How Patient-Centered is Education and Counseling of Patients on Oral Anticancer Therapy? A Multicenter Cross-sectional study

Abstract

Background: In the last years, there has been an exponential increase in the number of oral anticancer therapies (OACT). However, no research has yet been conducted on the current quality of patient-centered care (PCC) for patients on OACT in Belgium. Moreover, there was no valid and reliable instrument available to assess PCC tailored to the context of OACT. Therefore, we developed and validated a new patient-reported experience measure (PREM), named the CONTACT-Patient-Centered Care Questionnaire (CONTACT-PCCQ).
 Aim: The aim of this study was to gain insight in the quality of PCC for patients on OACT using the CONTACT-PCCQ. It was examined which areas of patient-centered education and counseling are currently being performed adequately, according to patients, and which areas require improvement.
 Methods: This was a multicenter cross-sectional study. Patients were recruited in 11 hospitals in Belgium. They completed the CONTACT-PCCQ online or on paper. The CONTACT-PCCQ consists of 86 items, which all represent a key element (KE) in patient-centered education and counseling for patients on OACT. The items are divided into seven subscales: A1) medication counselling at the start of OACT, A2) follow-up of OACT, B) communication style, C) counseling by hospital treatment team, D) counseling by primary care healthcare professionals, E) psychosocial support, and F) involvement of family and friends. Patients were asked to indicate how they experienced the performance of each KE on a 5-point Likert rating scale. The answer options were dichotomized into ‘performed’ and ‘not performed’. Subsequently, the degree of performance of each item was defined by calculating the proportion of patients that indicated that the item was performed. On subscale-level, mean total scores were calculated.
 Findings: In total, 266 patients completed the CONTACT-PCCQ. Subscale C ‘Commitment and cooperation between healthcare professionals’, concerning care coordination in the hospital, had the highest mean subscale score. The lowest score was obtained on subscale D ‘Involvement of primary care’. The degree of performance of all items ranged from 22% to 95%. Items regarding specific topics in patient education (e.g., what do to in case of vomiting, which food to avoid during treatment) and adherence monitoring scored low. Low scores were also obtained on the items about the involvement of the community pharmacist and homecare nurse - in contrast to the items regarding the general practitioner. Some other items, e.g., regarding information about vaccinations and palliative care, were also scored low by patients. In general, KEs on communication style (e.g. HCPs left enough opportunity to ask questions, HCPs took sufficient time for a proper conversation) received high scores.
 Discussion and conclusion: This study gave insight in the overall quality of patient-centered education and counselling for patients on OACT. Three gaps in PCC were uncovered: unmet patient information needs due to shortcomings in patient education, inadequate adherence monitoring, and lacking collaboration with community pharmacists and home care nurses. These results enable hospitals and policy makers to set priorities in care quality improvement for patients on OACT.