Quality of life of family caregivers of children with psoriasis

INTRODUCTION

Psoriasis (PsO) is a primarily immune-mediated disease with a genetic and environmental background, where activation of keratinocytes and immune cells causes hyperproliferation of keratinocytes.¹ It is a clinically heterogeneous, lifelong skin disease that manifests in multiple forms, including plaques, flexural, guttate, pustules, and erythroderma.²

PsO affects approximately 2% of the population worldwide, and nearly one-third of patients develop PsO within the first 20 years of life.³ The disease can present at any age, typically between the ages of 9 and 10 years.⁴ The history and symptoms vary depending on the child’s age and the type of PsO.⁵ PsO in infants usually manifests as well-demarcated erythematous plaques in the diaper area, including the inguinal and perianal areas.⁶

Quality of life (QoL) is a multifaceted concept encompassing physical and psychological well-being, social relationships, and socioeconomic factors.⁷ Pediatric PsO (age of onset <18 years) has a significant negative impact on QoL, and patients are at higher risk of developing psychosocial disorders compared to patients without PsO.⁸ Additionally, pediatric patients with PsO suffer from social discomfort, bullying, and stigma due to the visibility of psoriatic plaques.^9,10

Chronic skin diseases have been shown to impact not only the QoL of patients but also the QoL of their families, who share the overall burden of the disease.^11–13 This important aspect of the QoL model was conceptualized as “The Greater Patient,” introduced by Basra and Finlay in 2007¹⁴ to describe the immediate close social group affected by a person having skin disease.

Considering the chronic course of the disease, the frequent use of inconvenient treatments in pediatric patients, and the emotional and financial dependence of children on their caregivers, childhood PsO can pose a significant burden to parents and other family members.¹⁵

Clinical evaluation of children with PsO usually requires assessing and monitoring the QoL of parents and caregivers, taking into account the possibility of psychological support.¹⁶ The family dermatology life quality index (FDLQI), designed by Basra et al., is a validated dermatology-specific instrument designed to assess and quantify the impact on the QoL of family members of patients with skin diseases during the preceding month.^17,18

Improving family QoL can help reduce family psychological distress and help build a supportive relationship with parents, which in turn can lead to improved patient compliance and outcomes.¹⁶

MATERIALS AND METHODS

RESULTS

Correlation of QoL with significant variables and independent predictors of QoL among studied caregivers

There was a weak but significant negative correlation between QoL square root and caregivers’ education, socioeconomic scale, and child education. However, there was a positive correlation between the square root of the QoL score and current treatment, treatment history, previous hospitalization, presence of pustular PsO, involvement of the face, scalp, and genital areas, and PASI score [Table 4a, Figure 1].

Table 4a: Significant correlations of QoL square root with different variables.

Variable	QoL square root
	r	p-value
Caregiver education	−0.2	0.003
Socioeconomic scale	−0.3	≤0.001
Child education	−0.2	0.03
Current treatment	0.2	0.003
Treatment history	0.2	0.03
Previous hospitalization	0.2	0.01
Pustular psoriasis	0.2	0.003
Face involvement	0.2	0.02
Scalp involvement	0.2	0.03
Genital involvement	0.4	<0.001
PASI	0.3	<0.001

Qualitative variables were entered into the model as dummy variables, with caregiver education coded as 0 < high school, 1 high school, and 2 > high school. Child education: 0: preschool, 1: primary, 2: preparatory; treatment history coded as 0: topical, 1: combination. For current treatment, 0: topical, 1: phototherapy, 2: systemic, 3: combination. In addition, 0 was given for no previous hospitalization, no pustular psoriasis, no face involvement, no scalp involvement, and no genital involvement.

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Figure 1:

Correlation between PASI score and QoL square root.

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Multivariate linear regression analysis revealed that independent predictors of QoL among caregivers of psoriatic children were genital involvement, socioeconomic status, and severity of PsO (p ≤ 0.001, ≤ 0.001, and 0.013, respectively) [Table 4b].

Table 4b: Independent predictors of QoL square root among studied caregivers.

Variables	B	p-value
Genital involvement	0.6	≤ 0.001
Socioeconomic score	−0.04	≤ 0.001
PASI score	0.014	0.013
Constant	4.46
Model F	19.3
Model R2	0.52
p-value	≤0.001

The qualitative variable (genital involvement) was entered into the model as a dummy variable (0 = no and 1 = yes). p value of ≤ 0.05 was regarded as statistically significant.

DISCUSSION

Family caregivers play a crucial role in the well-being of individuals suffering from chronic diseases. The quality of care provided by the caregiver is often related to their own physical and psychological health. The FDLQI was used in the current study to evaluate the effect of childhood PsO on caregivers’ QoL and revealed a relatively impaired QoL among caregivers. Our results agreed with many previous studies that reported impaired QoL of caregivers of children with PsO.^{12,19,22–25}

Gånemo et al.¹² used the dermatitis family impact questionnaire and assessed the QoL of caregivers of Swedish infants and children with PsO and found that it was impaired, especially with earlier onset of PsO. In the Turkish population, two studies assessed the QoL of caregivers of psoriatic children. The first is the Salman et al.²⁴ study, FDLQI was used to assess caregivers’ QoL. QoL of the caregivers was relatively impaired, showing a slightly better outcome (median FDLQI of 10) than that reported in the current study. The slightly lower score in their study could be attributed to a smaller sample size with relatively mild disease severity of the subjects. The second study done by Tekin et al.²⁵ measured the QoL of caregivers of 129 children with PsO using the validated Turkish version of the Dermatology Family Impact Scale and showed that childhood PsO had a significant impact on the QoL of caregivers.

In Poland, Zychowska et al.¹⁹ reported that pediatric PsO had a significant impact on caregivers’ QoL with a median QoL score of 12.0. The slightly higher median FDLQI score despite a smaller sample size (only 65 caregivers) may be due to the inclusion of caregivers with chronic diseases, including PsO (6%), causing a more impaired QoL. However, caregivers with any chronic disease that affects the QoL were excluded from our study. According to Kim et al.²² Australian study, families’ QoL was significantly reduced when a child has PsO (median FDLQI of 12 points). Our results agreed with Elgamal et al.,²³ who demonstrated that childhood PsO had a significant impact on the QoL of the caregivers in Egypt with a mean FDLQI of 13 ± 5.1.

In the current study, most caregivers were females, with mothers comprising the predominant group. Our results followed Salman et al.,²⁴ Tekin et al.,²⁵ and Zychowska et al.,¹⁹ with mothers representing 84.5%, 82.9%, and 93.85%, respectively. The strongly established model of role division in the family, with the father typically being the main earner and the mother spending more time caring for the children, is the possible explanation of these results. Żychowska et al.¹⁵ examined the differential impact of childhood PsO on maternal and paternal well-being using the Polish version of the FDLQI and found that mothers’ QoL was significantly more impaired than fathers’. Although a previous Ukraine study carried out by Chernyshov²⁶ found no significant gender difference among parents in the evaluation of the impact of dermatitis on the families of children with atopic dermatitis, both studies agreed that the difference, if present, may be due to the diversity of ways of thinking and habits within the couple, rather than to gender itself. However, we cannot rely on our results regarding this impact difference, as the majority who completed the questionnaire were mothers versus only seven fathers. There was no statistically significant association between caregivers’ ages and their QoL in the current study, and this agreed with previous studies by Zychowska et al.¹⁹ and Żychowska et al.¹⁵

An individual’s well-being depends on demographic, social, and psychological factors, as well as a stable income to support oneself and one’s family. In our analysis, caregivers with low socioeconomic status had significantly higher QoL scores, indicating greater impairment, with a significant negative correlation between socioeconomic level and QoL. These results are consistent with an Indian study by Nayak et al.²⁷ who investigated the correlation between financial status and QoL in PsO. They found a significant negative correlation between patients’ family income and the Dermatology Life Quality Index (DLQI). The costs of treatment, transportation to the hospital, and the need to leave frequently from work to take care of the child can all affect the caregiver both physically and psychologically.

We didn’t find any significant differences between boys and girls in the impact of PsO on their parents’ QoL. This agrees with many previous studies.^12,15,22,23 Controversial results in Tekin et al.²⁵ Turkish study demonstrating greater QoL impairment in caregivers of boys than girls. On the other hand, Zychowska et al.¹⁹ found that caregivers of girls had higher FDLQI scores than caregivers of boys in Poland but did not reach statistical significance. Cultural differences might affect the outcomes of childcare-related studies and explain these controversial results.

Median QoL scores were significantly higher in preschool children compared to those with primary and preparatory education. Less educated children depend more on their caregivers and are less able to participate in their care routine, resulting in a greater impairment of QoL in their families, explaining the significant negative correlation between the child’s education and QoL score.

The presence of previous hospitalization for PsO was associated with a more impaired caregivers’ QoL with a significant positive correlation. Along with ignoring their obligations at home and work, parents should stay with their ill child, causing disruptions to their daily routine, raising some anxieties, and increasing their stress and frustration levels. The same explanation would apply to pustular PsO, which is associated with an increased risk of hospitalization and the presence of frequent systemic manifestations such as fever and malaise, which make it a risk factor for impaired QoL, with a significant positive correlation. Our results are in line with Elgamal et al.,²³ who demonstrated that pustular PsO had the maximum mean FDLQI scores and then a more impaired QoL.

Involvement of the face, scalp, and genital areas was associated with statistically significant higher median QoL scores in our analysis. Our findings followed previous studies by Tekin et al.²⁵ and Elgamal et al.,²³ who reported that scalp involvement was associated with a statistically significant higher Children’s Dermatology Life Quality Index (CDLQI) and FDLQI, respectively. Scalp involvement, along with its possible effects (e.g., dandruff on clothes, difficulty combing hair, and visibility of the lesions, may have a significant impact on the psychosocial well-being of children and their caregivers, explaining the previous findings. Facial lesions are highly visible and can impair vision and hearing; as a result, they can significantly impair the QoL of both children and caregivers. Itching, soreness, irritation, and the caregiver’s worry about the child’s sexual health in the future are the possible causes of such marked impairment of QoL in genital PsO.²⁸

In our analysis, caregivers of children with moderate or severe PsO had statistically significant higher median QoL scores compared to caregivers of children with mild PsO, which is consistent with many previous studies.^12,23–25 A previous study in Australia by Kim et al.²² was conducted to investigate the relationship between FDLQI and PASI and reported a significant positive correlation between the two variables. Given that patients with more severe PsO have a variety of issues that affect many aspects of daily life. Increased symptom severity, including itching, scaling, and involvement of larger body surface area, can be the possible explanation for this significant correlation.²⁹ However, Zychowska et al.¹⁹ and Żychowska et al.¹⁵ found that the FDLQI of the caregivers was not correlated with the severity of PsO measured by PASI.

Caregivers of children with both a history of combination treatment and current combination treatment had significantly higher median QoL scores than those receiving topical treatment only, with a significant positive correlation. Our results followed Tekin et al.,²⁵ who emphasized that caregivers of patients receiving systemic medications or phototherapy were found to be impaired in several aspects of QoL. Some of these were treatment-related, such as the financial burden of treatment and the time spent caring for patients.

To investigate the independent predictors associated with FDLQI, multivariate linear regression analysis was done. It revealed that genital involvement, socioeconomic status, and severity of PsO were significantly associated with FDLQI. On the other hand, the independent predictors of dermatological family impact scale in a previous study by Tekin et al.²⁵ were treatment status, CDLQI, and arthritis.

CONCLUSION

This study supports the concept of the “Greater Patient” as the psychosocial effect of pediatric PsO extends beyond the patient. Caregivers of children with PsO experience a relatively impaired QoL. The independent predictors of impaired QoL among caregivers include socioeconomic status, genital involvement, and severity of PsO.