%) Under 50 years old, n (%) 50 years old and over, n (%) p-valuea Gender  Female 285 (99.0) 63 (100.0) 222 (98.7) 0.4  Male 3 (1.0) 0 (0.0) 3 (1.3) Locality remoteness  Major city 215 (74.6) 44 (69.8) 171 (76.0) 0.4  Inner regional 53 (18.4) 13 (20.6) 40 (17.8)  Outer regional/ Remote 18 (6.3) 6 (9.5) 12 (5.3)  Not specified 2 (0.7) 0 (0) 2 (0.9) Hospital care  Private 134 (46.5) 29 (46.0) 105 (46.7) 0.2  Public 101 (35.1) 27 (42.9) 74 (32.9)  Unsure/Unidentified 53 (18.4) 7 (11.1) 46 (20.4) Stage at time of diagnosis  Stage I 46 (16.0) 19 (30.2) 27 (12.0) 0.002  Stage II 36 (12.5) 12 (19.0) 24 (10.7)  Stage III 95 (33.0) 15 (23.8) 80 (35.6)  Stage IV 32 (11.1) 5 (7.9) 27 (12.0)  Unsure/Other 27 (9.4) 6 (9.5) 21 (9.3)  Not specified 52 (18.1) 6 (9.5) 46 (20.4) Cancer pathway  Primary treatment/ Recently diagnosed 18 (6.3) 8 (12.7) 10 (4.4) 0.09  Recovering from treatment 32 (11.1) 9 (14.3) 23 (10.2)  Recurrence/ Palliative (EoL) care 46 (16.0) 9 (14.3) 37 (16.4)  Remission 122 (42.4) 28 (44.4) 94 (41.8)  Unsure/Other 18 (6.3) 3 (4.8) 15 (6.7)  Not specified 52 (18.1) 6 (9.5) 46 (20.4) Time since first diagnosis  <24 months 45 (15.6) 20 (31.7) 25 (11.1) <0.001  24-59 months 94 (32.6) 21 (33.3) 73 (32.4)  60-119 months 61 (21.2) 6 (9.5) 55 (24.4)  120+ months 34 (11.8) 10 (15.9) 24 (10.7)  Not specified 54 (18.6) 6 (9.5) 48 (21.3) aChi-squared test (cell n≥5), Fisher’s exact test (cell n<5) Priorities Just over half of the respondents (n=99, 51%) ranked fear of cancer recurrence as the most challenging aspect of living with ovarian cancer, followed by ‘feeling isolated’ (n=21, 11.9%, Table 2). The lowest priority was given to travelling costs. There were no significant differences to priority rankings by age.Table 2 Ranking of challenges by participants who had or currently have a diagnosis of ovarian cancer (1, most challenging; 9, least challenging) Median (IQR) p-valuea Total (n = 288) Under 50 years old (n=63) 50 years old and over (n=225) Fear of cancer recurrence 1 (1─4) 1 (1─3) 1 (1─4) 0.8 Feeling isolated 4 (2─7) 3.5 (2─6) 4 (2─7) 0.2 Financial concerns 5 (2─7) 3.5 (2─6) 5 (3─7) 0.1 Finding information on treatment options 5 (3─6) 5 (3─6) 5 (3─6) 0.8 Body image issues 5 (3─7) 5 (3─7) 5 (3─7) 0.2 Finding support for family and friends 6 (4─8) 5.5 (3─8) 6 (4─8) 0.08 Changes to sexual function 6 (4─8) 5.5 (3─7) 6 (4─8) 0.5 Finding information on genetic counselling 6 (4─8) 7 (5─8) 6 (4─8) 0.06 Travelling costs 7 (5─9) 8 (5─9) 7 (4─9) 0.2 aWilcoxon signed-rank test for medians, chi-squared test for categorical variables Support types and resources accessed When the participants were asked which supports and resources they used (Table 3), for most there were no differences by age. The vast majority (n=205; 71.2%) sought out support from friends and family, and this did not differ by age (p=0.05). Participants also often sought out support from their ‘hospital treatment team’ (n=149, 51.7%). OCA resources were also commonly accessed, with ‘information on the Ovarian Cancer Australia website’, referring to the general information available on the website, utilised by 48.3% (n= 139). Of the categorised OCA resources, the ‘resilience kit’ – a booklet produced by OCA with evidence-based information on living with ovarian cancer – was the most accessed (n=136, 47.2%). Supports and resources that were accessed differently across younger and older groups (respectively) were ‘information from other websites’ (47.6% vs 31.1%, p=0.02), ‘information sessions’ (9.5% vs 21.8%, p=0.03), ‘face-to-face support groups’ (6.4% vs 16.4%, p=0.04), and ‘webinars and webcasts’ (4.8% vs 16.9%, p=0.01). To determine whether the difference observed for use of ‘information on other websites’ (p=0.02) and ‘webinars and webcasts’ (p=0.01) was associated with age, we examined the relationship of age to use of any technological resource, which was not significant (p=0.2). To ascertain whether the difference observed for use of ‘information sessions’ (p=0.03) and ‘face-to-face support groups’ (p=0.04) was due to a preference for non-technological resources, we examined the relationship of age to the use of any non-technological resource, which was not significant (p=0.06).Table 3 Resources accessed by people who have had a diagnosis of ovarian cancer n (%) p-valuea Total Under 50 years old 50 years old and over Supports and resources accessed  Friends and family 205 (71.2) 51 (81.0) 154 (68.4) 0.5  Cancer support group 85 (29.5) 15 (23.8) 70 (31.1) 0.3  Online forum/community 72 (25.0) 18 (28.6) 54 (24.0) 0.5  Telephone support service or group 40 (13.9) 10 (15.9) 30 (13.3) 0.6  One-on-one counselling 62 (21.5) 18 (28.6) 44 (19.6) 0.1  Hospital treatment team 149 (51.7) 32 (50.8) 117 (52.0) 0.9  Information on the OCA website 139 (48.3) 33 (52.4) 106 (47.1) 0.5  Information on other websites 100 (34.7) 30 (47.6) 70 (31.1) 0.02  Webinars or podcasts 38 (13.2) 5 (7.9) 33 (14.7) 0.2  Information sessions 55 (19.1) 6 (9.5) 49 (21.8) 0.03  Other hospital services (e.g. social work, psychology) 63 (21.9) 14 (22.2) 49 (21.8) 0.9  Other 41 (14.2) 7 (11.1) 34 (15.1) 0.4 Number of resources used  0 52 (18.1) 6 (9.5) 46 (20.4) 0.1  1─3 89 (30.9) 24 (38.1) 65 (28.9)  4+ 147 (51.0) 33 (52.4) 114 (50.7)  Median (IQR) 4 (2─5) 4 (2─5) 4 (1─5) Number of technological resources used  0 106 (36.8) 18 (28.6) 88 (39.1) 0.3  1─2 126 (43.8) 30 (47.6) 96 (42.7)  3+ 56 (19.4) 15 (23.8) 41 (18.2)  Median (IQR) 1 (0─2) 1 (0─2) 1 (0─2) Number of non-technological resources used  0 58 (20.1) 7 (11.1) 51 (22.7) 0.02  1─2 123 (42.7) 36 (57.1) 87 (38.7)  3+ 107 (37.2) 20 (31.8) 87 (38.7)  Median (IQR) 2 (1─3) 2 (1─3) 2 (1─3) OCA resources used  Resilience kit 136 (47.2) 31 (49.2) 105 (46.7) 0.7  Face-to-face support groups 41 (14.2) 4 (6.4) 37 (16.4) 0.04  Tele-support 31 (10.8) 5 (7.9) 26 (11.6) 0.4  Support and information hotline 17 (5.9) 3 (4.8) 14 (6.2) >0.9  Website information 103 (35.8) 27 (42.9) 76 (33.8) 0.2  Fact sheets 70 (24.3) 16 (25.4) 54 (24.0) 0.8  Family and friends' booklet 32 (11.1) 7 (11.1) 25 (11.1) >0.9  Consumer information forums 27 (9.4) 27 (7.9) 22 (9.8) 0.7  Online support forum 25 (8.7) 7 (11.1) 18 (8.0) 0.4  Webinars and webcasts 41 (14.2) 3 (4.8) 38 (16.9) 0.01  Other 9 (3.1) 1 (1.6) 8 (3.6) 0.7 Number of OCA resources used  0 134 (46.5) 29 (46.0) 105 (46.7) 0.9  1─2 54 (18.8) 13 (20.6) 41 (18.2)  3+ 100 (34.7) 21 (33.3) 79 (35.1)  Median (IQR) 1 (0─3) 1 (0─3) 1 (0─4) Number of technological OCA resources used  0 162 (56.3) 33 (52.4) 129 (57.3) 0.3  1─2 94 (32.6) 25 (39.7) 69 (30.7)  3+ 32 (11.1) 5 (7.9) 27 (12.0)  Median (IQR) 0 (0─1) 0 (0─1) 0 (0─2) Number of non-technological OCA resources used  0 139 (48.3) 30 (47.6) 109 (48.4) 0.8  1 61 (21.2) 15 (23.8) 46 (20.4)  2+ 88 (30.6) 18 (28.6) 70 (31.1)  Median (IQR) 1 (0─2) 1 (0─2) 1 (0─2) aChi-squared test (cell n≥5), Fisher’s exact test (cell n<5) Just over fourteen percent of participants specified ‘other’ supports and resources used, including: support from GPs (n=7), support from groups on social media platforms (e.g. Facebook) (n=2) and massage therapy and meditation/mindfulness (n=3). Almost one in five respondents (n=52; 18.1%) accessed none of the supports or resources explored in the consumer survey; this proportion did not significantly differ by age (p=0.1). Likelihood of accessing resources Echoing participant priority rankings, nearly two-thirds (n=137; 63.1%) were ‘very likely’ to access a ‘managing fear of cancer recurrence’ factsheet if available, 55.6% (n=120) would ‘very likely’ access a ‘post-treatment information’ factsheet, 29.9% (n=64), would be ‘very likely’ to use a ‘impact of ovarian cancer on sexuality’ factsheet, and 29.8% (n=65) would be ‘very likely’ to access a case management service (Table 4). These did not differ by age (p=0.8, 0.7, 0.05, and 0.9, respectively).Table 4 Likelihood of people who have had a diagnosis of ovarian cancer accessing supports and resources Likelihood of using … N (%) p-value* Total Under 50 years old 50 years old and over … a telephone-based wellbeing program that provides diet and exercise advice (n=215)  Very unlikely 36 (16.7) 10 (19.2) 26 (15.6) 0.9  Somewhat unlikely 30 (14.0) 8 (15.4) 22 (13.5)  Not sure 34 (15.8) 7 (13.5) 27 (16.6)  Somewhat likely 73 (34.0) 18 (34.6) 55 (33.7)  Very likely 42 (19.5) 9 (17.3) 33 (20.3) … an 8-week online program targeting anxiety and depression (n=211)  Very unlikely 27 (12.8) 3 (5.9) 24 (15.0) 0.3  Somewhat unlikely 31 (14.7) 6 (11.8) 25 (15.6)  Not sure 26 (12.3) 5 (9.8) 21 (13.1)  Somewhat likely 69 (32.7) 22 (43.1) 47 (29.4)  Very likely 27 (12.8) 15 (29.4) 43 (26.9) … online support groups (n=207)  Very unlikely 23 (11.1) 4 (8.0) 19 (12.1) 0.8  Somewhat unlikely 29 (14.0) 7 (14.0) 22 (14.0)  Not sure 37 (17.9) 7 (14.0) 30 (19.1)  Somewhat likely 78 (37.7) 20 (40.0) 58 (36.9)  Very likely 40 (19.3) 12 (24.0) 28 (17.8) … face-to-face information forums (n=216)  Very unlikely 17 (7.9) 3 (5.8) 14 (8.5) 0.4  Somewhat unlikely 24 (11.1) 6 (11.5) 18 (11.0)  Not sure 41 (19.0) 14 (26.9) 27 (16.5)  Somewhat likely 54 (25.0) 14 (26.9) 40 (24.4)  Very likely 80 (37.0) 15 (28.9) 65 (39.6) … post-treatment information factsheet for ovarian cancer survivors (n=216)  Very unlikely 10 (4.6) 1 (1.9) 9 (5.5) 0.7  Somewhat unlikely 4 (1.9) 1 (1.9) 3 (1.8)  Not sure 17 (7.9) 4 (7.7) 13 (7.9)  Somewhat likely 65 (30.1) 13 (25.0) 52 (31.7)  Very likely 120 (55.6) 33 (63.5) 87 (53.1) … a mobile app version of the OCA resilience kit (n=210)  Very unlikely 32 (15.2) 2 (3.9) 30 (18.9) 0.002  Somewhat unlikely 21 (10.0) 1 (2.0) 20 (12.6)  Not sure 37 (17.6) 9 (17.7) 28 (17.6)  Somewhat likely 56 (26.7) 16 (31.4) 40 (25.2)  Very likely 64 (30.5) 23 (45.1) 41 (25.8) … factsheet on impact of OC on sexuality (n=214)  Very unlikely 29 (13.6) 2 (3.9) 27 (16.7) 0.04  Somewhat unlikely 31 (14.5) 4 (7.7) 27 (16.7)  Not sure 32 (15.0) 9 (17.3) 23 (14.2)  Somewhat likely 58 (27.1) 17 (32.7) 41 (25.3)  Very likely 64 (29.9) 20 (38.5) 44 (27.2) … factsheet on managing fear of recurrence (n=217)  Very unlikely 11 (5.1) 1 (1.9) 10 (6.1) 0.8  Somewhat unlikely 5 (2.3) 1 (1.9) 4 (2.4)  Not sure 14 (6.5) 4 (7.7) 10 (6.1)  Somewhat likely 50 (23.0) 11 (21.2) 39 (23.6)  Very likely 137 (63.1) 35 (67.3) 102 (61.8) … a fertility preservation decision aid (n=218)  This service does not apply to me 171 (78.4) 31 (59.6) 140 (84.3) <0.001  Very unlikely 9 (4.1) 2 (3.9) 7 (4.2)  Somewhat unlikely 3 (1.4) 2 (3.9) 1 (0.6)  Not sure 7 (3.2) 0 7 (4.2)  Somewhat likely 11 (5.1) 4 (7.7) 7 (4.2)  Very likely 17 (7.8) 13 (25.0) 4 (2.4) … a case management service (n=218)  Very unlikely 36 (16.5) 7 (13.5) 29 (17.5) 0.9  Somewhat unlikely 21 (9.6) 6 (11.5) 15 (9.0)  Not sure 42 (19.3) 10 (19.2) 32 (19.3)  Somewhat likely 54 (24.8) 15 (28.9) 39 (23.5)  Very likely 65 (29.8) 14 (26.9) 51 (30.7) aChi-squared test (cell n≥5), Fisher’s exact test (cell n<5) Age differences were seen across two resources. A greater proportion of younger respondents (n=23; 45.1%) were ‘very likely’ to use a mobile app version of the OCA resilience kit compared to older respondents (n=41, 25.8%; p=0.004). Also, a larger proportion of younger participants (n=13; 25%), compared to older participants (n=4; 2.4%), were ‘very likely’ to use a fertility preservation decision aid (p<0.001). Most participants (n=171, 78.4%; p=<0.001) responded that they would not use a fertility preservation decision aid as it did not apply to them. The response “This service does not apply to me” regarding the use of a fertility preservation aid, was selected by more older participants (n=140; 84.3%) than younger participants (n=31; 59.6%) upon age comparison analysis (p<0.001). Discussion This consumer survey was conducted to analyse the support and information resources for ovarian cancer provided by OCA and in general. The current secondary analysis was intended to explore care experiences and priorities in support services based on feedback from women with ovarian cancer. Our main finding was that, in contrast to previous findings [16–18], age does not affect common concerns - fear of cancer recurrence, treatment side effects and the uncertainties surrounding ovarian cancer. The main priority for study participants was to manage fear of cancer recurrence. In women with ovarian cancer, fear of cancer recurrence (and fear of cancer progression) can be overwhelming [19–22], and is more extreme than in women diagnosed with other common cancers [23]. Fear of cancer recurrence amongst women with breast cancer is considerably lower and a diagnosis of breast cancer does not elicit the same degree of stress about recurrence as a diagnosis of ovarian cancer does [24]. This is reasonable considering the average rate of recurrence in ovarian cancer is 70% [25], compared to 30% in breast cancer [26, 27] and under 5% in low-risk endometrial carcinoma (the most common gynaecological cancer [28]. Although we observe more cancer recurrence in later stage diagnoses of ovarian cancer, this is not to say that women diagnosed with earlier stages have less fear of cancer recurrence than those with late stage ovarian cancer [29]. Fear of cancer recurrence has been consistently associated with poorer quality of life, depression, anxiety and impaired daily functioning [30, 31]. The long-term effect of fear of cancer recurrence is exacerbated by the inability to come to terms with the priorities that people diagnosed with cancer experience [19, 29, 32]. Thus, there is need for support in managing this. Participants reported a high likelihood of using a factsheet for managing fear of cancer recurrence, an inexpensive option for support. For a psychological approach, a mind-body intervention (i.e. an intervention that aims to improve physical and mental health, e.g. yoga, tai chi, and Pilates) has shown to be effective for managing the fear of cancer recurrence/ progression in breast cancer patients [33, 34]. Although there have been no studies conducted to support this in ovarian cancer, this intervention has the potential to be adapted for women with ovarian cancer. Differences by age - greater use of non-OCA websites and increased likelihood to use a mobile app amongst younger participants and older participants being more likely to use face-to-face support groups, information seminars and webinars – could, in part, be a reflection of confidence and comfort with technological resources [35] and also a reflection of lifestyle differences. Although the smart phone has increased technology access, it has been reported that older adults with chronic illness may not want to engage with internet-based and mobile health (mHealth) resources [36]. There is limited recent data in ovarian cancer, but our data suggest something similar. Although this technology-hesitancy may change over time as the aging population becomes more familiar with technology, it also illustrates that to ensure that patients access and gain benefit from resources they need to be designed with patient preferences in mind. In this case, having both online and paper-based resources may be useful. Considering 78% of the group were over 50 years of age when they completed the survey (i.e. beyond their reproductive years), is it unsurprising that most (78%) participants indicated that the fertility decision aid was not of benefit to them. Most participants would have come to a point where they have no need for this information (having completed their families, have no desire for children, or may have already accessed fertility information). In addition to this, it came as no surprise that a greater proportion of younger women were interested in fertility decision. Fertility preservation is important to young women with ovarian cancer [7] and many younger women with ovarian cancer experience a significant amount of emotional distress when it comes to making a decision about fertility preservation [37]. Although there was only a small sub-set of participants that fit in this group (n=47), is it telling that four out of five of those who felt that a fertility decision aid would be relevant to them were also likely to want to use one. Fertility decision aids are effective tools to supporting oncofertility decision-making – with a growing body of evidence for improved decision-related outcomes in women with breast cancer, and other cancer types [38–40]. Clinical guidelines also recommend their use in the oncofertility context [41]. However, no decision aids exist for ovarian cancer. In considering the utility of a decision aid for this group, consideration needs to be given for the impact of poor prognosis (as families may need to take into account the possibility of a maternal loss on future children), higher risk of cancer recurrence after or during pregnancy, and reseeding risks from tissue that has not undergone cancer treatment. More research is still needed to explore and understand the nuances of the oncofertility decisions made by young women relating to fertility preservation in ovarian cancer. Limitations The survey was subject to selection bias as we used a convenience sample recruited by advertisement on social media,. It is not possible to calculate a response rate, as there is no appropriate denominator for the sample – “reach” is an estimate of the number of people who were exposed to the advertisement, not those who engaged with it or could have been eligible to participate. It may be that the study sample is not representative of women with ovarian cancer in terms of age or priorities. While the age of 50 was used as a cut-off to reflect change in reproductive status, potentially, a different cut off may have shown differences between groups. Further, the collection of age in categories limited comparisons by age. Relatively few younger women participated and their menopausal status was not recorded. We were thus unable to assess their priorities relating to the cessation of their reproductive life, if applicable. The survey also did not specify type of ovarian cancer. Another limitation to this survey was that the ‘usefulness’ of the resources which respondents accessed was not assessed. As noted elsewhere, no further detail was obtained when respondents selected “This service does not apply to me” regarding their likelihood of using a fertility preservation decision aid. Conclusion Supportive care priorities for women with ovarian cancer did not vary by age. Fear of recurrence was the primary concern. Future research should prioritise the development of interventions to address these priorities to improve patient experiences and their quality of life. Modes of information delivery need to consider age of the target audience –with younger women preferring to interact with technology and being more eager to receive information via mobile-app type interventions and tools compared to older women. Fertility is more important to younger women and a fertility preservation decision aid may address this need. Acknowledgements We thank the participants for generously sharing their experiences through the 2017 OCA Consumer Survey. We thank OCA for their cooperation. We also acknowledge Healthcare Management Advisors (HMA) for their contribution towards the survey. Michelle Peate was supported by a University of Melbourne MDHS Fellowship. Author contribution Conceptualisation: all authors; Data collection: Sue Hegarty and Hayley Russell; Data analysis: Maree Pasvanis; Writing – original draft: Maree Pasvanis; Writing - review and editing: all authors; Supervision of Maree Pasvanis Honours thesis: Jennifer L. Marino and Michelle Peate. All authors read and approved the final manuscript. Funding Open Access funding enabled and organized by CAUL and its Member Institutions Michelle Peate was supported by a University of Melbourne MDHS Fellowship. No other funds were received to support this work. Data availability Data are available on request at the discretion of Ovarian Cancer Australia. Code availability N/A. Declarations Ethics approval and consent to participate (also presented in manuscript text) This is a secondary analysis of data collected jointly by OCA and a commercial consultancy (Healthcare Management Advisors Pty) to guide the delivery of support services and information for women living with ovarian cancer [13]. As the purpose of data collection was not research, Human Research Ethics Committee oversight and informed consent to research were not appropriate. Data were collected anonymously by web survey and respondents could end the survey at any time, limiting risk to participants. Although respondents were offered the option to provide contact information at the end of the survey, all such identifiers were removed from the dataset furnished by OCA for secondary analysis. Approval for the secondary analysis was provided by the University of Melbourne Human Research Ethics STEMM2 Committee, under reference number 2022-24679-35230-3. Consent to publish N/A. Competing interests The authors have no relevant financial or non-financial interests to disclose. Michelle Peate and Jennifer L. Marino shared senior author Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. ==== Refs References 1. Seib C Harbeck E Porter-Steele J Anderson D Chambers S Understanding cancer-related distress and supportive care needs in women with gynaecological cancer: a thematic analysis Maturitas 2019 124 145 10.1016/j.maturitas.2019.04.104 2. Urbaniec OA Collins K Denson LA Whitford HS Gynecological cancer survivors: assessment of psychological distress and unmet supportive care needs J Psychosoc Oncol 2011 29 534 551 10.1080/07347332.2011.599829 21882933 3. Neesham D Richards A McGauran M Advances in epithelial ovarian cancer Aust J Gen Pract 2020 49 665 669 10.31128/AJGP-09-19-5098 33015682 4. Lockwood-Rayermann S Survivorship issues in ovarian cancer: a review Oncol Nurs Forum 2006 33 553 562 10.1188/06.ONF.553-562 16676012 5. Beesley VL Price MA Webb PM O'Rourke P Marquart L Australian Ovarian Cancer Study Group, Australian Ovarian Cancer Study–Quality of Life Study InvestigatorsButow PN Changes in supportive care needs after first-line treatment for ovarian cancer: identifying care priorities and risk factors for future unmet needs Psycho-Oncol 2013 22 1565 1571 10.1002/pon.3169 6. Rosen A Rodriguez-Wallberg KA Rosenzweig L Psychosocial distress in young cancer survivors Semin Oncol Nurs 2009 25 268 277 10.1016/j.soncn.2009.08.004 19879433 7. Kim S-Y Lee JR Fertility preservation option in young women with ovarian cancer Future Oncol 2016 12 1695 1698 10.2217/fon-2016-0181 27193251 8. Gordon NP Hornbrook MC Differences in access to and preferences for using patient portals and other eHealth technologies based on race, ethnicity, and age: a database and survey study of seniors in a large health plan J Med Internet Res 2016 18 e5105 10.2196/jmir.5105 9. Becker SA A study of web usability for older adults seeking online health resources ACM Trans Comput-Hum Interact 2004 11 387 406 10.1145/1035575.1035578 10. Bolle S Romijn G Smets EM Loos EF Kunneman M van Weert JC Older cancer patients’ user experiences with web-based health information tools: a think-aloud study J Med Internet Res 2016 18 e208 10.2196/jmir.5618 27457709 11. Rideout VJNT Kitchman M Brodie M E-health and the elderly: How seniors use the internet for health information: Key findings from a national survey of older Americans 2005 Menlo Park, CA Kaiser Family Foundation 12. Australian Institute of Health and Welfare Cancer in Australia 2021 2021 Canberra AIHW 13. Ovarian Cancer Australia, Healthcare Management Advisors (2017) Development of an ovarian cancer support and resources plan. Australia 14. Australian Bureau of Statistics Remoteness StructureAustralian Statistical Geography Standard (ASGS) Edition 3 2021 Canberra ABS 15. Mishra GD Kuh D Health symptoms during midlife in relation to menopausal transition: British prospective cohort study Bmj 2012 344 e402 10.1136/bmj.e402 22318435 16. Avis NE Levine B Naughton MJ Case LD Naftalis E Van Zee KJ Age-related longitudinal changes in depressive symptoms following breast cancer diagnosis and treatment Breast Cancer Res Treat 2013 139 199 206 10.1007/s10549-013-2513-2 23588951 17. Lebel S Beattie S Arès I Bielajew C Young and worried: Age and fear of recurrence in breast cancer survivors Health Psychol 2013 32 695 10.1037/a0030186 23088176 18. Cataldo JK Paul S Cooper B Skerman H Alexander K Aouizerat B Blackman V Merriman J Dunn L Ritchie C Differences in the symptom experience of older versus younger oncology outpatients: a cross-sectional study BMC Cancer 2013 13 1 16 10.1186/1471-2407-13-6 23282137 19. Ozga M Aghajanian C Myers-Virtue S McDonnell G Jhanwar S Hichenberg S Sulimanoff I A systematic review of ovarian cancer and fear of recurrence Palliat Support Care 2015 13 1771 10.1017/S1478951515000127 25728373 20. Matulonis UA Kornblith A Lee H Bryan J Gibson C Wells C Lee J Sullivan L Penson R Long-term adjustment of early-stage ovarian cancer survivors Int J Gynecol Cancer 2008 18 1183 93 10.1111/j.1525-1438.2007.01167.x 18217977 21. Wenzel LB Donnelly JP Fowler JM Habbal R Taylor TH Aziz N Cella D Resilience, reflection, and residual stress in ovarian cancer survivorship: a gynecologic oncology group study Psycho-Oncol 2002 11 142 153 10.1002/pon.567 22. Lebel S Maheu C Lefebvre M Secord S Courbasson C Singh M Jolicoeur L Benea A Harris C Fung MFK Addressing fear of cancer recurrence among women with cancer: a feasibility and preliminary outcome study J Cancer Surviv 2014 8 485 496 10.1007/s11764-014-0357-3 24756313 23. Leake RL Gurrin LC Hammond IG Quality of life in patients attending a low-risk gynaecological oncology follow-up clinic Psycho-Oncol 2001 10 428 435 10.1002/pon.539 24. Vickberg SMJ The Concerns About Recurrence Scale (CARS): a systematic measure of women's fears about the possibility of breast cancer recurrence Ann Behav Med 2003 25 16 24 10.1207/S15324796ABM2501_03 12581932 25. Anuradha S Webb PM Blomfield P Brand AH Friedlander M Leung Y ObermairA Oehler MK Quinn M Steer C Jordan SJ Survival of Australian women with invasive epithelial ovarian cancer: a population-based study Med J Aust 2014 201 283 8 10.5694/mja14.00132 25163381 26. Goss PE Ingle JN Pritchard KI Robert NJ Muss H Gralow J Gelmon K Whelan T Strasser-Weippl K Rubin S Extending aromatase-inhibitor adjuvant therapy to 10 years N Engl J Med 2016 375 209 219 10.1056/NEJMoa1604700 27264120 27. Colleoni M Sun Z Price KN Karlsson P Forbes JF Thürlimann B Gianni L Castiglione M Gelber RD Coates AS Annual hazard rates of recurrence for breast cancer during 24 years of follow-up: results from the international breast cancer study group trials I to V J Clin Oncol 2016 34 927 10.1200/JCO.2015.62.3504 26786933 28. Concin N Matias-Guiu X Vergote I Cibula D Mirza MR Marnitz S Ledermann J Bosse T Chargari C Fagotti A Fotopoulou C Martin AG Lax S Lorusso D Marth C Morice P Nout RA O'Donnell D Querleu D Raspollini MR Sehouli J Sturdza A Taylor A Westermann A Wimberger P Colombo N Planchamp F Creutzberg CL ESGO/ESTRO/ESP guidelines for the management of patients with endometrial carcinoma International Journal of Gynecologic Cancer 2021 31 12 39 10.1136/ijgc-2020-002230 29. Butow P Sharpe L Thewes B Turner J Gilchrist J Beith J Fear of cancer recurrence: a practical guide for clinicians Oncology 2018 32 32 38 29447419 30. Simard S Thewes B Humphris G Dixon M Hayden C Mireskandari S Ozakinci G Fear of cancer recurrence in adult cancer survivors: a systematic review of quantitative studies J Cancer Surviv 2013 7 300 322 10.1007/s11764-013-0272-z 23475398 31. Mutsaers B Jones G Rutkowski N Tomei C Leclair CS Petricone-Westwood D Simard S Lebel S When fear of cancer recurrence becomes a clinical issue: a qualitative analysis of features associated with clinical fear of cancer recurrence Supportive Care in Cancer 2016 24 4207 4218 10.1007/s00520-016-3248-5 27169700 32. Fardell JE Thewes B Turner J Gilchrist J Sharpe L Girgis A Butow P Fear of cancer recurrence: a theoretical review and novel cognitive processing formulation J Cancer Surviv 2016 10 663 673 10.1007/s11764-015-0512-5 26782171 33. Butow PN Bell ML Smith AB Fardell JE Thewes B Turner J Gilchrist J Beith J Girgis A Sharpe L Conquer fear: protocol of a randomised controlled trial of a psychological intervention to reduce fear of cancer recurrence BMC Cancer 2013 13 1 10 10.1186/1471-2407-13-201 23282137 34. Smith AB Bamgboje-Ayodele A Butow P Klein B Turner J Sharpe L Fardell J Beatty L Pearce A Thewes B Development and usability evaluation of an online self-management intervention for fear of cancer recurrence (iConquerFear) Psycho-Oncol 2020 29 98 106 10.1002/pon.5218 35. Tian Y Robinson JD Incidental health information use and media complementarity: A comparison of senior and non-senior cancer patients Patient Educ Couns 2008 71 340 344 10.1016/j.pec.2008.02.006 18372141 36. Gordon NP Crouch E Digital information technology use and patient preferences for internet-based health education modalities: cross-sectional survey study of middle-aged and older adults with chronic health conditions JMIR Aging 2019 2 e12243 10.2196/12243 31518291 37. Mazzocco K Masiero M Carriero MC Pravettoni G (2019) The role of emotions in cancer patients' decision making Ecancermedicalscience 2019 13 914 10.3332/ecancer.2019.914 31123497 38. Peate M Meiser B Cheah BC Saunders C Butow P Thewes B Hart R Phillips K Hickey M Friedlander M Making hard choices easier: a prospective, multicentre study to assess the efficacy of a fertility-related decision aid in young women with early-stage breast cancer Br J Cancer 2012 106 1053 1061 10.1038/bjc.2012.61 22415294 39. Woodard TL Hoffman AS Covarrubias LA Holman D Schover L Bradford A Hoffman DB Mathur A Thomas J Volk RJ The Pathways fertility preservation decision aid website for women with cancer: development and field testing J Cancer Surviv 2018 12 101 114 10.1007/s11764-017-0649-5 29034438 40. van den Berg M van der Meij E Bos AM Boshuizen MC Determann D van Eekeren RR Lok CA Schaake EE Witteveen PO Wondergem MJ Development and testing of a tailored online fertility preservation decision aid for female cancer patients Cancer Med 2021 10 1576 1588 10.1002/cam4.3711 33580749 41. ESHRE Guideline Group on Female Fertility Preservation, Anderson RA, Amant F, Braat D, D'Angelo A, Chuva de Sousa Lopes SM, Demeestere I, Dwek S, Frith L, Lambertini M, Maslin C, Moura-Ramos M, Nogueira D, Rodriguez-Wallberg K, Vermeulen N (2020) ESHRE guideline: female fertility preservation. Hum Reprod Open 2020(4):hoaa052