For successful ‘self-management’, support for lung patients at the right time is crucial, as is good information and communication about the disease and treatment, concludes Nivel in the annual Lung Monitor.
Lung patients find it very important to keep control of their illness and well-being in their own hands, but the extent to which they are able to do this varies enormously per patient. The extent to which patients can make their wishes with regard to treatment clear in the conversation with a healthcare provider, can participate in decision-making about treatment or are capable of lifestyle activities also differs between patients.
Almost a thousand respondents completed a questionnaire for this study: COPD and asthma patients, patients with a rare lung disease and members of patient associations.
Vulnerable groups
According to the researchers, lung patients from vulnerable groups are generally less successful in coping with their disease in daily life. This concerns, among others, the elderly, patients with a lower education and patients who are less health-skilled or less motivated. This is because they often feel less supported and encouraged by care providers to take control of their own lives.
On the other hand, lung patients from these vulnerable groups do not always want to be in control of their care and prefer to leave that responsibility with the care provider. It would therefore be good, according to Nivel, if care providers gauge mutual expectations and roles during the treatment process and make agreements about this.
Insufficient support
Furthermore, 40% of the lung patients indicate that they need conversation aids in preparation for the consultation with the care provider. 23% feel that they do not receive sufficient support with self-management tasks, and 40% do not have enough useful information to deal with a lung disease independently at home.
Figures on the use of e-health show that lung patients make limited use of the possibilities of having digital contact with a healthcare provider, for example via digital platforms on apps. Although patients with a lung disease are digitally skilled and also see the benefits of e-health, supply and demand are still insufficiently matched.
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