Understanding influences on the uptake of pulmonary rehabilitation in the East of England: an Inclusive Design/mixed-methods study protocol

Abstract

Introduction: 1.2 million people in the UK have chronic obstructive pulmonary disease (COPD) that causes breathlessness, difficulty with daily activities, infections and hospitalisation. Pulmonary rehabilitation (PR), a programme of supervised exercise and education, is recommended for patients with COPD. However, only 1 in 10 of those who need it receive PR. Also, the UK National COPD Audit Programme concluded that the COPD treatment might not be accessible to people with disabilities. This paper applies an Inclusive Design approach to community-based PR service provisions. It aims to inform improvements to the PR service by identifying barriers to the uptake of PR in the COPD care journey in relation to patients' capabilities that can affect their access to PR.

Methods and analysis: The protocol includes four steps. Step 1 will involve interviews with healthcare professionals and patients to gather insight into their experiences and produce a hierarchical task analysis of the COPD care journeys. Step 2 will estimate the service exclusion: the demand of every task on patients' capabilities will be rated by predefined scales, and the proportion of the population excluded from the service will be estimated by an exclusion calculator. Step 3 will identify the challenges of the PR service; a framework analysis will guide the data analysis of the interviews and care journey. Step 4 will propose recommendations to help patients manage their COPD care informed by the challenges identified in step 3 and refine recommendations through interviews and focus groups.

Ethics and dissemination: The Cambridge Central Research Ethics Committee gave the study protocol a positive ethical opinion (17/EE/0136). Study results will be disseminated through peer-reviewed journals, conferences and the British Lung Foundation networks. They will also be fed into a Research for Patient Benefit project on increasing the referral and uptake of PR.

Keywords: COPD; care journey; inclusive design; patient-centred design; patients’ capability; pulmonary rehabilitation.

Figure 1

The main stages in the NHS primary care pathway of COPD rehabilitation are: (1) COPD diagnosis, (2) annual review, (3) referral for pulmonary rehabilitation, (4) assessment for pulmonary rehabilitation and (5) pulmonary rehabilitation programme. COPD, chronic obstructive pulmonary disease; NHS, National Health Service.

Figure 2

Care journeys consist of specific tasks. The first stage of the NHS primary care pathway of COPD rehabilitation, COPD diagnosis, can be further broken down into four tasks: (1) make an appointment with a general practitioner (GP); (2) go to the GP practice; (3) have a GP consultation; and (4) obtain a diagnosis. COPD, chronic obstructive pulmonary disease.

Figure 3

Interaction context-Demand and Capabilities (Persad et al29). The example is of a physical product, but this applies equally to services. Reproduced from www.inclusivedesigntoolkit.com with permission.

Figure 4

Study design. COPD, chronic obstructive pulmonary disease.

Figure 5

Example for care journey represented in a hierarchical task analysis, not all tasks and sub tasks are shown for clarity. COPD, chronic obstructive pulmonary disease; GP, general practitioner.

Figure 6

The standard of measuring hearing (left), reaching forward and up (middle) and speech comprehension (right). Examples of assessing hearing, reach and speech comprehension demand scales are shown.

Figure 7

Demand on capability of making a phone call.

Figure 8

Calculating exclusion (ie, the hearing exclusion for the task ‘make a telephone call’).