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The Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR): A Measure of Health-Related Quality of Life and Quality of Life for Patients with Pulmonary Hypertension

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Abstract

Objective: No outcome measures specific to pulmonary hypertension (PH) currently exist. The aim of the study was to develop health-related quality of life (symptoms and functioning) scales and a quality of life scale that would allow comprehensive, accurate and valid patient-reported outcome assessment in clinical studies. Methods: The content of the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) was derived from qualitative interviews conducted with 35 patients. Item reduction was based on the analysis of responses to a postal survey (n=75) and patient interviews (n=15) designed to determine face and content validity. A final postal validation study (n=91) was performed to determine reproducibility and construct validity. Results: The questionnaire was well received by participants who found it to be relevant, comprehensible and quick and easy to complete. Rasch and factor analyses were conducted to ensure unidimensionality of the final CAMPHOR scales; Overall symptoms (made up of Energy, Breathlessness and Mood subscales), Functioning and Quality of life. The CAMPHOR scales had good internal consistency (α=0.90–0.92) and reproducibility (test–retest correlations=0.86–0.92). They also exhibited convergent, divergent and known groups validity. Conclusions: The CAMPHOR is a valuable new instrument for assessing patient-reported outcome in PH clinical trials and routine practice.

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Abbreviations

CAMPHOR:

Cambridge Pulmonary Hypertension Outcome Review

CTEPH:

Chronic Thrombotic and/or Embolic Disease

EQ-5D:

EuroQoL

HRQL:

health-related quality of life

NHP:

Nottingham Health Profile

NSCAG:

National Specialist Commissioning Advisory Group

NYHA:

New York Heart Association classification

PH:

Pulmonary Hypertension

PVDU:

Pulmonary Vascular Disease Unit

QoL:

Quality of Life

RUMM:

Rasch Unidimensional Measurement Model

VAS:

visual analogue scale

References

  1. LJ Rubin (1997) ArticleTitlePrimary pulmonary hypertension N Engl J Med 336 111–117 Occurrence Handle10.1056/NEJM199701093360207 Occurrence Handle1:STN:280:ByiC3s%2Fgs1w%3D Occurrence Handle8988890

    Article  CAS  PubMed  Google Scholar 

  2. GE D’Alonzo RJ Barst SM Ayres et al. (1991) ArticleTitleSurvival in patients with primary pulmonary hypertension. Results from a national prospective registry Ann Int Med 115 343–349 Occurrence Handle1:STN:280:By6A387hsF0%3D Occurrence Handle1863023

    CAS  PubMed  Google Scholar 

  3. JSR Gibbs TW Higgenbottam (2001) ArticleTitleRecommendations on the management of pulmonary hypertension in clinical practice Heart 86(Suppl) i1–i13

    Google Scholar 

  4. N Galie A Manes A Branzi (2003) ArticleTitleProstanoids for pulmonary arterial hypertension Am J Respir Med 2 IssueID2 123–137 Occurrence Handle1:CAS:528:DC%2BD3sXksFSksLk%3D Occurrence Handle14720012

    CAS  PubMed  Google Scholar 

  5. SA Myers GS Ahearn M Angelica Selim VF Tapson (2004) ArticleTitleCutaneous findings in patients with pulmonary arterial hypertension receiving long-term epoprostenol therapy J Am Acad Dermatol 51 IssueID1 98–102 Occurrence Handle10.1016/j.jaad.2003.12.032 Occurrence Handle15243533

    Article  PubMed  Google Scholar 

  6. A Kadikar J Maurer S Kesten (1997) ArticleTitleThe six-minute walk test: A guide to assessment for lung transplantation J Heart Lung Transplant 16 IssueID3 313–319 Occurrence Handle1:STN:280:ByiB2c3ovFE%3D Occurrence Handle9087875

    CAS  PubMed  Google Scholar 

  7. GA Borg (1982) ArticleTitlePsychophysical bases of perceived exertion Med Sci Sports Exerc 14 IssueID5 377–381 Occurrence Handle1:STN:280:BiyC3Mvkt1U%3D Occurrence Handle7154893

    CAS  PubMed  Google Scholar 

  8. SM Hunt J McEwen SP McKenna (1986) Measuring Health Status Croom Helm London

    Google Scholar 

  9. InstitutionalAuthorNameEuroQoL Group (1990) ArticleTitleEuroQoL: A new facility for the measurement of health-related quality of life Health Policy 16 199–208

    Google Scholar 

  10. JE Ware KK Snow M Kosinski B Gandek (1993) SF-36 Health Survey: Manual and Interpretation Guide The Health Institute, New England Medical Centre Boston, MA

    Google Scholar 

  11. N Galie M Humbert JL Vachiery et al. (2002) ArticleTitleEffects of beraprost sodium, an oral prostacyclin analogue, in patients with pulmonary arterial hypertension: A randomized double-blind, placebo-controlled trial J Am Coll Cardiol 39 IssueID9 1496–1502 Occurrence Handle1:CAS:528:DC%2BD38XktVKksbY%3D Occurrence Handle11985913

    CAS  PubMed  Google Scholar 

  12. G Simonneau RJ Barst N Galie et al. (2002) ArticleTitleTreprostinil Study Group. Continuous subcutaneous infusion of treprostinil, a prostacyclin analogue, in patients with pulmonary arterial hypertension: A double-blind, randomized, placebo-controlled trial Am J Respir Crit Care Med 165 IssueID6 800–804 Occurrence Handle11897647

    PubMed  Google Scholar 

  13. H Olschewski G Simonneau N Galie et al. (2002) ArticleTitleInhaled iloprost for severe pulmonary hypertension N Engl J Med 347 IssueID5 322–329 Occurrence Handle10.1056/NEJMoa020204 Occurrence Handle1:CAS:528:DC%2BD38XlslWqt7c%3D Occurrence Handle12151469

    Article  CAS  PubMed  Google Scholar 

  14. P Dixon J Heaton A Long A Warburton (1994) ArticleTitleReviewing and applying the SF-36 Outcomes Briefing August 4 3–25

    Google Scholar 

  15. S Ziebland (1995) ArticleTitleThe short form 36 health status questionnaire: Clues from the Oxford region’s normative data about its usefulness in measuring health gain in population surveys J Epidemiol Community Health 49 102–105 Occurrence Handle1:STN:280:ByqB383hvVM%3D Occurrence Handle7706993 Occurrence Handle10.1136/jech.49.1.102

    Article  CAS  PubMed  Google Scholar 

  16. F Wolfe DJ Hawley (1997) ArticleTitleMeasurement of the quality of life in rheumatic disorders using the EuroQol Br J Rheumatol 36 786–793 Occurrence Handle10.1093/rheumatology/36.7.786 Occurrence Handle1:STN:280:ByiA1MfpvVI%3D Occurrence Handle9255115

    Article  CAS  PubMed  Google Scholar 

  17. RS Rector SH Kubo JN Cohn (1987) ArticleTitlePatients’ self-assessment of their congestive heart failure Heart Fail 1 198–209

    Google Scholar 

  18. InstitutionalAuthorNameWorld Health Organization (2001) International Classification of Functioning, Disability and Health WHO Publication Geneva

    Google Scholar 

  19. SM Hunt SP McKenna (1992) ArticleTitleThe QLDS: A scale for the measurement of quality of life in depression Health Policy 22 307–319 Occurrence Handle10.1016/0168-8510(92)90004-U Occurrence Handle1:STN:280:ByyC3c%2FisFw%3D Occurrence Handle10122730

    Article  CAS  PubMed  Google Scholar 

  20. SJ Holmes SP McKenna LC Doward SM Shalet (1995) ArticleTitleDevelopment of a questionnaire to assess the quality of life of adults with growth hormone deficiency Endocrinol Metab 2 63–69

    Google Scholar 

  21. TH Wagner DL Patrick SP McKenna MA Froese (1996) ArticleTitleCross-cultural development of a quality of life measure for men with erection difficulties Qual Life Res 5 443–449 Occurrence Handle10.1007/BF00449919 Occurrence Handle1:STN:280:BymH3sfktVE%3D Occurrence Handle8840824

    Article  CAS  PubMed  Google Scholar 

  22. Z Jong Particlede D Heijde Particlevan der SP McKenna D Whalley (1997) ArticleTitleThe reliability and construct validity of the RAQoL: A rheumatoid arthritis-specific quality of life instrument Br J Rheumatol 36 878–883 Occurrence Handle9291857

    PubMed  Google Scholar 

  23. SP McKenna LC Doward K Mackenzie Davey (1998) ArticleTitleThe development and psychometric properties of the MSQOL; a migraine-specific quality-of-life instrument Clin Drug Invest 15 413–423 Occurrence Handle1:STN:280:DC%2BD1c3ht1agtQ%3D%3D

    CAS  Google Scholar 

  24. LC Doward SP McKenna T Kohlmann et al. (1998) ArticleTitleThe international development of the RGHQoL: A quality of life measure for recurrent genital herpes Qual Life Res 7 143–153 Occurrence Handle10.1023/A:1008857426633 Occurrence Handle1:STN:280:DyaK1c7osVSqtQ%3D%3D Occurrence Handle9523496

    Article  CAS  PubMed  Google Scholar 

  25. SP McKenna D Whalley AL Dewar RA Erdman T Kohlman M Niero et al. (2005) ArticleTitleInternational development of the Parents’ Index of Quality of life in Atopic Dermatitis (PIQoL-AD) Qual Life Res 14 231–241 Occurrence Handle10.1007/s11136-004-4231-z Occurrence Handle15789957

    Article  PubMed  Google Scholar 

  26. SP McKenna SA Cook D Whalley et al. (2003) ArticleTitleDevelopment of the PSORIQoL, a psoriasis-specific measure of quality of life designed for use in clinical practice and trials Br J Dermatol 149 IssueID2 323–331 Occurrence Handle10.1046/j.1365-2133.2003.05492.x Occurrence Handle1:STN:280:DC%2BD3szpsFCrsg%3D%3D Occurrence Handle12932239

    Article  CAS  PubMed  Google Scholar 

  27. LC Doward A Spoorenberg SA Cook et al. (2003) ArticleTitleDevelopment of the ASQoL: A quality of life instrument specific to ankylosing spondylitis Ann Rheum Dis 62 20–26 Occurrence Handle10.1136/ard.62.1.20 Occurrence Handle1:STN:280:DC%2BD38jjvFyqsA%3D%3D Occurrence Handle12480664

    Article  CAS  PubMed  Google Scholar 

  28. SP McKenna LC Doward D Whalley A Tennant P Emery DJ Veale (2004) ArticleTitleDevelopment of the PsAQoL: A quality of life instrument specific to psoriatic arthritis Ann Rheum Dis 63 IssueID2 162–169 Occurrence Handle10.1136/ard.2003.006296 Occurrence Handle1:STN:280:DC%2BD2c%2Fit1Omuw%3D%3D Occurrence Handle14722205

    Article  CAS  PubMed  Google Scholar 

  29. G Rasch (1980) Probabilistic Models for some Intelligence and Attainment Tests University of Chicago Press Chicago

    Google Scholar 

  30. D Andrich (1988) Rasch Models for Measurement Sage Publications London

    Google Scholar 

  31. EA Weiner BJ Stewart (1984) Assessing Individuals Little Brown Boston

    Google Scholar 

  32. D Streiner G Norman (1989) Health Measurement Scales Oxford University Press Oxford

    Google Scholar 

  33. SP McKenna D Whalley LC Doward (2000) ArticleTitleWhich outcomes are important in schizophrenia trials? Int J Methods Psychiatr Res 9 IssueID1 S58–S67

    Google Scholar 

  34. SP McKenna LC Doward (2004) ArticleTitleThe Needs-Based Approach to Quality of Life Assessment Value Health 7 IssueIDs1 S1–S3 Occurrence Handle15367235

    PubMed  Google Scholar 

  35. A Tennant SP McKenna P Hagell (2004) ArticleTitleApplication of Rasch analysis in the development and application of quality of life instruments Value Health 7(s1) S22–S26

    Google Scholar 

  36. SB Detmar MJ Muller JH Schornagel et al. (2002) ArticleTitleHealth-related quality of life assessments and patient–physician communication: A randomized controlled trial JAMA 288 3027–3034 Occurrence Handle10.1001/jama.288.23.3027 Occurrence Handle12479768

    Article  PubMed  Google Scholar 

  37. LC Doward SP McKenna (1997) Evolution of quality of life assessment R Rajagopalan EF Sheretz RT Anderson (Eds) Care Management of Skin Diseases: Life Quality and Economic Impact Marcel Dekker New York 9–33

    Google Scholar 

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McKenna, S.P., 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 15, 103–115 (2006). https://doi.org/10.1007/s11136-005-3513-4

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