A controlled before-after study is performed in order to gain insights into the effectiveness of the CMyLife platform in terms of medication compliance, guideline adherence, quality of life, information provision and patient empowerment. Participants who agreed to use the CMyLife platform for at least 6 months, were enrolled in the treatment group and participants who did not agree to use the platform were enrolled in the control group. After signing informed consent, participants received a baseline questionnaire by mail. Upon completion of the baseline questionnaire, participants used (intervention group) or did not use (control group) the CMyLife platform for at least 6 months, after which they were asked to complete the post-intervention questionnaire.
Study Type
INTERVENTIONAL
Allocation
NON_RANDOMIZED
Purpose
HEALTH_SERVICES_RESEARCH
Masking
NONE
Enrollment
99
CMyLife is a digital patient platform for Patients With Chronic Myeloid Leukemia.
Radboudumc
Nijmegen, Gelderland, Netherlands
the information received by CML patients
To evaluate the information received by participants the EORTC QLQ-INFO25 was used
Time frame: at baseline
the information received by CML patients
To evaluate the information received by participants the EORTC QLQ-INFO25 was used
Time frame: 6 months after baseline
patient empowerment
The Patient Activation Measure was used to gain more insight into how and to what extent the participant believed that he/she is able to improve his/her own health
Time frame: at baseline
patient empowerment
The Patient Activation Measure was used to gain more insight into how and to what extent the participant believed that he/she is able to improve his/her own health
Time frame: 6 months after baseline
eHealth Literacy
Participants' ability to find and evaluate online health information was measured using the eHealth Literacy Scale
Time frame: at baseline
eHealth Literacy
Participants' ability to find and evaluate online health information was measured using the eHealth Literacy Scale
Time frame: 6 months after baseline
medication compliance
medication compliance of participants was measured using the Medication Adherence Rating Scale
Time frame: at baseline
medication compliance
medication compliance of participants was measured using the Medication Adherence Rating Scale
Time frame: 6 months after baseline
guideline adherence
guideline adherence was measured using the frequency of BCR-ABL1 value checks
Time frame: at baseline
guideline adherence
guideline adherence was measured using the frequency of BCR-ABL1 value checks
Time frame: 6 months after baseline
Patients' experiences
Participants' experiences with the care and information they receive in hospitals for their CML were measured using Patient Reported Experience Measures
Time frame: at baseline
Patients' experiences
Participants' experiences with the care and information they receive in hospitals for their CML were measured using Patient Reported Experience Measures
Time frame: 6 months after baseline
Quality of life of CML patients: EORTC QLQ-C30
Quality of life of participants was measured using the EORTC QLQ-C30
Time frame: at baseline
Quality of life of CML patients: EORTC QLQ-C30
Quality of life of participants was measured using the EORTC QLQ-C30
Time frame: 6 months after baseline
disease (CML) specific quality of life: EORTC QLQ-CML24
disease specific quality of life of participants was measured using the EORTC QLQ-CML24
Time frame: at baseline
disease (CML) specific quality of life: EORTC QLQ-CML24
disease specific quality of life of participants was measured using the EORTC QLQ-CML24
Time frame: 6 months after baseline
Familiarity with CML related concept: Philadelphia chromosome
% of participants who are not (at all) familiar with the concept Philadelphia chromosome
Time frame: at baseline
Familiarity with CML related concept: Philadelphia chromosome
% of participants who are not (at all) familiar with the concept Philadelphia chromosome
Time frame: 6 months after baseline
Familiarity with CML related concept: BCR-ABL
% of participants who are not (at all) familiar with the concept BCR-ABL
Time frame: at baseline
Familiarity with CML related concept: BCR-ABL
% of participants who are not (at all) familiar with the concept BCR-ABL
Time frame: 6 months after baseline
Familiarity with CML related concept: tyrosine kinase inhibitor
% of participants who are not (at all) familiar with the concept tyrosine kinase inhibitor
Time frame: at baseline
Familiarity with CML related concept: tyrosine kinase inhibitor
% of participants who are not (at all) familiar with the concept tyrosine kinase inhibitor
Time frame: 6 months after baseline
Familiarity with CML related concept: remission
% of participants who are not (at all) familiar with the concept remission
Time frame: at baseline
Familiarity with CML related concept: remission
% of participants who are not (at all) familiar with the concept remission
Time frame: 6 months after baseline
This platform is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare professional.
Familiarity with CML related concept: log reduction
% of participants who are not (at all) familiar with the concept log reduction
Time frame: at baseline
Familiarity with CML related concept: log reduction
% of participants who are not (at all) familiar with the concept log reduction
Time frame: 6 months after baseline
Familiarity with CML related concept: hematologic response/remission
% of participants who are not (at all) familiar with the concept hematologic response/remission
Time frame: at baseline
Familiarity with CML related concept: hematologic response/remission
% of participants who are not (at all) familiar with the concept hematologic response/remission
Time frame: 6 months after baseline
Familiarity with CML related concept: cytogenetic response/remission
% of participants who are not (at all) familiar with the concept cytogenetic response/remission
Time frame: at baseline
Familiarity with CML related concept: cytogenetic response/remission
% of participants who are not (at all) familiar with the concept cytogenetic response/remission
Time frame: 6 months after baseline
Familiarity with CML related concept: molecular response/remission
% of participants who are not (at all) familiar with the concept molecular response/remission
Time frame: at baseline
Familiarity with CML related concept: molecular response/remission
% of participants who are not (at all) familiar with the concept molecular response/remission
Time frame: 6 months after baseline
Familiarity with CML related concept: major molecular remission
% of participants who are not (at all) familiar with the concept major molecular remission
Time frame: at baseline
Familiarity with CML related concept: major molecular remission
% of participants who are not (at all) familiar with the concept major molecular remission
Time frame: 6 months after baseline
Familiarity with CML related concept: complete cytogenetic remission
% of participants who are not (at all) familiar with the concept complete cytogenetic remission
Time frame: at baseline
Familiarity with CML related concept: complete cytogenetic remission
% of participants who are not (at all) familiar with the concept complete cytogenetic remission
Time frame: 6 months after baseline
Familiarity with CML related concept: treatment free remission
% of participants who are not (at all) familiar with the concept treatment free remission
Time frame: at baseline
Familiarity with CML related concept: treatment free remission
% of participants who are not (at all) familiar with the concept treatment free remission
Time frame: 6 months after baseline
Familiarity with CML related concept: Hematon
% of participants who are not (at all) familiar with the concept hematon
Time frame: at baseline
Familiarity with CML related concept: Hematon
% of participants who are not (at all) familiar with the concept hematon
Time frame: 6 months after baseline