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Patient Perspectives on Living With Severe Prurigo Nodularis

IMPORTANCE: Because of a paucity of qualitative research on prurigo nodularis (PN), the symptoms and impacts of PN that are most important to patients are poorly understood. OBJECTIVE: To explore patients’ perspectives on their PN symptoms and to understand the impacts of the condition. DESIGN, SETT...

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Autores principales: Rodriguez, Danielle, Kwatra, Shawn G., Dias-Barbosa, Carla, Zeng, Fanyang, Jabbar Lopez, Zarif K., Piketty, Christophe, Puelles, Jorge
Formato: Online Artículo Texto
Lenguaje:English
Publicado: American Medical Association 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10512162/
https://www.ncbi.nlm.nih.gov/pubmed/37728897
http://dx.doi.org/10.1001/jamadermatol.2023.3251
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author Rodriguez, Danielle
Kwatra, Shawn G.
Dias-Barbosa, Carla
Zeng, Fanyang
Jabbar Lopez, Zarif K.
Piketty, Christophe
Puelles, Jorge
author_facet Rodriguez, Danielle
Kwatra, Shawn G.
Dias-Barbosa, Carla
Zeng, Fanyang
Jabbar Lopez, Zarif K.
Piketty, Christophe
Puelles, Jorge
author_sort Rodriguez, Danielle
collection PubMed
description IMPORTANCE: Because of a paucity of qualitative research on prurigo nodularis (PN), the symptoms and impacts of PN that are most important to patients are poorly understood. OBJECTIVE: To explore patients’ perspectives on their PN symptoms and to understand the impacts of the condition. DESIGN, SETTING, AND PARTICIPANTS: One-on-one qualitative telephone interviews were held with English-speaking US adults aged 18 years or older with a confirmed diagnosis of PN, severe pruritus, and moderate to severe sleep disturbance. Participants were recruited via patient associations, patient panels, and social media posts. Interviews took place between September 10, 2020, and March 16, 2021. MAIN OUTCOMES AND MEASURES: The main symptoms of PN and their impacts on quality of life were identified by content analysis of deidentified interview transcripts. RESULTS: A total of 21 adults with PN (mean [SD] age, 53.1 [11.8] years; 15 [71%] female; 2 African American or Black patients [10%], 1 Asian patient [5%], and 18 White patients [86%]; of these, 1 patient [ 5%] had Hispanic or Latino ethnicity) participated in the interviews. All participants reported itch, pain associated with PN, bleeding or scabbing, and dry skin. Other frequently reported symptoms included lumps or bumps (95%), having a crust on the skin (95%), burning (90%), stinging (90%), lesions or sores (86%), skin discoloration (86%), and raw skin (81%). Of the 17 participants who indicated what their worst symptoms were, 15 (88%) identified itching as the worst or 1 of the worst symptoms. The most frequently reported impacts of PN for quality of life were changes in sleep (100%), daily life (100%), feelings or mood (95%), relationships (95%), social life (81%), and work or school (71%). Overall, the worst impact of PN was its association with impaired feelings or mood. CONCLUSIONS AND RELEVANCE: This qualitative study suggests the importance of itching, sleep disturbance, and other symptoms and impacts of PN. This information can be used to guide end point selection in clinical trials and to inform patient-centric decision-making in clinical practice.
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spelling pubmed-105121622023-09-22 Patient Perspectives on Living With Severe Prurigo Nodularis Rodriguez, Danielle Kwatra, Shawn G. Dias-Barbosa, Carla Zeng, Fanyang Jabbar Lopez, Zarif K. Piketty, Christophe Puelles, Jorge JAMA Dermatol Original Investigation IMPORTANCE: Because of a paucity of qualitative research on prurigo nodularis (PN), the symptoms and impacts of PN that are most important to patients are poorly understood. OBJECTIVE: To explore patients’ perspectives on their PN symptoms and to understand the impacts of the condition. DESIGN, SETTING, AND PARTICIPANTS: One-on-one qualitative telephone interviews were held with English-speaking US adults aged 18 years or older with a confirmed diagnosis of PN, severe pruritus, and moderate to severe sleep disturbance. Participants were recruited via patient associations, patient panels, and social media posts. Interviews took place between September 10, 2020, and March 16, 2021. MAIN OUTCOMES AND MEASURES: The main symptoms of PN and their impacts on quality of life were identified by content analysis of deidentified interview transcripts. RESULTS: A total of 21 adults with PN (mean [SD] age, 53.1 [11.8] years; 15 [71%] female; 2 African American or Black patients [10%], 1 Asian patient [5%], and 18 White patients [86%]; of these, 1 patient [ 5%] had Hispanic or Latino ethnicity) participated in the interviews. All participants reported itch, pain associated with PN, bleeding or scabbing, and dry skin. Other frequently reported symptoms included lumps or bumps (95%), having a crust on the skin (95%), burning (90%), stinging (90%), lesions or sores (86%), skin discoloration (86%), and raw skin (81%). Of the 17 participants who indicated what their worst symptoms were, 15 (88%) identified itching as the worst or 1 of the worst symptoms. The most frequently reported impacts of PN for quality of life were changes in sleep (100%), daily life (100%), feelings or mood (95%), relationships (95%), social life (81%), and work or school (71%). Overall, the worst impact of PN was its association with impaired feelings or mood. CONCLUSIONS AND RELEVANCE: This qualitative study suggests the importance of itching, sleep disturbance, and other symptoms and impacts of PN. This information can be used to guide end point selection in clinical trials and to inform patient-centric decision-making in clinical practice. American Medical Association 2023-09-20 2023-11 /pmc/articles/PMC10512162/ /pubmed/37728897 http://dx.doi.org/10.1001/jamadermatol.2023.3251 Text en Copyright 2023 Rodriguez D et al. JAMA Dermatology. https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article distributed under the terms of the CC-BY-NC-ND License.
spellingShingle Original Investigation
Rodriguez, Danielle
Kwatra, Shawn G.
Dias-Barbosa, Carla
Zeng, Fanyang
Jabbar Lopez, Zarif K.
Piketty, Christophe
Puelles, Jorge
Patient Perspectives on Living With Severe Prurigo Nodularis
title Patient Perspectives on Living With Severe Prurigo Nodularis
title_full Patient Perspectives on Living With Severe Prurigo Nodularis
title_fullStr Patient Perspectives on Living With Severe Prurigo Nodularis
title_full_unstemmed Patient Perspectives on Living With Severe Prurigo Nodularis
title_short Patient Perspectives on Living With Severe Prurigo Nodularis
title_sort patient perspectives on living with severe prurigo nodularis
topic Original Investigation
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10512162/
https://www.ncbi.nlm.nih.gov/pubmed/37728897
http://dx.doi.org/10.1001/jamadermatol.2023.3251
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