Chronic lymphocytic leukemia (CLL), haemochromatosis, iron-deficient anaemia, myelodysplastic syndromes (MDS), monoclonal gammopathy of uncertain significance (MGUS), smouldering/asymptomatic myeloma, sickle cell disease (SCD), Waldenstrom’s macroglobulinemia Not Applicable
Conditions
Interventions
Sponsors
Eligibility
Inclusion criteria
Inclusion criteria: Inclusion for Arm 1: Patient/carer with a relevant condition at a participating Trust Inclusion for Arm 2: Healthcare professionals or other healthcare professional in relevant discipline Inclusion for Arm 3: Healthcare professional in a relevant discipline or with a relevant special interest Inclusion for Arm 4: 1. Diagnosis with a relevant stable condition 2. 16 years of age or older at the start date for data collection 3. Under the care of a participating Trust Inclusion criteria for Arm 5: 1. Diagnosis with a relevant stable condition 2. 16 years of age or older at the study start 3. Under the care of a participating Trust 4. Able to access and use the Ascelus platform
Exclusion criteria
Exclusion criteria: Exclusion for Arms 1 - 4: None Exclusion for Arm 5: Presence of co-morbidities that would require regular review in the clinic
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Patient satisfaction, empowerment, and quality of life on a new digital follow-up pathway, using EQ5D and PAM-13 questionnaires at baseline, 6, and 12 months following enrolment, alongside focus groups and interviews at 6 months following enrolment | — |
Secondary
| Measure | Time frame |
|---|---|
| 1. Safety of the digital follow-up pathway, using progression and adverse incident data taken from clinical records. This will be measured retrospectively for the cohort in the 6 months prior to enrolment, and at 6 and 12 months following enrolment 2. Cost-effectiveness of the digital follow-up pathway when compared to face-to-face and telephone appointments, using a detailed Healthcare Resource Utilisation survey taken at baseline, 6, and 12 months following enrolment 3. Healthcare professionals' satisfaction with the digital follow-up pathway, using clinician focus groups prior to app implementation and at 6 months following patient enrolment | — |
Countries
England, United Kingdom