Chronic Myeloid Leukemia, Neoplasms, Patient Portals, Telemedicine
Conditions
Brief summary
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.
Interventions
OTHERCMyLife
CMyLife is a digital patient platform for Patients With Chronic Myeloid Leukemia.
Sponsors
Radboud University Medical Center
Study design
Allocation
NON_RANDOMIZED
Intervention model
PARALLEL
Primary purpose
HEALTH_SERVICES_RESEARCH
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Newly diagnosed CML patients in chronic phase CML * Participants were treated with first or second line TKI's at the haematology department of the participating hospitals. Patients treated with second line TKI's were only allowed to participate if they switched TKI's as a result of side effects and not if they did not respond to the first line TKI
Exclusion criteria
* Participants in acceleration phase * Participants in blastcrise * Participants with planned pregnancy in the study period
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| the information received by CML patients | at baseline | To evaluate the information received by participants the EORTC QLQ-INFO25 was used |
| patient empowerment | at baseline | 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 |
| eHealth Literacy | at baseline | Participants' ability to find and evaluate online health information was measured using the eHealth Literacy Scale |
| medication compliance | at baseline | medication compliance of participants was measured using the Medication Adherence Rating Scale |
| guideline adherence | at baseline | guideline adherence was measured using the frequency of BCR-ABL1 value checks |
| Patients' experiences | at baseline | Participants' experiences with the care and information they receive in hospitals for their CML were measured using Patient Reported Experience Measures |
| Quality of life of CML patients: EORTC QLQ-C30 | at baseline | Quality of life of participants was measured using the EORTC QLQ-C30 |
| disease (CML) specific quality of life: EORTC QLQ-CML24 | at baseline | disease specific quality of life of participants was measured using the EORTC QLQ-CML24 |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Familiarity with CML related concept: Philadelphia chromosome | at baseline | % of participants who are not (at all) familiar with the concept Philadelphia chromosome |
| Familiarity with CML related concept: BCR-ABL | at baseline | % of participants who are not (at all) familiar with the concept BCR-ABL |
| Familiarity with CML related concept: tyrosine kinase inhibitor | at baseline | % of participants who are not (at all) familiar with the concept tyrosine kinase inhibitor |
| Familiarity with CML related concept: remission | at baseline | % of participants who are not (at all) familiar with the concept remission |
| Familiarity with CML related concept: log reduction | at baseline | % of participants who are not (at all) familiar with the concept log reduction |
| Familiarity with CML related concept: hematologic response/remission | at baseline | % of participants who are not (at all) familiar with the concept hematologic response/remission |
| Familiarity with CML related concept: cytogenetic response/remission | at baseline | % of participants who are not (at all) familiar with the concept cytogenetic response/remission |
| Familiarity with CML related concept: molecular response/remission | at baseline | % of participants who are not (at all) familiar with the concept molecular response/remission |
| Familiarity with CML related concept: major molecular remission | at baseline | % of participants who are not (at all) familiar with the concept major molecular remission |
| Familiarity with CML related concept: complete cytogenetic remission | at baseline | % of participants who are not (at all) familiar with the concept complete cytogenetic remission |
| Familiarity with CML related concept: treatment free remission | at baseline | % of participants who are not (at all) familiar with the concept treatment free remission |
| Familiarity with CML related concept: Hematon | at baseline | % of participants who are not (at all) familiar with the concept hematon |
Countries
Netherlands
Outcome results
None listed