Quality of Life of Children and Adolescents

Abstract

The objective of this study was to measure level of functioning and quality of life in children and adolescents undergoing psychiatric treatment. The design was prospective, with measurements at baseline, three months, and one year. The setting was a community mental health center. Participants comprised 89 patients, between the ages of 5 and 18, with a variety of diagnoses. The Global Assessment of Functioning Scale, Columbia Impairment Scale, and the Health and Life Functioning Scale were used as outcome measures. Results showed that level of functioning and quality of life significantly improved after three months. However, these variables did not show any further substantial change after one year. The authors conclude that, despite initial improvements, level of functioning may be suboptimal and quality of life measures may identify patients who will require more than “treatment as usual.”

Introduction

Medical research has evolved from measuring symptom reduction as desired outcome to improving level of functioning, and more recently, to enhancing quality of life as a defined goal.¹ Little is known about quality of life in pediatric patients with psychiatric disorders and how treatment impacts this important variable.² Some preliminary conclusions from current research can be drawn, however.

Children with psychiatric disorders have a significantly worse quality of life than children with no disorder.³ Many times, mental illness reduces quality of life more than chronic physical problems.^3,4 Even within general medical conditions, the presence or absence of psychological dysfunction may impact more on quality of life than the medical variables involved.⁵ Most psychiatric illnesses affect quality of life negatively, although individual disorders may impact different domains of functioning in a unique way.⁶ Outside informants, in particular parents, may report on quality of life differently than the patients themselves.^7,8 Despite these recent advances in knowledge, not much is known about quality of life of children and adolescents in community mental health centers and how it is affected by treatment. This study aims to examine level of functioning and quality of life in a group of young patients with different disorders as they receive pharmacological treatment in a community mental health center over a one year period.

Methods

Subjects. Eighty-nine patients, 56 (63%) males and 33 (37%) females, with an average age of 11.8±3.6 years (range: 5–18) were included. Seventy-six patients (85%) were Caucasian and 13 (15%) African-American. They were evaluated between June and November, 2003, and were started in pharmacotherapy for primary diagnoses of disruptive behavior (n=45), depression (n=21), anxiety (n=11), bipolar (n=9), pervasive developmental (n=2), and psychotic disorders (n=1). An average of 1.8 psychiatric diagnoses were present. Three patients had mild mental retardation, and 29 (33%) patients had at least one general medical disorder, most commonly being overweight or obese and asthma. Twenty patients had been psychiatrically hospitalized in the past, while 55 had been in previous outpatient treatment. Seventy-seven patients had an identified mental illness in first- or second-degree relatives. Fifty-one families were receiving medical assistance, while 38 had private insurance.

Figure 1.

FIGURE 1. Level of impairment and quality of life at baseline, three months and one year

GAF = Global Assessment of Functioning (0-100)

CIS = Columbia Impairment Scale (0-52)

HALFS = Health And Life Functioning Scale (0-20)

Measurements. Patients underwent an initial one-hour psychiatric evaluation, including the administration of the Mini International Neuropsychiatric Interview for Children and Adolescents.⁹ Parents filled out the Child/Adolescent Symptom Inventory-IV as part of the evaluation.¹⁰ As measures of functional impairment and of quality of life, parents filled out the Columbia Impairment Scale (CIS) and the Health and Life Functioning Scale (HALFS).¹¹ The HALFS is a 10-point quality of life scale that was designed for use in youth with psychiatric disorders. It has shown acceptable reliability and validity.¹² At three months and at one year, the CIS and HALFS were repeated. The Global Assessment of Functioning scale (GAF/DSM-IV) was completed by the treating psychiatrist, independent of parent rating scales.

Treatment. Initially, the following medications were prescribed (some patients received more than one): stimulants (n=40), non-stimulant anti-ADHD medication (n=10), antidepressants (n=33), atypical antipsychotics (n=13), mood stabilizers (n=3), alpha-2 agonists (n=5), and anticonvulsants (n=1). Pharmacotherapy was subsequently adjusted on clinical grounds: no pre-determined algorithms were followed for any disorder. Patients were seen in follow-up after one month, and then bimonthly, unless otherwise indicated on clinical grounds. Follow-up visits lasted, on average, 15 minutes. Participation in psychotherapy was variable, and no evidence-based psychotherapy was practiced in the clinic in a systematic way.

Statistics. Descriptive statistics are used to describe the samples. Spearman Rank correlations are used to measure correlations between the number of psychotherapy visits and the outcome measures.

Results

At baseline, the Global Assessment of Functioning scale showed moderate symptoms and/or moderate difficulty in at least one area of functioning with a score of 51.1±5.6 (n=89). This was corroborated by a CIS score of 25±9.1 and a HALFS score of 11.1±3.1.

At the three-month follow-up point, 59 (66%) patients remained in treatment. These 59 patients were an average of 11.6±3.6 years old, and consisted of 40 (68%) males and 19 (32 %) females. Seven (17%) were African-American. They had an average of 1.8 psychiatric diagnoses. Two patients had mild mental retardation, and 22 (37%) had a general medical condition.

Thirty-four of the 59 patients (58%) participated in office-based psychotherapy, while six (10%) received family-based in-home therapy. The average number of psychotherapy visits was 4.7±7.1 during the first three months.

After three months of treatment, the level of symptomatology and functioning improved with 17.8% to a GAF score of 60.2±7.8. Level of impairment decreased with 24.4% to a CIS score of 18.9±9.3. Quality of life improved the least with 13.5% to a HALFS score of 12.6±3.0.

There were no significant correlations between the number of psychotherapy visits and any of the outcome measures at the three month time point: with GAF: R -0.13 (p=0.34); with HALFS: R -0.14 (p=0.31); with CIS: R 0.14 (p=0.30). Likewise, there were no significant correlations between the number of psychotherapy visits and the change in these parameters between baseline and three months.

At one year, 35 (39%) of the original 89 patients remained in treatment. These 35 patients were on average 11.3± 3.7 years old, and consisted of 23 (66%) males and 12 (34%) females. Three (9%) were African-American. They had an average of 1.8 psychiatric diagnoses. One patient had mild mental retardation, and 15 (43%) had a general medical condition. Data on psychotherapy participation was not collected during the last nine months. The percentage of patients, at the one-year end point, who had participated in psychotherapy during the first three months was nearly identical (57% office-based and 11% family-based), indicating that psychotherapy did not lead to differential retention during follow-up. After one year of treatment, level of functioning improved minimally compared to the three-month point: GAF score was 61.4±8.0, a 2.0% increase from the three-month score of 60.2. Level of impairment and quality of life showed similar small changes: CIS from 18.9 to 18.4±10.2 (a 2.7% change) and HALFS from 12.6 to 12.9±3.2 (a 2.4% change).

Conclusions

The results of this study need to be interpreted in light of its limitations. The study sample was drawn from one community mental health center and may not generalize to other settings. Patients with heterogeneous conditions were included, and treatment was not controlled. Attrition rate was high. Patients stop treatment for a variety of reasons. Some may drop out because of a significant response, possibly leading to an underestimation of the improvements after one year. Only parent ratings were incorporated to measure changes in level of impairment and quality of life. Because of the wide age range of patients, it was judged to be a more reliable measure than the patients' responses.

To the authors' knowledge, this is the first attempt to document quality of life in pediatric patients treated in a community clinic over an extended period of time. At three months, on average, the second follow-up appointment after the initial evaluation, a significant improvement was apparent. By the clinician's rating (GAF), patients improved from “moderate symptoms or moderate difficulty in at least one area” to “mild symptoms or mild difficulty in at least one area.” The CIS was lowered to 18.9, approaching a score of 15, the threshold for clinical significance.¹¹ Quality of life improved the least. This may not be surprising since it can be assumed that symptoms and functioning may need to be better for some period of time before quality of life improves. It may take time, for example, before a chronically hyperactive and impulsive child is invited to peers' activities once symptoms are under control and the child is less disruptive. Also, academic progress is only formally measured every few months. Much more surprising, however, is the lack of any significant progress over the ensuing nine months. Neither symptoms or functioning, nor quality of life significantly changed. This finding does not appear to be related to attrition of certain demographic or clinical subgroups, since the demographic and clinical composition of the original and endpoint samples appeared to be the same. Several possibilities may explain this further lack of improvement.

Good responders may have dropped out, thereby lowering the observed changes. However, most patients suffered from chronic conditions, were educated about the long-term need for treatment, and most likely would have relapsed upon discontinuation of therapy. Monitoring and treatment may not have been intensive enough. Patients were seen on average bimonthly for approximately 15 minutes, a common standard in many community mental health centers. As was clear in the MTA study, more frequent monitoring and more intensive treatment lead to better results in the treatment of ADHD.¹³ Increased availability of collateral information, improved adherence to pharmacotherapy, better optimization of medications, better management of side effects, and more counseling may be products of frequent visits and may lead to more positive results. It is also possible that adverse psychosocial circumstances provide a ceiling effect in terms of improvement in community clinic populations. Parental psychopathology, poverty, stressful school environments, and a negative peer group may be among these unfavorable circumstances. Some preliminary findings, in adults with schizophrenia and in adults with depressive disorders point to this possibility.^14,15 Even though the study was not designed to measure specific effects, it appears that participation in psychotherapy did not influence the outcome measures. This lack of correlation has been reported previously in an HMO population.¹⁶

Larger studies will need to be conducted to determine the reasons for the stagnation in level of functioning and quality of life. Meanwhile, it appears important to realize that, despite initial improvements, results may be suboptimal and stagnant. Attention to quality of life issues may identify patients who will require more than “treatment as usual.”