ISSN 0017-8748 doi: 10.1111/head.12251 Published by Wiley Periodicals, Inc.

Headache © 2013 American Headache Society

Research Submission Quality of Life and Health-Related Disability in Children With Migraine Gabriela Natália Ferracini, MD; Fabíola Dach, PhD; José Geraldo Speciali, PhD

Objective.—To determine whether migraine interferes with health-related quality of life (HRQL) and the degree of disability caused by this condition in the daily life of children of both genders aged 6-12 years. Background.—Migraine is a chronic disease with recurrent symptoms that lead to a reduction of daily activity during the crises and during the intercritical periods, with an impact on HRQL. Methods.—The sample consisted of 50 children with migraine without aura being treated at a childhood headache outpatient clinic (study group) and 50 children with no history of headache selected at a pediatric outpatient clinic (control group). The Pediatric Migraine Disability Score questionnaire was applied to the study group in order to determine the disability provoked by headache in daily life, and the Pediatric Quality of Life Inventory4.0 was applied to both groups to determine HRQL. Results.—Children with migraine were absent from school activities, did not perform household tasks, and did not participate in leisure activities for 23.9 days, on average, during the last 3 months because of migraine. Disability was absent or mild in 38% of the children, whereas 14% showed severe disability. HRQL was similar in both groups regarding self-evaluation, whereas it was perceived as being worse by the parents of children with migraine. Children with migraine had a worse school and emotional quality of life as determined by self-perception. According to the perception of the parents, children with migraine had a worse general, physical, and psychosocial quality of life. Absenteeism from school activities, household tasks, and leisure was not correlated with HRQL. Conclusion.—Although migraine was a cause of school absenteeism, most of the children with migraine showed little or no disability regarding daily life activities and their quality of life was similar to that of children without headache. Key words: headache, child, quality of life, migraine Abbreviations: CG control group, CI confidence interval, HRQL health-related quality of life, PedMIDAS Pediatric Migraine Disability Score, PedsQL 4.0 Pediatric Quality of Life Inventory 4.0, SD standard deviation, SG study group (Headache 2014;54:325-334)

Headache is the most common cause of pain in childhood, with a high risk of becoming chronic and persistent during adulthood.1 The estimated prevalence of childhood headache is 58.4%, with migraine accounting for 7.7-9.7% of cases. Migraine is more frequent among boys up to 7 years of age; from 7-11 years, the frequency is the same for both genders and, after 11 years of age, migraine predominates among

From the Department of Neurosciences and Behavioral Sciences, Faculty of Medicine of Ribeirão Preto (FMRP-USP), Ribeirão Preto, SP, Brazil (G.N. Ferracini), J.G. Speciali; Headache Outpatient Clinic of the University Hospital of Ribeirão Preto (FMRP – USP), Ribeirão Preto, SP, Brasil (F. Dach). Address all correspondence to J.G. Speciali, Department of Neuroscience and Behavioral Sciences. Hospital of the Faculty of Medicine of Ribeirão Preto, University of São Paulo, Avenida dos Bandeirantes, 3900-14048-900, Ribeirão Preto, SP, Brasil, email: [email protected]

Conflict of Interest: None. Research supported by Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP).

Accepted for publication July 30, 2013.

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326 girls.1 Migraine without aura is the most common type, occurring in about 80% of children with this type of headache.2 The disability caused by migraine during and between crises leads to a reduced participation by the children in family, social, and school activities and to impairment of psychological aspects, generating a negative impact on quality of life.3 Migraine has a greater impact on the quality of life of children than other chronic conditions such as idiopathic arthritis and sickle cell anemia.4 Health-related quality of life (HRQL) comprises the effects of diseases and their treatments on daily life and the personal satisfaction of an individual.5 HRQL is a multidimensional construct that reflects the interaction between the disease and the subjective assessment of the physical, social, and emotional aspects by the patient.6 The impact on HRQL can be evaluated by means of multidimensional instruments that measure the subjective and individual perception (self-report) of physical, emotional, psychological, and social aspects.7,8 The assessment of quality of life in children has particularities that must be considered, ie, the rapid transformations of social and cognitive development and the need to evaluate the responses to specific questionnaires by the child, the parents, or the persons responsible, or both. A generic instrument frequently used for the pediatric population and validated for the Brazilian population9 is the Pediatric Quality of Life Inventory (PedsQL 4.0),8 which analyzes the perception of the child and his parents regarding the disease. The PedsQL 4.0 has been used to assess the quality of life of children and adolescents with cancer, rheumatologic diseases, diabetes mellitus, and orthopedic conditions.8 The frequency of headache affects the life of children in various ways, including school absenteeism and reduced school performance, reduced family life, and reduced socialization. This impact can be determined by using a specific instrument for the measurement of the disability caused by migraine in the life of children denoted Pediatric Migraine Disability Score (PedMIDAS),10,11 which assesses the degree of

February 2014 disability (from absent to severe) regarding school, leisure, and family activities. Despite the high prevalence of migraine, few studies have assessed HRQL in children with this problem. Using the PedsQL 4.0, Powers et al (2003)12 evaluated 572 children and adolescents with headache (migraine in 85% of them) and compared them to healthy children and to children with rheumatologic conditions and cancer. The authors observed that children with headache had a poorer HRQL than healthy children, but their HRQL was similar to that of children with the other conditions evaluated, as perceived by the children themselves and by their parents. Later, in 2004, the same authors6 observed that children with migraine had a worse general, social, and school HRQL than healthy children. Kernick et al,13 applying the PedMIDAS and PedsQL 4.0 instruments to 1037 adolescents aged 12-15 years, concluded that school loss, failure to perform household tasks, and to engage in leisure activities because of headache was directly related to HRQL, ie, children with the highest rates of absenteeism regarding daily activities had a worse quality of life. In view of the scarcity of observational studies about the consequences of migraine for the childhood population, the objective of the present study was to assess the disability caused by this condition in the daily life of children and to determine whether it affects HRQL.

CASES AND METHODS The study was conducted on 100 children (68 girls and 32 boys) aged 8-12. The children were divided into 2 groups of 50 subjects each: (1) study group (SG) consisting of children with a diagnosis of migraine without aura according to the second edition of the International Classification of Headache Disorders,14 with at least 2 seizures per month, selected at a tertiary outpatient clinic for children with headache, and (2) control group (CG) consisting of children with no history of headache for at least 6 months selected at a tertiary outpatient clinic of the same hospital who were followed up medically but had no problems of health, growth, or development. The children of the 2 groups were matched for

Headache gender, and their mean age was 9.9 (standard deviation [SD] 1.6) years for SG and 9.0 (SD 1.4) years for GC. Children under treatment for other chronic diseases that would cause important impairment of HRQL, such as rheumatoid arthritis, asthma, or chronic lumbar pain and children who would not understand what was being explained to them or who refused to participate, were excluded from the study. After the visit held in the above outpatient clinics, the parents or persons responsible for the children who fulfilled the selection criteria were invited to participate in the study. Patient selection was sequential. In the SG, none of the children was recruited in a first visit because they were all under prophylactic treatment for migraine. CG children were selected after pediatric medical evaluation by the pediatrician responsible for the outpatient clinic. The pediatrician first selected children who had no disease that might compromise growth and development, and these children were then sent to a room where the investigator in charge determined whether the child was eligible for study using the same selection criteria as those for the SG, except that the children had no headache. Approximately 400 children with headache passed through the outpatient clinic over a period of 12 months. Fifty of these who fulfilled the inclusion and exclusion criteria were selected, ie, we excluded children seen at first visit, those younger than 8 years and older than 12 years, and those with some comorbidity. The local Research Ethics Committee approved the study. An informed consent term was read to the children and their parents or persons responsible, and the latter were asked to sign it if they agreed. Children older than 10 years who understood the information regarding the study signed a specific informed consent term for their ages (term of agreement). All procedures were held in a closed room in the presence of the parents or persons responsible according to the same sequence for all participants. The PedMIDAS10 questionnaire validated for the Brazilian population11 was applied to the SG in order to assess the degree of disability related to headache. The PedMIDAS is a specific tool for children with

327 headache that analyzes the disability caused by headache in the daily routine, especially in school. This tool contains 6 questions related to days of partial or total loss in the last 3 months regarding 3 activities: school activity and performance, household tasks, and leisure.The final result corresponds to the sum of days lost regarding the 3 activities and classifies disability as low or absent (grade I) for values of less than 10 points, mild (grade II) for values of 11-30 points, moderate (grade III) for values of 31-50 points, and severe (grade IV) for values higher than 50.15 HRQL was evaluated using the PedsQL 4.08 questionnaire validated for the Brazilian population9 both in the version for parents and for children when administered to a population of children with rheumatologic diseases. The PedsQL questionnaire was developed for the determination of HRQL in children and adolescents, containing the types of approach of both generic questionnaires and questionnaires directed at specific diseases.8 The instrument consists of 23 items divided into 4 aspects: physical (8 items), emotional (5 items), social (5 items), and school (5 items) aspects. The instrument includes self-assessment for children and adolescents aged 5-18 years and 4 questionnaires for the parents according to child age as follows: 2-4 years (preschool age), 5-7 years (small children), 8-12 years (children), and 13-18 years (adolescents), evaluating the perception of the parents regarding the HRQL of children or adolescents.8,9 The answers to the questions are graded from 0-5 (never, almost never, many times/frequently, almost always) regarding the last month of the child’s life. The questions ask to what extent each item was a problem during the last month, and the replies are given using a 5-level scale (0 = it is never a problem; 1 = it is almost never a problem; 2 = sometimes it is a problem; 3 = it is frequently a problem; 4 = it is almost always a problem). The items are scored inversely and linearly transposed to a 0-100 scale, where the highest values indicate a better HRQL. The values of each dimension are summed and divided by the number of items, and the psychosocial health score (15 items) is calculated as the sum of the items on the scales of the emotional, social, and school dimensions divided by the number of items.8,9

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February 2014

The questionnaire was separately administered on the same day to the children and to the parents or persons responsible in the form of an interview held by 1 of the authors (G.N.F.). The Mapi Research Institute authorized the use of the PedsQL 4.07 for academic nonprofit purposes. Statistical Analyses.—This study is a part of a major study, and the sample size was calculated based on the variable used in the other part (pressure pain threshold). The test indicated to achieve a minimum sample size of 30 individuals in each group, taking in to account the confidence interval (CI) of 95% and the sample power of 80%. Data were analyzed with the SPSS software (version 16.0; SPSS, IBM, Armonk, NY, USA). A normal distribution of quantitative data was assessed by means of the Kolmogorov–Smirnov test (P > .05). Descriptive statistics and the paired Student t-test were applied for analysis of the PedMIDAS data, and 1-way analysis of variance was used to compare the quality of life between groups and between genders with the level of significance set at 5%. The Spearman correlation coefficient (ρ) was used for the values of the PedMIDAS and of the PedsQL 4.0 and to determine the correlation between the PedsQL 4.0 applied to the children and to the parents.

RESULTS The mean time since the diagnosis of migraine was 5.2 (SD 2.5) years for girls and 4.8 (SD 2.5) years for boys. The mean frequency of crises was every 5.1 (SD 2.5) days and the mean time of ambulatory treatment was 4.9 (SD 2.5) years. No child had pain at the time of evaluation, and the mean intensity of pain over the last 3 months was 9.2 (SD 0.8). According to the PedMIDAS, the children with migraine lost, on average, 23.9 days (SD 23.7) over the last 3 months regarding school activity and performance, household tasks, and leisure. Boys lost, on average, 13 days (SD 26.3) and girls lost 15 days (SD 22.4), with no difference between genders (95% CI [−14.0 to 16.6]; P = .86). Regarding absenteeism from school due to some intervening reason14 (questions 1 and 2, respectively), the children with migraine lost, on average, 3.5 full days (SD 6.3) and 4.9 partial days (SD 7.7). Girls lost, on average, 5.0 full days (SD 4.5) and 3.6 partial days (SD 5.4), and boys lost, on average, 6.2 full days (SD 8.4) and 7.5 partial days (SD 10,9), with no difference between genders (95% CI [−10.0 to 5.7]; P = .09) (Table 1). Presenteeism, which represents a situation in which the children go to school but do not show a

Table 1.—Mean, Standard Deviation, and P Value for the Score of the PedMIDAS Questionnaire of the Study Group According to Gender

Questions

1. Over the last 3 months, how many full school days did you miss because of headache? 2. Besides the full days you missed over the last 3 months, on how many days did you miss half the classes because of headache? 3. Besides the school days or the classes you missed over the last 3 months, on how many days were you unable to do even half of what you normally do in school because of headache? 4. On how many days were you unable to carry out activities at home because of headache (eg, household tasks, homework)? 5. On how many days were you unable to participate in other activities due to headache (eg, playing, going out on the street, practicing sports, etc)? 6. Besides the days when you did not participate in the activities listed in the previous question, on how many days did you participate but were unable to do even half of what you are able to do? F = female; M = male; SD = standard deviation.

Gender

Mean (SD)

F M F M F M F M F M F M

5.0 (4.5) 6.2 (8.4) 3.6 (5.4) 7.5 (10.9) 6.8 (10.1) 7.5 (3.7) 11.6 (19.9) 3.0 (3.7) 1.4 (2.6) 2.0 (2.4) 1.3 (3.8) 0.3 (0.8)

P-value

.09 .10 .09 .09 .45 .33

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Table 2.—Mean, Standard Deviation, and P Value for the Score of the Generic Questionnaire PedsQL 4.0 for Children’s Self-Evaluation and of the Questionnaire Applied to the Parents/Persons Responsible for the Children of the Study and Control Groups

Study Group (n = 50)

Scales

Evaluation of the children Total score Physical health Social Emotional health School Psychosocial health Evaluation of the parents Total score Physical health Social Emotional health School Psychosocial health

Control Group (n = 50)

Domains

Mean

SD

Mean

SD

P value

23 8 5 5 5 15

61.4 69.7 80.0 55.0 50.0 68.0

12.4 12.4 20.5 20.2 18.8 17.6

64.5 70.2 80.0 60.0 52.5 58.0

10.8 15.4 21.1 20.5 18.6 16.6

.18 .17 .72

Quality of life and health-related disability in children with migraine.

To determine whether migraine interferes with health-related quality of life (HRQL) and the degree of disability caused by this condition in the daily...
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