Sexual health in Belgian cervical cancer survivors: an exploratory qualitative study.

PURPOSE: To assess experiences of sexuality and of receiving sexual healthcare in cervical cancer (CC) survivors. METHODS: A qualitative phenomenological study using semistructured one-on-one interviews was conducted with 15 Belgian CC survivors recruited in 5 hospitals from August 2021 to February 2022. The interviews were audiotaped and transcribed verbatim. Data were analyzed using inductive thematic analysis. COREQ and SRQR reporting guidelines were applied. RESULTS: Most participants experienced an altered sexuality after CC treatment with often long-term loss/lack of sex drive, little/no spontaneity, limitation of positions to avoid dyspareunia, less intense orgasms, or no sexual activity at all. In some cases, emotional intimacy became more prominent. Physical (vaginal bleeding, vaginal dryness, dyspareunia, menopausal symptoms) and psychological consequences (guilt, changed self-image) were at the root of the altered sexuality. Treatment-induced menopause reduced sex drive. In premenopausal patients, treatment and/or treatment-induced menopause resulted in the sudden elimination of family planning. Most participants highlighted the need to discuss their altered sexual experience with their partner to grow together toward a new interpretation of sexuality. To facilitate this discussion, most of the participants emphasized the need for greater partner involvement by healthcare providers (HPs). The oncology nurse or sexologist was the preferred HP with whom to discuss sexual health. The preferred timing for information about the sexual consequences of treatment was at treatment completion or during early follow-up. CONCLUSION: Both treatment-induced physical and psychological experiences were prominent and altered sexuality. Overall, there was a need for HPs to adopt proactive patient-tailored approaches to discuss sexual health.

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.

Dynamics and processes influencing role integration of advanced practice nurses and nurse navigators in oncology teams.

PURPOSE: Exploring the persisting presence of underlying processes, dynamics, experienced barriers and facilitators of Advanced Practice Nurses (APN) in oncology and Oncology Nurse Navigators (ONN) during their role integration in an interprofessional team over a research period of seven years. METHODS: A qualitative study based on the principles of Grounded Theory, in which individual semi-structured interviews and focus groups were conducted with 51 ONN and APN from 11 university and local hospitals in Belgium between 2011-2018. Data were analyzed to develop a framework that consists of different themes. RESULTS: ONN and APN experienced a lonely journey during role integration. They were searching for partners, medical knowledge and acknowledgement from the interprofessional team. ONN and APN had a watchful attitude and tried to make themselves visible to ensure they were involved in the team and to preserve their role and responsibilities. An unclear role description to the interprofessional team, and a lack of coaching and guidance were influencing factors in the experience of ONN and APN. CONCLUSION: ONN and APN in oncology feel difficulties to integrate their role in existing interprofessional teams. A lack of role clarity, the interprofessional team environment and a desire for coaching and guidance are influencing factors to implement APN roles. Coaching and mentorship of novice ONN/APN and their interprofessional team and healthcare managers are needed to address these issues. These findings could form the basis for a mentorship program for ONN/APN and their interprofessional team to enhance role integration.

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.

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.

Patient-centered care coordination, education and counseling of patients treated with oral anticancer drugs: An importance-performance analysis.

PURPOSE: To analyse the importance and performance of key elements in patient-centered care coordination, education and counseling of patients treated with oral anticancer drugs. METHOD: In four Belgian non-academic hospitals, the importance and performance of a set of 82 key elements was cross-sectionally evaluated by primary and secondary healthcare professionals and by patients. These key elements were divided in 6 themes: coordination of care, style and content of patient contacts, medication counseling at treatment initiation, follow-up of treatment, psychosocial support, and involvement of family and friends. Participants were asked to indicate for each key element if it was implemented in the current care process for patients on oral anticancer drugs ('yes', 'no', 'I don't know') and if they considered it important that the component was implemented or would be in the future ('yes' or 'no'). Three levels of performance were defined, based on the number of participants who had answered 'yes' or 'no': 'systematically performed' (≥90% of participants), 'not systematically performed' (≥75% and <90%) and 'not performed' (<75%). Importance-rates were based on the number of 'yes' or 'no'. RESULTS: In total, 85 participants evaluated the key elements. More than half of key elements, 13/82 (15.9%) and 35/82 (42.6%) respectively, were considered as 'not' or 'not systematically performed'. The majority of these elements concerned coordination of care, medication counseling at treatment initiation and follow-up of treatment. Especially key elements on involving primary care and on discussing adherence had low performance rates. Nearly all key elements were assigned an importance score of ≥90%. CONCLUSIONS: Performance of key elements of patient-centered care coordination, education and counseling of patients treated with oral anticancer drugs proved moderate. Our findings suggest that strategies are needed to prioritize and operationalize key elements to coordinate transmural care and to provide effective education and counseling.

Collaborative network to take responsibility for oral anticancer therapy (CONTACT): Study-protocol investigating the impact of a care pathway.

AIM: To evaluate the effectiveness, feasibility, meaningfulness and appropriateness of the development and implementation of a transmural care pathway in four hospitals in Flanders to improve self-management support in healthcare professionals and self-management in patients treated with oral anticancer drugs. DESIGN: A multicentre, prospective, interventional before-after study. METHOD: The development and implementation of the care pathway is based on the 7-phase method by Vanhaecht et al. (2012). Before and after, the care process will be evaluated from the perspective of patients, healthcare professionals in the hospital and from primary care and the available evidence. In both study-parts, a mixed methods approach will be used including observations, semi-structured interviews, focus groups and validated questionnaires for outcome assessments. The primary outcome is self-management in patients and self-efficacy and perception towards self-management in healthcare professionals. This study was funded in October 2015 and has been approved by the Ethics Committee in June 2016. DISCUSSION: Due to the growing number of patients taking oral anticancer drugs, there is need for a rigorous study that aims to optimize self-management in patients and self-management support provided by an interdisciplinary team of healthcare professionals (including oncology nurses and clinical nurse specialists). The care pathway should therefore consist of effective self-management supporting interventions and should clearly define the role of all stakeholders. IMPACT: This study attempts to obtain standardization, uniformity and continuity of self-management support provided by healthcare professionals to patients on oral anticancer drugs with the aim to achieve an adequate level of self-management. TRIAL REGISTRATION: clinicaltrials.gov NCT02861209.

Key elements for the education and counselling of patients treated with oral anticancer drugs.

PURPOSE: The process of education and counselling of patients treated with oral anticancer drugs, aimed to achieve adequate self-management, involves different stakeholders (i.e. physicians, oncology nurses, pharmacists) from primary and secondary care. However, currently no guiding principles exist on how to organize and perform education and counselling for these patients. Therefore, the purpose of this study was to develop and build consensus on key elements for the education and counselling in patients on oral anticancer drugs. METHODS: A multi-method approach combining a literature search, semi-structured interviews with patients and healthcare professionals, and input from experts were used to develop an initial list of key elements. Subsequently, consensus was built in a two-round Delphi-study, involving patients and healthcare professionals from primary and secondary care. Key elements were retained if at least 80% of respondents in all groups considered the element as important or if in at least one group 90% consensus was reached. RESULTS: The initial list contained 110 key elements, divided in 7 themes: coordination of care, patient contacts: style and content, medication counselling at the start of the treatment and during follow-up, psychosocial support, and involvement of family and friends. After the first Delphi round, 80% consensus was reached for 23 elements; 6 new key elements were added. After the second round, 80% consensus was reached for 51 out of 116 elements; 31 elements were added following the 90%-rule, yielding a list of 82 elements. CONCLUSION: The final list of 82 key elements, obtained in this study, could be used to develop clinical pathways that guide adequate education and counselling of patients on oral anticancer drugs. Due to the open description, the implementation of these elements can be adapted to the specific context and composition of the oncology team.