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BACKGROUND: This post-hoc retrospective study describes long-term patient-reported outcomes (PROs) for REarranged during Transfection (RET)-altered non-small-cell lung cancer (NSCLC), medullary thyroid cancer (MTC), non-MTC thyroid cancer (TC), and tumor agnostic (TA) patients (Data cut-off: January 2023) from the LIBRETTO-001 trial. PATIENTS AND METHODS: Patients completed the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire-Core 30 (QLQ-C30). Patients with MTC also completed a modified version of the Systemic Therapy-Induced Diarrhea Assessment Tool (mSTIDAT). The proportion of patients with improved, stable, or worsened status after baseline was reported. PROs were summarized at 3 years (cycle 37) post-baseline for the NSCLC and MTC cohorts, and at 2 years (cycle 25) post-baseline for the TC and TA cohorts. Time-to-event outcomes (time to first improvement or worsening and duration of improvement) were reported. RESULTS: The baseline assessment was completed by 200 (63.3%), 209 (70.8%), 50 (76.9%), and 38 (73.1%) patients in the NSCLC, MTC, TC, and TA cohorts, respectively. The total compliance rate was 80%, 82%, 70%, and 85%, respectively. Approximately 75% (NSCLC), 81% (MTC), 75% (TC), and 40% (TA) of patients across all cohorts reported improved or stable QLQ-C30 scores at year 3 (NSCLC and MTC) or year 2 (TC and TA) with continuous selpercatinib use. Across cohorts, the median time to first improvement ranged from 2.0 to 19.4 months, the median duration of improvement ranged from 1.9 to 28.2 months, and the median time to first worsening ranged from 5.6 to 44.2 months. The total compliance rate for the mSTIDAT was 83.7% and the proportion of patients with MTC who reported diarrhea on the mSTIDAT was reduced from 80.8% at baseline to 35.6% at year 3. CONCLUSIONS: A majority of patients with RET-driven cancers improved or remained stable on most QLQ-C30 domains, demonstrating favorable health-related quality

BACKGROUND: Many patient-reported outcomes (PROs) have been developed for inflammatory bowel disease (IBD) without recommendations for clinical use. PROs differ from physician-reported disease activity indices; they assess patients' perceptions of their symptoms, functional status, mental health, and quality of life, among other areas. We sought to investigate the current global use and barriers to using PROs in clinical practice for IBD. METHODS: A cross-sectional survey was performed. An electronic questionnaire was sent to an international group of providers who care for patients with IBD. RESULTS: There were 194 respondents, including adult/pediatric gastroenterologists, advanced practice providers, and colorectal surgeons from 5 continents. The majority (80%) use PROs in clinical practice, 65% frequently found value in routine use, and 50% frequently found PROs influenced management. Thirty-one different PROs for IBD were reportedly used. Barriers included not being familiar with PROs, not knowing how to incorporate PRO results into clinical practice, lack of electronic medical record integration, and time constraints. Most (91%) agreed it would be beneficial to have an accepted set of consistently used PROs. The majority (60%) thought that there should be some cultural differences in PROs used globally but that PROs for IBD should be consistent around the world. CONCLUSIONS: PROs are used frequently in clinical practice with wide variation in which are used and how they influence management. Education about PROs and how to use and interpret an accepted set of PROs would decrease barriers for use and allow for global harmonization.

Background Many patient-reported outcomes (PROs) have been developed for inflammatory bowel disease (IBD) without recommendations for clinical use. PROs differ from physician-reported disease activity indices; they assess patients' perceptions of their symptoms, functional status, mental health, and quality of life, among other areas. We sought to investigate the current global use and barriers to using PROs in clinical practice for IBD. Methods A cross-sectional survey was performed. An electronic questionnaire was sent to an international group of providers who care for patients with IBD. Results There were 194 respondents, including adult/pediatric gastroenterologists, advanced practice providers, and colorectal surgeons from 5 continents. The majority (80%) use PROs in clinical practice, 65% frequently found value in routine use, and 50% frequently found PROs influenced management. Thirty-one different PROs for IBD were reportedly used. Barriers included not being familiar with PROs, not knowing how to incorporate PRO results into clinical practice, lack of electronic medical record integration, and time constraints. Most (91%) agreed it would be beneficial to have an accepted set of consistently used PROs. The majority (60%) thought that there should be some cultural differences in PROs used globally but that PROs for IBD should be consistent around the world. Conclusions PROs are used frequently in clinical practice with wide variation in which are used and how they influence management. Education about PROs and how to use and interpret an accepted set of PROs would decrease barriers for use and allow for global harmonization.Lay Summary Patient-reported outcomes (PROs) are standardized tools that generate numeric values representing patient perceptions of symptoms, functional status, mental health, and quality of life. In inflammatory bowel disease, it is necessary to identify practical PROs that represent what is most important to patients.

Background Many patient-reported outcomes (PROs) have been developed for inflammatory bowel disease (IBD) without recommendations for clinical use. PROs differ from physician-reported disease activity indices; they assess patients' perceptions of their symptoms, functional status, mental health, and quality of life, among other areas. We sought to investigate the current global use and barriers to using PROs in clinical practice for IBD. Methods A cross-sectional survey was performed. An electronic questionnaire was sent to an international group of providers who care for patients with IBD. Results There were 194 respondents, including adult/pediatric gastroenterologists, advanced practice providers, and colorectal surgeons from 5 continents. The majority (80%) use PROs in clinical practice, 65% frequently found value in routine use, and 50% frequently found PROs influenced management. Thirty-one different PROs for IBD were reportedly used. Barriers included not being familiar with PROs, not knowing how to incorporate PRO results into clinical practice, lack of electronic medical record integration, and time constraints. Most (91%) agreed it would be beneficial to have an accepted set of consistently used PROs. The majority (60%) thought that there should be some cultural differences in PROs used globally but that PROs for IBD should be consistent around the world. Conclusions PROs are used frequently in clinical practice with wide variation in which are used and how they influence management. Education about PROs and how to use and interpret an accepted set of PROs would decrease barriers for use and allow for global harmonization.Lay Summary Patient-reported outcomes (PROs) are standardized tools that generate numeric values representing patient perceptions of symptoms, functional status, mental health, and quality of life. In inflammatory bowel disease, it is necessary to identify practical PROs that represent what is most important to patients.

Eine Krebserkrankung und deren Behandlung sind für PatientInnen auf unterschiedliche Art und Weise belastend. Je nach Krebsart, Stadium und Behandlung können (negative) Auswirkungen einen substantiellen Einfluss auf die physische und psychische Gesundheit sowie auf das Alltagsleben der PatientInnen haben. Die gesundheitsbezogene Lebensqualität (health-related quality of life, HRQoL) wird mehr und mehr als primäres oder sekundäres Maß in klinischen Studien verwendet um den Behandlungserfolg zu messen oder um Nebenwirkungen, inklusive psychosozialen und praktischen Problemen, zu begegnen. Mit patientenzentrierten Fragebögen (patient-reported outcome measures, PROMs) kann der subjektive Einfluss einer Krankheit oder deren Behandlung erfasst werden. Um eine erfolgreiche Implementierung der routinemäßigen Erhebung von patient-reported outcomes bei onkologischen PatientInnen zu fördern, wurde in dieser Dissertation insbesondere ein Fokus auf die Präsentation und den klinischen Nutzen von patient-reported outcomes im klinischen Alltag gelegt. Dafür wurde anhand von semi-strukturierten Interviews untersucht, inwiefern 40 HirntumorpatientInnen ihre eigenen, graphisch dargestellten PROM Ergebnisse verstehen. Zusätzlich wurde der klinische Nutzen von routinemäßigem patient-reported outcome monitoring an einer nuklearmedizinischen Station (N=487 PatientInnen mit Schilddrüsenkarzinom/neuroendokrinen Tumoren während der standardmäßigen Vermittlungsperiode und N=502 PatientInnen mit Schilddrüsenkarzinom/neuroendokrinen Tumoren während der Screeningunterstützten Vermittlungsperiode) sowie in einem Rehabilitationssetting (N=939 KrebspatientInnen) untersucht. Wir konnten zeigen, dass die PatientInnen in der Lage waren ihre PROM Ergebnisse zu verstehen und deren Verlauf zu interpretieren. Die dargestellten Ergebnisse deckten sich mit der persönlichen Wahrnehmung von physischer und emotionaler Funktionsfähigkeit, Schmerz und Erschöpfung. In der zweiten Studie konnten wir anhand einer r, Cancer and cancer treatment are burdensome for the patients in several ways. Depending on cancer type, stage and treatment, (negative) effects can have a substantial impact on the patients’ physical and mental well-being and consequently everyday living. Health-related quality of life (HRQoL) is increasingly used as primary or secondary outcome measure in clinical studies and trials to evaluate treatment response, or to manage side-effects, including psychosocial or practical problems. To capture the patients’ perspective, HRQoL can be assessed using patient-reported outcome measures (PROMs) which reflect the subjective impact of a disease or treatment. To foster a successful implementation of routine patient-reported outcome monitoring for oncological patients, this thesis mainly addresses the presentation and clinical use of PRO data in daily clinical practice. Hence, patients’ understanding of the graphical presentation of PROM results was investigated conducting semi-structured interviews with 40 brain tumour patients. Additionally, the clinical use of routine patient-reported outcome monitoring in daily clinical practice (N=487 thyroid carcinoma/neuroendocrine tumour patients during standard referral and N=502 thyroid carcinoma/neuroendocrine tumour patients during screening‐assisted referral) and in a rehabilitation setting (N=939 cancer patients) was evaluated. We found that patients are able to understand and interpret change over time of their graphically presented PROM results, which were consistent with their personal perception of physical and emotional functioning, pain and fatigue. In the second study, we provide evidence from a real‐life setting that screening for psychosocial distress can foster referrals to psycho-oncological treatment and help to meet psychosocial needs of this specific patient group. In the third study, we were able to identify clinically meaningful improvements of patients’ HRQoL during an oncological inpatient rehabilitation tre, vorgelegt von Fanny Lara Carla Loth, BSc MSc, Kumulative Dissertation aus drei Artikeln, Dissertation Universität Innsbruck 2018