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REVIEW ARTICLE • Physis 35 (03) • 2025 • https://doi.org/10.1590/S0103-73312025350316en linkcopy

Open-access Factors related to quality of life in adolescents with type 1 diabetes mellitus: a systematic review

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Abstract

Introduction:  Type 1 diabetes (DM1) is a disease with no cure that requires intensive and permanent treatment throughout life making quality of life (QoL) an important outcome to be considered. Knowing the factors related to QoL in adolescents with DM1 can provide elements to improve diabetes care during adolescence in terms of promoting QoL in the present and future.

Objectives:  To identify and describe factors related to QoL in adolescents with DM1.

Method:  This is a systematic review (SR) carried out following the PRISMA guidelines.

Results:  Thirty-one studies were reviewed, 12 observational and 19 intervention studies. The observational studies covered 3,978 adolescents with DM1 and 354 controls, and the intervention studies covered 2,612. Observational studies showed an association between QoL and demographic, socioeconomic, psychological, behavioral, clinical and healthcare factors. Interventions in face-to-face and online formats relating to psychological, diabetes education and self-care support approaches showed positive impacts on various domains of QoL.

Conclusions:  This SR identified factors associated with QoL in adolescents with DM1, as well as interventions with a positive impact on QoL, providing elements to improve diabetes care during adolescence. Psychological, diabetes education and self-care support interventions based on soft technology showed benefits on QoL domains and can be easily incorporated by health services.

Keywords:
Quality of Life; Diabetes Mellitus Type 1; Adolescence

Resumo

Introdução:   O diabetes tipo 1 (DM1) é uma doença sem cura e requer tratamento intensivo e permanente ao longo da vida, o que torna a qualidade de vida (QV) um desfecho a ser avaliado nesta condição. Conhecer os fatores relacionados à QV em adolescentes com DM1 traz elementos para auxiliar na gestão do cuidado em diabetes durante a adolescência com vistas à promoção da qualidade de vida presente e futura.

Objetivos:   Identificar e descrever os fatores relacionados à QV em adolescentes com DM1.

Método:  Trata-se de uma revisão sistemática (RS) realizada de acordo com as diretrizes PRISMA.

Resultados:  Foram revisados 31 estudos, sendo 12 observacionais e 19 de intervenção. Os estudos observacionais demostraram associação entre QV e fatores demográficos, socioeconômicos, psicológicos, comportamentais, clínicos e relacionados aos cuidados em saúde. Intervenções em formatos presencial e on-line, relativas a abordagens psicológicas, de educação em diabetes e de apoio ao autocuidado mostraram impactos positivos sobre vários domínios da QV.

Conclusões:  Esta RS identificou fatores associados à QV em adolescentes com DM1 assim como intervenções com impacto positivo sobre a QV, trazendo elementos que auxiliam na gestão do cuidado em diabetes durante a adolescência.

Palavras-chave:
Qualidade de Vida; Diabetes Mellitus Tipo 1; Adolescência

Introduction

Type 1 diabetes mellitus (DM1) is the most common form of diabetes in adolescents and one of the main chronic diseases in this period of life. The International Diabetes Federation estimates that 1.5 million children and adolescents between the ages of 0 and 19 have DM1 worldwide. In Brazil, there are around 112,240 children under the age of 20 diagnosed with DM1, ranking third in the world in absolute numbers (Ogle et al., 2022).

Adolescents with DM1 have complex health needs, which include dietary management with carbohydrate counting, multiple daily insulin applications, intensive blood glucose monitoring, ongoing diabetes education and management of acute and chronic complications (Dimeglio et al., 2018). Thus, managing DM1 represents a challenge for adolescents and their families, as learning various technical skills for managing DM1, the daily use of invasive procedures, periodic consultations and exams require adaptations to the routine of life, effort and constancy (Freitas et al., 2021; Vargas et al., 2020). It is a complex process that involves discipline, resilience, the ability to solve problems and develop self-care, skills not always acquired by adolescents and their families.

Difficulties in managing DM1 can predispose to acute and chronic complications and compromise the full development of adolescents with DM1 and their quality of life (Elsayed et al., 2023). In addition, the treatment of DM1 requires a certain degree of dietary restriction and pain exposure due to dietary management, multiple daily insulin applications and intensive blood glucose monitoring. In this scenario, quality of life (QoL) becomes an important outcome to assess, since DM1 has no cure and requires intensive and permanent treatment throughout life.

Health-related QoL is a multidimensional construct that reflects the physical, psychological and social dimensions of health. The physical dimension refers to mobility, self-care, usual activities and the presence of pain; psychological health addresses elements such as cognitive functioning, emotional distress and anxiety; and social health refers to the quantity and quality of social contacts and interactions (Haraldstad et al., 2019), dimensions that can be affected by the presence of a chronic disease such as DM1.

Knowing the factors related to QoL in adolescents with DM1 provides elements to help manage diabetes care during adolescence with a view to promoting present and future QoL. This article therefore set out to carry out a systematic review of factors related to QoL in adolescents with DM1.

Methodology

A systematic review (SR) was carried out according to the PRISMA system. The research question that guided the study was: "What factors are related to QoL in adolescents with DM1?". The research protocol was submitted to the PROSPERO platform and given the registration number CRD42021243987. The terms used as research descriptors were found in the Medical Subject Headings list and in the list of Health Sciences Descriptors available on the Virtual Health Library portal. The descriptors were therefore defined as Quality of life and Diabetes Mellitus, Type 1; as well as their synonyms, uncontrolled descriptors and spelling variations: "life quality"; "health-related quality of life"; "diabetes mellitus, insulin-dependent, 1"; "Type 1 diabetes"; "type 1 mellitus". The keywords were connected using the Boolean operators "OR" and "AND", generating the search expression:*("life quality" OR "quality of life" OR "health-related quality of life") AND ("diabetes mellitus, type 1" OR "diabetes mellitus, insulin-dependent, 1" OR "type 1 diabetes" OR "type 1 mellitus").

The electronic databases PubMed, Scielo and LILACS were consulted, listing articles published from January 2009 to January 2021. Three groups of researchers (groups A, B and C) searched the databases simultaneously on 19/02/2021 from 14:00 to 16:30. Groups A and B read the titles and abstracts of the articles independently, selecting the articles according to the inclusion criteria. Cross-sectional, case-control, cohort studies and randomized clinical trials carried out on people diagnosed with DM1 that addressed the subject of QoL and used validated instruments to measure it were considered eligible for the study. Exclusion criteria were case report studies, case series reports, opinion articles, editorials, systematic reviews and articles in languages other than English, Portuguese or Spanish.

The selected articles were assessed in full to determine whether they met the research objective. Those that were excluded at this stage had the reason for exclusion recorded (Figure 1). Disagreements between groups A and B were decided by group C. The selected studies were classified and analyzed by life cycle, and this article presents data from the adolescent population. By adolescents, this SR considered the population between the ages of 10 and 19 as defined by the World Health Organization.1

Results

From the search expression, 28,078 articles were located, and after using the filters period, human research and types of studies, a total of 3,494 studies were found. The selection and recording of eligibility decisions was carried out according to the study selection flowchart shown in Figure 1

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Figure 1
Flowchart for selecting articles.

Charts 1 and 2 provide information on the 31 studies carried out on adolescents that were included in this SR, 12 of which were observational studies (10 cross-sectional studies, one case-control study and one retrospective cohort) and 19 intervention studies (one quasi-experimental study and 18 clinical trials). The observational studies covered 3,978 adolescents with DM1 and 354 controls (Chart 1) and the intervention studies covered 2,612, 12 of which were quasi-experimental studies (Chart 2). The QoL assessment instruments used in the studies were PedsQL (Varni; Seid; Kurtin, 2001), PedsQL diabetes module (Varni et al., 2003), DQLOY (Ingersoll; Marrero, 1991), DQLOY short version (Skinner et al., 2006), DQOL (Almeida; Pereira, 2008), FS-36 (Van Der Zee; Sanderman, 1993), KIDSCREEN-27 (Ravens-Sieberer et al, 2007) and KIDSCREEN-10 (Ravens-Sieberer et al, 2010).

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Chart 1
Summary of observational studies
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Chart 2
Summary of intervention studies.

The observational studies identified various factors associated with QoL in adolescents with DM1, including demographic, socioeconomic, psychological, behavioral, clinical and healthcare-related factors; and the intervention studies tested the impact of interventions aimed at physical activity, insulin therapy and various psychological, diabetes education and self-care support approaches (Chart 3).

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Chart 3
Factors associated with QoL and interventions tested in adolescents with DM1

Demographic and socio-economic factors

Gender, age, marital status, place of residence, education level, family income, occurrence of adverse life events and presence of family conflicts were associated with QOL in adolescents with DM1. Female gender was associated with worse quality of life in most studies (Lukács et al., 2016; Al-Akour; Khader; Shatnawi, 2010; Lukács et al., 2018), with one study identifying worse QOL in males (Souza et al., 2019). Higher age (Al-Akour; Khader; Shatnawi, 2010), lower education level, attending public schools (Costa; Vieira, 2015), single marital status (Souza et al., 2019) and family conflicts (Ingerski et al., 2010) were associated with lower QoL, as was the presence of two or more adverse life events (Commissariat et al., 2017). The adverse events described were hospitalization of a family member, poor school grades, serious conflicts between parents, and severe illness or injury affecting a family member. Living in an urban area (Vasconcelos et al., 2020), higher family income (Costa; Vieira, 2015; Souza et al., 2019; Rechenberg al., 2014) and higher education of parents or legal guardians were associated with better QOL scores (Costa; Vieira, 2015).

Factors related to diabetes and associated conditions

Timing of diabetes (Al-Akour; Khader; Shatnawi, 2010; Costa; Vieira, 2015), metabolic control (Vasconcelos et al., 2020; Costa; Vieira, 2015; Lukács et al., 2018; Souza et al., 2019; Ingerski et al., 2010), insulin therapy regimen (Lukács et al., 2016; Costa; Vieira, 2015; Lukács et al., 2018; Souza et al., 2019; Ingerski et al., 2010; Pérez-García; Goñi-Iriarte; García-Mouriz, 2015), level of physical activity (Lukács et al., 2016; Lukács et al., 2018; Åman et al., 2009), frequency of blood glucose monitoring (Ingerski et al., 2010), associated conditions (Costa; Vieira, 2015; Souza et al., 2019; Rechenberg et al., 2014; Ingerski et al., 2010), self-care (Rechenberg et al., 2014), resilience (Lukács et al., 2018) and self-perception of health (Vasconcelos et al., 2020) were associated with QoL.

QoL was positively related to the frequency of blood glucose monitoring and negatively related to HbA1c values and the number of insulin applications per day (four or more) (Souza et al., 2019). The use of fast insulin (Costa; Vieira, 2015) and the use of insulin pumps (Lukács et al., 2016; Lukács et al., 2018; Ingerski al., 2010; Pérez-García; Goñi-Iriarte; García-Mouriz, 2015) were associated with better QoL, with the retrospective cohort study identifying a reduction in QoL in the first few months of pump use with subsequent improvement in QoL and HbA1c (Pérez-García; Goñi-Iriarte; García-Mouriz, 2015). Two studies found a relationship between diabetes duration and QoL with different results. One found a direct correlation between QoL score and duration of diabetes, indicating a worse quality of life in those with a shorter duration of DM1 (Al-Akour; Khader; Shatnawi, 2010), and the other, a worse QoL in those with a duration of diabetes of 3 years or more (Costa; Vieira, 2015). In the first, there was a predominance of adolescents with a duration of less than 3 years (61%), and in the second, a predominance of adolescents with a duration of 3 years or more (60%).

The practice of moderate-intensity physical activity was associated with higher QoL when it occurred three or more days a week, lasting at least 60 minutes (Lukács et al., 2016; Lukács et al., 2018). The number of days per week of moderate-intensity physical activity was positively correlated with QoL scores (Åman et al., 2009). In clinical trials testing physical activity protocols, no changes in QoL scores were observed after an intervention period of 16 (Faulkner; Michaliszyn; Hepworth, 2010) and 22 (D'hooge et al.; 2011) weeks. These studies were carried out with a small number of participants (12 and 16 adolescents).

Adolescents with celiac disease associated with DM1 and poor adherence to the gluten-free diet had lower QoL and worse glycemic control (Pham-Short et al.; 2016) and thinness was associated with lower QoL scores (Costa; Vieira, 2015). The presence of stress due to diabetes (Rechenberg et al., 2014) and a higher score on the depression scale were associated with lower QoL (Ingerski et al., 2010), while higher QoL was associated with greater resilience (Lukács et al., 2018) and greater self-care (Rechenberg et al., 2014).

Factors related to health care

Various psychological, diabetes education and self-care support approaches were tested in the intervention studies, with positive results on QoL in most of them. The psychological approaches tested that had a positive impact on QoL were cognitive-behavioral therapy (Serlachius et al., 2016), adolescent-family peer therapy (Kichler et al., 2013), web-based (Grey et al., 2013) and face-to-face (Holmes et al., 2014) coping skills training, and positive psychological intervention (via message or phone call) (Jaser et al., 2019).

Educational approaches included web-based (Grey et al., 2013) and face-to-face (Holmes et al., 2014) DM1 management-focused education programs and FLEX (Mayer-Davis et al., 2018) and KICk-OFF (Price et al., 2016) programs. The FLEX Program is based on motivational interviewing and problem-solving training and the KICk-OFF Program focuses on carbohydrate counting, daily insulin dose adjustment and complication management.

All the care support strategies tested increased adolescents' QoL. The strategies tested were an interactive virtual environment with support from a multi-professional team (Boogerd et al., 2014), shared consultations with a multi-professional team (Floyd et al., 2017), text messages via cell phone between consultations (Han et al., 2015), online chat with a doctor (Iafusco et al., 2011) and discussion sessions with a doctor about QoL scores by domain (Murillo et al., 2017). These interventions showed adherence between 65 and 100%.

Five intervention studies showed no impact on QoL: behavioral contract with blood glucose telemonitoring (Caroll et al., 2011), Teens.Conect psychoeducational program (via web), which worked on coping skills and management of DM1 (Whittemore et al., 2016), the problem-solving-based Diabetes Teens Talk program (web-based) (Newton et al., 2013), family-centered group education (Murphy et al., 2012) and a smartphone app for carbohydrate counting and insulin bolus calculation (Klee et al., 2018). Two of these studies had adherence <50% (Whittemore et al., 2016; Murphy et al., 2012), two were pilot studies (Caroll et al., 2011; Newton et al., 2013) and one required a minimum interaction frequency but did not analyze the impact on QoL in relation to variations in the frequency of interactions (Klee et al., 2018).

An observational study described an association between the use of the public health system and lower QoL (Costa; Vieira, 2015).

Discussion

This SR identified factors associated with QoL and interventions that improved QoL in adolescents with DM1. Demographic, socioeconomic, clinical, psychological, behavioral and health care factors were associated to QoL; and educational, psychological and healthcare-related factors were linked to QoL, while educational, psychological, and self-care support interventions had a positive impact. Some identified factors are modifiable and can be targeted through public policies and healthcare practices, whereas non-modifiable factors serve as important risk indicators.

The modifiable factors associated with better QoL were the adolescent’s education level, clinical factors, such as the use of an insulin pump, and behavioral factors. These aspects could be addressed with greater emphasis by public policies and health practices. Attending higher education was associated with better QoL. Thus, encouraging adolescents to enter higher education through the life project approach is a strategy to be considered. The life project approach is part of adolescent health care programs. Considering that DM1 can trigger feelings of risk of death, loss of the dreamed future and lack of prospects (Vargas et al., 2020), this practice takes on even greater relevance.

Another strategy to be considered would be the incorporation of insulin pump dispensing into public policies aimed at people with DM1. Insulin pumps have been associated with better quality of life in most studies. The use of insulin pumps significantly reduces the pain associated with treatment and the occurrence of acute complications. However, because it is a high-cost technology, not all adolescents have access to it. Dispensing insulin in a more physiological way, with a consequent reduction in acute complications, and a reduction in invasive procedures for applying insulin and monitoring blood glucose, with a consequent reduction in pain, are advantages of this technology that can benefit the physical dimension of QoL. However, not all adolescents may adapt to this technology. Behavioral factors such as regular physical activity, intensive blood glucose monitoring, self-efficacy and resilience can be encouraged by health teams in care and/or psychoeducational approaches. The expansion of multi-professional teams in primary health care, as well as the provision of continuing training in diabetes care can enhance access and promote quality of life for adolescents with DM1.

Health care technologies refer to everything that is used as an instrument to provide care to people. Care technologies can be classified as soft, soft-hard and hard. Soft technologies are relationship-oriented technologies (bond production, autonomization, reception, and management of work processes) and soft-hard technologies are well-structured knowledge (Merhy; Feuerwerker, 2016). This SR identified that soft and soft-hard technologies in different formats (face-to-face or remote, individual or group) with psychological approaches, diabetes education and support for self-care, and therefore low cost, proved to be effective in improving QoL. These characteristics allow health services to organize themselves to incorporate them into their practice within their organizational and structural possibilities. These approaches have had an impact on different dimensions of QoL, to a greater or lesser degree, resulting in a better overall QoL score. They have improved self-efficacy (Serlachius et al., 2016; Grey et al., 2013; Holmes et al., 2014), social acceptance (Grey et al., 2013), parental involvement in the treatment (PAHO, 2018), emotional support and shared decision-making (Boogerd et al., 2014), stress reduction (Serlachius et al., 2016; Grey et al., 2013; Holmes et al., 2014) and family conflicts (Grey et al., 2013) and glycemic control (Grey et al., 2013; Price et al., 2016; Lafusco et al., 2011; Whittemore et al., 2016; Klee et al., 2018)

However, the effect of some interventions on QoL was not sustained over time after they ended, highlighting the challenge for health services to organize themselves in order to continue offering these practices, as DM1 is a chronic condition with care needs that persist throughout life. It is worth noting that all the self-care support approaches tested had benefits for QoL, signaling the importance of this support. A recent meta-analysis on non-pharmacological interventions in adolescents with DM1 shows that cognitive/psychological interventions, self-care management and diabetes education were effective in improving QoL and glycemic control, and that the effect is greater when these interventions are carried out in combination (Lee et al., 2024).

Costa et al. observed a worse quality of life (QOL) in adolescents with DM1 treated in the public health system in the metropolitan region of Cuiabá, Mato Grosso, Brazil, compared to those treated in the private care system (Da Costa; Vieira et al., 2015). The authors suggest that this difference may be related to factors such as waiting times for medical appointments, the availability of a multi-professional team, including mental health services, and the socio-cultural characteristics of the communities where the adolescents assessed lived. Brazil's public health system guarantees the distribution of the necessary supplies for the treatment of DM1. However, access to secondary care is often limited, restricting access to approaches based on soft and soft-hard technologies aimed at their specific health condition. It should be noted that DM1 is a disease with complex treatment, which requires specialized medical follow-up and multi-professional care, as described in the Clinical Protocol and Therapeutic Guidelines (Brazil, 2019).

It should be noted that adolescence is a life cycle characterized by intense changes in the social, biological, cognitive and emotional spheres, with the progressive acquisition of autonomy in making decisions about oneself, which can lead to health risk or protection behaviors (WHO, 2023; Hargreaves et al., 2022). Habits established during this period influence the current and future health of adolescents, making adolescence a window of opportunity for health interventions (WHO, 2023; Hargreaves et al., 2022). Therefore, investing in adolescent health reduces present and future health expenditure and improves social capital (Pan American Health Organization, 2018). The process of adolescence, combined with a chronic condition like DM1, imposes additional challenges that increase the vulnerability of adolescents. Using health practices that include factors related to QoL could reduce their vulnerability and promote a better current and future QoL. Addressing the typical experiences of adolescence, such as parties, vacations, eating, driving, sex, pregnancy, alcohol, drugs, studies, career planning, life projects and prejudice, combined with an approach related to self-care, can contribute to promoting the QoL of adolescents with DM1, strengthening the psychological and social domains.

It should be noted that of the 31 studies analyzed in this SR, 28 were carried out in Europe, North America and Australia, countries with a high HDI, and reflect the reality of these geographic regions, and it is not possible to say that the results obtained reflect the reality of other regions, especially those with a lower HDI. In addition, the studies did not address the relationship between dietary management and QoL, an important pillar of DM1 treatment, except in adolescents with DM1 and celiac disease with an evaluation centered on the gluten-free diet.

Conclusions

This SR identified factors associated with QoL and interventions that improved to QoL in adolescents with DM1. Demographic, socioeconomic, clinical, psychological, behavioral and health care factors were associated with the physical, psychological and social dimensions of QoL. Psychological, diabetes education and self-care support interventions in a variety of formats based on soft and soft-hard technology showed benefits on various domains of QoL.

This SR highlights elements that could aid in the management of care, the organization of health services, and the promotion of QoL in adolescents with DM1. All self-care support approaches, along with various psychological and diabetes education strategies, were effective in improving QoL, and most of them are based on soft and soft-hard technologies, which facilitate their integration into health services.

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  • 1
    All research data are available in this text.
  • Editor:
    Fernanda Mattioni

Data availability

All research data are available in this text.

Publication Dates

  • Publication in this collection
    15 Sept 2025
  • Date of issue
    2025

History

  • Received
    03 May 2024
  • Reviewed
    15 Nov 2024
  • Accepted
    26 Nov 2024
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