Patient Perspectives of the Impact of Psoriatic Disease on Quality-of-Life in India: Sub-analysis from the Global Psoriasis and Beyond Survey

Abstract

Background:

Psoriatic disease (PsD), including plaque psoriasis (PsO) and psoriatic arthritis (PsA), comprises a wide spectrum of manifestations and significantly impacts quality-of-life (QoL). Here, we assessed patients’ understanding of PsO and PsA as a systemic disease, its impact on their physical and emotional well-being, and patients’ experiences with healthcare professionals for shared treatment decision-making.

Materials and Methods:

The Global Psoriatic Disease and Beyond Survey was a cross-sectional, qualitative, online survey conducted on patients with moderate-to-severe PsO with/without concomitant PsA. This analysis reports findings from Indian patients.

Results:

Of the 261 surveyed patients, 27% with PsO reported concomitant PsA, of whom 89% reported PsA severity as moderately or highly active. Overall, 92% had heard the term “PsD,” and 90% knew their condition was a systemic disease. Few were aware of PsD manifestations (palmoplantar psoriasis, 49%; nail psoriasis, 43%; axial symptoms, 40%; PsA, 34%) and comorbidities (cardiovascular disease, 33%; obesity, 30%; diabetes, 28%). Eighty-nine percent of patients indicated their skin problems had a “very-large” to “extreme-large” impact on QoL. Ninety-seven percent of patients experienced discrimination and stigmatization from others. Eighty-one percent of patients were not involved in deciding treatment goals. Few (PsO, 6%; PsA, 9%) patients were dissatisfied with current treatment; ≥50% patients reported incomplete relief of skin symptoms (PsO) and joint symptoms (PsA) as the reason for dissatisfaction.

Conclusion:

Lack of awareness of the manifestations and comorbidities associated with PsD and poor QoL highlights the need for patient education, shared treatment decision-making, and a multidimensional approach to PsD management in India.

Introduction

Psoriatic disease (PsD) is a chronic systemic auto-inflammatory disorder encompassing several manifestations of organs and tissues involved in many patients with plaque psoriasis (PsO), including but not limited to joints, skin, eye, and gut inflammation.[1] In addition to primary and extra-articular manifestations, several comorbidities including diabetes, cardiovascular disease, and other metabolic syndromes impact PsD and affect disease outcomes.[2] In India, PsO prevalence was estimated at 0.4–2.8%,[3] and approximately 8.7% of patients with PsO have concomitant psoriatic arthritis (PsA).[4] The high disease burden and the associated complexity of both PsO and PsA have a negative impact on the quality-of-life (QoL) of affected patients leading to social stigma and discrimination, impacting day-to-day activities, distress, disability, and deterioration of physical functioning.[5,6] Despite therapeutic advances, several unmet needs still hamper PsD management including delay in diagnosis, patient dissatisfaction, under-treatment, and patient access to new therapies.[1,7,8] Understanding patients’’perspectives about their disease and treatment constitutes an essential facet of a shared decision-making approach. However, many patients still lack a complete understanding and knowledge of the complexity of PsO, PsA, and related manifestations.[1] Moreover, it remains unclear whether patients are knowledgeable of PsD and its comorbidities, especially in India.

Psoriasis and Beyond: The Global Psoriatic Disease and Beyond Survey, a joint research initiative between the International Federation of Psoriatic Disease Associations (IFPA), dermatology experts, and Novartis, was designed to assess patients’ understanding of PsO and PsA as part of the systemic disease and describe the humanistic and physical burden of living with the condition. The interim results of the survey have been published elsewhere.[1] This sub-analysis presents findings from patients with PsO and PsO with concomitant PsA (PsO-PsA) from India.

Materials and Methods

Study design and patients

This was a cross-sectional, quantitative online survey conducted among patients recruited from 20 countries across Australia, Europe, America, and Asia. The detailed methodology has been published elsewhere.[1] Eligible patients were adults (≥18 years) with a self-reported diagnosis of PsO and PsO-PsA before or at the time of data collection with an affected body surface area (BSA) of >5–<10 (moderate-to-severe PsO) affecting sensitive and/or prominent body parts such as the face, palms, hands, fingers, genitals, soles of feet, or nails or a BSA > 10 (severe PsO).

The patients were screened for eligibility through a five-minute online survey. Once qualified, they had to provide consent to continue taking a 25-minute online survey. Patient recruitment was completed through the Institut de Publique Sondage d’Opinion Secteur (Ipsos SA) online panel (agency or self-registered) and patient advocacy groups (organized and coordinated by Novartis/IFPA). The survey questionnaire included validated tools for patient-reported outcomes (Dermatology Life Quality Index [DLQI], Work Productivity and Activity Impairment Questionnaire [WPAI], Psoriasis Epidemiology Screening Tool [PEST]) and non-validated questions adapted from the “Clear Skin” survey described elsewhere.[6]

Objectives and analysis

The primary objective was to assess patients’ understanding of PsO and PsA as systemic diseases and the physical and humanistic burden of living with the condition. Secondary objectives included evaluating patients’ perceptions and attitudes related to their relationship with healthcare professionals (HCPs), understanding the patient journey through the healthcare system, assessing barriers to self-management and diagnosis, patient perceptions on biologics, treatment expectations, and satisfaction with care.

Statistical analysis

The Ipsos was used to perform all the descriptive analyzes. Continuous variables were represented by mean, median, minimum, and maximum values. Categorical variables were summarized in numbers and percentages.

Results

Demographics and disease characteristics

Of the 1394 patients with PsO or PsO-PsA surveyed from Asia, 261 patients from India who completed the online survey between November 2021 and January 2022, were included in this analysis. Of the 261 patients, 71 (27%) had PsO-PsA, and 68% were female, with mean age of 32.3 years [Table 1].

Table 1.

Baseline demographics and clinical characteristics of patients with PsO or PsO-PsA

Variable	Overall (n=261)
Gender, Female	68%
Age, mean, years (Male)	30.1
Age, mean, years (Female)	32.3
Marital status
Single	22%
Married/Domestic partnership	74%
Separated/Divorced/Widow	4%
Educational status
University	62%
College	36%
High school	2%
PsO severity, Moderate (BSA>5–<10)	62%
PsO severity, Severe (BSA≥10)	38%
PsO symptoms
Dry skin that may crack and bleed	67%
Red, raised, inflamed patches of skin	66%
Whitish-silver scales or plaques on the red patches	64%
Soreness around patches	46%
Itching and burning sensations around patches	41%
Thick, pitted nails	7%
PsA prevalence	27%
PsA severity, Low*	11%
PsA severity, Moderate*	66%
PsA severity, High PsA*	23%
PsA symptoms*
Swelling on the back of your leg, just above your heel	73%
Swollen and tender joints, especially in finger(s) and/or toe(s)	66%
Heel pain	63%
Stiffness in the morning that fades during the day	39%

BSA=Body surface area, PsA=Psoriatic arthritis, PsO=Plaque psoriasis. *n=71

Patient’s disease awareness

Most patients (90%) were aware of PsO and PsA being a systemic disease and had heard the term “PsD” (92%). Nearly, half of patients were aware of PsD manifestations including scalp psoriasis (56%), palmoplantar psoriasis (hands and feet, 49%), nail and genital psoriasis (43% each), and axial symptoms (40%). Only 34% of patients with PsO knew about PsA [Figure 1a]. Patients were aware of an average of 2.8 manifestations related to PsO/PsA. Regarding comorbidities, only about one-third of patients were aware that rheumatoid arthritis (37%), cardiovascular and axial disease (33% each), anxiety and high cholesterol (31% each), obesity (30%), and diabetes (28%) were associated with PsO/PsA. Patients were aware of an average of 3.6 comorbidities associated with PsO/PsA [Figure 1b].

Figure 1.

Proportion of patients’ awareness of PsD-related manifestations (a) and associated comorbidities (b). *Only shown to PsO only patients. A total of 261 patients were analyzed. CVD = Cardiovascular disease, GI = Gastrointestinal, PsA = Psoriatic arthritis, PsO = Plaque psoriasis, RA = Rheumatoid arthritis

Physical impact of the disease

The physical impact of the disease was considered as mild in 65%, moderate in 18%, and severe in 17% among all patients. Patients had an average of six body parts affected by PsO. The most affected parts include legs (69%), fingers (48%), scalp, knee, and neck (46% each), chest (41%), and arms and face (39% each). Among patients with PsO-PsA, 11%, 66%, and 23% had low, moderate, and high PsA severity, respectively. Patient-reported PsA symptoms were swelling on the back of the leg just above the heel (73%), swollen and tender joints, particularly in the finger(s) and/or toe(s) (66%), and heel pain (63%).

Among all the patients with PsO without concomitant PsA, 81% screened positive for PsA using the validated PEST tool, which indicates the potential association of PsO with PsA. Overall, 94% of patients consulted HCPs about joint symptoms.

Psoriatic disease impact on quality-of-life

Based on the DLQI questionnaire,[9] the majority (89%) of patients indicated that their skin problems had a “very-large” (31%; DLQI score: 11–20) to “extreme-large” (58%; DLQI score: 21–30) impact on their QoL over the past week. On a scale of 1–10, on average, patients stated the impact of PsO/PsA on their emotional well-being as 8.1; 72% reported their condition impacting their overall emotional well-being considerably, and only 5% reported their condition did not influence their overall emotional well-being at all or only very little. Figure 2a represents the emotional impact on QoL. Astonishingly, 93% of patients felt their condition impacted their past or current relationships [Figure 2b], and 97% of patients reported experiencing stigma and discrimination by others [Figure 2c].

Figure 2.

Experiences of patients—emotional impact (a), impact on sexual life and relationships (b), stigma and discrimination (c). *including caring for children, grandchildren, partner, employment (both paid and unpaid), including any impact of dependence on others. ^†e.g. refusal to provide treatment at a beauty clinic/cosmetic studio, people refusing to serve in shops, being asked to leave a form of public transport. A total of 261 patients were analyzed

Regarding disease impact on work-related experiences measured using WPAI, 74% could not go to work at all due to skin problems in the past week. Overall, 25% reported discrimination at work, and 33% had difficulty finding a job. In addition, 33% said that their choice of work and/or career was influenced by their condition.

Patient − HCPs relationship - perceptions and attitudes

Patients with PsO (83%) and PsO-PsA (85%) had high confidence and trust in HCPs who treat their disease and respective symptoms. Overall, 62% of patients actively questioned HCPs about the link between PsO and PsA, and 30% of HCPs actively explained the linkage. However, 81% of patients reported that they were not involved in deciding treatment goals. The HCP-aligned treatment goals [Figure 3a] and patients’ personal treatment goals [Figure 3b] are presented.

Figure 3.

Treatment goal alignment with HCPs (n = 255) (a) and patient’s personal treatment goal (n = 261) (b). *Only shown to PsO and PsA patients. PsA = Psoriatic arthritis, PsO = Plaque psoriasis

Understanding the patient journey through the healthcare system

Patients with PsO were treated mainly by a dermatologist (37%), while patients with PsA were managed by a primary care physician (27%) and a rheumatologist (25%). The average delay from symptoms onset to a confirmed diagnosis was 1.6 years for PsO and 1.2 years for PsA. Only half of patients with PsO (51%) and PsO-PsA (48%) were treated with biologics. The details of the current treatments for PsO and PsO-PsA are presented in Figure 4a and Figure 4b, respectively. Corona Virus Disease (COVID)-19 impacted current treatment in ≥90% of patients. Instead of a personal visit, 51% of patients with PsO preferred telephonic appointments and 70% of patients with PsA opted for online or video consultations [Figure 4c]. Overall, 6% and 9% of patients were dissatisfied with their PsO and PsA treatments, respectively. Patient dissatisfaction was primarily caused by no or partial relief of skin symptoms (58% each) for patients with PsO, and uneasiness of treatment for use (67%) for patients with PsA [Figure 4d].

Figure 4.

Current treatment options used in patients with PsO (n = 261) (a) and PsO-PsA (n = 71) (b) the impact of COVID-19 on treatments of PsO (n = 237) and PsO-PsA (n = 64) (c) and the reasons for treatment dissatisfaction* (d). *Small Base (<30). ^†Only shown to PsO with PsA patients. PsA = Psoriatic arthritis, PsO = Plaque psoriasis

Discussion

This Indian subpopulation analysis of the Global Psoriatic Disease and Beyond Survey provided valuable insights into patient’s perspectives regarding disease burden, impact on QOL, and patient involvement in shared decision-making. In this analysis, only 27% of patients with PsO had concomitant PsA, in line with the interim results of the Global Psoriatic Disease and Beyond Survey in the global population (31%),[1] and analysis from the population-based UPLIFT (understanding psoriatic disease leveraging insights for treatment) survey (28%).[10] Only one-third (34%) of patients knew that PsA is a manifestation of PsO, similar to the interim results (29%) of the global population.[1] In the current study, most of the patients had heard the term “PsD” and were aware of PsO and PsA as systemic disease. However, only a limited number of patients had awareness of PsD manifestations and associated comorbidities. This suggests that a gap exists in patient awareness regarding disease burden and consequences. Hence, patients need to be educated regarding PsD comorbidities, its consequences, and the relationship between PsD comorbidities and complications caused due to lifestyle changes including smoking and alcohol.[1]

In this study, females are more affected with PsO than males (68% vs 32%). This is contrary to the studies published in India reporting male preponderance in the prevalence of PsO (male:female ratios of 1.9:1, 1.2:1, and 1.38:1).[11,12,13] In this study, more than one-third (38%) of PsO cases are severe in nature and 62% reported moderate PsO. A clinico-epidemiological study from India reported similar results and found 62.5% and 37.5% of patients had moderate and severe PsO, respectively.[12] A prospective observational study from India also found a similar proportion of severe/very severe patients with PsO (37.7%).[14] Legs (69%), fingers (48%), scalp, knees, and neck (46% each) were the predominant sites involved in this analysis. These findings are in line with studies published across the Indian subcontinent, reporting lower limbs (78%),[11] trunk and limbs (70% each),[4] and scalp and extremities (74%),[15] as the most common sites of PsO in India.

The QoL of patients with PsO and PsO-PsA, as measured by DLQI, had a significant impact on their daily lives. This is in line with the observed deterioration of QoL (determined by DLQI) of patients with PsO reported elsewhere.[5] However, our QoL deterioration findings (58% with an extremely large effect and 31% with a very-large effect) were higher than those reported in a Danish patient cohort (1.2% with an extremely-large effect and 8.3% with a very-large effect),[16] highlighting geographical and population differences in patients’ QoL assessments. Nonetheless, observational studies from India reported that PsO had a very-large effect on QoL in 34–35% of patients when determined through DLQI.[14,17] In contrast, a cross–sectional observational study from India found that PsO had a very-large effect on QoL in 70% of patients.[18] A prospective observational study from India including 154 patients with PsO found that 90.3% patients had depression.[14] Age, marital status, educational status, working status, and severity of PsO were significantly impacting depression in these patients.[14] Mathew et al. included 80 patients with PsO and concluded that patients with higher severity of disease were associated with higher disability, both physically and mentally, along with increased stress.[19] In a hospital-based study from India, including ∼80% of PsO patients in upper socioeconomic strata, reported that lower family income (P < 0.02) and higher disease severity (P < 0.001) had a substantial impact on QoL of patients.[20] Since, in the current analysis about 38% of patients had severe PsO, this might lead to an increase in DLQI score. Similarly, most of the patients in our survey were emotionally distressed and impacted by their condition. This is in line with the combined data from 13 cycles of surveys conducted by the National Psoriasis Foundation (NPF) in patients with PsO or PsA (N > 75,000), wherein >80% stated that PsO affected their emotional state and interfered with their overall well-being.[21]

The QoL of patients with PsO is significantly impacted as the disease is chronic in nature.[17] In our study, 74% of patients could not go to work due to their skin problems. This also led to workplace discrimination in one-fourth of patients, significantly impacting their daily activities. The NPF survey also reported similar results where 92% of patients skipped work mainly due to PsO or PsA.[21] A study from India comprising 75% of patients with lower income group, found that the QoL of patients with PsO was mostly impacted by daily activities (90.6%), going to work (84.4%), spending leisure time socially and in public places (71.9%), problems with treatment (68.7%), and personal relations (62.5%).[22] In a cross-sectional study from India including 84% patients with PsO with low socioeconomic strata, 40% of patients indicated that PsO had impacted their career, 33.3% lost their job due to PsO, 66% were reluctant to attend family functions, 44% had sexual concerns, and 58% had issues with partners or friends.[23] In our study, 40% of patients avoided sex due to PsO and 32% had issues with their partners regarding sexual relationships. Gupta MA and Gupta AK also showed similar findings as 40.8% of moderately to severely affected patients had sexual difficulties since the onset of PsO.[24]

The study findings suggest that only 37% of PsO patients and 25% of PsA patients are managed by dermatologists and rheumatologists, respectively, indicating a potential gap in referral to a specialist and may lead to disease mismanagement. In this analysis, the diagnosis of PsO and PsA from the first onset of symptoms was delayed by 1.6 years and 1.2 years, respectively. This could result in a significant impact on treatment decisions, highlighting the gap in patient education, delays in screening, and diagnosis by the HCPs. In a multicenter, cross-sectional quantitative survey conducted among patients with moderate-to-severe PsO and dermatologists in India, the average delay reported by patients to consult a dermatologist was 7.8 months.[25] In our study, 81% of patients with PsO without concomitant PsA were screened positive for PsA. This highlights the opportunity to increase PsA screening by dermatologists. Our survey presents a significant opportunity for the healthcare system in the Indian subcontinent to manage affected patients efficiently. In this analysis, 50% or more patients reported a lack of relief of skin or joint symptoms and uneasiness of treatment as reasons for dissatisfaction with their current therapy. Although treatment options like interleukin-17 inhibitors and tumor necrosis factor inhibitors improved clinical outcomes in PsO and PsA,[26] in our study, only half of patients with PsO and PsA were treated with biologics. This highlights the existence of a significant gap in addressing the therapeutic aspects of PsO in the region.

This study found that there is a robust patient–HCP relationship. Most of the patients (>80%) trusted their HCPs to treat skin and joint problems, and nearly two-thirds (62%) of patients actively questioned HCPs about their disease condition. However, almost 80% of patients did not participate in discussions with HCPs regarding their treatments, highlighting the scope for improvement in the shared decision-making approach among PsD patients in India. In a global online survey, >85% of patients and physicians were dissatisfied with their communications regarding treatment/management of PsA, symptoms, impacts on physical and daily activities, and overall health.[27]

The patient–HCP relationship remains one of the critical pillars that could improve patient outcomes in chronic disease conditions.[28,29,30,31] A mismatch between patients’ and HCPs’ perceptions of disease severity and treatment requirements is often seen as a roadblock to achieving required treatment goals.[32] Based on our study findings, such a shared decision-making approach is limited in the Indian subcontinent and remains unexplored for patients with PsO and/or PsA.

Due to the fact that PsD is a chronic systemic disease with comorbidities and physical burdens, awareness about skin conditions requires proper discussion with HCPs and a shared decision-making process about the treatment of the disease is warranted. The shared decision-making approach between patients and HCPs is unequivocally emphasized by the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis,[33] European Alliance of Associations for Rheumatology,[34] and the American College of Rheumatology,[35] to achieve better treatment outcomes and patient satisfaction.

Limitations

The survey findings were limited by several points. Firstly, only registered patients with internet access filled out the survey and provided their responses, which could cause selection bias and limit the generalizability of the findings. Furthermore, answers were based on patients’ perceptions and attitudes (i.e., diagnosis, comorbidities, and physician visits), and therefore, recall bias is possible. Secondly, the disease severity was self-reported and could lead to misclassification as the assessment was subjective. The nature of the survey could lead to under- or over-reporting of symptoms and other subjective parameters, even though the study objective was blinded to participants’ observations. Thirdly, while interpreting and comparing results, caution should be exercised considering the variations across geographies, populations, and practice settings, social, economic, and cultural sensitivities, and phenotypical variations in disease severity. Despite these limitations, our survey captured useful data on patients’ perceptions and awareness regarding their disease and its impact on QoL, highlighting the overall disease awareness of the population and offering valuable insights for future research in the Indian subcontinent.

Conclusions

Although PsD is a chronic disease and significantly impacts QoL, in India, limited awareness exists among patients regarding the manifestations of the disease and risk of associated comorbidities, highlighting the need for enhanced patient education and improved awareness regarding the disease. Also, there is a clear need to enhance and support patient–HCP communication for shared decision-making, timely screening, and diagnosis with a multidimensional approach for the management of PsD in India.

Financial support and sponsorship

This global survey was sponsored by Novartis Pharma AG, Basel, Switzerland and medical writing and editorial support were funded by Novartis Healthcare Pvt Ltd, India.

Conflicts of interest

BS Chandrashekar, Chitra S. Nayak, and Bikash R. Kar have nothing to disclose. Vineeth Salloju is an employee of Novartis Healthcare Pvt. Ltd., India.

The manuscript has been read and approved by all the authors as per the authorship criteria.