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BMJ Open logoLink to BMJ Open
. 2026 Feb 26;16(2):e107743. doi: 10.1136/bmjopen-2025-107743

Disparities in adverse event perception between patients and healthcare providers in gynaecologic anticancer therapy: results from an observational web-based study in Japan

Hironobu Hashimoto 1, Azusa Soejima 2, Yumiko Nishimura 3, Ami Ike 4, Michiko Sugawara 4, Muneaki Shimada 5,6, Masakazu Abe 7,✉
PMCID: PMC12958874  PMID: 41748190

Abstract

Objective

To explore patients’ perceptions of managing adverse events (AEs) from anticancer drugs for gynaecological cancer, focusing on AEs they want to avoid, views on dose adjustments and communication with healthcare professionals.

Design

Observational study using a web-based questionnaire.

Participants

Women in Japan who had received chemotherapy for endometrial or ovarian/fallopian tube cancer were enrolled. Healthcare professionals, including obstetrics and gynaecology physicians, nurses and pharmacists, who administered chemotherapy to these patients, were also enrolled.

Outcome measures

AEs that patients wished to avoid or found distressing; varied perceptions of AEs before and after treatment; discrepancies in the communication of AEs between patients and healthcare professionals; administration time and intervals between hospital visits patients found distressing; patient awareness of dose adjustment (reduction, interruption or discontinuation) to suppress AEs.

Results

Participants comprised 153 physicians, 166 nurses, 154 pharmacists and 154 patients. Nausea/vomiting (28.6%), alopecia (18.2%) and peripheral neuropathy (9.1%) were the most distressing AEs overall. Physicians rated nausea/vomiting lower (15.4%) and alopecia higher (38.2%) than patients, while pharmacists emphasised peripheral neuropathy (25.7%). Many patients found AEs, including peripheral neuropathy (53/99), fatigue (52/105) and alopecia (46/120), to be more severe than expected. Communication patterns revealed that 49.4% of patients reported all symptoms, even uncertain ones, but younger patients tended to communicate fewer symptoms. Physicians (54.2%), nurses (92.2%) and pharmacists (85.7%) preferred full disclosure of symptoms. While 28.6% of patients wished to avoid dose reductions because of fears of disease progression, 18.2% preferred dose reduction or discontinuation when AEs became intolerable. Drug administration times and visit intervals influenced patient distress. Treatment administration of over 3 hours (19.5%) and visits occurring more frequently than once every 3 weeks (27.3%) were the most distressing.

Conclusions

This study highlights discrepancies in AE perceptions and communication between patients and healthcare professionals, emphasising the need for tailored communication strategies and shared decision-making to improve cancer treatment experiences and outcomes.

Trial registration number

jRCT1040220088, Japan Registry of Clinical Trials (jRCT).

Keywords: Decision Making, Safety, Gynaecological oncology, Adverse events


STRENGTHS AND LIMITATIONS OF THIS STUDY.

  • The inclusion of both patients and healthcare professionals (physicians, nurses and pharmacists) enabled a comprehensive analysis of adverse event perceptions and communication dynamics.

  • The web-based survey facilitated access to a diverse participant pool across various treatment stages and cancer types.

  • The cross-sectional design limits the ability to assess changes in perceptions or communication over time and prevents causal inferences.

  • Because of the use of self-reported data, this study is susceptible to recall bias and subjective interpretation, which may affect the accuracy of reported experiences.

  • Web-based recruitment and use of a panel sample may not reflect the broader gynaecologic cancer or healthcare professional populations in Japan.

Introduction

Chemotherapy plays an important role in the treatment of gynaecological malignancies. For ovarian cancer, the first-line treatment is combination therapy using paclitaxel and carboplatin (ie, TC therapy).1,3 In endometrial cancer, first-line options include TC therapy and combination therapy with doxorubicin and cisplatin (ie, AP therapy).4 5 Additionally, new regimens incorporating immune checkpoint inhibitors are being explored.6,11

Managing adverse events (AEs) effectively while continuing treatment is essential for achieving optimal therapeutic outcomes. However, healthcare professionals (HCPs) often underestimate the severity of AEs reported by patients during cancer treatment, which can inadvertently result in patients enduring AE-related discomfort.12 Unmanaged AEs may compromise treatment completion, with disadvantages to treatment efficacy and affect survival outcomes. As the demand for personalised healthcare grows, the concept of patient-centred care has become increasingly relevant. Therefore, it is important to assess patients’ AE tolerance through direct communication, which allows for tailored disease management, thereby improving both chemotherapy adherence and AE control.

In Japan, specific measures are in place to manage chemotherapy-related AEs for patients receiving treatment for endometrial and ovarian cancer, including symptomatic treatment. However, little is known about patients’ perceptions of AE management. Additionally, current indicators do not account for time burden, such as the duration of medical procedures per visit.

This study aimed to investigate the perceptions and values of patients and HCPs regarding AE management in gynaecologic cancer chemotherapy, and to identify the differences in their perspectives. Another key objective was to examine the concept of ‘time toxicity’13; that is, the time burden that cancer treatment imposes on patients, which has been recognised as a treatment-related AE in previous studies.

Methods

Study design

This was a cross-sectional observational study. The target population included women living in Japan at the time of the study who had received chemotherapy for endometrial or ovarian/fallopian tube cancer. The study also targeted HCPs, including obstetrics and gynaecology physicians as well as nurses or pharmacists involved in the administration of chemotherapy for patients with gynaecological cancers.

Participants

Patients and HCPs willing to participate in this survey completed an online informed consent form. Eligibility was assessed based on responses to the online questionnaire. Patients aged ≥18 years who had received chemotherapy for endometrial or ovarian/fallopian tube cancer and were residing in Japan at the time of the study were eligible for participation. Patients who had overlapping cancers other than endometrial and ovarian/fallopian tube cancer and had close family members working for pharmaceutical companies, market research/marketing companies or HCPs were excluded from the study.

Physicians were eligible to participate in the study if they were involved in prescribing chemotherapy to treat gynaecological cancers and had ≥5 years of experience, including training. HCPs with ≥1 year of nursing or pharmacy experience could enrol if they had been involved in administering chemotherapy for gynaecological cancers.

Study endpoints

The study endpoints were as follows: AEs that patients wished to avoid or found distressing; varied perceptions of AEs before and after treatment; discrepancies in the communication of AEs between patients and HCPs; administration time and intervals between hospital visits those patients find distressing; patient awareness of dose adjustment (reduction, interruption or discontinuation) to suppress AEs.

Data collection

The data were collected via a web-based survey, which took place from 28 November to 19 December 2022. Participants were asked to complete the study questionnaire via email, managed by Medilead, Inc (Tokyo, Japan). The patient survey was conducted using a panel from Research Panel, Inc (Tokyo, Japan). In contrast, the survey for HCPs (physicians, pharmacists and nurses) was conducted using a Plamed, Inc panel (Tokyo, Japan). In this survey, emails were sent to panel members, and only those meeting the eligibility criteria could proceed to answer via an online questionnaire. Emails were distributed to a total of 230 patients, 2070 physicians, 1216 nurses and 240 pharmacists. Responses were received from 154 patients, 153 physicians, 166 nurses and 154 pharmacists. The resulting response rates were 67.0% for patients, 7.4% for physicians, 13.7% for nurses and 64.2% for pharmacists.

We used the following measures to emphasise the reliability (internal validity) of this study: use of data sources (raw data) and methods to cross-check findings; member checks of results and interpretations; and peer debriefing with colleagues who took a neutral stance. Furthermore, to ensure transferability (external validity), we provided detailed contextual information, including limitations, to enable readers to determine whether the results of this study can be applied to other situations. Additionally, to ensure reliability (reproducibility), we maintain detailed records of the decision-making process, data collection and analysis procedures.

Statistical analysis

We estimated the survey sample size based on the number of patients and HCPs who participated in the web survey panel. The target numbers were as follows: 160 patients, 140 physicians, 150 nurses and 140 pharmacists. For evaluations, percentage differences were calculated. The statistical software used in this study was R (V.4.2.0, R Foundation for Statistical Computing, Vienna, Austria). In accordance with the journal’s guidelines, we will provide our data for independent analysis by a selected team by the Editorial Team for the purposes of additional data analysis or for the reproducibility of this study in other centres if such is requested.

Patient and public involvement

The Authorized NPO Orange Tea and Women’s Cancer Patients Association: Parler provided advice on the questionnaire wording and responses to questionnaires; members of the Ovarian Cancer Survivors’ Group SMILEY provided their responses to questionnaires.

Results

Patient characteristics

Of the 154 patients with gynaecological cancer who responded to the survey, 77 had endometrial and 77 had ovarian/fallopian tube cancer. Patients had a mean (± SD) age of 52.9±9.8 years. The timing of chemotherapy was most commonly reported as within 3 years (24.7%), followed by currently undergoing treatment (19.5%), within 10 years (14.9%) and within 5 years (12.3%). A treatment history of >3 months but <1 year was reported by 63.0% of the patients. Regarding cancer therapy, 68.8% of the patients received preoperative or postoperative chemotherapy, 38.3% received combination chemotherapy after recurrence, and 15.6% received single-agent chemotherapy after recurrence (online supplemental table S1).

Among the HCPs, 153 respondents were physicians, 166 were nurses and 154 were pharmacists. Most (77.1%) physicians were male, 68.6% were affiliated with obstetrics and gynaecology departments and 23.5% were affiliated with oncology departments. Most nurses were female (88.6%), whereas most pharmacists were male (81.8%) (table 1).

Table 1. Participant characteristics (healthcare professionals).

Physician, N=153 Nurse, N=166 Pharmacist, N=154
Male, n (%) 118 (77.1) 19 (11.4) 126 (81.8)
Hospital department, n (%)
 Gynaecology /obstetrics and gynaecology 105 (68.6) – –
 Oncology 36 (23.5) – –
 Radiology/others 12 (7.9) – –
Institution, n (%)
 University hospital 45 (29.4) 43 (25.9) 35 (22.7)
 Cancer centre 9 (5.9) 11 (6.6) 8 (5.2)
 General hospital 50 (32.7) 60 (36.1) 59 (38.3)
 National hospitals/public hospitals* 37 (24.2) 49 (29.5) 52 (33.8)
 Clinic 12 (7.8) 3 (1.8) 0 (0)
Years of experience (gynaecologic cancers), %
 1–4 years – 2.4 1.3
 5–10 years 30.1 11.4 33.1
 11–20 years 30.7 55.4 59.8
 21–30 years 23.5 28.9 5.8
 >30 years 4.6 0.6 0
*

National Hospital Organization/prefectural/municipal/workers’ compensation hospitals.

Study endpoints

The AEs that patients most wished to avoid or found distressing were nausea/vomiting (28.6%), alopecia (18.2%) and peripheral neuropathy (9.1%) (figure 1). Perceptions of the most distressing AEs varied by cancer type and stage. In recurrent advanced endometrial cancer, patient distress increased for nausea/vomiting and peripheral neuropathy, but decreased for alopecia, compared with the perioperative stage. In the recurrent advanced stage of ovarian cancer, distress increased for alopecia and peripheral neuropathy but decreased for nausea/vomiting (online supplemental table S2).

Figure 1. Adverse events ranked as most distressing among patients and healthcare professionals. The figure depicts the percentage of respondents who ranked each adverse event as the most distressing. *Bone marrow suppression=red blood cells (anaemia), white blood cells (leucopenia) and platelets (thrombocytopenia). HCPs, healthcare professionals.

Figure 1

There were marked discrepancies between physician and HCP ratings compared with patient ratings. In contrast with patients, physicians appeared to underestimate nausea/vomiting (28.6% of patients, 15.4% of physicians), while all HCPs seemed to overestimate concern about alopecia (18.2% of patients, 38.2% of physicians, 37.5% of nurses, 33.1% of pharmacists). Peripheral neuropathy was rated highly by all HCP groups, especially pharmacists (9.1% of patients, 16.5% of physicians, 14.6% of nurses and 25.7% of pharmacists).

Comparison of expectations showed that the AEs that patients most commonly considered more severe than they expected were peripheral neuropathy, fatigue and alopecia. AEs that were as expected were alopecia, fatigue and anorexia. The AEs that were most commonly considered better than expected were nausea/vomiting, anorexia and nail changes (table 2). By cancer type and treatment stage, the greatest difference was in peripheral neuropathy, where most patients in the perioperative and advanced recurrence period reported that peripheral neuropathy was ‘worse than expected’ (online supplemental table S3).

Table 2. Varied perceptions of adverse events before and after treatment.

Worse than expected (responses) Same as expected (responses) Better than expected (responses)
First Peripheral neuropathy (53) Alopecia (61) Nausea/vomiting (34)
Second Fatigue (52) Fatigue (38) Anorexia (20)
Third Alopecia (46) Anorexia (36) Nail changes (16)
Fourth Myalgia/arthralgia (42) Peripheral neuropathy (29) Weight loss (15)
Fifth Nausea/vomiting (35) Myelosuppression (27) Myelosuppression (13)
Sixth Constipation (33) Constipation (22) Alopecia (13)
Seventh Dysgeusia (32) Nail changes (21) Mucositis oral (12)
Eighth Myelosuppression (28) Dysgeusia (20) Fatigue (11)
Ninth Anorexia (25) Nausea/vomiting (20) Constipation (9)
10th Nail changes (19) Mucositis oral (19) Peripheral neuropathy (9)

Patient question: for which adverse events did your perception change before and after the administration of the anticancer drug? (multiple answers)

Sorting is performed by the number of responses. The number of responses and the sort order differ because the number of respondents for each adverse event is different. The total number of patients who experienced and reported each adverse event was as follows: peripheral neuropathy: 99, fatigue: 105, alopecia: 120, myalgia/arthralgia: 63, nausea/vomiting: 91, constipation: 79, dysgeusia: 72, myelosuppression: 74, anorexia: 83, nail changes: 64, mucositis oral: 39 and weight loss: 41.

Approximately half (49.4%) of patients reported communicating all symptoms, even those they were unsure about, and 75.9% of these patients were very satisfied with their communication with their physician (figure 2A and online supplemental table S4). Younger patients (30s: 15.4%, 40s: 13.2%) were more likely to report symptoms only when asked, in contrast with older respondents (50s: 5.1%, 60s: 2.7%).

Figure 2. Discrepancies in the communication of adverse events between (A) patients and (B) healthcare professionals. In (A), 0% of patients answered, ‘No symptoms reported at all’ and ‘Other’. In (B), 0% of physicians answered ‘Others’; 0% of nurses answered, ‘I do not want you to tell me about any of the symptoms’, ‘Others’ and ‘I don't know’; and 0% of pharmacists answered, ‘Only the symptoms they ask for’, ‘No symptoms reported at all’, ‘Others’ and ‘I don't know’. HCPs, healthcare professionals.

Figure 2

Overall, all HCPs tended to desire full disclosure of AEs. Most nurses (92.2%) and pharmacists (85.7%) responded that all AEs should be reported, including uncertain symptoms (online supplemental table S5). While physicians showed a slightly lower preference (54.2%) for complete disclosure, the data also revealed a gender dynamic: 0% of female physicians indicated that they only wanted to be informed about specific symptoms, compared with 5.9% of male physicians. This gender-based preference for full disclosure of symptoms was also observed among female nurses (94.6% vs 73.7% for male nurses) and female pharmacists (96.4% vs 83.3% for male pharmacists). 

Regarding patients’ perceptions of drug administration time, 19.5% found that treatment administration of over 3 hours was distressing, whereas 19.5% indicated they did not particularly mind this duration of drug administration (figure 3A). Hospital visits occurring ‘more than once every 3 weeks’ were perceived as distressing by most patients (figure 3B).

Figure 3. Patients’ perception of distress related to (A) drug administration time and (B) interval between hospital visits.

Figure 3

Patients’ impressions of dose adjustment based on the occurrence of AEs varied, with many (28.6%) patients wishing to avoid dose reductions, interruptions or discontinuations due to concerns about relapse or exacerbation. Conversely, 18.2% of patients wanted to reduce the dose, interrupt drug administration or discontinue the drug as soon as the AE became difficult to bear (online supplemental figure S1). In addition, 15.6% of patients responded that ‘reduction is fine but interruption is unsettling’, and 7.8% responded that ‘reduction is fine but discontinuation is unsettling’, with some patients expressing concern about periods when they were not receiving treatment. Compared with the perioperative period, the proportion of patients who expressed concern about treatment discontinuation during the advanced recurrence period increased by more than 10%.

Discussion

This survey of patients and HCPs in Japan revealed discrepancies in perceptions of managing AEs associated with gynaecological cancer treatment. Patients identified nausea/vomiting, alopecia and peripheral neuropathy as the most distressing AEs, with differences across gynaecological cancer types and treatment stages. Physicians tended to rate nausea/vomiting as less and alopecia as more significant compared with patients, while pharmacists placed greater emphasis on peripheral neuropathy. Approximately 76% of patients reported disclosing all their AEs and were very satisfied with the communication. HCPs, including physicians, nurses and pharmacists, expressed a strong preference for full disclosure of symptoms. Long administration times and more frequent visits were particularly burdensome. Some patients wanted to avoid dose reductions because of fears of disease progression, while others favoured dose adjustments when AEs became difficult to tolerate. Although this study required ≥5 years of experience for participation of physicians compared with ≥1 year for nurses and pharmacists, only 2.4% of nurses and 1.3% of pharmacists had ≤4 years of experience. Therefore, the impact of responses from less experienced HCPs is considered minimal. Additionally, this study targeted patients with prior chemotherapy experience, and patients were slightly younger than the overall population with endometrial and ovarian cancer in Japan.

A strength of this study was the inclusion of both patients and HCPs across different cancer types and treatment stages, providing broad insights into AE perceptions. The web-based design allowed efficient data collection across diverse participants, communication discrepancies and treatment experiences. We increased the value of our research by integrating patients’ experiences and opinions into the patient-reported outcomes, specifically by involving patients in questionnaire review and inviting survey participation via patient societies. However, several limitations should be noted. The cross-sectional design of the survey may lead to selection bias and the absence of longitudinal follow-up, limiting the ability to draw conclusions about causality. Additionally, the web-based and panel recruitment methods could have excluded less computer-literate populations, thus affecting generalisability. Another limitation is the ambiguity in the questionnaire design: quantitative data (eg, via Likert scales) were not collected, key aspects of distress (physical, psychological, practical) were not distinguished, and two different concepts—side effects that occurred and those that participants wished to avoid—were combined into one item. Future studies should address these issues to better capture patient perspectives. Moreover, as this study relied on patient-reported outcomes and time had elapsed since treatment completion, recall bias cannot be ruled out. Finally, the scope of the survey was restricted to physicians, nurses and pharmacists, which limited the interpretation of the results by excluding other relevant roles.

In the context of the existing literature, these findings both align with and diverge from prior reports on AE perception in cancer care. Previous studies have shown that alopecia, fatigue, peripheral sensory neuropathy and nausea/vomiting are among the most frequent and distressing AEs with TC and AP therapies.14,17 Physicians often underestimate the impact of nausea and vomiting.18 Still, effective support from HCPs may have alleviated the perceived distress associated with nausea and vomiting. This may also indicate that this adverse effect is manageable with medications, as outlined in antiemetic guidelines.19,21 Alopecia substantially affects patients’ psychological well-being, quality of life and body image. Such changes in appearance can impact social activities.22 However, HCPs in this survey seemed to overestimate the extent to which patients wanted to avoid alopecia, while many patients found it to be as expected because they received thorough pretreatment explanations, which likely increased patient awareness of the condition. Peripheral neuropathy was another AE that patients wanted to avoid or found more distressing than expected, which was also recognised by HCPs. This aligns with prior studies linking platinum-based and taxane-based regimens to long-term, dose-dependent neuropathic effects that can significantly impair quality of life.23,26 Previous reports mentioned self-monitoring27 and pharmacist-led interventions28 as effective in maintaining quality of life and managing AEs, including nausea, vomiting and peripheral neuropathy, but our findings suggest that such strategies are underused. Pharmacist interventions are increasingly recognised as a standard and integral practice in managing AEs related to cancer chemotherapy.29,32

The present results highlight the importance of effective patient-centred communication strategies between patients and HCPs. Patients who were most satisfied with their communication with physicians were those who openly communicated all their symptoms, suggesting that open dialogue improves the treatment experience. Barriers to communication in Japan may have been age-related communication styles, HCP gender dynamics, issues related to physician shortages, particularly obstetricians and gynaecologists,33 and the short duration of follow-up visits.34 Survey responses indicating ‘I want all information communicated’ (option 1) were more frequently reported by female HCPs across all groups (online supplemental table S5). Previous reports indicate that female HCPs tend to engage in more patient-centred communication than their male counterparts.35 Taken together, these findings suggest that female HCPs may adopt a more open and patient-centred communication style. The finding that some patients feared dose reductions because of concerns about disease progression, while others welcomed dose reductions to improve tolerability, highlights the need for empathetic communication regarding treatment planning.36 37 Furthermore, when unsure about drug choices, considering administration times and hospital visit intervals might promote patient satisfaction and quality of life.38 39 Discrepancies in AE recognition and communication among HCPs based on sex and role highlight the need for tailored communication strategies that align with each group’s perspective. Clinicians and policymakers should consider structured communication training for HCPs and workflow adjustments that allow more time for dialogue. For example, in Japanese guidelines, it is important to include information on the prevention and countermeasures for side effects, but appealing for structural systems in medical facilities for the early detection of side effects may also be beneficial for improving the quality of life of patients.

Conclusions

This study found discrepancies in AE perceptions and communication between patients and HCPs. Tailored communication strategies and shared decision-making could improve cancer treatment experiences and outcomes. Several questions remained unanswered, which should be addressed by longitudinal studies focusing on exploring how AE perceptions evolve over time and how they influence treatment adherence and outcomes. Future work could also explore the development of structured communication training for HCPs, patient-centred models and pharmacist-led interventions for improving AE management and patient quality of life throughout treatment. In the future, it will be necessary to examine whether tailored communication can reduce the gap in AE recognition between patients and HCPs and whether it impacts treatment efficacy and quality of life.

Supplementary material

online supplemental file 1
bmjopen-16-2-s001.docx (141KB, docx)
DOI: 10.1136/bmjopen-2025-107743

Acknowledgements

The authors wish to thank the Authorized NPO Orange Tea and Women’s Cancer Patients Association: Parler for their advice on the questionnaire wording and their responses to the questionnaire; members of the Ovarian Cancer Survivors’ Group SMILEY for their responses to questionnaires; and Dr Tetsuhiro Niidome (Eisai Co., Ltd.) for his help as a publication coordinator. The authors also wish to thank Keyra Martinez Dunn, MD, of Edanz (www.edanz.com), for providing medical writing support, funded by Eisai Co., Ltd., following Good Publication Practice guidelines (http://www.ismpp.org/gpp-2022).

Footnotes

Funding: This work was supported by Eisai Co., Ltd. Ami Ike and Michiko Sugawara are affiliated with Eisai Co., Ltd., and they contributed as listed in the Contributors section. Despite their affiliation with the funder, the funder did not influence the results/outcomes of the study.

Prepublication history and additional supplemental material for this paper are available online. To view these files, please visit the journal online (https://doi.org/10.1136/bmjopen-2025-107743).

Provenance and peer review: Not commissioned; externally peer-reviewed.

Patient consent for publication: Not applicable.

Ethics approval: This study involves human participants and was approved by the Research Ethics Committee of the Japan Association for the Promotion of Medical Research and Development. Reception number: 41, Approval date: 19 October 2022. Participants gave informed consent to participate in the study before taking part.

Data availability free text: The datasets generated during and/or analysed during the current study are not publicly available but are available from the corresponding author on reasonable request.

Patient and public involvement: Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.

Data availability statement

Data are available upon reasonable request.

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Associated Data

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    Supplementary Materials

    online supplemental file 1
    bmjopen-16-2-s001.docx (141KB, docx)
    DOI: 10.1136/bmjopen-2025-107743

    Data Availability Statement

    Data are available upon reasonable request.


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