scholarly journals Personal Accounts of Young-Onset Colorectal Cancer Organized as Patient-Reported Data: Protocol for a Mixed Methods Study

10.2196/25056 ◽  
2021 ◽  
Vol 10 (2) ◽  
pp. e25056
Author(s):  
Klay Lamprell ◽  
Diana Fajardo Pulido ◽  
Yvonne Tran ◽  
Bróna Nic Giolla Easpaig ◽  
Winston Liauw ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
Data Collection ◽  
Qualitative Study ◽  
Patient Reported Outcome ◽  
Mixed Methods Study ◽  
Young Onset ◽  
Patient Pathway ◽  
Patient Reported ◽  
Reported Data ◽  
Patient Stories

Background Young-onset colorectal cancer is a contemporary issue in need of substantial research input. The incidence of colorectal cancer in adults younger than 50 years is rising in contrast to the decreasing incidence of this cancer in older adults. People with young-onset colorectal cancer may be at that stage of life in which they are establishing their careers, building relationships with long-term partners, raising children, and assembling a financial base for the future. A qualitative study designed to facilitate triangulation with extant quantitative patient-reported data would contribute the first comprehensive resource for understanding how this distinct patient population experiences health services and the outcomes of care throughout the patient pathway. Objective The aim of this study was to undertake a mixed-methods study of qualitative patient-reported data on young-onset colorectal cancer experiences and outcomes. Methods This is a study of web-based unsolicited patient stories recounting experiences of health services and clinical outcomes related to young-onset colorectal cancer. Personal Recollections Organized as Data (PROD) is a novel methodology for understanding patients’ health experiences in order to improve care. PROD pivots qualitative data collection and analysis around the validated domains and dimensions measured in patient-reported outcome and patient-reported experience questionnaires. PROD involves 4 processes: (1) classifying attributes of the contributing patients, their disease states, their routes to diagnosis, and the clinical features of their treatment and posttreatment; (2) coding texts into the patient-reported experience and patient-reported outcome domains and dimensions, defined a priori, according to phases of the patient pathway; (3) thematic analysis of content within and across each domain; and (4) quantitative text analysis of the narrative content. Results Relevant patient stories have been identified, and permission has been obtained for use of the texts in primary research. The approval for this study was granted by the Macquarie University Human Research Ethics Committee in June 2020. The analytical framework was established in September 2020, and data collection commenced in October 2020. We will complete the analysis in March 2021 and we aim to publish the results in mid-2021. Conclusions The findings of this study will identify areas for improvement in the PROD methodology and inform the development of a large-scale study of young-onset colorectal cancer patient narratives. We believe that this will be the first qualitative study to identify and describe the patient pathway from symptom self-identification to help-seeking through to diagnosis, treatment, and to survivorship or palliation for people with young-onset colorectal cancer. International Registered Report Identifier (IRRID) DERR1-10.2196/25056

scholarly journals Personal Accounts of Young-Onset Colorectal Cancer Organized as Patient-Reported Data: Protocol for a Mixed Methods Study (Preprint)

2020 ◽  
Author(s):  
Klay Lamprell ◽  
Diana Fajardo Pulido ◽  
Yvonne Tran ◽  
Bróna Nic Giolla Easpaig ◽  
Winston Liauw ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
Data Collection ◽  
Qualitative Study ◽  
Patient Reported Outcome ◽  
Mixed Methods Study ◽  
Young Onset ◽  
Patient Pathway ◽  
Patient Reported ◽  
Reported Data ◽  
Patient Stories

BACKGROUND Young-onset colorectal cancer is a contemporary issue in need of substantial research input. The incidence of colorectal cancer in adults younger than 50 years is rising in contrast to the decreasing incidence of this cancer in older adults. People with young-onset colorectal cancer may be at that stage of life in which they are establishing their careers, building relationships with long-term partners, raising children, and assembling a financial base for the future. A qualitative study designed to facilitate triangulation with extant quantitative patient-reported data would contribute the first comprehensive resource for understanding how this distinct patient population experiences health services and the outcomes of care throughout the patient pathway. OBJECTIVE The aim of this study was to undertake a mixed-methods study of qualitative patient-reported data on young-onset colorectal cancer experiences and outcomes. METHODS This is a study of web-based unsolicited patient stories recounting experiences of health services and clinical outcomes related to young-onset colorectal cancer. Personal Recollections Organized as Data (PROD) is a novel methodology for understanding patients’ health experiences in order to improve care. PROD pivots qualitative data collection and analysis around the validated domains and dimensions measured in patient-reported outcome and patient-reported experience questionnaires. PROD involves 4 processes: (1) classifying attributes of the contributing patients, their disease states, their routes to diagnosis, and the clinical features of their treatment and posttreatment; (2) coding texts into the patient-reported experience and patient-reported outcome domains and dimensions, defined a priori, according to phases of the patient pathway; (3) thematic analysis of content within and across each domain; and (4) quantitative text analysis of the narrative content. RESULTS Relevant patient stories have been identified, and permission has been obtained for use of the texts in primary research. The approval for this study was granted by the Macquarie University Human Research Ethics Committee in June 2020. The analytical framework was established in September 2020, and data collection commenced in October 2020. We will complete the analysis in March 2021 and we aim to publish the results in mid-2021. CONCLUSIONS The findings of this study will identify areas for improvement in the PROD methodology and inform the development of a large-scale study of young-onset colorectal cancer patient narratives. We believe that this will be the first qualitative study to identify and describe the patient pathway from symptom self-identification to help-seeking through to diagnosis, treatment, and to survivorship or palliation for people with young-onset colorectal cancer. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/25056

scholarly journals Mixed methods study to develop the content validity and the conceptual framework of the electronic patient-reported outcome measure for vascular conditions

BMJ Open ◽  
2020 ◽  
Vol 10 (8) ◽  
pp. e034154
Author(s):  
Ahmed Aber ◽  
Patrick Phillips ◽  
Elizabeth Lumley ◽  
Stephen Radley ◽  
Steven M Thomas ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Systematic Reviews ◽  
Patient Reported Outcome ◽  
Mixed Methods Study ◽  
Face Validity ◽  
New Instrument ◽  
Patient Reported ◽  
The Face ◽  
Personal Assessment ◽  
Assessment Questionnaire

ObjectiveThe aim of this paper is to describe the stages undertaken to generate the items and conceptual framework of a new electronic personal assessment questionnaire for vascular conditions.DesignA mixed methods study: First a survey of vascular clinicians was completed to identify the most common conditions treated in vascular clinics and wards. Quantitative systematic reviews were done to identify validated patient-reported outcome measures (PROMs) for direct inclsuion in the new instrument. However, due to scarcity of validated PROMs, the items of the new instrument were mainly based on a large qualitative study of patients and systematic reviews of the qualitative evidence . This was followed by a quantitative clinicians’ consensus study and, finally, a qualitative face validity study with patients.ParticipantsVascular patients participated in the primary qualitative study and the face validity study. In the qualitative study, 55 patients were interviewed, and for the face validity, 19 patients gave feedback. Twelve clinicians completed the survey and 13 completed two cycles of the clinicians’ consensus study.ResultsThe items and scales in the electronic personal assessment questionnaire for vascular conditions (ePAQ-VAS) were generated based on the results of five systematic reviews evaluating existing PROMs for possible inclusion in ePAQ-VAS, five systematic reviews of qualitative evidence, a primary qualitative study involving 55 patients and clinicians’ input. One hundred and sixty-eight items were initially generated, of which 59 were eliminated by the expert panel due to repetition. The instrument was divided into one generic and three disease-specific sections (abdominal aortic aneurysm, carotid artery disease and lower limb vascular conditions). In each section, items were grouped together into putative scales. Fifty-five items were grouped across eight scales; the remaining items were kept as individual items, because of relevance to service users.ConclusionsThis multidimensional electronic questionnaire covers the most common vascular conditions. This is particularly important for patients presenting with mixed symptoms or multiple conditions. This tool captures symptomatology, health related quality of life (HRQoL) and other clinically relevant data, such as experience with services and comorbidities.

scholarly journals What is the optimal outcome after endoscopic sinus surgery in the treatment of chronic rhinosinusitis? A consultation of Canadian experts

2021 ◽  
Vol 50 (1) ◽  
Author(s):  
Nadim Saydy ◽  
Sami P. Moubayed ◽  
Marie Bussières ◽  
Arif Janjua ◽  
Shaun Kilty ◽  
...  
Keyword(s):  
Chronic Rhinosinusitis ◽  
Endoscopic Sinus Surgery ◽  
Patient Reported Outcome ◽  
Sinus Surgery ◽  
Structured Interviews ◽  
Subjective Data ◽  
Operative Outcomes ◽  
Patient Reported ◽  
Definition Of Success ◽  
Reported Data

Abstract Objectives Many experts feel that in the absence of well-defined goals for success, they have an easier time identifying failure. As success ought to not be defined only by absence of failure, we aimed to define optimal outcomes for endoscopic sinus surgery (ESS) in chronic rhinosinusitis (CRS) by obtaining expert surgeon perspectives. Methods A total of 12 surgeons participated in this targeted consultation. Face to face semi-structured interviews were performed with expert surgeons in the field of CRS and ESS. General impressions and personal definitions of acceptable operative success and optimal operative outcomes were compiled and summarized. Results According to an expert survey, patients’ main objectives are an improvement in their chief complain, a general improvement in quality of life (QoL), and a better overall symptomatic control. The most important aspects of endoscopy for defining a successful intervention were an adequate mucus circulation, a healthy mucosa, minimal edema, and patency of all explored cavities or ostia. In the assessment of surgical outcomes, it was determined that both objective and patient reported data must be carefully examined, with more attention given to subjective outcomes. Conclusions According to data gathered from a Canadian expert consultation, a definition of success must be based on both subjective data and nasal endoscopy. We propose to define an acceptable outcome as either a subjective improvement of at least the minimal clinically improvement difference of a validated patient reported outcome questionnaire, along with a satisfactory endoscopic result (1) or a complete subjective resolution with a sub-optimal endoscopy (2). Graphical abstract

FRI0562 THE PERSPECTIVE OF YOUNG PEOPLE WITH INFLAMMATORY ARTHRITIS ON PATIENT REPORTED OUTCOME MEASURES: RESULTS OF A EUROPE-WIDE SURVEY

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 883-883
Author(s):  
A. Alunno ◽  
E. Mosor ◽  
T. Stamm ◽  
P. Studenic
Keyword(s):  
Young People ◽  
Qualitative Study ◽  
Personal Experience ◽  
Large Scale ◽  
Young Patients ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Self Management ◽  
Research Support ◽  
Patient Reported

Background:Although patient-reported outcome measures (PROMs) are widely used in clinical practice and research, it is unclear if these instruments adequately cover the perspective of young people (18-35 years) with inflammatory arthritis (IA). We recently performed focus groups on PROMs with 53 young IA patients from 4 European countries, but the perspective of these patients has never been explored on a large scale.Objectives:To explore personal experience, opinions and beliefs of young people with IA across Europe concerning PROMs content, characteristics and ways of administration in order to inform EULAR points to consider (PtC) for including the perspective of young patients with IA into PROMs.Methods:Based on the results of our previous qualitative study, a task force including patients, rheumatologists and health professionals developed an online survey. The survey covered personal experience, preferences and opinions concerning PROMs. After being pilot tested and revised accordingly, the survey was distributed through the EULAR people with arthritis and rheumatism in Europe (PARE), Young PARE networks and the Emerging EULAR Network (EMEUNET).Results:547 people (88% females) from 29 countries aged 18-35 years with a diagnosis of juvenile idiopathic arthritis, rheumatoid arthritis, Still’s disease, psoriatic arthritis or spondyloarthritis completed the survey (Figure 1). Thirty-seven percent of respondents reported they never filled a PROM. A North-South and West-East Europe gradient was observed (30.4% vs 56.3% and 25.5% vs 58.8% respectively). Figure 2 outlines key findings of our survey. Among respondents having filled PROMs (n=313), two thirds perceived their access to PROM results useful for self-management of their health. Discomfort while filling PROMs was an issue for nearly half of the respondents, as questions were perceived as scaring or not relevant. This discomfort, the fear of judgement, or inadequate assessed time frames were major reasons for difficulties in translating the health experience into a rating scale. Still 75% use their own experience in the past as reference. Among several reasons, people scored differently from what they felt to emphasize how much better or worse they felt from previous assessment. Concerning preferences of numerical rating scales (NRS) or visual analogue scales (VAS) explored in all respondents regardless having ever filled in PROMs, those in favour of VAS mainly reasoned this by having more possibilities to select and those favouring NRS by better readability and interpretation. Maintaining a sitting position, preparing food, doing physical activity, intimacy and sleep problems were the items selected most frequently in the survey as in the qualitative study to be included in PROMs. The implementation of discussion on self-management, education/work and support possibilities at regular clinic visits was considered important by over 60% of responders. Overall, electronic capturing of PROMs was preferred over paper-based questionnaires (57% vs 13%).Conclusion:Our survey explored for the first time the personal experience and opinions of young people with IA concerning PROMs on a large scale and confirmed the results obtained in the qualitative study. This survey informed the EULAR PtC for including the perspective of young patients with IA into PROMs.References:[1] Mosor E et al. Arthritis Rheumatol. 2019; 71 (suppl 10)Disclosure of Interests:Alessia Alunno: None declared, Erika Mosor: None declared, Tanja Stamm Grant/research support from: AbbVie, Roche, Consultant of: AbbVie, Sanofi Genzyme, Speakers bureau: AbbVie, Roche, Sanofi, Paul Studenic Grant/research support from: Abbvie

The Prospective Dutch Colorectal Cancer (PLCRC) Cohort: Towards a unique patient-reported outcome enriched “real-world” data cohort.

2020 ◽  
Vol 38 (4_suppl) ◽  
pp. 52-52
Author(s):  
Jeroen W.G. Derksen ◽  
Marloes A.G. Elferink ◽  
Geraldine R. Vink ◽  
Jeanine M.L. Roodhart ◽  
Anne Maria May ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
The Netherlands ◽  
Cancer Registry ◽  
Real World ◽  
Patient Reported Outcome ◽  
Real World Data ◽  
Small Shift ◽  
Netherlands Cancer Registry ◽  
Patient Reported ◽  
Demographical Data

52 Background: The initiation of high-quality pan-population cohort studies is a major research priority for the improvement of colorectal cancer (CRC) outcomes as advocated by regulators and the research community. In 2013, the PLCRC cohort of the Dutch Colorectal Cancer Group was initiated in which longitudinal clinical data and patient-reported outcomes (PRO) are collected, along with pathology data and biospecimens, to serve as an infrastructure for a broad body of observational and (randomized) interventional research. Here we report on the cohort’s progress and investigate whether it develops in the direction of a nation-wide cohort of “real-world” nature. Methods: Clinical and demographical data of PLCRC participants, as prospectively collected in the Netherlands Cancer Registry by qualified data managers, were compared with the total Dutch CRC population with incidence between 2013-2017 (ref. population) which was also obtained from the Netherlands Cancer Registry. Variable distributions are compared using t-tests and χ2-tests, whereas cohort characteristics are descriptive. Results: In June 2019, 5,746 patients were enrolled in 52 / 75 Dutch hospitals, and 81% consented to receive repeated PROs. Compared to patients enrolled between 2013-16 (N = 1,093, 1-17 recruiting hospitals), we found a small shift towards the Dutch ref. population (N = 74,692) for patients enrolled between 2017-19 (N = 4,653, 17-52 hospitals) in terms of age at diagnosis (mean 64.6±10.2 years in 2013-16, 65.2±10.8 in 2017-19, and 69.5±10.9 in the ref. group), sex (65% males in 2013-16, 61% in 2017-19, and 56% in the ref. population), location of primary tumor (56% rectum in 2013-16, 40% in 2017-19, and 31% in the ref. population) and TNM stage (35% stage I-II in 2013-16, 41% in 2017-19, and 48% in the population). Conclusions: Over the past years, the number of PLCRC recruiting centers and participating patients, with high consent rates for PROs, steeply increased. Further improvements in recruitment methodologies and multidisciplinary enrolment of patients will continue to enhance PLCRC’s representation of the “real-world” and its ability to supplement trial-based evidence.

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