Journal of Patient-Reported Outcomes

Quality of life and climacteric symptoms in women with endometrial cancer: examining the impact of lower limb lymphedema

Abstract Background Women undergoing treatment for endometrial cancer (EC) often experience climacteric-like symptoms, and some may develop lower limb lymphedema (LLL). LLL can significantly impact women’s quality of life (QoL) and exacerbate climacteric symptoms. In this study, we investigated the prevalence of LLL and explored the differences in climacteric symptoms and QoL between women with and without LLL. Methods A cross-sectional, observational, and comparative study design was employed. Clinical data for 105 women diagnosed with EC were gathered, encompassing demographic details, LLL, climacteric symptoms, and QoL. Instruments used included a demographic-disease survey, the Gynecological Cancer Lymphedema Questionnaire, the Greene Climacteric Scale, and EORTC QLQ-C30 and QLQ-EN24 questionnaires. Descriptive statistics and independent-sample t-tests were utilized for data analysis. Results In this study, 39% of women with EC experienced LLL, with primary symptoms being aching, heaviness, and swelling. Women with LLL also had significantly more severe climacteric symptoms, including anxiety, depression, and vasomotor issues, and they reported poorer physical, role, emotional, cognitive, and social functioning. Additionally, they faced increased fatigue, pain, dyspnea, and more severe specific symptoms like lymphedema, urological and gastrointestinal issues, body image concerns, back/pelvic pain, and hair loss compared to those without LLL. Conclusion The findings of this study enhance understanding of the impact of LLL on climacteric symptoms and QoL in women with EC. Health-care professionals, when advising treatment for EC, should inform women about the likelihood of LLL and assist in early management of its symptoms during and after EC treatment.

Patient willingness to pay and preference for cervical cancer treatments among middle- and low-income populations in Xinjiang

Abstract Background Cervical cancer remains a significant public health issue in underdeveloped regions like Xinjiang, Western China, where health literacy is low and economic disparities are prominent. While previous studies have focused on preventive measures, there is limited research on the willingness to pay (WTP) for cervical cancer treatments. This study aimed to assess patient preferences and WTP from patient perspective for quality of life improvement, unadjusted life-year extension, and targeted and immunotherapy drugs among cervical cancer patients in Xinjiang. Methods A face-to-face survey was conducted using the Contingent Valuation Method (CVM) and Discrete Choice Experiment (DCE) to evaluate WTP for cervical cancer treatments. The CVM assessed patients’ WTP for two scenarios: living in perfect health for 5 or 10 years versus unadjusted life-year extension for the same durations. Health related quality of life (HRQoL) was measured using both the EQ-5D-5 L and EQ-VAS instruments. The DCE evaluated patients’ preferences and WTP for targeted therapy and immunotherapy drugs. Results This study included 106 valid questionnaires (response rate 96.4%), primarily comprising stage III cervical cancer patients (EQ-5D-5 L 0.89, EQ-VAS 0.80) with characteristics of low income and educational attainment. Key findings revealed: (1) Patients prioritized quality of life improvement over lifespan extension, with WTP/QALY in the 10-year perfect health scenario exceeding Xinjiang’s 2024 per capita disposable income threshold while other scenarios remained below this value, and WTP/QALY being significantly higher in the 10-year scenario compared to the 5-year scenario; (2) Medication preference analysis demonstrated that quality of life improvement, cost, and incidence of adverse reactions were key decision-making factors, whereas survival extension held relatively lower importance. WTP valuations exhibited significant attribute-specific variations, with the highest WTP corresponding to quality of life improvement attributes and the lowest to survival extension attributes. Conclusions Cervical cancer patients in Xinjiang prioritize quality of life improvement over lifespan extension, with their preferences and WTP being influenced by treatment-related factors, disease characteristics, and socioeconomic background. Therefore, when formulating reimbursement policies and resource allocation strategies, priority should be given to interventions that can significantly improve quality of life, while implementing differentiated support policies for patient populations with varying socioeconomic statuses.

A multi-method approach to selecting PRO-CTCAE symptoms for patient-reported outcome in women with endometrial or ovarian cancer undergoing chemotherapy

Abstract Background Women with endometrial or ovarian cancer experience a variety of symptoms during chemotherapy. Patient-Reported outcomes (PROs) can provide insight into the symptoms they experience. A PRO tool tailored to this patient population can help accurately monitor adverse events and manage symptoms. The objective of this study was to identify items in the National Cancer Institute’s measurement system Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE®) appropriate for use in a PRO tool for a population of women with endometrial or ovarian cancer undergoing treatment with taxanes (paclitaxel or docetaxel) in combination with carboplatin. Methods A two-phase, sequential multi-methods approach was applied. In phase one, a comprehensive literature search was done to map the toxicity of the applied chemotherapeutics and phase III clinical studies. Phase two, which comprised selecting the PRO-CTCAE items, included discussions with and feedback from a patient advisory board, an additional literature search, and focus group interviews with senior oncologists and specialized oncology nurses. A national expert panel facilitated both phases in terms of carefully select items from the PRO-CTCAE library. Results Phase one identified 18 symptoms and phase two, three additional ones, leading to the inclusion of 21 PRO-CTCAE symptoms in the final PRO tool. Since PRO-CTCAE also contains one to three sub-questions on the frequency, severity, and interference with daily activities of symptoms, there were 44 potential items. Conclusions This study describes taking a multi-method approach to selecting items from the PRO-CTCAE library for use in a population of women with endometrial or ovarian cancer undergoing chemotherapy. By systematically combining diverse approaches, we carefully selected 21 clinically relevant symptoms covered by 44 items in the PRO-CTCAE library. Future studies should investigate the psychometric properties of this PRO tool for women with endometrial or ovarian cancer.