Symptom distress in advanced chronic organ failure: Disagreement among patients and family caregivers

Journal of Palliative Medicine

Volumn 15, Issue 4, 2012, Pages 447-456

  Janssen, Daisy J A ^a,b,c   Spruit, Martijn A ^a   Wouters, Emiel F M ^a,d   Schols, Jos M G A ^e  

^a CIRO+   (Netherlands)

^b MAASTRICHT UNIVERSITY   (Netherlands)

^c Proteion Thuis ^*  (Netherlands)

^d MAASTRICHT UNIVERSITY MEDICAL CENTER   (Netherlands)

^e MAASTRICHT UNIVERSITY   (Netherlands)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; AGED; ANOREXIA; ANXIETY; ARTICLE; CAREGIVER; CHRONIC KIDNEY FAILURE; CHRONIC OBSTRUCTIVE LUNG DISEASE; COUGHING; CROSS-SECTIONAL STUDY; DISEASE SEVERITY; DIZZINESS; DYSPNEA; EDEMA; FAMILY; FAMILY ATTITUDE; FATIGUE; FEMALE; HEART FAILURE; HUMAN; INSOMNIA; LONGITUDINAL STUDY; MAJOR CLINICAL STUDY; MALE; MOOD CHANGE; MOUTH DISEASE; MUSCLE CRAMP; MUSCLE WEAKNESS; OUTPATIENT; PAIN; PANIC; PATIENT ATTITUDE; PATIENT SATISFACTION; PRURITUS; RESTLESS LEGS SYNDROME; SYMPTOM; SYMPTOM DISTRESS; THIRST; THORAX PAIN; VISUAL ANALOG SCALE;

ADAPTATION, PSYCHOLOGICAL; AGED; CAREGIVERS; CHRONIC DISEASE; CONFIDENCE INTERVALS; CROSS-SECTIONAL STUDIES; DISEASE PROGRESSION; FEMALE; HEALTH STATUS INDICATORS; HUMANS; MALE; MIDDLE AGED; MULTIPLE ORGAN FAILURE; PAIN MEASUREMENT; PSYCHOMETRICS; SEVERITY OF ILLNESS INDEX; STATISTICS, NONPARAMETRIC; STRESS, PSYCHOLOGICAL;

EID: 84859797488     PISSN: 10966218     EISSN: 15577740     Source Type: Journal    
DOI: 10.1089/jpm.2011.0394     Document Type: Article

References (36)

1. Janssen DJ, Spruit MA, Wouters EF, Schols JM: Daily symptom burden in end-stage chronic organ failure: A systematic review. Palliat Med 2008;22:938-948.
2. Murtagh FE, Addington-Hall J, Higginson IJ: The prevalence of symptoms in end-stage renal disease: A systematic review. Adv Chronic Kidney Dis 2007;14:82-99. (Pubitemid 46014531)
3. Janssen DJ, Spruit MA, Uszko-Lencer NH, Schols JM, Wouters EF: Symptoms, comorbidities, and health care in adVanced chronic obstructive pulmonary disease or chronic heart failure. J Palliat Med 2011;14:735-743.
4. Lanken PN, Terry PB, Delisser HM, Fahy BF, Hansen- Flaschen J, Heffner JE, Levy M, Mularski RA, Osborne ML, Prendergast TJ, Rocker G, Sibbald WJ, Wilfond B, Yankaskas JR: 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;177:912-927. (Pubitemid 351600670)
5. Jaarsma T, Beattie JM, Ryder M, Rutten FH, T. McDonagh, P. Mohacsi, S.A. Murray, T. Grodzicki, I. Bergh, M. Metra, Ekman I, Angermann C, ALeventhal AM, Pitsis A, Anker SD, Gavazzi A, Ponikowski P, Dickstein K, Delacretaz E, Blue L, Strasser F, McMurray J: Palliative care in heart failure: A position statement from the palliative care workshop of the Heart Failure Association of the European Society of Cardiology. Eur J Heart Fail 2009;11:433-443.
6. Weisbord SD, Carmody SS, Bruns FJ, Rotondi AJ, Cohen LM, Zeidel ML, Arnold RM: Symptom burden, quality of life, adVance care planning and the potential value of palliative care in severely ill haemodialysis patients. Nephrol Dial Transplant 2003;18:1345-1352. (Pubitemid 36826956)
7. 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;98:439-445. (Pubitemid 38578726)
8. Cohen LM, Germain MG, Woods AL, Mirot A, and Burleson JA: The family perspective of ESRD deaths. Am J Kidney Dis 2005;45:154-161. (Pubitemid 40038056)
9. Claessens MT, Lynn J, Zhong Z, Desbiens NA, Phillips RS, Wu AW, Harrell Jr. FE, Connors Jr AF: Dying with lung cancer or chronic obstructive pulmonary disease: Insights from SUPPORT. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. J Am Geriatr Soc 2000;48:S146-S153. (Pubitemid 30266007)
10. Coventry P., Grande GE, Richards DA, Todd CJ: Prediction of appropriate timing of palliative care for older adults with non-malignant life-threatening disease: A systematic review. Age Ageing 2005;34:218-227. (Pubitemid 40711733)
11. Murtagh FE, Murphy E, Sheerin NS: Illness trajectories: An important concept in the management of kidney failure. Nephrol Dial Transplant 2008;23:3746-3748.
12. Formiga F, Olmedo C, Lopez-Soto A, Navarro M, Culla A, Pujol R: Dying in hospital of terminal heart failure or severe dementia: The circumstances associated with death and the opinions of caregivers. Palliat Med 2007;21:35-40. (Pubitemid 47161280)
13. Levenson JW, McCarthy EP, Lynn J, Davis RB, Phillips RS: The last six months of life for patients with congestive heart failure. J Am Geriatr Soc 2000;48:S101-S109. (Pubitemid 30266002)
14. Lynn J, Teno JM, Phillips RS, Wu AW, Desbiens N, Harrold J, Claessens MT, Wenger N, Kreling B, and Connors Jr AF: Perceptions by family members of the dying experience of older and seriously ill patients. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. Ann Intern Med 1997; 126:97-106.
15. 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. (Pubitemid 32640547)
16. 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: 485-491. (Pubitemid 41430822)
17. McCarthy M, Lay M, Addington-Hall J: Dying from heart disease. J R Coll Physicians Lond 1996;30:325-328. (Pubitemid 126499823)
18. SulliVan MD O'Meara ES: Heart failure at the end of life: symptoms, function, and medical care in the Cardiovascular Health Study. Am J Geriatr Cardiol 2006;15:217-225.
19. Cohen LM, Germain M, Poppel DM, Woods A, Kjellstrand CM: Dialysis discontinuation and palliative care. Am J Kidney Dis 2000;36:140-144. (Pubitemid 30432575)
20. Higginson I, Wade A, McCarthy M: Palliative care: Views of patients and their families. BMJ 1990;301:277-281. (Pubitemid 20241231)
21. Higginson I, Priest P, McCarthy M: Are bereaved family members a valid proxy for a patient's assessment of dying? Soc Sci Med 1994;38:553-557. (Pubitemid 24038051)
22. Kutner JS, Bryant LL, Beaty BL, Fairclough DL: Symptom distress and quality-of-life assessment at the end of life: The role of proxy response. J Pain Symptom Manage 2006;32: 300-310. (Pubitemid 44430133)
23. Janssen DJ, Wouters EF, Schols JM, Spruit MA: Selfperceived symptoms and care needs of patients with severe to very severe chronic obstructive pulmonary disease, congestive heart failure or chronic renal failure and its consequences for their closest relatives: The research protocol. BMC Palliat Care 2008;7:5.
24. Janssen DJ, Spruit MA, Wouters EF, Schols JM: Family caregiving in adVanced chronic organ failure. J Am Med Dir Assoc 2011. Published online ahead of print. DOI: 10.1016/ j.jamda.2011.04.017
25. Janssen DJ, Spruit MA, Schols JM, and Wouters EF: A call for high-quality adVance care planning in outpatients with severe COPD or chronic heart failure. Chest 2011;139:1081-1088.
26. Janssen DJ, Franssen FM, Wouters EF, Schols JM, Spruit MA: Impaired health status and care dependency in patients with adVanced COPD or chronic heart failure. Qual Life Res 2011;20:1679-1688.
27. Janssen DJ, Spruit MA, Schols JM, Cox B, Nawrot TS, Curtis JR, Wouters EF: Predicting changes in preferences for lifesustaining treatment among patients with adVanced chronic organ failure. Chest 2011 [Epub ahead of print] DOI: 10. 1378/chest.11-1472.
28. Steinhauser KE, Clipp EC, Hays JC, Olsen M, Arnold R, Christakis NA, Lindquist JH, Tulsky JA: Identifying, recruiting, and retaining seriously-ill patients and their caregivers in longitudinal research. Palliat Med 2006;20:745-754. (Pubitemid 46040126)
29. Charlson ME, Pompei P, Ales KL, MacKenzie CR: A new method of classifying prognostic comorbidity in longitudinal studies: Development and validation. J Chronic Dis 1987;40:373-383. (Pubitemid 17055592)
30. Martin-Pfitzenmeyer I, Gauthier S, Bailly M, Loi N, Popitean L, d'Athis P, Bouvier AM, Pfitzenmeyer P: Prognostic factors in stage D heart failure in the very elderly. Gerontology 2009;55:719-726.
31. American Thoracic Society. Standardization of spirometry, 1994 Update. Am J Respir Crit Care Med 1995;152:1107-1136.
32. Jensen MP, Karoly P, Braver S: The measurement of clinical pain intensity: A comparison of six methods. Pain 1986;27: 117-126. (Pubitemid 16003213)
33. Collins SL, Moore RA, McQuay HJ: The visual analogue pain intensity scale: What is moderate pain in millimetres? Pain 1997;72:95-97. (Pubitemid 27321906)
34. Bland JM Altman DG: Statistical methods for assessing agreement between two methods of clinical measurement. Lancet 1986;1:307-310. (Pubitemid 16134762)
35. Ries AL: Minimally clinically important difference for the UCSD Shortness of Breath Questionnaire, Borg Scale, and Visual Analog Scale. COPD 2005;2:105-110. (Pubitemid 40776230)
36. Viera AJ, Garrett JM: Understanding interobserver agreement: The kappa statistic. Fam Med 2005;37:360-363. (Pubitemid 40656185)