Background: Since Taiwan launched the Cancer Prevention Act in 2003, several prevention strategies and early detection programs have been implemented to reduce the incidence, morbidity and mortality rates of cancer. However, most of the programs have concentrated on healthcare providers. Evaluations from the patient's perspective have been lacking. Thus, in this study a cancer patient experience questionnaire was developed in the Taiwanese context and a preliminary nationwide investigation was conducted on the status of cancer care from the patient's perspective. Methods: An extensive literature review was first conducted to collect information on the existing instruments used to measure the cancer patient's experience. Thereafter, a multidisciplinary expert panel was convened to select an optimal instrument based on the IOM's six domains for evaluating patient-centered care. The European Organisation for Research and Treatment of Cancer (EORTC) translation procedure was applied to the questionnaire for cross-cultural adaptation. A nationwide field test was then implemented at certificated cancer care hospitals. Results: Fifteen questionnaires were collected for the literature review. The expert panel selected the National Cancer Patient Experience Survey based on the IOM's recommendations. After cross-cultural translation of the questionnaire, a total of 4000 questionnaires were administered in 19 certificated cancer care hospitals and two major cancer patient associations, with 1010 being returned (25.25% response rate). Most of the respondents were middle-aged, and 70% were female. The respondents reported they had a good experience with cancer care, except for "Home care and support" and "Finding out what was wrong with you". Stratified analysis was conducted, with the results showing that the cancer patients' experiences varied depending on their sociodemographic and cancer-related characteristics. Conclusions: A Taiwanese version of the cancer patient experience survey questionnaire was developed. Its results showed that the cancer patient's experiences varied, depending on the patient's age, cancer type, and cancer history. This study can be used as a basis to establish a patient-centered care model for cancer care in Taiwan.
Keywords: cancer patient experience; questionnaire development; survey.