Providing tailored, integrated palliative care for COPD patients; Standing strong together.

One person per hour, 10.000 people per year die of Chronic Obstructive Pulmonary Disease (COPD), most of them without any palliative care (the topic is not discussed at all) and with a very low Quality of Life (QoL). COPD is an irreversible, progressive disease with progressive symptom burden. It is associated with an equal or higher burden of disease than other life-threatening diseases such as lung cancer. Moreover, a vast majority of COPD patients (up to 94%) also demonstrates one or more co-morbidities . Timely palliative care in other life-limiting diseases, like lung cancer, has been shown to increase QoL, improve depressed mood, decrease hospitalizations, and increase the number of patients dying at home. However, palliative care for patients with COPD is not yet integrated into ‘standard care’, and when provided. Its’ quality is often poor and not answering the true needs of COPD patients and their informal caregivers. Several challenges exist: when should palliative care be initiated and by whom, how should timely palliative care for this group be structured, what are the most relevant outcome measures, how is continuity of care guaranteed, and how can the most promising models of palliative care for this patient group be implemented. In the past years, several guidelines, tools, models and training modules to improve palliative care provision to this group of patients have been developed, and several scientific studies have been performed in which the above-mentioned challenges were studied. It has been demonstrated that an acute exacerbation COPD (AECOPD) is a successful moment to screen for palliative care needs. Besides, indicators to identify palliative care needs have been developed, as well as a structured approach to provide multidimensional anticipatory care. Building on this knowledge, we will fine-tune, study and implement a multidimensional, integrated palliative care approach for patients with COPD. In the development phase, we will study the needs and wishes of patients, informal caregivers and professionals with the help of semi-structured interviews. Next, based on all existing guidelines, tools, training modules and insights, we will develop an intervention toolbox as well as a training for patients and informal caregivers and a training for healthcare professionals. Training is essential because knowledge level is low and it is important to lower barriers to talk about palliative care. An expert committee consisting of representatives from professional- and patient organizations will monitor the development of this novel approach. This will strengthen existing resources and platforms, and will help build ‘lasting bridges’ between organizations and professionals concerned with the palliative care of end-stage COPD patients. In the implementation phase, the integrated approach will be disseminated in a diverse sample of settings in the Netherlands. Implementation will be guided by the complex intervention implementation framework by Hawe et al. This framework includes the Plan, Do, Check Act, (PDCA) cycle. The implementation phase will contain iterative feedback loops, all involved to facilitate continuous improvement of the content and fit of the approach. Implementation and effect of the approach will be assessed using mixed-methods. Intervention content, fidelity, adaptation, feasibility and acceptability will be measured every six months. Determinants of successful implementation will be inventoried using the Consolidated Framework for Implementation Research (CFIR). A Social Network Analysis (SNA) will be performed yearly to evaluate the extent of and satisfaction with interdisciplinary collaboration. Effects will be measured on the level of the patient, family caregiver, professional and organization level. Outcome measures will include: occurrence and timing of ACP, burden of disease (NCSI, ziektelastmeter COPD), quality of (end-of) life (care), number and duration of hospitalizations and number and severity of exacerbations. During months 36-48, a plan for nationwide dissemination of the approach will be developed and initiated. The knowledge obtained and tools developed will be translated to common practice nationwide, to facilitate professionals to implement and/ or sustain the approach in their local setting. (also) in this phase we make use of the strengths of all parties involved, as well patient organizations and organizations of informal caregivers as in healthcare: respiratory healthcare and (general) palliative care. Together we have large complementary networks and we have access to patients, informal caregivers and healthcare professionals. A Dutch summery is enclosed in the annex.