A Qualitative Study of Unmet Healthcare Needs in Chronic Obstructive Pulmonary Disease. A Potential Role for Specialist Palliative Care?

Overview

Journal Ann Am Thorac Soc

Specialty Pulmonary Medicine

Date 2014 Oct 11

PMID 25302521

Citations 33

Authors

Clara J Schroedl

Susan E Yount

Eytan Szmuilowicz

Paul J Hutchison

Sharon R Rosenberg

Ravi Kalhan

Affiliations

Soon will be listed here.

Abstract

Rationale: Patients with chronic obstructive pulmonary disease (COPD) have high symptom burdens and poor health-related quality of life. The American Thoracic Society issued a consensus statement outlining the need for palliative care for patients with chronic respiratory diseases. A better understanding of the unmet healthcare needs among patients with COPD may help determine which aspects of palliative care are most beneficial.

Objectives: To identify the unmet healthcare needs of patients with COPD hospitalized for exacerbation using qualitative methods.

Methods: We conducted 20 semistructured interviews of patients admitted for acute exacerbations of COPD focused on patient understanding of diagnosis and prognosis, effect of COPD on daily life and social relationships, symptoms, healthcare needs, and preparation for the end of life. Transcribed interviews were evaluated using thematic analysis.

Measurements And Main Results: Six themes were identified. (1) Understanding of disease: Most participants correctly identified their diagnosis and recognized their symptoms worsening over time. Only half understood their disease severity and prognosis. (2) SYMPTOMS: Breathlessness was universal and severe. (3) Physical limitations: COPD prevented participation in activities. (4) Emotional distress: Depressive symptoms and/or anxiety were present in most participants. (5) Social isolation: Most participants identified social limitations and felt confined to their homes. (6) Concerns about the future: Half of participants expressed fear about their future.

Conclusions: There are many unmet healthcare needs among patients hospitalized for COPD exacerbation. Relief of symptoms, physical limitations, emotional distress, social isolation, and concerns about the future may be better managed by integrating specialist palliative care into our current care model.

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References

Seamark D, Blake S, Seamark C, Halpin D . Living with severe chronic obstructive pulmonary disease (COPD): perceptions of patients and their carers. An interpretative phenomenological analysis. Palliat Med. 2004; 18(7):619-25. DOI: 10.1191/0269216304pm928oa. View

Heffner J . Advance care planning in chronic obstructive pulmonary disease: barriers and opportunities. Curr Opin Pulm Med. 2011; 17(2):103-9. DOI: 10.1097/mcp.0b013e328341ce80. View

Elkington H, White P, Addington-Hall J, Higgs R, Pettinari C . The last year of life of COPD: a qualitative study of symptoms and services. Respir Med. 2004; 98(5):439-45. DOI: 10.1016/j.rmed.2003.11.006. View

Janssen D, Spruit M, Schols J, Wouters E . A call for high-quality advance care planning in outpatients with severe COPD or chronic heart failure. Chest. 2010; 139(5):1081-1088. DOI: 10.1378/chest.10-1753. View

Gysels M, Higginson I . The experience of breathlessness: the social course of chronic obstructive pulmonary disease. J Pain Symptom Manage. 2010; 39(3):555-63. DOI: 10.1016/j.jpainsymman.2009.08.009. View

Gaspar C, Alfarroba S, Telo L, Gomes C, Barbara C . End-of-life care in COPD: a survey carried out with Portuguese pulmonologists. Rev Port Pneumol. 2014; 20(3):123-30. DOI: 10.1016/j.rppneu.2014.01.008. View

Elkington H, White P, Addington-Hall J, Higgs R, Edmonds P . The healthcare needs of chronic obstructive pulmonary disease patients in the last year of life. Palliat Med. 2005; 19(6):485-91. DOI: 10.1191/0269216305pm1056oa. View

Habraken J, Ter Riet G, Gore J, Greenstone M, Weersink E, Bindels P . Health-related quality of life in end-stage COPD and lung cancer patients. J Pain Symptom Manage. 2009; 37(6):973-81. DOI: 10.1016/j.jpainsymman.2008.07.010. View

Gore J, Brophy C, Greenstone M . How well do we care for patients with end stage chronic obstructive pulmonary disease (COPD)? A comparison of palliative care and quality of life in COPD and lung cancer. Thorax. 2000; 55(12):1000-6. PMC: 1745647. DOI: 10.1136/thorax.55.12.1000. View

10.

Gardiner C, Gott M, Small N, Payne S, Seamark D, Barnes S . Living with advanced chronic obstructive pulmonary disease: patients concerns regarding death and dying. Palliat Med. 2009; 23(8):691-7. DOI: 10.1177/0269216309107003. View

11.

Maurer J, Rebbapragada V, Borson S, Goldstein R, Kunik M, Yohannes A . Anxiety and depression in COPD: current understanding, unanswered questions, and research needs. Chest. 2008; 134(4 Suppl):43S-56S. PMC: 2849676. DOI: 10.1378/chest.08-0342. View

12.

Qaseem A, Snow V, Casey Jr D, Cross Jr J, Owens D, Dallas P . Evidence-based interventions to improve the palliative care of pain, dyspnea, and depression at the end of life: a clinical practice guideline from the American College of Physicians. Ann Intern Med. 2008; 148(2):141-6. DOI: 10.7326/0003-4819-148-2-200801150-00009. View

13.

Solano J, Gomes B, Higginson I . A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. J Pain Symptom Manage. 2006; 31(1):58-69. DOI: 10.1016/j.jpainsymman.2005.06.007. View

14.

Rocker G, Dodek P, Heyland D . Toward optimal end-of-life care for patients with advanced chronic obstructive pulmonary disease: insights from a multicentre study. Can Respir J. 2008; 15(5):249-54. PMC: 2679546. DOI: 10.1155/2008/369162. View

15.

Parshall M, Schwartzstein R, Adams L, Banzett R, Manning H, Bourbeau J . An official American Thoracic Society statement: update on the mechanisms, assessment, and management of dyspnea. Am J Respir Crit Care Med. 2012; 185(4):435-52. PMC: 5448624. DOI: 10.1164/rccm.201111-2042ST. View

16.

Janssen D, Spruit M, Uszko-Lencer N, Schols J, Wouters E . Symptoms, comorbidities, and health care in advanced chronic obstructive pulmonary disease or chronic heart failure. J Palliat Med. 2011; 14(6):735-43. DOI: 10.1089/jpm.2010.0479. View

17.

Lange P, Marott J, Vestbo J, Olsen K, Ingebrigtsen T, Dahl M . Prediction of the clinical course of chronic obstructive pulmonary disease, using the new GOLD classification: a study of the general population. Am J Respir Crit Care Med. 2012; 186(10):975-81. DOI: 10.1164/rccm.201207-1299OC. View

18.

Lanken P, Terry P, DeLisser H, Fahy B, Hansen-Flaschen J, Heffner J . An official American Thoracic Society clinical policy statement: palliative care for patients with respiratory diseases and critical illnesses. Am J Respir Crit Care Med. 2008; 177(8):912-27. DOI: 10.1164/rccm.200605-587ST. View

19.

Gysels M, Bausewein C, Higginson I . Experiences of breathlessness: a systematic review of the qualitative literature. Palliat Support Care. 2007; 5(3):281-302. DOI: 10.1017/s1478951507000454. View

20.

Knauft E, Nielsen E, Engelberg R, Patrick D, Curtis J . Barriers and facilitators to end-of-life care communication for patients with COPD. Chest. 2005; 127(6):2188-96. DOI: 10.1378/chest.127.6.2188. View