BACKGROUND Illness of a family member impacts the entire family. Family relationships, roles and ... more BACKGROUND Illness of a family member impacts the entire family. Family relationships, roles and tasks often change, and neuro-oncological caregivers experience a high level of burden and distress when playing a vital role in the informal care of the patient. The theory of Family Systems Nursing advises to approach the family rather than merely the patient. Within Family System Nursing the Family Nursing Conversations is an important intervention that focus on the interactions within a family and between the nurse and the family. The Calgary Family Assessment and Intervention Model (CFAM/CFIM) guide clinical practice to be family focused. According to these models, the drawings of genograms and ecomaps are efficient tools to graphicly portray the specific family constellation and social relationships. This presentation shows how genograms and ecograms can be applied to strength the dialogue with a family when implementing family-focused conversations. MATERIAL AND Methods In the neu...
Background Patient and Public Involvement (PPI) in health research is gaining increased attention... more Background Patient and Public Involvement (PPI) in health research is gaining increased attention and acceptance worldwide. Reliable measurements are crucial to accurately assess, monitor, and evaluate patient involvement efforts in research. The Patient Engagement in Research Scale (PEIRS-22) measures meaningful patient and family caregiver engagement in research. This study focuses on three primary objectives: 1) translation of the PEIRS-22 from English to Danish, followed by linguistic validation and cultural adaptation; 2) assessing the applicability of the Danish PEIRS-22; and 3) focus group interviews to explore the user experiences of PPI. Methods A three-phase multi-method study was conducted. In phase one, the PEIRS-22 was translated, linguistically validated and culturally adapted to Danish. In phase two individuals from three distinct cancer patient advisory boards responded to the Danish version of PEIRS-22 to assess its applicability. Three focus group interviews were c...
• The continuous involvement of end users and the iterative modifications on MedFC produced an ap... more • The continuous involvement of end users and the iterative modifications on MedFC produced an app with an excellent usability. • A high level of acceptability of the app was demonstrated in this study. • The pilot feasibility study showed that it would be feasible to use MedFC in routine clinical practice.
Background The purpose of this case study is to describe how a vulnerable group of patients can b... more Background The purpose of this case study is to describe how a vulnerable group of patients can be included in research. The activities, challenges, lessons learned, and reflections on the importance of patient involvement in research for 5 years (2016-2021) at the adolescent and young adult (AYA) cancer support facility, Kraeftvaerket, are reported. Main body A patient panel at Kraeftvaerket, the Youth Panel has multiple aims, one of which is the ability to perform patient involvement in research, with the goal of achieving research of high quality. We here describe how Patient and Public involvement (PPI) can be customized to AYAs in a cancer trajectory, who face many challenges, including those in the physical, psychological, and social domains. During 2016-2021, Youth Panel meetings were planned every third month but interrupted during the COVID-19 pandemic. With a flexible structure and a dynamic panel including 10-15 varying AYAs in a cancer trajectory, engagement and involvement have been maintained. Eight research topics were investigated, seven of which were discussed and confirmed to be important by the Youth Panel. Out of eight topics, three were raised by patients, and five by researchers. One was not discussed due to COVID-19. Some of the challenges we have experienced were related to the flexible meeting structure and the differing expectations and priorities as well as the impact of COVID-19. However, we experienced that patient involvement is possible in the field of AYA oncology if a trusting environment is created. A key finding in our case study was, that without a national Danish PPI program and no defined international standard for PPI in AYA cancer research yet, we were able to give patients the possibility to give input to researchers on topics where research is missing. Conclusion Here, we demonstrate how patient involvement in research has been performed at an AYA cancer facility, Kraeftvaerket, during a 5-year period. We encourage others to perform patient-involving research, even in challenging populations. Ideally this must follow international standards for PPI in AYA cancer research when such exist to improve research with crucial insight from patients.
Background As a first step to reach consensus on the key constructs and outcomes in neuro-oncolog... more Background As a first step to reach consensus on the key constructs and outcomes in neuro-oncology caregiver research, we performed a systematic review to evaluate the constructs that are being evaluated in research studies and how these have been assessed. Methods All peer-reviewed publications with primary data reporting on outcomes of family caregivers of adult primary brain tumor patients were eligible. Electronic databases PubMed/Medline, Embase, Web of Science, Emcare, Cochrane Library, and PsycINFO were searched up to September 2021. Using Covidence, title and abstract screening, full-text review, and data extraction were done by two researchers independently, with a third guiding consensus. Constructs as reported in each study, and how these were assessed were the primary result. Results Searches yielded 1090 unique records, with 213 remaining after title/abstract screening. Of these, 157 publications met inclusion criteria, comprising 120 unique studies. These originated from 18 countries and were published between 1996 and 2022. Most were observational (75%) cross-sectional (61%) studies, reporting on quantitative methods (62%). Twenty-seven different constructs were assessed and mapped along the Caregiver Health Model (CGHM) categories, namely, caregiver health, needs, tasks, beliefs and attitudes, and environment. Seventeen questionnaires were used >2 times to measure the same construct, with the vast majority of questionnaires only used across one or two studies. Conclusions Neurooncology caregiving research is a field gaining traction, but lags behind in clear definition of key constructs, and consistency in assessment of these constructs. Developing consensus or guidance will improve comparability of studies, meta-analyses, and advance the science more quickly.
Background High-grade gliomas are aggressive and life-threatening brain tumors. At the time of re... more Background High-grade gliomas are aggressive and life-threatening brain tumors. At the time of recurrence, the patients and their families need to decide on future treatment. None of the treatment options are curative, and tradeoffs between benefits and harms must be made. This study aimed to explore the patients’ and family members’ decisional needs when making the decision. Methods We performed semi-structured individual interviews with patients and family members to explore their experiences during the decision making. A phenomenological hermeneutical analysis was conducted. Results A total of 15 patients and 14 family members aged 22-79 years participated in the study. Most of the family members were partners to the patient. The findings were centered around three interrelated and concurrently occurring themes: (I) A patient- and family-centered decision making, including the subtheme of being a supportive family member; (II) Balanced information and a trustful professional encounter; and (III) The value of hope. We found that both the patients and family members preferred to be involved in the decision making and that a trustful relationship with the surgeon, balanced and tailored information, and sufficient time to make the decision were essential. The experience of hope had a significant influence on patients’ decisions. Conclusion This study found that patient and family involvement, balanced information, and hope were the primary decisional needs of patients and family members at the time of recurrent high-grade glioma. Patients and family members can have different decisional needs, making individual needs assessment essential to decisional support.
Objectives The aim of this study was to evaluate onestop surgery (OSS) for carpal tunnel syndrome... more Objectives The aim of this study was to evaluate onestop surgery (OSS) for carpal tunnel syndrome (CTS) regarding symptom relief and patient satisfaction. OSS in our setting means only one visit to the hospital for surgery and no hospital appointments for preassessment or followup. We hypothesised that relief of symptoms with OSS is comparable with that in non-OSS patients reported in the literature. Design This is a long-term retrospective follow-up study (56.5 months) of 1003 patients referred for CTS and discharged with or without surgery from an OSS clinic. Of the original cohort, 671 patients completed the long-term follow-up telephone interview. results Two-thirds of the patients were free of even minor symptoms following surgery. The symptom relief and patient satisfaction in this study were comparable with results in non-OSS patients reported in the literature. conclusion The implementation of a clinical pathway and OSS for the management of CTS was safe with good longterm symptom relief and high patient satisfaction.
Abstract The diagnosis of a high-grade glioma usual is followed by functional impairment(s), cogn... more Abstract The diagnosis of a high-grade glioma usual is followed by functional impairment(s), cognitive decline and an impaired psycho-social well-being. This might well have a significant and negative impact on the health related quality of life. The purpose of this study was to explore physical activity levels, prevalence and severity of anxiety and depressive symptoms and health-related quality of life among patients with a highgrade glioma. This paper is based on a longitudinal mixed methods study. Patients (n = 30) completed questionnaires at 5 time points from time of diagnosis until the final follow-up after 1 year. Scores of Karnofsky Performance Status (KPS), physical activity, anxiety and depression and health-related quality of life (FACT-Br) are obtained. Patients’ physical activity level and KPS decrease during the disease- and treatment trajectory. The majority of patients did not report any depressive symptoms, eight individuals (26.7 %) being depressed at various time points. Among a sub-group of participants who completed all study requirements for the entire study period the level of anxiety decreased significantly during the study. The FACT-Br sub-scale of emotional well-being increased significant, indicating a better HRQOL attend of followup. The diagnosis of a HGG leads to an ongoing functional decline measured as a decline of the KPS and a reduced physical activity during leisure time. Supportive care combined with rehabilitative and palliative approaches might well be valuable along the trajectory especially during the post-surgery period when anxiety is at its highest peak.
Collaboration on patient and public involvement (PPI) between public and research communities ful... more Collaboration on patient and public involvement (PPI) between public and research communities fulfils a societal obligation to involve the public in setting the research agenda
Background. Shared decision making (SDM) has proven to be a valuable approach in different patien... more Background. Shared decision making (SDM) has proven to be a valuable approach in different patient populations when treatment decisions are called for. Along the disease trajectory of high-grade glioma (HGG), patients are presented with a series of treatment decisions. At the same time, HGG patients often experience cognitive deterioration and reduced decision-making capacity. This study aimed to review the current knowledge about shared decision making from the perspective of the HGG patient. Methods. Systematic searches were performed in MEDLINE, CINAHL, PsycINFO, and EMBASE. Studies were reviewed against the inclusion criteria and assessed for methodological quality. Descriptive data from the included studies were extracted and a narrative synthesis of the findings was performed. Results. The searches resulted in 5051 original records. Four studies involving 178 HGG patients fulfilled the inclusion criteria. The narrative synthesis revealed that most HGG patients in the included studies appreciated an SDM approach and that sufficient information and involvement increased patients' emotional well-being. The use of a patient decision aid showed the potential to increase knowledge, decrease uncertainty, and affect the treatment decision making of HGG patients. Conclusion. The results indicate that many HGG patients prefer an SDM approach and that SDM can lead patients toward improved emotional well-being. The evidence is weak, however, and firm conclusions and practice guidelines concerning SDM in HGG patients cannot be made. Future research is warranted to improve decision support for HGG patients.
BackgroundThe purpose of antineoplastic treatment of high-grade glioma (HGG) is to achieve progre... more BackgroundThe purpose of antineoplastic treatment of high-grade glioma (HGG) is to achieve progression-free survival with delayed neurological and cognitive deterioration. Health-related quality of life (HRQOL) has become increasingly important next to more traditional outcome measures such as progression-free survival. However, the clinical outcome of long-term, HGG survivors and their caregivers’ quality of life is poorly understood.ObjectiveThis study aims to address HRQOL and perspectives on the daily life experiences of long-term survivors (LTS) with HGG and their caregivers.MethodsThis mixed-methods study applies a convergent design using identical sampling. Separate telephone interviews with patients diagnosed for more than 3 years and their caregivers were conducted. Patients filled out self-reported questionnaires; the Hospital Anxiety and Depression Scale, the Functional Assessment of Cancer Therapy (FACT), General and Brain (FACT-Br), and the Leisure Time Physical Activity Questionnaire.ResultsThree themes shared by patients and their caregivers were identified: searching for meaningful activities, selecting information that enhances self-management strategies and protection for safety reasons. Ten per cent showed moderate depressive symptoms, which is lower compared with the newly diagnosed. The HRQOL scores seem to be rated higher than the normative sample. The FACT-Br total score indicated that a previously identified significant increase in the emotional well-being of 1-year survivors was the same or improved. A central finding is that the LTS expressed frustration and sadness due to their reduced ability to manage work and daily life activities. Caregivers are challenged throughout the entire trajectory, and patient safety issues are a key concern for them.ConclusionsThe LTS desire participation in satisfying, meaningful activities that consider their cognitive and physical capacities. Advance care planning must be a key component in future research, as discussing life strategies can enhance positive beliefs, which are apparently imperative to their well-being.Trial registration numberClinical Trial.gov:NCT02965144
BACKGROUND Illness of a family member impacts the entire family. Family relationships, roles and ... more BACKGROUND Illness of a family member impacts the entire family. Family relationships, roles and tasks often change, and neuro-oncological caregivers experience a high level of burden and distress when playing a vital role in the informal care of the patient. The theory of Family Systems Nursing advises to approach the family rather than merely the patient. Within Family System Nursing the Family Nursing Conversations is an important intervention that focus on the interactions within a family and between the nurse and the family. The Calgary Family Assessment and Intervention Model (CFAM/CFIM) guide clinical practice to be family focused. According to these models, the drawings of genograms and ecomaps are efficient tools to graphicly portray the specific family constellation and social relationships. This presentation shows how genograms and ecograms can be applied to strength the dialogue with a family when implementing family-focused conversations. MATERIAL AND Methods In the neu...
Background Patient and Public Involvement (PPI) in health research is gaining increased attention... more Background Patient and Public Involvement (PPI) in health research is gaining increased attention and acceptance worldwide. Reliable measurements are crucial to accurately assess, monitor, and evaluate patient involvement efforts in research. The Patient Engagement in Research Scale (PEIRS-22) measures meaningful patient and family caregiver engagement in research. This study focuses on three primary objectives: 1) translation of the PEIRS-22 from English to Danish, followed by linguistic validation and cultural adaptation; 2) assessing the applicability of the Danish PEIRS-22; and 3) focus group interviews to explore the user experiences of PPI. Methods A three-phase multi-method study was conducted. In phase one, the PEIRS-22 was translated, linguistically validated and culturally adapted to Danish. In phase two individuals from three distinct cancer patient advisory boards responded to the Danish version of PEIRS-22 to assess its applicability. Three focus group interviews were c...
• The continuous involvement of end users and the iterative modifications on MedFC produced an ap... more • The continuous involvement of end users and the iterative modifications on MedFC produced an app with an excellent usability. • A high level of acceptability of the app was demonstrated in this study. • The pilot feasibility study showed that it would be feasible to use MedFC in routine clinical practice.
Background The purpose of this case study is to describe how a vulnerable group of patients can b... more Background The purpose of this case study is to describe how a vulnerable group of patients can be included in research. The activities, challenges, lessons learned, and reflections on the importance of patient involvement in research for 5 years (2016-2021) at the adolescent and young adult (AYA) cancer support facility, Kraeftvaerket, are reported. Main body A patient panel at Kraeftvaerket, the Youth Panel has multiple aims, one of which is the ability to perform patient involvement in research, with the goal of achieving research of high quality. We here describe how Patient and Public involvement (PPI) can be customized to AYAs in a cancer trajectory, who face many challenges, including those in the physical, psychological, and social domains. During 2016-2021, Youth Panel meetings were planned every third month but interrupted during the COVID-19 pandemic. With a flexible structure and a dynamic panel including 10-15 varying AYAs in a cancer trajectory, engagement and involvement have been maintained. Eight research topics were investigated, seven of which were discussed and confirmed to be important by the Youth Panel. Out of eight topics, three were raised by patients, and five by researchers. One was not discussed due to COVID-19. Some of the challenges we have experienced were related to the flexible meeting structure and the differing expectations and priorities as well as the impact of COVID-19. However, we experienced that patient involvement is possible in the field of AYA oncology if a trusting environment is created. A key finding in our case study was, that without a national Danish PPI program and no defined international standard for PPI in AYA cancer research yet, we were able to give patients the possibility to give input to researchers on topics where research is missing. Conclusion Here, we demonstrate how patient involvement in research has been performed at an AYA cancer facility, Kraeftvaerket, during a 5-year period. We encourage others to perform patient-involving research, even in challenging populations. Ideally this must follow international standards for PPI in AYA cancer research when such exist to improve research with crucial insight from patients.
Background As a first step to reach consensus on the key constructs and outcomes in neuro-oncolog... more Background As a first step to reach consensus on the key constructs and outcomes in neuro-oncology caregiver research, we performed a systematic review to evaluate the constructs that are being evaluated in research studies and how these have been assessed. Methods All peer-reviewed publications with primary data reporting on outcomes of family caregivers of adult primary brain tumor patients were eligible. Electronic databases PubMed/Medline, Embase, Web of Science, Emcare, Cochrane Library, and PsycINFO were searched up to September 2021. Using Covidence, title and abstract screening, full-text review, and data extraction were done by two researchers independently, with a third guiding consensus. Constructs as reported in each study, and how these were assessed were the primary result. Results Searches yielded 1090 unique records, with 213 remaining after title/abstract screening. Of these, 157 publications met inclusion criteria, comprising 120 unique studies. These originated from 18 countries and were published between 1996 and 2022. Most were observational (75%) cross-sectional (61%) studies, reporting on quantitative methods (62%). Twenty-seven different constructs were assessed and mapped along the Caregiver Health Model (CGHM) categories, namely, caregiver health, needs, tasks, beliefs and attitudes, and environment. Seventeen questionnaires were used >2 times to measure the same construct, with the vast majority of questionnaires only used across one or two studies. Conclusions Neurooncology caregiving research is a field gaining traction, but lags behind in clear definition of key constructs, and consistency in assessment of these constructs. Developing consensus or guidance will improve comparability of studies, meta-analyses, and advance the science more quickly.
Background High-grade gliomas are aggressive and life-threatening brain tumors. At the time of re... more Background High-grade gliomas are aggressive and life-threatening brain tumors. At the time of recurrence, the patients and their families need to decide on future treatment. None of the treatment options are curative, and tradeoffs between benefits and harms must be made. This study aimed to explore the patients’ and family members’ decisional needs when making the decision. Methods We performed semi-structured individual interviews with patients and family members to explore their experiences during the decision making. A phenomenological hermeneutical analysis was conducted. Results A total of 15 patients and 14 family members aged 22-79 years participated in the study. Most of the family members were partners to the patient. The findings were centered around three interrelated and concurrently occurring themes: (I) A patient- and family-centered decision making, including the subtheme of being a supportive family member; (II) Balanced information and a trustful professional encounter; and (III) The value of hope. We found that both the patients and family members preferred to be involved in the decision making and that a trustful relationship with the surgeon, balanced and tailored information, and sufficient time to make the decision were essential. The experience of hope had a significant influence on patients’ decisions. Conclusion This study found that patient and family involvement, balanced information, and hope were the primary decisional needs of patients and family members at the time of recurrent high-grade glioma. Patients and family members can have different decisional needs, making individual needs assessment essential to decisional support.
Objectives The aim of this study was to evaluate onestop surgery (OSS) for carpal tunnel syndrome... more Objectives The aim of this study was to evaluate onestop surgery (OSS) for carpal tunnel syndrome (CTS) regarding symptom relief and patient satisfaction. OSS in our setting means only one visit to the hospital for surgery and no hospital appointments for preassessment or followup. We hypothesised that relief of symptoms with OSS is comparable with that in non-OSS patients reported in the literature. Design This is a long-term retrospective follow-up study (56.5 months) of 1003 patients referred for CTS and discharged with or without surgery from an OSS clinic. Of the original cohort, 671 patients completed the long-term follow-up telephone interview. results Two-thirds of the patients were free of even minor symptoms following surgery. The symptom relief and patient satisfaction in this study were comparable with results in non-OSS patients reported in the literature. conclusion The implementation of a clinical pathway and OSS for the management of CTS was safe with good longterm symptom relief and high patient satisfaction.
Abstract The diagnosis of a high-grade glioma usual is followed by functional impairment(s), cogn... more Abstract The diagnosis of a high-grade glioma usual is followed by functional impairment(s), cognitive decline and an impaired psycho-social well-being. This might well have a significant and negative impact on the health related quality of life. The purpose of this study was to explore physical activity levels, prevalence and severity of anxiety and depressive symptoms and health-related quality of life among patients with a highgrade glioma. This paper is based on a longitudinal mixed methods study. Patients (n = 30) completed questionnaires at 5 time points from time of diagnosis until the final follow-up after 1 year. Scores of Karnofsky Performance Status (KPS), physical activity, anxiety and depression and health-related quality of life (FACT-Br) are obtained. Patients’ physical activity level and KPS decrease during the disease- and treatment trajectory. The majority of patients did not report any depressive symptoms, eight individuals (26.7 %) being depressed at various time points. Among a sub-group of participants who completed all study requirements for the entire study period the level of anxiety decreased significantly during the study. The FACT-Br sub-scale of emotional well-being increased significant, indicating a better HRQOL attend of followup. The diagnosis of a HGG leads to an ongoing functional decline measured as a decline of the KPS and a reduced physical activity during leisure time. Supportive care combined with rehabilitative and palliative approaches might well be valuable along the trajectory especially during the post-surgery period when anxiety is at its highest peak.
Collaboration on patient and public involvement (PPI) between public and research communities ful... more Collaboration on patient and public involvement (PPI) between public and research communities fulfils a societal obligation to involve the public in setting the research agenda
Background. Shared decision making (SDM) has proven to be a valuable approach in different patien... more Background. Shared decision making (SDM) has proven to be a valuable approach in different patient populations when treatment decisions are called for. Along the disease trajectory of high-grade glioma (HGG), patients are presented with a series of treatment decisions. At the same time, HGG patients often experience cognitive deterioration and reduced decision-making capacity. This study aimed to review the current knowledge about shared decision making from the perspective of the HGG patient. Methods. Systematic searches were performed in MEDLINE, CINAHL, PsycINFO, and EMBASE. Studies were reviewed against the inclusion criteria and assessed for methodological quality. Descriptive data from the included studies were extracted and a narrative synthesis of the findings was performed. Results. The searches resulted in 5051 original records. Four studies involving 178 HGG patients fulfilled the inclusion criteria. The narrative synthesis revealed that most HGG patients in the included studies appreciated an SDM approach and that sufficient information and involvement increased patients' emotional well-being. The use of a patient decision aid showed the potential to increase knowledge, decrease uncertainty, and affect the treatment decision making of HGG patients. Conclusion. The results indicate that many HGG patients prefer an SDM approach and that SDM can lead patients toward improved emotional well-being. The evidence is weak, however, and firm conclusions and practice guidelines concerning SDM in HGG patients cannot be made. Future research is warranted to improve decision support for HGG patients.
BackgroundThe purpose of antineoplastic treatment of high-grade glioma (HGG) is to achieve progre... more BackgroundThe purpose of antineoplastic treatment of high-grade glioma (HGG) is to achieve progression-free survival with delayed neurological and cognitive deterioration. Health-related quality of life (HRQOL) has become increasingly important next to more traditional outcome measures such as progression-free survival. However, the clinical outcome of long-term, HGG survivors and their caregivers’ quality of life is poorly understood.ObjectiveThis study aims to address HRQOL and perspectives on the daily life experiences of long-term survivors (LTS) with HGG and their caregivers.MethodsThis mixed-methods study applies a convergent design using identical sampling. Separate telephone interviews with patients diagnosed for more than 3 years and their caregivers were conducted. Patients filled out self-reported questionnaires; the Hospital Anxiety and Depression Scale, the Functional Assessment of Cancer Therapy (FACT), General and Brain (FACT-Br), and the Leisure Time Physical Activity Questionnaire.ResultsThree themes shared by patients and their caregivers were identified: searching for meaningful activities, selecting information that enhances self-management strategies and protection for safety reasons. Ten per cent showed moderate depressive symptoms, which is lower compared with the newly diagnosed. The HRQOL scores seem to be rated higher than the normative sample. The FACT-Br total score indicated that a previously identified significant increase in the emotional well-being of 1-year survivors was the same or improved. A central finding is that the LTS expressed frustration and sadness due to their reduced ability to manage work and daily life activities. Caregivers are challenged throughout the entire trajectory, and patient safety issues are a key concern for them.ConclusionsThe LTS desire participation in satisfying, meaningful activities that consider their cognitive and physical capacities. Advance care planning must be a key component in future research, as discussing life strategies can enhance positive beliefs, which are apparently imperative to their well-being.Trial registration numberClinical Trial.gov:NCT02965144
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Papers by Karin Piil