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DOI: 10.1111/j.1468-3083.2009.03344.x

ORIGINAL ARTICLE

Development and validation of nail psoriasis quality of life


scale (NPQ10)
JP Ortonne,,* R Baran, M Corvest, C Schmitt, JJ Voisard,** C Taieb

University Hospital Nice, France


Nails Diseases Center, Cannes, France

APLCP, France

Public Health and Quality of Life, PFSA, Boulogne Billancourt, France


**Medical Department, PFD, Lavaur, France
*Correspondence: JP Ortonne. E-mail: ortonne@unice.fr

Abstract
Background The chronic and treatment-resistant nature of nail psoriasis affects patients lives not only physically but
also psychologically. Although there are scoring systems available for disease severity, there is as yet no scale to evaluate
the impact of this condition upon the patients quality of life.
Objectives This study aims to develop and validate a quality of life scale specifically for nail psoriasis.
Methods A questionnaire was developed during a study conducted in France between 2004 and 2005. With the
cooperation of lAssociation Pour la Lutte Contre le Psoriasis, the questionnaire was sent to a random sample of 4000
of its 17 000 members.
Results The response rate was 33%. Of the 1309 questionnaires returned, 795 showed the presence of nail psoriasis
and these were eligible. The scale score is obtained by adding together the responses to the 10 questionnaire items and
the result is expressed as a percentage. The value of the score obtained is proportional to the functional difficulty
experienced. The determination of Cronbachs a coefficient and a Principal Component Factor Analysis show,
respectively, very good internal consistency and the unidimensional nature of the scale. Testretest results on 15 patients
showed good reproducibility. Results were validated with reference to the Dermatology Life Quality Index.
In this study, the NPQ10 score is significantly influenced by gender (women have a higher score) and by the duration
of psoriasis (recent onset implies greater functional difficulty). Finally, the score is much higher when the nail psoriasis
affects both the hands and the feet.
Conclusion This study confirms a change in the quality of life of patients who have nail psoriasis. The NPQ10 scale,
specific to this condition, is simple to use and has the attributes needed in a quality of life scale. The scale must now be
tested in longitudinal studies (such as clinical trials) to confirm its ability to measure a change in status.
Received: 16 April 2009; Accepted 6 May 2009

Keywords
nails, psoriasis, quality of life, questionnaires, severity of illness

Conflicts of interest
None declared.

Introduction
Psoriasis is a common dermatosis (affecting 1.5% to 3.0% of the
population in Europe) which features nail involvement in 10%
to 78% of cases.14 This percentage increases to 80% to 90% in patients
with psoriatic arthropathy. Nail involvement is much less frequent
in children (7% to 13%).57 Eighty to ninety per cent of psoriatics
have nail changes during their lives.8 Nail psoriasis rarely occurs in
isolation but can precede skin eruptions by several years.

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Nail psoriasis engenders physical and psychological handicap


leading to alterations in the quality of life.3
Uptake of treatment for nail psoriasis remains disappointing.
Ten years ago, the study by de Jong in the Netherlands showed
that only 35.4% of patients with nail psoriasis were undergoing
treatment. In 19.3% of cases, this led to a clear improvement; in
35.0%, it had little effect, and for the remaining 45.7%, it was
apparently ineffective.3

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NPQ10 nail psoriasis quality of life scale

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The development of immuno-biological agents has enabled


the achievement of significant improvements in nail psoriasis
treatment.9 The effectiveness of treatment depends on the location
and nature of the nail involvement. It requires a combination of
manicure care with local and/or systemic treatments, or surgical
management.10,11 However, systemic treatments can only be used
in patients with severe psoriasis and psoriatic arthropathy.12
Measurement of the quality of life of patients is indispensable
to the evaluation of the therapeutic potential of different management strategies. However, although scales exist for the measurement
of quality of life in dermatoses generally, and for psoriasis in
particular, at present no quality of life scale allows evaluation specifically dedicated to the impact of nail involvement in psoriasis.

Reliability Internal consistency of the NPQ10 was measured by


Cronbachs a coefficient, which is the measure most frequently
used for this purpose. Coefficient scores > 0.7 usually indicate
good internal reliability.13
To study reproducibility, a second copy of the questionnaire
was sent to a sample of 30 patients who had previously participated
in the trial. The testretest results allow a check of the agreement
between scores obtained on two successive occasions, when there
is no evidence of a change in the clinical status of the patient. To
be certain of this, these 30 patients were requested to provide
information on any major life event since the previous occasion.
Agreement between the scores on the two occasions was measured
by the intra-group correlation coefficient.

Objectives

Validity Content validity: The validity of the items selected for

This study aims to present and validate a scale dedicated


specifically to the evaluation of the impact of nail psoriasis on
patients quality of life (Nail Psoriasis Quality of Life: NPQ10).
The objective was to create a tool which is quick and easy to
use, for both the patient and the dermatologist, allowing a
unidimensional score to be calculated in a few minutes. As the
purpose of our questionnaire is to evaluate handicaps resulting
from psoriasis of the nails, psoriatic arthropathy was not mentioned.

inclusion, the understandability and the acceptability of the


questions and of the means of responding were all assured by the
members who comprised the working group, which represented
patients and clinicians, and was systematically checked during the
development of the items.
Factorial structure validity: The unidimensionality of the scale
was validated using a Principal Component Factor Analysis.
Clinical validity: The ability of the scale to discriminate according to clinical severity (in the case of either single or dual location
of disease) was checked.
Construct validity: The scale was compared to an existing Gold
Standard, the Dermatology Life Quality Index (DLQI)14 by analysis of variance.

Materials and methods


Population studied

The 17 000 members of the Association Pour la Lutte Contre le


Psoriasis (APLCP) were arranged in an alphabetical order. Then,
we selected randomly one of them. After this random selection,
we included one patient every three patients till we obtained a
total of 4000 members. The patients were invited to fill in a
questionnaire and return it by post. Only one mailing was sent
to the 4000 members without any incentive offered. Only individuals
with psoriasis involving the nails were to answer the questions
specific to nail psoriasis.
The study protocol was reviewed and approved by a scientific
committee (including patients and dermatologists). It was not
reviewed by any research ethics committee because there was no
modification of the patients psoriasis care.

Results
Study population
Demographic and clinical characteristics From the random
sample of 4000 members of the APLCP, 1309 questionnaires were
returned. The mean age of those who responded was 51.8 years; 57%
were men and 43% were women; the duration of their psoriasis was
more than 5 years in 88%, 1 to 5 years in 11% (see Table 1).

Table 1 Description of the study population

Development and validation of the scale

Gender, N (%)

Generation of scale items and responses The questionnaire


items were selected by a working group comprised of experts in
dermatological research, representatives of a patient association,
and experts on quality of life. The most suitable items were
chosen, summarized and grouped very clearly.

Age (years)

Duration of psoriasis

Women

547 (43%)

Men

733 (57%)

Mean (range)

51.8 (495)

39

306 (25%)

4053

311 (25%)

5464

322 (26%)

65

297 (24%)

Less than 6 months

5 (0.4%)

Organization of dimensions This is a unidimensional ques-

6 months to 1 years

9 (0.7%)

tionnaire constructed to address the physical aspects associated


with nail psoriasis.

1 to 5 years

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More than 5 years

138 (10.8%)
1125 (88.1%)

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Journal compilation 2009 European Academy of Dermatology and Venereology

Ortonne et al.

24

Among the returned questionnaires, 795 (61%) were from


patients with nail psoriasis. Nail involvement affected only
the hands in 27%, only the feet in 16%, and both hands and feet in
57%. These proportions were consistent with those found in the
literature.1,3 The mean number of fingernails and toenails affected
was 5.9 and 5.2, respectively.
Thickening of the nail was reported by 87% of patients with nail
psoriasis, whitening by 85% and pitting by 62%, giving the nail a
thimble-like appearance. Nail psoriasis was associated with the presence of cutaneous lesions in 94% of cases and with joint pain in 54%.
Patient complaints regarding nail involvement and therapeutic management Nail psoriasis was considered by 86% of

patients as being a bothersome condition, by 87% as unsightly,


and by 59% as painful. The number of nails involved significantly
affected the pain experienced, functional awkwardness and aesthetic
impact. Although 86% of patients were receiving treatment, the
benefit of this was expressed as low, with 72% of patients
dissatisfied with treatment.
Properties of NPQ10
Generation of scale items and responses The process of
selecting items resulted in 10 questions, with three responses possible
for each one (see Table 2). The first question is concerned with the
intensity of the pain of nail psoriasis; the other nine are linked to
the functional impairment caused by nail psoriasis in daily life. A
preliminary question determines the location of the nail psoriasis
(hands only, feet only, or both). For the calculation of scores, the
following rules were developed: each response is scored from 0 to 2,
with the response no without hesitation or not painful scoring
0, the response yes, sometimes or not very painful scoring 1,
and the response yes without hesitation or very painful scoring 2.
The total score is obtained by adding together the scores for the
10 questions. The items all have the same weight, making for ease
of use and understanding of the tool.
Item 2 Difficulty putting on shoes is specific to psoriasis of the
toenails, and item 6 Difficulty turning the key in the door is
specific to psoriasis of the fingernails. Item 7 Difficulty driving
requires that a patient drives a car in order to be able to respond.
Missing data are replaced by a zero for this item.
To take account of this specificity in the analysis, and in order to
enable comparisons to be made, scores are converted to
percentages, based on the number of questions it was possible for
a specific patient to answer. In this way, whatever the location of
the nail psoriasis, the final score will be between 0 and 100.
Like most existing specific scales, the higher the score, the more
the quality of life is decreased.
Grouping of scale items The candidate items were selected so
as to best characterize the size of the functional impairment linked
to nail psoriasis in the daily life of patients.

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Figure 1 Analysis of principal components: percentage of variance


explained by each component. A Principal Components Factorial
Analysis was conducted to test the construct validity of the scale:
49% of the total variance was explained by the first component.
This finding supports the unidimensional structure of our scale.

Reliability Internal consistency: The Cronbach a coefficient is


0.88, signifying very good internal consistency of the scale.
Testretest: Of the 30 questionnaires sent out for testretest, 22
were returned. However, only 15 were considered usable because
the other seven patients reported a significant change in clinical
status. The intra-group coefficient of variation between the two
occasions was 0.81885. This result reflects very good reproducibility
of the NPQ10 questionnaire.
Validity Factorial structure validity: According to the Principal

Component Factor Analysis, one component of the questionnaire


accounted for 49% of the total variance (Fig. 1). We can conclude
from this that our scale has a unidimensional structure. In
practical terms, this validates the calculation of a single NPQ10
score, which brings together all the items.
Clinical validity: The NPQ10 score is significantly higher
(P < 0.0001) in patients with dual location (hands and feet) of nail
involvement, which validates the scales ability to discriminate
according to clinical disease severity (see Fig. 2).
Construct validity: The results presented in Fig. 3 show good
agreement between DLQI and NPQ10, individuals having an
NPQ10 score higher than 25 have a DLQI score of 13.4, while
those with an NPQ10 score of less than 10 have a DLQI score
of 6.2. The correlation between the NPQ10 and DLQI scores is
positive with a coefficient of correlation of 0.48 (Table 3). This
indicates that the NPQ10 and DLQI scores change in the same

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NPQ10 nail psoriasis quality of life scale

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Table 2 Questionnaire on the quality of life specific to nail psoriasis


State the location of your psoriasis of the nails
1. Fingernails

2. Toenails

3. Both

2. Not very painful

3. Not painful

1. Would you say that your psoriasis of the nails is mostly:


1. Very painful

2. Because of my psoriasis of the nails, I have difficulty putting my shoes on:


1. Always

2. Sometimes

3. Never

3. Because of my psoriasis of the nails, I dont do any of the jobs I usually do around the house:
1. Always

2. Sometimes

3. Never

4. Because of my psoriasis of the nails, I get dressed more slowly than usual:
1. Always

2. Sometimes

3. Never

5. Because of my psoriasis of the nails, I have trouble putting on my socks (or stockings or tights):
1. Always

2. Sometimes

3. Never

6. Because of my psoriasis of the nails, I have trouble turning my door key:


1. Always

2. Sometimes

3. Never

7. Because of my psoriasis of the nails, I have trouble driving my car:


1. Always

2. Sometimes

3. Never

8. Because of my psoriasis of the nails, someone helps me to get dressed:


1. Always

2. Sometimes

3. Never

9. Because of my psoriasis of the nails, I avoid doing big jobs around the house:
1. Always

2. Sometimes

3. Never

10. Because of my psoriasis of the nails, I am more irritable than usual, and bad-tempered with people:
1. Always

2. Sometimes

3. Never

The questionnaire comprises 10 items, with three possible responses for each question. The first question considers pain (Very painful, Not very painful and
Not painful), the other 9 address functional impairment in daily life (Yes without hesitation, Yes, sometimes and No without hesitation). A preliminary
question clarifies the location of the nail psoriasis.

The original survey used:


Precisez la localisation de votre psoriasis des ongles:
p1 Ongles des mains

p2 Ongles des pieds

p3 Les deux

p2 Peu douloureux

p3 Pas douloureux

1-Diriez-vous que votre psoriasis des ongles est plutot:


p1 Tre`s douloureux

2-A cause de mon psoriasis des ongles, jai des difficultes a` me chausser:
p1 Oui sans hesiter

p2 Oui de temps en temps

p3 Non sans hesiter

3-A cause de mon psoriasis des ongles, je neffectue aucune des taches que jai lhabitude de faire a` la maison:
p1 Oui sans hesiter

p2 Oui de temps en temps

p3 Non sans hesiter

4-A cause de mon psoriasis des ongles, je mhabille plus lentement que dhabitude:
p1 Oui sans hesiter

p2 Oui de temps en temps

p3 Non sans hesiter

5-A cause de mon psoriasis des ongles, jai du mal a` mettre mes chaussettes (ou bas/collants):
p1 Oui sans hesiter

p2 Oui de temps en temps

p3 Non sans hesiter

6-A cause de mon psoriasis des ongles, jai du mal a` tourner la clef de ma porte:
p1 Oui sans hesiter

p2 Oui de temps en temps

p3 Non sans hesiter

7-A cause de mon psoriasis des ongles, jai du mal a` conduire ma voiture:
p1 Oui sans hesiter

p2 Oui de temps en temps

p3 Non sans hesiter

8-A cause de mon psoriasis des ongles, quelquun maide pour mhabiller:
p1 Oui sans hesiter

p2 Oui de temps en temps

p3 Non sans hesiter

9-A cause de mon psoriasis des ongles, jevite de faire de gros travaux a` la maison:
p1 Oui sans hesiter

p2 Oui de temps en temps

p3 Non sans hesiter

10-A cause de mon psoriasis des ongles, je suis plus irritable que dhabitude et de mauvaise humeur avec les gens:
p1 Oui sans hesiter

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p2 Oui de temps en temps

p3 Non sans hesiter

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Table 3 Correlation between NPQ10 and dimensions of the DLQI


Correlation with NPQ10
DLQI dimension
Symptoms, feelings

0.38

Daily activities

0.46

Leisure

0.37

Work

0.44

Personal relationships

0.34

Treatment

0.24

DLQI total

Figure 2 Mean NPQ10 score obtained for certain characteristics.


The effect of four characteristics (gender, age, psoriasis history and
location) on functional impairment was investigated. Female
gender, a shorter psoriasis history and dual location were all
associated with significantly higher NPQ10 scores, indicating
greater impairment.

0.48

The NPQ10 score was compared with the dimensions of the DLQI score to
assess the degree of agreement. The strongest correlation with the NPQ10
score was obtained with the total score of the DLQI (coefficient of correlation,
0.48) and the dimension daily activities (0.46).

total score of the DLQI and for the dimension daily activities
(Table 3).
Functional impairment (NPQ10 score) according to gender,
age and duration of psoriasis The NPQ10 score is significantly

influenced by gender: women have a higher score (P 0.04). It is


also significantly influenced by the duration of psoriasis: recent
diagnosis being associated with greater functional impairment
(P 0.014). By contrast, the NPQ10 score does not seem to be
influenced by age (Fig. 2).

Discussion

Figure 3 Total DLQI score by NPQ10 score. The NPQ10 score was
compared with the existing DLQI score to assess the degree of
agreement. The two scores were well correlated and changed in the
same direction. The coefficient of correlation was 0.48.

direction, although the coefficient being significantly lower than 1


indicates also that the NPQ10 obtains additional information on
quality of life which is not captured by the DLQI. Examination of
the correlations between the NPQ10 and the different dimensions
of the DLQI (symptoms, feelings, daily activities, leisure,
work, personal relationships and treatment) shows that the
strongest correlation with the NPQ10 score is obtained for the

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Of the random sample of 4000 members of APLCP, 1309 (33%)


questionnaires were returned.
This study was conducted to develop a new instrument to quantify the impact of nail psoriasis on quality of life by using a specific
questionnaire. All questions target specifically the impact of nail
psoriasis on the quality of life and do not capture the burden from
the other psoriatic lesions or psoriasis arthropathy. The study
establishes the validity of this tool and evaluates the quality of life
of a population suffering from nail psoriasis. With the cooperation of the APLCP, this study was able to involve a large number
of patients (1309). This sample comprises 43% women and 57%
men, consistent with the observation that psoriasis is not more
common in either gender.16 The percentage of nail involvement in
this study (61%) is comparable with that found in the literature.3
The fingernails are more often affected than the toenails, but most
often both the hands and the feet are affected, confirming findings
in previously published studies.16
Alteration in the quality of life of patients suffering from
nail psoriasis was first described by de Jong et al. in 1996,3 who
reported how the disease affects daily domestic and professional
life. Our results (86% of patients considering this disease as
bothersome, 87% as unsightly and 59% as painful) confirm those
of de Jong et al. This alteration in quality of life has been demonstrated by two scales: the DLQI and the NPQ10. The DLQI gave a

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NPQ10 nail psoriasis quality of life scale

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score of 8.3, compared with a score of 8.9 for severe psoriasis, 12.5
for atopic dermatitis and 4.5 for acne.14
Comparison of NPQ10 scores with DLQI scores shows good
agreement between the two scales, but without the appearance of
redundancy. This broad correlation is due to the high specificity
of the NPQ10 scale. It addresses only patients affected by nail
psoriasis, whereas the DLQI covers all dermatological pathologies.
Also, the NPQ10 is a unidimensional scale oriented more towards
functional impairment than the DLQI.
Scales exist for measuring quality of life for dermatoses in
general, and for psoriasis in particular.15 To date, no quality-of-life
scale exists for specifically evaluating the impact of the nail effects
of psoriasis. This is why our questionnaire specifically targets nail
symptoms.

Conclusion
The NPQ10 scale, specific to nail psoriasis, is very simple to use
and allows self-evaluation by the patient. This study demonstrates the
aptness of the instrument: understandability, reliability (testretest,
internal consistency), validity (unidimensional nature, comparison
with DLQI), discriminative ability (the score is higher in proportion
to the severity of the nail psoriasis). This validated instrument
must now be used during longitudinal studies (for example, in
clinical trials) in order to confirm that it can measure a change in
status over time in the same patient (before and after treatment).
The complaints expressed by patients in response to this
enquiry about the impact of nail psoriasis on the quality of daily
life demonstrate the need for the development of this type of
instrument for better understanding and thus, better overall management of these patients.

Acknowledgements
We acknowledge Dr Mike Matthews and Dr Catriona Urquhart
for their help in drafting the manuscript in the roles of translator
and medical writer on behalf of Laboratoires Pierre Fabre.

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This study was funded by the Public Health and Quality of Life
Department, PFSA, Boulogne Billancourt, France.

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