Assessing effectiveness of home- based reinforced palliative care Jake Burns, Stephanie Polus, Louise Brereton, Lisa Pfadenhauer, James Chilcott, Susan Ward, Eva Rehfuess

Assessing the effectiveness of complex technologies – setting the stage Complex technology (CT) Methods for assessing CTs – Study design inclusion – Methods for evidence synthesis Guidance is needed which assists the user in deciding upon appropriate methods

INTEGRATE-HTA: Guidance on assessing effectiveness SEARCH AND IDENTIFICATION OF INCLUDED PRIMARY STUDIES Conducting a comprehensive scope of the effectiveness assessment Assessing methodological and clinical heterogeneity in identified evidence base (Conditionally) specifying methods a priori Specifying final decision on methods Gaining a thorough understanding of characteristics of available methods

Effectiveness of rHBPC – assessment Update of Gomes et al – Effectiveness and cost- effectiveness of home palliative care services for adults with advanced illness and their caregivers Focus on reinforced services Alternative methods for evidence synthesis

System- based logic model of reinforced and non- reinforced home-based palliative care (Brereton et al. 2015)

a priori decision Study design inclusion: RCTs, nRCTs, CBAs, ITS Evidence synthesis: harvest plots

Effectiveness of rHBPC – harvest plot

Effectiveness of rHBPC

Harvest Plots Narrative Summary Gap-analysisExpert consultation Post-review Supplemental Methods

Gap-analysis and expert consultations Example outcome Identified aspect Gap-analysis Tailored care Although some of the included interventions did offer some flexibility, it could be that for reinforced palliative care to be effective, targeted and tailored care should be delivered to those patients and caregivers assessed as needing it. Care tailored to the individual patient and caregiver, at least to a certain extent, is seen as the best practice - this could be based on diagnosis, age, illness trajectory, social surrounding, etc, and the recognition of such indicators is important. Being able to assess the needs of patients and/or lay caregivers, and to inform them of (evidence-based) options is essential. The health and social care professional, however, should not make assumptions about what patients and/or caregivers need or want, and they should be involved in these discussions. It is also important to realize that the needs of caregivers and patients are not static, and will likely change over time and trajectory of the illness. This makes repeated assessments through ongoing communication important Expert consultations

Evidence from the five studies originally included in Gomes et al., and the four identified through the updated searches Effects largely mix of no effect, and positive intervention effects Lack of studies assessing effect of caregiver support on patient outcomes highlights need for research Discussion (1)

Gap analysis and expert consultations complemented evidence from the primary studies. – tailored care for patients and informal caregivers – the outcomes chosen in the primary studies, and – the difficulties in conducting experimental research for such interventions Discussion (2)

References BURNS, J., CHILCOTT, J.B., VAN HOORN, R., KIEVIT, W., REHFUESS, E. (2015) Guidance to assess effectiveness aspects. In: LYSDAHL, K.B., MOZYGEMBA, K., BURNS, J., CHILCOTT, J.B., BRÖNNEKE, J.B., HOFMANN, B. (eds.). Guidance for assessing effectiveness, economic aspects, ethical aspects, socio-cultural aspects and legal aspects in complex technologies [Online]. Available from: BRERETON, L., WAHLSTER, P., LYSDAHL, K.B., MOZYGEMBA, K., BURNS, J., CHILCOTT, J.B., WARD, S., BRÖNNEKE, J.B., TUMMERS, M., VAN HOORN, R., VAN DER WILT, G.J., PFADENHAUER, L., GERHARDUS, A., ROWHER, A., REHFUESS, E., OORTWIJN, W., REFOLO, P., SACCHINI, D., LEPPERT, W., BLAZEVICIENE, A., PRESTON, L., CLARK, J., GOYDER, E., ON BEHALF OF THE INTEGRATE-HTA TEAM (2015) Integrated assessment of home based palliative care with and without reinforced caregiver support: ‘A demonstration of INTEGRATE-HTA methodological guidances’ [Online].Available from: