Abstract

This study aimed to analyze the scientific literature on health-related quality of life (HRQOL) of adolescents with type 1 diabetes mellitus. This is an integrative review whose inclusion criteria were full-text papers available online in Portuguese, English and Spanish; published and indexed in databases Lilacs, Medline, Adolec, BDENF, in the period 2003-2013 that reflected the theme HRQOL, Type 1 diabetes and adolescents. Twenty-two papers were analyzed, from which the following themes were retrieved: development and validation of tools to measure the HRQOL of diabetic adolescents; HRQOL of adolescents with diabetes; factors affecting the quality of life of adolescents with diabetes and resources used to assist adolescents in diabetes management. The HRQOL of adolescents with diabetes has been a widely studied and disseminated topic in international literature, but has poorly echoed in Brazil. Studies published in international journals in English predominated. Thus, we emphasize the importance of conducting research of this nature in Brazil, since the measurement of HRQOL of diabetic adolescents may help the multidisciplinary team in care planning.

Quality of Life; Type 1 diabetes mellitus; Adolescent

Introduction

The concept of quality of life (QoL) has been the focus of many studies in the last decades, in different areas of knowledge, and has received different connotations depending on the time and context in which it has been used. Initially, this concept was related to the purchasing power and life conditions it provided. However, with the advancement of research, this approach became insufficient for such an evaluation¹1. Organização Mundial de Saúde (OMS). Cuidados inovadores para condições crônicas: componentes estruturais de ação: relatório mundial. Genebra: OMS; 2002..

Since the 1950s, with increased life expectancy of the population because of the progress of science and the survival of patients with chronic diseases, this concept was modified and expanded, and QoL began to be conceived by individuals in relation to their health condition, as well as to other realms of their life¹1. Organização Mundial de Saúde (OMS). Cuidados inovadores para condições crônicas: componentes estruturais de ação: relatório mundial. Genebra: OMS; 2002.. In this context, the Quality of Life Group of the World Health Organization (WHO) conceptualizes quality of life as the individuals’ perception of their own life condition, within their own context of culture and value system, considering their life goals, expectations and concerns²2. The Whoqol Group. The World Health Organization Quality of Life assessment (WHOQOL):position paper from the World Health Organization. Soc Sci Med 1995; 41(10):1403-1409..

Health-related quality of life (HRQoL) refers to individuals’ perception of their life condition in the face of the disease and the consequences and treatments related to it, i.e. how the disease affects their life condition. Measuring this perception is very subjective, because of individuals’ difficulty in relating their dysfunction to the multiple realms of their life³3. Queiroz FA, Pace AM, Santos CB. Adaptação cultural e validação do instrumento diabetes - 39 (d-39):Versão para brasileiros com diabetes mellitus tipo 2 – Fase. Rev Latino-am Enfermagem 2009; 17(5):708-715..

Chronic diseases affect the individuals’ QoL the most, because they permanently interfere with their lifestyle and limit their productive capacity and worldview. In this context, diabetes mellitus (DM) is one of the diseases that impacts individuals’ QoL the most, since therapy requires a radical change in their lifestyle and that of their family, due the need to maintain metabolic control in the ideal parameters. Thus, they must change their diet, physical activity, daily insulin injections and consultations with the endocrinologist to adjust the doses. This routine causes sadness, anxiety and frustration³3. Queiroz FA, Pace AM, Santos CB. Adaptação cultural e validação do instrumento diabetes - 39 (d-39):Versão para brasileiros com diabetes mellitus tipo 2 – Fase. Rev Latino-am Enfermagem 2009; 17(5):708-715..

When DM occurs in adolescence, the individual has to address age-related conflicts and must learn to deal with the disease, which is an extremely difficult task because it requires adolescents’ discipline and change of habits. Thus, the need to change their lifestyle affects their physical, emotional, social condition and therefore their QoL. This problem has drawn the attention of scholars who sought to understand the experience of adolescents with DM1⁴4. Damião EBC, Pinto CMM. “Being transformed by illness”: adolescents’ diabetes experience. Rev latino-am Enfermagem 2007; 15(4):568-574. and the relationship between psychological well-being and the management of this disease⁵5. Helgeson VS, Takeda ABS. Brief Report: nature and implications of personal projects among adolescents with and without diabetes. J Pediatr Psychol 2009; 34(9):1019-1024..

Thus, due to the relevance of this approach and the scarcity of studies in national journals, we asked: “What was produced in scientific journals from 2003 to 2013 in terms of HRQoL of adolescents with DM1? This study aimed to analyze the scientific production on health-related quality of life of adolescents with type 1 diabetes mellitus.

Methods

This is an integrative review, a method by which a phenomenon studied in previous research is analyzed, aiming to understand a certain theme. The study was developed from the following steps: identifying the theme and selecting the research question; establishing inclusion and exclusion criteria; identifying and selecting studies; categorizing selected studies; analyzing and interpreting the results and presenting the knowledge review/synthesis⁶6. Botelho LLR, Cunha CCA, Macedo M. O método da revisão integrativa nos estudos organizacionais. Gestão e Sociedade 2011; 5(11):121-136..

The inclusion criteria previously established by the researchers were papers published from January 2003 to December 2013, available in full online in Portuguese, English and Spanish, published and indexed in Lilacs, Medline, BDENF databases, which portrayed the theme health-related quality of life, type 1 diabetes and adolescents. The exclusion criteria were papers that only had the abstract online, which included other chronic diseases in addition to type 1 diabetes and included other groups, such as children and/or adults and review papers.

Descriptors were also pre-established, starting with access to the Regional Medical Library of the Pan American Health Organization (PAHO/Bireme), Health Sciences Descriptors (DeCS) or Medical Subject Headings (MeSH).

The search for papers was conducted by two researchers between June and August 2014, who used the advanced search of the BVS, cross-referencing descriptors through the Boolean operation. In English, we used Quality of Life AND Diabetes Mellitus AND Adolescent; in Portuguese, Qualidade de Vida AND Diabetes mellitus AND Adolescente, and in Spanish, Cualidad de Vida AND Diabetes Mellitus AND Adolescente.

The first search was performed in the BVS with descriptor Diabetes Mellitus (302,349 papers), and the second one using the Boolean operation AND in the advanced search, cross-referencing descriptors in English Quality of Life AND Diabetes Mellitus AND Adolescent, which returned 983 papers. In the third search, filters were used in order to comply with the inclusion criteria: full-text; database: MEDLINE, LILACS, IBECS, BDENF; main subject: type 1 diabetes mellitus, quality of life; limit: adolescent; languages: English, Spanish and Portuguese; years of publication: from 2003 to 2013; document type: paper, returning 294 papers.

In the advanced search, another search was made with the same descriptors in Spanish and later in Portuguese, which returned 766 and 783 papers, respectively. Next, the use of the same filters returned 245 papers in Spanish and 251 papers in Portuguese.

All findings were compared in order to find duplicated papers that appeared in all three languages and databases. Then, titles and abstracts were read and we excluded those with only abstracts online; those including other chronic diseases, in addition to type 1 diabetes; those including other groups, such as children and/or adults, and review papers, observing the exclusion criteria. Thus, by consensus among researchers and in compliance with the inclusion and exclusion criteria, 22 papers were selected and composed the sample.

In general, the BVS search process was shown briefly in Figure 1. We then proceeded to the critical reading of the studies that composed the sample, and with the help of a form prepared by the researchers themselves, we could extract the most relevant information from the studies, shown in Chart 1.

In the analysis, the relevant data were identified and categorized, using the principles and guidelines of the Thematic Analysis⁷7. Minayo MCS, organizadora. Pesquisa social: teoria, método e criatividade. 29ª ed. Petrópolis: Vozes; 2010.. Thus, initially, a free-floating reading of the collected data was made, considering its “homogeneity, relevance and pertinence”. Then, the significant expressions or words were sorted according to their content, and data were classified and aggregated, defining the empirical categories. Finally, data were interpreted and discussed with the relevant literature.

Results

Chart 1 shows the main data found in the papers that composed the sample, in the following aspects: database, language, type of approach, title, objectives, number of participants, age group, tool/technique to evaluate QoL and main conclusions.

Thus, the study showed that papers published in English (19), in English, Portuguese and Spanish (one), English and Spanish (one) and Portuguese (one) predominated. This proves the scarcity of studies in national journals whose object of study is the QoL of diabetic adolescents.

Most studies (21) adopted the quantitative approach; two of them were randomized, one with a control group, six were QoL tool construction and/or validation and the others were cross-sectional.

Among data collection tools, the most used was the Diabetes Quality of Life – Youth questionnaire (DQoLY), followed by its short form, the Short Form of the Diabetes Quality of Life for Youth (DQLQY-SF). Attention is drawn to the Quality of Life Tool for Young People with Diabetes (IQVJD), derived from Ingerssoll and Marrero’s Diabetes Quality of Life for Youths (DQOLY), adapted and validated for the Brazilian culture by Novato et al.⁹9. Novato TS, Grossi SAA, Kimura M. Instrumento de qualidade de vida para jovens com diabetes (IQVJD). Rev Gaúcha Enferm 2007; 28(4):512-519.. This tool consists of 50 items, distributed in the following areas: “Satisfaction”, with 17 items; “Impact”, with 22; and “Concerns”, with 11. Its use showed adequate psychometric properties to be used in our environment, and it was validated after it was tested in 124 young people with DM1. This is a reliable, valid and specific measure to evaluate the quality of life of young Brazilian diabetics⁹9. Novato TS, Grossi SAA, Kimura M. Instrumento de qualidade de vida para jovens com diabetes (IQVJD). Rev Gaúcha Enferm 2007; 28(4):512-519..

Analysis and discussion

Sample data analysis resulted in the construction of the following themes: construction and validation of tools to measure HRQoL of diabetic adolescents; measurement of the HRQoL of diabetic adolescents; factors that interfere in the QoL of diabetic adolescents and resources used to assist adolescents in managing diabetes.

Construction and validation of tools to measure the HRQoL of diabetic adolescents

The QoL cannot be reliably measured because it is a subjective concept. However, several tools, such as the questionnaires have been elaborated with a view to ensuring reliable data. Self-reporting questionnaires can be selected in three categories: generic; specific realm for a particular disease and with specific realms. Generic questionnaires are used to measure QoL, regardless of any disease; the specific questionnaires for a particular disease are used to measure the consequences of a specific disease for the quality of life of the individual with that disease; and questionnaires with specific realms focus on certain quality of life realms, e.g. physical disabilities³⁰30. Schram MT, Baan CA, Pouwer F. Depression and quality of life in patients with diabetes: a systematic review from the european depression in diabetes (EDID) research consortium. Current Diabetes Reviews 2009; 5(2):112-119..

The proliferation of tools that evaluate the HRQoL stems from the need to show the effectiveness of a particular care or treatment, aiming at a consensus, that is, a same vision around the disease or treatment, or beyond, in order to treat the patient holistically, incorporating the evaluated interventions into the care³¹31. Queiroz FA, Pace AM, Santos CB. Adaptação cultural e validação do instrumento diabetes- 39 (d-39):Versão para brasileiros com diabetes mellitus tipo 2 – Fase. Rev Latino-am Enfermagem 2009; 17(5).. With this objective, studies⁸8. McMillan CV, Honeyford RJ, Datta J, Madge NJH, Bradley NC. The development of a new measure of quality of life for young people with diabetes mellitus: the ADDQoL-Teen. Health Qual Life Outcomes 2004; 2:61.

9. Novato TS, Grossi SAA, Kimura M. Instrumento de qualidade de vida para jovens com diabetes (IQVJD). Rev Gaúcha Enferm 2007; 28(4):512-519.

10. De Wit M, Delemarre-van de Waal HA, Pouwer F, Gemke RJ, Snoek FJ. Monitoring health related quality of life in adolescents with diabetes: a review of measures. Arch Dis Child 2007; 92(5):434-439.^-1111. Novato TS, Grossi SA, Kimura M. Cultural adaptation and validation of the “Diabetes quality of life for youths” measure of Ingersoll and Marrero into Brazilian Culture. Rev Lat Am Enfermagem 2008; 16(2):224-230.^,2424. Wang RH, Lo FS, Chen BH, Hsu HY, Lee YJ. Short form of the chinese version diabetes quality of life for youth scale- a psychometric testing in Taiwanese adolescents with type 1 diabetes. Diabetes care 2011; 34(9):1943-1945.^,2626. De Wit M, Winterdijk P, Aanstoot H, Anderson B, Danne T, Deeb L, Lange K, Nielsen AØ, Skovlund S, Peyrot M, Snoek F; DAWN Youth Advisory Board. Assessing diabetes-related quality of life of youth with type 1 diabetes in routine clinical care: the MIND Youth Questionnaire (MY-Q). Pediatric Diabetes 2012; 13(8):638-646. that established, validated and made available tools to evaluate the HRQoL of diabetic adolescents considering their cultures were found. This is a necessity because tools contain questions that assess relevant aspects that underpin one culture, but which may be very irrelevant in another.

When measuring the HRQoL of a given group, it is practical to use existing tools already validated in another language. However, this is not the most appropriate procedure, since each country has its own culture and some items of a tool may not be adequate for evaluation in another country with a different culture. In addition, translating a tool from one language to another is a challenge, since a single word that has meaning in one language or another may not make the least sense. Thus, before being used, it must be adapted and validated in the language and culture of the country where the research will be conducted³²32. Jalaludin MY, Fuziah MZ, Hadhrami MH, Janet YH Hong, Jamaiyah H, Mohamad Adam B. Reliability and validity of the Malay translated version of diabetes quality of life for youth questionaire. Malaysian Family Physician 2013; 8(1):12-19..

Measuring the HRQoL of diabetic adolescents

Measuring the HRQoL of diabetic adolescents has been the concern of scholars in different cultures¹⁷17. Ingerski LM, Laffel L, Drotar D, Repaske D, Korey K. Correlates of glycemic control and quality of life outcomes in adolescents with type 1 diabetes. Pediatric Diabetes 2010; 11(8):563-571.^,1919. Al-Akour N, Khader YS, Shatnawi NJ. Quality of life and associated factors among jordanian adolescents with type 1 diabetes mellitus. J Diabetes complications 2010; 24(1):43-47.^,2727. Jaser SS, Faulkner MS, Whittemore R, Jeon S, Murphy K, Delamater A, Grey M. Coping, Self-Management, and Adaptation in Adolescents with Type 1 Diabetes. Ann Behav Med 2012; 43(3):311-319.

28. Stahl A, Straßburger K, Lange L, Bächle C, Holl RW, Giani G, Rosenbauer J. Health-Related Quality of Life Among German YouthsWith Early-Onset and Long-Duration Type 1 Diabetes. Diabetes Care 2012; 35(8):1735-1742.^-2929. Guo J, Whittemore R, Grey M, Wang J, Zhou ZG, He GP. Diabetes self-management, depressive symptoms, quality of life and metabolic control in youth with type 1 diabetes in China. J Clin Nurs 2013; 22(1-2):69-79.. In assessing the impact of the disease on the life of adolescents, interventions can be designed to help them adhere to treatment, reduce the possibility of complications and improve the QoL of these individuals.

A study²⁸28. Stahl A, Straßburger K, Lange L, Bächle C, Holl RW, Giani G, Rosenbauer J. Health-Related Quality of Life Among German YouthsWith Early-Onset and Long-Duration Type 1 Diabetes. Diabetes Care 2012; 35(8):1735-1742. with young Germans compared the HRQoL of 11-to-17-year-old type 1 diabetic adolescents with their healthy peers and concluded that those who discovered the disease as early as childhood, when compared to their non-diabetic peers, did not show impaired QoL. This finding is probably due to the process of normalization, common in individuals with a chronic disease who have already experienced the adaptation process, become better acquainted with the disease and conceive it as normal, since it is part of their life and daily routine, so they do not feel different from their healthy peers³³33. Ferreira LE, Zanatta EA, Brum MLB, Snothaft SC, Motta MGC. Diabetes mellitus sob a ótica do adolescente. Cogitare Enfermagem 2013; 18(1):71-77..

The relationship between the values of glycated hemoglobin (HbA1c) and the HRQoL of diabetic adolescents was the objective of studies¹⁷17. Ingerski LM, Laffel L, Drotar D, Repaske D, Korey K. Correlates of glycemic control and quality of life outcomes in adolescents with type 1 diabetes. Pediatric Diabetes 2010; 11(8):563-571.^,1919. Al-Akour N, Khader YS, Shatnawi NJ. Quality of life and associated factors among jordanian adolescents with type 1 diabetes mellitus. J Diabetes complications 2010; 24(1):43-47. that proved the relationship between the best level of HbA1c and the QoL of adolescents. The level of HbA1C is related to adolescent diabetes management, as well as to emotional factors, since stress is a risk factor for hyperglycemia due to the action of hormones that are produced in this condition. In addition, when the adolescent feels good about himself and others, he keeps his self-esteem and looks after himself. This is a way to improve his glycemic level³⁴34. Gomes DM, Espírito Santo PSMF. Experiences and perceptions of teens with type 1 diabetes mellitus. Rev enferm UFPE on line 2015; 9(2):582-591..

In an ethnically diverse group of adolescents with DM1, the relationship between reactivity and coping with stress with self-management, quality of life and metabolic control²⁷27. Jaser SS, Faulkner MS, Whittemore R, Jeon S, Murphy K, Delamater A, Grey M. Coping, Self-Management, and Adaptation in Adolescents with Type 1 Diabetes. Ann Behav Med 2012; 43(3):311-319. was examined. The research showed that there were no significant differences in coping with stress related to age, gender or type of treatment. However, when comparing adolescents with an annual household income of US$ 80,000 with those of lower annual income households of US$ 40,000, the latter had significantly lower levels of primary coping control (p<0.001) (for example, problem solving) and secondary coping control (p < 0.01) (for example, acceptance) and significantly higher levels of coping detachment (p < 0.01) (for example, avoidance). In addition, considering race/ethnicity in relation to coping, it was observed that minority youths reported significantly lower levels of primary coping control (p < 0.001) and secondary coping control (p < 0.05) and higher levels of coping detachment (p < 0.05) than non-Hispanic whites.

There were also differences in a multicenter study²⁹29. Guo J, Whittemore R, Grey M, Wang J, Zhou ZG, He GP. Diabetes self-management, depressive symptoms, quality of life and metabolic control in youth with type 1 diabetes in China. J Clin Nurs 2013; 22(1-2):69-79. performed with 135 Chinese youngsters with DM1, whose objective was to evaluate diabetes self-management, depressive symptoms, quality of life and metabolic control. Regarding glycemic control, it was worse in Chinese girls than in American girls, with 68% of them evidencing 9mg/dl glycated hemoglobin.

A total of 17 (6%) Chinese girls reported high depressive symptoms, correlated with the household’s annual income, school attendance, and peer-to-peer and father-child relationships. The overall mean satisfaction score on quality of life was 17.14 ± 3.58. Thus, the Chinese girls had lower self-management of diabetes and quality of life when compared to American girls, and a higher level of depressive symptoms.

Therefore, assessing the HRQoL of diabetic adolescents is essential to help them manage the disease, and when the therapy is limited to metabolic control, without considering the disease’s impact on the adolescent’s life, psychosocial imbalances compromise adherence to treatment³⁵35. Minanni CA, Ferreira AB, Sant’Anna MJC, Coates V. Abordagem integral do adolescente com diabetes. Revista Adolescência e Saúde 2010; 7(1):45-52..

Factors that interfere in the QoL of diabetic adolescents

The QoL of diabetic adolescents is associated with several factors, so it is the focus of several studies¹²12. Busato MS, Ignácio SA, Brancher JA, Gregio AMT, Machado MAN, Azevedo-Alanis LR. Impact of clinical status and salivary conditions on xerostomia and oral health-related quality of life of adolescents with type 1 diabetes mellitus. Community Dent Oral Epidemiol 2008; 40(1):62-69.

13. Pereira MG, Berg-Cross L, Almeida P, Machado JC. Impact of family environment and support on adherence metabolic control, and anality of life in adolescents with diabetes. Int J Behav Med 2008; 15(3):187-193.

14. Waller H, Eiser C, Knowles J, Rogers N, Wharmby S, Heller S, Hall C, Greenhalgh S, Tinklin T, Metcalfe C, Millard E, Parkin V, Denial M, Price K. Pilot study of a novel educational programme for 11–16 year olds with type 1 diabetes mellitus: the KICk-OFF course. Arch Dis Child 2008; 93(11):927-931.

15. Busato IMS, Ignácio SA, Brancher JA, Gregio AMT, Machado MAN, Azevedo-Alanis LR. Impact of xerostomia on the quality of life of adolescents with type 1 diabetes mellitus. Oral Surg Oral Med Oral Pathol Oral Radiol Endod 2009; 108(3):376-382.^-1616. Olinder AL, Kernell A, Smide B. Missed bolus doses: devastating for metabolic control in CSII-treated adolescents with type 1 diabetes. Pediatr Diabetes 2009; 10(2):142-148.^,1818. Maslakpak MH, Anoosheh M, Fazlollah A, Ebrahim H. Iranian diabetic adolescent girls’ quality of life: perspectives on barriers. Scand J Caring Sci 2010; 24(3):463-471.^,2222. Matziou V, Tsoumakas K, Vlahioti E, Chrysicopoulou L, Galanis P, Petsios K, Perdikaris P. Factors influencing the quality of life of young patients with diabetes. J Diabetes 2011; 3(1):82-90.^,2323. D’hooge R, Hellinckx T, Laethem CV, Dewolf D, Calders P. Influence of combined aerobic and resistance training on metabolic control, cardiovascular fitness and quality of life in adolescents with type 1 diabetes: a randomized controlled trial. Clin Rehabil 2011; 25(4):349-359.. Adolescence is a stage characterized by conflicts, autonomy, immediacy, issues regarding the conduct of parents and other adults and the need to be accepted by the group, which probably hinders diabetic adolescents’ coping with the disease and compromises their condition. Therefore, it is necessary to understand the factors that interfere in the management of DM1 and in the QoL of these adolescents.

In Iran, a survey¹⁸18. Maslakpak MH, Anoosheh M, Fazlollah A, Ebrahim H. Iranian diabetic adolescent girls’ quality of life: perspectives on barriers. Scand J Caring Sci 2010; 24(3):463-471. carried out with female diabetic adolescents sought to understand the barriers that interfere in the QoL of these adolescents. Among them, authors identified social barriers related to family issues, the social perspective on diabetes and school problems; and personal issues that involve negative feelings about treatment and care, the negative effects of diabetes and uncertainty about the future. In addition, the results of the same study indicate that the culture of that country imposes more control and limits on the life of girls, when compared to boys. This condition was an important negative factor on the quality of life of Iranian adolescent girls with DM1.

The perception about how the implications of DM1 may influence the QoL of adolescents seems to be differentiated between female and male. Studies related to the relationship between gender and QoL reveal that females tend to have the worst indicators of QoL when compared with males²²22. Matziou V, Tsoumakas K, Vlahioti E, Chrysicopoulou L, Galanis P, Petsios K, Perdikaris P. Factors influencing the quality of life of young patients with diabetes. J Diabetes 2011; 3(1):82-90.^,2929. Guo J, Whittemore R, Grey M, Wang J, Zhou ZG, He GP. Diabetes self-management, depressive symptoms, quality of life and metabolic control in youth with type 1 diabetes in China. J Clin Nurs 2013; 22(1-2):69-79.^,3636. Novato TS, Grossi SAA, Kimura M. Quality of life and self-esteem of adolescents with diabetes mellitus. Acta Paul Enferm 2008; 21(4):562-567.^,3737. De Wit M, Waal HAD, Bokma JA, Haasnoot K, Houdijk MC, Gemke RJ, Snoek FJ. Self-report and parent-report of physical and psychosocial well-being in Dutch adolescents with type 1 diabetes in relation to glycemic control. Health Qual Life Outcomes 2007; 5:10..

A study²²22. Matziou V, Tsoumakas K, Vlahioti E, Chrysicopoulou L, Galanis P, Petsios K, Perdikaris P. Factors influencing the quality of life of young patients with diabetes. J Diabetes 2011; 3(1):82-90. performed with Greek adolescents of both genders also observed that adolescent girls had a lower rate of satisfaction with their state, with a consequent decreased QoL, when compared with the adolescent boys. Insufficient diabetes control and increased BMI had a negative influence on QoL in this study as they generated emotional disturbances such as anxiety, distress, depression, low self-esteem, anorexia or bulimia, while adequate monitoring of capillary glycaemia and dietary flexibility were related to the highest levels of QoL.

Another study³⁸38. Di Battista AM, Trevor AH, Greco L, Gloizer J. Type 1 Diabetes Among Adolescents Reduced Diabetes Self-Care Caused by Social Fear and Fear of Hypoglycemia. Diabetes Educ 2009; 35(3):465-475. has found similar results regarding anxiety as a common feature among adolescents, which may interfere with treatment adherence and QoL in adolescents with type 1 diabetes. Social stress, common in adolescence, may interfere with the adherence of young people to treatment, and those of less privileged social class are the most susceptible, since they have the worst metabolic control, highest number of hospitalizations and complications resulting from less adaptive coping strategies, therefore, they require more support to create and use them²¹21. Jaser SS, White LE. Coping and resilience in adolescents with type 1 diabetes. Child Care Health Dev 2011; 37(3):335-342.. “The psychological stress can cause the immune destruction of beta cells of the pancreas, causing deficiency in the production of insulin by the organ, which, in this case, must be administered by the patient”. In addition, diabetes is a risk factor for psychiatric disorders in this group³⁵35. Minanni CA, Ferreira AB, Sant’Anna MJC, Coates V. Abordagem integral do adolescente com diabetes. Revista Adolescência e Saúde 2010; 7(1):45-52..

Comparing the QoL of adolescent groups from different cultures was the objective of a multicenter study conducted with 136 Chinese youngsters, which revealed the difference in self-management of diabetes by this group compared to a similar group from the United States of America. This finding was associated with the insulin treatment regimen, the treatment site, and the depressive and gender symptoms. The high rates (17.6%) of depressive symptoms found in the Chinese young girls were related to household income, school attendance, peer-to-peer and father-child relationships. The mean overall satisfaction score with the quality of life of these young girls was 17.14 ± 3.58, and the mean HbA1c, 9.68%²⁴24. Wang RH, Lo FS, Chen BH, Hsu HY, Lee YJ. Short form of the chinese version diabetes quality of life for youth scale- a psychometric testing in Taiwanese adolescents with type 1 diabetes. Diabetes care 2011; 34(9):1943-1945..

The family environment is an essential element in the support to adolescents in the management of diabetes, especially among the less favored social class, whereas metabolic control is more representative in adolescents of the more privileged class¹³13. Pereira MG, Berg-Cross L, Almeida P, Machado JC. Impact of family environment and support on adherence metabolic control, and anality of life in adolescents with diabetes. Int J Behav Med 2008; 15(3):187-193..

In adolescence, it is common for adolescents to want to be independent from their parents. When it comes to those affected by diabetes, they feel frustrated and refuse to adhere to treatment. Thus, overprotection and parental control are related to worse QoL of adolescents, while those who provided positive emotional support with communication skills had better QoL. As can be seen, adolescents from families with less family conflicts report more well-being, and more understanding parents are related to children with better QoL than those with the highest number of authoritarians³⁵35. Minanni CA, Ferreira AB, Sant’Anna MJC, Coates V. Abordagem integral do adolescente com diabetes. Revista Adolescência e Saúde 2010; 7(1):45-52.^,3939. Novato TS, Grossi SAA. Factors associated to the quality of life of adolescents with type 1 diabetes mellitus. Rev Esc Enferm USP 2011; 45(3):770-776..

Investigating the management of continuous infusion of subcutaneous insulin (CSII) in adolescents with type 1 diabetes and its relationship with QoL and treatment satisfaction was the focus of a study²⁵25. Hayes RL, Garnett SP, Clarke SL, Harkin NM, Chan AK, Ambler GR. A flexible diet using an insulin to carbohydrate ratio for adolescents with type 1 diabetes - a pilot study. Clin Nutr 2012; 31(5):705-709. that revealed that a large percentage of adolescents (39%) forget to administer the bolus insulin doses. This fact is directly related to dissatisfaction with the treatment, which therefore affects their life. Therefore, the multi-professional team must empower adolescents and encourage them to use coping measures in the management of the disease.

An essential element in the treatment of diabetes, physical activity was analyzed in a randomized study²³23. D’hooge R, Hellinckx T, Laethem CV, Dewolf D, Calders P. Influence of combined aerobic and resistance training on metabolic control, cardiovascular fitness and quality of life in adolescents with type 1 diabetes: a randomized controlled trial. Clin Rehabil 2011; 25(4):349-359., which evaluated the effect of physical training combined with metabolic control on physical fitness and QoL of adolescents with type 1 diabetes. At the onset of the study, none of the parameters (anthropometric indices, glycaemia and HbA1c) measured differed from the two groups, but the daily doses of injected insulin were significantly reduced in the training group (0.96 IU/kg/day pre- against 0.90 IU/kg/day post, P<0.05), when compared with the control group. In addition, physical fitness greatly increased in the training group, and this has repercussions on improving overall health, vitality and emotional function. Therefore, metabolic control combined with physical training appears to decrease daily insulin requirements and improve physical fitness and well-being. The study also investigated the relationship between one of the symptoms of diabetes, xerostomia and QoL, and concluded that it significantly interferes with the QoL of adolescents with DM1¹²12. Busato MS, Ignácio SA, Brancher JA, Gregio AMT, Machado MAN, Azevedo-Alanis LR. Impact of clinical status and salivary conditions on xerostomia and oral health-related quality of life of adolescents with type 1 diabetes mellitus. Community Dent Oral Epidemiol 2008; 40(1):62-69. ^,1515. Busato IMS, Ignácio SA, Brancher JA, Gregio AMT, Machado MAN, Azevedo-Alanis LR. Impact of xerostomia on the quality of life of adolescents with type 1 diabetes mellitus. Oral Surg Oral Med Oral Pathol Oral Radiol Endod 2009; 108(3):376-382..

Resources used to help adolescents in the management of diabetes

The most diverse resources have been used with the objective of helping diabetic adolescents to live with the disease. Thus, a study²¹21. Jaser SS, White LE. Coping and resilience in adolescents with type 1 diabetes. Child Care Health Dev 2011; 37(3):335-342. aimed to identify which of the coping strategies used by adolescents have the greatest impact on their competence in dealing with diabetes. This study showed that the resolution of emotional problems was associated with higher QoL scores and better metabolic control, as well as the use of secondary strategies such as disease acceptance and distraction, better social competence, better QoL and better metabolic control. Researchers concluded that using effective coping strategies to help adolescents address DM1 is overly crucial.

In the UK, outpatient courses were offered to 48 adolescents aged 11 to 16 for three days to help them manage diabetes. Evaluations included glycemic control (HbA1c), body mass index (BMI) and hypoglycemia frequency before and after the course (three and six months post-intervention). QoL was assessed before the course and two weeks, three and six months after. The results showed that expectations of the pre-course group were met, and the educational evaluation was consistent. HbA1c and BMI indices did not change and there were no hypoglycemia episodes, but parents and adolescents reported improved QoL after the course¹⁴14. Waller H, Eiser C, Knowles J, Rogers N, Wharmby S, Heller S, Hall C, Greenhalgh S, Tinklin T, Metcalfe C, Millard E, Parkin V, Denial M, Price K. Pilot study of a novel educational programme for 11–16 year olds with type 1 diabetes mellitus: the KICk-OFF course. Arch Dis Child 2008; 93(11):927-931..

Another approach²⁰20. Iafusco D, Galderisi A, Nocerino I, Cocca A, Zuccotti G, Prisco F, Scaramuzza A. Chat line for adolescentes with type 1 diabetes: a useful tool to improve coping with diabetes: a 2-year follow-up study. Diabetes Technol Ther 2011; 13(5):551-555. that also aimed to support diabetic adolescents in the management of the disease evaluated the impact of an online chat for two years regarding the quality of life and metabolic control of 193 adolescents aged 10 to 18 years with type 1 diabetes. In this case, there was a significant improvement (P=0.0001) in those who participated in chat sessions, in addition to a decrease of 0.4% in HbA1c (7.8 ± 1.1% vs. 7.4 ± 0.5%, P<0.0001) compared to 0.1% of controls (7.9 ± 1.9% vs. 7.8 ± 1.8%, P=0.668). Authors concluded that this type of strategy is an inexpensive and effective tool that can be used by the team to assist adolescents in managing diabetes and their daily lives. Continuing education provided by professionals committed to the promotion and maintenance of care and self-care may contribute to healthy living and to improving QoL of diabetics⁴⁰40. Torres HC, Souza ER, Lima MHM, Bodstein RC. Intervenção educativa para o autocuidado de indivíduos com diabetes mellitus. Acta Paul Enferm 2011; 24(4):514-519..

A different approach was used in a study⁴4. Damião EBC, Pinto CMM. “Being transformed by illness”: adolescents’ diabetes experience. Rev latino-am Enfermagem 2007; 15(4):568-574. that aimed to evaluate glycemic control, weight status and quality of life over 12 months of adolescents with type 1 diabetes. Thus, a flexible plan of meals and the relationship between insulin and carbohydrate was used concomitantly. Nine months after using a flexible meal and insulin schedule, researchers noted that there was a decrease in mean BMI (Body Mass Index) of 0.15 ± 0.20; P < 0.001 and an increase in hemoglobin A1c (0.7 ± 0.83%, P = 0.001). Adolescents who participated in the study reported that there was no change in the impact or concern about diabetes. However, the mean life satisfaction scores increased (5.5 ± 9.5; p = 0.008). Authors suggest further investigations with such approaches, since studies with this public are scarce.

A study⁴⁰40. Torres HC, Souza ER, Lima MHM, Bodstein RC. Intervenção educativa para o autocuidado de indivíduos com diabetes mellitus. Acta Paul Enferm 2011; 24(4):514-519. with the same objective, also carried out with patients with type 1 diabetes, reached similar conclusions and mentioned the advantages for the diabetics in face of the flexibility in the choice of meals in this type of regimen, going as far as not being obliged to perform the six recommended meals in traditional schemes, thus translating into more acceptance of the disease and improvement of the quality of life. As in the previous study, it also recognized the need for randomized trials to compare different nutritional regimens and reach a more definitive conclusion.

All the efforts undertaken to help adolescents with DM1 to cope with the disease are valid. Living with this disease is a difficult experience for them and their family, hence the importance of the multidisciplinary team to support them, considering the unique therapeutic project, their culture, their convictions, their habits, their fears, their aspirations, in short, their experience in the family and social environment, as well as their difficulties with the disease.

Conclusion

The HRQoL of diabetic adolescents has been a subject studied and widely disseminated in the international literature, but with little repercussion at the national level. However, this does not diminish its relevance, since measuring the HRQoL of diabetic adolescents is a way of knowing their perceptions, needs, fears, aspirations and difficulties regarding self-care.

Many factors interfere with metabolic control, including anxiety and/or stress, fear of hypoglycemia, shame among peers, and others. However, the support of professionals and parents improves the performance of adolescents in relation to self-care and metabolic control.

In this context, measuring the HRQoL of diabetic adolescents and understanding which factors interfere is a way of helping the multi-professional team to design strategies that motivate them for self-care and minimize complications from the disease.

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