People with a lung disease find it very important to keep control over their illness and well-being
People with a lung disease have to deal with numerous challenges and rules of life as a result of their disease on a daily basis. However, the extent to which people with lung disease are able to cope with these challenges varies widely. The lung patient does not exist, according to the annual survey within the Lung Monitor of the Nivel, with a subsidy from the Lung Fund. Healthcare providers should be aware of this diversity for the treatment and supervision of lung patients.
Huge diversity in the extent to which lung patients can take control of their disease
People with a lung disease find it very important to keep control over their illness and well-being, but the extent to which they are actually able to do this varies enormously per person. This is reflected in the differences between lung patients in perceived quality of life and daily functioning, two important indicators of ‘self-management’. But also the extent to which people can make their wishes with regard to the treatment clear in the conversation with a health care provider, can participate in decisions about treatment choices or are capable of lifestyle activities such as sufficient exercise and quitting smoking, differs between people with a lung disease.
Assessing expectations regarding ‘self-direction’ in lung patients from vulnerable groups recommended
People with lung disease from vulnerable groups are generally less successful in coping with their disease in daily life. This concerns people who are older, people who are less healthy, people who have less knowledge or are less motivated to play a role in their own care, people who are less educated and/or people who have more serious complaints. The research shows that this is due to various reasons: on the one hand, 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 the responsibility with the care provider. As a care provider, it is good to gauge mutual expectations and roles during the treatment process and to make agreements about this.
Customized support essential for successful self-direction
For ‘self-management’, support at the right time is crucial, as is good information and communication about the disease and treatment. However, the research showed that around 40% of people with a lung disease need conversation aids in preparation for the consultation with the health care provider. In addition, 23% of people with lung disease indicated that they received insufficient support with self-management tasks. Finally, 40% of the respondents indicated that they did not have enough useful information to deal with the lung disease independently at home.
E-health can offer support, provided that it is tailored to the patient and care provider
Figures on the use of e-health from our research show that people with a lung disease make limited use of the possibilities to have digital contact with a healthcare provider, for example via digital platforms or apps. Although people with a lung disease are digitally skilled and see the benefits of using e-health, supply and demand are still insufficiently matched, both in the case of the healthcare provider and the patient.
About the research
In July and August 2021, 907 members of the Panel of People with Lung Disease sent a questionnaire. The questionnaire was completed by 680 people; 233 people with COPD, 308 people with asthma and 139 with rare lung diseases (75% response rate). In addition, the questionnaire was completed by 274 members of patient associations for rare lung diseases who are not part of the Panel of People with a Lung Disease, but who had completed the questionnaire once upon request.
Over de Longmonitor
Since 2001, Nivel has carried out an annual measurement with the Lung Monitor, with a subsidy from the Lung Fund. The aim is to provide an overview of the situation of people with lung disease in the Netherlands. The Lung Monitor is conducted among members of the Panel of People with Lung Disease of the Nivel, in which people with a medical diagnosis of asthma and/or COPD and people with a rare lung disease participate. This panel is part of the larger National Panel for the Chronically Ill and Disabled (NPCG) of Nivel. In Dossier Longmonitor you will find all the Nivel research with the Lung Monitor together.
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