E84
Conditions
Interventions
Group 1: Interventional = Revised self-help manual "MukoHelp" to address disease acceptance and psychological symptoms in patients with cystic fibrosis.
Group 2: Waiting control group with access to t
Sponsors
Universitätsklinikum Hamburg-Eppendorf
Eligibility
Sex/Gender
All
Age
18 Years to 80 Years
Inclusion criteria
Inclusion criteria: Presence of a diagnosis of cystic fibrosis Desire to improve the mental well-being in coping with the condition Consent to participate in MukoHelp and three online surveys Capacity to provide informed consent Sufficient understanding of the German language
Exclusion criteria
Exclusion criteria: acute suicidality
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The primary outcome parameter will be the Acceptance of Illness Scale, a self-report questionnaire for the assessment of the acceptance of the Illness (T0, T1, T2). | — |
Secondary
| Measure | Time frame |
|---|---|
| Generalized Anxiety Disorder 7 Scale (GAD-7), a self-report questionnaire for the assessment of anxiety symptoms (T0, T1, T2). Patient Health Questionnaire (PHQ-9): The PHQ-9 is the depression module of the PHQ-D and assesses the presence and frequency of nine depressive symptoms (corresponding to the DSM-IV criteria for major depression) during the last two weeks (T0,T1,T2). Self-reported medical parameters: The present weight, the present Fev1 value (Forced Expiratory Pressure in one second) and the present hemoglobin value are assessed by self-report (T0,T1,T2). Cystic Fibrosis Questionnaire Revised (CFQ-R): The CFQ-R assesses the impact on overall health, perceived well-being and symptoms (T0,T1,T2). The Brief Illness Perception Questionnaire BIPQ: rapid assessment of illness perception (T0, T1, T2). Illness Perception Questionnaire (IPQ-R) Appendix M - your views about your illness: measures symptoms which may accompany the illness (T0, T1, T2). Illness Perception Questionnaire (IPQ-R) Appendix N – Behavioral Responses to Illness Questionnaire (BRIQ): How you have managed your illness and the symptoms (T0, T1, T2). Illness Perception Questionnaire (IPQ-R) Appendix Q – Self-Compassion Scale: How you typically act towards yourself in difficult times (T0, T1, T2). Self- Report Behavioural Automaticity Index (SRBAI): The SRBAI measures habit strength, perceptions of treatment adherence, perceived effort of nebulizer treatments, and subjective adherence (T0,T1,T2). Rosenberg Self-Esteem Scale (RSES): The RSES is a questionnaire assessing patients self-esteem (T0,T1,T2). Client satisfaction questionnaire (CSQ): The CSQ is a questionnaire for assessing patients satisfaction with the treatment. (T1). Questionnaire on other treatments: The questionnaire on other treatments assesses at which therapies (e.g., cognitive behavioral therapy) patients participated during the study (T1). Treatment Adherence Perception Questionnaire (TAPQ): The TAPQ ass | — |
Countries
Germany
Contacts
Public ContactFranziska Miegel
Universitätsklinikum Hamburg-Eppendorf
Outcome results
None listed