Monthly Archives: January 2019

Challenges and support service preferences of informal caregivers of people with systemic sclerosis: a cross-sectional survey






Purpose: To evaluate the importance of different challenges experienced by informal caregivers to persons with systemic sclerosis (SSc) and identify priorities for support services that could be developed.Materials and Methods: Caregivers of people with SSc from three continents completed an online questionnaire to rate the importance of possible caregiver challenges and likelihood of using different forms of support services. Importance of challenges and likelihood of using support services… Continue reading

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Assessing the Needs and Perspectives of Patients With Asthma and Chronic Obstructive Pulmonary Disease on Patient Web Portals: Focus Group Study.






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Assessing the Needs and Perspectives of Patients With Asthma and Chronic Obstructive Pulmonary Disease on Patient Web Portals: Focus Group Study.
JMIR Form Res. 2018 Nov 22;2(2):e22
Authors: Metting E… Continue reading

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Assessing the Needs and Perspectives of Patients With Asthma and Chronic Obstructive Pulmonary Disease on Patient Web Portals: Focus Group Study






CONCLUSIONS: Participants were positive about PWPs and considered them a logical step. Today, most patients tend to be better educated and have internet access, while also being more assertive and better informed about their disease. A PWP could support these patients. Our participants also provided practical suggestions for implementation in current and future PWP developments. The next step will be to develop a portal based on these recommendations and assess whether it meets the needs of… Continue reading

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Pace and determinants of implementation of the self-management of well-being group intervention: a multilevel observational study






CONCLUSIONS: This implementation study revealed a strong dependency between professionals and organizations. Results showed that a majority of professionals used the SMW intervention in about 8 months. When the dependency between professionals and organization was taken into account, the professionals’ perception of compatibility was the only remaining determinant of implementation on the professional level. Organizational size and managers’ perception of ‘innovation-task orientation fit’ were… Continue reading

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A validated PROM in genetic counselling: the psychometric properties of the Dutch version of the Genetic Counselling Outcome Scale






Patient empowerment has been identified as a key outcome goal in genetic counselling, and a patient reported outcome measure (PROM) has been developed to measure empowerment in genetic services: the Genetic Counselling Outcome Scale (GCOS). Here we validate the GCOS for a large and diverse Dutch study sample of 2194 patients referred to two clinical genetic centres for counselling about a wide range of conditions (heart disease, neurological disorders, cancer, congenital syndromes, intellectual… Continue reading

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Influence of significant others on work participation of individuals with chronic diseases: a systematic review






CONCLUSIONS: Our findings show that several cognitions and behaviours of SOs can facilitate or hinder work participation of individuals with a chronic disease. Intervening on these factors by involving SOs in disability prevention and return to work intervention strategies may be beneficial. More prognostic studies are needed, as the current evidence is mostly based on qualitative studies. Continue reading

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Targeted therapy of underlying conditions improves quality of life in patients with persistent atrial fibrillation: results of the RACE 3 study






CONCLUSION: A strategy aiming to treat underlying conditions improved QoL more compared with conventional therapy in patients with early persistent AF and HF. Its benefit was even observed in patients in AF at 1 year. Continue reading

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