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Research Article

Influencing factors of health-related quality-of-life perceived by both children/adolescents patients with type-1 diabetes mellitus and their parents: A North-African study

[version 1; peer review: 2 approved]
PUBLISHED 30 Apr 2024
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Abstract

Aim

To determine the influencing factors of health-related quality-of-life (HRQoL) perceived by North-African children/adolescents with type-1 diabetes-mellitus (T1DM) and their parents.

Methods

It was a cross sectional study conducted in Tunisia. A total of 116 patients ( ie ; 43 children and 73 adolescents) and their parents were included. The Arabic validated version of the Pediatric Generic Core Quality-of-Life Inventory 4.0-Scale (PedsQL4.0) was used to evaluate the HRQoL of children/adolescents as perceived by patients and parents. The dependent data were the patients’ self-report and the parents’ proxy-report of the PedsQL4.0 total scores, and the independent data were the patients and parents characteristics.

Results

Patients’ PedsQL4.0 total score was influenced significantly by siblings in the family > 2; lipodystrophy, and glycosylated hemoglobin (HbA1C). The combination of these factors explained 34.84% of the PedsQL4.0 total score variability. Parents’ PedsQL4.0 total score was influenced significantly by lipodystrophy, siblings; body mass index (BMI), hypoglycemia episodes, and HbA1C. The combination of these factors explained 56.92% of the PedsQL4.0 total score variability.

Conclusion

T1DM patients self-reported HRQoL was influenced by siblings in the family > 2; lipodystrophy, and HbA1C. The parents’ proxy-report HRQoL was influenced by lipodystrophy, siblings, BMI, hypoglycemia episodes, and HbA1C.

Keywords

Adolescent, Child, Diabetes mellitus type 1, Parents, HRQoL, North Africa

Introduction

Type 1 diabetes mellitus (T1DM) is a major public health problem.1 It is one of the most common chronic childhood diseases, with approximately 208000 children/adolescents worldwide affected in 2017.2 The 2010-2020 decades have seen a significant increase in the incidence of T1DM worldwide.3 This corresponds to an increase of more than 120000 new cases of T1DM per year in children/adolescents.2 Between 2011 and 2021, and according to the 2022-report of the world health organization, the number of cases of T1DM in African children/adolescents increased fivefold (ie; from 4 to 20 cases per 1000 children/adolescents).4 In low and middle- incomes countries, an increase of the incidence of T1DM was also observed.57 T1DM influences negatively the physical and mental health, emotional development and vital prognosis of children/adolescents.2,5,8 Traditionally, the management of T1DM has focused on achieving an optimal glycemic control in order to prevent long-term complications.6 In addition to technological advances in the treatment of T1DM, more and more attention is being paid to the psychosocial component, and the family dynamics of the diabetic patient.9 In fact, the complexity of the daily care plan, which continues throughout life, can affect negatively health-related quality of life (HRQoL) in children/adolescents with T1DM.2,616 According to the Erikson's developmental theory, the disease brings significant changes to the development of the children/adolescents, and when the latter experience long-term treatment with painful injections, their normal mental development process is interrupted, and their self-esteem can be affected.17 Every day, these children/adolescents live with the burden of this disease.17 HRQoL, which is a concept, formed from the physical environment and a combination of social, emotional and school functions,11,16,18,19 has become an important issue in the health field.

Generic and diabetes-specific HRQoL assessments are often advocated and have been shown to be useful in research.12 For this reason, and in order to take decisions about the management of T1DM, approaches that focus on the triad ‘child-family-disease’ are needed.20 Improving the HRQoL and the well-being of children/adolescents with T1DM is as important as metabolic control to prevent secondary morbidity.2022 Consequently, ‘modern’ diabetes care for children/adolescents has shifted from a purely medical approach to one that aims at optimal glycemic control and maximum HRQoL.21 Despite the large number of international scientific studies examining HRQoL of diabetic children/adolescents,2,524 only one Egyptian study were performed in North-Africa.5 The Egyptian authors evaluated the HRQoL of 72 children with T1DM, tested how much it could be affected by their mood and family attitudes, and studied the relationship between these variables and the metabolic control of the patients.5 They have included a control group of 72 children apparently healthy, non-diabetic, age and sex matched and siblings of the diabetic patients were included as a control group.5 The authors have applied the Pediatric Generic core Quality of life Inventory 3.0 Scale (PedsQL3.0), parent stress index (PSI) questionnaire and glycosylated hemoglobin (HbA1C, %).5 The authors reported i) significant positive fair correlations between the age, weight and body mass index (BMI) of diabetic children with the children and parent’ PedsQL; and ii) significant negative weak correlations between PSI score and children and parent’ PedsQL (ie; the higher parental stress, the lower HRQoL of the diabetic child (reported by both child and parent).5

The results of the studies to examine the HRQoL of diabetic children/adolescents2,5,6,8,9,12,20,23,24 can contribute to the evolution of professional practices and lead to the improvement of the delivery of health services to children/adolescents with T1DM in low- or middle- income countries, such as Tunisia. Therefore, the objectives of this study were to i) assess the HRQoL of Tunisian children/adolescents with T1DM as perceived by both patients (self-reported) and parents (proxy-reported); and ii) determine the influencing factors of the self-reported and proxy-reported HRQoL perceived by patients and their parents, respectively.

Methods

Study design

It was a cross-sectional study performed between January 2019 and February 2022 in the pediatric department of the Farhat HACHED Sousse university hospital, Tunisia. The study’s ethical approval was obtained from the ethics committee of the faculty of medicine of Sousse (Reference: CEFMS 61/2021). After obtaining their agreement, the parents of the children/adolescents signed a consent form. In addition, adolescents over 13 years old signed the consent form. The children/adolescents and their parents were informed about the i) study protocol and its aims, and ii) possibility of withdrawal from the research project at any time. During the period between June 2020 and February 2022, all recommended preventive measures to fight against the transmission of the severe acute respiratory syndrome coronavirus 2 were applied (eg; physical distancing of at least one meter, wearing a fitted facemask properly and cleaning hands frequently with alcohol-based hand rub or soap and water), During each study step, all recommended preventive measures to fight against COVID-19 transmission were applied. The study was conducted following the guidelines established by the STROBE statement.25 In order to respect the anonymity and confidentiality of the data, a code was assigned to each patient.

Population

The source population was the children/adolescents (and their parents) attending pediatric outpatient consultations at the above cited hospital. The target population was the children/adolescents with T1DM who were consulted during the study period. Only children/adolescents aged 8 to 18 years, who were accompanied by their parents, who had a medical diagnosis of T1DM at least one year before the inclusion in the study, and who received only insulin analogues for at least three months were included in the study. Children/adolescents who had a mental retardation, a sensor neural disorder that interferes with normal communication; or another chronic disease, such as celiac disease, were not included in this study. Children/adolescents who participated in another experimental survey during the study period were excluded from the statistical analysis. Figure 1 exposes the study flow chart.

99745cb2-fc4e-4d1e-bffc-98961ad48909_figure1.gif

Figure 1. Study flow chart.

Sample size

The sample size was appraised according to the following formula26: N = (Zα)2 s2/d2, where “s” is the standard deviation (SD= 9.79) and “d” is the accuracy of estimate or how close it is to the true mean (= 76.51). Given the pioneering nature of this study, the above “s” and “d” data were collected from a previous work including 503 adolescents with T1DM,27 aiming to evaluate the HRQoL via the diabetes quality of life instrument for youth.28 In the aforementioned study, the percentage mean score of the total HRQoL for all adolescents was 76.51±9.79. “Zα” is the normal deviate for a one-tailed alternative hypothesis at a level of significance (Zα equal to 1.28 at an error rate of 0.10%). The appraised sample size gives a sample of 116 patients. The assumption of 25% for the non-inclusion and exclusion criteria gives a revised sample of 154 patients (154 =116/ (1.0-0.25)).

Data collection and procedure

One investigator (IBA in the authors’ list) was in charge of administering and explaining the different components of the questionnaire to children/adolescents and their parents. On the beginning of the consultation day, the questionnaire was given to patients and parents independently in order to improve the response rate. The questionnaire was then collected at the end of the morning of the same day. The questionnaire included two parts and the time taken to complete it was 15 minutes.

The first part of the questionnaire, which was written in Arabic, was pretested, structured, and self-administered by the researcher (IBA in the authors’ list). It was related to personal data of both diabetic patients and their parents. For parents, the following data were collected: accompanying tutor (ie; mother; father), marital status (ie; married; divorced), schooling-level (ie; illiterate or primary or secondary school; university), and socio-economic level [ie; low (eg; unskilled worker, jobless); high (eg; skilled worker, farmer, manager)]. For patients, the following data were collected: sex (ie; male; female), age (ie; years, children (8 to 12 years), adolescents (13 to 18 years)); BMI (kg/m2), corpulence status (ie; normal weight; overweight or obese),29 siblings in the family (ie; number sibling > 2), schooling-level [ie; low (primary or preparatory school) and high (secondary school)], schooling-performance (ie; normal; repeating or stop); family history of diabetes mellitus (ie; yes, no), onset age and seniority of T1DM (ie; year), person in charge of insulin injection (ie; patient, parents), dietetic education (ie; yes, no), diet (ie; yes, no), hypoglycemia episodes during the last three months before the inclusion in the study (ie; number, yes, no), average glycaemia during the hypoglycemia episodes (ie; g/l), home self-monitoring (ie; yes, no), home self-monitoring frequency (ie; never, > 1), most recent HbA1C level (ie; %), duration of HbA1C control (ie; control < 3 months, control > 6 months), lipodystrophy (ie; yes, no), previous hospitalization (ie; yes, no), and etiologies of hypoglycemia (ie; lipodystrophy, diet, stop insulin). Two subgroups of patients (ie; non-active; active) were formed according to regular sports activity based on the response to the following question30: do you practice any sports activities outside of school? Some data (eg; family history of T1DM, HbA1C levels and potential previous hospitalizations) were extracted from the patients’ medical records.

The second part of the questionnaire was reserved to the PedsQL4.0.10,31 The latter was developed to assess the HRQoL of children/adolescents (self-reported) as well as their parents’ (proxy-report).10,31 HRQoL is assessed in four domains: physical function (8 items), emotional function (5 items), social function (5 items), and school function (5 items).10,31 The following three scores are determined: total score, physical health score, and psychosocial health score (covering emotional, social and academic function).10,31 Total scores are obtained by adding the scores and dividing them by the total number of items completed. Patients and parents were asked to rate the ‘problem in the past three months’ on 5 Likert scales from 0 to 4 (0 = never a problem; 1 = almost never a problem; 2 = sometimes a problem; 3 = often a problem, 4 = almost always a problem). Then each item was scored backwards and linearly transformed on a scale of 0 to 100 (0 = 100, 1 = 75, 2 =50, 3 = 25, 4 = 0), so that the highest score indicates better HRQoL.10,31 The PedsQL4.0 has appropriate forms for child self-assessments and parent proxy reports,31 and has shown good internal consistency, reliability and validity.10 The validated Arabic version of the PedsQL4.0 was applied.15 Permission to use the PedsQL 4.0 was obtained from the authors.

Statistical analysis

Data expression. The Kolmogorov Smirnov test was used to analyze quantitative data’s distribution. All quantitative data have a normal distribution, and therefore were expressed as means ± standard deviation. Categorical data were expressed as number (frequency).

Comparisons parents vs. patients. Comparisons of the PedsQL4.0 scores between parents and patients were performed by the Student-T test.

Univariate and multiple regression analysis (influencing factors). The dependent variable (ie; PedsQL4.0 total scores of patients and parents) was normally distributed. Student-T test were used to evaluate the associations between the PedsQL4.0 total score and categorical data [ie, parents’ data (accompanying tutor, marital status, schooling-level, and socio-economic-level); patients’ data (sex, age range, siblings in the family, schooling-level, schooling-performance, corpulence status, charge of injections, dietetic education, diet, regular physical activity, hypoglycemia, home self-monitoring, frequency of home self-monitoring, duration of the control of HbA1C, lipodystrophy, previous hospitalizations, and family history of diabetes mellitus)]. The Pearson product-moment correlation coefficients (r) evaluated the associations between the PedsQL4.0 total score and continuous data [ie; age, siblings, BMI, hypoglycemia episodes, average glycaemia during hypoglycemia episodes, HbA1C, onset age of T1DM, and seniority of T1DM]. The linearity of the association between the PedsQL4.0 total scores and the continuous data was checked graphically by plotting each regressor against the PedsQL4.0 total scores. Only significantly and linearly associated data were entered into the model.

Linear regression models were used to evaluate the independent data explaining the variance in PedsQL4.0 total scores. Candidate data were put into the model with a stepwise selection method. To determine entry and removal from the model, significant levels of 0.15 and 0.05 were used, respectively. No colinearity between predictors was detected with variance inflation factors. The linear regression models were evaluated by the (r) and the standard error. All statistical procedures were performed using a statistical software (StatSoft, Inc. (2014). STATISTICA (data analysis software system), version 12. www.statsoft.com, RRID: SCR_014213). The significance level was set at p<0.05.

Results

Among the 154 patients assessed for eligibility, and after applying the inclusion, non-inclusion, and exclusion criteria, 116 diabetic patients aged 8 to 18 years and 116 parents were included in the study (Figure 1).

Parents and patients characteristics

Table 1 illustrates the parents’ and patients characteristics, respectively. Its main conclusions were: i) almost 92% of parents have a low socio-economic-level; ii) there was a predominance of adolescents and females (63% and 64%, respectively), iii) 56% of patients have normal weight, iv) the mean of siblings was 3±1, and 71% of patients had more than 2 siblings in the family, v) the means of hypoglycemia episodes and HbA1C were 4.3±1.5, and 10±1, respectively, and vi) 69% of patients have lipodystrophy.

Table 1. Characteristics of parents and patients with type-1 diabetes mellitus (T1DM) (n=116).

PARENTS
Category
Accompanying tutorbMother87 (75)
Marital statusbMarried114 (98)
Schooling-levelbIlliterate or primary or secondary school91 (78)
University25 (22)
Socio-economic-levelbLow92 (79)
PATIENTS
Anthropometric and socio-demographic data
AgeaYrs14±4
Age rangebAdolescents (13-18 yrs)73 (63)
SexbFemale74 (64)
Body mass indexakg/m222.3±3.5
Corpulence statusbNormal weight65 (56)
Overweight or obese51 (44)
SiblingsaNumber3±1
Siblings in the familyb> 282 (71)
Schooling-levelbLow81 (69)
High35 (30)
Schooling-performancebNormal68 (59)
Repeating or stop48 (41)
Clinical and biological data (last 3 months)
Charge of injectionsbYes65 (56)
Dietetic educationbNo79 (68)
DietbNo107 (93)
Regular physical activitybActive88 (76)
Home self-monitoringbYes61 (53)
Frequency of home self-monitoringbNever51 (44)
HypoglycemiabYes114 (98)
Hypoglycemia episodesaNumber4.3±1.5
Average glycaemia during hypoglycemia episodesag/l0.53±0.12
LipodystrophybYes80 (69)
Glycosylated hemoglobin (HbA1c)a(%)10±1
Duration of the control of HbA1cb<3 months110 (95)
Previous hospitalizationbYes47 (41)
Onset age of T1DMaYrs7±3
Seniority of T1DMaYrs7±4
Family history of diabetes mellitusbYes32 (28)
Etiologies of hypoglycemiabLipodystrophy71 (61)
Diet113 (97)
Stop insulin3 (3)

a Mean±standard deviation.

b Number (%).

Comparison of patients’ self-report and parents’ proxy-report of PedsQL4.0 scores

Patients and parents had comparable scores of physical health (67±20 vs. 70±21, p=0.271, respectively), emotional function (53±20 vs. 57±21, p=0.074, respectively), social function (81±18 vs. 83±18, p=0.502, respectively), academic function (70±21 vs. 70±21, p=0.886, respectively), and total score (68±13 vs. 70±14, p=0.180, respectively).

Univariate analysis between PedsQL4.0 total scores of patients and parents, and categorical and quantitative data

Tables 2 and 3 expose the univariate analysis between PedsQL4.0 total scores of patients and parents and categorical and quantitative data, respectively. Among patients, the following four data influence the PedsQL4.0 total score: siblings in the family, dietetic education, lipodystrophy, and HbA1C. In parents, the following eight data influence the PedsQL4.0 total score: siblings in the family, corpulence status, dietetic education, lipodystrophy, siblings, BMI, hypoglycemia episodes, and HbA1C.

Table 2. Univariate analysis between the pediatric generic core quality of life inventory 4.0 total score (patients’ self-report and parents’ proxy report) and demographic and clinical characteristics.

DataCategoryPatients’ self-reportP-valueParents’ proxy-reportP-value
Patients (n=116)
SexMale (n=42)70±100.10973±90.061
Female (n=74)66±1468±16
Age rangeChildren (n=43)68±110.82470±160.887
Adolescents (n=73)68±1470±12
Siblings in the family≤ 2 (n=82)66±130.005*68±150.005*
> 2 (n=34)73±1176±9
Schooling-levelHigh (n=67)68±120.68971±140.309
Low (n=49)67±1569±14
Schooling-performanceNormal (n=68)
Repeating or stop (n=48)
Corpulence statusNormal (n=65)67±130.66968±150.046*
Overweight or obese (n=51)68±373±12
Charge of injectionsPatient (n=65)70±120.11072±140.117
Parents (n=51)66±1368±14
Dietetic educationYes (n=37)72±120.025*75±110.016*
No (n=79)66±1368±15
DietYes (n=9)74±130.13178±80.087
No (n=107)67±1369±14
Regular physical activityActive (n=88)67±130.44069±140.233
Inactive (n=28)69±1373±15
HypoglycemiaYes (n=114)67±130.15070±140.095
No (n=2)89±286±5
Home self-monitoringYes (n=61)67±110.78969±40.429
No (n=55)68±1571±13
Frequency of home self-monitoringNever (n=51)69±150.51472±120.169
≥ 1 (n=65)67±1169±15
Duration of the control of glycosylated hemoglobin<3 months (n=110)68±130.78770±140.366
3-6 months (n=6)69±1575±7
LipodystrophyYes (n=80)66±130.024*77±110.001*
No (n=36)72±1267±14
Previous hospitalizationsYes (n=47)66±130.90371±130.332
No (n=69)68±1369±15
Family history of diabetes mellitusYes (n=32)67±160.61768±150.253
No (n=84)68±1271±13
Parents (n=116)
Accompanying tutorMother (n=87)67±140.72169±140.165
Father (n=29)68±1173±14
Marital statusDivorced (n=2)77±100.29779±30.367
Married (n=114)68±1370±14
Schooling-levelPreparatory school (n=91)67±130.573170±140.391
University (n=25)69±1172±3
Socio-economic-levelLow (n=92)67±140.24369±140.252
High (n=24)69±1073±13

* P-value (Student T test) < 0.05: comparison between 2 categories for the same group (patients or parents).

Table 3. Univariate analysis between the pediatric generic core quality of life inventory 4.0 total score (patients’ self-report; parents’ proxy report) and quantitative data.

Patients dataUnitPatients’ self-report (n=116)Parents’ proxy report (n=116)
rp-valuerp-value
AgeYrs0.03310.7240.05300.571
SiblingsNumber-0.17740.0567-0.34150.001*
Body mass indexkg/m20.18150.0510.31630.001*
Hypoglycemia episodesNumber-0.06100.515-0.23570.011*
Average glycaemia during hypoglycemia episodesg/l0.02210.814-0.10710.252
Glycosylated haemoglobin%-0.19460.036*-0.26470.004*
Onset age of diabetes mellitusYrs-0.04970.596-0.11800.207
Seniority of diabetes mellitusYrs0.09660.3020.13460.149

* p-value < 0.05.

Multivariate linear regression analysis: predictors of the PedsQL4.0 total scores of patients and parents

Table 4 exposes the multivariate linear regression analysis. Among patients, only three data influence the PedsQL4.0 total score: siblings in the family, lipodystrophy and HbA1C. Altogether, they explain 34.84% of the PedsQL4.0 total score variance. In parents, only five data influence the PedsQL4.0 total score: lipodystrophy, siblings, BMI, hypoglycemia episodes, and HbA1C. Altogether, they explain 56.92% of the PedsQL4.0 total score variance.

Table 4. Multivariate linear regression analysis: predictors of the pediatric generic core quality of life inventory 4.0 total score (PedsQL4.0) of patients and parents.

Independent variablesCategory/unitBStandard error of BCumulative correlation coefficient
Patient self-report (n=116)
Constant-88.10--
Siblings in the family >2Yes=1, No=0- 6.842.15210.2575
LipodystrophyYes=1, No=0- 4.292.65770.3225
Glycosylated hemoglobin (HbA1c)%- 1.208.32760.3484
Parents proxy-report (n=116)
Constant-80.77--
LipodystrophyYes=1, No=0- 6.972.18650.3419
SiblingsNumber- 3.734.01990.4641
Body mass index (BMI)kg/m21.038.56600.5265
Hypoglycemia episodesNumber- 1.698.62650.5610
HbA1c%- 0.9611.43780.5692

Discussion

The main results of the present study including 116 diabetic children with T1DM (and their parents) were that the diabetic patients self-reported HRQoL was influenced by siblings in the family >2; lipodystrophy, and HbA1C, and that the parents’ proxy-report HRQoL was influenced by lipodystrophy, siblings; BMI, hypoglycemia episodes, and HbA1C.

Patients living with T1DM experience various challenges, related mainly to a restrictive lifestyle, multiple daily insulin injections, and monitoring of blood glucose levels.6 The process to manage this chronic disease impacts the HRQoL of the children/adolescents, and interferes also with the familial dynamics and the parents’ HRQoL.32 This study provides results useful for assessing HRQoL in patients with chronic diseases living in Tunisia, and North Africa. To the best of the authors’ knowledge, this is the first North-African study that evaluates the influencing factors of the HRQoL of children/adolescents with T1DM as perceived by patients and parents.

Tunisian diabetic HRQoL scores

The Arabic version of PedsQL4.0 is understandable and usable in Tunisia.15 It has a high validity and reliability.15 Table 5 exposes the PedsQL4.0 scores among different populations of diabetic children/adolescents with TIDM.2,6,8,1016

Table 5. Pediatric generic core quality of life inventory 4.0 data (scores and influencing factors) among different populations of diabetic children/adolescents with type 1 diabetes mellitus.

This studyUSAGreeceUSAIranGreeceKuwaitKuwaitTurkeyEthiopiaEthiopia
Reference10111213141516268
Number116 pat
A par of each child
300 pat
308 par
89 pat
89 par
122 pat
A par of each child
390 CG
94 pat
A par of each child
117 pat
128 control group
Par in 2 groups
112 pat.131 par
104 CG
436 pat
389 CG
Par in 2 groups
149 pat
A par of each child
470 pat
A par of each child
379 pat
Age (yrs)8-18a5-18a2-18a11.5b8-18a5-18a2-18a2-18a8-18a8-18a11.65b
Physical health67±20c86±13c87±12c85±13c69±17c80±1480±11c75±12c82±15c82±20c89±14c
Emotional function53±20c72±20c76±16c74±18c60±20c71±1771±13c73±10c74±21c76±20c86±17c
Social function81±18c86±16c86±14c85±16c77±18c82±1590±11c82±9c91±13c86±19c95±10c
Academic function70±21c74±18c78±15c71±16c67±18c73±1285±15c73±11c75±20c72±16c83±17c
Total score68±13c80±13c82±11c80±12c68±14c77±1182±12c76±11c80±4c79±16c88±11c
Influencing factor of the paients total scoreSiblings in the family >2
Lipodystrophy
HbA1c
NRNRDepression
Adherence.HbA1c
NRAge
Sex
HbA1c
Hypoglycemia
Hyperglycemia
Onset of diabetes
NRDuration of diabetes
HbA1c
Sex
Age
HbA1c
Age
Sibling
Sex
Sibling
HbA1c
Socioeconomic level
Therapeutic education
Hospitalization
Mothers’ and fathers’ educational status
Fars’ occupation, Monitoring blood glucose

a Minimum-maximum.

b Mean.

c Mean±standard deviation.

In this study, the patients’ total score was 68±13 (Table 5). In the one hand, it was comparable to the one of the Iranian population of patients aged 8 to 18 years13 who has a score of 68±14 (Table 5). In the other hand, our score was lower than the ones reported in similar studies [ie, score ranging from 76±1116 to 88±118]. In this study, while the patients’ social function score was high at 81±18, this of the emotional function was low at 53±20. Our results are intermediate with those reported in literature (Table 5). First, almost all previous studies2,6,8,1016 reported that the social function score was the highest [ie; ranging from 77±1813 to 95±108 (Table 5)]. Second, while some previous studies,2,10,11,1316 reported that the emotional function score was the lowest [ie; ranging from 60±2013 to 76±1611 (Table 5)], three studies6,12,13 identified that the academic function score was the lowest [ie; ranging from 67±1813 to 72±166 (Table 5)].

The discrepancy between results could be explained partly by the age of included patients ranging from 2-18 years11,15,16 to 8-18 years.2,6,13 In addition, according to Abderrassoul et al.,16 impaired emotional function may be explained by the lack of autonomy and preoccupation with chronic complications. In order to increase the emotional function score, and to early detect and solve problems that children/adolescents may encounter, we recommend that HRQoL assessment after T1DM diagnosis should be a routine practice.

Patients’ self-report vs. parents’ proxy-report of PedsQL4.0

The PedsQL4.0 scores of diabetic patients were comparable with those of their parents. This result is inconsistent with previous studies, which reported a significant difference between patients and their parents’ subjective perception of T1DM and the impact of the disease on their daily life.2,6,16,27 The concordance between patient and parents results observed in this study can be explained by different factors, such as the presence of communication between parents and their children/adolescents, especially among children, who do not present generally a withdrawal and oppositional behavior before the pubertal period.2,14 Moreover, parents seem to have more concern about their children/adolescents health when they reach school age, given the fact that kids haven’t yet developed an independent personality and weren’t became self-sufficient around this range of age.

Influencing factors of the patients’ and parents’ PedsQL4.0 total scores

Table 5 exposes the influencing factor of the patients’ PedsQL4.0 scores among different populations of diabetic children/adolescents with TIDM. It appears that the following factors are independent predictors of HRQoL as perceived by diabetic patients: HbA1C,2,6,12,14,16 age,2,14,16 sex,6,14,16 siblings,2,6 depression,12 adherence to treatment,12 hypoglycemia,14 hyperglycemia,14 onset of T1DM,14 duration of T1DM,16 socioeconomic level,6 therapeutic education,6 hospitalization,6 mothers’ and fathers’ educational status,8 fathers’ occupation,8 monitoring blood glucose.8 In the present study, among all studies data, siblings in the family, lipodystrophy and HbA1C were independent predictors of HRQoL as perceived by diabetic patients, and lipodystrophy, siblings, BMI, hypoglycemia episodes, and HbA1C were independent predictors of HRQoL as perceived by parents (Table 4). The following sentences will discuss the aforementioned factors.

An increase in the number of children in the family had a statistically significant effect on the HRQoL of children/adolescents as well as their parents (Table 4). A number of “siblings higher than 2” reduces the patients’ HRQol total score by 6.84, and one unit of sibling reduced the parents’ HRQoL total score by 3.73 (Table 4). Our results, which are in line with the findings of some studies from Turkey2 and Ethiopia,6 could be explained by the fact that increasing number of children in family may reduce parental support. Thus, siblings should be included in diabetes health education and diabetic children/adolescents should be supported by all family members.6

Lipodystrophy was an independent predictor of HRQoL as perceived by both patients and parents (Table 4). It appears that the presence of lipodystrophy reduces the patients and parents’ HRQoL total scores by 4.29 and 6.97, respectively. Besides, the changes of the skin and the unsightly aspect of lipodystrophy can also perturb the body image, especially among adolescents, and thus decreases the emotional function in HRQoL. To the best of the authors’ knowledge, no previous study has found an association between lipodystrophy and HRQoL (Table 5).

HbA1C level (%) was an independent predictor of HRQoL as perceived by both patients and parents (Table 4). One unit of HbA1C reduces the patients and parents’ HRQoL total scores by 1.20 and 0.96, respectively (Table 4). Our result is in line with the findings of some previous studies reporting an association between lower HRQoL of patients and higher HbA1C levels.2,6,9,12,14,16

BMI (kg/m2) was an independent predictor of HRQoL as perceived by parents (Table 4). In our study, we observed a noteworthy and positive correlation (r = 0.526), one unit of BMI increases the parents’ HRQoL total score by 1.03 (Table 4). This finding aligns with two previous studies conducted in Saudi Arabia33 and in Egypt.5

Hypoglycemic episodes was an independent predictor of HRQoL as perceived by parents (Table 4). Each hypoglycemic episode decreases the parents’ HRQoL total score by 1.69 (Table 4). Our finding was consistent with other studies that indicated that treatment ongoing risk of hypoglycemia (especially nocturnal hypoglycemia) negatively affect the HRQOL of patients and their families.20 In fact, hypoglycemia episodes are uncomfortable experiences and could cause an important psychological impact on the children/adolescents. Therefore, assessment of psychosocial burden, including fear of hypoglycemia, should be part of the management of T1DM.20 Our findings suggest that motivating a child/adolescent to achieve optimal glycaemia levels and incorporating routine clinical assessment of HRQoL as an important component of diabetes management are necessary to determine the appropriate intervention to improve HRQoL.20 Contrary to the present study, one Greece study14 identified hypoglycemia as an independent predictor of HRQoL as perceived by diabetic patients (Table 5).

Additional factors, such as age,2,14,16 sex,6,14,16 and socioeconomic data,6,8 need to be discussed. First, in the present study, and similar to other studies,3,9,3436 there were no effects of age or sex on HRQoL. However, some previous studies reported that girls have lower total HRQoL scores than boys.6,9,15,16,18,37 In general population, during adolescence, girls tend to have less self-esteem than boys,38 and present more signs of depression,23 which may constitute factors of a lower HRQoL. Moreover, adolescent girls with T1D are reported to be more anxious and less satisfied than boys,16 and experience hormonal changes with an increase of insulin require. In our study, there was no significant association between socioeconomic status and patients’ HRQoL. This is consistent with the finding of a Norwegian study.36 However, some other studies reported that a low socioeconomic level was significantly associated with sub-optimal management of T1DM, and this may negatively affect quality of life.6,8,9,39

Strengths and limitations of this study

The main two strengths of our study were the high enrolment rate (76%) and its pioneer character. Since it is the first study from the Great Maghreb, which assessed HRQoL and associated factors in a pediatric diabetic population.

Our study has three main limitations. The first limitation is related to the lack of a control group. The second limitation concerns the non-evaluation of some other potential determinant of HRQoL such as family and psychological relationships. The third limitation is related to the recruitment method from one center. Since all our patients were recruited from a single pediatric hospital, our results may not be easily generalized to children/adolescents with T1DM living in other locations in Tunisia or North Africa.

Clinical implications

In clinical practice, providing support to patients with T1DM to guide them in reducing the risk of acute and chronic complications. Involving parents in the management of their children/adolescents’ disease and more particularly encouraging a constant commitment for the potential disease progression would eventually improve the HRQoL of children/adolescents as well as their parents. Therefore, our research emphasizes the significance of adequate management of diabetes for improved HRQoL, and conversely, the importance of good HRQoL for maintaining good diabetic control. To improve the low emotional and school function scores identified in the study, it is advisable to regularly evaluate the HRQoL of these children to detect any significant deterioration early on. This will facilitate the implementation of appropriate interventions that can enhance the overall management of the disease. Additionally, in families with multiple children/adolescents, it is essential to involve the siblings in diabetes education and empower them to take responsibility. Providing families with information on available social support resources can also be helpful.

Conclusion

The study indicated that the PedsQL4.0 scores were satisfactory overall, with higher scores on the social function subscale, and lower scores in emotional and school functions. Furthermore, PedsQL4.0 scores for children/adolescents patients, and their parents were comparable. HRQoL of children/adolescents was influence significantly by sibling relationships, lipodystrophy, and HbA1C levels. Therefore, assessing the HRQoL after a diabetes diagnosis can aid in identifying and addressing potential challenges early on for children/adolescents.

Ethical approval

The study’s ethical approval was obtained from the ethics committee of the faculty of medicine of Sousse, Tunisia (Reference: CEFMS 61/2021, date: September 7, 2021).

Informed consent

Written informed consent was obtained from all parents of the children/adolescents after receiving an explanation of the study. In addition, adolescents over 13 years old signed the consent form

Declaration

We have looked for assistance from artificial intelligence (ie; language model, ChatGPT 3.5) in the language editing our scientific paper.40

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Ben Abdesselem I, Kebeili R, Derbel K et al. Influencing factors of health-related quality-of-life perceived by both children/adolescents patients with type-1 diabetes mellitus and their parents: A North-African study [version 1; peer review: 2 approved]. F1000Research 2024, 13:429 (https://doi.org/10.12688/f1000research.148074.1)
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Reviewer Report 19 Dec 2024
Ihsen Zairi, Faculté de Médecine de Tunis, Université de Tunis El Manar, Tunis, Tunisia 
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It’s an interesting article, the author  determine the influencing factors of health-related quality-of-life (HRQoL) perceived by North-African children/adolescents with type-1 diabetes-mellitus (T1DM) and their parents.
 «  The aim of this study was To determine the influencing factors of health-related ... Continue reading
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Zairi I. Reviewer Report For: Influencing factors of health-related quality-of-life perceived by both children/adolescents patients with type-1 diabetes mellitus and their parents: A North-African study [version 1; peer review: 2 approved]. F1000Research 2024, 13:429 (https://doi.org/10.5256/f1000research.162341.r277118)
NOTE: it is important to ensure the information in square brackets after the title is included in all citations of this article.
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Reviewer Report 17 Dec 2024
Sameh Mabrouk, Pediatrics Department, Sahloul University Hospital, Sousse, Tunisia 
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This article about “Influencing factors of health-related quality-of-life perceived by both children/adolescents patients with type-1 diabetes mellitus and their parents: A North-African study” by Ms Ben Abdesselem, is an original article that accurately evaluates the quality of life of children/adolescents ... Continue reading
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Mabrouk S. Reviewer Report For: Influencing factors of health-related quality-of-life perceived by both children/adolescents patients with type-1 diabetes mellitus and their parents: A North-African study [version 1; peer review: 2 approved]. F1000Research 2024, 13:429 (https://doi.org/10.5256/f1000research.162341.r277117)
NOTE: it is important to ensure the information in square brackets after the title is included in all citations of this article.
  • Author Response 08 Jan 2025
    IMEN BEN ABDESSELEM, Department of Physiology and Functional Explorations, Hospital Farhat HACHED, Sousse, 4002, Tunisia
    08 Jan 2025
    Author Response
    The authors sincerely thank the reviewer for her thorough and insightful feedback on our manuscript. We have carefully considered each comment and made the necessary revisions to address his concerns. ... Continue reading
COMMENTS ON THIS REPORT
  • Author Response 08 Jan 2025
    IMEN BEN ABDESSELEM, Department of Physiology and Functional Explorations, Hospital Farhat HACHED, Sousse, 4002, Tunisia
    08 Jan 2025
    Author Response
    The authors sincerely thank the reviewer for her thorough and insightful feedback on our manuscript. We have carefully considered each comment and made the necessary revisions to address his concerns. ... Continue reading

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Approved with reservations - A number of small changes, sometimes more significant revisions are required to address specific details and improve the papers academic merit.
Not approved - fundamental flaws in the paper seriously undermine the findings and conclusions
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