Expression III: patients’ expectations and preferences regarding physician–patient relationship and clinical management—results of the international NOGGO/ENGOT-ov4-GCIG study in 1830 ovarian cancer patients from European countries

Oskay-Özcelik, Gülten; Alavi, Seyed Ali; Richter, Rolf; Keller, Maren; Chekerov, Radoslav; Cecere, Sabrina Chiara; Cormio, Gennaro; Joly, Florence; Kurtz, Jean Emmanuel; Bois, Andreas du; Maciejewski, Michal; Jędryka, Marcin; Vergote, Ignace; Nieuwenhuysen, Els Van; Casado, Antonio; Mendiola, C.; Achimaș-Cădariu, Patriciu; Vlad, Cătălin; Reimer, Daniel; Zeimet, Alain G.; Friedlander, Michael; Sehouli, Jalid

doi:10.1093/annonc/mdy037

Cited by 24 publications

(26 citation statements)

References 24 publications

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“…Younger patients in our study had higher expectations of full recovery. Concordant with the results of our European Expression III survey, including 1830 patients with primary and relapsed ovarian cancer, a significant number of patients expected complete response from maintenance therapy, even patients with recurrent disease 11. These results show that there is still a gap between the efficacy of maintenance therapy and patients' expectations.…”

Section: Discussionsupporting

confidence: 82%

“…In an interdisciplinary workshop with gynecologists, oncologists, statisticians, psychologists, nurses, and representatives of self-help organizations, the survey was implemented. Different studies on the topic were used as a basis for discussion and the questionnaire 11 12. The questions were answered as multiple choice, free text, or on a scale of 1–10.…”

Section: Methodsmentioning

confidence: 99%

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Expectations and preferences of patients with primary and relapsed ovarian cancer to maintenance therapy: A NOGGO/ENGOT-ov22 and GCIG survey (Expression IV)

Rohr

Alavi

Richter

et al. 2020

Int J Gynecol Cancer

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BackgroundMaintenance therapy induces remission and prolongs disease free interval in primary and recurrent ovarian disease. For the treatment decision making process, aspects of quality of life and patients′ preferences are crucial, despite the fact that scientific data are lacking. Therefore, we conducted this European-wide study in patients with ovarian cancer.MethodsA 25 item questionnaire was provided to ovarian cancer patients via the internet or as a paper version in 10 European countries (Austria, Belgium, France, Germany, Italy, Romania, Slovenia, Finland, Turkey, and Spain). Data recorded were demographics, tumor stage, therapy after firstline and recurrent disease, preferences for administration, and expectations concerning maintenance therapy.ResultsOverall, 1954 patients participated from September 2013 to March 2016; 42% had recurrent disease. Most patients (98%) with primary epithelial ovarian cancer underwent surgery followed by chemotherapy (91%). Almost one-third of participants (29%) were receiving maintenance therapy whereas 45% had only heard of it. For 70% of patients with primary epithelial ovarian cancer, they heard about maintenance therapy from their doctor, 10% heard about maintenance therapy from other patients, and 8% from the internet. The main source of information about maintenance therapy in patients with epithelial ovarian cancer relapse was from the treating physician (72%), from other patients (8%), and from the internet (7%). For patients undergoing maintenance therapy, the four most disturbing adverse effects were polyneuropathy (37%), nausea (36%), hair loss (34%), and vomiting (34%). The main objective of maintenance treatment, as perceived by patients, was to increase the chances of cure (73%), improvement in quality of life (47%), and delay in tumor growth (37%). Many patients were willing to undergo maintenance therapy until tumor progression (38%) and 39% would prefer oral administration. No significant differences were detected in the cross country subanalysis regarding expectations of maintenance therapy and patients with primary or relapsed ovarian cancer.ConclusionPatients with ovarian cancer were willing to accept maintenance therapy of prolonged duration and preferred oral administration. There is still a gap between the efficacy of maintenance therapy and patient expectations. Patients need more information on the adverse effects and treatment goals of maintenance therapy to avoid misunderstandings.

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Section: Discussionsupporting

confidence: 82%

Section: Methodsmentioning

confidence: 99%

Expectations and preferences of patients with primary and relapsed ovarian cancer to maintenance therapy: A NOGGO/ENGOT-ov22 and GCIG survey (Expression IV)

Rohr

Alavi

Richter

et al. 2020

Int J Gynecol Cancer

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“…A number of published cross-national research focus on a specific type of cancer. Two most recent and comprehensive studies in this area, The ‘Every Woman’ study supported by the World Ovarian Cancer Coalition completed a study in 2018 by surveying 1531 women in 44 countries, and incorporated attitudes and practices in its scope;11 and Expression III: patients’ expectations and preferences regarding the physician–patient relationship and clinical management6 also reports data from 1830 patients in European countries, and both look at only ovarian cancer patients. Therefore, even though they provide an important comparison for ovarian cancer patient data, the scope of this survey extends beyond their focus covering all gynecological cancers.…”

Section: Discussionmentioning

confidence: 99%

“…Yet we found that only an average of 31.1% of patients received any printed materials from their healthcare providers. Cancer patients have high levels of unmet needs and prefer receiving more information and support for their disease6 20 21 with a strong preference in being involved in the decision-making process of their treatments 22–24. This can only be efficient by a matching increase in support and educational services.…”

Section: Discussionmentioning

confidence: 99%

“…Gynecological cancers have a significant impact on the reproductive and sexual health of affected patients 4 5. During the treatment journey, not just medical care, but also adequate supportive care including good communication with healthcare professionals,6 networking with other patients and having access to valuable information in printed and video materials,7 and support by patient advocacy groups,8 all have been shown to contribute in reducing the levels of stress and anxiety experienced by patients.…”

Section: Introductionmentioning

confidence: 99%

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Perceptions, expectations, and experiences of gynecological cancer patients: a pan-European ESGO-ENGAGe survey

Urkmez

Andac-Jones

Cibula

et al. 2019

Int J Gynecol Cancer

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Patient involvement in research within the Gynecological Cancer InterGroup: A call to action for a systematic approach: Results from a survey

Nohová,

Andrews,

Votan

et al. 2023

Health Science Reports

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Background and AimsInvolving patients in research, not only as trial subjects, is not a newly established practice. Over the last two decades, patient roles have gradually expanded to become active research contributors, creating a more patient‐centered research landscape. Our survey has explored the scope of patient involvement within the Gynecologic Cancer InterGroup (GCIG), an International Gynecologic Cancer Research Consortium, and identified challenges in developing a systematic, meaningful and sustainable level of patient involvement.MethodsIn late 2019, the GCIG Harmonisation Operations Committee conducted an online survey across 26 national and/or international research cooperative groups, aiming to identify current patient involvement practices implemented by each group. Twelve questions were asked. The results have been generated to support a systematic strategic planning process to increase patient involvement into clinical research projects.ResultsMore than half of the 26 participating groups have either already involved (15, [58%]) or are planning (6, [23%]) to involve patients in their research activities. Gaining patient support in raising public awareness around clinical trials appears to be one of the most desired benefits (21, [81%]). Ten respondents managed to integrate patient involvement into their standard practice. When involving patients in research the groups mostly consider that patients bring added value to the study (19, [73%]), although only eight groups (40%) have a well‐organized process in doing so.ConclusionEven though patient involvement is considered a significant added value to clinical research, its application within GCIG groups is not considered on a regular basis and is predominantly limited to operational aspects of research activities. The lack of resources and expertize, as well as the missing well‐organized and structured process of some groups, combined with their ability to ensure process sustainability, are among the main factors affecting implementation and adoption of patient involvement within GCIG research activities.

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Expression III: patients’ expectations and preferences regarding physician–patient relationship and clinical management—results of the international NOGGO/ENGOT-ov4-GCIG study in 1830 ovarian cancer patients from European countries

Cited by 24 publications

References 24 publications

Expectations and preferences of patients with primary and relapsed ovarian cancer to maintenance therapy: A NOGGO/ENGOT-ov22 and GCIG survey (Expression IV)

Expectations and preferences of patients with primary and relapsed ovarian cancer to maintenance therapy: A NOGGO/ENGOT-ov22 and GCIG survey (Expression IV)

Perceptions, expectations, and experiences of gynecological cancer patients: a pan-European ESGO-ENGAGe survey

Patient involvement in research within the Gynecological Cancer InterGroup: A call to action for a systematic approach: Results from a survey

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