This study will ultimately aim at developing a GIMEMA platform for collecting HRQoL and symptom burden information on Italian patients with Philadelphia chromosome negative MPN. The main objective of the protocol is to improve our understanding of the impact of the disease and various treatments on patients-wellbeing, symptom burden and daily functioning.
Study Type
OBSERVATIONAL
Enrollment
572
Quality of life assessment
Compare HRQoL profiles of Philadelphia chromosome negative MPN patients with those of their peers in the general population
To detect a baseline difference of at least 4 points between MPN patients and their peers in the general population in any of the following primary scales of the EORTC QLQ-C30 questionnaire: fatigue, global QoL/health status, physical, emotional and role functioning (all ranging from 0 to 100 points).
Time frame: After 5 years from study entry
Compare HRQoL profiles of Philadelphia chromosome negative MPN patients with those of their peers in the general population
The same comparisons described for the primary endpoint will be performed on all other scales from EORTC QLQ-C30 questionnaire.
Time frame: After 5 years from study entry
Compare HRQoL profiles of Philadelphia chromosome negative MPN patients with those of their peers in the general population
The same comparisons described for the primary endpoint will be performed on all other scales from FACIT-Fatigue questionnaire.
Time frame: After 5 years from study entry
MPN patients' baseline profiles of self-reported HRQoL
To report MPN patients' baseline profiles of self-reported HRQoL and symptoms scores.
Time frame: After 5 years from study entry
Prognostic value of baseline patients' self-reported fatigue
To investigate the prognostic value of baseline patients' self-reported fatigue from EORTC QLQ-C30
Time frame: After 5 years from study entry
Prognostic value of baseline patients' self-reported HRQoL
To investigate the prognostic value of baseline patients' self-reported HRQoL
This platform is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare professional.
Aon Ss. Antonio E Biagio E C. Arrigo - Alessandria - Soc Ematologia
Alessandria, Italy
Asl Di Asti, Ospedali Riuniti - Presidio Ospedaliero Cardinal G. Massaia - Sc Oncologia
Asti, Italy
Aou Consorziale Policlinico - Bari - Uo Ematologia Con Trapianto
Bari, Italy
Irccs Oncologico Istituto Tumori Giovanni Paolo Ii - Bari - Uo Ematologia
Bari, Italy
Istituto di Ematologia "Lorenzo e A. Seragnoli"
Bologna, Italy
Ao Brotzu, Presidio Ospedaliero A. Businco - Cagliari - Sc Ematologia E Ctmo
Cagliari, Italy
Aou Careggi - Firenze - Sod Ematologia
Florence, Italy
Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico UOC Oncoematologia- Padiglione Marcora 2° piano
Milan, Italy
Aou Di Modena - Sc Ematologia
Modena, Italy
Azienda Ospedaliera "S.Gerardo"
Monza, Italy
...and 15 more locations
Time frame: After 5 years from study entry
Relationship between pruritus and HRQoL.
To investigate the relationship between Pruritus as assessed by MPN-SAF TSS questionnaire and HRQoL.
Time frame: After 5 years from study entry
Patterns over time of HRQoL
To estimate and compare patterns over time of HRQoL (outcome measures: EORTC QLQ-C30, FACIT-Fatigue, MPN-SAF TSS and FACIT-TS-G) of PT, EV and PMF patients.
Time frame: After 5 years from study entry
Prognostic patient-based index
To devise a prognostic patient-based index.
Time frame: After 5 years from study entry
Physicians' and patients' preferences for involvement in treatment decision-making
To assess physicians' and patients' preferences for involvement in treatment decision-making, as assessed by the CPS Questionnaire, across different risk groups and examine relationships between preferences for involvement and patient characteristics.
Time frame: After 5 years from study entry
Relationship between self-reported satisfaction with care with other HRQoL outcomes.
To investigate the relationship, in MPN patients, between self-reported satisfaction with care as assessed by the FACIT-TS-G questionnaire and its relationship with other HRQoL outcomes.
Time frame: After 5 years from study entry