Psychosocial consequences of living with breathlessness due to advanced disease

Current Opinion in Supportive and Palliative Care

Volumn 9, Issue 3, 2015, Pages 232-237

  Janssen, Daisy J A ^a,b   Wouters, Emiel F M ^a,b   Spruit, Martijn A ^a,c  

^a Ciro   (Netherlands)

^b MAASTRICHT UNIVERSITY MEDICAL CENTER   (Netherlands)

^c HASSELT UNIVERSITY   (Belgium)

Author keywords

Anxiety; Breathlessness; Dyspnoea; Family Caregivers; Palliative care

Indexed keywords

ADAPTIVE BEHAVIOR; CAREGIVER; CHRONIC DISEASE; DYSPNEA; FAMILY RELATION; HUMAN; HUMAN RELATION; MENTAL STRESS; PALLIATIVE THERAPY; PSYCHOLOGY;

ADAPTATION, PSYCHOLOGICAL; CAREGIVERS; CHRONIC DISEASE; DYSPNEA; FAMILY RELATIONS; HUMANS; INTERPERSONAL RELATIONS; PALLIATIVE CARE; STRESS, PSYCHOLOGICAL;

EID: 84942847054     PISSN: 17514258     EISSN: 17514266     Source Type: Journal    
DOI: 10.1097/SPC.0000000000000146     Document Type: Review

References (39)

1. Parshall MB, Schwartzstein RM, Adams L, et al. An official American Thoracic Society statement: update on the mechanisms, assessment, and management of dyspnea. Am J Respir Crit Care Med 2012; 185:435-452.
2. Mahler DA, O'Donnell DE. Recent advances in dyspnea. Chest 2015; 147:232-241.
3. Janssen DJ, Spruit MA, Wouters EF, Schols JM. Daily symptom burdenin end-stage chronic organ failure: a systematic review. Palliat Med 2008; 22:938-948.
4. Edmonds P, Karlsen S, Khan S, Addington-Hall J. A comparison of the palliative care needs of patients dying from chronic respiratory diseases and lung cancer. Palliat Med 2001; 15:287-295.
5. Lee AS, Mira-Avendano I, Ryu JH, Daniels CE. The burden of idiopathic pulmonary fibrosis: an unmet public health need. Respir Med 2014; 108: 955-967.
6. Janssen DJ, Spruit MA, Uszko-Lencer NH, et al. Symptoms, comorbidities, and healthcare in advanced chronic obstructive pulmonary disease or chronic heart failure. J Palliat Med 2011; 14:735-743.
7. Cui J, Fang F, Shen F, et al. Quality of life in patients with advanced cancer at the end of life as measured by the McGill quality of life questionnaire: a survey in China. J Pain Symptom Manage 2014; 48:893-902.
8. Currow DC, Smith J, Davidson PM, et al. Do the trajectories of dyspnea differ in prevalence and intensity by diagnosis at the end of life? A consecutive cohort study. J Pain Symptom Manage 2010; 39:680-690.
9. Weingaertner V, Scheve C, Gerdes V, et al. Breathlessness, functional status, distress, and palliative care needs over time in patients with advanced chronic obstructive pulmonary disease or lung cancer: a cohort study. J Pain Symptom Manage 2014; 48:569-581.
10. Curtis JR, Deyo RA, Hudson LD. Pulmonary rehabilitation in chronic respiratory insufficiency. 7. Health-related quality of life among patients with chronic obstructive pulmonary disease. Thorax 1994; 49:162-170.
11. Dunger C, Higginson IJ, Gysels M, et al. Breathlessness and crises in the context of advanced illness: a comparison between COPD and lung cancer patients. Palliat Support Care 2015; 13:229-237.
12. Gysels MH, Higginson IJ. The lived experience of breathlessness and its implications for care: a qualitative comparison in cancer, COPD, heart failure and MND. BMC Palliat Care 2011; 10:15.
13. Janssen DJ, Franssen FM, Wouters EF, et al. Impaired health status and care dependency in patients with advanced COPD or chronic heart failure. Qual Life Res 2011; 20:1679-1688.
14. Vaes AW, Wouters EF, Franssen FM, et al. Task-related oxygen uptake during domestic activities of daily life in patients with COPD and healthy elderly subjects. Chest 2011; 140:970-979.
15. Swigris JJ, Stewart AL, Gould MK, Wilson SR. Patients' perspectives on how idiopathic pulmonary fibrosis affects the quality of their lives. Health Qual Life Outcomes 2005; 3:61.
16. Disler RT, Green A, Luckett T, et al. Experience of advanced chronic obstructive pulmonary disease: metasynthesis of qualitative research. J Pain Symptom Manage 2014; 48:1182-1199.
17. Delgado-Guay MO, Kim YJ, Shin SH, et al. Avoidable and Unavoidable Visits to the Emergency Department Among Patients With Advanced Cancer Receiving Outpatient Palliative Care. J Pain Symptom Manage 2015; 49: 497-504.
18. Burge F, Lawson B, Johnston G, et al. Bereaved family member perceptions of patient-focused family-centred care during the last 30 days of life using a mortality follow-back survey: does location matter? BMC Palliat Care 2014; 13:25.
19. Frei A, Muggensturm P, Putcha N, et al. Five comorbidities reflected the health status in patients with chronic obstructive pulmonary disease: the newly developed COMCOLD index. J Clin Epidemiol 2014; 67:904-911.
20. Divo M, Cote C, de Torres JP, et al. Comorbidities and risk of mortality in patients with chronic obstructive pulmonary disease. Am J Respir Crit Care Med 2012; 186:155-161.
21. Ryan R, Spathis A, Clow A, et al. The biological impact of living with chronic breathlessness- A role for the hypothalamic-pituitary-adrenal axis? Med Hypotheses 2014; 83:232-237.
22. Borge CR, Wahl AK, Moum T. Association of breathlessness with multiple symptoms in chronic obstructive pulmonary disease. J Adv Nurs 2010; 66:2688-2700.
23. Cooper CB. The connection between chronic obstructive pulmonary disease symptoms and hyperinflation and its impact on exercise and function. Am J Med 2006; 119:21-31.
24. Schroedl CJ, Yount SE, Szmuilowicz E, et al. A qualitative study of unmet healthcare needs in chronic obstructive pulmonary disease. A potential role for specialist palliative care? Ann Am Thorac Soc 2014; 11:1433-1438.
25. Simon ST, Weingartner V, Higginson IJ, et al. Definition, categorization, and terminology of episodic breathlessness: consensus by an international Delphi survey. J Pain Symptom Manage 2014; 47:828-838.
26. Weingartner V, Scheve C, Gerdes V, et al. Characteristics of episodic breathlessness as reported by patients with advanced chronic obstructive pulmonary disease and lung cancer: Results of a descriptive cohort study. Palliat Med 2015; 29:420-428.
27. Gysels M, Higginson IJ. Access to services for patients with chronic obstructive pulmonary disease: the invisibility of breathlessness. J Pain Symptom Manage 2008; 36:451-460.
28. Renom-Guiteras A, Planas J, Farriols C, et al. Insomnia among patients with advanced disease during admission in a Palliative Care Unit: a prospective observational study on its frequency and association with psychological, physical and environmental factors. BMC Palliat Care 2014; 13:40.
29. Teixeira PJ, Porto L, Kristensen CH, et al. Posttraumatic stress symptoms and exacerbations in COPD patients. COPD 2015; 12:90-95.
30. Gysels MH, Higginson IJ. Caring for a person in advanced illness and suffering from breathlessness at home: threats and resources. Palliat Support Care 2009; 7:153-162.
31. Janssen DJ, Wouters EF, Schols JM, Spruit MA. Care dependency independently predicts two-year survival in outpatients with advanced chronic organ failure. J Am Med Dir Assoc 2013; 14:194-198.
32. Incalzi RA, Corsonello A, Pedone C, et al. Construct validity of activities of daily living scale: a clue to distinguish the disabling effects of COPD and congestive heart failure. Chest 2005; 127:830-838.
33. Janssen DJ, Spruit MA, Wouters EF, Schols JM. Family caregiving in advanced chronic organ failure. J Am Med Dir Assoc 2012; 15:447-456.
34. Sautter JM, Tulsky JA, Johnson KS, et al. Caregiver experience during advanced chronic illness and last year of life. J Am Geriatr Soc 2014; 62:1082-1090.
35. Pinto RA, Holanda MA, Medeiros MM, et al. Assessment of the burden of caregiving for patients with chronic obstructive pulmonary disease. Respir Med 2007; 101:2402-2408.
36. Jacome C, Figueiredo D, Gabriel R, et al. Predicting anxiety and depression among family carers of people with Chronic Obstructive Pulmonary Disease. Int Psychogeriatr 2014; 26:1191-1199.
37. Ek K, Andershed B, Sahlberg-Blom E, Ternestedt BM. The unpredictable death'-The last year of life for patients with advanced COPD: relatives' stories. Palliat Support Care 2014; doi: 10.1017/S1478951514001151. [Epub ahead of print]
38. Higginson IJ, Bausewein C, Reilly CC, et al. An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial. Lancet Respir Med 2014; 2:979-987.
39. Farquhar MC, Prevost AT, McCrone P, et al. Is a specialist breathlessness service more effective and cost-effective for patients with advanced cancer and their carers than standard care? Findings of a mixed-method randomised controlled trial. BMC Med 2014; 12:194.