Patient Experiences with the Impacts of Multiple Sclerosis & Disease-Modifying Therapies

Authors: Talente, Finseth LT, Blake N, Costello K, Schmidt H, Vandigo J, Oehrlein EM

Source: ClinicoEconomics and Outcomes Research, Vol Volume 17, Pp 199-215 (2025)

Subject Terms: multiple sclerosis disease-modifying therapy patient experience data survey treatment initiation adherence, Medicine (General), R5-920, Therapeutics. Pharmacology, RM1-950

File Description: electronic resource

Relation: https://www.dovepress.com/patient-experiences-with-the-impacts-of-multiple-sclerosis--disease-mo-peer-reviewed-fulltext-article-CEOR; https://doaj.org/toc/1178-6981

Access URL: https://doaj.org/article/dcd6e4c8c7784e78b7e79d308dc6b44b

A conceptual model for advanced/metastatic gastric or gastroesophageal junction cancer: a review of qualitative studies and results from patient interviews

Authors: France Ginchereau Sowell, Thom de Milliano, Keri J. S. Brady, Ginamarie Foglia, Medha Sasane, Samira Bensfia, Matthew Reaney

Source: BMC Cancer, Vol 25, Iss 1, Pp 1-17 (2025)

Subject Terms: Advanced/metastatic gastric cancer/Gastroesophageal junction cancer, Conceptual model, Gastric cancer, Gastroesophageal junction cancer, Health-related quality of life, Patient experience data, Neoplasms. Tumors. Oncology. Including cancer and carcinogens, RC254-282

File Description: electronic resource

Relation: https://doaj.org/toc/1471-2407

Access URL: https://doaj.org/article/40ee6db6b5cf4bd08f728116d3eafe10

Building on the successes of patient-focused drug development: a call for new policies to maintain momentum

Authors: Allison Martin, Victoria DiBiaso, Mladen Bozic, Alexander T. May

Source: Frontiers in Medicine, Vol 11 (2024)

Subject Terms: patient-focused drug development, patient experience data, Food and Drug Administration, PDUFA, regulatory decision making, benefit–risk, Medicine (General), R5-920

File Description: electronic resource

Relation: https://www.frontiersin.org/articles/10.3389/fmed.2024.1416123/full; https://doaj.org/toc/2296-858X

Access URL: https://doaj.org/article/6b0d2edc02bd4ec89e8bc667e5fcc799

Co-creation of the Global Patient Experience Data Navigator: a multi-stakeholder initiative to ensure the patient voice is represented in health decision-making

Authors: Tom Willgoss, Omar A. Escontrias, Carole Scrafton, Elisabeth Oehrlein, Victoria Livingstone, Fiona C. Chaplin, Maddalena Benivento, Hayley Chapman, Nicholas Brooke

Source: Research Involvement and Engagement, Vol 9, Iss 1, Pp 1-11 (2023)

Subject Terms: Patient engagement, Patient experience data, Public and patient involvement, Patient-generated data, Medical, pharmaceutical, and technology development, Healthcare, Medicine, Medicine (General), R5-920

File Description: electronic resource

Relation: https://doaj.org/toc/2056-7529

Access URL: https://doaj.org/article/d683ca17f1774908a0e39a7ddcce50b7

Leveraging patient experience data to guide medicines development, regulation, access decisions and clinical care in the EU

Authors: Diogo Almeida, Denise Umuhire, Rosa Gonzalez-Quevedo, Ana António, Juan Garcia Burgos, Patrice Verpillat, Nathalie Bere, Bruno Sepodes, Carla Torre

Source: Frontiers in Medicine, Vol 11 (2024)

Subject Terms: patient experience data, patient-reported outcomes, patient preferences, regulatory, decision-making, challenges, Medicine (General), R5-920

File Description: electronic resource

Relation: https://www.frontiersin.org/articles/10.3389/fmed.2024.1408636/full; https://doaj.org/toc/2296-858X

Access URL: https://doaj.org/article/79a1128a48854af0babdf4fed9fba608

The European Voice of the Patient living with pulmonary hypertension associated with interstitial lung disease: Diagnosis, symptoms, impacts, and treatments

Authors: Lucilla Piccari, Gabor Kovacs, Steve Jones, Hall Skaara, Claudia Roca Herms, Gabriela Silvina Bacchini Jeanneret, Melquiades Calzado Vinardell, Nuria Gonzalez‐Rojas Guix, Miriam Fernandez Delgado, Héctor Gálvez García, David Schwicker

Source: Pulmonary Circulation, Vol 14, Iss 2, Pp n/a-n/a (2024)

Subject Terms: health‐related quality of life, interstitial lung disease, patient experience data, patient‐involvement, pulmonary hypertension, Diseases of the circulatory (Cardiovascular) system, RC666-701, Diseases of the respiratory system, RC705-779

File Description: electronic resource

Relation: https://doaj.org/toc/2045-8940

Access URL: https://doaj.org/article/f0afdccc6efb47f1b9f7ca5dac0a0c41

Patient listening on social media for patient-focused drug development: a synthesis of considerations from patients, industry and regulators

Authors: Philipp Cimiano, Ben Collins, Maria Carmela De Vuono, Thierry Escudier, Jürgen Gottowik, Matthias Hartung, Mathias Leddin, Bikalpa Neupane, Raul Rodriguez-Esteban, Ana Lucia Schmidt, Cornelius Starke-Knäusel, Maarten Voorhaar, Krzysztof Wieckowski

Source: Frontiers in Medicine, Vol 11 (2024)

Subject Terms: patient-focused drug development, patient experience data, social media listening, real-world evidence, regulatory decision making, Medicine (General), R5-920

File Description: electronic resource

Relation: https://www.frontiersin.org/articles/10.3389/fmed.2024.1274688/full; https://doaj.org/toc/2296-858X

Access URL: https://doaj.org/article/e5abb5d01e8e4320baa1e8a71fd224e8

How can patient preferences be used and communicated in the regulatory evaluation of medicinal products? Findings and recommendations from IMI PREFER and call to action

Authors: Rosanne Janssens, Liese Barbier, Mireille Muller, Irina Cleemput, Isabelle Stoeckert, Chiara Whichello, Bennett Levitan, Tarek A. Hammad, Charis Girvalaki, Juan-Jose Ventura, Karin Schölin Bywall, Cathy Anne Pinto, Elise Schoefs, Eva G. Katz, Ulrik Kihlbom, Isabelle Huys

Source: Frontiers in Pharmacology, Vol 14 (2023)

Subject Terms: patient preferences, patient experience data, regulatory evaluation, scientific advice, benefit-risk assessment, clinical trial endpoint selection, Therapeutics. Pharmacology, RM1-950

File Description: electronic resource

Relation: https://www.frontiersin.org/articles/10.3389/fphar.2023.1192770/full; https://doaj.org/toc/1663-9812

Access URL: https://doaj.org/article/805a297780d245ba87369a0bda9aa40c

Patients’ Perception of the Impact of Innovation on Hemophilia Care Management Organization: A Qualitative Study Protocol (INNOVHEMO Study)

Authors: Beny K, du Sartz de Vigneulles B, Chamouard V, Guilloux R, Gay V, Negrier C, Dussart C

Source: Patient Preference and Adherence, Vol Volume 15, Pp 1807-1815 (2021)

Subject Terms: therapeutic innovation, hemophilia, care pathway, qualitative research, organizational aspect, patient experience data, Medicine (General), R5-920

File Description: electronic resource

Relation: https://www.dovepress.com/patients-perception-of-the-impact-of-innovation-on-hemophilia-care-man-peer-reviewed-fulltext-article-PPA; https://doaj.org/toc/1177-889X

Access URL: https://doaj.org/article/6c51f37618334b90a6bf38b472706c37

Digital methods to enhance the usefulness of patient experience data in services for long-term conditions: the DEPEND mixed-methods study

Authors: Caroline Sanders, Papreen Nahar, Nicola Small, Damian Hodgson, Bie Nio Ong, Azad Dehghan, Charlotte A Sharp, William G Dixon, Shôn Lewis, Evangelos Kontopantelis, Gavin Daker-White, Peter Bower, Linda Davies, Humayun Kayesh, Rebecca Spencer, Aneela McAvoy, Ruth Boaden, Karina Lovell, John Ainsworth, Magdalena Nowakowska, Andrew Shepherd, Patrick Cahoon, Richard Hopkins, Dawn Allen, Annmarie Lewis, Goran Nenadic

Source: Health Services and Delivery Research, Vol 8, Iss 28 (2020)

Subject Terms: patient experience, patient experience data, patient feedback, digital health, digital participation, text mining, co-design, quality improvement, mental health services, rheumatology, mixed methods, Public aspects of medicine, RA1-1270, Medicine (General), R5-920

File Description: electronic resource

Relation: https://doaj.org/toc/2050-4349; https://doaj.org/toc/2050-4357

Access URL: https://doaj.org/article/3f565277ec5d4211a656facb91f79c3a

Organisational strategies and practices to improve care using patient experience data in acute NHS hospital trusts: an ethnographic study

Authors: Sara Donetto, Amit Desai, Giulia Zoccatelli, Glenn Robert, Davina Allen, Sally Brearley, Anne Marie Rafferty

Source: Health Services and Delivery Research, Vol 7, Iss 34 (2019)

Subject Terms: PATIENT EXPERIENCE DATA, QUALITY IMPROVEMENT, ACTOR–NETWORK THEORY, NURSING WORK, ACUTE NHS HOSPITALS, CANCER CARE, DEMENTIA CARE, ETHNOGRAPHIC STUDY, Public aspects of medicine, RA1-1270, Medicine (General), R5-920

File Description: electronic resource

Relation: https://doaj.org/toc/2050-4349; https://doaj.org/toc/2050-4357

Access URL: https://doaj.org/article/8dbf3f03e4584831b72400d5ce2c292d

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