Counseling in psoriasis: overcoming the concerns and challenges

INTRODUCTION

Psoriasis is a chronic, relapsing, systemic inflammatory disorder which predominantly effects the skin. Globally psoriasis affects only 1% of the total population, with men and women being equally affected.¹ The overall incidence in India ranges from 0.44% to 2.2%, with an overall prevalence of 1.02%.¹ Etiology of psoriasis is complex and remains unclear, though there is evidence of genetic, environmental, and immunological factors playing a significant role. It is considered to be an autoimmune disease mediated by T lymphocytes.²

The systemic nature of psoriasis involves inflammatory changes, which may manifest in various forms such as joint pains. According to literature, common comorbidities associated with psoriasis are psoriatic arthritis, cardiovascular disease, psychological disturbances, and metabolic syndrome such as diabetes mellitus type II, arterial hypertension, dyslipidemia.^3,4 This has also been made evident in the Indian population by various studies described in Table 1.^2,5

Though in the present era, advanced treatment regimens are available that may offer a clear skin; improvement in quality of life (QoL) and adequate counseling lay the foundation of psoriasis management.⁶ Patients have feelings of unacceptance and anticipate rejection, leading to poor QoL. As per the national psoriasis foundation, 75% of psoriasis patients had poor QoL.^2,7 Indian data suggests that 28% of moderate to severe psoriasis patients face unemployment post diagnosis with approximately loss of 32 days annually from work.⁸

Despite the adverse effects on QoL, dermatologists tend to concentrate more on physical manifestations rather than the psychological effects of the disease on patient.⁹

Counseling of patients with psoriasis is vital in the management of this disease. The clinicians should be empathetic and spend adequate time with the patients to educate them about psoriasis, steps to cope with the disease, and ensure adherence to therapy.¹⁰ However, it is challenging to do so in routine clinical practice due to time constraints, lack of systematic training of clinicians, limited knowledge of patients regarding the disease and misplaced beliefs.¹¹

A recent survey conducted amongst 19,000 physicians demonstrated that the time spent with patients, in general, depended on the practices, special needs, and working environments.¹² According to the Market Scan Medicaid database, the average time spent by the psoriasis patient’s first visit to the doctor’s clinic and till follow-up appointment is 153 days.¹³

*All above mentioned studies are case control studies.

Without a permanent cure, psoriasis, is perceived as a lifelong burden for patient.¹⁴ The review aims to evaluate importance of counselling and significant aspects needed to be considered while counseling a patient of psoriasis.

LIVING WITH PSORIASIS: PATIENT’S PERSPECTIVE

Psoriasis causes painful, debilitating, physical symptoms associated with psychological impairments. The negative self-perceptions of a patient with psoriasis are beyond the physical discomforts of the disease. If psoriasis is present on the face and hands, it becomes a cause of social stigma, anxiety, embarrassment, and low self-esteem.¹⁵ Gupta et al found 9.7% of patients reported their wish to die, and 5.5% reported active suicidal ideation.¹⁶ Lakshmy et al have reported that among a total of 90 patients, 78.9% had depression and 76.7% had anxiety, while 56.6% patients suffered from severe stress, suggesting a poor QoL. Concurrently, 16.6% patients reported that their QoL was “poor” to “very poor” and 35.6% of them reported “neither poor nor good.”¹⁷

The professional life of a psoriatic patient is also hampered to quite an extent. In a survey of the national psoriasis foundation, US about 17% of total patients aged 18-54 have reported psychological effects in their workplace. Over 6% of employed people have reported that they have been discriminated professionally, and 23% reported that it affected their choice of career. Around 37% of all patients with psoriasis admitted on difficulties in going to school/college and work which consequently affects productivity and performance.¹⁸

Apart from the social life, the impact of psoriasis on the personal life is also inevitable, as many as 38% psoriasis patients agreed it negatively affected their sex life. About 53% of unmarried people admitted that they had difficulty in maintaining sexual relationships, whereas the same was seen in 30% of married people. Around 81% were of the psoriasis patients always worried, and 76% felt guilty that they might pass psoriasis to their progeny.² According to the world health organization (WHO), there were about 804,000 suicides due to psoriasis in 2012 worldwide.¹⁹ A survey of psoriasis patients in UK revealed prevalence of depression in around 10,400 patients, anxiety in 7,100 patients, and 350 suicides attributable to psoriasis each year.

Patients also tend to resort to unhealthy practices such as alcoholism. Studies have demonstrated a higher prevalence of alcohol consumption in psoriasis patients. However, data on the direct association of the co-relation of alcohol use and severity of psoriasis is limited.²⁰

The prevalence of alexithymia was reported to be 24.8% in psoriasis patients implying that these patients also simultaneously face a difficulty to identify, describe and communicate their feelings. It is predominant in females as compared to males especially in cases where plaques extend to sensitive areas like face, hands, or genitals.²¹

TOOLS TO MEASURE QoL

Various tools and questionnaires have been developed to study the impact of the disease on the QoL of patients such as those presented in the table below (Table 2).¹⁰

An increase of more than 3-fold inpatient cost, 1.8-fold outpatient cost and 1.2-fold prescription cost have been reported among psoriasis patients with psychiatric disorders compared to psoriasis patients without psychiatric disorders.²²

PATIENT COUNSELING IN PSORIASIS

Communication between dermatologists and patients lays the very foundation of counseling. It enables the patients to open up and share their concerns. Counseling patients with psoriasis may help in improving their mental and social conditions. These sessions should be aimed at increasing personal control, overcoming negative thoughts, relieve stress, anxiety, depression associated with disease. Clinicians should encourage patients to express themselves, seek social support and avoid syllogism and maintain good feelings about themselves.²³

Management of day-to-day activities, socializing, and keeping themselves busy can aid in managing their long-term health conditions.²⁴

Even before discussing on the various aspects of the disease, it is pertinent to be conscious about the verbatims used. Some of them have been listed in Table 3.

Once dialogue is initiated, different aspects of disease need to addressed to improve patient outcomes (Table 4).

In addition to above questions, it is extremely important to have discussion on lifestyle modifications (Table 5).

TREATMENT CONSIDERATIONS

Since psoriasis can be controlled and not permanently cured, it is important to have in-depth discussion on the treatment aspects with the patients. Treatment should be based on a collective decision between the dermatologist and the patient. Although, from a dermatologist’s perspective, treatment is based on the location and the severity of the disease, it is important to understand what the patients wants and expects from the treatment.²⁵

The primary goal of psoriasis treatment is to achieve skin clearance. According to NICE, there are a number of general questions raised by patients based on different treatment options (Table 6).²⁶

The following are the treatment specific questions described in (Table 7) raised by patients based on different treatment options such as topical, phototherapy, and systematic therapy.

Over 40% of total patients do not adhere to the prescribed treatment due to multiple reasons. The most critical factors that contribute to patient’s non-compliance include treatment burden and failure to achieve skin clearance. Medicines used for the treatment of psoriasis are quite expensive, may have to be used lifelong, and are not financed by universal health coverage schemes. Treatments for psoriasis are either unavailable or not reimbursed in many countries, even on those who are listed among the WHO model list of essential medicines. The recent advancement in the treatment of psoriasis has expanded the options for the patients and physicians both, but it has also led to a higher cost than traditional systemic medications and phototherapy.

Another significant reason for the patient’s non-adherence is the recurrence of the disease or the adverse effects due to medications, which may be disheartening for the patients.²⁷

In order to improve compliance, patients should be evaluated for an appropriate treatment response at dedicated intervals. Further, the patients should be encouraged to contact dermatologists if they are experiencing any untoward effects.^27,28

It is important to encourage patients to live their life to full potential. Dermatologists should encourage their patients to join support groups or patient advocacy so that they could share their feelings with other patients. This can help patients associate with others who have a similar disease and also motivate them to live a better life. In India, these groups can play key role by working in areas like effective communication and collaboration with patient and their families, supporting healthcare research, collaboration with government agencies and sensitize the media for mass awareness.²⁹ Moreover, the clinician should discuss and counsel the patient’s family regarding the non-contagious nature of psoriasis in order to reduce the negative impact on the QoL.³⁰

Limitations

The government needs to take the proper steps to combat the stigma of psoriasis and myths related via campaigns on local mass media. This as well as the inclusion of the treatments in universal health coverage schemes and insurance would help ensure affordable treatments.^31,32 There is a need of high psychiatry referrals for psoriasis condition in India.³³ The psychological counselling should ideally be a separate topic in itself in the dermatology postgraduate education, to sensitize and train budding dermatologists. Psycho-dermatology which is an emerging aspect in the India and can probably be taken up in the clinical practice by the dermatology fraternity with more enthusiasm; liaison between dermatology and psychiatry specialists will be a step in this direction and they will ultimately help in the bettering patient outcomes.

CONCLUSION

The future of psoriasis management is a multi-disciplinary approach with dermatologists, in collaboration with other specialties such as rheumatologists, psychologists etc., depending upon the comorbidity involved. Psoriasis, requires high psychiatry referrals even in India and hence, the role of counselling cannot be overemphasized. It plays a paramount role in setting up the focused individualized discussions around the disease as well as the treatment.

ACKNOWLEDGEMENTS

Author would like to thanks medical writing support in the development of this paper was provided by Tech Observer India Pvt. Ltd.

Funding: Funding source by Novartis Healthcare Pvt. Ltd.

Conflict of interest: None declared

Ethical approval: Not required

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