key: cord-0802606-5okc6wzb
authors: Armstrong, April; Bohannan, Barbra; Mburu, Sicily; Alarcon, Ivette; Kasparek, Torben; Toumi, Jihen; Frade, Susan; Barrio, Silvia Fernandez; Augustin, Matthias
title: Impact of Psoriatic Disease on Quality of Life: Interim Results of a Global Survey
date: 2022-03-14
journal: Dermatol Ther (Heidelb)
DOI: 10.1007/s13555-022-00695-0
sha: 50b15badfb41f8b5a7e8a497e46f075f0bbe2ed3
doc_id: 802606
cord_uid: 5okc6wzb

INTRODUCTION: Psoriatic disease (PsD) is a chronic systemic disorder affecting numerous body areas, including skin and joints. Patients’ perspectives regarding understanding their disease and dialogue with healthcare professionals (HCPs) on treatment strategies is becoming increasingly important in the holistic management of PsD. The study aim was to determine patients’ understanding of the systemic nature of psoriasis and psoriatic arthritis (PsA) and the associated burden of living with these diseases. The relationship between patient and HCP was also evaluated. METHODS: Psoriasis and Beyond: The Global Psoriatic Disease Survey was a cross-sectional, quantitative online survey, conducted in patients with moderate to severe plaque psoriasis with or without concomitant PsA. Here, we report interim analysis results. RESULTS: A total of 1678 respondents from 11 countries were included. Overall, 31% of patients with psoriasis reported concomitant PsA, 80% of whom considered their PsA severity as moderately or highly active. In total, 63% of patients had heard the term “psoriatic disease”. Few patients were aware of psoriasis manifestations (PsA, 29%; axial symptoms, 18%) or comorbidities (obesity, 21%; cardiovascular disease, 18%). Among patients with psoriasis and concomitant PsA, 70% reported swollen and tender joints, especially of the finger(s) and/or toe(s). Most patients (84%) experienced stigma and discrimination and reported a negative impact of their disease on work, emotions, and relationships. Overall, 42% of patients had never discussed treatment goals with their HCP. Patients who were dissatisfied with their current treatment (psoriasis, 15%; psoriasis with PsA, 14%) reported incomplete relief of skin symptoms (57%) and joint symptoms (45%) as primary reasons for dissatisfaction. CONCLUSIONS: Despite many patients having heard the term “psoriatic disease”, the majority were unaware of the systemic nature and increased risk of comorbidities associated with PsD. This interim analysis highlights the need for patient education, productive patient–HCP dialogue, and shared decision-making in optimal disease management. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s13555-022-00695-0.

increasingly important in the holistic management of PsD. The study aim was to determine patients' understanding of the systemic nature of psoriasis and psoriatic arthritis (PsA) and the associated burden of living with these diseases. The relationship between patient and HCP was also evaluated. Methods: Psoriasis and Beyond: The Global Psoriatic Disease Survey was a cross-sectional, quantitative online survey, conducted in patients with moderate to severe plaque psoriasis with or without concomitant PsA. Here, we report interim analysis results. Results: A total of 1678 respondents from 11 countries were included. Overall, 31% of patients with psoriasis reported concomitant PsA, 80% of whom considered their PsA severity as moderately or highly active. In total, 63% of patients had heard the term ''psoriatic disease''. Few patients were aware of psoriasis manifestations (PsA, 29%; axial symptoms, 18%) or comorbidities (obesity, 21%; cardiovascular disease, 18%). Among patients with psoriasis and concomitant PsA, 70% reported swollen and tender joints, especially of the finger(s) and/or toe(s). Most patients (84%) experienced stigma and discrimination and reported a negative impact of their disease on work, emotions, and relationships. Overall, 42% of patients had never discussed treatment goals with their HCP. Patients who were dissatisfied with their current treatment (psoriasis, 15%; psoriasis with PsA, 14%) reported incomplete relief of skin symptoms (57%) and joint symptoms (45%) as primary reasons for dissatisfaction. Conclusions: Despite many patients having heard the term ''psoriatic disease'', the majority were unaware of the systemic nature and increased risk of comorbidities associated with PsD. This interim analysis highlights the need for patient education, productive patient-HCP dialogue, and shared decision-making in optimal disease management. Psoriatic disease is the overarching term used to describe the many manifestations of psoriasis, including psoriatic arthritis and the associated systemic comorbidities.

Psoriasis and Beyond: The Global Psoriatic Disease Survey was conducted among patients with moderate to severe plaque psoriasis with/without psoriatic arthritis to assess patients' understanding of the systemic nature of psoriasis, psoriatic arthritis, and the associated burden of living with these systemic diseases.

What was learned from the study?

The interim results of this study demonstrated that despite many patients having heard the term ''psoriatic disease'', the majority of patients were unaware of the systemic nature and increased risk of comorbidities associated with psoriatic disease. Further, psoriatic disease had a substantial negative impact on physical appearance, work, quality of life, emotions, and personal relationships.

On average, the confirmed diagnosis of psoriasis and psoriatic arthritis after first symptom was delayed by 2-3 and 2 years, respectively. Furthermore, many patients with psoriasis were found to be at risk of having psoriatic arthritis.

This interim analysis highlights the need for patient education, productive dialogue, and shared decision-making between patients and healthcare practitioners for optimal management of psoriatic disease.

Psoriatic disease (PsD) is a systemic inflammatory disorder involving several manifestations of the skin, its appendages, and joints [1] . Despite advances in the treatment of psoriasis (PsO) and the various manifestations of PsD, medical unmet needs remain, including diagnostic delays and undertreatment [2] [3] [4] .

There has been increased emphasis on understanding patients' perspective, with a recent report indicating that patients feel empowered when they have a broader understanding of their disease and treatment options [5] .

Psoriasis and Beyond: The Global Psoriatic Disease Survey was designed to assess patients' understanding of the systemic nature of PsO and psoriatic arthritis (PsA), and the burden of living with these conditions. This survey also evaluated the relationship between patients and healthcare professionals (HCPs). Herein, we describe the interim survey results in patients with moderate to severe plaque PsO, and PsO with concomitant PsA (PsO-PsA).

The survey is a joint research initiative among the International Federation of Psoriasis Associations (IFPA), dermatology experts, and Novartis. This cross-sectional, quantitative online survey was conducted among patients (aged 18 years or more) from 20 countries across Asia, Australia, Europe, and North/South America with a self-reported diagnosis of moderate to severe plaque PsO or PsO-PsA. Criteria for participation included having a body surface area (BSA) of greater than 5 to less than 10 (moderate to severe) affecting sensitive and/or prominent body parts (face, palms, hands, fingers, genitals, soles of feet, or nails) or BSA of 10 or more (severe), when a patient's PsO was at its worst. Patients were recruited through online panels (agency or self-registered) by Institut de Publique Sondage d'Opinion Secteur (Ipsos SA) and patient advocacy groups (organized and coordinated by Novartis/IFPA). Primary data was collected following an eligibility assessment through a 5-min screener and subsequent 25-min online survey. The questionnaire consisted of a combination of validated tools such as the Dermatology Life Quality Index (DLQI), Work Productivity and Activity Index (WPAI), and the Psoriasis Epidemiology Screening Tool (PEST). All questions not included in the validated questionnaires were reviewed by the steering committee for appropriateness.

The primary objective of this survey was to assess patients' understanding of PsO/PsA as part of systemic diseases, and the humanistic and physical burdens of living with these conditions. Secondary objectives included assessing patients' attitudes to their relationships with HCPs, understanding the patient journey through the healthcare system, and assessing patients' perceptions on treatment expectations and satisfaction.

Analyses involved descriptive statistics and were performed by Ipsos SA.

Informed digital consent was obtained from patients before survey participation. Where required, this study was reviewed and approved by local ethics committees/institutional review boards, according to local laws and regulations. This study was performed in accordance with the Declaration of Helsinki of 1964 and its later amendments. No personally identifiable information was collected in this study.

Interim results involved 1678 responses (mean age 40.1 years; 52% women) from 11 countries (data collection November 2020-May 2021). At the time of the survey, 63% and 37% of patients reported having, at worst, moderate (BSA [ 5 to \ 10) and severe (BSA C 10) PsO, respectively. Overall, 31% of patients with PsO reported concomitant PsA; 80% of patients with PsO-PsA had moderately or highly active PsA. The most commonly diagnosed comorbidities were anxiety (31%), depression (27%), chronic gastrointestinal diseases (26%), and obesity (25%).

Overall, 63% had previously heard the term ''psoriatic disease''. Related to manifestations, only 29% of patients with PsO had heard about PsA and 18% about axial symptoms related to PsO (Fig. 1i) . Few patients were aware of PsOassociated comorbidities (Fig. 1ii) .

At survey sampling, 57%, 26%, and 17% of patients reported currently having mild (BSA \ 5), moderate, and severe PsO, respectively. Currently, patients described their scalp (57%), legs (56%), face (34%), genitals (19%), soles of feet (17%), palms (16%), and nails (15%) as the most affected body areas. In patients with PsO-PsA (n = 517), swollen and tender joints, especially in the finger(s) and/or toe(s), were the most commonly experienced symptoms (70%), followed by heel pain (46%), morning stiffness (45%), and swelling on the back of the leg, above the heel (45%).

PEST, a validated questionnaire used to identify early signs/symptoms of PsA [6] , was employed in this survey. Among all patients with PsO without a PsA diagnosis completing the PEST questionnaire (n = 1161), 68% screened positive, indicative of a potential PsA presence. Among patients experiencing any joint symptoms during the previous year, 69% reported asking their HCP about them.

Disease Burden and Impact on Quality of Life DLQI tool ranges [7] were used to evaluate the impact of PsO on quality of life (QoL). Over half of all patients (54%) reported a ''very large'' (DLQI scores 11-20) to ''extremely large'' (DLQI scores 21-30) impact on their QoL while only 28% indicated either ''no impact'' (DLQI score 0-1) or a ''small impact'' (DLQI scores 2-5).

One-third of all patients felt ashamed of their skin (35%) or body (30%) (Fig. S1 in the Fig. 1 Proportion of patients aware of the manifestations related to psoriatic disease (i) and associated comorbidities (ii). *Question addressed to patients with psoriasis only supplementary material). Most patients experienced stigma and discrimination (84%) and an impact on their past or current relationships with their partners (82%) (Fig. S1) .

Using the WPAI, on average, patients reported a moderate impact of their health on daily activities. Overall, 35% of all patients could not work/study the week prior to the survey as a result of their skin problems. Overall, 14% reported that their work/career choice was influenced by their disease. The main coping mechanisms for patients were talking with family and friends, engaging with social media and exercise/sport, and finding comfort in food.

Less than half (47%) of patients with PsO-PsA (n = 517) were being managed by rheumatologists (Fig. S2 in the supplementary material) . Overall, 42% never discussed treatment goals with their HCPs, 44% decided together, and for 13% the HCP made this decision. HCPs and patients' treatment goals are provided in Fig. 2i and ii, respectively.

The mean time between symptom onset and confirmed medical diagnosis was 2.6 years for patients with PsO and 1.8 years for patients with PsO-PsA. Overall, 47% of patients with PsO were currently being treated with biologic therapy (Fig. 3i ). For patients with PsO-PsA, 56% and 52% were receiving biologics and nonsteroidal anti-inflammatory drugs, respectively (Fig. 3ii) . Patients with PsO and PsO-PsA received 2-3 biologics since initiating treatment. Patients with PsO-PsA also received 2-3 disease-modifying antirheumatic drugs. Overall, 55% of patients with PsO could not recognize any change in their skin symptoms with their current treatment. Almost half of patients with PsO-PsA (46%) reported that their current treatment achieved an improvement in their condition.

The COVID-19 pandemic impacted current PsO and PsA treatment by 54% and 61%, respectively. Almost one-third of patients with PsO and PsO-PsA reported treatment discontinuation and difficulty in getting prescriptions because of COVID-19 (Fig. 3iii) .

Patients with PsO (n = 1626) and PsO-PsA (n = 500) reported similar degrees of dissatisfaction with current treatment (15% and 14%, respectively). Prime reasons for dissatisfaction (Fig. 3iv) were incomplete relief of skin (57%) and joint (45%) symptoms and no improvement in overall QoL (45%).

These interim global survey results revealed that, although many patients with moderate to severe PsO with or without concomitant PsA had previously heard the term ''psoriatic disease'', they were predominantly unaware of the systemic nature of PsD and risk of associated comorbidities. On the basis of recent guidelines, HCPs recognize the need to address this systemic nature [8] [9] [10] [11] . Increasing awareness of the systemic nature of PsO may improve a patient's understanding that there is more to PsO than skin symptoms [12] . Patients should be made aware of the relationship between the risk of PsO-associated comorbidities and lifestyle choices, such as alcohol and smoking [8, 9, 13, 14] .

PsD had a negative impact on physical appearance, work, QoL, emotions, and relationships which may lead to psychological issues; patient counseling can help alleviate such issues [5] . The survey findings highlight that active involvement of the patient in setting treatment goals is required as both the patient and HCPs need to communicate openly about their objectives.

Facial PsO was reported by 34% of patients which was similar to results from a large Danish study (* 30%) [15] . The same study termed scalp, face, nails, soles, genitals, and palms as hard-to-treat areas, even in patients with mild PsO, which remains a treatment challenge [15] . The study findings suggests that gaps exist in screening for PsA by dermatologists. Such screening can facilitate early diagnosis and treatment of PsA, preventing irreversible joint damage. Our results show that a considerable proportion of patients with PsO had previously undetected joint symptoms. Furthermore, early diagnosis of both PsO and PsA is pertinent in effective treatment and management of the disease [4] , as a substantial delay was reported by patients between symptom onset and the confirmed diagnosis of PsO/PsA. Patient education with a focus on monitoring joints for early detection of PsA may enable early access to treatments [16] .

These results demonstrated that less than half of patients with PsA were treated by a rheumatologist. This may lead to disease mismanagement, with patients treated by nonspecialists.

As this survey is based on patients' perspective, it is limited by inaccurate information recall, misinterpretation of questions, and varying understanding of the disease. The survey format did not consider differences in demographics, medical history, disease duration, type of visit (clinic or hospital) and Fig. 3 Treatments currently received by patients with psoriasis (i) and psoriasis with psoriatic arthritis* (ii). Impact of the COVID-19 pandemic on treatment (iii) among patients with psoriasis or psoriatic arthritis and reasons for treatment dissatisfaction provided by dissatisfied patients with psoriasis or psoriatic arthritis (iv). COVID-19, coronavirus 2019. *Question addressed to patients with psoriasis along with psoriatic arthritis department being visited by the patient, and healthcare systems. Furthermore, the specific patient recruitment may have led to a selection bias and the study results may not be representative for the overall population of patients with psoriasis/PsA. These interim findings underscore the need for increasing awareness of the systemic aspect of PsD and need for patient educational programs, since PsD impacts patients' physical and mental health. Evaluation of the impact of disease, treatment burden, productive patient-HCP dialogue, shared decision-making, and understanding of patients' perspectives is important so that improved strategies can be implemented to enhance overall QoL of patients.

Medical Writing Assistance. The authors thank Shilpa Kakkar, PhD (Novartis Healthcare, Hyderabad, India) and Trudy Mcgarry, PhD (Novartis, Dublin, Ireland) for providing medical writing support which was funded by Novartis Pharma AG in accordance with Good Publication Practice (GPP3) guidelines (http:// www.ismpp.org/gpp3).

Authorship. All named authors meet the International Committee of Medical Journal Editors (ICMJE) criteria for authorship for this article, take responsibility for the integrity of the work as a whole, and have given their approval for this version to be published.

Author Contributions. All authors contributed to study conception and design. Material preparation, data collection and analysis were performed by Ivette Alarcon, Torben

Kasparek, Jihen Toumi and Susan Frade. The first draft of the manuscript was written by April Armstrong, Ivette Alarcon and Susan Frade and all subsequent versions were reviewed, edited and approved by all authors. All authors read and approved the final manuscript.

Prior Presentation. This study was previously presented in part at the 6th World Psoriasis and Psoriatic Arthritis Conference, June 30-July 3, 2021. 

with Ethics Guidelines. Informed digital consent was obtained from patients before survey participation. Where required, this study was reviewed and approved by local ethics committees/institutional review boards, according to local laws and regulations. This study was performed in accordance with the Declaration of Helsinki of 1964 and its later amendments. No personally identifiable information was collected in this study.

Data Availability. The datasets generated and/or analyzed during the current study are not publicly available. Novartis is committed to sharing with qualified external researchers access to patient-level data and supporting clinical documents from eligible studies. These requests are reviewed and approved on the basis of scientific merit. All data provided are anonymized to respect the privacy of patients who have participated in the trial in line with applicable laws and regulations. The data may be requested from the corresponding author of the manuscript.

Open Access. This article is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License, which permits any non-commercial use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/bync/4.0/.

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We thank the participants of the study.Funding. Sponsorship for this study and Rapid Service Fee were funded by Novartis Pharma AG, Basel, Switzerland.