DOI 10.1515/ijamh-2013-0332      Int J Adolesc Med Health 2014; 26(4): 541–549

Yasemin Düzçeker, Nuray Ö. Kanbur*, Erkan Demirkaya, Orhan Derman, Lakshmi N. Moorthy and Seza Özen

Quality of life measures and psychiatric symptoms in adolescents with systemic lupus erythematosus and familial Mediterranean fever Abstract Purpose: To describe the relation between global Quality of Life (QL) and psychiatric symptoms in adolescents with systemic lupus erythematosus (SLE) and familial Mediterranean fever (FMF), and to analyze the perceptions of parents and adolescents. Methods: This study included 51 adolescents diagnosed with SLE (n = 25) and FMF (n = 26), and 51 healthy adolescents. The Health Related QL (HRQL) of SLE patients was rated by parents and adolescents using the Simple Measurement of Impact of Lupus Erythematosus in Youngsters© (SMILEY©). The global QL of FMF patients and healthy adolescents was rated by the response given to the first question of the SMILEY© by each parent and adolescent. All participants completed the Brief Symptom Inventory (BSI), which measures psychiatric symptoms. Results: In total, 92.3% with FMF, 56% with SLE and 76.5% of healthy adolescents reported their global QL as good and very good using the first question of the SMILEY©. The global QL perceptions of adolescents and their parents did not correlate (FMF, p = 0.94; SLE, p = 0.16). SLE patients had the highest rate of depression (54.2%), whereas hostility was detected among 54.9% of healthy adolescents. Significant relations were detected between BSI and SMILEY© scores. Conclusion: The global QL perceptions of adolescents with FMF were better than those of healthy adolescents, which may be explained by their perceived relief of anguish they suffer during their short-lived attacks. The global QL perceptions of adolescents with SLE were the worst, most probably due to the chronic course resulting in an awareness of limitations and intense treatment. Adolescents with SLE had similar psychopathological symptom scores when compared with FMF patients and healthy adolescents. This could be explained by developing resilience. Differences in the perception of adolescents versus their parents regarding global QL emphasized the importance of adolescent-specific interviews for chronic illnesses and multidisciplinary follow-up with adolescent medicine.

Keywords: adolescent; familial Mediterranean fever; psychiatric symptom; quality of life; systemic lupus erythematosus. *Corresponding author: Nuray Ö. Kanbur, MD, Division of Adolescent Medicine, Department of Pediatrics, Hacettepe University Faculty of Medicine, Sıhhiye, Ankara, 06410, Turkey, E-mail: [email protected] Yasemin Düzçeker and Orhan Derman: Division of Adolescent Medicine, Department of Pediatrics, Hacettepe University Faculty of Medicine, Ankara, Turkey Erkan Demirkaya: Division of Pediatric Nephrology-Rheumatology, Gulhane Military Medical Faculty, Ankara, Turkey Lakshmi N. Moorthy: Division of Pediatric Rheumatology, Department of Pediatrics, Rutgers University-RWJ Medical School, New Brunswick, NJ, USA Seza Özen: Division of Pediatric Nephrology-Rheumatology, Department of Pediatrics, Hacettepe University Faculty of Medicine, Ankara, Turkey

Introduction Global Quality of Life (QL) is defined as “individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns” by the World Health Organization (WHO) (1). To assess QL in individuals with chronic illnesses, the more defined concept of “Health-related Quality of Life” (HRQL) which has been described as “optimum levels of physical, social and mental functioning including relationships and perceptions of health, fitness, life satisfaction and wellbeing” is more widely acknowledged (2). Systemic lupus erythematosus (SLE) is a chronic disease associated with significant morbidity. There is sufficient evidence from adult studies that SLE affects many aspects of QL and frequently needs psychosocial interventions (3–5). Depression is the most commonly reported psychiatric disease (6) and contributes to lupus fatigue and low QL in adult SLE patients (7). In the literature, there are no studies associated with the frequency of

Brought to you by | University of Connecticut Authenticated Download Date | 6/12/15 12:06 AM

542      Düzçeker et al.: Relation between QL, HRQL and psychiatric symptoms in adolescents with SLE and FMF psychiatric symptoms and effects on HRQL and global QL in adolescents with SLE. Familial Mediterranean fever (FMF) is an autoinflammatory disease characterized by self-limited, inflammatory attacks of fever and serositis, lasting 1–3 days (8–10). Unlike SLE, patients with FMF are healthy and functional in between the attacks and the only major burden of FMF during attack-free periods is the lifelong colchicine treatment. The main objectives of this cross-sectional study were: (i) to determine global QL and the frequency of psychiatric symptoms in adolescents with a chronic rheumatic multisystem disease, namely SLE and an autoinflammatory disease characterized by episodes of acute multisystemic illness, namely FMF; (ii) to describe the relation between global QL and psychiatric symptoms; and (iii) to analyze the perceptions of parents and adolescents concerning the disease and its relation to global QL and HRQL.

Materials and methods This cross-sectional study was conducted between August 2011 and April 2012 at Hacettepe University Faculty of Medicine, Departments of Pediatric Rheumatology and Adolescent Medicine. The study was approved by the Institutional Research Ethics Review Board of Hacettepe University. Written informed consent was obtained from all adolescents and their parents.

Subjects Study group The age range was 13–18 years. SLE (n = 2 5) was diagnosed based on American College of Rheumatology criteria (11). FMF (n = 2 6) was diagnosed based on criteria suggested for the diagnosis of FMF in childhood (12). Parents were also included in the study group. Mean follow-up duration was 3.7 and 5.9 years (minimum 1 year) for adolescents with SLE and FMF, respectively. Patients were excluded if they had overt neuropsychiatric SLE, resistant FMF unresponsive to colchicine or had a significant comorbid medical or psychiatric condition likely to impact QL. All FMF patients were using colchicine and did not have an attack at the time they completed the questionnaires.

were interviewed by an adolescent medicine physician to confirm their well-being both subjectively and objectively. Adolescents who had comorbid chronic conditions or any psychiatric complaints were excluded.

Data collection Data collected included adolescent’s age, gender, global QL, HRQL, current disease status (CDS), physical functions, disease activity, psychiatric symptoms, education, family relationships, duration of the disease (DD) and use of medication(s). Measures used are described below.

HRQL measures HRQL of patients with SLE were rated by adolescents and their parents using the Simple Measurement of Impact of Lupus in Youngsters© (SMILEY©) which comprises four domains under the categories of effect on self, limitations, social and burden of SLE. It is designed for children with SLE under 19 years of age and has parallel parent and child self-reports. It comprises 24 items with responses in the form of a five-step scale with different facial expressions. Each item score ranges from 1 to 5 and total score is transformed to a 1–100 scale. Higher scores indicate better HRQL. The first two items are not included in the SMILEY© domains or calculating the final score. Item one relates to current global QL and item two relates to “current SLE status”. The remaining questions refer the respondent to the previous month (13). The Turkish version of the SMILEY©, which was translated by Moorthy et al. (14), was used in this study. The HRQL of FMF patients and healthy adolescents were not assessed because the SMILEY© is not validated for these two groups; however, the first question in the SMILEY© was used for assessing global QL of FMF and healthy adolescents, whereas the second question in the SMILEY© was also used for assessing “CDS” in adolescents with FMF.

Physical function Adolescents with SLE or FMF completed the Childhood Health Assessment Questionnaire (CHAQ); a physical function scale focusing on limitations and difficulties in the prior week due to illness in children with rheumatic diseases (15–18). It comprises parallel parent and child reports. In the present study, only child reports were used. Lower scores indicate better function and less disability (5, 15, 19–21).

Disease activity

Control group Fifty-one healthy adolescents between 13 and 18  years of age, who were followed at the Adolescent Medicine Clinic, were included as the control group. Adolescents in the control group had their clinic visits on the day of the study. They were all asked about their medical complaints and history, had their physical examinations and

To assess disease activity in SLE, the SLE Disease Activity Index (SLEDAI) and Physician’s Global Assessment (PGA) were used (22). Increased scores represent worsening disease activity. FMF activity was assessed using the PGA and C-reactive protein (CRP). The PGA Likert scale categorizes disease activity as “none = 0”, “mild = 1”, “moderate = 2” and “severe = 3” (23).

Brought to you by | University of Connecticut Authenticated Download Date | 6/12/15 12:06 AM

Düzçeker et al.: Relation between QL, HRQL and psychiatric symptoms in adolescents with SLE and FMF      543

Psychiatric symptoms All adolescents completed the Brief Symptom Inventory (BSI) measuring psychiatric symptoms under the categories of anxiety, depression, negative self, somatization and hostility. The BSI was translated to Turkish, standardized for Turkish adolescents and the cut-off point for psychopathology was found as Global Severity Index (GSI) = 1.0 (24–26). Subscales are graded dividing the sum of relevant scores into number of questions in that area. The cut-off point for psychopathology is accepted as 1.0 (26).

100 90 80 70 60 50 40 30 20 10 0 Very bad

SLE (n=25)

Statistics Descriptive analyses of all variables were performed using SPSS 15.0 for Windows statistical package (SPSS Inc., Chicago, IL, USA). The χ2-test was used for qualitative variables. The Mann-Whitney U-test was performed for testing quantitative data at two groups and the Kruskal-Wallis test for testing quantitative data at three groups. Spearman’s rank correlation test was used to determine correlations between the quantitative and quantitative variables. The statistical significance level was accepted as p  ≤  0.05.

Results Twenty-five adolescents with SLE (21 females, 4 males), 26 adolescents with FMF (12 females, 14 males), 51 healthy adolescents (33 females, 18 males) and 97 parents participated in this study. The global QL perceptions of adolescents were analyzed by the first question from the SMILEY© in five levels from “very bad” to “very good” and no statistical differences were found. Subsequently, the “good” and “very good” levels were categorized in the same group: there were significant differences (p = 0.028) among SLE (56%), FMF (92.3%) and control (76.5%) groups. The global QL perceptions of patients with FMF were the best (Figure 1). The perceptions of parents regarding their children’s global QL did not differ significantly among SLE (66.7%), FMF (90.9%) and control (76.6%) groups (p = 0.205). Global QL perceptions of adolescents did not correlate with the perceptions of parents regarding their children’s QL. BSI scores at psychopathological levels in adolescents did not differ significantly among the three groups. Depression (54.2%) and somatization (33.2%) were more common among patients with SLE, whereas hostility (54.9%) was more common in the control group. Depression (28%) and negative self (12%) were less frequent among adolescents with FMF (Figure 2). When the relation between global QL perceptions and BSI scores were analyzed in adolescents with SLE, there was a significant relation between global QL perceptions and negative self (p = 0.045) and GSI (p = 0.045) scores,

Bad

Normal

FME (n=26)

Good and very good

Control (n=51)

Figure 1 Global Quality of Life perceptions of adolescents based on the first question of the SMILEY© in SLE, FMF and control groups.

whereas no significant association was observed between global QL perceptions and anxiety (p = 0.072), depression (p = 0.29), somatization (p = 0.22) and hostility (p = 0.35) scores. The CDS perceptions of adolescents in SLE and FMF groups were analyzed in five levels from “very bad” to “very good” and no statistical differences were found. When the “good” and “very good” levels were categorized in the same group, 4%, 32% and 64% of adolescents with SLE and 11.5%, 26.9% and 61.5% of adolescents with FMF reported their CDS as “bad”, “normal” and “good or very good”, respectively. CDS perceptions of adolescents with SLE were associated with anxiety (p = 0.044), negative self (p = 0.023), hostility (p = 0.046) and GSI (p = 0.023) scores. Out of 16 adolescents with SLE who reported their CDS as “good” or “very good”, only one had negative self and a GSI score at psychopathological levels, whereas five had hostility scores at psychopathological levels. In the SLE group 8.3%, 33.3% and 58.3% of parents and in the FMF group 13.6%, 13.6% and 72.7% of parents reported their children’s CDS as “bad”, “normal” and “good or very good”, respectively. CDS perceptions of parents in the SLE group were associated with anxiety (p = 0.033), negative self (p = 0.027) and GSI (p = 0.027) scores of adolescents in the BSI. The distribution of BSI scores according to the SMILEY© and SLEDAI scores in patients with SLE is shown in Table 1. Significant relationships were detected between SMILEY© and BSI scores. The social domain of SMILEY© scores of adolescents with SLE associated only with hostility (p = 0.019). However, the social effects domain comprises the subtitles of patient, family and friends. There was no relationship between these three subtitles and BSI scores. However, the relationship between hostility and the question which represents the “social effects domain” of family (“How your family have

Brought to you by | University of Connecticut Authenticated Download Date | 6/12/15 12:06 AM

544      Düzçeker et al.: Relation between QL, HRQL and psychiatric symptoms in adolescents with SLE and FMF

100 90 80 70 60 50 40 30 20 10 0 Anxiety

Depression

Negative self SLE

FMF

Somatization

Hostility

GSI

Control

Figure 2 BSI scores at psychopathological levels in adolescents with SLE and FMF, and in the control group.

made you feel in this process?”) approached significance (p = 0.051). The correlations among SMILEY© domain scores of adolescents, HRQL (total SMILEY© score), PGA, CHAQ, SLEDAI and DD in the SLE group, are shown in Table 2. HRQL strongly correlated with the limitation, social, effect on self scores and moderately correlated with burden of SLE. CHAQ inversely mildly correlated with the effect on self and total HRQL. There was no correlation between PGA and SMILEY© parent scores, and DD and SMILEY© parent scores. There was no significant relationship between the SMILEY© scores of parents and BSI scores of adolescents with SLE (p > 0.05). For SLE patients, moderate correlations were detected between SMILEY© adolescent and parent limitations scores (rs = 0.59), effect on self scores (rs = 0.66), burden of SLE scores (rs = 0.56) and total SMILEY© score (rs = 0.65), whereas no correlation was found for the social domain. Statistically significant relationships were not detected between school attendance and SMILEY© adolescent and parent limitation scores, PGA, SLEDAI and CHAQ. Somatization was significantly related with DD in patients with SLE (p = 0.023). Median DD was calculated as 2.5 years in adolescents whose somatization scores were not at a psychopathological level, whereas it was 5 years in adolescents with psychopathological somatization scores. In the FMF group, no correlation was detected between global QL and CDS perceptions of adolescents. A moderate correlation was found between CDS perceptions of adolescents and parents (rs = 0.59). DD did not correlate with global QL and CDS perceptions of adolescents, but inversely correlated with parents’ global QL (rs = –0.54) and CDS (rs = –0.51) perceptions. In the control group, significant relationships were detected between family relationships and depression (p = 0.003) and somatization (p = 0.02). Relationships

between school attendance and psychopathological symptoms could not be analyzed because all controls were attending school.

Discussion There are three main findings from this study. Firstly, FMF patients perceived their global QL to be better than those of healthy adolescents, whereas SLE patients had the lowest global QL. The course of the disease may be the main determinant in affecting the perception of patients with chronic illnesses. The cause for enhanced QL in adolescents with FMF may be due to the relief of anguish they had suffered during their short-lived but severe attacks. Of course, the global QL of FMF patients who do not respond to treatment and continue to have attacks are expected to be poor however, only the responders were included in this study. Nevertheless, the relative content of these FMF patients reflect that the concept of a lifelong disease and requirement of continuous medication do not have a major effect on their well-being. The global QL perceptions of adolescents with SLE were the worst, most likely due to the chronic course of the illness and the side effects of treatment resulting in an awareness of their limitations. The phase of life may be another determinant of global QL (27). In adolescence, many developmental changes occur and healthy adolescents may exaggerate youth problems because of not being exposed to excessive adversity. It is uncertain how developmental changes affect global QL and HRQL, especially in adolescents with chronic diseases. The findings of this study will help to describe the relation between global QL measures and psychiatric symptoms in adolescents with SLE and FMF, and to analyze the perceptions of parents

Brought to you by | University of Connecticut Authenticated Download Date | 6/12/15 12:06 AM

Düzçeker et al.: Relation between QL, HRQL and psychiatric symptoms in adolescents with SLE and FMF      545 Table 1 Distribution of BSI scores according to different categories of SMILEY© and SLEDAI scores in patients with SLE.     Limitation    Med.    Min.    Max.   Social effects    Med.    Min.    Max.   Effect on self    Med.    Min.    Max.   Burden of SLE    Med.    Min.    Max.   HRQL    Med.    Min.    Max.   SLEDAI    Med.    Min.    Max.  

Anxiety  

Quality of life measures and psychiatric symptoms in adolescents with systemic lupus erythematosus and familial Mediterranean fever.

To describe the relation between global Quality of Life (QL) and psychiatric symptoms in adolescents with systemic lupus erythematosus (SLE) and famil...
642KB Sizes 3 Downloads 0 Views