Shared decision making in patients with rare hematologic and oncologic diseases

Status

Recruiting

Phases

Unknown

Study type

Interventional

Source

DRKS

Registry ID

DRKS00033845

Enrollment

150

Registered

2025-02-17

Start date

2024-12-06

Completion date

Unknown

Last updated

2025-10-06

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Shared Decision Making, myelofibrosis, paroxysmal nocturnal hemoglobinuria, aplastic anemia C94.4 D59.5 D60-D64

Interventions

Group 1: Implementation of Shared Decision Making (SDM) on basis of the S2C program in rare hematologic and oncologic diseases The strengthening of shared decision making results by implementation of

Eligibility

Sex/Gender

All

Age

18 Years to No maximum

Inclusion criteria

Inclusion criteria: diagnosis of primary myelofibrosis/post-ET-myelofibrosis/post-PV-myelofibrosis diagnosis of paroxysmal nocturnal hemoglobinuria diagnosis of aplastic anemia

Exclusion criteria

Exclusion criteria: linguistic barrier

Design outcomes

Primary

Measure	Time frame
- acquisition of the perceived involvement of patients in medical decision-making situations - acquisition at timepoint t0 = before the implementation of the S2C program and at timepoint t1 = 6 month after successful and completed implementation of the S2C program - via questionnaire: Perceived Involvement in Care Scales (PICS)	—

Secondary

Measure	Time frame
Patients: - acquisition of health literacy - acquisition at timepoint t0 = before the implementation of the S2C program and at timepoint t1 = 6 month after successful and completed implementation of the S2C program - via questionnaire: Health Literacy Scale (HLS Q12) - acquisition of decision making processes - acquisition at timepoint t0 = before the implementation of the S2C program and at timepoint t1 = 6 month after successful and completed implementation of the S2C program - via questionnaire: Decision Conflict Scale (DCS) and CollaboRATE - acquisition of adherence regarding regular medication intake - acquisition at timepoint t0 = before the implementation of the S2C program and at timepoint t1 = 6 month after successful and completed implementation of the S2C program - via questionnaire: Morisky Green Levine Medication Adherence Scale (MGLS) - acquisition of anxiety and depressions - acquisition at timepoint t0 = before the implementation of the S2C program and at timepoint t1 = 6 month after successful and completed implementation of the S2C program - via questionnaire: Hospital Anxiety and Depression Scale (HADS) - acquisition of MPN-related symptoms - acquisition at timepoint t0 = before the implementation of the S2C program and at timepoint t1 = 6 month after successful and completed implementation of the S2C program - via questionnaire: Myeloproliferative neoplasm symptom assessment form total symptom score (MPN-SAF TSS) - acquisition of PNH or AA related symptoms - acquisition at timepoint t0 = before the implementation of the S2C program and at timepoint t1 = 6 month after successful and completed implementation of the S2C program - via questionnaire: FACIT Fatigue - acquisition of sociodemographic factors - acquisition at timepoint t0 = before the implementation of the S2C program and at timepoint t1 = 6 month after successful and completed implementation of the S2C program - via questionnaire - description of participatio	—

Measure

Time frame

Patients: - acquisition of health literacy - acquisition at timepoint t0 = before the implementation of the S2C program and at timepoint t1 = 6 month after successful and completed implementation of the S2C program - via questionnaire: Health Literacy Scale (HLS Q12) - acquisition of decision making processes - acquisition at timepoint t0 = before the implementation of the S2C program and at timepoint t1 = 6 month after successful and completed implementation of the S2C program - via questionnaire: Decision Conflict Scale (DCS) and CollaboRATE - acquisition of adherence regarding regular medication intake - acquisition at timepoint t0 = before the implementation of the S2C program and at timepoint t1 = 6 month after successful and completed implementation of the S2C program - via questionnaire: Morisky Green Levine Medication Adherence Scale (MGLS) - acquisition of anxiety and depressions - acquisition at timepoint t0 = before the implementation of the S2C program and at timepoint t1 = 6 month after successful and completed implementation of the S2C program - via questionnaire: Hospital Anxiety and Depression Scale (HADS) - acquisition of MPN-related symptoms - acquisition at timepoint t0 = before the implementation of the S2C program and at timepoint t1 = 6 month after successful and completed implementation of the S2C program - via questionnaire: Myeloproliferative neoplasm symptom assessment form total symptom score (MPN-SAF TSS) - acquisition of PNH or AA related symptoms - acquisition at timepoint t0 = before the implementation of the S2C program and at timepoint t1 = 6 month after successful and completed implementation of the S2C program - via questionnaire: FACIT Fatigue - acquisition of sociodemographic factors - acquisition at timepoint t0 = before the implementation of the S2C program and at timepoint t1 = 6 month after successful and completed implementation of the S2C program - via questionnaire - description of participatio

—

Countries

Germany

Contacts

Public ContactDeborah Christen

Uniklinik RWTH Aachen, Medizinische Klinik IV

dchristen@ukaachen.de+49 241 80 89806

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Feb 4, 2026