Individualising Chronic Care Management by Analysing Patients’ Needs – A Mixed Method Approach

Background: Modern health systems are increasingly faced with the challenge to provide effective, affordable and accessible health care for people with chronic conditions. As evidence on the specific unmet needs and their impact on health outcomes is limited, practical research is needed to tailor chronic care to individual needs of patients with diabetes. Qualitative approaches to describe professional and informal caregiving will support understanding the complexity of chronic care. Results are intended to provide practical recommendations to be used for systematic implementation of sustainable chronic care models. Method: A mixed method study was conducted. A standardised survey (n = 92) of experts in chronic care using mail responses to open-ended questions was conducted to analyse existing chronic care programs focusing on effective, problematic and missing components. An expert workshop (n = 22) of professionals and scientists of a European funded research project MANAGE CARE was used to define a limited number of unmet needs and priorities of elderly patients with type 2 diabetes mellitus and comorbidities. This list was validated and ranked using a multilingual online survey (n = 650). Participants of the online survey included patients, health care professionals and other stakeholders from 56 countries. Results: The survey indicated that current care models need to be improved in terms of financial support, case management and the consideration of social care. The expert workshop identified 150 patient needs which were summarised in 13 needs dimensions. The online survey of these pre-defined dimensions revealed that financial issues, education of both patients and professionals, availability of services as well as health promotion are the most important unmet needs for both patients and professionals. Conclusion: The study uncovered competing demands which are not limited to medical conditions. The findings emphasise that future care models need to focus stronger on individual patient needs and promote their active involvement in co-design and implementation. Future research is needed to develop new chronic care models providing evidence-based and practical implications for the regional care setting

Lung MRI and impairment of diaphragmatic function in Pompe disease

Background: Pompe disease is a progressive metabolic myopathy. Involvement of respiratory muscles leads to progressive pulmonary dysfunction, particularly in supine position. Diaphragmatic weakness is considered to be the most important component. Standard spirometry is to some extent indicative but provides too little insight into diaphragmatic dynamics. We used lung MRI to study diaphragmatic and chest-wall movements in Pompe disease. Methods: In ten adult Pompe patients and six volunteers, we acquired two static spirometer-controlled MRI scans during maximum inspiration and expiration. Images were manually segmented. After normalization for lung size, changes in lung dimensions between inspiration and expiration were used for analysis; normalization was based on the cranial-caudal length ratio (representing vertical diaphragmatic displacement), and the anterior-posterior and left-right length ratios (representing chest-wall movements due to thoracic muscles). Results: We observed striking dysfunction of the diaphragm in Pompe patients; in some patients the diaphragm did not show any displacement. Patients had smaller cranial-caudal length ratios than volunteers (p < 0.001), indicating diaphragmatic weakness. This variable strongly correlated with forced vital capacity in supine position (r = 0.88) and postural drop (r = 0.89). While anterior-posterior length ratios also differed between patients and volunteers (p = 0.04), left-right length ratios did not (p = 0.1). Conclusions: MRI is an innovative tool to visualize diaphragmatic dynamics in Pompe patients and to study chest-walland diaphragmatic movements in more detail. Our data indicate that diaphragmatic displacement may be severely disturbed in patients with Pompe disease