Neoplasms

Blood and Lymph Conditions

All Conditions

Rare Diseases

Hematologic Neoplasms

Hematologic Diseases

Chronic Graft Versus Host Disease

Participants will receive disease specific questionnaires electronically, cGVHD-PRO (Lee Symtpom Scale), one week prior to their scheduled visit in the outpatient clinic. The participants will be asked to answer the questionnaire from home without any involvement from clinicians. Afterwards the PRO data will be used during the scheduled clinical consultations as an instrument to discover symptoms on chronic GVHD and systematically to monitoring symptoms developing over time.

Symptom identification and management with Lee Symptom Scale in follow up care

Lee Symptom Scala

Mary Jarden

A two sited feasibility study to test the feasibility of systematic symptom identification with disease specific and clinically developed PROM (Lee Symptom Scale) longitudinally with a 12 month follow up in outpatient care in patients post HSCT to assess symptoms of chronic GVHD (n= 30).

A prospective, non-randomized, feasibility study examining a systematic approach to symptom management using PROMs with 12 months of follow up in hematological outpatient clinic

Systematic Symptom Identification With Disease Specific PROM to Assess Symptoms of Chronic GVHD in Outpatient Care in Patients Post HSCT

Systematic Symptom Identification With Disease Specific PROM to Assess Symptoms of Chronic GVHD in Outpatient Care in Patients Post HSCT - a Two Site Feasibility Study

Immunosuppresive drugs the participants receive after transplantation (within the study period)

Periods with hospitalizations within the study period

Number of referrals to other hospital departments within the study period

Number referrals to general practitioner within the study period

Number of referrals to rehabilitation in the municipality within the study period

Number of infections treated with antibiotics within the study period

Number of telephone contacts to Dept. of Hematology within the study period

Number of participants included from eligible participants

Number of visits completed out of planned visits during intervention

Change in quality of life measured by the European Organization for Research and Treatment of Cancer - quality of life questionnaire C30

Change in symptoms of depression and anxiety measured by the Hospital Anxiety Depression Scale

Change in symptom burden measured by the scale M.D. Andersons Symptom Inventory

Change in HM-PRO developed by The 'Scientific Working Group for QoL and Symptoms,' within the European Hematology Association

Study title	NCT ID	Conditions	Interventions	Eligibility	Organization
Systematic Symptom Identification With Disease Specific PROM to Assess Symptoms of Chronic GVHD in Outpatient Care in Patients Post HSCT	NCT04884204	GVHD, Chronic Hematological M...	Lee Symptom Sca...	18 Years -	Rigshospitalet, Denmark
Systematic Symptom Identification With Disease Specific PROM to Assess Symptoms of Chronic GVHD in Outpatient Care in Patients Post HSCT	NCT04884204	GVHD, Chronic Hematological M...	Lee Symptom Sca...	18 Years -	Rigshospitalet, Denmark
Systematic Symptom Identification With Disease Specific PROM to Assess Symptoms of Chronic GVHD in Outpatient Care in Patients Post HSCT	NCT04884204	GVHD, Chronic Hematological M...	Lee Symptom Sca...	18 Years -	Rigshospitalet, Denmark
Systematic Symptom Identification With Disease Specific PROM to Assess Symptoms of Chronic GVHD in Outpatient Care in Patients Post HSCT	NCT04884204	GVHD, Chronic Hematological M...	Lee Symptom Sca...	18 Years -	Rigshospitalet, Denmark

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