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6. Patient and clinician-reported experiences of using electronic patient reported outcome measures (ePROMs) as part of routine cancer care

Author

Payne, Amelia, Horne, Ashley, Bayman, Neil, Blackhall, Fiona, Bostock, Layla, Chan, Clara, Coote, Joanna, Eaton, Marie, Fenemore, Jacqueline, Gomes, Fabio, Halkyard, Emma, Harris, Margaret, Lindsay, Colin, McEntee, Delyth, Neal, Hilary, Pemberton, Laura, Sheikh, Hamid, Woolf, David, Price, James, Yorke, Janelle, and Faivre-Finn, Corinne

Published
2023
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7. Psychometric testing of the Functional Assessment of Cancer Therapy/Gynecologic Oncology Group—Neurotoxicity (FACT/GOG-Ntx) subscale in a longitudinal study of cancer patients treated with chemotherapy

Author

Cheng, Hui Lin, Lopez, Violeta, Lam, Simon Ching, Leung, Anthony Kwun To, Li, Yu Chung, Wong, Kam Hung, Au, Joseph Siu Kie, Sundar, Raghav, Chan, Alexandre, De Ng, Terrence Rong, Suen, Lorna Kwai Ping, Chan, Choi Wan, Yorke, Janelle, and Molassiotis, Alex

Subjects
Health Services and Systems, Nursing, Health Sciences, Cancer, Adult, Aged, Antineoplastic Agents, Female, Humans, Longitudinal Studies, Male, Middle Aged, Neoplasms, Peripheral Nervous System Diseases, Psychometrics, Quality of Life, Reproducibility of Results, Surveys and Questionnaires, Chemotherapy, Peripheral neuropathy, FACT, GOG-Ntx, EORTC QLQ-CIPN20, Responsiveness, Confirmatory factor analysis, FACT/GOG-Ntx, Public Health and Health Services, Health Policy & Services, Health services and systems, Public health
Abstract

BackgroundThe aim of this study was to evaluate the psychometric properties of the Functional Assessment of Cancer Therapy/Gynecologic Oncology Group-Neurotoxicity (FACT/GOG-Ntx) subscale in a longitudinal study of cancer patients treated with chemotherapy.MethodsPatients were assessed with the FACT/GOG-Ntx subscale, European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Chemotherapy-Induced Peripheral Neuropathy Scale 20 (EORTC QLQ-CIPN20), National Cancer Institute -Common Terminology Criteria for Adverse Events (NCI-CTCAE), and light touch test using 10 g monofilament for up to ten assessment points from baseline (prior to initiation of first chemotherapy), after the end of each cycle (up to 6 cycles, 3 weeks per cycle), and at 6, 9, and 12 months after starting chemotherapy. Psychometric analyses included internal consistency reliability, convergent validity, factorial validity, sensitivity to change and responsiveness (minimal clinically important difference, MCID).ResultsCronbach's alpha coefficients of the FACT/GOG-Ntx subscale were 0.82-0.89 across assessment points. The subscale strongly correlated with the EORTC QLQ-CIPN20 (r = 0.79-0.93) but low-to-moderately correlated with the NCI-CTCAE sensory (rs = 0.23-0.45) and motor items (rs = 0.15-0.50) as well as the monofilament test (rs = 0.23-0.47). The hypothesized 4-factor structure of the FACT/GOG-Ntx subscale was not confirmed at assessment points (χ2/df = 2.26-8.50; all P

Published
2020

9. Minimal clinically important difference of the EORTC QLQ-CIPN20 for worsening peripheral neuropathy in patients receiving neurotoxic chemotherapy

Author

Yeo, Fiona, Ng, Chiu Chin, Loh, Kiley WJ, Molassiotis, Alex, Cheng, Hui Lin, Au, Joseph SK, Leung, Kwun To, Li, Yu Chung, Wong, Kam-Hung, Suen, Lorna, Chan, Choi Wan, Yorke, Janelle, Farrell, Carole, Bandla, Aishwarya, Ang, Emily, Lopez, Violeta, Sundar, Raghav, and Chan, Alexandre

Subjects
Biomedical and Clinical Sciences, Health Services and Systems, Nursing, Clinical Sciences, Health Sciences, Neurosciences, Neurodegenerative, Peripheral Neuropathy, Cancer, Antineoplastic Combined Chemotherapy Protocols, Female, Humans, Male, Middle Aged, Minimal Clinically Important Difference, Neoplasms, Neurotoxicity Syndromes, Organoplatinum Compounds, Peripheral Nervous System Diseases, Quality of Life, Surveys and Questionnaires, Taxoids, Peripheral neuropathy, Minimal clinically important difference, EORTC QLQ-CIPN20, FACT, GOG-NTX, FACT/GOG-NTX, Medical and Health Sciences, Psychology and Cognitive Sciences, Oncology & Carcinogenesis, Biomedical and clinical sciences, Health sciences, Psychology
Abstract

Context/objectivesThis is the first study to determine the minimal clinically important difference (MCID) of the European Organisation of Research and Treatment of Cancer Quality of Life Questionnaire-CIPN twenty-item scale (EORTC QLQ-CIPN20), a validated instrument designed to elicit cancer patients' experience of symptoms and functional limitations related to chemotherapy-induced peripheral neuropathy.MethodsCancer patients receiving neurotoxic chemotherapy completed EORTC QLQ-CIPN20 and the Functional Assessment of Cancer Therapy/Gynecologic Oncology Group-Neurotoxicity [FACT/GOG-NTX] at baseline, second cycle of chemotherapy (T2, n = 287), and 12 months after chemotherapy (T3, n = 191). Anchor-based approach used the validated FACT/GOG-NTX neurotoxicity (Ntx) subscale to identify optimal MCID cutoff for deterioration. Distribution-based approach used one-third standard deviation (SD), half SD, and one standard error of measurement of the total EORTC QLQ-CIPN20 score.ResultsThere was a moderate correlation between the change scores of the Ntx subscale and sensory and motor subscales of QLQ-CIPN20 (T2: r = - 0.722, p

Published
2019

10. Are we mis-estimating chemotherapy-induced peripheral neuropathy? Analysis of assessment methodologies from a prospective, multinational, longitudinal cohort study of patients receiving neurotoxic chemotherapy

Author

Molassiotis, Alex, Cheng, Hui Lin, Lopez, Violeta, Au, Joseph SK, Chan, Alexandre, Bandla, Aishwarya, Leung, KT, Li, YC, Wong, KH, Suen, Lorna KP, Chan, Choi Wan, Yorke, Janelle, Farrell, Carole, and Sundar, Raghav

Subjects
Neurodegenerative, Cancer, Peripheral Neuropathy, Neurosciences, Clinical Research, Adult, Aged, Aged, 80 and over, Antineoplastic Agents, Antineoplastic Combined Chemotherapy Protocols, Cohort Studies, Dose-Response Relationship, Drug, Female, Humans, Longitudinal Studies, Male, Middle Aged, Neoplasm Staging, Neoplasms, Patient Reported Outcome Measures, Peripheral Nervous System Diseases, Prevalence, Prospective Studies, Quality of Life, Severity of Illness Index, Peripheral neuropathy, Neurotoxicity, Chemotherapy, Assessment, Taxanes, Platins, Oncology and Carcinogenesis, Public Health and Health Services, Oncology & Carcinogenesis
Abstract

BackgroundThere are inconsistencies in the literature regarding the prevalence and assessment of chemotherapy-induced peripheral neuropathy (CIPN). This study explored CIPN natural history and its characteristics in patients receiving taxane- and platinum-based chemotherapy.Patients and methodsMulti-country multisite prospective longitudinal observational study. Patients were assessed before commencing and three weekly during chemotherapy for up to six cycles, and at 6,9, and 12 months using clinician-based scales (NCI-CTCAE; WHO-CIPN criterion), objective assessments (cotton wool test;10 g monofilament); patient-reported outcome measures (FACT/GOG-Ntx; EORTC-CIPN20), and Nerve Conduction Studies.ResultsIn total, 343 patients were recruited in the cohort, providing 2399 observations. There was wide variation in CIPN prevalence rates using different assessments (14.2-53.4%). Prevalence of sensory neuropathy (and associated symptom profile) was also different in each type of chemotherapy, with paclitaxel (up to 63%) and oxaliplatin (up to 71.4%) showing the highest CIPN rates in most assessments and a more complex symptom profile. Peak prevalence was around the 6-month assessment (up to 71.4%). Motor neurotoxicity was common, particularly in the docetaxel subgroup (up to 22.1%; detected by NCI-CTCAE). There were relatively moderately-to-low correlations between scales (rs = 0.15,p

Published
2019

12. Risk factors for chemotherapy‐induced peripheral neuropathy in patients receiving taxane‐ and platinum‐based chemotherapy

Author

Molassiotis, Alex, Cheng, Hui Lin, Leung, Kwun To, Li, Yu Chung, Wong, Kam Hung, Au, Joseph Siu Kie, Sundar, Raghav, Chan, Alexandre, De Ng, Terrence Rong, Suen, Lorna KP, Chan, Choi Wan, Yorke, Janelle, and Lopez, Violeta

Subjects
Neurodegenerative, Neurosciences, Prevention, Peripheral Neuropathy, Clinical Research, Cancer, Good Health and Well Being, Antineoplastic Agents, Bridged-Ring Compounds, Cancer Care Facilities, Cisplatin, Docetaxel, Female, Hong Kong, Humans, Male, Middle Aged, Neurotoxicity Syndromes, Peripheral Nervous System Diseases, Platinum Compounds, Prevalence, Prospective Studies, Quality of Life, Risk Factors, Taxoids, cancer, chemotherapy-induced peripheral neuropathy, platinum chemotherapy, risk factors, taxanes, platinum chemotherapy, Psychology, Cognitive Sciences
Abstract

BackgroundChemotherapy-induced peripheral neuropathy (CIPN) is a significant and difficult to manage side effect of neurotoxic chemotherapies. Several risk factors for CIPN have been identified to date, but inconsistencies and methodological limitations exist in past research. Also, a limited number of potential risk factors has been investigated in the past.AimThe objective of this study was to assess the relative contribution of a wider range of risk factors in the development of CIPN.MethodsThis analysis used the 6-month data after starting chemotherapy from a larger prospective observational study on CIPN risk, prevalence, and quality of life. Patients were assessed at recruitment for possible CIPN risk factors, including prior history of neuropathies, current/past infectious diseases; neurotoxic medication history; personal and treatment characteristics; smoking history, alcohol use, and vegetable/fruit intake. Neuropathy was assessed at 6-months after starting chemotherapy with the neuropathy (motor/sensory) items of the NCI-CTCAE scale and the WHO criterion for neuropathy. Data on symptom burden were also collected.ResultsData were available from 255 patients from three cancer centers in Hong Kong, Singapore, and UK. The use of different scales did not always identify the same predictor variables. Key risk factors in multivariate regression models included older age (highest OR = 1.08, p

Published
2019

18. Quantification of breathlessness using descriptors in cardiopulmonary disease

Author

Yorke, Janelle

Subjects
616.2
Abstract

Rationale: Breathlessness is a multidimensional construct reflected in different verbal descriptors. It is a perceptual experience that is complex and highly subjective. In cardiopulmonary disease breathlessness can be extremely debilitating and distressing. It is usually measured using scales such as visual analogue and Borg scales; or indirectly through report of activity limitation or quality of life. This thesis presents the development and validation of an instrument that measures overall breathlessness magnitude using descriptors that reflect its different aspects. Methods: Eighty-one breathlessness descriptors were administered to 123 patients with chronic obstructive pulmonary disease (COPD), 129 with interstitial lung disease (ILD) and 106 with chronic heart failure. These were reduced to 34 items using hierarchical methods. Rasch analysis was then applied to inform decisions regarding further item removal and overall fit to the Rasch unidimensional model. Principal components analysis (PCA) tested whether items separated into discrete components. Validity and reliability of the new instrument was further assessed in a separate group of 53 patients with COPD, 46 with ILD and 65 with asthma. Results: After removal of items with hierarchical methods (n=47) and items that failed to fit the Rasch model (n=22), 12 items were retained. The 12-item set had good internal-reliability (Cronbach's alpha=0.9) and fit to the model (x2 p=0.08). PCA identified two sub-components: 'physical' (n=7) and 'affective' (n=5). 'Affective' items represented more severe breathlessness. In the separate validation study, Dyspnoea-12 correlated with six-minute walk distance, St George's Respiratory Questionnaire, MRC dyspnea grade, and had good stability over time (ICCC=0.9, p<0.001). Conclusion: Dyspnoea-12 fulfills modern psychometric requirements for measurement. It provides a global score of breathlessness that incorporates both 'physical' and 'affective' aspects. It addresses the need for a comprehensive breathlessness instrument and is based on the language used by patients. It can measure breathlessness across several disease groups.

Published
2009

29. RadBone: bone toxicity following pelvic radiotherapy – a prospective randomised controlled feasibility study evaluating a musculoskeletal health package in women with gynaecological cancers undergoing pelvic radiotherapy

Author

Chatzimavridou Grigoriadou, Victoria, primary, Barraclough, Lisa H, additional, Baricevic-Jones, Ivona, additional, Bristow, Robert G, additional, Eden, Martin, additional, Haslett, Kate, additional, Johnson, Karen, additional, Kochhar, Rohit, additional, Merchant, Zoe, additional, Moore, John, additional, O’Connell, Sarah, additional, Taylor, Sally, additional, Westwood, Thomas, additional, Whetton, Anthony David, additional, Yorke, Janelle, additional, and Higham, Claire E, additional

Published
2022
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31. Attitudes towards the integration of smoking cessation into lung cancer screening in the United Kingdom: A qualitative study of individuals eligible to attend

Author

Groves, Samantha, primary, McCutchan, Grace, additional, Quaife, Samantha L., additional, Murray, Rachael L., additional, Ostroff, Jamie S., additional, Brain, Kate, additional, Crosbie, Philip A. J., additional, Yorke, Janelle, additional, Baldwin, David, additional, Field, John K., additional, and McWilliams, Lorna, additional

Published
2022
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35. ERS statement: a core outcome set for clinical trials evaluating the management of COPD exacerbations

Author

Mathioudakis, Alexander G., primary, Abroug, Fekri, additional, Agusti, Alvar, additional, Ananth, Sachin, additional, Bakke, Per, additional, Bartziokas, Konstantinos, additional, Beghe, Bianca, additional, Bikov, Andras, additional, Bradbury, Thomas, additional, Brusselle, Guy, additional, Cadus, Cordula, additional, Coleman, Courtney, additional, Contoli, Marco, additional, Corlateanu, Alexandru, additional, Corlateanu, Olga, additional, Criner, Gerard J., additional, Csoma, Balazs, additional, Emelyanov, Alexander, additional, Faner, Rosa, additional, Fernandez Romero, Gustavo, additional, Hammouda, Zeineb, additional, Horváth, Peter, additional, Huerta Garcia, Arturo, additional, Jacobs, Michael, additional, Jenkins, Christine, additional, Joos, Guy, additional, Kharevich, Olga, additional, Kostikas, Konstantinos, additional, Lapteva, Elena, additional, Lazar, Zsofia, additional, Leuppi, Joerg D., additional, Liddle, Carol, additional, Linnell, John, additional, López-Giraldo, Alejandra, additional, McDonald, Vanessa M., additional, Nielsen, Rune, additional, Papi, Alberto, additional, Saraiva, Isabel, additional, Sergeeva, Galina, additional, Sioutkou, Agni, additional, Sivapalan, Pradeesh, additional, Stovold, Elizabeth, additional, Wang, Hao, additional, Wen, Fuqiang, additional, Yorke, Janelle, additional, Williamson, Paula R., additional, Vestbo, Jørgen, additional, and Jensen, Jens-Ulrik, additional

Published
2021
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38. Translation, cross-cultural adaptation, and measurement properties of the Brazilian-Portuguese version of the idiopathic pulmonary fibrosis-specific version of the Saint George's Respiratory Questionnaire (SGRQ-I) for patients with interstitial lung disease

Author

Aguiar, Wagner Florentin, primary, Mantoani, Leandro Cruz, additional, Silva, Humberto, additional, Zamboti, Camile Ludovico, additional, Garcia, Thatielle, additional, Cavalheri, Vinicius, additional, Ribeiro, Marcos, additional, Yorke, Janelle, additional, Pitta, Fabio, additional, and Camillo, Carlos Augusto, additional

Published
2021
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39. Impact on quality of life from multimodality treatment for lung cancer: a randomised controlled feasibility trial of surgery versus no surgery as part of multimodality treatment in potentially resectable stage III-N2 NSCLC (the PIONEER trial)

Author

Taylor, Sally, primary, Yorke, Janelle, additional, Tsim, Selina, additional, Navani, Neal, additional, Baldwin, David, additional, Woolhouse, Ian, additional, Edwards, John, additional, Grundy, Seamus, additional, Robson, Jonathan, additional, Rhodes, Sarah, additional, Gomes, Fabio, additional, Blackhall, Fiona, additional, Faivre-Finn, Corinne, additional, and Evison, Matthew, additional

Published
2021
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45. Outcome Measures Used in Studies of Rehabilitation in Pulmonary Hypertension: A Systematic Review

Author

Keen, Carol, Harrop, Deborah, Hashmi-Greenwood, Molly, Kiely, David G, Yorke, Janelle, and Sage, Karen

Abstract

Rationale: The evidence base for rehabilitation in pulmonary hypertension is expanding, but adoption in clinical practice is limited. Objectives: The World Health Organization International Classification for Functioning, Disability and Health identifies three health domains: Body Functions/Structures, Activity and Participation in society. To ensure that the wider impact of rehabilitation in pulmonary hypertension is accurately assessed, it is important that study endpoints reflect all three domains. Methods: A systematic review of the literature was conducted to identify studies of rehabilitation in patients with pulmonary hypertension from 2006 to 2019. Results: Searches across five databases yielded 2,564 articles, of which 34 met eligibility criteria; 50 different outcome measures (mean = 5, minimum = 1, maximum = 9) were identified. When mapped onto the World Health Organization International Classification for Functioning, Disability and Health, 48% of instances of outcome usage were measures of Body Functions/Structure, 33% were measures of Activity, and 18% were measures of Participation. Measures of Participation were not included in seven studies (21%). Conclusions: Studies of rehabilitation in pulmonary hypertension have focused primarily on measures of Body Functions/Structure; the impact in other health domains is not well characterized. Greater inclusion of outcome measures reflecting Activity and Participation in society is needed to allow assessment of the wider impact of rehabilitation in patients with pulmonary hypertension.

Published
2020

48. EmPHasis-10 health-related quality of life score predicts outcomes in patients with idiopathic and connective tissue disease-associated pulmonary arterial hypertension: results from a UK multicentre study

Author

Lewis, Robert A., primary, Armstrong, Iain, additional, Bergbaum, Carmel, additional, Brewis, Melanie J., additional, Cannon, John, additional, Charalampopoulos, Athanasios, additional, Church, A. Colin, additional, Coghlan, J. Gerry, additional, Davies, Rachel J., additional, Dimopoulos, Konstantinos, additional, Elliot, Charlie, additional, Gibbs, J. Simon R., additional, Gin-Sing, Wendy, additional, Haji, Gulam, additional, Hameed, Abdul G., additional, Howard, Luke S., additional, Johnson, Martin K., additional, Kempny, Aleksander, additional, Kiely, David G., additional, Lo Giudice, Francesco, additional, McCabe, Colm, additional, Peacock, Andrew J., additional, Peleyeju, Oyinkansola, additional, Pepke-Zaba, Joanna, additional, Polwarth, Gary, additional, Price, Laura, additional, Sabroe, Ian, additional, Schreiber, Benjamin E., additional, Sheares, Karen, additional, Taboada, Dolores, additional, Thompson, A.A. Roger, additional, Toshner, Mark R., additional, Wanjiku, Ivy, additional, Wort, S. John, additional, Yorke, Janelle, additional, and Condliffe, Robin, additional

Published
2020
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49. Core outcome set for the management of acute exacerbations of chronic obstructive pulmonary disease: the COS-AECOPD ERS Task Force study protocol

Author

Mathioudakis, Alexander G., primary, Abroug, Fekri, additional, Agusti, Alvar, additional, Bakke, Per, additional, Bartziokas, Konstantinos, additional, Beghe, Bianca, additional, Bikov, Andras, additional, Bradbury, Thomas, additional, Brusselle, Guy, additional, Cadus, Cordula, additional, Coleman, Courtney, additional, Contoli, Marco, additional, Corlateanu, Alexandru, additional, Corlateanu, Olga, additional, Criner, Gerard, additional, Csoma, Balazs, additional, Emelyanov, Alexander, additional, Faner, Rosa, additional, Romero, Gustavo Fernandez, additional, Hammouda, Zeineb, additional, Horváth, Peter, additional, Huerta, Arturo Garcia, additional, Jacobs, Michael, additional, Jenkins, Christine, additional, Joos, Guy, additional, Kharevich, Olga, additional, Kostikas, Konstantinos, additional, Lapteva, Elena, additional, Lazar, Zsofia, additional, Leuppi, Joerg D., additional, Liddle, Carol, additional, López-Giraldo, Alejandra, additional, McDonald, Vanessa M., additional, Nielsen, Rune, additional, Papi, Alberto, additional, Saraiva, Isabel, additional, Sergeeva, Galina, additional, Sioutkou, Agni, additional, Sivapalan, Pradeesh, additional, Stovold, Elizabeth, additional, Wang, Hao, additional, Wen, Fuqiang, additional, Yorke, Janelle, additional, Williamson, Paula R., additional, Vestbo, Jørgen, additional, and Jensen, Jens-Ulrik, additional

Published
2020
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50. MOESM2 of Redefining chemotherapy-induced peripheral neuropathy through symptom cluster analysis and patient-reported outcome data over time

Author

Wang, Mian, Cheng, Hui, Lopez, Violeta, Raghav Sundar, Yorke, Janelle, and Molassiotis, Alex

Subjects
endocrine system diseases, neoplasms, female genital diseases and pregnancy complications
Abstract

Additional file 2: Table S2. Symptom clusters of the paclitaxel and carboplatin-paclitaxel subgroups over time.

Published
2019
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