‘Never again will I be carefree’: a qualitative study of the impact of hypoglycemia on quality of life among adults with type 1 diabetes

IntroductionAchieving glycemic targets and optimizing quality of life (QoL) are important goals of type 1 diabetes care. Hypoglycemia is a common barrier to achieving targets and can be associated with significant distress. However, the impact of hypoglycemia on QoL is not fully understood. The aim of this study was to explore how adults with type 1 diabetes are impacted by hypoglycemia in areas of life that are important to their overall QoL.Research design and methodsParticipants responded to a web-based qualitative survey involving a novel ‘Wheel of Life’ activity. Responses were analyzed using reflexive thematic analysis.ResultsThe final sample included 219 adults with type 1 diabetes from Denmark, Germany, the Netherlands, and the UK. They had a mean±SD age of 39±13 years and diabetes duration of 20±14 years. Participants identified eight areas of life important to their overall QoL, including relationships and social life, work and studies, leisure and physical activity, everyday life, sleep, sex life, physical health, and mental health. Participants reported emotional, behavioral, cognitive, and social impacts of hypoglycemia within domains. Across domains, participants described interruptions, limited participation in activities, exhaustion, fear of hypoglycemia, compensatory strategies to prevent hypoglycemia, and reduced spontaneity.ConclusionsThe findings emphasize the profound impact of hypoglycemia on QoL and diabetes self-care behaviors. Diabetes services should be aware of and address the burden of hypoglycemia to provide person-centered care. Clinicians could ask individuals how hypoglycemia affects important areas of their lives to better understand the personal impact and develop tailored management plans.

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The Impact of Continuous Glucose Monitoring on Markers of Quality of Life in Adults With Type 1 Diabetes: Further Findings From the DIAMOND Randomized Clinical Trial

Diabetes Care ◽

10.2337/dc17-0133 ◽

2017 ◽

Vol 40 (6) ◽

pp. 736-741 ◽

Cited By ~ 89

Author(s):

William H. Polonsky ◽

Danielle Hessler ◽

Katrina J. Ruedy ◽

Roy W. Beck

Keyword(s):

Quality Of Life ◽

Clinical Trial ◽

Type 1 Diabetes ◽

Randomized Clinical Trial ◽

Continuous Glucose Monitoring ◽

Glucose Monitoring ◽

The Impact

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Poorer Quality of Life and Treatment Satisfaction is Associated with Diabetic Retinopathy in Patients with Type 1 Diabetes without Other Advanced Late Complications

Journal of Clinical Medicine ◽

10.3390/jcm8030377 ◽

2019 ◽

Vol 8 (3) ◽

pp. 377 ◽

Cited By ~ 3

Author(s):

Minerva Granado-Casas ◽

Esmeralda Castelblanco ◽

Anna Ramírez-Morros ◽

Mariona Martín ◽

Nuria Alcubierre ◽

...

Keyword(s):

Quality Of Life ◽

Type 1 Diabetes ◽

Diabetic Retinopathy ◽

Treatment Satisfaction ◽

Vision Loss ◽

Multivariable Analysis ◽

Work Life ◽

The Impact

Diabetic retinopathy (DR) may potentially cause vision loss and affect the patient’s quality of life (QoL) and treatment satisfaction (TS). Using specific tools, we aimed to assess the impact of DR and clinical factors on the QoL and TS in patients with type 1 diabetes. This was a cross-sectional, two-centre study. A sample of 102 patients with DR and 140 non-DR patients were compared. The Audit of Diabetes-Dependent Quality of Life (ADDQoL-19) and Diabetes Treatment Satisfaction Questionnaire (DTSQ-s) were administered. Data analysis included bivariate and multivariable analysis. Patients with DR showed a poorer perception of present QoL (p = 0.039), work life (p = 0.037), dependence (p = 0.010), and had a lower average weighted impact (AWI) score (p = 0.045). The multivariable analysis showed that DR was associated with a lower present QoL (p = 0.040), work life (p = 0.036) and dependence (p = 0.016). With regards to TS, DR was associated with a higher perceived frequency of hypoglycaemia (p = 0.019). In patients with type 1 diabetes, the presence of DR is associated with a poorer perception of their QoL. With regard to TS, these subjects also show a higher perceived frequency of hypoglycaemia.

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Family functioning and quality of life in adolescents with type 1 diabetes: The role of dissimilarity in illness representations and school support

Clinical Child Psychology and Psychiatry ◽

10.1177/1359104519895054 ◽

2019 ◽

Vol 25 (2) ◽

pp. 494-506

Author(s):

Ana C Almeida ◽

M Engrácia Leandro ◽

M Graça Pereira

Keyword(s):

Quality Of Life ◽

Type 1 Diabetes ◽

Family Functioning ◽

Illness Perceptions ◽

Illness Perception ◽

Negative Relationship ◽

School Support ◽

The Impact

This study analyzed the impact of dissimilarities in illness perceptions between parents and adolescents, school support, and family functioning on quality of life of adolescents with type 1 diabetes (T1D). A total of 100 adolescents diagnosed with T1D for at least 1 year and a primary caregiver participated in the study (N=200). Adolescents answered the Diabetes Quality of Life and the School Support Questionnaire, and parents answered the general functioning subscale of the Family Assessment Device. Both answered the Brief-Illness Perception Questionnaire, regarding the adolescents’ diabetes. The interception effect of dissimilarities regarding identity and concerns perceptions toward diabetes, between parents and adolescents, and school support in the relationship between family functioning and quality of life was significant and explained 27% and 32% of the variance, respectively. The results showed a negative relationship between family functioning and quality of life when school support was low and dissimilarities in identity and concerns perceptions were high. Therefore, to increase quality of life of adolescents with T1D, intervention programs should include family, teachers, school staff, and peers to improve their knowledge of diabetes and support to adolescents.

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Type 1 Diabetes Among Adolescents

The Diabetes Educator ◽

10.1177/0145721709333492 ◽

2009 ◽

Vol 35 (3) ◽

pp. 465-475 ◽

Cited By ~ 68

Author(s):

Ashley M. Di Battista ◽

Trevor A. Hart ◽

Laurie Greco ◽

Jan Gloizer

Keyword(s):

Quality Of Life ◽

Type 1 Diabetes ◽

Social Anxiety ◽

Self Care ◽

Insulin Injection ◽

Poor Quality ◽

Fear Of Hypoglycemia ◽

General Populations

Purpose The aim of this study was to examine the association between social anxiety and adherence to diabetes self-care and quality of life and to determine the effects of fear of hypoglycemia on these associations in adolescents with type 1 diabetes. It is hypothesized that (1) social anxiety will be negatively associated with adherence and quality of life and (2) that fear of hypoglycemia will mediate this relationship. It is also hypothesized that (3) girls will have higher social anxiety than boys. Methods Adolescents with type 1 diabetes were recruited during clinic visits at 2 international centers. Participants answered a survey containing questionnaires on social anxiety, behavioral adherence to the diabetes self-care regimen, quality of life, fear of hypoglycemia, and last hemoglobin A1C results. Results Seventy-six adolescents (33 boys, 43 girls), mean age 15.9 (1.44) years, participated. Social anxiety levels are not statistically different between genders. In boys, social anxiety is associated with worse diet and insulin injection adherence; no associations are found in girls. Social anxiety is positively correlated with poor quality of life in both genders. Fear of hypoglycemia mediates the relationship between social anxiety and insulin adherence in boys. Conclusions Findings suggest that social anxiety, which is common in general populations of adolescents, may interfere with behavioral adherence and quality of life among adolescents with type 1 diabetes. Screening and treatment of social anxiety may result in better adherence and increased quality of life.

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The Impact of the Brexit on the Living Standards and Quality of Life in Britain

Level of Life of the Population of Regions of Russia ◽

10.19181/lsprr/2020.16.2.5 ◽

2020 ◽

Vol 16 (2) ◽

pp. 51-60

Author(s):

Yefim S. Khesin

Keyword(s):

Quality Of Life ◽

European Union ◽

Great Britain ◽

Social Life ◽

Transition Period ◽

Well Being ◽

Living Standards ◽

The Uk ◽

The Impact

The Object of the Study. Living standards and quality of life of the population in Great Britain. The Subject of the Study. The Brexit. The Purpose of the Study is exposing the impact of the Brexit on the living standards and quality of life in the country. The Main Provisions of the Article. Following a June 2016 referendum on continued European Union membership in which 52% voted to leave and 48% voted to stay the UK government announced the country's withdrawal from the EC (Brexit). In March 2017 it formally began the withdrawal process. The withdrawal was delayed by deadlock in the UK parliament. Having failed to get her agreement with the EC approved, Theresa May resigned as Prime Minister in July 2019 and was succeeded by Boris Johnson, an active supporter of the Brexit. An early general election was then held on 12 December. The Conservatives won a large majority. As a result, the parliament ratified the withdrawal agreement, and the UK formally left the EU on 31 January 2020. This began a transition period that is set to end on 31 December 2020, during which the UK and EU will negotiate their future relationship. The first round of negotiations between London and Brussels began in March 2020. The author investigates the consequences of the withdrawal of Great Britain from the EC on the living standards and quality of life, economic situation, labour market, social policy of the government. in this country. It analyzes on the impact of the Brexit on the major elements of human capital: education, science, health, living conditions, ecology. It found that short-term forecasts of what would happen immediately after the Brexit referendum were too pessimistic. Nowadays it is very difficult to give an accurate estimate of the future effect of the Brexit on cost of living in Great Britain – many essential issues in the relations between the UK and the EC remain open. Besides, the coronavirus crisis and lockdown measures may cause the grave damage to growth and jobs. Much evidence shows that in the medium- and long-term leaving the European Union damage the British economy and thus reduce the UK's real per-capita income level and may adversely affect jobs and earnings, income and wealth, life expectancy, education and skills, academic research, health status, environmental quality and subjective well-being in the UK. Finally, the author analyses the impact on the economic and social life in Great Britain of different Brexit scenarios after the end of the transition period. The consequences will differ sharply depending on whether the UK does a Soft or Hard (no deal) Brexit.

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Assessment quality of life as a factor for the improvement of patient-focused therapy of the preschool children with type 1 diabetes

Лечащий врач ◽

10.51793/os.2021.24.12.005 ◽

2021 ◽

Author(s):

И.Л. Никитина ◽

А.О. Плаксина ◽

А.В. Павлов ◽

И.А. Кельмансон

Keyword(s):

Quality Of Life ◽

Type 1 Diabetes ◽

Preschool Children ◽

Well Being ◽

Self Report ◽

Total Quality ◽

Everyday Functioning ◽

The Impact

Оценка качества жизни с точки зрения ребенка, больного сахарным диабетом 1 типа, и его родителей имеет важность для планирования терапии, но может существенно различаться. Целью работы было оценить качество жизни детей дошкольного возраста и их матерей для оптимизации пациент-ориентированных схем лечения и улучшения метаболического контроля диабета. Обследованы 35 детей в возрасте 4-6 лет (19 мальчиков и 16 девочек), больных сахарным диабетом 1 типа, находящихся на лечении в клинике Центра. Для оценки качества жизни использовали русифицированную версию опросника KINDL для детей дошкольного возраста и их матерей. Оценка проводилась по шкалам физического и эмоционального благополучия, самооценки, семейных отношений, взаимоотношения с друзьями, ежедневного функционирования, влияния заболевания, а также суммарных показателей качества жизни по 100-балльной шкале. Статистическая обработка данных проведена с использованием прикладной программы JAMOVI 1.6. Статистически значимые различия были выявлены по шкале суммарной оценки качества жизни, а также по шкалам влияния заболевания и эмоционального благополучия на качество жизни. Установлены более низкие оценки суммарного качества жизни, а также влияния на него заболевания, по мнению матерей по сравнению с детьми с сахарным диабетом 1 типа. Напротив, оценка влияния эмоционального благополучия на качество жизни при сахарном диабете 1 типа была более высокой со стороны матерей по сравнению с их детьми. Наиболее значимое модифицирующее влияние на исследуемые показатели было установлено по факторам образования матери, семейного положения, способа введения инсулина и улучшения контроля диабета. Оценка качества жизни может различаться по мнению детей с сахарным диабетом 1 типа и их матерей. Выявленные особенности рекомендуется использовать в планировании пациент-ориентированных программ лечения диабета и в работе школ сахарного диабета. Assessment of Health Related Quality of Life (HRQoL) features frequently assesses both the child and their mothers perspectives in preschool children with diabetes mellitus type 1 (T1DM), but parent-proxy and child self-reports may differ, and knowledge of these differences are not enough. The aim was to investigate HRQoL assessed by preschool children with T1DM and by their mothers, potential differences in the children-maternal estimates and the factors influencing these discrepancies. 35 preschool children (16 girls from 4-to-6-year-old ) with T1DM underwent the self-report KINDL questionnaire for children aged 4-6 years (Kiddy-KINDL for children). Their mothers underwent the parental version (Kiddy-KINDL for parents). Both versions enable measuring child HRQoL in physical, emotional wellbeing, self-esteem, family, friends, everyday functioning, and the disease dimensions, as well as KINDL total on a 0-100 scale. Statistically significant differences were found on the scale of the total assessment of the quality of life, as well as on the scales of the impact of disease and emotional well-being on the quality of life. Lower estimates of the total quality of life, as well as the effect of the disease on it, in the opinion of mothers, compared with children with type 1 diabetes, were established. In contrast, the assessment of the impact of emotional well-being on the quality of life in type 1 diabetes was higher on the part of mothers compared to their children. The most significant modifying effect on the studied parameters was found for the factors of mother's education, marital status, method of insulin administration, and improved diabetes control. The assessment of the quality of life may differ according to the opinion of children with type 1 diabetes and their mothers. The identified features are recommended for use in planning patient-oriented diabetes treatment programs and in the work of «diabetes schools».

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Long-term impact of childhood-onset type 1 diabetes on social life, quality of life and sexuality

Diabetes & Metabolism ◽

10.1016/j.diabet.2014.12.006 ◽

2015 ◽

Vol 41 (6) ◽

pp. 489-497 ◽

Cited By ~ 8

Author(s):

H. Mellerio ◽

S. Guilmin-Crépon ◽

P. Jacquin ◽

M. Labéguerie ◽

C. Lévy-Marchal ◽

...

Keyword(s):

Quality Of Life ◽

Type 1 Diabetes ◽

Social Life ◽

Life Quality ◽

Childhood Onset ◽

Onset Type ◽

Long Term Impact

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Quality of Life and Glycemic Control in Saudi Children with Type 1 Diabetes at Different Developmental Age Groups

Clinical Medicine Insights Endocrinology and Diabetes ◽

10.1177/1179551421990678 ◽

2021 ◽

Vol 14 ◽

pp. 117955142199067

Author(s):

Amir Babiker ◽

Bothainah Al Aqeel ◽

Sarah Marie ◽

Hala Omer ◽

Aban Bahabri ◽

...

Keyword(s):

Quality Of Life ◽

Type 1 Diabetes ◽

Glycemic Control ◽

Age Groups ◽

Proxy Reports ◽

Developmental Age ◽

The Impact ◽

Domain Scores

Background: Children with type 1 diabetes (T1D) at different stages of development have age-specific needs, which can influence their perception of quality of life (QoL). In our study, we aimed to emphasize these age-specific needs and assess the perception of QoL in Saudi children with T1D, as well as their parents correlating QoL scores with children’s glycemic control. Methods: This is a cross-sectional study in which children with T1D and their parents from 2 tertiary institutes in Saudi Arabia have answered a standard diabetes-specific QoL questionnaire (PedsQL™ 3.0 diabetes module, translated in Arabic). We also reported glycated hemoglobin (HbA1c) results for these children within a month of completing the questionnaire. The QoL total aggregate and domain scores for self (children) and proxy (parents’) reports were compared and correlated with children’s HbA1c. Results: A sample was 288 self and proxy reports from 144 children with T1D of 3 age groups: 5 to 7 years (7%), 8 to 12 years (49%), and 13 to 18 years (44%), and their parents. QoL differed significantly between self and proxy reports in the total aggregate and domain scores ( P-values range from .02 to <.001). The impact on QoL was significantly higher in female patients ( P = .043). Insulin pump users had better HbA1c ( P = .007), and HbA1c level was worse in those who intended to fast at Ramadan ( P = .005). Conclusion: Children with T1D at different developmental age groups perceive QoL differently than their parents. Adjusting management as per age-specific challenges could potentially improve these children’s QoL and glycemic control.

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Fear of hypoglycaemia in patients with type 1 diabetes

Diabetes Mellitus ◽

10.14341/dm2014266-75 ◽

2014 ◽

Vol 17 (2) ◽

pp. 66-75 ◽

Cited By ~ 2

Author(s):

Evgenia Mikhailovna Patrakeeva ◽

Mariia Nikolayevna Dunicheva ◽

Alsu Gafurovna Zalevskaya

Keyword(s):

Quality Of Life ◽

Type 1 Diabetes ◽

Social Relations ◽

Social Life ◽

Internal Conflict ◽

Integral Approach ◽

Nocturnal Hypoglycaemia ◽

Negative Consequences

Independently of causes and risk factors of hypoglycaemia, its manifestations are always unfavourable and evoke fear and other negative emotions that lead to negative consequences connected with quality of diabetes control. The fear of hypoglycaemia creates an internal conflict by diminishing patients? motivation to adhere to intensive treatment regimes. In addition to the severity of hypoglycaemia and its negative consequences, quality of life is one of the main criteria for evaluating the physical, psychological and social components of patient's life as a whole. Fear of hypoglycaemia is one of the most important factors; it either directly or indirectly affects quality of life and influences all aspects of the patient's life. Fear of hypoglycaemia is also a source of anxiety for the patient's relatives, causing damage to their familial and social relations. The negative consequences of hypoglycaemia can affect the relationship between spouses, as well as between parents and children with type 1 diabetes. The qualitative and quantitative data demonstrate that non-severe nocturnal hypoglycaemia causes more anxiety and fear in patients than daytime hypoglycaemia does. To quantify the fear of hypoglycaemia in adults with type 1 diabetes, the hypoglycaemia fear scale (HFS) was developed and still is the most commonly used instrument. To assess the fear of hypoglycaemia in children and their parents, the HFS scale was adapted to be used in the paediatric population: HFS for parents (PHFS) and HFS for children (CHFS). From a clinical point of view, these scales for measuring the level of fear of hypoglycaemia may be useful for monitoring adult patients and families who may need additional support, training or assistance in dealing with issues related to hypoglycaemia. The methods for regulating the fear of hypoglycaemia range from behavioural to pharmaceutical and surgical ones, and include a broad range of activities. Nevertheless, the problem remains quite relevant today and an integral approach for solving this problem, both by the physician and by the patient, should be used. Proper assessment of the patient's level of anxiety, impact of the fear of hypoglycaemia on his or her social life, awareness of the possible psychological consequences of this problem may positively affect both the behaviour and mood of the patient, and the opportunity to achieve better glycaemic control.

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