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 (Le. 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

Regenerative medicine: Stroke survivor and carer views and motivations towards a proposed stem cell clinical trial using placebo neurosurgery

Background  Few studies explore stroke survivor views and motivations towards stem cell therapy (SCT). This qualitative study explores the views and motivations of both stroke survivors and their partners/carers towards a proposed 2-arm Phase III Randomised Controlled Trial (RCT) comparing intracerebral insertion of stem cells with placebo neurosurgery in stroke survivors with disability.  Objective  To explore views and motivations towards a proposed 2-arm stem cell trial and identify factors that may impede and enhance participation.  Design  This study adopts a naturalistic design to explore the complexity of this field, employing a participatory action-research approach comprising a specialized Conversation (World) Café form of focus group. Data were collected via 5 Conversation Cafés with stroke survivors (age 40-75) and partners/carers between June and October 2016. Of 66 participants, 53 (31 male, 22 female) were stroke survivors and 13 (6 female, 7 male) were partners/carers. Qualitative data were analysed using a thematic approach.  Discussion and Conclusion  Stroke survivor views and motivations reflect anticipation of the personal and future benefits of regenerative medicine. Partners/carers sought to balance the value of stroke survivor hope with carrying the weight of hope as carer, a conflict burden adding to known caregiver burden. All participants expressed the need for during and post-trial psychological support. This study provides a rare opportunity to explore the prospective views and motivations of stroke survivors and their partners/carers towards a proposed Phase III 2-arm RCT. This adds weight to qualitative evidence exploring capacity, consent, decision making, perceptions of treatment risk and supports required for clinical trial participation

A Narrative Review on the Collection and Use of Electronic Patient-Reported Outcomes in Cancer Survivorship Care with Emphasis on Symptom Monitoring

Electronic patient-reported outcome (ePRO) applications promise great added value for improving symptom management and health-related quality of life. The aim of this narrative review is to describe the collection and use of ePROs for cancer survivorship care, with an emphasis on ePRO-symptom monitoring. It offers many different perspectives from research settings, while current implementation in routine care is ongoing. ePRO collection optimizes survivorship care by providing insight into the patients' well-being and prioritizing their unmet needs during the whole trajectory from diagnosis to end-of-life. ePRO-symptom monitoring can contribute to timely health risk detection and subsequently allow earlier intervention. Detection is optimized by automatically generated alerts that vary from simple to complex and multilayered. Using ePRO-symptoms during in-hospital consultation enhances the patients' conversation with the health care provider before making informed decisions about treatments, other interventions, or self-management. ePRO(-symptoms) entail specific implementation issues and complementary ethics considerations. The latter is due to privacy concerns, digital divide, and scarcity of adequately representative data for particular groups of patients

Development and evaluation of a complex nursing intervention aimed at reducing chemotherapy-related symptom burden

This doctoral project aims at developing and evaluating a patient-focused nurse-led supportive care program to reduce symptom burden during chemotherapy. First, a systematic review will be conducted to explore the characteristics and the effects of complex nurse-led interventions aimed at reducing symptom burden during chemotherapy as reported in the literature. Also, a qualitative study using semi-structured interviews with patients treated with chemotherapy will clarify how adult cancer patients treated with chemotherapy, deal with the side effects of their treatment at home. Departing from these patient experiences and the evidence from the literature, we will develop a patient-focused nurse-led supportive care program to reduce symptom burden during chemotherapy, using the Intervention Mapping approach. Finallly, this program will be evaluated by using quantitative and quallitative methodology. An sequential before-after study will be set up to study the effect of the program on symptom distress and symptom burden in adult patients with chemotherapy who are getting their first chemotherapy treatment ever. A qualitative study using interviews will enable to explore how chemotherapy patients experience the patient-focused nurse-led supportive care program.status: publishe

Implementation of a symptom diary to improve symptom detection and care for adult cancer patients treated with chemotherapy: The nurse and patient perspective

Introduction: In todays’ cancer care, symptoms are still underestimated and undertreated. Overcoming barriers in communicating and adequately reporting symptoms is a crucial step in achieving better symptom care. Aim: This mixed-method evaluation of the patient and nurse perspective aimed at exploring the use and user experience of a symptom diary for adult patients with cancer treated with chemotherapy in the University Hospitals Leuven. Method: In the patient evaluation, 143 patients completed a survey exploring the patients’ use and experience of the symptom diary. A secondary analysis of 17 individual semi-structured interviews was performed to look into the core concepts in the experience of the diary. In the nurse evaluation, a survey to examine nurses’ behaviour and attitudes towards the symptom diary was completed by 97 oncology nurses. Furthermore, 3 focus groups with 14 nurses were held to further explore the survey results. Results: The large majority of the patients found the diary feasible and 80% of them had been or were still using the diary. Patients appreciated the diary as a facilitator in their communication about symptoms with health care professionals (HCP). When HCP made poor use of their diary, patients felt disappointed and discouraged. From the nurse perspective, the majority of participating nurses believed that the diary helped to get a quicker and more complete insight into patients’ symptom burden. Some felt hesitant about the patient perception of the symptom diary. The adoption by the whole team and the collaboration with doctors was considered essential in persisting the use of the diary. Conclusion: The results of this mixed-method evaluation indicate the value of the symptom diary for both patients and nurses, but at the same time they show some important action points for it’s further implementation process.status: publishe

Use of a symptom diary during chemotherapy: A mixed-methods evaluation of the patient perspective

Patients' perceptions about tools for self-reporting symptoms experienced at home may influence both the patients' use of the tool and ultimately the efficacy of the interventions. The aim of this study was to determine the extent patients use a paper-pencil symptom-monitoring diary during chemotherapy treatment, to identify factors that mediate its use at home, and to determine perceptions patients have of the diary.status: publishe

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.status: Published onlin