The major challenges of COPD care are guiding patients with the consequences of their disease, reducing impact of symptoms, improving participation in daily activities and improving health related quality of life (HRQoL). Against this background the scope of this thesis is how to improve the effectiveness of primary care nursing to reduce the impact of COPD in terms of improving the patients’ quality of life and daily activities. A biopsychosocial perspective served as the framework for the studies in which patient outcomes and points of action that can guide nursing interventions were investigated. Based on these insights a comprehensive nursing intervention was developed and evaluated.
A systematic review concerning the content and psychometric properties of available instruments to measure HRQoL in COPD patients showed that there is strong psychometric evidence for disease specific instruments. However, an optimal instrument could not be identified. Therefore, the decision to choose one instrument over another should be guided by the results to be obtained in a study or in clinical practice in relation to the domains included in the instrument and the psychometric properties.
Within the context of COPD care and research it is essential not only to measure physical capacity, but also self-reported activities in daily life. The Functional Performance Inventory (FPI) is an instrument which measures these activities that individuals perform in their daily life. The original English version of the FPI was translated and validated in Dutch patients. The results show that the translated version of the FPI is reliable and reproducible. However, further evaluation of its psychometric properties is recommended.
Looking for points of action that can guide nursing interventions in COPD care, a study concerning the relationship between psychological factors and HRQoL was performed. The results show that illness perceptions, depressive symptoms and dyspnea are related to HRQoL. Moreover, the study confirmed that more objective measures, such as airflow limitation did not contribute to the individual differences in HRQoL. Based on these findings a comprehensive nursing intervention that takes into account psychosocial aspects, especially illness perceptions was developed. This resulted in an intervention which translates the theory and evidence regarding illness perceptions and HRQoL into a practical guide for nurses to provide individualized COPD care (COPD-GRIP intervention).
In an explanatory mixed-method study, nested within a cluster randomized trial, the barriers and facilitators with the COPD-GRIP intervention as experienced by nurses were evaluated. The study revealed that the intervention, proved to be a feasible tool for providing tailored, patient-centered care. A qualitative interview study in COPD patients to evaluate their experiences regarding the COPD-GRIP intervention showed that the intervention made them feel “being listened to and being acknowledged”, it improved their “awareness” of the disease and it helped them “making lifestyle changes”.
The results of a cluster randomized trial aiming to evaluate the effectiveness of the intervention, revealed that the intervention could not improve health status, HRQoL and daily activities. The COPD-GRIP intervention did influence the patient’s ability to control the disease and health- related behaviours in the short term.
Main Conclusions:
• Although the enormous number of valid and reliable disease specific instruments available to measure health related Quality of life in COPD patients, it could be questioned if the existing instruments are able to capture the individual experiences and desired outcomes of COPD patients.
• Psychological aspects, especially illness perceptions contribute to individual differences in health related quality of life in COPD patients, where more objective measures , such as airflow limitation do not contribute.
• The developed COPD-GRIP intervention, that takes illness perceptions into account provides nurses with a structured tool to address illness perceptions in daily clinical care.
• An illness perception intervention applied by nurses has benefits in improving health behaviour in the short term. Applying the intervention made patients feel being listened to and being acknowledged. The intervention does not improve health status and health related quality of life.
Main recommendations
• Nurses should be at the forefront of patient care for COPD patients.
• A vital aspect of this care is to understand how patients perceive their illness and acknowledge individual differences in COPD patients, as described by patients themselves.
• To address these issues, nurses can use a comprehensive nursing intervention focusing on illness perceptions.
• There is an urgent need for reconsideration of nursing and patient outcome measures to capture individual experiences and differences.