The impact of a patient-centred care pathway for patients treated with oral anticancer drugs: A multicentre pre-posttest study in Flanders.

RATIONALE: In the Collaborative Network To Take Responsibility for Oral Anticancer Therapy (CONTACT) project, an evidence-based and patient-centred care(PCC) pathway was implemented in 12 oncology departments in Flanders. The care pathway was developed in cocreation by an interdisciplinary project team, and tailored to the local hospital context. AIMS AND OBJECTIVES: In this study, the impact of the care pathways on quality of PCC and other patient outcomes was investigated. METHOD: A pre-posttest study was performed in nine of the participating oncology departments. The primary outcome was quality of PCC. Furthermore, level of patient self-management, medication adherence, satisfaction with information about the oral anticancer drug and quality of life were measured as secondary outcomes. Linear mixed models were used to investigate differences in outcomes between the pre- and posttest group. RESULTS: Quality of PCC, as well as all secondary outcomes improved after implementation of the care pathway. However, the changes in pre- and posttest scores were not significant. The overall quality of PCC increased from 3.72 to 3.88, measured on a five-point Likert scale (p = 0.124). CONCLUSION: This study showed small, however, no significant improvements in the quality of PCC and other patient outcomes. The lack of significant changes can be attributed to the complexity of the care pathway development, poor or unstable implementation of the care pathway and limited changes in follow-up care. More insight in the actual implementation of the care pathway and potential contextual factors influencing its effect is needed to help understand the outcomes of this pre-posttest study.

How patient-centered is education and counseling of patients treated with oral anticancer drugs? A multicenter cross-sectional study.

OBJECTIVE: In this multicenter cross-sectional study, the quality of patient-centered education and counseling for patients treated with oral anticancer drugs was examined. METHODS: The CONTACT-Patient-Centered Care Questionnaire was administered to 266 patients, recruited in 11 Flemish hospitals. The questionnaire consists of 80 items, each evaluating the degree of performance of a key element in patient-centered education and counseling. RESULTS: In total, 15 key elements were seriously underperformed (degree of performance < 50%). Elements regarding adherence monitoring, specific topics in patient education, and involvement of the community pharmacist and home care nurse received a very low score. Only six key elements were systematically performed (degree of performance ≥ 90%), among which the elements on communication style and involvement of the general practitioner. CONCLUSION: This study uncovered three major gaps in patient-centered education and counseling of patients on oral anticancer drugs: unmet patient information needs due to shortcomings in patient education, inadequate adherence monitoring, and lacking collaboration with community pharmacists and home care nurses. PRACTICE IMPLICATIONS: This study highlights the need for interdisciplinary and patient-centered education and counseling of patients using OACD, including all key stakeholders: physicians, nurses, hospital pharmacists, general practitioners, community pharmacist and home care nurses.

A self-directed co-creation process for developing a care pathway for patients on oral anticancer therapy: A qualitative process evaluation.

PURPOSE: To provide in-depth insight in stakeholders' experiences with the self-directed co-creation of a care pathway for patients treated with oral anticancer drugs, and to identify influencing factors for the success of the co-creation process that are persistent throughout the prior pilot phase and the scale-up phase. METHODS: This qualitative process evaluation was performed in 11 Belgian oncology departments participating in a scale-up project. Semi-structured interviews with local coordinators (n = 13) and members of the project teams (n = 19), responsible for the co-creation of the care pathway, were conducted. Data were thematically analyzed. RESULTS: Despite the external support (including group-level coaching and the use of well-defined supportive tools) to promote self-directedness, the co-creation process was perceived burdensome. Three influencing factors were persistent throughout the pilot and scale-up phase: a) shared leadership among the coordinator, physician and hospital management, b) an intrinsically motivated team driven by additional extrinsic factors, and c) a balance between external support and self-directedness. CONCLUSION: This study shows that the self-directed co-creation of a care pathway is feasible on the condition that important prerequisites are met, including shared leadership and team motivation. More concrete tools, such as a model care pathway, seem needed to increase feasibility of the self-directed co-creation of the care pathway. Yet, these tools should allow tailoring to the specific hospital context. The findings of this study can be useful for further scale-up to other oncology centers, but can also be extrapolated to other healthcare settings.

The cocreation of care pathways for patients treated with oral anticancer drugs: From assessment data to an actual care pathway.

RATIONALE: Due to the emergence of oral anticancer therapies, existing care processes in oncology - that are mainly focused on in-hospital treatments - must be rethought. The development of a care pathway is a well-known methodology to reorganise and standardise care for a specific patient group. However, care pathway development might be complex and burdensome for healthcare teams, requiring a well-thought-out methodology that provides guidance to the teams. AIMS AND OBJECTIVES: In 10 Belgian oncology departments, multidisciplinary teams developed a tailored care pathway, aimed to offer high-quality patient-centred care. Each department followed a cocreation methodology, consisting of a current practice assessment, a priority setting, and the actual development of the care pathway. The aim of this study was to investigate how and to which extent underperformed evidence-based key elements (KEs), identified in the current practice assessment, guided the development of the care pathway, and how compliant the final care pathways are with the list of evidence-based KEs. METHODS: A qualitative content analysis was conducted to describe and compare the results of each phase of the cocreation methodology. RESULTS: This study shows that much of the evidence and feedback on current practice that was used as a starting point, got lost throughout the cocreation process. Only a limited proportion of the (seriously) underperformed KEs were prioritised by the multidisciplinary teams. Furthermore, several prioritised KEs could not be retrieved in the care pathway documents. Also, the final care pathways were not fully compliant with existing evidence. CONCLUSION: Based on the findings, a more rigorous cocreation methodology seems needed, offering very concrete support for multidisciplinary teams to integrate the prioritised KEs in the care process (e.g., by using a model care pathway). Next to the selfreported performance data from healthcare professionals and patients, more objective data (e.g., walkthrough, medical records) and more extensive patient involvement should be considered in the priority setting.

Perspectives on seamless collaboration between primary and secondary care for oral anticancer treatments.

Patients who take oral anticancer drugs (OACD) alternate between the hospital and the community setting. Little is known about how general practitioners (GPs) and community pharmacists (CPs) from primary care (PC) can be involved in providing seamless care. In an exploratory qualitative study, semi-structured interviews with healthcare professionals from primary and secondary care (SC) and (N = 26) were performed to investigate perceptions of seamless collaboration for patients on OACD. Seamless collaboration initiated by SC was restricted to informing GPs about treatment-initiation and delegating limited tasks to them in treatment monitoring. CPs are currently not informed by SC about the treatment. PC expressed willingness for seamless collaboration. However, collaboration is currently impeded due to an expressed lack of trust and desire for control by SC. Moreover, SC expressed unfamiliarity with the organization of PC. Findings suggest that healthcare professionals from SC and PC need to get to know each other and to discuss expectations in the seamless care for patients on OACD. A possible strategy is to elaborate a shared care model based on a partnership between PC and SC, in which the specific expertise of each partner contributes to patient-centered care and the qualitative and safe use of OACD.

A qualitative evaluation of the process of creating and implementing an interprofessional care pathway for patients treated with oral anticancer drugs.

PURPOSE: To investigate factors affecting the co-creation and implementation of care pathways for patients treated with oral anticancer drugs. METHODS: An explorative qualitative process evaluation was performed at four Belgian hospitals, co-creating and implementing a care pathway for patients on oral anticancer drugs. Semistructured interviews and focus groups were performed by a) local coordinators leading an interprofessional project team during the co-creation and implementation stage, b) external implementation coaches, and c) teams of healthcare professionals with a role in the care pathway. In total, 47 stakeholders were interviewed. Interviews were audio-taped, transcribed verbatim, and analyzed thematically. RESULTS: We found four factors affecting co-creation and implementation of care pathways for patients on oral anticancer drugs. Developing an adequate supporting context using motivated interprofessional project teams of clinical and management staff led by competent coordinators is one important facilitator. Leadership of local coordinators and oncologists is crucial for progressing the co-creation. Other factors included the complexity of the oral anticancer drug intervention, the interprofessional character of the care pathway, and involving primary care. External coaching during co-creation proved an important facilitator. CONCLUSIONS: Prior investigation of willingness and motivation to change in clinical and management staff, competent coordinators, and leadership of oncologists are needed. In addition, external support determines the success of co-creating and implementing care pathways for patients on oral anticancer drugs.

Impact of COVID-19 on the Organization of Cancer Care in Belgium: Lessons Learned for the (Post-)Pandemic Future.

The COVID-19 pandemic has posed tremendous challenges to healthcare systems. Care for oncology patients, a vulnerable population during the pandemic, was disrupted and drastically changed. A multicenter qualitative study was conducted in 11 Belgian hospitals with the aim to provide an overview of the most important changes that were made in the care of oncology patients in Belgium. In each hospital, a nurse or physician was interviewed by telephone. Two rounds of structured interviews-during the first and second waves of the pandemic-were conducted. The data were analyzed using content analysis. The impact of COVID-19 on care practices for patients with cancer was enormous during the first wave. Major changes, including good but also less patient-centered practices, were implemented with unprecedented speed. After the initial wave, regular care was resumed and only limited new care practices were maintained. In only a few hospitals, healthcare teams reflected on lessons learned and on the maintenance of good practices that came from the COVID-19 experience. As a result, opportunities for healthcare innovation and quality improvement seemed to be missed. Our recommendations aim to support policymakers, hospital managers, and healthcare professionals to learn from the COVID-19 pandemic and to drive patient-centered initiatives in future cancer care.

Experiences of patients with cancer and their relatives confronted with COVID-19 related delay or change in care: A qualitative study.

AIMS: To provide in-depth insight into how patients and their relatives experienced change or delay in cancer treatment and care due to COVID-19. DESIGN: A qualitative study including semi-structured interviews with patients with cancer and their relatives. METHODS: Between July and October 2020, 42 patients who were confronted with a change or delay in cancer treatment or care, and 11 relatives were interviewed. Data collection and analysis were performed according to the most important methods of grounded theory, including iterative data collection and analysis, theoretical sampling, constant comparative analysis and theoretical sensitivity. RESULTS: This study shows that patients with cancer and relatives experienced paradoxical feelings when confronted with change or delay in treatment or care due to COVID-19. Patients and relatives felt relieved (e.g. less risk of infection), but were also concerned and anxious (e.g. fear for progression, fear for more side effects). Due to these ambivalent feelings, it was difficult for patients and relatives to cope with the change or delay in treatment or care, both when this was decided by the physician and by themselves. In combination with the general impact of COVID-19 on their daily lives, the change or delay led to additional distress. The interviews showed that exploring the meaning of change or delay of care for patients and their relatives and discussing what would help them might prevent or relieve distress. CONCLUSION: The findings of our study show that COVID-19 and the associated delay or changes in cancer treatment and care had a major impact on the well-being of patients and their relatives. Person-oriented care is even more important during (emergency) situations in which care might be changed or delayed.

CONTACT-Patient-Centred Care Questionnaire to assess care for patients treated with oral anticancer drugs: Development and psychometric validation.

OBJECTIVE: Instruments to measure quality of patient-centred care (PCC) for the rapidly growing population of patients treated with oral anticancer drugs (OACD) are lacking. The aim of this study was to develop a valid and reliable instrument to assess PCC in the context of OACD. METHODS: The CONTACT-Patient-Centred Care Questionnaire (CONTACT-PCCQ) was developed based on a validated set of key elements (KEs) for patient-centred education and counselling in patients taking OACD, and face validity was evaluated by means of cognitive interviews. In 16 Belgian hospitals, adult patients treated with OACD were asked to complete the questionnaire. Construct validity was investigated through exploratory factor analyses (EFAs) and internal consistency of the subscales was examined using Cronbach's alpha. RESULTS: The initial 86-item instrument was completed by 464 patients. Each EFA confirmed the a priori PCC-based structure of the subscales. However, EFA revealed more than one factor for two of the subscales. Therefore, multiple subsections within these subscales were created. Based on factor loadings and item content, six items were removed. This resulted in a final 80-item instrument with seven subscales and five subsections. Cronbach's alpha for the subscales and subsections ranged between 0.732 and 0.918, which implies adequate internal consistency. CONCLUSION: A final instrument with 80 items divided into seven subscales, covering all six dimensions of PCC, was obtained. The CONTACT-PCCQ has acceptable psychometric properties, supporting its use as a measure to assess care experiences of patients treated with OACD.

Evaluation of interprofessional care processes for patients treated with oral anticancer drugs.

Information on interprofessional team composition and functioning in the care for patients on oral anticancer drugs (OACDs), and how healthcare professionals (HCPs) evaluate in-hospital care processes is scarce. We aimed to investigate interprofessional care processes for OACD-patients in a partially mixed-methods study. A combination of (a) the CareProces Self-Evaluation Tool (CPSET), completed by HCP-team members by health profession who were either currently involved in care processes (oncologists and nurses) or potentially involved in future care (pharmacists, psychologists, social workers), and by hospital managers (N = 87) and (b) semi-structured interviews in a subsample of oncologists, nursing staff, and pharmacists (N = 26) were used. Care process coordination was evaluated poorly, mainly by nurses, pharmacists, and psychologists. Nurses and pharmacists believed that they were not engaged in the organization of OACD care, lacked role clarity, and perceived no meaningful interprofessional practice. HCPs had different perceptions toward timing and planning of patient education and follow-up. Monitoring of care processes occurred only occasionally and was unstructured resulting in apoor complication-management and variance within care processes. Care processes for OACD-patients showed opportunities for optimization of interprofessional practice in timing, planning, and monitoring. Rethinking care processes through co-design is needed.