# Impact of chronic prurigo nodularis on daily life and stigmatization

Laurent Misery, Christine Patras de Campaigno, Charles Taieb, Claire Thénié, Cedric Meyer, Adrien Marquié, Carle Paul, Marie Tauber

► To cite this version:

Laurent Misery, Christine Patras de Campaigno, Charles Taieb, Claire Thénié, Cedric Meyer, et al. Impact of chronic prurigo nodularis on daily life and stigmatization. Journal of the European Academy of Dermatology and Venereology, 2023, 37 (7), pp.e908-e909. 10.1111/jdv.19013 . hal-04338803

HAL Id: hal-04338803

https://hal.science/hal-04338803

Submitted on 29 May 2024

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# Impact of chronic prurigo nodularis on daily life and stigmatization

Laurent Misery, Christine Patras de Campaigno, Charles Taieb, Claire Thénié, Cedric Meyer, Adrien Marquié, Carle Paul, Marie Tauber

► To cite this version:

Laurent Misery, Christine Patras de Campaigno, Charles Taieb, Claire Thénié, Cedric Meyer, et al. Impact of chronic prurigo nodularis on daily life and stigmatization. Journal of the European Academy of Dermatology and Venereology, 2023, 37 (7), pp.e908-e909. 10.1111/jdv.19013. hal-04338803

HAL Id: hal-04338803

https://hal.science/hal-04338803v1

Submitted on 29 May 2024

HAL is a multi-disciplinary open access
archive for the deposit and dissemination of sci-
entific research documents, whether they are pub-
lished or not. The documents may come from
teaching and research institutions in France or
abroad, or from public or private research centers.

L'archive ouverte pluridisciplinaire HAL, est
destinée au dépôt et à la diffusion de documents
scientifiques de niveau recherche, publiés ou non,
émanant des établissements d'enseignement et de
recherche français ou étrangers, des laboratoires
publics ou privés.

<figure><img src="image_1.png" /></figure>

Distributed under a Creative Commons Attribution 4.0 International License
## LETTER TO THE EDITOR

# Impact of chronic prurigo nodularis on daily life and stigmatization

Dear Editor,

Chronic prurigo nodularis (CP) is a disease with a severe impact on quality of life.¹ We were interested in its impact on daily life and stigmatization.

A self-administered questionnaire was distributed to members of the French patient advocacy group *Association France Prurigo Nodulaire* and to outpatients with CP from 2 departments of dermatology. Validated tools were used: Dermatology Life Quality Index (DLQI; score from 0 to 30),² Patient Unique Stigmatization Holistic tool in Dermatology (PUSH-D; score from 0 to 88),³ EuroQol-5 Dimensions-3 Levels (EQ-5D-3L) utilities (score from -1 to 1) and visual analogic scale (VAS; from 0 to 100)⁴ and Epworth sleepiness scale (score from 0 to 24).⁵

Seventy patients were recruited, mostly women (n = 43, 61.4%). The mean age was 46.7 years (±16.2). The diagnosis of CP was confirmed by a dermatologist for 95% of the patients. The average delay between the first symptoms (pruritus, nodules) and the diagnosis was 24.2 months (±35.6; minimum: 1 month, maximum: 180 months). While 62% of the patients did not declare any other skin disease, 24.3% (n = 17) declared that they also had atopic dermatitis.

Notably, 38.6% of the patients were partially satisfied and 24.3% totally satisfied with the overall management of their PN; 62.9% wanted more effective treatment and 31.4% a better quality of life.

The average DLQI score was 13.3 (±7.0; from 1 to 29), higher in women (15.5) than in men (10.5) (p < 0.01) and 74.3% of the patients had a score above 10. The Epworth scale (mean: 9.1 ± 4.5; from 0 to 21) showed that 44.3% of the patients had a very disturbed sleep (score ≥ 10). Using the EQ-5D VAS mean score, indicating the general health status, was 48.5/100 (±20.6; from 10 to 98). The PUSH score was 25.2 (±14.1; from 0 to 68). Spearman's correlations showed a significant negative correlation between the DLQI and the EQ-5D VAS (r = -0.56807/p < 0.0001), the EQ-5D utility index (r = -0.44298/p = 0.0001) and a significant positive correlation with the PUSH stigma score (r = 0.58560/p < 0.0001).

In the last 3 months, 21.4% missed at least 1 day of work, learning, training, school or university; 72.9% gave up a leisure or sport activity; 62.9% refused an invitation to a dinner or a party because of their CP. Comparisons between patients with mild disease according to DLQI score (<7) or moderate-to-severe disease (≥7) are given in Table 1.

This study shows that the daily life of patients with CP is deeply modified by this disease, with consequences on sleep, leisures and work. These consequences are more important if the general health status and the quality of life (according to DLQI score) are more altered and the stigmatization is higher.

<table><caption>TABLE 1 Association between quality of life and stigma, general health status, impact on daily life and sleep.</caption><thead><tr><th rowspan="2">Impact on activities</th><th colspan="2">Mild disease (DLQI&lt;7)</th><th colspan="2">Moderate-to-severe disease (DLQI≥7)</th><th rowspan="2">p</th></tr><tr><th>N</th><th>%</th><th>N</th><th>%</th></tr></thead><tbody><tr><td>Absenteeism</td><td>0</td><td>0</td><td>15</td><td>28.85</td><td>0.01</td></tr><tr><td>Refusing an activity</td><td>3</td><td>16.67</td><td>48</td><td>92.31</td><td>&lt;0.0001</td></tr><tr><td>Refusing an invitation</td><td>1</td><td>5.56</td><td>43</td><td>82.69</td><td>&lt;0.0001</td></tr><tr><th>Scores</th><th>N</th><th>Mean</th><th>SD</th><th>N</th><th>Mean</th><th>SD</th><th>p</th></tr><tr><td>Epworth</td><td>18</td><td>8.33</td><td>5.18</td><td>52</td><td>9.33</td><td>4.28</td><td>NS</td></tr><tr><td>EQ-5D utility</td><td>18</td><td>0.78</td><td>0.24</td><td>52</td><td>0.43</td><td>0.32</td><td>&lt;0.0001</td></tr><tr><td>EQ-5D_VAS</td><td>18</td><td>69.28</td><td>16.81</td><td>52</td><td>41.37</td><td>16.59</td><td>&lt;0.0001</td></tr><tr><td>PUSH</td><td>17<sup>a</sup></td><td>8.18</td><td>9.81</td><td>51<sup>a</sup></td><td>30.90</td><td>10.13</td><td>&lt;0.0001</td></tr></tbody></table>

This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.

© 2023 The Authors. *Journal of the European Academy of Dermatology and Venereology* published by John Wiley & Sons Ltd on behalf of European Academy of Dermatology and Venereology.

<footnote>aTwo patients (one in each group) did not answer the questionnaire.</footnote>
## LETTER TO THE EDITOR

# Impact of chronic prurigo nodularis on daily life and stigmatization

Dear Editor,

Chronic prurigo nodularis (CP) is a disease with a severe impact on quality of life.¹ We were interested in its impact on daily life and stigmatization.

A self-administered questionnaire was distributed to members of the French patient advocacy group *Association France Prurigo Nodulaire* and to outpatients with CP from 2 departments of dermatology. Validated tools were used: Dermatology Life Quality Index (DLQI; score from 0 to 30),² Patient Unique Stigmatization Holistic tool in Dermatology (PUSH-D; score from 0 to 88),³ EuroQol-5 Dimensions-3 Levels (EQ-5D-3L) utilities (score from -1 to 1) and visual analogic scale (VAS; from 0 to 100)⁴ and Epworth sleepiness scale (score from 0 to 24).⁵

Seventy patients were recruited, mostly women (n = 43, 61.4%). The mean age was 46.7 years (±16.2). The diagnosis of CP was confirmed by a dermatologist for 95% of the patients. The average delay between the first symptoms (pruritus, nodules) and the diagnosis was 24.2 months (±35.6; minimum: 1 month, maximum: 180 months). While 62% of the patients did not declare any other skin disease, 24.3% (n = 17) declared that they also had atopic dermatitis.

Notably, 38.6% of the patients were partially satisfied and 24.3% totally satisfied with the overall management of their PN; 62.9% wanted more effective treatment and 31.4% a better quality of life.

The average DLQI score was 13.3 (±7.0; from 1 to 29), higher in women (15.5) than in men (10.5) (p < 0.01) and 74.3% of the patients had a score above 10. The Epworth scale (mean: 9.1 ± 4.5; from 0 to 21) showed that 44.3% of the patients had a very disturbed sleep (score ≥ 10). Using the EQ-5D VAS mean score, indicating the general health status, was 48.5/100 (±20.6; from 10 to 98). The PUSH score was 25.2 (±14.1; from 0 to 68). Spearman's correlations showed a significant negative correlation between the DLQI and the EQ-5D VAS (r = -0.56807/p < 0.0001), the EQ-5D utility index (r = -0.44298/p = 0.0001) and a significant positive correlation with the PUSH stigma score (r = 0.58560/p < 0.0001).

In the last 3 months, 21.4% missed at least 1 day of work, learning, training, school or university; 72.9% gave up a leisure or sport activity; 62.9% refused an invitation to a dinner or a party because of their CP. Comparisons between patients with mild disease according to DLQI score (<7) or moderate-to-severe disease (≥7) are given in Table 1.

This study shows that the daily life of patients with CP is deeply modified by this disease, with consequences on sleep, leisures and work. These consequences are more important if the general health status and the quality of life (according to DLQI score) are more altered and the stigmatization is higher.

<table><caption>TABLE 1 Association between quality of life and stigma, general health status, impact on daily life and sleep.</caption><thead><tr><th rowspan="2">Impact on activities</th><th colspan="2">Mild disease (DLQI&lt;7)</th><th colspan="2">Moderate-to-severe disease (DLQI≥7)</th><th rowspan="2">p</th></tr><tr><th>N</th><th>%</th><th>N</th><th>%</th></tr></thead><tbody><tr><td>Absenteeism</td><td>0</td><td>0</td><td>15</td><td>28.85</td><td>0.01</td></tr><tr><td>Refusing an activity</td><td>3</td><td>16.67</td><td>48</td><td>92.31</td><td>&lt;0.0001</td></tr><tr><td>Refusing an invitation</td><td>1</td><td>5.56</td><td>43</td><td>82.69</td><td>&lt;0.0001</td></tr><tr><th>Scores</th><th>N</th><th>Mean</th><th>SD</th><th>N</th><th>Mean</th><th>SD</th><th>p</th></tr><tr><td>Epworth</td><td>18</td><td>8.33</td><td>5.18</td><td>52</td><td>9.33</td><td>4.28</td><td>NS</td></tr><tr><td>EQ-5D utility</td><td>18</td><td>0.78</td><td>0.24</td><td>52</td><td>0.43</td><td>0.32</td><td>&lt;0.0001</td></tr><tr><td>EQ-5D_VAS</td><td>18</td><td>69.28</td><td>16.81</td><td>52</td><td>41.37</td><td>16.59</td><td>&lt;0.0001</td></tr><tr><td>PUSH</td><td>17<sup>a</sup></td><td>8.18</td><td>9.81</td><td>51<sup>a</sup></td><td>30.90</td><td>10.13</td><td>&lt;0.0001</td></tr></tbody></table>

This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.

© 2023 The Authors. *Journal of the European Academy of Dermatology and Venereology* published by John Wiley & Sons Ltd on behalf of European Academy of Dermatology and Venereology.

<footnote>aTwo patients (one in each group) did not answer the questionnaire.</footnote>
A recent meta-analysis showed that the most common quality of life instrument used in CP was the DLQI.<fnref n="6" /> Our results suggest that PUSH-D, DLQI, EQ-5D and Epworth tools are also relevant for measuring the consequences of CP. In our study, we used for the first time after its validation the newly developed PUSH-D.<fnref n="3" />

To our knowledge, there is only another study showing that stigmatization levels were high in CP⁷ but this study was focused on body dysmorphia and stigmatization was only a covariate in multivariate models and was not analysed in the single diseases. The authors showed that feelings of stigmatization were significantly related to body dismorphic disorder symptoms using the Perceived Stigmatization Questionnaire.⁷

## ACKNOWLEDGEMENTS

We would like to thank all patients for their participation.

## FUNDING INFORMATION

Sanofi.

## CONFLICT OF INTEREST STATEMENT

None.

## DATA AVAILABILITY STATEMENT

All data are available on demand.

## ETHICS STATEMENT

The study complied with local legal requirements study and received approval from ethics committee (CPP Ile-de-France VII; N°2020-A01620-39 /20-075). All patients confirmed their non-objection to the anonymised use of their personal data in this study.

Laurent Misery<fnref n="1" /> ID

Christine Patras de Campaigno<fnref n="2" />

Charles Taieb<fnref n="3" /> ID

Claire Thénié<fnref n="4" />

Cedric Meyer<fnref n="4" />

Adrien Marquié<fnref n="5" />

Carle Paul<fnref n="6" /> ID

Marie Tauber<fnref n="6" /> ID

## Correspondence

Laurent Misery, Department of Dermatology, University Hospital of Brest, Brest, France.

Email: laurent.misery@chu-brest.fr

## ORCID

Laurent Misery ID https://orcid.org/0000-0001-8088-7059

Charles Taieb ID https://orcid.org/0000-0002-5142-2479

Carle Paul ID https://orcid.org/0000-0003-0165-5263

Marie Tauber ID https://orcid.org/0000-0001-6245-7442

## REFERENCES

1. Misery L. Chronic prurigo. Br J Dermatol. 2022;187:464-71.

2. Finlay AY, Khan GK. Dermatology life quality index (DLQI)-a simple practical measure for routine clinical use. Clin Exp Dermatol. 1994;19:210-6.

3. Ezzedine K, Paul C, Bergqvist C, Misery L, Chuberre B, Halioua B, et al. Patient unique stigmatization holistic tool in dermatology (PUSH-D): development and validation of a dermatology-specific stigmatization assessment tool. J Eur Acad Dermatol Venereol. 2023;37:443-50.

4. Pickard AS, Kohlmann T, Janssen MF, Bonsel G, Rosenbloom S, Cella D. Evaluating equivalency between response systems: application of the Rasch model to a 3-level and 5-level EQ-5D. Med Care. 2007;45:812-9.

5. Johns MW. A new method for measuring daytime sleepiness: the Epworth sleepiness scale. Sleep. 1991;14:540-5.

6. Janmohamed SR, Gwillim EC, Yousaf M, Patel KR, Silverberg JI. The impact of prurigo nodularis on quality of life: a systematic review and meta-analysis. Arch Dermatol Res. 2021;313:669-377.

7. Schut C, Dalgard FJ, Bewley A, Evers AWM, Gieler U, Lien L, et al. Body dysmorphia in common skin diseases: results of an observational, cross-sectional multicentre study among dermatological outpatients in 17 European countries. Br J Dermatol. 2022;187:115-25.

<footnote n="1">¹Department of Dermatology, University Hospital of Brest, Brest, France</footnote>

<footnote n="2">²Association France Prurigo Nodulaire, Agen, France</footnote>

<footnote n="3">³EMMA, Fontenay-sous-Bois, France</footnote>

<footnote n="4">⁴Sanofi, Medical Direction, Gentilly, France</footnote>

<footnote n="5">⁵Statistician, Paris, France</footnote>

<footnote n="6">⁶Department of dermatology, University Hospital of Toulouse, Toulouse, France</footnote>
A recent meta-analysis showed that the most common quality of life instrument used in CP was the DLQI.<fnref n="6" /> Our results suggest that PUSH-D, DLQI, EQ-5D and Epworth tools are also relevant for measuring the consequences of CP. In our study, we used for the first time after its validation the newly developed PUSH-D.<fnref n="3" />

To our knowledge, there is only another study showing that stigmatization levels were high in CP⁷ but this study was focused on body dysmorphia and stigmatization was only a covariate in multivariate models and was not analysed in the single diseases. The authors showed that feelings of stigmatization were significantly related to body dismorphic disorder symptoms using the Perceived Stigmatization Questionnaire.⁷

## ACKNOWLEDGEMENTS

We would like to thank all patients for their participation.

## FUNDING INFORMATION

Sanofi.

## CONFLICT OF INTEREST STATEMENT

None.

## DATA AVAILABILITY STATEMENT

All data are available on demand.

## ETHICS STATEMENT

The study complied with local legal requirements study and received approval from ethics committee (CPP Ile-de-France VII; N°2020-A01620-39 /20-075). All patients confirmed their non-objection to the anonymised use of their personal data in this study.

Laurent Misery<fnref n="1" /> ID

Christine Patras de Campaigno<fnref n="2" />

Charles Taieb<fnref n="3" /> ID

Claire Thénié<fnref n="4" />

Cedric Meyer<fnref n="4" />

Adrien Marquié<fnref n="5" />

Carle Paul<fnref n="6" /> ID

Marie Tauber<fnref n="6" /> ID

## Correspondence

Laurent Misery, Department of Dermatology, University Hospital of Brest, Brest, France.

Email: laurent.misery@chu-brest.fr

## ORCID

Laurent Misery ID https://orcid.org/0000-0001-8088-7059

Charles Taieb ID https://orcid.org/0000-0002-5142-2479

Carle Paul ID https://orcid.org/0000-0003-0165-5263

Marie Tauber ID https://orcid.org/0000-0001-6245-7442

## REFERENCES

1. Misery L. Chronic prurigo. Br J Dermatol. 2022;187:464-71.

2. Finlay AY, Khan GK. Dermatology life quality index (DLQI)-a simple practical measure for routine clinical use. Clin Exp Dermatol. 1994;19:210-6.

3. Ezzedine K, Paul C, Bergqvist C, Misery L, Chuberre B, Halioua B, et al. Patient unique stigmatization holistic tool in dermatology (PUSH-D): development and validation of a dermatology-specific stigmatization assessment tool. J Eur Acad Dermatol Venereol. 2023;37:443-50.

4. Pickard AS, Kohlmann T, Janssen MF, Bonsel G, Rosenbloom S, Cella D. Evaluating equivalency between response systems: application of the Rasch model to a 3-level and 5-level EQ-5D. Med Care. 2007;45:812-9.

5. Johns MW. A new method for measuring daytime sleepiness: the Epworth sleepiness scale. Sleep. 1991;14:540-5.

6. Janmohamed SR, Gwillim EC, Yousaf M, Patel KR, Silverberg JI. The impact of prurigo nodularis on quality of life: a systematic review and meta-analysis. Arch Dermatol Res. 2021;313:669-377.

7. Schut C, Dalgard FJ, Bewley A, Evers AWM, Gieler U, Lien L, et al. Body dysmorphia in common skin diseases: results of an observational, cross-sectional multicentre study among dermatological outpatients in 17 European countries. Br J Dermatol. 2022;187:115-25.

<footnote n="1">¹Department of Dermatology, University Hospital of Brest, Brest, France</footnote>

<footnote n="2">²Association France Prurigo Nodulaire, Agen, France</footnote>

<footnote n="3">³EMMA, Fontenay-sous-Bois, France</footnote>

<footnote n="4">⁴Sanofi, Medical Direction, Gentilly, France</footnote>

<footnote n="5">⁵Statistician, Paris, France</footnote>

<footnote n="6">⁶Department of dermatology, University Hospital of Toulouse, Toulouse, France</footnote>