An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial
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BACKGROUND: Breathlessness is a common and distressing symptom, which increases in many diseases as they progress and is difficult to manage. We assessed the effectiveness of early palliative care integrated with respiratory services for patients with advanced disease and refractory breathlessness. METHODS: In this single-blind randomised trial, we enrolled consecutive adults with refractory breathlessness and advanced disease from three large teaching hospitals and via general practitioners in South London. We randomly allocated (1:1) patients to receive either a breathlessness support service or usual care. Randomisation was computer generated centrally by the independent Clinical Trials Unit in a 1:1 ratio, by minimisation to balance four potential confounders: cancer versus non-cancer, breathlessness severity, presence of an informal caregiver, and ethnicity. The breathlessness support service was a short-term, single point of access service integrating palliative care, respiratory medicine, physiotherapy, and occupational therapy. Research interviewers were masked as to which patients were in the treatment group. Our primary outcome was patient-reported breathlessness mastery, a quality of life domain in the Chronic Respiratory Disease Questionnaire, at 6 weeks. All analyses were by intention to treat. Survival was a safety endpoint. This trial is registered with ClinicalTrials.gov, number NCT01165034. FINDINGS: Between Oct 22, 2010 and Sept 28, 2012, 105 consenting patients were randomly assigned (53 to breathlessness support service and 52 to usual care). 83 of 105 (78%) patients completed the assessment at week 6. Mastery in the breathlessness support service group improved compared with the control (mean difference 0·58, 95% CI 0·01-1·15, p=0·048; effect size 0·44). Sensitivity analysis found similar results. Survival rate from randomisation to 6 months was better in the breathlessness support service group than in the control group (50 of 53 [94%] vs 39 of 52 [75%]) and in overall survival (generalised Wilcoxon 3·90, p=0·048). Survival differences were significant for patients with chronic obstructive pulmonary disease and interstitial lung disease but not cancer. INTERPRETATION: The breathlessness support service improved breathlessness mastery. Our findings provide robust evidence to support the early integration of palliative care for patients with diseases other than cancer and breathlessness as well as those with cancer. The improvement in survival requires further investigation. FUNDING: UK National Institute for Health Research (NIHR) and Cicely Saunders International.
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Breathlessness services providing predominantly non-pharmacological approaches are effective, cost-effective, and improve distress from breathlessness, mastery, quality of life, and survival.
“Such services provide a brief, cost-effective intervention that impacts positively on distress from breathlessness, mastery, quality of life, and even survival.”
From The Breathing, Thinking, Functioning clinical model: a proposal to facilitate evidence-based breathlessness management in chronic respiratory disease (2017) · cites this paper as [26]
The Summary (p. 2) reports improved breathlessness mastery and better survival in the service group, while cautioning that the survival finding needs further investigation. The Results (pp. 6–7) report no significant between-group differences in other patient-reported outcomes, including quality of life, and no significant difference in formal care costs. The paper therefore supports mastery and an exploratory survival finding, but does not establish improved breathlessness distress or quality of life relative to usual care, or demonstrate cost-effectiveness. (LLM, conf=0.88)
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The Role of Palliative Care in COPD
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Self-citationIntegrated respiratory and palliative care may improve outcomes in advanced lung disease
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The management of chronic breathlessness in patients with advanced and terminal illness
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Team-based Palliative and End-of-life Care for Heart Failure
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Understanding new models of integrated care in developed countries: a systematic review
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Improving the quality of life of people with advanced respiratory disease and severe breathlessness
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Self-citationComprehensive Supportive Care for Patients with Fibrosing Interstitial Lung Disease
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Palliative care and Parkinson's disease: Meeting summary and recommendations for clinical research
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Zentner, D., Celermajer, D. S., Gentles, T. L., d’Udekem, Y., Ayer, J. G., Blue, G. M., Bridgman, C., Burchill, L. J., Cheung, M. M. H., Cordina, R., et al. (2019) · Heart Lung and Circulation · doi:10.1016/j.hlc.2019.09.010 · Cited by 71 · see citing works
The Importance of Self-Management in the Context of Personalized Care in COPD
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Peeler, A., Afolabi, O. A., Adcock, M., Evans, C., Nkhoma, K. B., van Breevoort, D., Farrant, L., & Harding, R. (2024) · Palliative Medicine · doi:10.1177/02692163241248324 · Cited by 79 · see citing works
Johnson, M. J., Kanaan, M., Richardson, G., Nabb, S., Torgerson, D., English, A., Barton, R., & Booth, S. (2015) · BMC Medicine · doi:10.1186/s12916-015-0453-x · Cited by 68 · see citing works
Self-citationEarly integration of palliative care into oncology: evidence, challenges and barriers.
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Rajala, K., Lehto, J. T., Sutinen, E., Kautiainen, H., Myllärniemi, M., & Saarto, T. (2018) · BMC Pulmonary Medicine · doi:10.1186/s12890-018-0738-x · Cited by 67 · see citing works
Henson, L. A., Higginson, I. J., Gao, W., & BuildCARE, O. B. O. (2017) · Palliative Medicine · doi:10.1177/0269216317713428 · Cited by 66 · see citing works
Self-citationDexamethasone for Dyspnea in Cancer Patients: A Pilot Double-Blind, Randomized, Controlled Trial
Hui, D., Kilgore, K. L., Frisbee‐Hume, S. E., Park, M., Tsao, A. S., Guay, M. D., Lu, C. S., William, W., Pisters, K. M. W., Eapen, G. A., et al. (2016) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2015.10.023 · Cited by 65 · see citing works
Sleeman, K. E., Timms, A., Gillam, J., Anderson, J. E., Harding, R., Sampson, E. L., & Evans, C. (2021) · BMC Palliative Care · doi:10.1186/s12904-021-00802-6 · Cited by 66 · see citing works
Swan, F., Newey, A., Bland, M., Allgar, V. L., Booth, S., Bausewein, C., Yorke, J., & Johnson, M. J. (2019) · Palliative Medicine · doi:10.1177/0269216319835393 · Cited by 64 · see citing works
Self-citationDatla, S., Verberkt, C. A., Hoye, A., Janssen, D. J. A., & Johnson, M. J. (2019) · Palliative Medicine · doi:10.1177/0269216319859148 · Cited by 64 · see citing works
Barriers and facilitators influencing death at home: A meta-ethnography
Wahid, A. S., Sayma, M., Jamshaid, S., Kerwat, D. R., Oyewole, F., Saleh, D., Ahmed, A., Cox, B. M., Perry, C., & Payne, S. A. (2017) · Palliative Medicine · doi:10.1177/0269216317713427 · Cited by 63 · see citing works
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Nottelmann, L., Grøenvold, M., Vejlgaard, T. B., Petersen, M. A., & Jensen, L. H. (2021) · Palliative Medicine · doi:10.1177/02692163211015574 · Cited by 63 · see citing works
Breathlessness services as a new model of support for patients with respiratory disease
Bausewein, C., Schunk, M. V., Schumacher, P., Dittmer, J., Bolzani, A., & Booth, S. (2017) · Chronic Respiratory Disease · doi:10.1177/1479972317721557 · Cited by 60 · see citing works
Self-citationPalliative Care for Stroke Patients and Their Families: Barriers for Implementation
Steigleder, T., Kollmar, R., & Ostgathe, C. (2019) · Frontiers in Neurology · doi:10.3389/fneur.2019.00164 · Cited by 63 · see citing works
Aslakson, R. A., Reinke, L. F., Cox, C. E., Kross, E. K., Benzo, R. P., & Curtis, J. R. (2017) · Journal of Palliative Medicine · doi:10.1089/jpm.2016.0567 · Cited by 67 · see citing works
Palliative care and prognosis in COPD: a systematic review with a validation cohort
Almagro, P., Yun, S., Sangil, A., Rodríguez‐Carballeira, M., Mariné, M., Landete, P., Soler‐Cataluña, J. J., Soriano, J. B., & Miravitlles, M. (2017) · International Journal of COPD · doi:10.2147/copd.s135657 · Cited by 61 · see citing works
Kimbell, B., Murray, S. A., Byrne, H., Baird, A., Hayes, P. C., MacGilchrist, A., Finucane, A., Young, P. B., O’Carroll, R. E., Weir, C. J., et al. (2018) · Palliative Medicine · doi:10.1177/0269216318760441 · Cited by 61 · see citing works
Sertraline in symptomatic chronic breathlessness: a double blind, randomised trial
Currow, D. C., Ekström, M. P., Louw, S., Hill, J., Fazekas, B. S., Clark, K., Davidson, P. M., McDonald, C. F., Sajkov, D., McCaffrey, N., et al. (2018) · European Respiratory Journal · doi:10.1183/13993003.01270-2018 · Cited by 60 · see citing works
Psychosocial consequences of living with breathlessness due to advanced disease
Janssen, D. J. A., Wouters, E. F. �., & Spruit, M. A. (2015) · Current Opinion in Supportive and Palliative Care · doi:10.1097/spc.0000000000000146 · Cited by 61 · see citing works
Baillie, J., Anagnostou, D., Sivell, S., Godwin, J. V., Byrne, A., & Nelson, A. (2018) · BMC Palliative Care · doi:10.1186/s12904-018-0314-4 · Cited by 60 · see citing works
Ambrosino, N., & Fracchia, C. (2019) · Pulmonology · doi:10.1016/j.pulmoe.2019.04.002 · Cited by 60 · see citing works
Dzingina, M. D., Reilly, C. C., Bausewein, C., Jolley, C. J., Moxham, J., McCrone, P., Higginson, I. J., & Yi, D. (2017) · Palliative Medicine · doi:10.1177/0269216317690994 · Cited by 56 · see citing works
Self-citationPalliative care for chronic illness: driving change
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Finucane, A., Bone, A. E., Evans, C., Gomes, B., Meade, R., Higginson, I. J., & Murray, S. A. (2019) · BMC Palliative Care · doi:10.1186/s12904-019-0490-x · Cited by 56 · see citing works
Self-citationPalliative Care in Advanced Lung Disease
Rocker, G. M., Simpson, A., & Horton, R. (2015) · CHEST Journal · doi:10.1378/chest.14-2593 · Cited by 55 · see citing works
Managing breathlessness: a palliative care approach
Chin, C. A., & Booth, S. (2016) · Postgraduate Medical Journal · doi:10.1136/postgradmedj-2015-133578 · Cited by 56 · see citing works
Self-citationon behalf of the GUIDE_Care project, Higginson, I. J., Reilly, C. C., Bajwah, S., Maddocks, M. M., Costantini, M., & Gao, W. (2017) · BMC Medicine · doi:10.1186/s12916-016-0776-2 · Cited by 55 · see citing works
Self-citationMackintosh, J. A., Keir, G. J., Troy, L. K., Holland, A. E., Grainge, C., Chambers, D. C., Sandford, D., Jo, H. E., Glaspole, I., WILSHER, M. L., et al. (2024) · Respirology · doi:10.1111/resp.14656 · Cited by 54 · see citing works
Palliative and end of life care in solid organ transplantation
Wentlandt, K., Weiss, A. J., O’Connor, E., & Kaya, E. (2017) · American Journal of Transplantation · doi:10.1111/ajt.14522 · Cited by 54 · see citing works
The TEAM Approach to Improving Oncology Outcomes by Incorporating Palliative Care in Practice
Bakitas, M. A., El-Jawahri, A. R., Farquhar, M. C., FERRELL, B. R., Grudzen, C. R., Higginson, I. J., Temel, J. S., Zimmermann, C., & Smith, T. J. (2017) · Journal of Oncology Practice · doi:10.1200/jop.2017.022939 · Cited by 53 · see citing works
Self-citationThe need for a holistic approach for SSc-ILD – achievements and ambiguity in a devastating disease
Hoffmann‐Vold, A., Allanore, Y., Bendstrup, E. M., Bruni, C., Distler, O., Maher, T. M., Wijsenbeek, M. S., & Kreuter, M. (2020) · Respiratory Research · doi:10.1186/s12931-020-01459-0 · Cited by 55 · see citing works
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Self-citationProactive palliative care for patients with COPD (PROLONG): a pragmatic cluster controlled trial
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Nonpharmacological management of psychological distress in people with COPD
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Transition Points for the Routine Integration of Palliative Care in Patients With Advanced Cancer
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Palliative Care: Time for Action
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- Authors
- Higginson, I. J., Bausewein, C., Reilly, C. C., Gao, W., Gysels, M., Dzingina, M., McCrone, P., Booth, S., Jolley, C. J., & Moxham, J.
- Affiliations
- King's College London (GB)
- Cambridge University Hospitals NHS Foundation Trust (GB)
- ORCID
- Venue
- The Lancet Respiratory Medicine
- Publisher
- Elsevier BV
- Published
- 2014-12
- Volume
- 2
- Issue
- 12
- Pages
- 979-987
- ISSN
- 2213-2600 (ISSN-L)
- OpenAlex
- W2098206882
- Cited by
- 605
- References
- 44
- Citations by year
- 2026: 23 · 2025: 36 · 2024: 36 · 2023: 47 · 2022: 46 · 2021: 68 · 2020: 51 · 2019: 68 · 2018: 64 · 2017: 69 · 2016: 57 · 2015: 39 · 2014: 1
- FWCI
- 54.89
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Locations
- The Lancet Respiratory Medicine (publishedVersion, cc-by)
- PubMed (publishedVersion)
- UvA-DARE (University of Amsterdam) (publishedVersion, other-oa)
- UvA-DARE (University of Amsterdam) (submittedVersion, other-oa)
- Research Portal (King's College London) (submittedVersion, cc-by)
- Data Archiving and Networked Services (DANS) (submittedVersion, other-oa)
- Funders
- Research for Patient Benefit (PBPG-0808-17311)
- NIHR under its Research for Patient Benefit (RfPB) programme (PB-PG-0808-17311)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Chronic Obstructive Pulmonary Disease (COPD) Research
- Keywords
- refractory breathlessness, palliative care, advanced disease, chronic obstructive pulmonary disease, interstitial lung disease, survival, quality of life, physiotherapy, occupational therapy, early integration of palliative care, symptom management, usual care comparison, informal caregivers, ethnicity, Chronic Respiratory Questionnaire
- MeSH terms
- Adult, Chronic Disease, Dyspnea, Heart Failure, Humans, Palliative Care, Quality of Life, Respiratory Therapy, Single-Blind Method, Motor Neuron Disease, Treatment Outcome, Lung Diseases, Interstitial, Pulmonary Disease, Chronic Obstructive
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