EmPHasis-10: Development of a health-related quality of life measure in pulmonary hypertension

European Respiratory Journal

Volumn 43, Issue 4, 2014, Pages 1106-1113

  Yorke, Janelle ^a   Corris, Paul ^b   Gaine, Sean ^c   Gibbs, J Simon R ^d,e   Kiely, David G ^f   Harries, Carl ^g   Pollock, Val ^h   Armstrong, Iain ^f,i  

^a UNIVERSITY OF MANCHESTER   (United Kingdom)

^b FREEMAN HOSPITAL   (United Kingdom)

^c NATIONAL HEART AND LUNG INSTITUTE   (United Kingdom)

^d HAMMERSMITH HOSPITAL   (United Kingdom)

^e ROYAL HALLAMSHIRE HOSPITAL   (United Kingdom)

^f ROYAL BROMPTON AND HAREFIELD NHS FOUNDATION TRUST   (United Kingdom)

^g GOLDEN JUBILEE NATIONAL HOSPITAL   (United Kingdom)

^h Pulmonary Hypertension Association UK   (United Kingdom)

ⁱ MATER MISERICORDIAE UNIVERSITY HOSPITAL   (Ireland)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; AGED; CAMBRIDGE PULMONARY HYPERTENSION OUTCOME SURVEY; CLINICAL ASSESSMENT TOOL; CLINICAL PRACTICE; CONCURRENT VALIDITY; CONFERENCE PAPER; CONTROLLED STUDY; DISEASE ASSOCIATION; EMPHASIS 10; FEMALE; GEOGRAPHIC DISTRIBUTION; HUMAN; INTERMETHOD COMPARISON; INTERVIEW; IRELAND; MAJOR CLINICAL STUDY; MALE; POPULATION RESEARCH; PRIORITY JOURNAL; PULMONARY HYPERTENSION; QUALITY OF LIFE; QUALITY OF LIFE INDEX; RASCH ANALYSIS; STRUCTURED QUESTIONNAIRE; TEST RETEST RELIABILITY; UNITED KINGDOM; VALIDATION STUDY; VERY ELDERLY; CLINICAL TRIAL; HYPERTENSION, PULMONARY; MIDDLE AGED; MULTICENTER STUDY; PATHOLOGY; PROCEDURES; PSYCHOLOGY; PSYCHOMETRY; PULMONARY ARTERY; PULMONOLOGY; QUESTIONNAIRE; REPRODUCIBILITY; STANDARDS; STATISTICAL MODEL;

AGED; FEMALE; GREAT BRITAIN; HUMANS; HYPERTENSION, PULMONARY; IRELAND; MALE; MIDDLE AGED; MODELS, STATISTICAL; PSYCHOMETRICS; PULMONARY ARTERY; PULMONARY MEDICINE; QUALITY OF LIFE; QUESTIONNAIRES; REPRODUCIBILITY OF RESULTS;

EID: 84897446258     PISSN: 09031936     EISSN: 13993003     Source Type: Journal    
DOI: 10.1183/09031936.00127113     Document Type: Conference Paper

References (30)

1. Yi L, Johnson M, Kiely D.G., et al Changing demographics and epidemiology of incident idiopathic pulmonary arterial hypertension. Am J Respir Crit Care Med 2012; 186: 790-796.
2. Hurdman J, Condliffe R, Elliot C.A., et al ASPIRE Registry: assessing the spectrum of pulmonary hypertension identified at a referral centre. Eur Respir J 2012; 39: 945-955.
3. Kiely DG, Elliot CA, Sabroe I, et al Pulmonary hypertension: diagnosis and management. BMJ 2013; 346: f2028.
4. Armstrong I, Harries C, Rochnia N., et al The trajectory to diagnosis with pulmonary hypertension: a qualitative study. BMJ Open 2012; 2: e000806.
5. McDonough A, Matura LA, Carroll DL Symptom experience of pulmonary arterial hypertension patients. Clin Nurs Res 2011; 20: 120-134.
6. Lowe B, Grafe K, Ufer C., et al Anxiety and depression in patients with pulmonary hypertension. Psychosom Med 2004; 66: 831-836.
7. Flattery MP, Pinson JM, Savage L, et al Living with pulmonary arterial hypertension: patient's experiences. Heart Lung 2005; 34: 99e107.
8. McKenna SP, Doughty N, Meads D.M., et al The Cambridge pulmonary hypertension outcome review (CAMPHOR): a measure of health-related quality of life and quality of life for patients with pulmonary hypertension. Qual Life Res 2006; 15: 103-115.
9. Ware JE, Kosinski M, Dewey J.E., eds. How to score version 2 of the SF-36 health survey. Lincoln, QualityMetric Incorporated, 2000.
10. Hunt SM, McEwan J. The development of a subjective health indicator. Soc Health Illness 1980; 2: 231-246.
11. Rector TS, Kubo SH, Cohn JN Patients' self-assessment of their congestive heart failure. Part 2: Content, reliability and validity of a new measure, the Minnesota Living with Heart Failure questionnaire. Heart Failure 1987; 3: 198-209.
12. Gomberg-Maitlan M., Thenaappan T, Rizvi K., et al United States validation of the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR). J Heart Lung Trasplant 2008; 27: 124-130.
13. Coffin D, Duval K, Martel S., et al Adaptation of the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) into French-Canadian and English-Canadian. Can Respir J 2008; 15: 77-83.
14. Ganderton L, Jenkins S, McKenna S.P., et al Validation of the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) for the Australian and New Zealand population. Respirology 2011; 16: 1235-1240.
15. Taichman DB, Shin J, Hud J., et al Health-related quality of life in patients with pulmonary arterial hypertension. Respir Res 2005; 6: 92.
16. Suntharalingam J, Treacy CM, Doughty N.J., et al Long-term use of sildenafil in inoperable chronic thromboembolic pulmonary hypertension. Chest 2008; 229-236.
17. Galie N, Hoeper MM, Humbert M, et al Guidelines for the diagnosis and treatment of pulmonary hypertension. Eur Heart J 2009; 30: 2493-2537.
18. Drennan J. Cognitive interviewing: verbal data in the design and pretesting of questionnaires. J Adv Nurs 2003; 42: 57-63.
19. Cenedese E, Speich R, Dorschner S., et al Measurement of quality of life in pulmonary hypertension and its significance. Eur Respir J 2006; 28: 808-815.
20. Zlupko M, Harhay MO, Gallop R, et al Evaluation of disease-specific health-related quality of life in patients with pulmonary arterial hypertension. Respir Med 2008; 102: 1431-1438.
21. Yorke J, Moosavi SH, Shuldham C, et al Quantification of breathlessness using descriptors: development and initial testing of Dyspnoea-12. Thorax 2010; 65: 21-26.
22. Yore J, Armstrong I. The assessment of breathlessness in pulmonary arterial hypertension: reliability and validity of the Dyspnoea-12. Eur J Cardiovasc Nurs 2013 [In press DOI: 10.1177/1474515113514891].
23. Zigmond AS, Snaith RP The hospital anxiety and depression scale. Acta Psychiatr Scandinavica 1983; 67: 361-370.
24. Yorke J, Horton M, Jones PW A critique of Rasch analysis using the Dyspnoea-12 as an illustrative example. J Adv Nurs 2011; 68: 191-98.
25. O'Leary C.J., Jones PW The influence of decisions made by developers on health status questionnaire content. Qual Life Res 1998; 7: 545-550.
26. Rattray J, Jones MC Essential elements of questionnaire design and development. J Clin Nurs 2007; 16: 234-243.
27. Pallant JF, Tennant A. An introduction to the Rasch measurement model: an example using the Hospital Anxiety and Depression Scale (HADS). Br J Clin Psychol 2007; 46: 1-18.
28. Cronbach L. Coefficient alpha and the internal structure of tests. Psychometrika 1951; 22: 293e6.
29. Bland J, Altman D. Statistical methods for assessing agreement between two methods of clinical measurement. Lancet 1986; 1: 307e10.
30. Jones PW, Harding G, Berry P., et al Development and first validation of the COPD Assessment Test. Eur Respir J 2009; 34: 648-654.