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ABSTRACT

TIIVISTELMÄ

ACKNOWLEDGEMENTS

CONTENTS

LIST OF ORIGINAL PUBLICATIONS

ABBREVIATIONS

1. INTRODUCTION

2. REVIEW OF THE LITERATURE

2.1IPF

2.1.1 Definition and clinical presentation

2.1.2 Prevalence and incidence

2.1.3 Risk factors

2.1.4 Comorbidities

2.1.5 Mortality and prognostic factors

2.1.6 Diagnosis

2.1.7 Clinical course of IPF

2.1.8 Treatment of IPF

2.1.8.1 Lung transplantation

2.1.8.2 Pharmacological treatment

2.1.8.2.1 Antifibrotics

2.1.8.2.2 Other medications

2.1.8.3 Non-pharmacological treatment

2.1.9 IPF registries

2.1.9.1 FinnishIPF

2.2SYMPTOMS AND SYMPTOM MANAGEMENT IN RESPIRATORY DISEASES

2.2.1 Dyspnoea

2.2.2 Cough

2.2.3 Tiredness and fatigue

2.2.4 Pain

2.2.5 Anxiety and depression

2.3HRQOL

2.3.1 Measures of HRQOL

2.3.1.1 General measures

2.3.1.2 Disease-specific measures

2.3.1.3 Utility measurements

2.3.1.4 Pulmonary-specific tools

2.3.1.5 Palliative care measurements

2.3.1.6 Symptom measurements

2.3.2 HRQOL in IPF patients

2.3.3 HRQOL of COPD and cancer patients

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2.4PALLIATIVE CARE

2.4.2 Psychosocial support

2.4.3 Early-integrated palliative care

2.4.4 Palliative care in IPF

2.4.4.1 EOL care for IPF patients

2.4.4.2 Advance care planning

2.5HYPOTHESES

3. AIMS

4. PATIENTS, MATERIALS AND METHODS

4.1STUDY POPULATION

4.2METHODS

4.2.1 Study I

4.2.2 Studies II and III

4.2.2.1 Patient and disease characteristics

4.2.2.2 HRQOL

4.2.2.3 Symptoms

4.2.3 Ethical aspects

4.2.4 Statistical methods

5. RESULTS AND DISCUSSION

5.1PATIENTS

5.1.1 Participation rate

5.1.2 Patient characteristics

5.2EOL CARE

5.3SYMPTOMS

5.4HEALTH-RELATED QUALITY OF LIFE

5.5GENERAL DISCUSSION

6. IMPLICATIONS

7. CONCLUSIONS

REFERENCES

ORIGINAL PUBLICATIONS

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