ABSTRACT
OBJECTIVE: Cancer patients and their family caregivers have reported various needs that are not met. Recognition of the unmet needs by healthcare professionals may be a first step to adequately and systematically addressing them. Thus, the International Psycho-Oncology Society Survivorship Online Survey was developed to measure healthcare professionals' evaluation about the unmet needs of their patients and family caregivers around the globe. METHODS: The survey was developed in English and translated to additional 14 different languages. The survey was distributed on the web-based REDCap application to over 50 psycho-oncology societies and their networking platforms as well as social media and to authors who have published in psycho-oncology journals globally. RESULTS: A total of 1472 participants from 36 countries at least partially completed the survey. Healthcare professionals evaluated needs for managing one's emotional distress and patients' medical care and symptoms as the most common concerns for both patients and their family caregivers across all patient age groups. Less than two-thirds of the participating healthcare professionals reported that their institution had services or programs to address the needs of the patients or caregivers. CONCLUSIONS: Findings suggest several directions for further analyses to provide more specific information that would be readily translated into clinical practices, research, and policy aimed to enhance the quality of life of cancer patients, survivors, and family caregivers around the globe. In addition, this collaborative effort also hints at the importance of establishing international networks to promote equity in care for people touched by cancer worldwide.
Subject(s)
Cancer Survivors , Neoplasms , Humans , Caregivers/psychology , Cancer Survivors/psychology , Quality of Life/psychology , Neoplasms/psychology , Health Services Needs and DemandABSTRACT
The European Organization for Research and Treatment of Cancer colorectal cancer (CRC)-specific quality-of-life questionnaire module (QLQ-CR38) assesses health-related quality of life in patients with CRC. We studied its psychometric properties and clinical validity in Hong Kong Chinese patients with CRC. The 38 items, forming functional and symptom scales, were administered to 256 Chinese patients diagnosed with CRC from a clinical oncology outpatient unit. Multitrait scaling analyses confirmed the hypothesized scale structure of the functional scales but not of the symptom scales, particularly those measuring chemotherapy side effects and gastrointestinal symptoms. The functional scales, but not the symptom scales, showed good internal consistency reliability. Convergent and divergent validity were satisfactory, as indicated by the correlations with other measures. The scales effectively differentiated between clinically distinct patient groups. As expected from a module designed to be used in conjunction with the core questionnaire, correlations between the QLQ-CR38 and the QLQ-30 are only weak to moderate. The functional scales of the Chinese version of the QLQ-CR38 show good psychometric performance and suitability for use with the QLQ-C30. Although, the results lend support to the clinical validity of the QLQ-C38, the symptom scales would benefit from further refinement to enhance their usefulness.
