Background
Young adults with type 1 diabetes mellitus (T1DM) not only face developmental milestones, but also are expected to take over full responsibility for managing the disease. A high degree of self-control is needed, with the main goal to maintain optimal glycemic control [
1]. Optimal glycemic control reduces the risk of disease progression and complications [
2,
3]. In an American study on continuous glucose monitoring, only 17% of early young adults (18–25 years) and 30% of late young adults (26–30 years) met recommendations from the American Diabetes Association for glycemic control [
4]. Those not meeting the recommendations are at risk for developing diabetes-related complications, like retinopathy or hypertension [
2,
5,
6]. These findings taken together make clear that young adulthood represents a critical period for people with T1DM.
Moreover, the process of transition from pediatric to adult health services in this period may result in a gap in services that negatively affects the health of young people with a chronic condition [
7]. While multidisciplinary pediatric care for diabetes is often extensive and child-centered, adult care services expect their patients to be more independent and responsible for their own treatment [
8]. A review study concluded that more than 25% of young adults had reported a more than 6 months’ gap in medical care during transition to adult health care services [
9]. Young adults often show poor clinic attendance or may even become lost to follow-up, which features have been associated with serious and costly medical consequences, such as diabetic ketoacidosis [
10]. Therefore, poor transition to adult care may further contribute to adverse health outcomes.
Facing multiple life transitions while coping with a demanding disease can understandably impact one’s health-related quality of life (HRQOL). Previous research has shown that T1DM is associated with impaired HRQOL and loss of utilities [
11,
12]. International diabetes guidelines therefore increasingly recommend the use of HRQOL measurement instruments to guide routine care [
13]. The vast majority of HRQOL studies so far have been performed in children or adolescents with T1DM [
1,
14‐
16], while reports regarding HRQOL in young adults are scarce [
9,
17‐
19]. In a study in a large global cohort of youth with T1DM (8–25 years), the 19–25 age group reported poorer HRQOL than did the younger age groups [
17]. Young adults with T1DM may have age-specific worries that affect their HRQOL, such as concerns about being denied insurance, getting the job they wanted, living independently, future complications and having children [
9,
19]. Research on HRQOL in this vulnerable group of young adults is scarce, however, and comparisons with healthy young adults are currently lacking.
The aim of this study was to assess HRQOL in a national cohort of young adults with T1DM in the Netherlands, and to compare their HRQOL scores with those of Dutch norm groups of healthy young adults (aged 18–25) and young adults with different chronic health conditions. This comparison may provide more insight in the impact of T1DM on young adults’ quality of life.
Results
Three hundred seventy-three eligible patients with T1DM were invited to fill out the online questionnaire, of whom 165 completed the questionnaire (response rate 44.2%). Their mean age was 22.6 years (SD = 1.6, range 19.0–28.0) and 60.0% was female. Most (69.5%) had middle level education and a paid job (78.0%). Half of the whole group was still studying or had an internship, and 61.0% lived with their parents (Table
1). The mean age at transfer was 18.4 years (SD = 1.2); the mean time elapsed between transfer and completing the questionnaire was 4.7 years (SD = 1.1). Non-response data were available only with regard to gender and age for young adults who had made the transfer to adult services in 2012–2014. Data showed that 36.9% of the non-responders was female and had an average age of 23.6 (SD = 1.4). Thus, non-responders were more often male (χ
2 = 21.814,
p < 0.000) and statistically significantly older than the participating young adults (t = 6.337 p < 0.000).
Table 1Characteristics of 165 young adults with T1DM participating in the study
Age, years ± SD | 22.7 ± 1.6 |
Female | 99 (60.0) |
Education |
Low | 12 (7.3) |
Middle | 115 (69.7) |
High | 38 (23.0) |
Studying or internship | 83 (50.3) |
Paid work | 128 (77.6) |
Living with parents | 99 (60.0) |
Dutch PedsQL-YA norm data of 310 healthy young adults and 75 young adults with a chronic disease were used for comparisons. The average age of the healthy group was 22.2 (SD = 2.4); 51.3% was female. In the chronic disease group the average age was 22.0 (SD = 2.4); 62.7% was female. Age (F = 2.740, df = 2,
p = 0.065) and gender (χ
2 = 5.135,
p = 0.077) did not significantly differ from our study group (Table
2).
Table 2PedsQL-YA scores and effect sizes (Cohen’s d) for young adults with T1DM compared to two norm groups (healthy and chronic disease) for age group 18–25
| N = 165 | N = 310 | | N = 75 | |
| M (SD) | M (SD) | d | M (SD) | d |
Total | 79.0 (15.3) | 85.9 (11.2) | 0.6 | 75.2 (15.1) | − 0.2 |
Physical | 84.5 (15.9) | 90.2 (12.5) | 0.5 | 77.8 (20.5) | −0.3 |
Emotional | 70.9 (21.9) | 78.4 (17.7) | 0.4 | 69.7 (18.1) | −0.1 |
Social | 86.2 (15.1) | 88.4 (13.7) | 0.2 | 79.2 (17.4) | −0.4 |
School | 71.0 (19.0) | 84.0 (14.3) | 0.9 | 72.7 (16.9) | 0.1 |
Multivariate regression analyses were used to compare HRQOL-scores between the different groups, controlling for gender and age. The model for the total PedsQL-score was statistically significant, F (4, 545) = 19.237, p < 0.000, and accounted for 12.4% of the variance. The T1DM study group had significantly different HRQOL-scores compared to both norm groups (healthy and chronic disease). HRQOL-scores in the study group were lower than in the healthy norm group (β = 0.228, p = 0.000), and higher than in the chronic disease group (β = − 0.101, p = 0.026). This difference (− 4.015) was too small to be of clinical relevance. Age (β = − 0.085, p = 0.036) and gender (β = − 0.148, p = 0.000) were significantly related to HRQOL. Males and younger participants had better HRQOL-scores.
To further explore the differences on HRQOL scores, MUltivariate regression analyses were used to compare HRQOL-scores between the different groups, controlling for gender and age. Data are presented in Table
3. Compared to their healthy peers, young adults with T1DM scored significantly worse on all domains of HRQOL except social functioning. Particularly, functioning at school or work was worse than that of the healthy norm group. This difference (− 13.0) could be considered clinically significant. The HRQOL-scores of the T1DM study group were comparable to the scores of the chronic disease group on emotional and school/work functioning. Scores on physical and social functioning were significantly better than the norm scores of young adults with a chronic disease. However, these statistically significant differences were of minimal clinical relevance.
Table 3Multivariate regression analysis for groups comparisons (diabetes, healthy and chronic disease group) on the PedsQL-YA scales, corrected for age and gender
| B | SE | β | t | p-value |
Total | Diabetes | reference | | | | |
Healthy | 6.294 | 1.248 | 0.228 | 5.042 | 0.000 |
Chronic disease | −4.015 | 1.801 | −0.101 | −2.229 | 0.026 |
Age | −0.533 | 0.254 | −0.085 | −2.103 | 0.036 |
Gender | −4.069 | 1.116 | −0.148 | −3.645 | 0.000 |
Physical | Diabetes | reference | | | | |
Healthy | 5.007 | 1.411 | 0.161 | 3.549 | 0.000 |
Chronic disease | −6.986 | 2.035 | −0.155 | −3.433 | 0.001 |
Age | −0.682 | 0.287 | −0.097 | −2.379 | 0.018 |
Gender | −4.862 | 1.261 | −0.157 | −3.854 | 0.000 |
Emotional | Diabetes | reference | | | | |
Healthy | 6.399 | 1.794 | 0.163 | 3.568 | 0.000 |
Chronic disease | −1.484 | 2.587 | −0.026 | −0.573 | 0.567 |
Age | −0.875 | 0.364 | −0.098 | −2.402 | 0.017 |
Gender | −8.592 | 1.604 | −0.220 | −5.357 | 0.000 |
Social | Diabetes | reference | | | | |
Healthy | 1.938 | 1.418 | 0.064 | 1.367 | 0.172 |
Chronic disease | −7.140 | 2.045 | −0.164 | −3.491 | 0.001 |
Age | −0.237 | 0.288 | −0.035 | −0.822 | 0.411 |
Gender | −1.797 | 1.268 | −0.060 | −1.417 | 0.157 |
School | Diabetes | reference | | | | |
Healthy | 12.742 | 1.571 | 0.366 | 8.111 | 0.000 |
Chronic disease | 1.459 | 2.266 | 0.029 | 0.644 | 0.520 |
Age | −0.251 | 0.319 | −0.032 | −0.788 | 0.431 |
Gender | −0.606 | 1.405 | −0.017 | −0.432 | 0.666 |
The young adults with diabetes experienced most problems on the following three PedsQL-YA items: ‘I have low energy’, ‘I forget things’ and ‘It is hard to pay attention at work or study’. More than a quarter (26.1%) of the young adults with diabetes was ‘almost always’ or ‘often’ low in energy, 17.0% forgot things and 13.3% had a hard time paying attention. In comparison with the healthy norm group, relatively more young adults with T1DM reported low energy (healthy norm: 4.8%; χ2 = 45.242, p = 0.000), forgot things (healthy norm: 1.6%; χ2 = 39.283, p = 0.000), and had problems paying attention (healthy norm: 4.5%; χ2 = 11.952, p = 0.001). There were no significant differences between the T1DM group and the chronic disease group.
Discussion
This unique nationwide study in the Netherlands shows that the surveyed young adults with T1DM had a good social life, but performed worse on physical, emotional, and school/work functioning than do their healthy counterparts. Particularly functioning at school or work was impaired. HRQOL of young adults with T1DM was comparable to norm scores of young adults with chronic diseases, as the differences were too small to be of clinical relevance. In addition, a quarter of young adults with T1DM reported fatigue.
Earlier studies in young adults with chronic diseases also showed the negative impact of the condition on social participation and work. For example, Sattoe et al. [
27] found four patterns of social participation among young adults with a chronic condition. Those with a social participation pattern similar to that of healthy age-mates reported lower HRQOL. Keeping up with social demands might be challenging for young adults with a chronic condition. A recent review on the impact of growing up with a chronic disease on psychosocial outcomes showed a lower likelihood of having a paid job [
28]. Similarly, a study in adults with T1DM showed higher unemployment and sick leave rates among this group compared to the general population – while they were slightly better educated [
9,
29]. Extra guidance for finding the right balance between social life and work could be beneficial for these young adults.
One quarter of our study population reported fatigue, compared to only 4.8% of the healthy norm group. Fatigue is a prevalent and burdensome complaint of patients with T1DM [
30,
31], and is generally found in childhood chronic disease [
32]. Research shows that these patients’ fatigue is not simply explained by somatic processes such as suboptimal glycemic control, but that cognitions and behaviors also play an important role in the perpetuation of fatigue [
31]. Therefore, young adults with T1DM could probably benefit from cognitive-behavioral therapy (CBT) to manage their fatigue – as shown in a large multicenter, randomized controlled trial [
30].
All in all, growing into adulthood with T1DM may go hand-in-hand with impaired HRQOL and with fatigue. Young adulthood represents a vulnerable period with high health risks, even higher than in childhood or adolescence. This is confirmed by a large global study among youth (8–25 years) with T1DM, in which the young adult age group reported the lowest HRQOL [
17]. Therefore, it is important to monitor their HRQOL from childhood into adulthood. Regular assessments in outpatient clinics provide the opportunity to discuss health-related topics [
33], like functioning at school or work and to detect problems during transition. A smooth transition to adult health care services – preferably with the use of a structured transition program – is critical [
34]. However, the appropriate ingredients and outcomes of such a program have not yet been detailed [
35]. In a study of Fair et al. [
36], achieving optimal quality of life was rated as the most important outcome for successful transition.
The present study has several strengths, including the relatively large sample size, the comparison with Dutch norm scores for the PedsQL-YA controlling for age and gender, a nationwide representation of young adults with T1DM, and the bridging of a significant gap in knowledge on quality of life among young adults with T1DM. Limitations include the suboptimal response rate (44.2%), although this is comparable with that in other post-transition diabetes studies [
37], as well as the significant differences in gender and age between responders and non-responders. Non-responders were more often male and significantly older than respondents. As men tend to report higher HRQOL [
24], this could have led to an overestimation of problems in HRQOL. However, health surveys in adolescents generally show that non-response bias leads to a substantial underestimation of health problems [
38]. Therefore, it is difficult to estimate the size and the direction of non-response bias in our sample. Furthermore, the cross-sectional design precluded us from examining causality. Longitudinal studies are necessary to understand the causal underpinnings of HRQOL. Additionally, we did not study what variables contributed to better or worse HRQOL. Our primary aim was to explore the impact of T1DM on young adults’ quality of life. For future studies, examining predictors for HRQOL would be of interest. Candidate predictors include worries about the future, level of physical activity, and clinical parameters such as HbA1c, BMI, time-in-range, and fear of complications like hypoglycemia [
19]. More research on chronic fatigue in T1DM is also needed, as this is an understudied complaint [
39].
Conclusion
The impact of T1DM on young adults’ quality of life is substantial. These young adults with T1DM may be socially active, but as a downside they may suffer from fatigue and experience problems at work. Finding the right balance between personal and professional life while managing a demanding disease is not easy for these young adults. This underscores the desirability of regular assessing HRQOL, including work- and study-related issues, in clinical practice. Particularly, functioning at school or work was worse than that of the norm group.
Acknowledgments
We wish to thank all participating young people and professionals from the diabetes teams for facilitating the data collection. Furthermore, we thank Maartje van der Slikke, Evelien de Kruif, Houda Alla, Valérie Wester, and Saskia Hartog for their contributions to the data collection.
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