Living with pulmonary hypertension: Unique insights from an international ethnographic study

BMJ Open

Volumn 4, Issue 5, 2014, Pages

  Kingman, Martha ^a   Hinzmann, Barbara ^b   Sweet, Oliver ^c   Vachiéry, Jean Luc ^d  

^a UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER   (United States)

^b BAYER PHARMA AG   (Germany)

^c Ipsos   (United States)

^d ERASME HOSPITAL   (Belgium)

Author keywords

[No Author keywords available]

Indexed keywords

AGED; ARTICLE; ATTITUDE TO ILLNESS; CHRONIC THROMBOEMBOLIC PULMONARY HYPERTENSION; CLINICAL ARTICLE; COPING BEHAVIOR; DAILY LIFE ACTIVITY; DEPRESSION; DISEASE COURSE; ETHNOGRAPHIC RESEARCH; FEMALE; HEALTH CARE ACCESS; HEALTH CARE PERSONNEL; HUMAN; LIFESTYLE; MALE; PATIENT ASSESSMENT; PATIENT COMPLIANCE; PERCEPTION; PERSONALITY; PROGNOSIS; PULMONARY HYPERTENSION; QUALITATIVE ANALYSIS; QUALITY OF LIFE; SELF CONCEPT; SOCIAL ISOLATION; SOCIAL LIFE; SYMPTOM; ADULT; COMPLICATION; CULTURAL ANTHROPOLOGY; HYPERTENSION, PULMONARY; INTERNATIONAL COOPERATION; LUNG EMBOLISM; MIDDLE AGED; QUALITATIVE RESEARCH; VERY ELDERLY; YOUNG ADULT;

ADULT; AGED; AGED, 80 AND OVER; ANTHROPOLOGY, CULTURAL; FEMALE; HUMANS; HYPERTENSION, PULMONARY; INTERNATIONALITY; MALE; MIDDLE AGED; PULMONARY EMBOLISM; QUALITATIVE RESEARCH; QUALITY OF LIFE; YOUNG ADULT;

EID: 84901061001     PISSN: None     EISSN: 20446055     Source Type: Journal    
DOI: 10.1136/bmjopen-2013-004735     Document Type: Article

References (24)

1. Galiè N, Hoeper MM, Humbert M, et al. Guidelines for the diagnosis and treatment of pulmonary hypertension: the task force for the diagnosis and treatment of pulmonary hypertension of the European Society of Cardiology (ESC) and the European Respiratory Society (ERS), endorsed by the International Society of Heart and Lung Transplantation (ISHLT). Eur Heart J 2009;30:2493-537.
2. Benza RL, Miller DP, Barst RJ, et al. An evaluation of long-term survival from time of diagnosis in pulmonary arterial hypertension from REVEAL. Chest 2012;142:448-56.
3. Condliffe R, Kiely DG, Gibbs JS, et al. Improved outcomes in medically and surgically treated chronic thromboembolic pulmonary hypertension. Am J Respir Crit Care Med 2008;177:1122-7. (Pubitemid 351717571)
4. Mayer E, Jenkins D, Lindner J, et al. Surgical management and outcome of patients with chronic thromboembolic pulmonary hypertension: results from an international prospective registry. J Thorac Cardiovasc Surg 2011;141:702-10.
5. Pepke-Zaba J, Delcroix M, Lang I, et al. Chronic thromboembolic pulmonary hypertension (CTEPH): results from an International Prospective Registry. Circulation 2011;124:1973-81.
6. Gihl AF. Health-related quality of life in pulmonary arterial hypertension. Adv Pulm Hypertens 2010;8:215-22.
7. Rubenfire M, Lippo G, Bodini BD, et al. Evaluating health-related quality of life, work ability, and disability in pulmonary arterial hypertension: an unmet need. Chest 2009;136:597-603.
8. NHS Oldham UK. Oldham Public Health Report. 2008.
9. Savage J. Ethnography and health care. BMJ 2000;321:1400-2.
10. Lowe B, Grafe K, Ufer C, et al. Anxiety and depression in patients with pulmonary hypertension. Psychosom Med 2004;66:831-6. (Pubitemid 39552865)
11. Studer SM, Migliore C. Quality of life in pulmonary arterial hypertension: qualitative insights from patients and caregivers. Adv Pulm Hypertens 2012;10:222-6.
12. Wryobeck JM, Lippo G, McLaughlin V, et al. Psychosocial aspects of pulmonary hypertension: a review. Psychosomatics 2007;48: 467-75. (Pubitemid 350074398)
13. Aldrighetti R, Howard L, Armstrong I, et al. The impact of pulmonary arterial hypertension (PAH) on the lives of patients and carers: results from an international survey. http://www.phaeurope.org/projects-activities/pah-patient- and-carer-survey/2012.
14. McDonagh TA, Cunningham AD, Morrison CE, et al. Left ventricular dysfunction, natriuretic peptides, and mortality in an urban population. Heart 2001;86:21-6. (Pubitemid 32977774)
15. McDonough A, Matura LA, Carroll DL. Symptom experience of pulmonary arterial hypertension patients. Clin Nurs Res 2011;20:120-34.
16. Flattery MP, Pinson JM, Savage L, et al. Living with pulmonary artery hypertension: patients' experiences. Heart Lung 2005;34:99-107. (Pubitemid 40343085)
17. Swetz KM, Shanafelt TD, Drozdowicz LB, et al. Symptom burden, quality of life, and attitudes toward palliative care in patients with pulmonary arterial hypertension: results from a cross-sectional patient survey. J Heart Lung Transplant 2012;31:1102-8.
18. Armstrong I, Rochnia N, Harries C, et al. The trajectory to diagnosis with pulmonary arterial hypertension: a qualitative study. BMJ Open 2012;2:1-9.
19. Barst RJ, Rubin LJ, Long WA, et al. A comparison of continuous intravenous epoprostenol (prostacyclin) with conventional therapy for primary pulmonary hypertension. The Primary Pulmonary Hypertension Study Group. N Engl J Med 1996;334:296-302.
20. Keogh AM, McNeil KD, Wlodarczyk J, et al. Quality of life in pulmonary arterial hypertension: improvement and maintenance with bosentan. J Heart Lung Transplant 2007;26:181-7. (Pubitemid 46136035)
21. Olschewski H, Simonneau G, Galiè N, et al. Inhaled iloprost for severe pulmonary hypertension. N Engl J Med 2002;347:322-9. (Pubitemid 34815354)
22. Wilkins MR, Paul GA, Strange JW, et al. Sildenafil versus endothelin receptor antagonist for pulmonary hypertension (SERAPH) study. Am J Respir Crit Care Med 2005;171:1292-7. (Pubitemid 40740738)
23. Vachièry JL, Yerly P, Huez S. How to detect disease progression in pulmonary arterial hypertension. Eur Respir Rev 2012;21:40-7.
24. Hoeper MM, Huscher D, Ghofrani HA, et al. Elderly patients diagnosed with idiopathic pulmonary arterial hypertension: results from the COMPERA registry. Int J Cardiol 2012;168:871-80.