Life situation among persons living with inflammatory bowel disease

................................................................................................................... 1 LIST OF PAPERS .......................................................................................................... 3 ABBREVIATIONS ........................................................................................................ 4 ACKNOWLEDGEMENTS ............................................................................................ 5 INTRODUCTION .......................................................................................................... 7 BACKGROUND ............................................................................................................ 9 Historical background ................................................................................................. 9 Diagnosis ..................................................................................................................... 9 Course of the disease and symptoms ........................................................................ 10 Pathogenesis .............................................................................................................. 10 Epidemiology ............................................................................................................ 11 Associated health problems ...................................................................................... 11 Treatment .................................................................................................................. 11 Impact on life situation ............................................................................................. 12 Disease related knowledge ........................................................................................ 14 Quality of care ........................................................................................................... 16 Assessing quality of care .......................................................................................... 17 Rationale for this thesis ............................................................................................. 19 AIMS ............................................................................................................................. 20 General aim ............................................................................................................... 20 Specific aims ............................................................................................................. 20 METHOD...................................................................................................................... 21 Design ....................................................................................................................... 21 Overview of the studies ............................................................................................ 22 Study I ....................................................................................................................... 22 Study II ...................................................................................................................... 22 Study III .................................................................................................................... 22 Participants and sample size ..................................................................................... 23 Setting and procedure ............................................................................................... 23 Data Collection ......................................................................................................... 24 Demographic data ................................................................................................. 24 Interviews (I, II) .................................................................................................... 25 Study I ................................................................................................................... 25 Study II .................................................................................................................. 25 Questionnaire (III) ................................................................................................ 26 QoC-IBD ............................................................................................................... 26 Phase I – Question generation .............................................................................. 26 Phase II – Patients’ and professionals’ evaluation................................................ 27 Phase III Measurement evaluation ..................................................................... 28 QOUTE-IBD ......................................................................................................... 28 Data analysis ............................................................................................................. 29 Qualitative analysis (I, II) ..................................................................................... 29 Qualitative content analysis .................................................................................. 29 Critical incident techniques .................................................................................. 29 Focus group interviews ......................................................................................... 30 Statistical analysis ................................................................................................. 32 Ethical considerations ............................................................................................... 32 RESULTS ..................................................................................................................... 33 Characteristics of the participants ............................................................................. 33 When daily life becomes affected by symptom burden ............................................ 33 The importance of disease related knowledge .......................................................... 34 Being met with trust and respect ............................................................................... 35 Being an active part of healthcare decisions ............................................................. 36 Important aspects of quality of care .......................................................................... 38 DISCUSSION ............................................................................................................... 41 When daily life become affected by symptom burden ............................................. 41 The importance of disease related knowledge .......................................................... 41 Being met with trust and respect ............................................................................... 43 Being an active part of healthcare decisions ............................................................. 44 Important aspects of quality of care .......................................................................... 45 Methodological discussion........................................................................................ 46 Validity and reliability .......................................................................................... 46 Drop out and question non response study IV ...................................................... 48 Conclusions ............................................................................................................... 50 Clinical implication ................................................................................................... 50 Future research .......................................................................................................... 51 POPULÄRVETENSKAPLIG SAMMANFATTNING ............................................... 52 REFERENCES ............................................................................................................. 54