ecancermedicalsciencePub Date : 2024-07-30eCollection Date: 2024-01-01DOI: 10.3332/ecancer.2024.1732
Santiago Leandro Escobar-Dávila, Giovanna Patricia Rivas-Tafurt, Luis Álvaro Melo-Burbano, Luis Miguel Osorio-Toro, Edith Norela Benítez-Escobar, Duván Arley Galindes-Casanova, Jorge Hernán Izquierdo-Loaiza, Rodrigo Andrés Cárdenas-Perilla, Carlos Orozco-de la Hoz
{"title":"Report of Henoch-Schönlein purpura associated with trastuzumab emtansine.","authors":"Santiago Leandro Escobar-Dávila, Giovanna Patricia Rivas-Tafurt, Luis Álvaro Melo-Burbano, Luis Miguel Osorio-Toro, Edith Norela Benítez-Escobar, Duván Arley Galindes-Casanova, Jorge Hernán Izquierdo-Loaiza, Rodrigo Andrés Cárdenas-Perilla, Carlos Orozco-de la Hoz","doi":"10.3332/ecancer.2024.1732","DOIUrl":"https://doi.org/10.3332/ecancer.2024.1732","url":null,"abstract":"<p><p>Vasculitides are a set of pathologies that can affect one or several organs, in the short and long term. They are associated with various etiologies, among which paraneoplastic syndromes and medications stand out. Although everyday cancer therapies are more directed against a therapeutic target, their use can cause a wide spectrum of complications. Some treatments against human epidermal growth factor 2 (HER2) have been associated with cutaneous and pulmonary vasculitis. We present the first case of Henoch-Schönlein purpura associated with the use of T-DM1 in a patient with HER2 breast cancer.</p>","PeriodicalId":11460,"journal":{"name":"ecancermedicalscience","volume":"18 ","pages":"1732"},"PeriodicalIF":1.2,"publicationDate":"2024-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11484666/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142460668","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
ecancermedicalsciencePub Date : 2024-07-30eCollection Date: 2024-01-01DOI: 10.3332/ecancer.2024.1733
Rahat Ul Ain, Mahwish Faizan
{"title":"Low incidence of primary immunodeficiency-associated cancers in children at a tertiary care pediatric hospital in Pakistan: a blessing in disguise or wet behind the ears?","authors":"Rahat Ul Ain, Mahwish Faizan","doi":"10.3332/ecancer.2024.1733","DOIUrl":"https://doi.org/10.3332/ecancer.2024.1733","url":null,"abstract":"<p><p>Scarce data is available regarding primary immunodeficiency-associated cancers in children in low-middle-income countries. This study aimed to determine the incidence, clinical features and outcomes of primary immunodeficiencies (PIDs)-associated cancers in children presenting to Pakistan's largest public-sector specialised pediatric oncology center. Among 5,748 children with cancers registered over 5 years, only eight patients were found to have PID-associated pediatric malignancies with an incidence of 1.4 per 1,000 cases. The median age at the time of diagnosis was 6.5 years with a male-to-female ratio of 7:1. Only four types of PIDs were found to be associated with cancer in children at our center: Ataxia Telangiectasia in 37.5% (<i>n</i> = 3), hyper-IgE syndrome and IgG deficiency in 25% (each <i>n</i> = 2) and one case (12.5%) of common variable immune deficiency. Six different types of pediatric cancers were associated with PID with a predisposition towards hematological malignancies (<i>n</i> = 7, 87.5%). Only two patients (25%) survived. The median survival of the cohort was 3.5 months. Infection-related mortality was the cause of death in four patients (66%), and the type of PID was the only statistically significant factor associated with the outcome. It is concluded that a lesser proportion of PID-associated pediatric cancers are found in our center as compared to the reported data from high-income countries. PID-associated cancers in children have an abysmal prognosis and infection-related mortality is the major cause of treatment failure. Sensitisation of oncologists to look for any underlying PID, the introduction of PID-screening programs in children and consideration of PID-associated malignancies as a high-risk group for treatment may help improve the outcomes.</p>","PeriodicalId":11460,"journal":{"name":"ecancermedicalscience","volume":"18 ","pages":"1733"},"PeriodicalIF":1.2,"publicationDate":"2024-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11484680/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142460644","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Reduced frequency dosing of osimertinib in EGFR-mutant non-small cell lung carcinoma: real world data.","authors":"Vanita Noronha, Harsh Sahu, Akhil Kapoor, Vijay Patil, Nandini Menon, Minit Shah, Dilan Davis, Rumeli Roy, Srigadha Vivek, Amit Janu, Rajiv Kaushal, Kumar Prabhash","doi":"10.3332/ecancer.2024.1721","DOIUrl":"10.3332/ecancer.2024.1721","url":null,"abstract":"<p><strong>Introduction: </strong>Osimertinib is more efficacious and as safe as first-generation epidermal growth factor receptor (EGFR)-directed tyrosine kinase inhibitors. However, osimertinib is not affordable for most patients in developing nations. Moreover, the minimum biologically effective dose of osimertinib may be less than the approved dose.</p><p><strong>Materials and methods: </strong>This was a retrospective observational multicentric study aimed to describe the efficacy (objective response rate (ORR), disease control rate (DCR), progression free survival (PFS), overall survival (OS)) and toxicity of osimertinib 80 mg orally administered less frequently than daily (ranging from every other day to once-a-week) in patients with EGFR-mutated non-small cell lung cancer.</p><p><strong>Results: </strong>Between January 2021 and August 2023, we enrolled 22 patients. Six received osimertinib 80 mg once-a-week, nine received 80 mg once-in-3-days and seven received 80 mg on alternate days. Responses included 0 complete responses, 7 (31.8%) partial responses, 9 (40.9%) stable disease and 5 (22.7%) progressive disease. ORR was 31.8%, and DCR was 72.7%. Median PFS was 9.2 months (95% confidence interval (CI) 2.9-15.7), and median OS was 17.8 months (95% CI, 3.2-32.6). In patients who received reduced frequency osimertinib in the second line and beyond, the ORR was 29.4%, DCR was 70.5%, median PFS was 5.9 months (95% CI, 1.1-10.6) and median OS was 17.6 months (95% CI, 2.9-32.2). Grade 3 and higher toxicities were noted in 8 (36.3%) patients.</p><p><strong>Conclusion: </strong>Less frequent dosing of osimertinib may be a valid treatment option, especially in the second line and beyond setting in patients who cannot afford full dose daily osimertinib. This may provide an additional treatment option with a similar toxicity profile as that of standard dose osimertinib.</p>","PeriodicalId":11460,"journal":{"name":"ecancermedicalscience","volume":"18 ","pages":"1721"},"PeriodicalIF":1.2,"publicationDate":"2024-06-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11254406/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141633012","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
ecancermedicalsciencePub Date : 2024-06-28eCollection Date: 2024-01-01DOI: 10.3332/ecancer.2024.1722
Johannes Matthias Weimer, Eva Kuhn, Michael Ludwig, Goodluck Lincoln Malle, Godfrid Kapipi, Valentin Sebastian Schäfer, Adnan Sadiq, Oliver Henke
{"title":"Effectiveness of an ultrasound basic cancer training program through on-site training and virtual case discussions in rural Tanzania: a proof-of-concept study.","authors":"Johannes Matthias Weimer, Eva Kuhn, Michael Ludwig, Goodluck Lincoln Malle, Godfrid Kapipi, Valentin Sebastian Schäfer, Adnan Sadiq, Oliver Henke","doi":"10.3332/ecancer.2024.1722","DOIUrl":"10.3332/ecancer.2024.1722","url":null,"abstract":"<p><strong>Introduction: </strong>Cancer rates are rising in low- and middle-income countries. While point-of-care ultrasound is now available globally and could serve to mitigate against this rise, its use in diagnosing cancers is inconsistent in lower-resourced healthcare contexts. This proof-of-concept study investigates the feasibility of an ultrasound training concept in a low-resource setting. It evaluates whether this educational concept led to improved knowledge and application of ultrasound diagnostics, cancer screening and staging and patient care.</p><p><strong>Material and methods: </strong>The curriculum was developed through expert exchange and is based on the World Health Organisation's Manual of Diagnostic Ultrasound. It consisted of two didactic components: an on-site training phase across 5 days for a total of 24 hours, and a digital follow-up phase involving the meeting of a bi-weekly tumor board online. The learning objectives of the on-site training were normal imaging and recognition of common pathologies of the abdominal organs, vessels, lymph nodes, female breasts and lungs. The virtual tumour boards met to discuss cases and ultrasound findings, thus aiding continuing professional development after the training sessions had concluded. The face-to-face course component was accompanied by tests given before and after training as well as an evaluation sheet (Likert-scale with 1 = 'completely/very good' and 7 'not at all/very poor').</p><p><strong>Results: </strong>Of 20 participants from a rural hospital in Tanzania, a total of 16 were included in the analysis (clinical officers <i>n</i> = 6; medical officers <i>n</i> = 10). A significant increase in knowledge (<i>p</i> < 0.01) was measured both in the subjective self-assessment and in the theoretical competence tests. In multivariate linear regression, the status 'medical officers yes' (<i>β</i> = 5.4; <i>p</i> = 0.04) had a significant influence on theory test results at T2. During the 24 virtual tumour board meetings, 28 cases were discussed and a continuous improvement in image acquisition quality was observed.</p><p><strong>Conclusion: </strong>The ultrasound education concept comes with a sustainable increase in clinical competence and improved oncological ultrasound screening locally. There is potential for the transfer of the concept to other locations, which can be explored in the future.</p>","PeriodicalId":11460,"journal":{"name":"ecancermedicalscience","volume":"18 ","pages":"1722"},"PeriodicalIF":1.2,"publicationDate":"2024-06-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11257097/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141723239","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Effect of age of initiation of mammography breast cancer screening.","authors":"Isabel Saffie-Vega, Sergio Muñoz-Navarro, Macarena Manríquez-Mimica, Jorge Sapunar-Zenteno","doi":"10.3332/ecancer.2024.1723","DOIUrl":"10.3332/ecancer.2024.1723","url":null,"abstract":"<p><strong>Introduction: </strong>Mammography is an excellent resource to reduce the burden of premature death associated with breast cancer; however, screening is only recommended between the ages of 50 and 69 years.</p><p><strong>General objective: </strong>To compare the frequency of suspicious and non-diagnostic mammograms for breast cancer when screening Chilean women between the ages of 40 and 50 years.</p><p><strong>Patients and methods: </strong>Cross-sectional study nested in a breast cancer screening programme in Chilean women >40 years old, conducted between 2017 and 2021. Demographic variables and risk factors are described. To establish the effect of age on screening, we calculated the number needed to screen for a Breast Imaging Reporting and Data Reporting System 4 or 5 mammogram when screening over 40 years or over 50 years.</p><p><strong>Results: </strong>We studied 137,690 women screened for breast cancer since the age of 40 years. The median age was 54 years (range 40-93 years). 64.7% of women were postmenopausal, 4.79% were nulliparous and 14% of post-menopausal women were receiving hormone replacement therapy. To find a suspicious mammogram, 170 women over 40 years and 149 women over 50 years would have to be screened.</p><p><strong>Conclusion: </strong>By changing the starting age of screening from 50 to 40 years 21 more women would have to be screened to detect a suspicious mammogram and if screened from age 50 and not from age 40 years 21% of total suspicious mammograms would remain unidentified.</p>","PeriodicalId":11460,"journal":{"name":"ecancermedicalscience","volume":"18 ","pages":"1723"},"PeriodicalIF":1.2,"publicationDate":"2024-06-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11254401/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141633009","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
ecancermedicalsciencePub Date : 2024-06-27eCollection Date: 2024-01-01DOI: 10.3332/ecancer.2024.1720
Raúl Sandoval-Ato, Patricia Coral-Gonzales, Sebastian Coronel-Arias, Luisa Espinoza-Mantilla, Grace Terrones-Chaparro, Victor Serna-Alarcón
{"title":"Clinical and radiological manifestations associated with triple-negative breast cancer in women from northern Peru. A case-control study.","authors":"Raúl Sandoval-Ato, Patricia Coral-Gonzales, Sebastian Coronel-Arias, Luisa Espinoza-Mantilla, Grace Terrones-Chaparro, Victor Serna-Alarcón","doi":"10.3332/ecancer.2024.1720","DOIUrl":"10.3332/ecancer.2024.1720","url":null,"abstract":"<p><strong>Objective: </strong>Triple-negative breast cancer (TNBC) has an aggressive clinical behaviour, with advanced stages at initial diagnostic evaluation, early recurrences and poor survival, so the purpose was to determine the clinical and radiological manifestations associated with TNBC.</p><p><strong>Materials and methods: </strong>A case-control study in women diagnosed with breast cancer from January 2015 to August 2022 at the 'Instituto Regional de Enfermedades Neoplásicas del Norte'. We classified cases (Triple Negative subtype) and controls (Luminal A, Luminal B and HER2) according to immunohistochemistry ical analysis. Bivariate and multivariate logistic regression models were used to calculate the odds ratio (OR) with their respective 95% confidence intervals (CIs).</p><p><strong>Results: </strong>The medical reports of 88 cases and 236 controls were reviewed. Cases were more likely to report pain (<i>p</i> = 0.001), nodules on ultrasound (<i>p</i> = 0.01) and mammography (<i>p</i> = 0.003), superior median size (<i>p</i> < 0.05), posterior enhancement (<i>p</i> = 0.001) and moderate density (<i>p</i> = 0.003). Multivariate analysis identified that TNBC was more likely to have a nodular type lesion by ultrasound (OR: 9.73, 95% CI: 1.10-86.16; <i>p</i> = 0.04), ultrasound lesion larger than 36 mm (OR: 4.99, 95% CI: 1.75-14.17; <i>p</i> = 0.003) and moderate density (OR: 3.83, 95% CI: 1.44-10.14; <i>p</i> = 0.007).</p><p><strong>Conclusion: </strong>There are particular clinical and imaging manifestations of TNBC, showing that radiological lesions that presented characteristics in ultrasound as nodular type lesions larger than 36 mm and in mammography moderate grade density, were associated with this subtype of breast tumours in a Peruvian population.</p>","PeriodicalId":11460,"journal":{"name":"ecancermedicalscience","volume":"18 ","pages":"1720"},"PeriodicalIF":1.2,"publicationDate":"2024-06-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11254400/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141632972","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
ecancermedicalsciencePub Date : 2024-06-27eCollection Date: 2024-01-01DOI: 10.3332/ecancer.2024.ed134
Mona Ali Hassan, Akash Maniam
{"title":"Refugees have cancer too.","authors":"Mona Ali Hassan, Akash Maniam","doi":"10.3332/ecancer.2024.ed134","DOIUrl":"10.3332/ecancer.2024.ed134","url":null,"abstract":"<p><p>Managing cancer under ideal conditions is a daunting prospect, to say the least. Treating cancer in conflict areas, war zones or being a refugee with cancer, facing complex political, economic and health-related threats presents a colossal global challenge. Managing such patients requires close coordination with international bodies, nongovernmental organisations and national governments, mitigating the burden of cancer care provision to patients and host countries alike.</p>","PeriodicalId":11460,"journal":{"name":"ecancermedicalscience","volume":"18 ","pages":"ed134"},"PeriodicalIF":1.2,"publicationDate":"2024-06-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11254391/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141633013","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Men's perceptions and perceived acceptability of their female partner's use of self-administered intravaginal therapies for treatment of cervical precancer in Kenya.","authors":"Chemtai Mungo, Konyin Adewumi, Grace Ellis, Mercy Rop, Everlyn Adoyo, Yating Zou, Lisa Rahangdale","doi":"10.3332/ecancer.2024.1719","DOIUrl":"10.3332/ecancer.2024.1719","url":null,"abstract":"<p><strong>Background: </strong>Cervical cancer continues to be a major health issue in low- and middle-income countries (LMICs). Despite increasing access to screening, access to precancer treatment remains a significant challenge in LMICs, highlighting a need for innovative, accessible and resource-appropriate treatment approaches, including self-administered therapies.</p><p><strong>Methods: </strong>A cross-sectional mixed-methods study was conducted among men aged 25-65 with a current female partner in Kisumu County, Kenya. Participants were sequentially recruited and surveyed to evaluate their understanding of human papillomavirus and cervical cancer, their views on screening and treatment and their attitudes toward self-administered therapies. Focus group discussions (FGDs) with a subset of the survey participants further explored their treatment preferences and perceptions.</p><p><strong>Results: </strong>Two hundred fourteen men participated in the survey, and 39 men participated in FGDs. The median age was 39 years, and 51% had a primary school education or less. Most (96%) were in a committed relationship, and 74% earned $10 or less daily. There was strong support for self-administered topical therapies, with 98% willing to support their partners using such treatments if available. Additionally, most participants were open to supporting necessary abstinence or condom use, though 76% believed their partners might hesitate to request condom use. When given an option, most preferred their partner to self-administer such therapies at home compared to provider administration at a health facility, citing convenience, cost-effectiveness and privacy. Preferences varied between two potential therapies, 5-Fluorouracil and Artesunate, based on their administration frequency, duration and abstinence requirements. Qualitative findings largely supported the quantitative analysis.</p><p><strong>Conclusion: </strong>The study demonstrates strong support for self-administered topical therapies for cervical precancer among Kenyan men. Additional research on acceptability, feasibility and efficacy in different LMICs could pave the way for these therapies to help bridge current cervical precancer treatment gaps in these settings.</p>","PeriodicalId":11460,"journal":{"name":"ecancermedicalscience","volume":"18 ","pages":"1719"},"PeriodicalIF":1.2,"publicationDate":"2024-06-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11254395/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141633010","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
ecancermedicalsciencePub Date : 2024-06-21eCollection Date: 2024-01-01DOI: 10.3332/ecancer.2024.1718
Kashif Ali Sarwar, Sameed Hussain, Ahsan Mahmood, Zeeshan Ahmed Alvi, Ateeqa Saad
{"title":"Comparative efficacy of palliative radiotherapy dose schedules in advanced bladder cancer-associated gross hematuria.","authors":"Kashif Ali Sarwar, Sameed Hussain, Ahsan Mahmood, Zeeshan Ahmed Alvi, Ateeqa Saad","doi":"10.3332/ecancer.2024.1718","DOIUrl":"10.3332/ecancer.2024.1718","url":null,"abstract":"<p><strong>Introduction: </strong>Gross hematuria (GH) in advanced/inoperable bladder cancer patients causes significant morbidity. Patients frequently need multiple transfusions. Hypofractionated radiotherapy (RT) has been shown to be effective in symptom palliation. In this study, we explore the efficacy of various fractionation regimens in these patients.</p><p><strong>Methods: </strong>This single institute retrospective analysis was conducted on 60 consecutive patients treated with palliative RT. Fractionation (single versus multiple) and biologically equivalent doses (BED; high ≥36 Gy versus low <36 Gy) were used to compare the efficacy of various fractionation regimens. The primary outcome was the difference in objective response rate (ORR) between various strata at 2, 4, 8 and 12 weeks. Major secondary outcomes were differences in ORR according to Eastern Cooperative Oncology Group (ECOG) performance status (PS) and tumour node metastases (TNM) stage, and the proportion of patients requiring re-transfusion(s) at 12 weeks. Data were analysed using SPSS 23.</p><p><strong>Results: </strong>Overall ORR at 2, 4, 8 and 12 weeks was 86%, 77%, 67% and 55%, respectively. There was no statistically significant difference in response rates between single or multi-fraction, or high versus low BED groups (All <i>p</i> = >0.05). Moreover, ECOG PS (<i>p</i> = 0.11) or TNM stage (<i>p</i> = 0.58) also had no impact on the response rate at 12 weeks. Nearly one-third (31%) of patients required further transfusions at 12 weeks.</p><p><strong>Conclusion: </strong>RT is an effective modality to control GH. No difference in ORR was found between single fractions versus multiple fractions, or high versus low BED regimens. Single fraction RT can be offered to these patients considering low cost, patient convenience and minimal side effects.</p>","PeriodicalId":11460,"journal":{"name":"ecancermedicalscience","volume":"18 ","pages":"1718"},"PeriodicalIF":1.2,"publicationDate":"2024-06-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11254410/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141633007","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Developing knowledge, attitude and practice questionnaire in desmoid tumours (KAPID study): applying e-Delphi to rare diseases.","authors":"Ghazal Tansir, Sameer Rastogi, Simran Kaur, Mrinal Gounder, Soumya Muta","doi":"10.3332/ecancer.2024.1715","DOIUrl":"10.3332/ecancer.2024.1715","url":null,"abstract":"<p><strong>Background: </strong>Rare diseases are associated with unique challenges encountered in diagnosis, treatment and conduct of clinical research. Desmoid tumour (DT) is one such ultra-rare malignancy about which awareness among medical professionals remains limited. We developed a questionnaire to assess knowledge, attitude and practice (KAP) among medical professionals on DT.</p><p><strong>Methods: </strong>E-Delphi method was used for the assessment of KAP for DT amongst clinical experts (experience of >/= 3 years in DT). 22 open-ended statements were developed by the core research group using current consensus guidelines. In round 1, experts provided subjective feedback which was incorporated into a 35-item questionnaire. Round 2 entailed experts giving feedback as a 5-point Likert scale classified into agreement (median score >/=4), neutral (median score 3) and disagreement (median score <3). Feedback from Round 2 was incorporated and questions with neutral consensus were modified. Questions in Round 3 achieved consensus if >/= 75% participants agreed.</p><p><strong>Results: </strong>11 (64.7%) of 17 contacted experts responded in Round 1 including 6 (54.4%) who gave additional inputs and 5 (45.6%) who agreed to all statements. In round 2, 8 out of 11 experts responded to the 35-item questionnaire on knowledge (<i>n</i> = 16), attitude (<i>n</i> = 8) and practice (<i>n</i> = 11). 32 questions obtained agreement and 3 (8.5%) had neutral consensus. These were modified for round 3, in which consensus on 2 (66.6%) was attained. The final questionnaire comprises 34 items with 15, 8 and 11 questions on in the sections of knowledge, attitude and practice (KAP), respectively.</p>","PeriodicalId":11460,"journal":{"name":"ecancermedicalscience","volume":"18 ","pages":"1715"},"PeriodicalIF":1.2,"publicationDate":"2024-06-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11254409/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141633008","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}