Geana Paula Kurita, Inge Eidemak, Tacjana Pressier, Sille Larsen, Per Sjøgren, Camilla Lykke
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Palliative care needs in cystic fibrosis: hospital survey.
Background: Cystic fibrosis (CF) is an incurable, progressive disease that affects multiple organs, causing burdensome symptoms. This study aimed to explore the palliative care needs in patients with CF, focusing on health-related quality of life (HRQOL), fatigue, anxiety and depression.
Methods: From October 2019 to March 2020, a cross-sectional questionnaire survey was conducted with outpatients with CF at the Infectious Medicine Clinic in a Danish University Hospital.
Results: 130 patients completed at least one questionnaire. Mean age was 35.5 years (SD 11.5), with 51.7% males. Charlson's comorbidity index mean score was 1.3 (SD 1.6). Patients with CF had significantly lower scores in general health, vitality, social functioning, role emotional and mental health compared with the Danish population. Mean fatigue score of patients was 50.9 (SD 16.2), with the highest scores in general fatigue, physical fatigue and reduced activity. Additionally, 33% indicated anxiety and 19.5% depression. 51.6% were treated with Tezacaftor/Ivacaftor or Lumacaftor/Ivacaftor.
Conclusion: This study found poor HRQOL and burdensome symptoms of fatigue, anxiety and depression in patients with CF compared with the general Danish population. The results suggest that systematic assessments and palliative care interventions should be integrated into routine CF care.
期刊介绍：
Published quarterly in print and continuously online, BMJ Supportive & Palliative Care aims to connect many disciplines and specialties throughout the world by providing high quality, clinically relevant research, reviews, comment, information and news of international importance.
We hold an inclusive view of supportive and palliative care research and we are able to call on expertise to critique the whole range of methodologies within the subject, including those working in transitional research, clinical trials, epidemiology, behavioural sciences, ethics and health service research. Articles with relevance to clinical practice and clinical service development will be considered for publication.
In an international context, many different categories of clinician and healthcare workers do clinical work associated with palliative medicine, specialist or generalist palliative care, supportive care, psychosocial-oncology and end of life care. We wish to engage many specialties, not only those traditionally associated with supportive and palliative care. We hope to extend the readership to doctors, nurses, other healthcare workers and researchers in medical and surgical specialties, including but not limited to cardiology, gastroenterology, geriatrics, neurology, oncology, paediatrics, primary care, psychiatry, psychology, renal medicine, respiratory medicine.
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