Spanish Journal of Psychology (2014), 17, e108, 1–9. © Universidad Complutense de Madrid and Colegio Oficial de Psicólogos de Madrid doi:10.1017/sjp.2014.101

Health-Related Quality of Life and Social Support in Adolescents with Type 1 Diabetes Luciana Cassarino-Perez and Débora Dalbosco Dell’Aglio Universidade Federal do Rio Grande do Sul (Brazil)

Abstract.  This study investigated the correlations between health-related quality of life and social support in adolescents with type 1 diabetes (T1DM). Participants were 102 adolescents between 12 and 17 years old, who were patients of a healthcare program in the city of Porto Alegre, south of Brazil. Two questionnaires, the KIDSCREEN-52 and the Brazilian version of Social Support Appraisals, were used to evaluate health-related quality of life and social support. Results showed good quality of life and social support levels. Strong correlations were verified between social support and three of the KIDSCREEN-52 dimensions: psychological well-being (r = .63; p < .01); peers and social support (r = .67; p < .01) and school environment (r = .64; p < .01). Analysis of linear regression showed that gender, age and social support are variables associated with health-related quality of life, explaining 52.6% of variance. Results revealed the impact of the disease to young people, and can help to find strategies to improve care in these cases. Received 9 July 2013; Revised 24 April 2014; Accepted 11 June 2014 Keywords: adolescence, type 1 diabetes, health-related quality of life, social support.

Diabetes mellitus currently ranks among the most serious health problems worldwide, affecting approximately 382 million people (IDF Diabetes Atlas, 2013). In Brazil, there are approximately 12 million people affected by diabetes mellitus (Brazilian Diabetes Society Sociedade Brasileira de Diabetes, 2012). A study carried out in 2006 in the United States, estimated a prevalence of 1.82 cases of type 1 diabetes mellitus (T1DM) for each 1000 youths between the ages of 0 and 20 (SEARCH for Diabetes in Youth Study Group, 2006). In patients between the ages of 10 and 19 years, prevalence was found to be 2.8 for every 1000, and in children, less than one (0.79) for every 1000 children. This data indicates the paediatric age as the peak period for the start of T1DM, demonstrating the importance of studying the disease during an infancy and teenage context (Chiarelli, Giannini, & Mohn, 2004). The consequences and impact of T1DM during adolescence has been subject of much research. Studies indicate that the typical age transitions interact with the requirements of the treatment for the disease. The adolescents that have to live with the limitations of their chronic condition (Oliveira & Gomes, 1998) consider themselves different to other adolescents of the same age (Damião & Pinto, 2007) and generally demonstrate a greater level of risk behaviour than their healthy counterparts (Miauton, Narring, & Michaud, 2003). In this adverse context, the support of the social Correspondence concerning this article should be addressed to Luciana Cassarino-Perez. Rua Antônio Costa, 90. Vista Alegre. 80820–20. Curitiba (Brazil). Phone: +55–4199161999. E-mail: [email protected]

network is indispensable to obtain compliance with the treatment and face the disease. Research carried out in the context of adolescents with T1DM emphasize the importance of support from the family (Jaser & Grey, 2010; Mackey et al., 2011), health care staff and friends (Karloss, Arman, & Wikblad, 2008) for the adolescent's well-being and metabolic control. Social support has an impact on the treatment of the adolescent with diabetes, seeing that the more they feel support for them, the greater their level of adjustment will be, the lower the manifestation of depression will occur and they will experience a better quality of life (Elmaci, 2006). Quality of life, for the most part, refers to the level of health perceived by the individual himself (García-Viniegras, 2008). It is a multidimensional concept, which consists of four main aspects: physical, psychological, social and environmental. Studies that assume this overall definition generally include healthy persons in their sample universe and do not take into account the quality of life for people who have specific health problems (Seidl & Zannon, 2004). To this end, the term quality of life relating to health was defined, referring to the aspects of a person’s life that are affected by the changes brought on by illness (Cleary, Wilson, & Fowler, 1995). With regards to health related quality of life in adolescents with T1DM, recent studies have shown that the degree of perceived health tends to decrease, as does metabolic control, with an increase in age (Gaspar & Matos, 2008; Guedes, Astudillo, Morales, Vecino, & Júnior, 2010; Seiffge-Krenke, Laursen, Dickson, & Harlt, 2013). As with age, gender is also referred as a determining factor for the quality of life of

2  L. Cassarino-Perez & D. Dalbosco Dell’Aglio adolescents with diabetes, and usually boys perceive their state of health in a more positive way to girls (Grey, Boland, Yu, Sullivan-Bolyai, & Tamborlane, 1998). Variables such as the time since diagnosis and the number of hospitalizations, which are considered risk factors, may also influence the health-related quality of life (Heleno, Vizzotto, Mazzotti, Cressoni-Gomes, & Modesto, 2009; Liss et al., 1998). During a review study, Novato and Grossi (2011) identified six main factors that played a role in health related quality of life in adolescents with T1DM: sociodemographic factors, psychosocial aspects, T1DM treatment, family relationships, metabolic control and hyperglycemia. The author's findings also showed that health related quality of life is not controlled by biological factors alone and that patient treatment should encompass social, psychological and assistance aspects, among others. Understanding which aspects contribute towards the improvement of health related quality of life in adolescents with T1DM allows for the elaboration of support strategies for managing the disease. As such, the overall objective of this study was to test the hypothesis that the social support perception by adolescents with T1DM, largely explains healthrelated quality of life perception. Specific objectives were: (a) map health-related quality of life perception in adolescents with T1DM; (b) identify correlations between the different dimensions that make up healthrelated quality of life, including the gender and agegroup variables; (c) map social support perception by adolescents with T1DM; (d) identify correlations between the dimensions that make up health-related quality of life and social support perception; and (e) investigate the relation between health-related quality of life and social support through linear regression analysis.

Table 1. Sociodemographic Characteristics of the Participants f (%) Age

Gender Number of brothers

Parent's marital status Education Number of hospitalizations

Time since diagnosis

Initial Adolescence   (12 to 14) Final Adolescence   (15 to 17) Female Male None One to three Three or more Married Divorced/Separated Basic Education Secondary Education None Once Twice Three times Four to ten times More than ten times 1 month to 5 years 5 to 10 years 10 to 15 years

48 (47.1) 54 (52.9) 56 (54.9) 46 (45.1) 13 (12.7) 78 (76.5) 11 (10.8) 65 (63.7) 37 (36.3) 59 (57.8) 43 (42.2) 20 (19.6) 39 (38.2) 16 (15.7) 11 (10.8) 14 (13.7) 2 (2.4) 42 (41.2) 44 (43.1) 16 (15.7)

Grande do Sul. Guardians were requested to sign a free and informed consent form and adolescents were requested to sign a term of agreement. Instruments were applied individually in the waiting room used for routine appointments and took on average 20 minutes to conclude. Instruments Sociodemographic data form

Method Participants One hundred and two (102) adolescents with T1DM between the ages of 12 and 17 took part in this study (M = 14.44; SD = 1.63), of which 46 were boys (45.1%) and 56 were girls (54.9%). The participants were all patients at a specialized attending centre for children and adolescents with diabetes in Porto Alegre, in the south Brazil. To take part, an adolescent needed to be undergoing treatment for more than six months and not have any cognitive difficulties that could interfere with understanding the instruments. The sociodemographic characteristics of the participants can be seen in Table 1. Procedures The research project was approved by the Research Ethics Committee of the Federal University of Rio

To register data regarding family household, living arrangements, time since diagnosis, number of hospital admittances, education, among other things. KIDSCREEN-52 A questionnaire developed in Europe (The KIDSCREEN Group Europe, 2006, validated for use in Brazil by Guedes & Guedes, 2011) to evaluate health-related quality of life in children and adolescents. It consists of 10 dimensions (physical well-being, psychological well-being, moods and emotions, self-perception, autonomy, parent relations and home life, financial resources, peers and social support, school environment, bullying), which contain questions that should be answered on a Likert scale varying between 1 (no/ never) and 5 (always/frequently). The instrument generates scores that vary between 0 and 100 for each dimension and as such, the higher the score, the better

Life quality and social support in T1DM adolescents  3 the assessment made by the adolescent regarding that aspect, except for the dimension “bullying”, in which the relationship is the opposite and the lower the scores, the higher the health-related quality of life. Studies have used the shorter version of the instrument, KIDSCREEN-10, to obtain total scores for healthrelated quality of life, which consists of 0 to 50 points. The shorter Portuguese version showed a good internal consistency reliability of .78. Social Support Appraisals (SSA; Vaux et al., 1986) The participant should rate statements relating to his/ hers social support network ranging between “completely agree” and “completely disagree”. The scale divides social support into four factors: friends; family; teachers and others. The total score may vary between 30 and 180 in which the higher the score, the better the assessment made by the adolescent regarding his/hers support network. It is also possible to add points according to sub-scales. We used the Brazilian version of this instrument, which has shown a good internal consistency with a Cronbach’s Alpha of .74 (Squassoni & Matsukura, 2014). Data analysis Initially, a descriptive analysis of the data was carried out to obtain a general profile of the sample. T-tests were carried out to compare health-related quality of life averages between groups and measure interaction according to gender, age and social support. To evaluate the correlation between the scores of the KIDSCREEN-52 and the Brazilian Version of Social Support Appraisals, Pearson's correlation coefficient (r) was used. Finally, a linear regression analysis was carried out to study the association between health-related quality of life and social support, taking into account gender and age in the regression model. Results Health related quality of life – KIDSCREEN The instrument presented desirable psychometric characteristics for most of the KIDSCREEN-52 and KIDSCREEN-10 dimensions, as can be seen in Table 2, except for the self-perception dimension, which was not used in later analyses due to its unacceptable alpha value. The score obtained by adolescents with T1DM in each of the dimensions varied between M = 65.06 (SD = 11.98) and M = 90.52 (SD = 14.84), in which the lowest score obtained was for the physical well-being dimension and the highest was for bullying. In gender and age group analyses (Table 3), significant differences between genders were observed for five of the KIDSCREEN dimensions, with lower averages for

Table 2. KIDSCREEN-52 Psychometric Data for each dimension and KIDSCREEN-10

Physical well-being Psychological well-being Moods and Emotions Self-perception Autonomy Parent relations/home life Financial resources Peers and social support School Environment Bullying KIDSCREEN-10

M

SD

Variance

α

64.75 77.58 76.67 74.43 78.62 78.03 68.23 79.77 73.07 90.52 38.41

15.11 15.30 15.85 13.96 16.40 17.53 21.16 14.92 15.93 14.84 5.879

228.35 234.13 251.21 194.90 269.14 307.44 448.12 222.71 254.05 220.40 34.56

.71 .86 .85 .56 .80 .86 .83 .78 .82 .80 .79

girls, although the highest scores for the physical wellbeing dimension were attributed to the boys. With regards to the age group, a significant difference was observed in the dimensions of autonomy, financial resources and peers and social support, with lower averages occurring in the 15 to 17 years age group. Analyses (t-tests) were also carried out taking time of diagnosis and the number of hospitalizations into account but no significant differences were verified. Social Support Appraisals The instrument presented a satisfactory internal consistency (α = .90), in which internal consistency for the subscales was .78 for family, .89 for friends, .73 for teachers and .70 for others. The general average for SSA was 148.05 (SD = 17.01), which varied between 108 and 180 points. For the sub-scales, the average scores were 41.96 (SD = 5.85) for family, 35.83 (SD = 6.16) for friends, 29.16 (SD = 4.15) for teachers and 38.34 (SD = 5.9) for others. Table 3 also shows the total score and sub-scale score averages of the SSA ( family, friends, teachers and others) according to gender and age group. The only significant difference observed was in age group, for the dimensions friends and others, and at the end of the SSA, in which younger adolescents obtained higher scores. Correlations between variables Within the sociodemographic characteristics studied, age and the number of hospitalizations showed significant negative correlations, although weak, with health-related quality of life dimensions. The age variable showed a negative correlation between the autonomy (r = –.20; p < .05); financial resources (r = –.19; p < .05) and peers and social support (r = –.23; p < .05) dimensions. The dimensions moods and emotions (r = –.26; p < .05); financial resources (r = –.28; p < .01) and school environment (r = –.22; p < .05) correlated with the number of hospitalizations.

4  L. Cassarino-Perez & D. Dalbosco Dell’Aglio Table 3. Results of the Instruments by Gender and Age Boys M KIDSCREEN Health Feelings Emotions Auton/Time Family Financial Aspects Friends School Env. Prov/Bullying SSA Family Friends Teachers Others Total

Girls SD

M

SD

t

70.61 79.78 81.99 82.86 82.10 73.04 81.95 73.04 90.58

12.28 14.84 12.18 12.12 13.81 17.27 12.75 6.22 14.98

59.93 75.77 72.30 75.14 74.70 64.28 77.97 73.09 90.47

15.60 15.56 17.22 18.61 17.58 23.31 16.38 15.85 14.87

3.86** 1.32 3.32** 2.52** 2.23* 2.17* 1.38 –.01 .03

42.52 36 30.71 38.26 147.50

5.38 6.14 5.53 5.17 16.45

41.50 35.70 31.14 38.41 146.75

6.22 6.22 6.18 5.59 19.62

.87 .24 .36 –.13 .20

Age Group 1

Age Group 2

M

M

SD

SD

t

67.33 80.21 78.27 83.33 78.26 74.72 83.12 75.62 89.58

13.86 16.10 15.14 14.22 19.10 17.28 12.80 14.46 16.32

62.44 75.25 75.24 74.44 77.84 62.47 76.80 70.80 91.35

15.91 14.28 16.46 17.20 16.20 22.73 16.12 15.25 13.50

1.65 1.64 .96 2.82** .12 3.08** 2.18* 1.53 –.60

42.22 37.58 31.64 39.70 151.17

5.40 4.45 6.80 4.98 16.52

41.72 34.27 30.33 37.13 143.46

6.26 7.02 4.90 5.84 18.94

.43 2.86** 1.1 2.38* 2.20*

Note: *p < .05; **p < .01.

Significant negative correlations were observed between age and the total SSA score (r = –.22; p < .05), the friends sub-scale (r = –.29; p < .01) and the others sub-scale (r = –.21; p < .05). Furthermore, a significant positive correlation was found to exist between the SSA results and KIDSCREEN-10 (r = .68; p < .01), which showed that the higher the perception of social support, the better the health-related quality of life; and between the social support and all KIDSCREEN-52 dimensions. The strongest correlations were verified between social support and the dimensions psychological well-being (r = .63; p < .01); peers and social support (r = .67; p < .01) and school environment (r = .64; p < .01). Association between health-related quality of life and social support A linear regression analysis was carried out with healthrelated quality of life perception as the outcome variable. The first model tested included gender and age as

independent variables (Table 4). Both independent variables of this model showed significant relationships with the outcome variable, which explained 9.3% of its variance (adjusted R²), with boys and younger adolescents having a better perception of health-related quality of life. In the second model tested, social support perception was added (Table 4). This model explained 52.6% of the variance (adjusted R²), therefore resulting in an increase (Δ R²) of 0.430 in relation to the previous model. In model 2, social support (β = 0.671) and gender (β = –0.262) showed significant associations to the outcome variable, indicating that boys and those with a greater perception of social support were associated with a greater perception of healthrelated quality of life. Discussion This study allowed health-related quality of life and social support perception aspects of adolescents with

Table 4. Results of Linear Regression for Health-related Quality of Life

Model 1

Model 2

B

SE

β

p

R² (adjusted R²)

(Constant) Gender Age

46.714 –3.219 –2.168

2.468 1.114 1.111

Health-related quality of life and social support in adolescents with type 1 diabetes.

This study investigated the correlations between health-related quality of life and social support in adolescents with type 1 diabetes (T1DM). Partici...
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