Family-Related Quality of Life and Burden in Caregivers of Patients with Chronic Skin Diseases

doi:10.21203/rs.3.rs-4695956/v1

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Research Article

Family-Related Quality of Life and Burden in Caregivers of Patients with Chronic Skin Diseases

https://doi.org/10.21203/rs.3.rs-4695956/v1

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Background: Skin diseases significantly impact the psychological well-being, social functioning, and daily activities of patients, which in turn can severely affect the quality of life of their family caregivers. Objectives: To assess burnout prevalence among caregivers of patients with chronic skin diseases (vitiligo, psoriasis, and alopecia areata) and its impact on their quality of life.

Methods: A cross-sectional study using self-assessment questionnaires was conducted on 213 caregivers, utilizing the Zarit Burden Interview (ZBI) and the Family Dermatology Life Quality Index (FDLQI). The caregivers were equally divided among those caring for patients with psoriasis, alopecia areata, and vitiligo.

Results: The study found that 29.5% of caregivers reported "not having enough time" due to caregiving, especially those caring for patients with psoriasis and vitiligo. Additionally, 37.1% of caregivers experienced stress balancing caregiving with other responsibilities, particularly those caring for patients with alopecia areata and psoriasis.We found that caregivers of psoriasis patients experienced the highest burden, followed by those of patients with alopecia areata and vitiligo. Positive correlation was found between ZBI scores and caregiver age, duration of patient care, FDLQI scores, and disease severity. Similarly, FDLQI scores correlated positively with caregiver age, time spent caregiving, duration, and disease severity.

Conclusion: Caregivers of patients with chronic skin diseases face significant burdens that adversely affect their quality of life. It is crucial to spotlight these caregivers, as addressing their challenges can lead to better support systems and improved quality of life for both caregivers and patients.

burnout syndrome

Zarit Burden Interview

vitiligo

alopecia areata

psoraisis

caregiver

An individual's psychological well-being might be adversely affected by chronic skin conditions. Alopecia areata, vitiligo, psoriasis, atopic dermatitis, and acne vulgaris are some of the most frequent dermatologic illnesses associated with a higher psychological burden. Sexual dysfunction, low self-esteem, anxiety, depression, problems with body image, social isolation, and anxiety are common psychosocial concerns that result from these conditions (1).

The close relatives of individuals with dermatological issues might experience psychological, physical, and social difficulties. Evaluating and improving the patients' and their families' quality of life is therefore essential (2). Skin conditions significantly affect a patient's daily activities, social interactions, and emotional well-being. Due to the chronic nature of numerous skin disorders and the methods used in therapy, a patient's close family is frequently involved in providing care and is impacted by several ways via the patient's skin problem (3).

Psoriasis is a long-term skin disorder that often affects people under the age of 18. It significantly lowers the quality of life for both the affected individuals and their family members (4). Alopecia areata (AA), an autoimmune disorder, affects the hair follicles and causes non-scarring hair loss. Patches of hair loss that are restricted to the scalp, impact the eyebrows and eyelashes (alopecia totalis), or affect every portion of the body that bears hair (alopecia universalis). It has been linked to severe psychological stress and low self-confidence, which can be mentally exhausting for the patient. In some cases, this strain leads to clinical symptoms of anxiety or depression (5).

Alopecia areata (AA) and psoriasis (PS) are two prevalent inflammatory skin conditions that impact individuals worldwide, regardless of age. They have a detrimental effect on patients' quality of life (QoL) in terms of health-related characteristics like mental, psychological, and physical functioning. Psoriasis significantly lowers the quality of life for both patients and their caregivers(6).

Vitiligo is frequently linked to significantly lower quality of life because of the esthetic disfigurement, social shame, erratic course, and uneven response to therapy. Vitiligo patients express feelings of poor self-esteem, shame, embarrassment, social anxiety, loneliness, and depression (7).

Although the effect of skin disease on the quality of life (QoL) of patients has been documented extensively, very little is known about the effect on the QoL of family members. Therefore, the objective of this study was to assess the prevalence of burnout among caregivers of patients with chronic skin disease (vitiligo, psoriasis, and alopecia areata) and to assess their impact on the quality of life of the patients' family members.

This cross-sectional self-assessment questionnaire-based study was carried out on 213 family members of patients with three different chronic skin diseases (71 patients with psoriasis, 71 patients with alopecia areata, and 71 patients with vitiligo) attending the Dermatology Outpatient Clinic of AL-Zahraa University Hospital during the period from January to April 2024. The clinical study was approved by Al-Azhar’s University Ethics Committee (IRB number IRB2024012255). Informed consent was taken from all family members or partners before participating in this work.

The sample size was determined based on a previous study in which the Mean±SD score of caregiver quality of life was measured as 5.1±4.05 (8). Considering a σ of 0.05, d (margin of error) of 0.02, the required sample size was estimated as 170 subjects after addition of 10% to account for attrition.

Participants included caregivers having an immediate family or partner relationship with the patient and living in the same household for more than 18 years. We exclude caregivers having severe dermatological or psychiatric diseases, pregnant female caregivers, those on contraceptive pills or antipsychotic drugs, those with a history of any systemic disorder, uneducated or uncooperative caregivers, and caregivers refusing to participate .

All patients provided a comprehensive medical history, including their names, ages, marital status, socioeconomic status, level of education, employment status, diagnosis and duration of the illness, past history of any chronic diseases, and family history of the same condition. Caregivers' relation to the patient (mother, father, husband, wife, offspring, or sibling), general and dermatological examinations were performed to determine the severity of the disease. Evaluation of AA severity was done using the Severity of Alopecia Tool score system (SALT), in which the patients were classified according to the percent of hair loss on the scalp into S0 (no hair loss), S1 (<25%), S2 (25–49%), S3 (50–74%), S4 (75–99%), and S5 (100%) total scalp hair loss (9). The severity of psoriasis was assessed using the Psoriasis Area Severity Index (PASI), with patients classified into mild PS (PASI<10), moderate PS (PASI 10-20), and severe PS (PASI >20) (10). Patients with vitiligo were assessed using the Vitiligo Area Scoring Index (VASI). The VASI for each body region is calculated by combining vitiligo area and depigmentation extent within each hand unit, which represents 1% of the body's surface area: 100% - complete depigmentation, no pigment is present; 90% - specks of pigment present; 75% - depigmented area exceeds the pigmented area; 50% - pigmented and depigmented areas are equal; 25% - pigmented area exceeds depigmented area; and 10% - only specks of depigmentation present (11).

All participants completed the following questionnaires:

1. Short version of Zarit Burden Inventory (ZBI-4), developed by Zarit et al. (12), to measure the burden of care among caregivers of people with cognitive and other chronic and refractory conditions. The ZBI-4 questionnaire assesses subjective elements of burden through:

- Do you feel that because of the time you spend with your relative that you don't have enough time for yourself?

- Do you feel stressed between caring for your relative and trying to meet other responsibilities for your family or work?

- Do you feel strained when you are around your relative?

- Do you feel uncertain about what to do about your relative?

Answers are scored from never (0), rarely (1), sometimes (2), quite frequently (3), to nearly always (4). The total score ranges from 0 to 16, with a score ≥8 indicating a higher level of caregiver burden.

2. Family Dermatology Life Quality Index (FDLQI), a 10-item questionnaire created and validated to measure the impact of skin disease on the QoL of the family member (caregivers) or partner on various aspects of life, with scores ranging from 0 to 30. Higher scores indicate greater impairment in quality of life (13).

Statistical Analysis

Data were analyzed using the statistical package for social sciences, version 23.0 (SPSS Inc., Chicago Illinois, U.S.A.). For quantitative data, the mean and standard deviation were utilized. Independent-samples T-test was used to compare two means. Chi-square (X2) test was used to compare qualitative parameters, which were presented as frequency and percentages. To evaluate the correlation between variables, the Pearson correlation or Spearman correlation was performed. The p-value was considered significant at <0.05.

The study enrolled 213 caregivers of chronic skin diseases, of which more than half were female (61.5%), with a mean age of 32.3 ± 16.1 years old, and 46.9% being secondary-educated. More than half (55.4%) of the participants were married. For the caregivers, the mean age was 36 ± 5.8 years old, and 52.6% were females. Half of them (54.9%) were secondary-educated, and 88.3% were married. Regarding the relationship between the patient and the caregivers, 23.0% were offspring and 19.2% were husbands. A percentage of 66.2% spent 24 hours with the patient, and 46.9% had been caregiving for 1–5 years (Table 1).

Specific burden symptoms (absolute and relative frequencies) for each ZBI-4 item are presented in Table 2. The most frequent symptoms of burden identified by the caregivers (“quite frequently” plus “nearly always”) were “don’t have enough time” due to time spent providing care (29.5%), highest among caregivers of psoriasis and vitiligo patients, followed by “feeling stressed between reconciling care and meeting other responsibilities” (37.1%), highest among caregivers of AA and psoriasis patients. The least frequently reported burden symptoms (“never” plus “rarely”) were “uncertain what to do” (46.5%) and feeling “strained when they are near” the patient (45%), highest among caregivers of AA and psoriasis patients (Table 2).

Regarding the characteristics of patients and caregivers by burden status, there was a significant association between burden and patients' marital status, being highest among married subjects at 52.3%. Considering the optimal cutoff point of ≥ 8 points for significant burden, our results indicate that 52.1% (n = 111) of caregivers were classified as having a highly significant caregiver burden. The comparison between caregivers with and without significant burden revealed significant differences in education level, relationship with patients, time spent with patients, and FDQL (p < 0.001). However, there were no significant differences between the risk of burden and the other studied characteristics of patients and caregivers (P > 0.05) (Table 3).

Relating to the relation between chronic skin disease and burden among caregivers, a highly significant burden was found in caregivers of patients with psoriasis, followed by caregivers of patients with AA and vitiligo (Fig. 1).

There was a highly significant positive correlation between the Zarit Burden Scale and the age of caregivers, time spent with patients, duration of caregiving, FDQL, and severity of chronic skin diseases (SALT, VASI, and PASI scores) (r = 0.34, p = 0.000; r = 0.39, p = 0.000; r = 0.69, p = 0.000; r = 0.94, p = 0.000; r = 0.98, p = 0.000; r = 0.96, p = 0.000; and r = 0.94, p = 0.000), respectively. A significant negative correlation was present between the Zarit Burden Scale and the age of patients (r= -0.02, p = 0.76). With respect to caregivers' quality of life, there was a highly significant positive correlation between FDQLI and the age of caregivers, time spent with patients, duration of caregiving, and severity of chronic skin diseases (SALT, VASI, and PASI scores) (r = 0.29, p = 0.000; r = 0.46, p = 0.000; r = 0.67, p = 0.000; r = 0.92, p = 0.000; r = 0.89, p = 0.000; r = 0.9, p = 0.000), respectively. However, a significant negative correlation was found between FDQLI and the age of patients (r= -0.01, p = 0.82) (Table 4).

Caregiver burnout is characterized by physical, psychological, and mental tiredness arising from the long demands of caring for sick family members, particularly those with long-term illnesses or issues. Caregiver burnout manifests as exhaustion, anxiety, sadness, frustration, and lack of concern for one's own well-being (14). This implies that the primary caregivers of an ill individual are also impacted by the illness (15).

According to earlier research (16, 17), family caregivers for patients with chronic illnesses are primarily female, have a relationship as a patient's spouse, and live in the same house. These studies agree with our findings.

A family caregiver is required to provide a range of support, such as financial and emotional support, help with personal and instrumental care, medication administration, symptom management, and illness and treatment monitoring (16). In our study, the majority of caregivers were taking care of their parents; husbands made up the second most common category. This aligns with Chang et al. (18), who found that most caregivers were daughters of the patients.

Our study found that the highest percentage of the caregivers of patients with chronic skin diseases have significant burdens. A highly significant burden was found in caregivers of patients with psoriasis, followed by caregivers of patients with AA and vitiligo. In accordance with Manzoni et al. (19), who demonstrated a high prevalence of depression and anxiety in caregivers of patients with chronic skin diseases: psoriasis, AD, and vitiligo. Similarly, Eghlileb et al. (20) reported that adult patients with psoriasis experience a range of effects on their partners' and families' lives, including diminished personal relationships, social disturbance, psychological pressure, and restrictions on daily and recreational activities. Also, Montero-Vílchez et al. (21) showed a significant burden in cohabitants of patients with AA. Additionally, Jafferany et al. (22) stated that the apparent and deformative nature of chronic skin illnesses can result in social isolation, stigma, embarrassment, shame, and low self-esteem, all of which can contribute to the development of depression and burnout.

The current study reveals that highly-educated family caregivers, husband or wife caregivers, and caregiving duration of 1–5 years significantly have a heavier burden in caring for patients. In keeping with the findings of Sari et al. (17), the relationship with patients and educational attainment are important determinants of the burden experienced by family caregivers. On the contrary, Piran et al. (23) reported that caregivers with lower education experienced higher burdens.

In this study, the perceived caregiver burden was not significantly associated with the caregivers’ age, marital status, gender, and patient’s sex and age group. Contrary to Sari et al., we found a substantial direct correlation between the age, sex, and burden of the caregivers (16).

The quality of life of patients' relatives may also be negatively impacted by the fact that patients with chronic skin disorders commonly require their caregivers to participate in disease-related activities, such as medical visits and therapy applications (24). In agreement with previously published data, we have demonstrated an impaired quality of life for the family members of the patients with chronic skin diseases, confirming the impact of the disease on family life (25, 26).

However, vitiligo has no impact on physical restrictions, patients may experience social exclusion and prejudice as a result of their aesthetic disfigurement. This can have a negative impact on the patients' psychological status as well as that of their parents, caregivers, and other family members (27).

Another finding of the study was that caregivers with high burdens had a more negative impact on their quality of life. It can be assumed that there is a bi-directional relationship between the caregiver's sense of quality of life and emotional symptoms. This result strongly correlates with another study that highlighted the fact that anxiety and depression symptoms worsen with an increasing impact on quality of life (28).

In our study, FDLQI and caregiver's burden scales were positively correlated with the severity of chronic skin diseases, age of caregivers, time spent with patients, duration of caregiving, and burden scales. Patients with chronic skin disorders and their families may not experience decreased daily functioning or the development of psychiatric morbidities if quality of life impairment is identified and assessed early. These findings align with Halioua et al. (26), who reported that disease severity and duration negatively impact the caregiver's quality of life, anxiety, and depression. Additionally, Martinez-Garcia et al. (29) found that an increased body surface area affected and the genital scalp location were associated with a higher FDLQI score. Caregivers of AA patients have high FDLQI scores. Anxiety in cohabitants also showed a correlation with the time of evolution of the disease. The extent of visible body surface area affected correlated with the degree of anxiety in caregivers (28).

This study has some limitations. This is a single-center study with a small sample size and a lack of a control group. Larger, multi-center controlled studies are needed to assess the chronic skin disease impact on family members in various populations.

Caregivers of chronic skin disease patients often bear a significant burden, impacting their quality of life. Addressing their mental health needs is crucial for improving well-being and treatment outcomes. The high burden is influenced by factors such as caregiver relationships, education level, patient time spent, caregiving duration, FDQL, and severity of diseases. The study found a significant positive correlation between FDQLI and caregiver age, patient time spent, caregiving duration, and disease severity. The ZBI-4 is highly accurate in identifying caregiver burden.

(AA)

Alopecia areata

(FDLQI)

Family Dermatology Life Quality Index

(PASI)

Psoriasis Area Severity Index

(PS)

Psoriasis

(ZBI-4)

Zarit Burden Inventory

Ethics approval and consent to participate

This study was approved by Al-Azhar’s University Ethics Committee (IRB number IRB2024012255). Informed consent was taken from all family members or partners before participating in this work.

Consent for publication:Not applicable.

Competing interests:The authors declare that they have no competing interests.

Funding :no funding was obtained for this study.

Acknowledgements: We express our gratitude and appreciation to patients and their families who participated in this study.

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Table (1): Sociodemographic characteristics of patients and their caregivers:

Items

Total

N=213

Patients

Patient Age (Yrs)

Mean ±SD

Min-Max

32.3±16.1

8-67

Patient Gender

Male

Female

82 (38.5%)

131 (61.5%)

Patient Educational Status

Illiterate

Primary

Secondary

University

32 (15.0%)

27 (12.7%)

100 (46.9%)

54 (25.4%)

Patient Marital Status

Single

Married

Widow

81 (38.0%)

118 (55.4%)

14 (6.6%)

Caregivers

Caregivers Age

Mean ±SD

Min-Max

36±5.8

25-46

Caregivers Gender

Male

Female

101 (47.4%)

112 (52.6%)

Caregivers Educational Status

Illiterate

Primary

Secondary

University

0 (0.0%)

11 (5.2%)

117 (54.9%)

85 (39.9%)

Caregivers Marital Status

Single

Married

Divorced

Widow

17 (8.0%)

188 (88.3%)

3 (1.4%)

5 (2.3%)

Relationship with patients

Mother, Father

Wife, Husband

Brother, Sister

Offspring

46 (21.6%)

74 (34.7%)

44 (20.7%)

49 (23.0%)

Time spent with patient

< 6h

6-12 h

About 24 h

25 (11.7%)

47 (22.1%)

141 (66.2%)

Duration of caregiving

< 1y

1-5 y

>5-10y

69 (32.4%)

100 (46.9%)

44 (20.7%)

Table (2): The Zarit Burden Interview four item screening scale (ZBI-4)among studied participants:

Items

N=71

Vitiligo

N=71

Psoriasis

N=71

Total

N=213

Significance tests

Do you feel that because of your relative that you don't have enough time for yourself?

Never

Rarely

Sometimes

Quite Frequently

Nearly always

10 (14.1%)

23 (32.4%)

14 (19.7%)

11 (15.5%)

13 (18.3%)

4 (5.6%)

31 (43.7%)

17 (23.9%)

15 (21.1%)

4 (5.6%)

6 (8.5%)

21 (29.6%)

24 (33.8%)

15 (21.1%)

5 (7.0%)

20 (9.4%)

75 (35.2%)

55 (25.8%)

41 (19.2%)

22 (10.3%)

χ² =15.3

p value =0.05

Do you feel stressed between caring for your relative and trying to meet other responsibilities (work, home)?

Never

Rarely

Sometimes

Quite Frequently

Nearly always

5 (7.0%)

30 (42.3%)

6 (8.5%)

18 (25.4%)

12 (16.9%)

0 (0.0%)

36 (50.7%)

13 (18.3%)

16 (22.5%)

6 (8.5%)

0 (0.0%)

25 (35.2%)

19 (26.8%)

24 (33.8%)

3 (4.2%)

5 (2.3%)

91 (42.7%)

38 (17.8%)

58 (27.2%)

21 (9.9%)

χ² =26.5

p value =0.001*

Do you feel strained when you are around your relative?

Never

Rarely

Sometimes

Quite Frequently

27 (38.0%)

8 (11.3%)

16 (22.5%)

20 (28.2%)

12 (16.9%)

24 (33.8%)

15 (21.1%)

20 (28.2%)

22 (31.0%)

3 (4.2%)

24 (33.8%)

22 (31.0%)

61 (28.6%)

35 (16.4%)

55 (25.8%)

62 (29.1%)

χ² =29.1

p value =0.000*

Do you feel uncertain about what to do about your relative?

Never

Rarely

Sometimes

Quite Frequently

27 (38.0%)

9 (12.7%)

15 (21.1%)

20 (28.2%)

12 (16.9%)

23 (32.4%)

20 (28.2%)

16 (22.5%)

23 (32.4%)

5 (7.0%)

23 (32.4%)

20 (28.2%)

62 (29.1%)

37 (17.4%)

58 (27.2%)

56 (26.3%)

χ² =22.6

p value =0.001*

Table (3): Patients and caregivers risk factors for burden:

Items

Burden score

Significance tests

Accepted

N=102 (47.9%)

High

N= 111 (52.1%)

Patient Age

Mean ±SD

32.2±16.8

32.5±15.4

t =1.3

p value =0.9

Patient Gender

Male

Female

37 (36.3%)

65 (63.7%)

45 (40.5%)

66 (59.5%)

χ² =0.4

p value =0.5

Patient Educational Status

Illiterate

Primary

Secondary

University

17 (16.7%)

49 (48.0%)

19 (18.6%)

15 (13.5%)

10 (9.0%)

51 (45.9%)

35 (31.5%)

χ² =6.3

p value =0.1

Patient Marital Status

Single

Married

Widow

41 (40.2%)

60 (58.8%)

1 (1.0%)

40 (36.0%)

58 (52.3%)

13 (11.7%)

χ² =9.9

p value =0.007*

Caregivers Age

Mean ±SD

34.9±6.1

37.9±5.1

t =3.9

p value =0.000*

Caregivers Gender

Male

Female

51 (50.0%)

50 (45.0%)

61 (55.0%)

χ² =0.5

p value =0.5

Caregivers Educational Status

Illiterate

Primary

Secondary

University

0 (0.0%)

1 (1.0%)

67 (65.7%)

34 (33.3%)

0 (0.0%)

10 (9.1%)

50 (45.0%)

51 (45.9%)

χ² =13.5

p value =0.004*

Caregivers Marital Status

Single

Married

Divorced

Widow

7 (6.9%)

92 (90.2%)

2 (2.0%)

1 (1.0%)

10 (9.0%)

96 (86.5%)

1 (0.9%)

4 (3.6%)

χ² =2.4

p value =0.5

Relationship with patients

Mother, Father

Wife, Husband

Brother, Sister

Offspring

16 (15.7%)

22 (21.6%)

35 (34.3%)

29 (28.4%)

30 (27.0%)

52 (46.8%)

9 (8.1%)

20 (18.0%)

χ² =33.1

p value =0.000*

Time spent with patient

< 6h

6-12 h

About 24 h

17 (16.7%)

41 (40.2%)

44 (43.1%)

8 (7.2%)

6 (5.4%)

97 (87.4%)

χ² =48.9

p value =0.000*

Duration of caregiving

< 1y

1-5 y

>5-10y

64 (62.7%)

36 (35.3%)

2 (2.0%)

5 (4.5%)

64 (57.7%)

42 (37.8%)

χ² =94.4

p value =0.000*

FDQL

No effect

Mild affection

Moderate

Severely large affection

95 (93.1%)

7 (6.9%)

0 (0.0%)

40 (36.0%)

38 (34.2%)

33 (29.7%)

χ² =189.1

p value =0.000*

Table (4): Correlation between Zarit burden score, FDQL and patients, caregivers related factors:

Items	Zarit burden scale		FDQL
Items	r	P value	r	P value
Age of caregiver	0.34	0.000*	0.29	0.000*
Age of the patient	-0.02	0.76	0.01	0.82
Time spent with patient	0.39	0.000*	0.46	0.000*
Duration of caregiving	0.69	0.000*	0.67	0.000*
SALT score	0.98	0.000*	0.92	0.000*
VASI score	0.96	0.000*	0.89	0.000*
PASI score	0.94	0.000*	0.9	0.000*
FDQL	0.94	0.000*	----	----

No competing interests reported.

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Editorial decision: Revision requested
11 Jul, 2024
Editor assigned by journal
09 Jul, 2024
Submission checks completed at journal
09 Jul, 2024
First submitted to journal
06 Jul, 2024

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Family-Related Quality of Life and Burden in Caregivers of Patients with Chronic Skin Diseases

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