Patients advise their peers on how to cope with their illness in daily life on online support groups. To date, no efforts have been made to automatically extract recommended coping strategies from... Show morePatients advise their peers on how to cope with their illness in daily life on online support groups. To date, no efforts have been made to automatically extract recommended coping strategies from online patient discussion groups. We introduce this new task, which poses a number of challenges including complex, long entities, a large long-tailed label space, and cross-document relations. We present an initial ontology for coping strategies as a starting point for future research on coping strategies, and the first end-to-end pipeline for extracting coping strategies for side effects. We also compared two possible computational solutions for this novel and highly challenging task; multi-label classification and named entity recognition (NER) with entity linking (EL). We evaluated our methods on the discussion forum from the Facebook group of the worldwide patient support organization ‘GIST support international’ (GSI); GIST support international donated the data to us. We found that coping strategy extraction is difficult and both methods attain limited performance (measured with score) on held out test sets; multi-label classification outperforms NER+EL ( vs ). An inspection of the multi-label classification output revealed that for some of the incorrect predictions, the reference label is close to the predicted label in the ontology (e.g. the predicted label ‘juice’ instead of the more specific reference label ‘grapefruit juice’). Performance increased to when we evaluated at a coarser level of the ontology. We conclude that our pipeline can be used in a semi-automatic setting, in interaction with domain experts to discover coping strategies for side effects from a patient forum. For example, we found that patients recommend ginger tea for nausea and magnesium and potassium supplements for cramps. This information can be used as input for patient surveys or clinical studies. Show less
Patients share valuable advice and experiences with their peers in online patient discussion groups. These uncensored experiences can provide a complementaryperspective to that of the health... Show morePatients share valuable advice and experiences with their peers in online patient discussion groups. These uncensored experiences can provide a complementaryperspective to that of the health professional and thereby yield novel hypotheses which could be tested in further rigorous medical research. This thesis focuses on the development of automatic extraction methods to harvest these patient experiences from online patient forums using text mining techniques. We also examine the complementary value of these patient-reported outcomes to traditional sources of medical knowledge for scientific hypothesis generation. Specifically, we focus on the extraction of adverse drug events (i.e., side effects) and coping strategies for dealing with adverse drug events. Show less
In this thesis we aimed to investigate the burden of axial spondyloarthritis (axSpA) in an early phase. We have emphasized three main themes: (1) the value of a positive family history of SpA; (2)... Show moreIn this thesis we aimed to investigate the burden of axial spondyloarthritis (axSpA) in an early phase. We have emphasized three main themes: (1) the value of a positive family history of SpA; (2) the impact of axSpA on health outcomes in an early phase of axSpA; and (3) illness perceptions and coping strategies of patients with axSpA.We have shown that when broad HLA-B27 testing is not useful, the presence of a positive family history of axSpA or uveitis could be used to predict HLA-B27 positivity in patients suspected of axSpA. We have demonstrated that health-related quality of life work productivity, and daily activities are seriously impacted even in the earliest phase of the axSpA and remain substantial over time. We have further shown that illness perceptions are important in the relationship between back pain and health outcomes in patients with axSpA. Our results suggest that illness perceptions and coping strategies do not change spontaneously and are rather independent of a decrease in disease status in patients with early axSpA.The knowledge and insights of this thesis could help us in making a timely diagnosis, providing treatment sooner, and exploring additional treatment options, which in turn could hopefully reduce the burden of axSpA. Show less
The aim of this dissertation is to explore what adaptations are needed to improve the fit of a parenting intervention for use in multi-ethnic disadvantaged neighborhoods. A bottom-up approach is... Show moreThe aim of this dissertation is to explore what adaptations are needed to improve the fit of a parenting intervention for use in multi-ethnic disadvantaged neighborhoods. A bottom-up approach is used to assess parents’ perspectives regarding their parenting experiences, and to identify their needs and stressors. Data is collected among parents with an ethnic minority and low socioeconomic status background. Each chapter is a part of a stepwise approach that led to the selection of an intervention, and its adaptation for and evaluation in a multi-ethnic disadvantaged neighbourhood. It was found that a focus on coping strategies to handle stress and unhelpful emotions is not a standard theme in parenting interventions, while this would be beneficial for ethnic minority and low SES parents. The intervention module ‘Coping with stress and unhelpful emotions’ was developed to be incorporated into an existing parenting intervention to assist parents in handling their emotions and decreasing the impact of stress, and simultaneously regulating their parenting behavior. An evaluation study showed the relevance of this in-built module for parents living in multi-ethnic disadvantaged neighborhoods and also yielded recommendations to further improve the module. Show less
Nowadays, pituitary adenomas can be appropriately treated, but patients continue to report impaired quality of life (QoL) despite long-term remission or cure. In patients with Cushing__s disease,... Show moreNowadays, pituitary adenomas can be appropriately treated, but patients continue to report impaired quality of life (QoL) despite long-term remission or cure. In patients with Cushing__s disease, Cushing__s syndrome or acromegaly, doctors should be aware of subtle cognitive impairments and the increased prevalence of psychopathology and maladaptive personality traits after long-term remission. In addition, these patients use ineffective coping strategies and have negative illness perceptions that are not always correct. Patients are labeled __cured__, but still experience chronic and persisting impairments due to their pituitary disease. Doctors should consider informing patients better about the long-term consequences and act as a guide in this __acceptance process__ of the patient. In addition, a multi-disciplinary team of endocrinologists, psychologists, and community health workers might also help patients in accepting and dealing with the consequences of their pituitary disease. Show less
