Table 4.
Recommendations and online consensus survey responses.
| Clinical recommendations | Median (IQR)a |
|---|---|
| Strong agreement, high consensus | |
| Ensure breathlessness services are person-centred and flexible in terms of delivery (e.g. appointment location, time and duration) (C1) | 9 (8–9) |
| Ensure breathlessness services are cross-cutting, drawing on relevant expertise from multiple disciplines, professions and providers (C2) | 9 (8–9) |
| Work towards ensuring breathlessness services has the widest possible geographical coverage and access (e.g. travelling communities, people who are homeless, people living in care/nursing homes) (C3) | 9 (8–9) |
| Acknowledge family and/or informal carers within breathlessness services and, where appropriate, actively encourage their participation in education and management of the patient’s breathlessness (C7) | 9 (8–9) |
| Value symptom management in its own right and be able to deliver, or refer patients for, breathlessness interventions (C9) | 9 (8–9) |
| Share breathlessness management skills with other health and social care professionals and informal carers (C10) | 9 (8–9) |
| Strong agreement, low consensus | |
| Define clear referral criteria for breathlessness services (e.g. limiting breathlessness that persists despite optional management of underlying disease) and share these with potential referrers (C4) | 8 (7–9) |
| Use multiple strategies to raise awareness of breathlessness services among potential referrers and the public (e.g. by engaging with professional bodies, charities or patient groups) (C6) | 8 (7–9) |
| Be alert to, and respond to, under-recognized related issues (e.g. sleep, intimacy, etc.) (C8) | 8 (7–9) |
| Moderate agreement, low consensus | |
| Consider providing the option for patients to self-refer to breathlessness services (C5) | 7 (6–9) |
| Policy recommendations | |
| Strong agreement, low cons | |
| Recognize informal carers in terms of their role, importance and support needs (P7) | 9 (8–9) |
| Strong agreement, low consensus | |
| Complete a needs assessment around breathlessness, map it to the current service provision and consider areas for service improvement (P1) | 8 (7–9) |
| Prioritize supporting development of breathlessness-triggered services, which span all stages of multiple diseases and conditions (P2) | 8 (7–9) |
| Map how breathlessness services could sit within the existing care provision and plans to avoid duplication (P3) | 8 (7–9) |
| Agree, publish and review breathlessness service quality standards as new evidence accumulates (P4) | 8 (7–9) |
| Establish an audit programme for breathlessness services to track impact of services nationally or internationally (P5) | 8 (7–9) |
| Increase public awareness and/or education around breathlessness (e.g. as a sign of disease versus normal exertional symptom) (P6) | 8 (7–9) |
| Provide all health and social care staff with education around breathlessness and its management, ideally starting during vocational and/or undergraduate training and continuing throughout professional lives (P8) | 8 (7–9) |
| Research recommendations | |
| Strong agreement, low consensus | |
| Explore optimal delivery methods of service provider education for breathlessness assessment and management (R16) | 9 (7–9) |
| Understand the impact of breathlessness and associated factors (e.g. fatigue or isolation) on health and social care service use and costs (R1) | 8 (7–9) |
| Establish a core set of outcome measures for clinical practice and research, incorporating validated patient and carer measures (R3) | 8 (7–9) |
| Median (IQR)a | |
| Determine medium- to long-term effects of breathlessness services using follow-up assessments beyond completion of the intervention (R4) | 8 (7–9) |
| Examine and understand models of integrated working between breathlessness services and other providers (e.g. palliative, respiratory, primary, social care) (R5) | 8 (7–9) |
| Assess the clinical and cost-effectiveness of breathlessness services for people unable to engage in cardiac/respiratory rehabilitation services (R6) | 8 (7–9) |
| Assess the clinical and cost-effectiveness of breathlessness services for people who have had their first unplanned hospital admission related to breathlessness (R7) | 8 (7–9) |
| Assess the clinical and cost-effectiveness of the following components within breathlessness services: Carer-focused interventions (R10) | 8 (7–9) |
| Assess need for service provider education around breathlessness (R15) | 8 (7–9) |
| Complete economic modelling (including cost-effectiveness studies) of breathlessness services, which should include health and societal perspectives (R14) | 8 (6.25–9) |
| Moderate agreement, high consensus | |
| Assess the clinical and cost-effectiveness of the following components within breathlessness services: structured exercise training (R9) | 7 (7–8.75) |
| Moderate agreement, low consensus | |
| Assess the clinical and cost-effectiveness of breathlessness services for care/nursing home residents (R8) | 7 (6–9) |
| Convene a representative group of funders/commissioners to establish the type of outcomes they would need to see for breathlessness services (R2) | 7 (6–8) |
| Assess the clinical and cost-effectiveness of the following components within breathlessness services: telehealth (e.g. virtual multidisciplinary team meetings, video resources for patients/carers) (R11) | 7 (6–8) |
| Assess the clinical and cost-effectiveness of the value of the following variations of breathlessness services: As an adjunct to existing services (e.g. pulmonary rehabilitation) (R12) | 7 (6–8) |
| Assess the clinical and cost-effectiveness of the value of the following variations of breathlessness services: group versus individual delivery (R13) | 7 (6–8) |
IQR: interquartile range.
aScores ranged from 1 to 9.