scholarly journals Investigating Respondents and Nonrespondents of a Postal Breast Cancer Questionnaire Survey Regarding Differences in Age, Medical Conditions, and Therapy

Breast Care ◽  
2016 ◽  
Vol 11 (2) ◽  
pp. 139-143 ◽  
Author(s):  
Anna L. Frobeen ◽  
Christoph Kowalski ◽  
Verena Weiß ◽  
Holger Pfaff
Keyword(s):  
Breast Cancer ◽  
Selection Bias ◽  
Questionnaire Survey ◽  
Cancer Control ◽  
Hospital Staff ◽  
Postal Questionnaire ◽  
Cross Sectional ◽  
Old Patients ◽  
Patient Reported ◽  
Reported Data

Background: Collecting patient-reported data via postal questionnaires is a common and frequently used technique. Selection bias may occur through lost data from nonrespondents. This study investigated differences in characteristics between respondents and nonrespondents of a postal breast cancer survey. Patients and Methods: The investigation was based on a cross-sectional postal questionnaire survey for the mandatory annual routine (re-)certification of accredited breast centers in North Rhine-Westphalia in 2010. Out of 4,444 patients meeting the inclusion criteria who gave their consent to participate, 3,856 respondents sent back a questionnaire and 588 nonrespondents did not. Using logistic regression, differences between respondents and nonrespondents regarding information gathered through hospital staff concerning age, affected breast, UICC (Union for International Cancer Control) staging and grading, ASA (American Society of Anesthesiologists) classification, neoadjuvant chemotherapy, and type of surgery were assessed. Results: Very young and very old patients sent back their questionnaire significantly less frequently, as did patients who showed a later cancer stage and poorer general health and those who underwent mastectomy. Conclusion: Differences exist between respondents and nonrespondents with regard to age, disease, and therapy characteristics that need to be considered for the interpretation and generalizability of survey results due to selection bias.

scholarly journals Patient-reported Outcomes of Patients With Breast Cancer During the COVID-19 Outbreak in the Epicenter of China: A Cross-sectional Survey Study

2020 ◽  
Vol 20 (5) ◽  
pp. e651-e662 ◽  
Author(s):  
Li Juanjuan ◽  
Cesar Augusto Santa-Maria ◽  
Feng Hongfang ◽  
Wang Lingcheng ◽  
Zhang Pengcheng ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Patient Reported Outcomes ◽  
Survey Study ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Patient Reported

Outcomes in breast cancer from the patient perspective: Development of an innovative, user-centered platform for collection and reporting of patient-reported data.

2021 ◽  
Vol 39 (28_suppl) ◽  
pp. 188-188
Author(s):  
Elena Tsangaris ◽  
Rakasa Pattanaik ◽  
Joanna O'Gorman ◽  
Jessica Means ◽  
Noah Sarucia ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Cancer Care ◽  
Web Application ◽  
Clinical Care ◽  
Quality Improvement Initiative ◽  
Breast Cancer Care ◽  
Clinical Implementation ◽  
Patient Reported ◽  
Reported Data ◽  
User Centered

188 Background: Transition towards a patient-centered healthcare model has been recognized as an important step towards improving the quality and coordination of breast cancer care. Although evidence suggests that patient self-reporting of quality of life improves clinical care, there are significant barriers to successful collection and use of patient-reported data (PRD) including a lack of a technology designed to fully engage patients and providers, limited electronic health record (EHR) integration, and suboptimal clinical implementation strategies. To address this, our team developed imPROVE, an innovative and customizable patient-reported data (PRD) collection platform consisting of a patient web-application and a clinician portal. Methods: This study was performed as a quality improvement initiative at Dana-Farber Cancer Institute (DFCI) and Brigham and Women’s Hospital (BWH). Multiple perspectives were sought from key stakeholders to ensure that the content and design of the platform target the needs of the end-users and garners the latest in technological advances. Development and testing were performed using best practices in user-centered design and agile development, and iterative programming sprints followed by stakeholder feedback and testing. Content was evaluated using probing questions about relevance, comprehensiveness, and clarity. Design was assessed through feedback about the look and feel of the platform and its usability. Results: A multidisciplinary team of 28 stakeholders in the field of breast cancer care, patient-reported outcomes research and value-based healthcare was assembled. Recurring group meetings (n = 8), individual patient interviews (n = 23), and two focus groups with the DF/HCC Breast Cancer Advocacy Group, were conducted. The resultant application is a hybrid mHealth application that is supported by iOS and Android and is comprised of five screens (myCare, myStory, myResources, myCommunity, myNotes). Patients are provided written and graphical displays of their PRD as well as tailored resources that are customized depending on their type and stage of treatment. The clinician portal is comprised of an overview table listing all patients enrolled for each individual clinician, as well as individual patient profiles demonstrating demographic, clinical, and outcomes data. Conclusions: imPROVE has the potential to create a paradigm shift in the delivery of care for breast cancer patients. Next steps will include implementation of imPROVE within the breast oncology and plastic surgery services at DFCI and BWH.

scholarly journals Neurofibromatosis Clinic: A Report on Patient Demographics and Evaluation of the Clinic

2016 ◽  
Vol 44 (5) ◽  
pp. 577-588
Author(s):  
Alireza Mansouri ◽  
Saber Ghadakzadeh ◽  
Talha Maqbool ◽  
Carolina Barnett ◽  
Karolyn Au ◽  
...  
Keyword(s):  
Immune System ◽  
Clinical Data ◽  
Single Gene ◽  
Clinical Manifestations ◽  
Neurofibromatosis Type ◽  
Cross Sectional ◽  
Canadian Population ◽  
Patient Reported ◽  
One Year ◽  
Reported Data

AbstractBackground: Neurofibromatosis type 1 (NF1) is a common single-gene disorder. A multidisciplinary approach to the management of NF1 patients is necessitated by the heterogeneity of clinical manifestations. Although multidisciplinary paediatric clinics have been well established, there is a dearth of such resources for adults with NF1. Herein we report our one-year institutional experience with a multidisciplinary adult NF1 clinic. Methods: A multidisciplinary team was assembled, and an NF Patient Registry Initiative questionnaire was adapted to collect patient-reported data during clinics. Multiple databases were searched to identify publications pertaining to the experience of other multidisciplinary NF1 clinics focusing on adult patients. Data on patient epidemiology and clinical staff were compared to our data. Results: A total of 77 patients were scheduled, and 68 attended the clinic, of whom 66 completed the intake questionnaire. The demographic and clinical data from this Canadian population are mostly consistent with previous reports, with some exceptions. Clinical data related to immune system involvement such as asthma, airway/breathing-related difficulties or allergies were striking in our NF1 population. Six relevant published reports of other NF1 clinics were identified. Reports from these studies pertained to periods ranging from 10 to 38 months, and the number of adults assessed ranged from 19 to 177 patients. Conclusions: The structure of our clinic and the patient volume are comparable to those of other established centres found in the literature. Our data offer valuable cross-sectional prevalence statistics in the Canadian population. The patient-reported data concerning involvement of the immune system contribute to an emerging recognized medical concern within the NF1 population and warrant further clinical and basic investigation.

scholarly journals Prevalence of Neuropathic Pain and Related Characteristics in Hidradenitis Suppurativa: A Cross-Sectional Study

2020 ◽  
Vol 9 (12) ◽  
pp. 4046
Author(s):  
Simone Garcovich ◽  
Simona Muratori ◽  
Chiara Moltrasio ◽  
Agata Alba Buscemi ◽  
Giulia Giovanardi ◽  
...  
Keyword(s):  
Neuropathic Pain ◽  
Pain Management ◽  
Hidradenitis Suppurativa ◽  
Specific Treatment ◽  
Cross Sectional Study ◽  
Pain Severity ◽  
Sectional Study ◽  
Cross Sectional ◽  
Patient Reported ◽  
Reported Data

Background: Pain is a core symptom of hidradenitis suppurativa (HS) and is of complex, multifactorial origin. HS patients frequently report typical neuropathic pain qualities, but its prevalence has been poorly described. Methods: In this cross-sectional study, we examine the prevalence of neuropathic pain (NP) component and related pain-characteristics of a hospital-based cohort of patients with symptomatic HS. We administered the pain-DETECT tool (PDQ), a validated screening tool for NP, collecting clinical and patient-reported data on pain, pruritus and pain-management. We obtained 110 complete datasets from symptomatic HS patients (49.1% females; Hurley I (27.3%])–II (45.5%)–III (27.3%)). According to the PDQ tool, 30% of patients were classified with a high probability (>90%) of neuropathic pain (LNP). LNP status was significantly associated with increased pain severity, disease activity, pruritus intensity and use of pain medication. Regression analysis showed a significant impact of the PDQ score on patient-reported outcomes, including pain severity and the dimensions of activity and affective pain interference. HS patients may present a mixed chronic pain phenotype with a neuropathic component, thus requiring additional pain-assessments. A multi-modal approach to pain management, in combination with disease-specific treatment, should be implemented in future interventional studies.

scholarly journals Long-term mesh complications and reoperation after laparoscopic mesh sacrohysteropexy: a cross-sectional study

2020 ◽  
Vol 31 (12) ◽  
pp. 2595-2602
Author(s):  
Matthew L. Izett-Kay ◽  
Dana Aldabeeb ◽  
Anthony S. Kupelian ◽  
Rufus Cartwright ◽  
Alfred S. Cutner ◽  
...  
Keyword(s):  
Service Use ◽  
Pelvic Organ ◽  
Postal Questionnaire ◽  
High Rate ◽  
Apical Prolapse ◽  
Mesh Complications ◽  
Cross Sectional ◽  
Patient Reported ◽  
Prolapse Symptoms

Abstract Introduction and hypothesis The paucity of long-term safety and efficacy data to support laparoscopic mesh sacrohysteropexy is noteworthy given concerns about the use of polypropylene mesh in pelvic floor surgery. This study is aimed at determining the incidence of mesh-associated complications and reoperation following this procedure. Methods This was a cross-sectional postal questionnaire study of women who underwent laparoscopic mesh sacrohysteropexy between 2010 and 2018. Potential participants were identified from surgical databases of five surgeons at two tertiary urogynaecology centres in the UK. The primary outcome was patient-reported mesh complication requiring removal of hysteropexy mesh. Secondary outcomes included other mesh-associated complications, reoperation rates and Patient Global Impression of Improvement (PGI-I) in prolapse symptoms. Descriptive statistics and Kaplan–Meier survival analyses were used. Results Of 1,766 eligible participants, 1,121 women responded (response proportion 63.5%), at a median follow-up of 46 months. The incidence of mesh complications requiring removal of hysteropexy mesh was 0.4% (4 out of 1,121). The rate of chronic pain service use was 1.8%, and newly diagnosed systemic autoimmune disorders was 5.8%. The rate of reoperation for apical prolapse was 3.7%, and for any form of pelvic organ prolapse it was 13.6%. For PGI-I, 81.4% of patients were “much better” or “very much better”. Conclusions Laparoscopic mesh sacrohysteropexy has a low incidence of reoperation for mesh complications and apical prolapse, and a high rate of patient-reported improvement in prolapse symptoms. With appropriate clinical governance measures, the procedure offers an alternative to vaginal hysterectomy with apical suspension. However, long-term comparative studies are still required.

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