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1دورية أكاديمية
المؤلفون: Jane Hybschmann, Jette Led Sørensen, Jakob Thestrup, Helle Pappot, Kirsten Arntz Boisen, Thomas Leth Frandsen, Line Klingen Gjærde
المصدر: Research Involvement and Engagement, Vol 10, Iss 1, Pp 1-9 (2024)
مصطلحات موضوعية: Patient-reported experience measure, Child participation, Adolescent participation, Research involvement, Patient and public involvement, Co-creation, Medicine, Medicine (General), R5-920
الوصف: Abstract Background Children and adolescents have the right to participate in decisions concerning their health and express their views, also regarding hospital experiences. Patient-reported experience measures (PREMs) are valuable tools for systematically incorporating patient voices into healthcare systems. New developments have focused on PREMs for children and adolescents, though they are more commonly used in adults. A recent systematic review mapping their use for children and adolescents indicates a growing interest in this area. However, most PREMs are completed by proxy, in this case parents, so they do not necessarily reflect children’s experiences or align with their rights. Innovation is required to support and engage children and adolescents in responding to these types of questionnaires. Methods Collaborating with children and adolescents (4–17 years), the primary aim of this study is to develop and validate the tool MyHospitalVoice containing digital and developmentally appropriate PREMs. The secondary aim is to document and evaluate the approaches used to involve children and adolescents and to assess the impact of their involvement. Based on the European Organisation for Research and Treatment of Cancer framework, we will divide its development and validation into four phases. First, we will discuss PREM items with children and adolescents, who will select and prioritise what they perceive as most important. Second, we will create items targeting different age groups (4–7, 8–12, and 13–17 years) and design a responsive digital interface with child and youth friendly ways of responding to the questionnaires. Third, we will explore how children and adolescents perceive MyHospitalVoice using cognitive interviewing techniques and other age-appropriate methods. Last, we will pilot test MyHospitalVoice to explore patient experiences and response rates. In each phase, children and adolescents will play an active role. We will involve young adults as peer researchers in the project group to ensure that their perspectives are part of the decision-making process. Discussion This project will contribute to research on co-creating with children and adolescents and enhance our understanding of their patient experiences. A validated tool like MyHospitalVoice can help improve quality of care by translating the needs and preferences of children and adolescents into clinical practice.
وصف الملف: electronic resource
العلاقة: https://doaj.org/toc/2056-7529Test
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2دورية أكاديمية
المؤلفون: Emma Balch Steen-Olsen, Helle Pappot, Maiken Hjerming, Signe Hanghoej, Cecilie Holländer-Mieritz
المصدر: JMIR mHealth and uHealth, Vol 12, Pp e50620-e50620 (2024)
مصطلحات موضوعية: Information technology, T58.5-58.64, Public aspects of medicine, RA1-1270
الوصف: Abstract BackgroundWearables that measure vital parameters can be potential tools for monitoring patients at home during cancer treatment. One type of wearable is a smart T-shirt with embedded sensors. Initially, smart T-shirts were designed to aid athletes in their performance analyses. Recently however, researchers have been investigating the use of smart T-shirts as supportive tools in health care. In general, the knowledge on the use of wearables for symptom monitoring during cancer treatment is limited, and consensus and awareness about compliance or adherence are lacking. ObjectivesThe aim of this study was to evaluate adherence to and experiences with using a smart T-shirt for the home monitoring of biometric sensor data among adolescent and young adult patients undergoing cancer treatment during a 2-week period. MethodsThis study was a prospective, single-cohort, mixed methods feasibility study. The inclusion criteria were patients aged 18 to 39 years and those who were receiving treatment at Copenhagen University Hospital - Rigshospitalet, Denmark. Consenting patients were asked to wear the Chronolife ResultsA total of 10 patients were included. The number of days with wear times of >8 hours during the study period (14 d) varied from 0 to 6 (mean 2 d). Further, 3 patients had a mean wear time of >8 hours during each of their days with data registration. The number of days with any data registration ranged from 0 to 10 (mean 6.4 d). The thematic analysis of interviews pointed to the following three main themes: (1) the smart T-shirt is cool but does not fit patients with cancer, (2) the technology limits the use of the smart T-shirt, and (3) the monitoring of data increases the feeling of safety. Results from the questionnaire showed that the patients generally had confidence in the device. ConclusionsAlthough the primary end point was not reached, the patients’ experiences with using the smart T-shirt resulted in the knowledge that patients acknowledged the need for new technologies that improve supportive cancer care. The patients were positive when asked to wear the smart T-shirt. However, technical and practical challenges in using the device resulted in low adherence. Although wearables might have potential for home monitoring, the present technology is immature for clinical use.
وصف الملف: electronic resource
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3دورية أكاديمية
المؤلفون: Dag Rune Stormoen, Lise Høj Omland, Kent William Mouw, Zoltan Szallasi, Sisse Rye Ostrowski, Susanne Dam Nielsen, Helle Pappot
المصدر: Uro, Vol 4, Iss 1, Pp 1-11 (2024)
مصطلحات موضوعية: urinary tract carcinoma, bladder cancer, immunotherapy, response markers, innate immune system, trueculture, Diseases of the genitourinary system. Urology, RC870-923
الوصف: Background: This prospective pilot study explored the potential of the innate immune system’s response to cancer-related immuno-stimulants as a predictive biomarker for Immune Checkpoint Inhibitor (ICI) effectiveness, using pembrolizumab-treated metastatic urothelial tract cancer (mUTC) patients as the study population. Methods: We included ten mUTC patients and assessed their innate immune responses before the first and second pembrolizumab cycles with the TruCulture® immunoassay. We also executed survival analysis and compared cytokine release. Results: R848-induced IFNα and HKCA-induced IL-10 values decreased in patients with disease progression (n = 7), while these values increased in non-progressing patients (n = 3), denoting a significant difference (p = 0.00192 and p = 0.00343, respectively). Further, an increased R848-induced IFNα response correlated with extended survival (log-rank p-value of 0.048). Conclusion: Our small study identified distinct immune response patterns following pembrolizumab’s first cycle in mUTC patients, hypothesizing the potential of an increased R848-induced IFNα response for improved survival outcomes. Further confirmatory studies are in progress.
وصف الملف: electronic resource
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4دورية أكاديمية
المؤلفون: Mille Guldager Christiansen, Helle Pappot, Clayon Hamilton, Trine Lund-Jacobsen, Anne Wilhøft Kristensen, Sara Nordentoft, Beverley Lim Høeg, Pernille Bidstrup, Iben Husted Nielsen, Jane Ulstrup, Anouk Kirsten Trip, Mary Jarden, Karin Piil
المصدر: Research Involvement and Engagement, Vol 9, Iss 1, Pp 1-13 (2023)
مصطلحات موضوعية: Patient and Public Involvement, Patient engagement, Patient Engagement in Research Scale, Focus groups, PEIRS-22, Danish, Medicine, Medicine (General), R5-920
الوصف: Abstract 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 patient cancer advisory boards responded to the Danish version of PEIRS-22 to assess its applicability. Three focus group interviews were conducted in phase three, involving individuals from three patient cancer advisory boards. Results The translation process resulted in a Danish version of PEIRS-22, conceptually and culturally equivalent to the English version. Overall, among individuals of the three advisory boards (n = 15) the applicability was found to be satisfactory, with no missing data and all items completed. The total PEIRS-22 score among the three advisory boards was 85.2 out of a possible 100, with higher scores indicating greater meaningful involvement. A nested sample of the three patient cancer advisory boards (n = 9) participated in focus group interviews. The analysis yielded four themes: (1) The Danish PEIRS-22 captured the intended cultural meaning and contributed to self-reflection, (2) Internal motivation is a driver for involvement (3), Involvement brought a personal sense of empowerment and (4) Meaningful involvement collaborations are fostered by a trustful atmosphere. Conclusions The PEIRS-22 questionnaire has been translated, linguistically validated, and culturally adapted into Danish. We propose that the PEIRS-22 is now ready for use in Danish populations. This study provides a Danish version of the questionnaire that can be used to develop patient-centred practices and foster meaningful involvement and collaborations between patients and researchers in the field of cancer research in Denmark. Personal benefits of participating in PPI can vary, and we recommend using PEIRS-22 in conjunction with a qualitative approach to better explore perspectives on meaningful involvement. Trial registration The study was registered prospectively on October 22, 2022, by the Danish Data Protection Agency (jr. nr. P-2022–528).
وصف الملف: electronic resource
العلاقة: https://doaj.org/toc/2056-7529Test
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5دورية أكاديمية
المؤلفون: Aurel Prosz, Haohui Duan, Viktoria Tisza, Pranshu Sahgal, Sabine Topka, Gregory T. Klus, Judit Börcsök, Zsofia Sztupinszki, Timothy Hanlon, Miklos Diossy, Laura Vizkeleti, Dag Rune Stormoen, Istvan Csabai, Helle Pappot, Joseph Vijai, Kenneth Offit, Thomas Ried, Nilay Sethi, Kent W. Mouw, Sandor Spisak, Shailja Pathania, Zoltan Szallasi
المصدر: Scientific Reports, Vol 13, Iss 1, Pp 1-10 (2023)
الوصف: Abstract Due to a demonstrated lack of DNA repair deficiencies, clear cell renal cell carcinoma (ccRCC) has not benefitted from targeted synthetic lethality-based therapies. We investigated whether nucleotide excision repair (NER) deficiency is present in an identifiable subset of ccRCC cases that would render those tumors sensitive to therapy targeting this specific DNA repair pathway aberration. We used functional assays that detect UV-induced 6–4 pyrimidine-pyrimidone photoproducts to quantify NER deficiency in ccRCC cell lines. We also measured sensitivity to irofulven, an experimental cancer therapeutic agent that specifically targets cells with inactivated transcription-coupled nucleotide excision repair (TC-NER). In order to detect NER deficiency in clinical biopsies, we assessed whole exome sequencing data for the presence of an NER deficiency associated mutational signature previously identified in ERCC2 mutant bladder cancer. Functional assays showed NER deficiency in ccRCC cells. Some cell lines showed irofulven sensitivity at a concentration that is well tolerated by patients. Prostaglandin reductase 1 (PTGR1), which activates irofulven, was also associated with this sensitivity. Next generation sequencing data of the cell lines showed NER deficiency-associated mutational signatures. A significant subset of ccRCC patients had the same signature and high PTGR1 expression. ccRCC cell line-based analysis showed that NER deficiency is likely present in this cancer type. Approximately 10% of ccRCC patients in the TCGA cohort showed mutational signatures consistent with ERCC2 inactivation associated NER deficiency and also substantial levels of PTGR1 expression. These patients may be responsive to irofulven, a previously abandoned anticancer agent that has minimal activity in NER-proficient cells.
وصف الملف: electronic resource
العلاقة: https://doaj.org/toc/2045-2322Test
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6دورية أكاديمية
المؤلفون: Trine Lund-Jacobsen, Peter Schwarz, Gabriella Martino, Helle Pappot, Karin Piil
المصدر: JMIR Research Protocols, Vol 13, p e49549 (2024)
مصطلحات موضوعية: Medicine, Computer applications to medicine. Medical informatics, R858-859.7
الوصف: BackgroundPatients with postmenopausal nonmetastatic estrogen receptor–positive breast cancer often experience a reduced quality of life after primary treatment. The disease and treatment trajectory consists of surgery followed by chemotherapy or radiation therapy. Upon this, maintenance hormone therapy with an aromatase inhibitor can result in several physical and psychosocial symptoms. Optimal symptom control during maintenance therapy is central to maintaining the patient’s quality of life. ObjectiveThis study aims to (1) develop an electronic symptom management tool for patients with postmenopausal early breast cancer receiving maintenance aromatase inhibitors with an endocrine aspect and (2) assess the feasibility, acceptability, and usability of the pilot version of the Bone@BC app. Furthermore, longitudinally, symptom prevalence and quality of life for patients with postmenopausal nonmetastatic estrogen receptor–positive breast cancer will be explored. MethodsThis study follows a multistage research plan. In stage 1, a systematic literature review to establish an overview of aromatase inhibitor–related symptoms reported by postmenopausal women with nonmetastatic estrogen receptor–positive breast cancer will be completed. In stage 2, a comprehensive overview of symptoms related to aromatase inhibitors (letrozole, exemestane, and anastrozole) will be performed (eg, by reviewing medical leaflets and guidelines). In stage 3, an electronic app with a user-friendly Patient Concern Inventory list to comprise symptoms and concerns will be developed. Last, in stage 4, a convergent mixed methods feasibility study of the pilot version of the Bone@BC app will be conducted. A total of 45 patients with postmenopausal nonmetastatic estrogen receptor–positive breast cancer will use the app daily for symptom identification and respond to 6 serial patient-reported outcome measurements for 12 weeks. Finally, semistructured interviews will be performed. The primary outcome includes consent rate, attrition rate, retention rates, technical issues, and adherence, assessed using preestablished criteria on feasibility and a mixed methods approach for exploring acceptability. A patient advisory board consisting of 5 women with breast cancer is recruited to include their perspectives and experiences in the planning, organization, implementation, and dissemination of the research throughout the project. ResultsAt the time of submitting this paper (January 2024), a total of 23 patients have been included in the stage 2 medical audit over the recruitment period of 3 months (November 2022 to February 2023), and 19 patients have been enrolled in stage 2, the semistructured patient interviews. ConclusionsThis protocol describes a study investigating the feasibility, acceptability, and usability of the symptom management tool Bone@BC developed for patients with breast cancer with an endocrine aspect. Trial RegistrationClinicalTrails.gov NCT05367830; https://clinicaltrials.gov/ct2/show/NCT05367830Test International Registered Report Identifier (IRRID)DERR1-10.2196/49549
وصف الملف: electronic resource
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7دورية أكاديمية
المؤلفون: Gry Assam Taarnhøj, Christoffer Johansen, Andreas Carus, Rikke Hedegaard Dahlrot, Line Hammer Dohn, Niels Henrik Hjøllund, Mark Bech Knudsen, Anders Tolver, Henriette Lindberg, Helle Pappot
المصدر: Journal of Patient-Reported Outcomes, Vol 7, Iss 1, Pp 1-13 (2023)
مصطلحات موضوعية: Patient-reported outcomes, Bladder cancer, Urothelial cancer, Supportive care, Quality of life, Public aspects of medicine, RA1-1270
الوصف: Abstract Background Patient-reported outcomes (PROs) are getting widely implemented, but little is known of the impact of applying PROs in specific cancer diagnoses. We report the results of a randomized controlled trial (RCT) of the active use of PROs in patients with locally advanced or metastatic bladder cancer (BC) undergoing medical oncological treatment (MOT) with focus on determining the clinical effects of using PROs during chemo- or immunotherapy compared to standard of care. Methods We recruited patients from four departments of oncology from 2019 to 2021. Inclusion criteria were locally advanced or metastatic BC, initiating chemo- or immunotherapy. Patients were randomized 1:1 between answering selected PRO-CTCAE questions electronically once weekly with a built-in alert-algorithm instructing patients of how to handle reported symptoms as a supplement to standard of care for handling of side effects (intervention arm (IA)) vs standard procedure for handling of side effects (control arm (CA)). No real-time alerts were sent to the clinic when PROs exceeded threshold values. Clinicians were prompted to view the completed PROs in the IA at each clinical visit. The co-primary clinical endpoints were hospital admissions and treatment completion rate. Secondary endpoints were overall survival (OS), quality of life (EORTC’s QLQ-C30 and QLQ-BLM30) and dose reductions. Results 228 patients with BC were included, 76% were male. 141 (62%) of the patients had metastatic disease. 51% of patients in the IA completed treatment vs. 56% of patients in the CA, OR 0.83 (95% CI 0.47–1.44, p = 0.51). 41% of patients in the IA experienced hospitalization vs. 32% in the CA, OR 1.48 (95% CI 0.83–2.65, p = 0.17). OS was comparable between the two arms (IA: median 22.3mo (95% CI 17.0-NR) vs. CA: median 23.1mo (95% CI 17.7-NR). Patient and clinician compliance was high throughout the study period (80% vs 94%). Conclusions This RCT did not show an effect of PRO on completion of treatment, hospitalizations or OS for BC patients during MOT despite a high level of patient and clinician compliance. The lack of real-time response to alerts remains the greatest limitation to this study.
وصف الملف: electronic resource
العلاقة: https://doaj.org/toc/2509-8020Test
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8دورية أكاديمية
المؤلفون: Line Bentsen, Signe Hanghøj, Maiken Hjerming, Mette Buur Bergmann, Marianne Thycosen, Anette Borup, Camilla Larsen, Helle Pappot
المصدر: JMIR Cancer, Vol 9, p e49735 (2023)
مصطلحات موضوعية: Neoplasms. Tumors. Oncology. Including cancer and carcinogens, RC254-282
الوصف: BackgroundAdolescents and young adults often experience existential concerns in addition to side effects during a cancer trajectory, which they often carry alone. Thus, cohesion with other adolescents and young adults with cancer is essential but difficult due to the relatively small, widely dispersed nationwide population. In cocreation, a smartphone app has been developed and includes an information bank, a symptom tracker, and a social community platform, aiming to improve the quality of life (QoL) in this patient group. ObjectiveThis nationwide, multicenter study aimed to investigate the QoL in adolescents and young adults undergoing a cancer trajectory as they used the app for 6 weeks. MethodsVia youth support initiatives, participants were recruited from hospitals in all regions of Denmark. Inclusion criteria were patients with cancer aged 15-29 years who either initiated any cancer treatment or started follow-up after cancer treatment within 30 days. Participants used the adolescents and young adults cancer app for 6 weeks. Before and after the 6 weeks of app use, they completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30). The participants were divided into a treatment and a follow-up group for analysis. A high score for a functional scale or the global health or overall QoL represents a high or healthy level of functioning or high QoL, respectively; however, a high score for a symptom scale or item represents a high level of symptomatology. ResultsOverall, 81 participants were recruited. However, 4 participants did not answer the questionnaire and 6 participants did not use the app. In the treatment group (n=36), significant improvement was found in 2 domains: “Role functioning” (baseline median 33.33, IQR 16.67-83.33 vs 6 weeks median 66.67, IQR 33.33-83.33; P=.04) and “Pain” (baseline median 33.33, IQR 16.67-50.00 vs 6 weeks median 16.67, IQR 0.00-33.33; P=.04). The “Global health/Overall QoL” scale remained stable (baseline median 58.33, IQR 45.83-77.08 vs 6 weeks median 62.50, IQR 41.67-75.00; P=.25). In the follow-up group (n=35), significant improvement was found in 3 domains: “Physical functioning” (baseline median 79.23, IQR 73.33-93.33 vs 6 weeks median 82.86, IQR 73.33-100.00; P=.03), “Cognitive functioning” (baseline median 62.38, IQR 50.00-83.33 vs 6 weeks median 69.52, IQR 50.00-100.00; P=.02), and “Social functioning” (baseline median 76.19, IQR 50.00-100.00 vs 6 weeks median 85.71, IQR 83.33-100.00; P=.05), as well as in the “Global health/Overall QoL” scale (baseline median 57.14, IQR 83.33-100.00 vs 6 weeks median 75.0, IQR 62.91-85.73; P
وصف الملف: electronic resource
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9دورية أكاديمية
المؤلفون: Mille Guldager Christiansen, Helle Pappot, Pernille Tine Jensen, Mansoor Raza Mirza, Mary Jarden, Karin Piil
المصدر: Journal of Patient-Reported Outcomes, Vol 7, Iss 1, Pp 1-13 (2023)
مصطلحات موضوعية: Item selection, Patient-reported outcomes, PRO, Ovarian cancer, Endometrial cancer, PRO-CTCAE library, Public aspects of medicine, RA1-1270
الوصف: Abstract Background Women with endometrial or ovarian cancer experience a variety of symptoms during chemotherapy. Patient-Reported outcomes (PROs) can provide insight into the symptoms they experience. A PRO tool tailored to this patient population can help accurately monitor adverse events and manage symptoms. The objective of this study was to identify items in the National Cancer Institute’s measurement system Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE®) appropriate for use in a PRO tool for a population of women with endometrial or ovarian cancer undergoing treatment with taxanes (paclitaxel or docetaxel) in combination with carboplatin. Methods A two-phase, sequential multi-methods approach was applied. In phase one, a comprehensive literature search was done to map the toxicity of the applied chemotherapeutics and phase III clinical studies. Phase two, which comprised selecting the PRO-CTCAE items, included discussions with and feedback from a patient advisory board, an additional literature search, and focus group interviews with senior oncologists and specialized oncology nurses. A national expert panel facilitated both phases in terms of carefully select items from the PRO-CTCAE library. Results Phase one identified 18 symptoms and phase two, three additional ones, leading to the inclusion of 21 PRO-CTCAE symptoms in the final PRO tool. Since PRO-CTCAE also contains one to three sub-questions on the frequency, severity, and interference with daily activities of symptoms, there were 44 potential items. Conclusions This study describes taking a multi-method approach to selecting items from the PRO-CTCAE library for use in a population of women with endometrial or ovarian cancer undergoing chemotherapy. By systematically combining diverse approaches, we carefully selected 21 clinically relevant symptoms covered by 44 items in the PRO-CTCAE library. Future studies should investigate the psychometric properties of this PRO tool for women with endometrial or ovarian cancer.
وصف الملف: electronic resource
العلاقة: https://doaj.org/toc/2509-8020Test
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10دورية أكاديمية
المؤلفون: Helle Pappot, Sara Kaa Meier, Maiken Hjerming, Karin Piil, Signe Hanghøj
المصدر: Research Involvement and Engagement, Vol 9, Iss 1, Pp 1-10 (2023)
مصطلحات موضوعية: Medicine, Medicine (General), R5-920
الوصف: Abstract 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, Kræftværket, are reported. Main body A patient panel at Kræftværket, 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, Kræftværket, 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.
وصف الملف: electronic resource
العلاقة: https://doaj.org/toc/2056-7529Test
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