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Quality of Life Research

, Volume 25, Issue 5, pp 1179–1188 | Cite as

Patient-relevant needs and treatment goals in nail psoriasis

  • C. BlomeEmail author
  • A. Costanzo
  • E. Dauden
  • C. Ferrandiz
  • G. Girolomoni
  • R. Gniadecki
  • L. Iversen
  • A. Menter
  • K. Michaelis-Wittern
  • A. Morita
  • H. Nakagawa
  • K. Reich
  • M. Augustin
Article

Abstract

Purpose

Patient-centered health care implies that medical decisions are made jointly by physician and patient, based on patient needs. Aims were to (a) identify treatment goals for a new questionnaire on patient needs and benefits in nail psoriasis treatment; (b) analyze the importance of treatment goals in patients with nail psoriasis in general and in defined subgroups; and (c) determine the association between overall treatment goal importance and quality of life.

Methods

The study comprised the following steps: qualitative survey on needs and burdens in 120 patients; development of items by an interdisciplinary expert group; item testing in 55 patients in four countries; revision of the questionnaire and assessment in 203 patients in six countries (Germany, Denmark, Italy, Spain, USA, Japan). The percentage of patients rating the goals as ‘quite/very important’ was compared between various patient subgroups.

Results

Based on 692 free-text statements, 26 items were developed which were reduced to 24 items after pilot testing. Each of these treatment goals applied to the majority of patients in the multi-center study. Goal importance increased with severity of nail psoriasis, but not with age or disease duration. Manual dexterity and social interaction were of particular importance. Goal importance and quality of life were associated, but not redundant (r = 0.612, p < 0.001).

Conclusions

Patients with nail psoriasis have manifold and specific treatment goals. Goal importance is a construct different from disease-specific quality of life and should be assessed separately. The new questionnaire can support goal setting in clinical practice.

Keywords

Nail psoriasis Patient preferences Quality of life Treatment goals Shared decision-making 

Notes

Acknowledgments

We thank Mario Gehoff and Verena Heimann for assistance in manuscript preparation and submission.

Funding

The study was supported by an unrestricted grant from Merck Sharp and Dohme Corp., a subsidiary of Merck & Co., Inc., Whitehouse Station, NJ, USA.

Compliance with ethical standards

Conflict of interest

C.B. has served as a paid speaker for Lilly and medi, and has received a travel grant from Kreussler. M.A. has served as a consultant and/or paid speaker for and/or participated in clinical trials sponsored by companies that manufacture drugs used for the treatment of psoriasis, including Abbott, Almirall, Amgen, Biogen Idec, Celgene, Centocor, Janssen-Cilag, LEO Pharma, Medac, Merck Sharp and Dohme (formerly Essex, Schering-Plough), Novartis and Pfizer (formerly Wyeth). M.A. is a license holder of the NAPPA tools. A.C. has served as a consultant and/or paid speaker for and/or participated in clinical trials sponsored by companies that manufacture drugs used for the treatment of psoriasis, including Amgen, Abbott, Boehringer-Ingelheim, Celgene, Janssen, Merck Serono, Merck Sharp and Dohme and Pfizer. E.D. has served as a consultant and/or paid speaker for and/or participated in clinical trials sponsored by companies that manufacture drugs used for the treatment of psoriasis, including AbbVie (Abbott), Amgen, Centocor Ortho Biotech Inc., Glaxo-SmithKline, Janssen-Cilag, LEO Pharma, Novartis, Pfizer (Wyeth). Merck Sharp and Dohme (Schering-Plough) and Celgene. C.F. has served as a consultant and/or paid speaker for and/or participated in clinical trials sponsored by companies that manufacture drugs used for the treatment of psoriasis, including AbbVie, Almirall, Amgen, Celgene, Centocor, Janssen-Cilag, LEO Pharma, Lilly, Merck Sharp and Dohme, Novartis and Pfizer. G.G. has served as a consultant and/or paid speaker for and/or participated in clinical trials sponsored by companies that manufacture drugs used for the treatment of psoriasis, including Abbott, Actelion, Almirall, Astellas, Boehringer-Ingelheim, Celgene, Galderma, GlaxoSmithKline, Janssen, LEO Pharma, Merck Serono, Merck Sharp and Dohme, Novartis and Pfizer. R.G. has served as a consultant and/or paid speaker for and/or participated in clinical trials sponsored by companies that manufacture drugs used for the treatment of psoriasis, including AbbVie, Actelion, Almirall, Celgene, Janssen, Merck Serono, Merck Sharp and Dohme, Novartis and Pfizer. L.I. has served as a consultant and/or paid speaker for and/or participated in clinical trials sponsored by companies that manufacture drugs used for the treatment of psoriasis, including AbbVie, Almirall, Amgen, Celgene, Centocor, Eli Lilly, Janssen-Cilag, LEO Pharma, Merck Sharp and Dohme, Novartis and Pfizer. A. Menter has served as a consultant and/or paid speaker for and/or participated in clinical trials sponsored by companies that manufacture drugs used for the treatment of psoriasis, including Abbott, Allergan, Amgen, Celgene, Eli Lilly, Galderma, Janssen, LEO Pharma, Novartis, Novo Nordisk, Pfizer, Stiefel, Syntrix Biosystems and Wyeth. A. Morita has served as a consultant and/or paid speaker for and/or participated in clinical trials sponsored by companies that manufacture drugs used for the treatment of psoriasis, including AbbVie (formerly Abbott), Mitsubishi Tanabe, Janssen, Novartis, Eli Lilly, Kyowa-Kirin, LEO Pharma, Maruho and Merck Sharp and Dohme. H.N. has served as a consultant and/or paid speaker for and/or participated in clinical trials sponsored by companies that manufacture drugs used for the treatment of psoriasis, including AbbVie (formerly Abbott), Mitsubishi Tanabe, Janssen, Novartis, Eli Lilly, Kyowa-Kirin, LEO Pharma, Maruho and Merck Sharp and Dohme. K.R. has served as a consultant and/or paid speaker for and/or participated in clinical trials sponsored by companies that manufacture drugs used for the treatment of psoriasis, including Abbott, Biogen Idec, Celgene, Centocor, Janssen-Cilag, LEO Pharma, Medac, Merck Sharp and Dohme (formerly Essex, Schering-Plough), Novartis and Pfizer (formerly Wyeth). K.R. is a license holder of the NAPPA tools.

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Copyright information

© Springer International Publishing Switzerland 2015

Authors and Affiliations

  • C. Blome
    • 1
    Email author
  • A. Costanzo
    • 2
  • E. Dauden
    • 3
  • C. Ferrandiz
    • 4
  • G. Girolomoni
    • 5
  • R. Gniadecki
    • 6
  • L. Iversen
    • 7
  • A. Menter
    • 8
  • K. Michaelis-Wittern
    • 9
  • A. Morita
    • 10
  • H. Nakagawa
    • 11
  • K. Reich
    • 12
  • M. Augustin
    • 1
  1. 1.Institute for Health Services Research in Dermatology and Nursing (IVDP), German Center of Health Services Research in Dermatology (CVderm)University Medical Center Hamburg-EppendorfHamburgGermany
  2. 2.Dermatology Unit, NESMOS Department, Department of DermatologyUniversity of Rome ‘Tor Vergata’RomeItaly
  3. 3.Department of DermatologyHospital Universitario de la PrincesaMadridSpain
  4. 4.Servicio de Dermatología, Hospital Universitari Germans Trias i PujolUniversitat Autònoma de BarcelonaBarcelonaSpain
  5. 5.Clinica DermatologicaUniversità di VeronaVeronaItaly
  6. 6.Bispebjerg HospitalUniversity of CopenhagenCopenhagen NVDenmark
  7. 7.Department of DermatologyAarhus University HospitalAarhus CDenmark
  8. 8.Baylor Research InstituteBaylor University Medical CenterDallasUSA
  9. 9.SCIderm GmbHHamburgGermany
  10. 10.Department of Geriatric and Environmental DermatologyNagoya City University Graduate School of Medical SciencesNagoyaJapan
  11. 11.Department of DermatologyThe Jikei University, School of MedicineTokyoJapan
  12. 12.Dermatologikum HamburgHamburgGermany

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