SystematiC nurse-led cONsultations based oN Electronic patient-reported outcome among women with ovarian- or endometrial Cancer during chemoTherapy – protocol for the CONNECT study
“…Of the 17 non-empirical papers, six were study protocols that utilized PPI methods, including a study with an exploratory and participatory design to improve resilience in healthcare [ 68 ], a qualitative study to identify and prioritize future cancer research agenda [ 67 ], a meta-epidemiological study investigating PPI in an intensive care setting [ 78 ], a quasi-experimental cohort research study on nurse-led consultations [ 64 ], a multiple method study to develop a core outcome set for intensive care unit patients [ 66 ] and a large-scale panel study evaluating PPI awareness in aging and healthcare research [ 70 ]. The remaining eleven non-empirical papers provided diverse perspectives on PPI [ 2 , 62 , 63 , 65 , 69 , 71 , 73 – 77 ].…”
“…PPI was utilized across various stages of the research cycle with 19 studies reporting PPI to identify and prioritize research questions [ 25 , 28 – 31 , 40 , 42 , 44 , 45 , 48 , 51 – 54 , 58 , 60 , 61 , 65 , 67 ], and 15 studies reported employing PPI during the commissioning stage [ 28 , 34 , 36 , 38 , 40 , 45 , 50 – 52 , 54 , 58 , 65 , 67 , 68 , 70 ]. In the designing & managing stage, PPI was used in 17 studies [ 15 , 26 , 29 , 38 , 40 – 45 , 48 – 52 , 61 , 64 ] with patients providing feedback on the interview guide, methods, procedures, and study planning. Ten studies reported to involved patients actively in research [ 29 , 34 , 35 , 38 , 44 , 45 , 50 – 52 , 58 ], with one study reporting involving patients and family in analysis [ 50 ], and another reporting asking patients to help organize qualitative themes [ 35 ].…”
Background
Over the past decades, there has been a growing international interest in user involvement in healthcare research. However, evidence on the management and impact of patient and public involvement in Nordic healthcare research remains limited.
Objective
The aim was to explore and delineate the current state, practice, and impact of patient and public involvement in healthcare research across different areas of healthcare and patient populations in the Nordic countries.
Methods
We conducted a scoping review using nine scientific databases and gray literature from 1992–2023. Sources were categorized as empirical or non-empirical. We used the Guidance for Reporting Involvement of Patients and the Public Short Form 2 checklist for reporting of patient and public involvement in healthcare research and the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews.
Results
A total of 56 publications were included, consisting of 39 empirical and 17 non-empirical sources. Gray literature varied among countries and institutions encompassing different types of documents. We found an increase in the number of publications on patient and public involvement in Nordic healthcare research. This was evidenced by the growing number of references and institutional initiatives intended at involving the public, indicating the increasing emphasis on patient and public involvement in Nordic healthcare research. The terminology used to describe patient and public involvement varied over time. However, there has been a gradual narrowing down of terms as the concept of PPI has become more integrated into research practices, particularly with the involvement of funding agencies.
Conclusion
The utilization of patient and public involvement in Nordic healthcare research has substantially increased, proliferated, and gained widespread acceptance across diverse healthcare domains. The variety of approaches challenged our scoping review in terms of systematic description and impact. Patient and public involvement was applied in one or more research stages using different methodologies and terms. International agreement on terms and definitions is needed for reliable interpretation of the use of patient and public involvement in Nordic healthcare research.
“…Of the 17 non-empirical papers, six were study protocols that utilized PPI methods, including a study with an exploratory and participatory design to improve resilience in healthcare [ 68 ], a qualitative study to identify and prioritize future cancer research agenda [ 67 ], a meta-epidemiological study investigating PPI in an intensive care setting [ 78 ], a quasi-experimental cohort research study on nurse-led consultations [ 64 ], a multiple method study to develop a core outcome set for intensive care unit patients [ 66 ] and a large-scale panel study evaluating PPI awareness in aging and healthcare research [ 70 ]. The remaining eleven non-empirical papers provided diverse perspectives on PPI [ 2 , 62 , 63 , 65 , 69 , 71 , 73 – 77 ].…”
“…PPI was utilized across various stages of the research cycle with 19 studies reporting PPI to identify and prioritize research questions [ 25 , 28 – 31 , 40 , 42 , 44 , 45 , 48 , 51 – 54 , 58 , 60 , 61 , 65 , 67 ], and 15 studies reported employing PPI during the commissioning stage [ 28 , 34 , 36 , 38 , 40 , 45 , 50 – 52 , 54 , 58 , 65 , 67 , 68 , 70 ]. In the designing & managing stage, PPI was used in 17 studies [ 15 , 26 , 29 , 38 , 40 – 45 , 48 – 52 , 61 , 64 ] with patients providing feedback on the interview guide, methods, procedures, and study planning. Ten studies reported to involved patients actively in research [ 29 , 34 , 35 , 38 , 44 , 45 , 50 – 52 , 58 ], with one study reporting involving patients and family in analysis [ 50 ], and another reporting asking patients to help organize qualitative themes [ 35 ].…”
Background
Over the past decades, there has been a growing international interest in user involvement in healthcare research. However, evidence on the management and impact of patient and public involvement in Nordic healthcare research remains limited.
Objective
The aim was to explore and delineate the current state, practice, and impact of patient and public involvement in healthcare research across different areas of healthcare and patient populations in the Nordic countries.
Methods
We conducted a scoping review using nine scientific databases and gray literature from 1992–2023. Sources were categorized as empirical or non-empirical. We used the Guidance for Reporting Involvement of Patients and the Public Short Form 2 checklist for reporting of patient and public involvement in healthcare research and the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews.
Results
A total of 56 publications were included, consisting of 39 empirical and 17 non-empirical sources. Gray literature varied among countries and institutions encompassing different types of documents. We found an increase in the number of publications on patient and public involvement in Nordic healthcare research. This was evidenced by the growing number of references and institutional initiatives intended at involving the public, indicating the increasing emphasis on patient and public involvement in Nordic healthcare research. The terminology used to describe patient and public involvement varied over time. However, there has been a gradual narrowing down of terms as the concept of PPI has become more integrated into research practices, particularly with the involvement of funding agencies.
Conclusion
The utilization of patient and public involvement in Nordic healthcare research has substantially increased, proliferated, and gained widespread acceptance across diverse healthcare domains. The variety of approaches challenged our scoping review in terms of systematic description and impact. Patient and public involvement was applied in one or more research stages using different methodologies and terms. International agreement on terms and definitions is needed for reliable interpretation of the use of patient and public involvement in Nordic healthcare research.
Background:
Women with ovarian or endometrial cancer experience multiple symptoms during chemotherapy. Specialized cancer nurses possess specific knowledge and competencies to effectively monitor and manage treatment-related toxicities and provide self-management support.
Objective:
To describe the conception and development of a comprehensive cancer symptom model of care in an oncological setting for women diagnosed with ovarian or endometrial cancer.
Methods:
The participatory evidence-based, patient-focused process for guiding the development, implementation, and evaluation of advanced practice nursing roles—the participatory, evidence-based, patient-centered process for advanced practice (PEPPA) framework directed the process. The first 6 steps of this 9-step framework were utilized to incorporate research evidence, engage, and obtain the input of key stakeholders.
Results:
Stakeholders (n = 27) contributed with specific knowledge, perspectives, and feedback to the entire development process, and several needs were identified. Following structured discussions, a new model of cancer symptom care with elements such as symptom management, electronic patient-reported outcomes, and an expanded nursing role in the form of nurse-led consultations was developed.
Conclusions:
We effectively utilized the PEPPA framework to design a new cancer symptom model of care, that was agreed upon by key stakeholders.
Implications for Practice:
This stakeholder-engaged, and evidence-driven process could be used as a template for others wanting to develop a population-specific model of care to improve cancer symptom management.
What is Foundational:
With the expansion of the cancer nursing role, the new model has the potential to improve the quality of cancer care and health outcomes related to symptom management.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
