19 Tackling the rhetoric: an evidence-based support needs tool to enable supportive care in advanced non-malignant disease

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Abstract

Introduction

Delivery of supportive and palliative care to patients with advanced non-malignant diseases such as COPD is hampered by the challenge of prognostication and unpredictability of disease trajectories. An alternative approach is delivery of care and support in response to patient-identified need.

Aim

This study aimed to develop a support needs tool for patients with advanced COPD, to enable patients to identify and express their support needs.

Methods

Two-stage qualitative study. Stage 1: domains of support need in advanced COPD were identified through a rapid review of the literature, analysis of qualitative data from the Living with Breathlessness Study (n=20 purposively sampled patients with advanced COPD) and patient focus groups. Stage 2: the draft Support Needs Approach for Patients (SNAP) tool was developed from the identified domains of support need, then reviewed and refined in stakeholder workshops to ensure acceptability and suitability.

Results

A comprehensive set of evidence-based support domains were identified and reformulated as questions. The draft tool asks patients to consider whether they need more support in relation to 16 broad areas of support need e.g. “knowing what to expect in the future” and “getting out and about”. Stakeholders broadly endorsed the content and wording of the draft SNAP tool and the proposed person-centred approach which it underpins.

Discussion

The SNAP tool has the potential to help patients with advanced COPD, and other non-malignant diseases, identify and express their support needs to enable delivery of supportive care. Follow-on work is testing tool validity and feasibility of the approach.

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