Assessment of cancer patients' quality of life and psychosocial care needs. A plea for more integrated and patient-centered care.

Abstract

Summary In the report ‘Crossing the quality chasm: a new health system for the 21st century’, the Institute Of Medicine (IOM) suggested that patient-centeredness one of the critical components in the pursuit of high-quality care. The IOM stated that ‘care should be respectful of and responsive to patients’ experiences, values, preferences and needs, and patients’ input on these should guide all clinical decisions’. When confronted with cancer and related treatments, patients and their relatives can experience consequences of physical, psychological, social and practical nature. Due to earlier detection and successful therapeutic approaches more and more patients survive or live longer with cancer, and with the related long-term and late-effects. To adequately address the impact of cancer, cancer care should be comprehensive, integrating the medical and the psychosocial approach during active treatment, as well as in follow-up. The objective of this PhD-project was to contribute to the research on the psychosocial aspects and patient-centeredness in Belgian cancer care. This gave rise to several studies. First, we conducted a quantitative study with 192 cancer patients to study the psychometric robustness of the Flemish Cancer Rehabilitation Evaluation System (CARES), a questionnaire for the assessment of cancer patients’ quality of life (QOL) and care needs. From the psychometric analyses focused on the items, the subscales and comparisons with other tools, we could conclude that the Flemish CARES is a reliable and valid tool. In other words, it is consistent or stable in its measurement, and it measures what it is supposed to measure, namely QOL and care needs. In the same period, four focus groups (FG) with 26 (ex-)patients were conducted to explore the relevance and completeness of the content, as well as the acceptability and feasibility of the instrument. The results of these FG supported the cross-cultural content validity and feasibility of the Flemish CARES version. Besides, these FG gave insights in patients’ experiences with cancer care, and the match of the care offer with their care needs. Interpersonal and organizational aspects seem to play an important role in the establishment of the (mis)match between cancer care and cancer patients’ care needs. In a third study, we recruited a multidisciplinary group of healthcare professionals (HCP) working in the in-hospital and ambulatory care context. In an online survey, their perspective on the approach of psychosocial issues in cancer care was explored. The survey revealed that only half of the participants was satisfied with the support or care they provide when cancer patients suffer from psychosocial problems or care needs. In general psychosocial issues are not systematically addressed. The barriers that need to be addressed according to the HCP are mainly related to education, communication, healthcare policy and organization. For the Cochrane Review conducted within this project, we searched for studies focusing on the effect of systematic screening and assessment of cancer patients’ psychosocial well-being and care needs. Twenty four studies could be included. The evidence found did not support the overall effectiveness of the screening intervention, neither did it bring clarity on the intervention characteristics that could be determinative in the effectiveness of the intervention. The last study conducted within this PhD-project was an exploratory pilot study. In two different gastroenterology departments, a systematic CARES-assessment was applied in the care process of 51 patients with a digestive cancer. At the start of treatment, three, six and twelve months later the CARES was used to assess their QOL and care needs, and a summary report was sent to the reference nurse for use in care and follow-up. Both patients and reference nurses had positive experiences with the systematic CARES-assessment in daily routine. The tool provided a broad insight on the well-being and care needs of patients, facilitated patient-HCP communication, and efficient referral. The findings from this PhD-project are a plea for further efforts in clinical practice and research, focused on patient-centeredness and the biopsychosocial approach of patients’ well-being. In these, there should be an emphasis on the importance of ‘making connections’: connections between cancer patients’ needs and cancer care, connections between involved HCP, connections between care contexts and care phases.