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Inclusive horizons: charting a supportive path for type 1 diabetes care in India: a TiEUP collaborative white paper
Abstract
Schools, workplaces, and society play a critical role in providing a safe and supportive environment to individuals with type 1 diabetes mellitus (T1DM). However, for many people with T1DM in India, this still remains elusive.
This white paper, led by distinguished experts from TiEUP, a national conclave for T1DM in India, thoroughly summarizes the multifaceted challenges faced in various settings, including schools, examination halls, workplaces, and society. It highlights the imperative nature of legal frameworks that need to be developed to protect the rights of these individuals.
The paper thoroughly explores the psychosocial impact of diabetes and the negative outcomes of societal stigma. The white paper is an appeal for action, raising awareness and sensitizing the community to ensure that people with T1DM receive appropriate assistance for diabetes management while being exempt from any form of discrimination or disadvantage in any sphere of life.
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Purpose of the review:
Current global information on incidence, prevalence, and mortality of type 1 diabetes (T1D) is limited, particularly in low- and middle-income countries. To address this gap in evidence, JDRF, Life for a Child, International Society for Pediatric and Adolescent Diabetes, and International Diabetes Federation have developed the T1D Index, which uses a Markov mathematical model, and machine learning and all available data to provide global estimates of the burden on T1D. This review assesses the methodology, limitations, current findings, and future directions of the Index.
Recent findings:
Global prevalence was estimated at 8.4 million in 2021, with 1.5 million <20 years (y). T1D prevalence varied from 1.5 to 534 per 100,000, with T1D accounting for <0.1-17.8% of all diabetes in different countries. A total of 35,000 young people <25 y are estimated to have died at clinical onset of T1D from non-diagnosis. An estimated 435,000 people <25 y were receiving "minimal care." Health-adjusted life years (HALYs) lost for individuals diagnosed with T1D at age 10 y in 2021 ranged from 14 to 55 y. These results show that interventions to reduce deaths from non-diagnosis, and improve access to at least an intermediate care level, are needed to reduce projected life years lost. The results have significant uncertainties due to incomplete data across the required inputs. Obtaining recent incidence, prevalence, and mortality data, as well as addressing data quality issues, misdiagnoses, and the lack of adult data, is essential for maintaining and improving accuracy. The index will be updated regularly as new data become available.
Introduction
A structured dedicated health programme for Type 1 diabetes mellitus (T1DM) has been initiated in the state of West Bengal, India.
Aim
The aim is to provide comprehensive healthcare to all children, adolescents and young adults living with T1DM, along with the provision of free supply of insulin, glucose measuring devices, blood glucose test strips, and other logistics. The strategic framework for programme implementation is to utilise the infrastructure and manpower of the already existing non-communicable disease (NCD) clinic under National Health Mission.
Methodology
Establishing dedicated T1DM clinics in each district hospital by utilising existing healthcare delivery systems, intensive training and hand-holding of named human resources; providing comprehensive healthcare service and structured diabetes education to all T1DM patients; and building an electronic registry of patients are important components of the programme. T1DM clinics run once a week on the same day throughout the state. All T1DM patients are treated with the correct dose of insulin, both human regular insulin and glargine insulin. Patients are routinely monitored monthly to ensure good glycaemic control and prevent complications of the disease. Routine anthropometric examination and required laboratory investigations are conducted in the set-up of the already existing NCD clinic. Ongoing monitoring and evaluation of the T1DM programme are being conducted in terms of glycated haemoglobin (HbA1c) values, growth and development, complication rates, psychological well-being, quality of life, and direct and indirect expenditure incurred by families. Through this programme, any bottlenecks or gaps in service delivery will be identified and corrective measures will be adopted to ensure better health outcomes for those living with T1DM.
Introduction
User designed Automated Insulin Delivery systems (AID), termed Do-It-Yourself (DIY) AID include; AndroidAPS, OpenAPS and Loop. These unregulated systems provide challenges for healthcare providers worldwide, with potential legal and ethical barriers to supporting their use. We performed a scoping review of the currently available literature surrounding DIY AID systems, specifically to highlight the evidence available to facilitate healthcare providers to support persons with diabetes who may benefit from DIY AID.
Methods
Studies relating to DIY AID systems were searched in Embase, Medline, Web of Science, Scopus, Proquest and Cochrane library until 31st December 2021. Publications were screened through title and abstract to identify study type and AID system type described. A thematic synthesis methodology was used for analysis of studies of DIY AID use due to the heterogeneity in study designs (case reports, qualitative, cross-sectional and cohort studies), with similarity in outcome themes.
Results
Following implementation of the search strategy, 38 relevant full texts were identified; comprising 12 case reports, 9 qualitative studies and 17 cohort studies, and data was also available from 24 relevant conference abstracts. No randomized studies were identified. Common themes were identified in the outcomes across the studies; glycemic variability, safety, quality of life, healthcare provider attitudes and social media.
Conclusion
There is extensive real-world data, but a lack of randomized control trial evidence supporting DIY AID system use, due to the user-driven, unregulated nature of these systems. Healthcare providers report a lack of understanding surrounding, and confidence in supporting, DIY AID despite impressive observational and user self-reported improvements in glycemic variability, without any reported safety compromises.
The digitization of healthcare and its usage in the delivery of healthcare have experienced exponential growth across the world in recent times. India’s fast-growing diabetes population has been exerting immense pressure on the country’s healthcare infrastructure. Various innovative and evolving technologies are converging to impact the trajectory of digital health in diabetes. The diabetes community has been adopting various technologies such as connected glucose meters, continuous glucose monitoring systems, continuous subcutaneous insulin infusion, closed-loop systems, digitalization of health data, and diabetes-related apps for the prevention and management of the condition. India has provided some excellent examples in exploiting the potential of digital transformation in revamping the diabetes ecosystem. Yet, there are still various hurdles in technology development, healthcare delivery, as well as concerns related to data privacy, digital divide, policies by the government, role of stakeholders, attitude, and absorption by healthcare professionals, and hospitals. This article provides an overview of the digital diabetes technologies currently practiced in India and recommends the need for strong technology adaptation and policy interventions for an ideal roadmap of digitalization of diabetes care in the Indian milieu.
Objectives
Children with type 1 diabetes (T1D) need a supportive, non-stigmatizing school environment for self-care activities such as checking blood glucose (BG) and taking pre-meal insulin. Data about T1D self-care in schools in developing countries are scarce. We looked at diabetes self-care activities at school, and attitudes of school staff toward diabetes care.
Material and Methods
We interviewed, over an 8-week period, consecutive patient-parent dyads attending T1D clinics in North (Delhi, Gurgaon, and Kanpur), West (Aurangabad), and South (Hyderabad) India.
Results
We received responses from 397 patients, 51% of boys. Mean age was 11.7 years (SD: 3.7), mean age at diagnosis 7.2 years (SD: 3.7), and mean diabetes duration 4.5 years (SD: 3.5). A majority (69.8%) were attending private (fee paying) schools (PS) and the rest were studying at government (subsidized/free) schools (GS). More than half of the parents had high educational status: graduate or more (mothers: 52.1%, fathers: 56.9%). Parents visited school daily in 17.1%, significantly more if they had high educational status and if the child was <6 years. Less than half (47.4%) were administering a pre-meal insulin bolus at school (self-injection: 33%, by parent: 12.9%, and by staff: 1.5%); only 24.4% were checking BG regularly (< once per week) at school. The odds of performing diabetes self-care activities at school were significantly higher in children attending PS compared to GS (OR: 3.17, 95% CI: 1.99–5.03 for taking insulin, OR: 3.24, 95% CI: 1.75–5.98 for regular BG checking). The odds of taking insulin at school were also higher with higher parental education (OR: 2.81, 95% CI: 1.87–4.24 for mother’s education, OR: 3.02, 95% CI: 1.99–4.57 for father’s). Testing and injecting we done in classroom (26.2%); medical room (16.1%), staffroom (7.8%), or toilet (2.5%). School insisted on secrecy in 12.6%, excluded children with T1D from sports/excursions in 17.9%, refused permission for injecting in 4.3%, for testing 15.9%, and for pre-activity snack 7.6%. This non-supportive behavior was equal in PS and GS. PS had slightly better care infrastructure such as availability of glucometer (29.6% vs. 3.3%), sick room (21.7% vs. 0.3%), and dedicated nurse (9.7% vs. none).
Conclusion
Half of our children were able to manage T1D self-care in school, as schools were often supportive, whether private or government. Parental educational status was positively associated with better care. Although self-care was better in PS and they had better infrastructure, there is much scope for improvement.
Objective
To investigate gender discrimination in access to healthcare and its relationship with the patient’s age and distance from the healthcare facility.
Design and setting
An observational study based on outpatient data from a large referral public hospital in Delhi, India.
Participants
Confirmed clinical appointments.
Primary and secondary outcome measures
Estimates from the logistic regression are used to compute sex ratios (male/female) of patient visits with respect to distance from the hospital and age. Missing female patients for each state—a measure of the extent of gender discrimination—is computed as the difference in the actual number of female patients who came from each state and the number of female patients that should have visited the hospital had male and female patients come in the same proportion as the sex ratio of the overall population from the 2011 census.
Results
Of 2377028 outpatient visits, excluding obstetrics and gynaecology patients, the overall sex ratio was 1.69 male to one female visit. Sex ratios, adjusted for age and hospital department, increased with distance. The ratio was 1.41 for Delhi, where the facility is located; 1.70 for Haryana, an adjoining state; 1.98 for Uttar Pradesh, a state further away; and 2.37 for Bihar, the state furthest from Delhi. The sex ratios had a U-shaped relationship with age: 1.93 for 0–18 years, 2.01 for 19–30 years, and 1.75 for 60 years or over compared with 1.43 and 1.40 for the age groups 31–44 and 45–59 years, respectively. We estimate there were 402 722 missing female outpatient visits from these four states, which is 49% of the total female outpatient visits for these four states.
Conclusion
We found gender discrimination in access to healthcare, which was worse for female patients who were in the younger and older age groups, and for those who lived at increasing distances from the hospital.
In India, manufacturing, storing, transportation, distribution, and dispensing of drugs are licensed and regulated under the drugs and cosmetic act, 1940; Indian Medical Council Act, 1956; the Pharmacy Act, 1948; and the Narcotic Drugs and Psychotropic Substances Act, 1985. Prescribing and dispensing medicines at the same time to their patients by registered medical practitioners (RMPs) is a well-known practice in all systems of medicine across the country. Further, the kind of branded medicines a patient gets from the clinics will come wrapped in a huge profit margin for RMPs, and this has been an alternative source of income to them. Dispensing and selling of medicines by RMPs at their clinics to their patients may represent a significant potential conflict of interest with the medical ethical principles, namely autonomy, beneficence, and non-maleficence and it raises various ethical and legal challenges. This article focuses on the ethical and legal issues of this practice and emphasizes the need for a proactive and dynamic approach to meet the rising demand for quality healthcare in India.
Refined recommendations on intensive regimens for differential substitution of basal and prandial insulin.
Review of the role of new insulin analogs, biosimilars and devices for insulin therapy in pediatric diabetology are included.
This article is protected by copyright. All rights reserved.
Type 1 diabetes is a challenging illness and needs lifelong diabetes self-care. At the same time, there is a significant stigma associated with it, especially with relation to marriage. There are concerns related to premarriage disclosure, marital relationship, ability to procreate, risk during pregnancy in women, and the risk of disease in children. In this document, we discuss the issue of disease-related stigma which may become a significant challenge for a prospective spouse and the impact of type 1 diabetes on marital relationships and procreation. We also highlight the need for premarriage counseling to ensure long-term success in achieving both individual and interpersonal well-being.
Objectives
To explore the possible reasons for concealing type 1 diabetes (T1D) at work.
Methods
The main set of data came from a cross-sectional survey (response rate 49.3%), the participants of which were 688 wage earners with T1D. Concealment of T1D was measured by asking respondents have they ever during their working career hidden their diabetes from their (A) colleagues and (B) line manager. Furthermore, semistructured interviews (n=20) were conducted to obtain deeper understanding. Questionnaire data were analysed using logistic regression analyses and qualitative interviews with inductive thematic analysis.
Results
About 30% of wage earners with T1D had concealed their condition during their working career from their colleagues and almost 20% from their line manager. Individuals aged 18–44 years age were more likely to conceal their T1D from their colleagues than older workers during their working career. Not disclosing T1D to the extended family (OR 5.24 (95% CI 2.06 to 13.35)), feeling an outsider at work (OR 2.47 (95% CI 1.58 to 3.84)), being embarrassed by receiving special attention at work (OR 1.99 (95% CI 1.33 to 2.96)) and neglecting treatment at work (OR 1.59 (95% CI 1.01 to 2.48)) were all associated with concealment of T1D from colleagues. The youngest age group of 18–24 years were more likely to conceal their T1D from their line managers than the older age groups during their working career. Not disclosing T1D to the extended family (OR 4.41 (95% CI 1.72 to 11.32)), feeling like an outsider at work (OR 2.51 (1.52 to 4.14)) and being embarrassed by receiving special attention at work (OR 1.81 (95% CI 1.13 to 2.91)) were associated with concealment of T1D from line managers. From the interviews, five main themes related to concealment emerged, expressing fears related to the consequences of telling: (1) being perceived as weak, (2) job discrimination, (3) unwanted attention, (4) being seen as a person who uses their T1D for seeking advantages and (5) losing privacy.
Conclusions
A considerable proportion of wage earners with T1D are concealing their diagnosis often because of feelings associated with stigma. Both overemphasis and underestimation of T1D at work by the colleagues or line manager may lead to concealing T1D and may thus be harmful to self-management of T1D. The obstacles in disclosing T1D might be diminished by giving adequate information at the workplace about the condition and its significance.
Objective:
The goal of this study was to understand how adults with diabetes experience the words used in diabetes care.
Methods:
This qualitative study guided by Critical Theory used two virtual and two in-person focus groups conducted by the same facilitator. A total of 68 focus group members participated. The facilitator transcribed and coded focus group data using individual responses as the unit of analysis. The facilitator used constant comparison to analyze responses and developed a research summary of themes that emerged. A second coder confirmed the themes originally identified, and participants provided feedback on the summary.
Results:
Many negative and stigmatizing words are used in diabetes care. Several themes emerged from the data, including judgment; fear and anxiety; labels, reminders, and assumptions; oversimplification and directives; misunderstanding, misinformation, and disconnection; and body language and tone. Participants reported experiencing negative diabetes-related words in the general public, with their health care providers (HCPs), and in the media. Participants made suggestions for HCPs to replace negative words; they raised a concern that current negative words will be replaced by others with similar negative connotations; and they said they would feel more like a partner in their care if HCPs stopped using these words.
Conclusion:
The language used in diabetes care has an impact on people who live with the disease. Awareness is the first step in eradicating stigma in diabetes care. HCPs can improve patient-provider communication and contribute to a more positive experience for people living with diabetes by choosing words that empower.
To investigate whether perceptions of task difficulty on neuropsychological tests predicted academic achievement after controlling for glucose levels and depression.
Participants were type 1 diabetic adolescents, with a mean age = 12.5 years (23 females and 16 males), seen at a northwest suburban Chicago hospital. The sample population was free of co-morbid clinical health conditions. Subjects completed a three-part neuropsychological battery including the Digit Symbol Task, Trail Making Test, and Controlled Oral Word Association test. Following each task, individuals rated task difficulty and then completed a depression inventory. Performance on these three tests is reflective of neuropsychological status in relation to glucose control. Blood glucose levels were measured immediately prior to and after completing the neuropsychological battery using a glucose meter. HbA1c levels were obtained from medical records. Academic performance was based on self-reported grades in Math, Science, and English. Data was analyzed using multiple regression models to evaluate the associations between academic performance, perception of task difficulty, and glucose control.
Perceptions of difficulty on a neuropsychological battery significantly predicted academic performance after accounting for glucose control and depression. Perceptions of difficulty on the neuropsychological tests were inversely correlated with academic performance (r = -0.48), while acute (blood glucose) and long-term glucose levels increased along with perceptions of task difficulty (r = 0.47). Additionally, higher depression scores were associated with poorer academic performance (r = -0.43). With the first regression analysis, perception of difficulty on the neuropsychological tasks contributed to 8% of the variance in academic performance after controlling for peripheral blood glucose and depression. In the second regression analysis, perception of difficulty accounted for 11% of the variance after accounting for academic performance and depression. The final regression analysis indicated that perception of difficulty increased with peripheral blood glucose, contributing to 22% of the variance. Most importantly, after controlling for perceptions of task difficulty, academic performance no longer predicted glucose levels. Finally, subjects who found the cognitive battery difficult were likely to have poor academic grades.
Perceptions of difficulty on neurological tests exhibited a significant association with academic achievement, indicating that deficits in this skill may lead to academic disadvantage in diabetic patients.
Although several evidence-based guidelines for managing diabetes are available, few, if any, focus on the psychosocial aspects of this challenging condition. It is increasingly evident that psychosocial treatment is integral to a holistic approach of managing diabetes; it forms the key to realizing appropriate biomedical outcomes. Dearth of attention is as much due to lack of awareness as due to lack of guidelines. This lacuna results in diversity among the standards of clinical practice, which, in India, is also due to the size and complexity of psychosocial care itself. This article aims to highlight evidence- and experience-based Indian guidelines for the psychosocial management of diabetes. A systemic literature was conducted for peer-reviewed studies and publications covering psychosocial aspects in diabetes. Recommendations are classified into three domains: General, psychological and social, and graded by the weight they should have in clinical practice and by the degree of support from the literature. Ninety-four recommendations of varying strength are made to help professionals identify the psychosocial interventions needed to support patients and their families and explore their role in devising support strategies. They also aid in developing core skills needed for effective diabetes management. These recommendations provide practical guidelines to fulfill unmet needs in diabetes management, and help achieve a qualitative improvement in the way physicians manage patients. The guidelines, while maintaining an India-specific character, have global relevance, which is bound to grow as the diabetes pandemic throws up new challenges.
Diabetes management in children extends from the home to other settings where children spend a significant portion of their waking hours. For young children (generally, aged <5 years) with diabetes, this includes childcare centers. Given their age and developmental stage, young children require a carefully thought-out, proactive diabetes care plan for the childcare setting, developed jointly by the health care provider and parents/guardians, and implemented by childcare staff. In the U.S., federal laws and some state laws protect the rights of children with diabetes in childcare and other settings to ensure they receive appropriate assistance with the diabetes management and care. This American Diabetes Association (ADA) Statement addresses the legal rights of children in the childcare setting, outlines the current best practices for diabetes care, and provides resources and responsibilities for parents/guardians, childcare providers, and health care providers. The ADA intends for these tools and information to support the health and well-being of young children with diabetes and offer helpful guidance to those caring for them.
The Global Diabetes Compact is a WHO-driven initiative uniting stakeholders around goals of reducing diabetes risk and ensuring that people with diabetes have equitable access to comprehensive, affordable care and prevention. In this report we describe the development and scientific basis for key health metrics, coverage, and treatment targets accompanying the Compact. We considered metrics across four domains: factors at a structural, system, or policy level; processes of care; behaviours and biomarkers such as glycated haemoglobin (HbA1c); and health events and outcomes; and three risk tiers (diagnosed diabetes, high risk, or whole population), and reviewed and prioritised them according to their health importance, modifiability, data availability, and global inequality. We reviewed the global distribution of each metric to set targets for future attainment. This process led to five core national metrics and target levels for UN member states: (1) of all people with diabetes, at least 80% have been clinically diagnosed; and, for people with diagnosed diabetes, (2) 80% have HbA1c concentrations below 8·0% (63·9 mmol/mol); (3) 80% have blood pressure lower than 140/90 mm Hg; (4) at least 60% of people 40 years or older are receiving therapy with statins; and (5) each person with type 1 diabetes has continuous access to insulin, blood glucose meters, and test strips. We also propose several complementary metrics that currently have limited global coverage, but warrant scale-up in population-based surveillance systems. These include estimation of cause-specific mortality, and incidence of end-stage kidney disease, lower-extremity amputations, and incidence of diabetes. Primary prevention of diabetes and integrated care to prevent long-term complications remain important areas for the development of new metrics and targets. These metrics and targets are intended to drive multisectoral action applied to individuals, health systems, policies, and national health-care access to achieve the goals of the Global Diabetes Compact. Although ambitious, their achievement can result in broad health benefits for people with diabetes.
OBJECTIVE
School nurses are integral to optimizing diabetes management for students with type 1 diabetes. The aim of this study was to describe the use of diabetes technology in schools over time and assess school nurses’ comfort level performing diabetes management tasks.
STUDY DESIGN
From 2012 to 2019, school nurses who attended a diabetes education program completed a survey about their experience and comfort level with diabetes management.
RESULTS
A total of 1,796 school nurses completed the survey; 56% had at least 5 years of school nursing experience. Most (86%) had at least one student with type 1 diabetes. Among school nurses with at least one student with type 1 diabetes, 73% had at least one student using insulin pump therapy, and 48% had at least one student using continuous glucose monitoring (CGM). There was no change in pump use over time, but the percentage of nurses who had a student using CGM increased significantly from 24% in 2012 to 86% in 2019 (P <0.001). School nurses’ comfort level using pumps remained stable over time. Overall, 47% reported being mostly/very comfortable giving boluses using a pump, and 17% reported being mostly/very comfortable troubleshooting problems with a pump. However, there was a significant increase in school nurses reporting feeling mostly/very comfortable working with CGM devices, increasing from 9% in 2012 to 44% in 2019 (P <0.001).
CONCLUSION
School nurses are an important part of diabetes management for school-aged youth with type 1 diabetes. There is a need for additional diabetes education and support to build their confidence with diabetes management and technology, especially with further technological advancements in management.
Background
Accurate data on type 1 diabetes prevalence, incidence, associated mortality and life expectancy are crucial to inform public health policy, but these data are scarce. We therefore developed a model based on available data to estimate these values for 201 countries for the year 2021 and estimate the projected prevalent cases in 2040.
Methods
We fitted a discrete-time illness-death model (Markov model) to data on type 1 diabetes incidence and type 1 diabetes-associated mortality to produce type 1 diabetes prevalence, incidence, associated mortality and life expectancy in all countries. Type 1 diabetes incidence and mortality data were available from 97 and 37 countries respectively. Diagnosis rates were estimated using data from an expert survey. Mortality was modelled using random-forest regression of published type 1 diabetes mortality data, and life expectancy was calculated accordingly using life tables. Estimates were validated against observed prevalence data for 15 countries. We also estimated missing prevalence (the number of additional people who would be alive with type 1 diabetes if their mortality matched general population rates).
Findings
In 2021, there were about 8·4 (95% uncertainty interval 8·1–8·8) million individuals worldwide with type 1 diabetes: of these 1·5 million (18%) were younger than 20 years, 5·4 million (64%) were aged 20–59 years, and 1·6 million (19%) were aged 60 years or older. In that year there were 0·5 million new cases diagnosed (median age of onset 39 years), about 35 000 non-diagnosed individuals died within 12 months of symptomatic onset. One fifth (1·8 million) of individuals with type 1 diabetes were in low-income and lower-middle-income countries. Remaining life expectancy of a 10-year-old diagnosed with type 1 diabetes in 2021 ranged from a mean of 13 years in low-income countries to 65 years in high-income countries. Missing prevalent cases in 2021 were estimated at 3·7 million. In 2040, we predict an increase in prevalent cases to 13·5–17·4 million (60–107% higher than in 2021) with the largest relative increase versus 2021 in low-income and lower-middle-income countries.
Interpretation
The burden of type 1 diabetes in 2021 is vast and is expected to increase rapidly, especially in resource-limited countries. Most incident and prevalent cases are adults. The substantial missing prevalence highlights the premature mortality of type 1 diabetes and an opportunity to save and extend lives of people with type 1 diabetes. Our new model, which will be made publicly available as the Type 1 Diabetes Index model, will be an important tool to support health delivery, advocacy, and funding decisions for type 1 diabetes.
Funding
JDRF International.
Many nations struggle to provide adequate diabetes care. Legal as well as moral obligations may facilitate access. International human rights law places obligations on governments to ensure the accessibility and affordability of insulin (a World Health Organization essential medicine), and other components of diabetes care. Despite this obligation, the global reality is that access remains deficient. A human rights approach facilitating the improvement of diabetes services and equitable access to insulin provides a strong framework, theoretically and practically, for advocacy and policymaking changes. This approach links governments to their international obligations, fosters the ideal of, and adherence to, national essential medicine lists, complements the pursuit of international goals in non-communicable diseases, and should influence the actions of pharmaceutical and device companies. This approach empowers patients, families, and communities living with diabetes, and grounds actions by governments, clinicians, and non-government organisations in the principles of dignity, non-discrimination, and equity of access.
Background
For people with diabetes mellitus to achieve optimal glycaemic control, motivation to perform self-management is important. The research team wanted to determine whether or not psychological interventions are clinically effective and cost-effective in increasing self-management and improving glycaemic control.
Objectives
The first objective was to determine the clinical effectiveness of psychological interventions for people with type 1 diabetes mellitus and people with type 2 diabetes mellitus so that they have improved (1) glycated haemoglobin levels, (2) diabetes self-management and (3) quality of life, and fewer depressive symptoms. The second objective was to determine the cost-effectiveness of psychological interventions.
Data sources
The following databases were accessed (searches took place between 2003 and 2016): MEDLINE, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Cochrane Library, PsycINFO, EMBASE, Cochrane Controlled Trials Register, Web of Science, and Dissertation Abstracts International. Diabetes conference abstracts, reference lists of included studies and Clinicaltrials.gov trial registry were also searched.
Review methods
Systematic review, aggregate meta-analysis, network meta-analysis, individual patient data meta-analysis and cost-effectiveness modelling were all used. Risk of bias of randomised and non-randomised controlled trials was assessed using the Cochrane Handbook (Higgins JP, Altman DG, Gøtzsche PC, Jüni P, Moher D, Oxman AD, et al. The Cochrane Collaboration’s tool for assessing risk of bias in randomised trials. BMJ 2011; 343 :d5928).
Design
Systematic review, meta-analysis, cost-effectiveness analysis and patient and public consultation were all used.
Setting
Settings in primary or secondary care were included.
Participants
Adolescents and children with type 1 diabetes mellitus and adults with types 1 and 2 diabetes mellitus were included.
Interventions
The interventions used were psychological treatments, including and not restricted to cognitive–behavioural therapy, counselling, family therapy and psychotherapy.
Main outcome measures
Glycated haemoglobin levels, self-management behaviours, body mass index, blood pressure levels, depressive symptoms and quality of life were all used as outcome measures.
Results
A total of 96 studies were included in the systematic review ( n = 18,659 participants). In random-effects meta-analysis, data on glycated haemoglobin levels were available for seven studies conducted in adults with type 1 diabetes mellitus ( n = 851 participants) that demonstrated a pooled mean difference of –0.13 (95% confidence interval –0.33 to 0.07), a non-significant decrease in favour of psychological treatment; 18 studies conducted in adolescents/children with type 1 diabetes mellitus ( n = 2583 participants) that demonstrated a pooled mean difference of 0.00 (95% confidence interval –0.18 to 0.18), indicating no change; and 49 studies conducted in adults with type 2 diabetes mellitus ( n = 12,009 participants) that demonstrated a pooled mean difference of –0.21 (95% confidence interval –0.31 to –0.10), equivalent to reduction in glycated haemoglobin levels of –0.33% or ≈3.5 mmol/mol. For type 2 diabetes mellitus, there was evidence that psychological interventions improved dietary behaviour and quality of life but not blood pressure, body mass index or depressive symptoms. The results of the network meta-analysis, which considers direct and indirect effects of multiple treatment comparisons, suggest that, for adults with type 1 diabetes mellitus (7 studies; 968 participants), attention control and cognitive–behavioural therapy are clinically effective and cognitive–behavioural therapy is cost-effective. For adults with type 2 diabetes mellitus (49 studies; 12,409 participants), cognitive–behavioural therapy and counselling are effective and cognitive–behavioural therapy is potentially cost-effective. The results of the individual patient data meta-analysis for adolescents/children with type 1 diabetes mellitus (9 studies; 1392 participants) suggest that there were main effects for age and diabetes duration. For adults with type 2 diabetes mellitus (19 studies; 3639 participants), baseline glycated haemoglobin levels moderated treatment outcome.
Limitations
Aggregate meta-analysis was limited to glycaemic control for type 1 diabetes mellitus. It was not possible to model cost-effectiveness for adolescents/children with type 1 diabetes mellitus and modelling for type 2 diabetes mellitus involved substantial uncertainty. The individual patient data meta-analysis included only 40–50% of studies.
Conclusions
This review suggests that psychological treatments offer minimal clinical benefit in improving glycated haemoglobin levels for adults with type 2 diabetes mellitus. However, there was no evidence of benefit compared with control interventions in improving glycated haemoglobin levels for people with type 1 diabetes mellitus.
Future work
Future work should consider the competency of the interventionists delivering a therapy and psychological approaches that are matched to a person and their life course.
Study registration
This study is registered as PROSPERO CRD42016033619.
Funding
This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment ; Vol. 24, No. 28. See the NIHR Journals Library website for further project information.
Type 1 diabetes mellitus (T1DM) results from the destruction of pancreatic β-cells that is mediated by the immune system. Multiple genetic and environmental factors found in variable combinations in individual patients are involved in the development of T1DM. Genetic risk is defined by the presence of particular allele combinations, which in the major susceptibility locus (the HLA region) affect T cell recognition and tolerance to foreign and autologous molecules. Multiple other loci also regulate and affect features of specific immune responses and modify the vulnerability of β-cells to inflammatory mediators. Compared with the genetic factors, environmental factors that affect the development of T1DM are less well characterized but contact with particular microorganisms is emerging as an important factor. Certain infections might affect immune regulation, and the role of commensal microorganisms, such as the gut microbiota, are important in the education of the developing immune system. Some evidence also suggests that nutritional factors are important. Multiple islet-specific autoantibodies are found in the circulation from a few weeks to up to 20 years before the onset of clinical disease and this prediabetic phase provides a potential opportunity to manipulate the islet-specific immune response to prevent or postpone β-cell loss. The latest developments in understanding the heterogeneity of T1DM and characterization of major disease subtypes might help in the development of preventive treatments.
Diabetes is one of the most common chronic diseases of childhood (1). There are approximately 200,000 individuals,20 years of age with diabetes in the U. S. (2). The SEARCH for Diabetes in Youth (SEARCH) study recently reported that 1.93 per 1,000 (aged,20 years) were diagnosed with type 1 diabetes, an increase of 21% from 2001 to 2009. Increases in the prevalence of type 1 diabetes were seen in all ethnic groups, but non-Hispanic whites were disproportionately affected. Because type 2 diabetes rarely occurs in younger children, its prevalence in the population aged, 20 years is not readily available. For type 2 diabetes in youth between 10 and 20 years of age, the SEARCH study reported a prevalence of 0.46 per 1,000 youth of all ethnicities, an increase of 31% from 2001 to 2009 (3). These statistics demonstrate the rising prevalence of diabetes in children and the increased need for diabetes management. The majority of young people with diabetes spend many hours at school and/or in some type of child care program. Trained and knowledgeable staff are essential to provide a safe school and child care environment for children with diabetes. This includes the provision of care during the school day, field trips, and all school-sponsored activities in the school setting and in preschool, day care, and camp programs in the child care setting. Staff play a critical role in helping to reduce the risk of short-and long-term complications of diabetes and ensuring that children are well-positioned for academic success and normal growth and development. The child's parents/guardians and health care provider(s) should work together to provide school systems and child care providers with the information necessary to enable children with diabetes to participate fully and safely in the school and child care setting experiences (4-6). The purpose of this position statement is to provide the diabetes management recommendations for students with diabetes in the elementary and secondary school settings based on the American Diabetes Association's (ADA's) " Standards of Medical Care in Diabetesd2015" (6) and " Type 1 Diabetes Through the Life Span: A Position Statement of the American Diabetes Association" (7). For information on young children aged, 5 years, ADA's position statement " Care of Young ChildrenWith Diabetes in the Child Care Setting" (8) should be reviewed for specific recommendations for settings such as day care centers, preschools, camps, and other programs.
Stringent monitoring of blood glucose in diabetes plays an important role as the treatment of the disease itself. Blood glucose monitoring (BGM) strategies such as measurement of Hb1Ac, Self-Monitoring of Blood Glucose (SMBG) and Continuous Glucose Monitoring (CGM) plays a vital role in achieving the important goal of preventing long term complications of diabetes. Although the use of BGM is recommended by various international guidelines in T1DM and T2DM, there is no consensus on the utility of BGM in India. So, there is a need to develop a guidance for uniform monitoring mechanism among the care givers taking into account the variations and challenges that are unique to Indian population. A committee was established that comprised of physicians, researchers and other healthcare professionals having expertise in diabetes treatment to oversee the formulation of guidelines on different monitoring and treatment aspects of diabetes. Extensive literature searches were conducted to identify and analyze the evidence available on BGM. An initial draft of BGM guidelines was presented to core members who discussed the subject matter and presented their opinion. This was then taken to wider expert audience to invite their comments that were incorporated in the initial draft. The first compilation was presented at a conference attended by nearly 200 experts. Again, their opinion was sought and the next version was prepared which was sent to core committee members for the final inputs. The Indian consensus guideline on BGM using Hb1Ac, SMBG and CGM as the primary tools was then finalized.
Despite a rise in the incidence of juvenile diabetes globally, little research has focused on public perceptions regarding its patients. The need to evaluate whether the public holds stigmatizing views is pressing when one considers the relatively young age of the patients of the disease. The current study extends the attribution theoretic framework to evaluate public stigma regarding juvenile diabetes. The findings suggest that a large percentage of individuals misattribute the causes of the disease and believe it is relatively rare and that its patients are personally responsible for contracting it. Individuals often utilize pejorative terms describing juvenile diabetes as a disease afflicting children who are lazy, unhealthy, fat, obese, lacking exercise, and having eating disorders.
Though the treatment of diabetes has advanced remarkably, the law and many employers have not always kept pace. New insulins, delivery systems, and monitoring systems give people with diabetes exceptional control over their blood sugar and virtually eliminate serious complications such as hypoglycemia and hyperglycemia. Changes in the law, particularly the Americans with Disabilities Act and its 2008 amendments, give people with diabetes greater rights and employment opportunities than ever before. Despite these advances, many employers continue to use blanket bans or ill-considered standards to bar people with diabetes. Efforts to break down these remaining barriers are ongoing through employee litigation and through the American Diabetes Association's collaboration with entities that set occupational standards.
The purpose of this study was to explore the psychosocial impact of type 1 diabetes (T1DM) on low-income families of various racial/ethnic backgrounds.
A qualitative study using qualitative descriptive methods was conducted with a total of 21 patient-parent dyads from African American, Hispanic, and white heritage, respectively. An interview guide was developed to explore each family's attitudes and beliefs related to diabetes.
Although all subjects were in excellent metabolic control (mean A1C levels were between 7.3% and 7.6%), there were a number of identifiable differences in the perception of the impact of T1DM among the 3 groups. Themes in the data demonstrated differences in the following areas: (1) view of diabetes and its effects on the family; (2) ability to successfully treat diabetes; (3) ability to cope with diabetes; and (4) experiences with the health care system. Most notable themes include a disparity across racial/ethnic groups in the preoccupation with the disease after diagnosis, cultural and financial factors identified, and differences in treatment modalities and reasons for their use.
Diabetes education and care need to carefully address such differences. Although these differences are likely multifactorial, with components of socioeconomic status, family structure, and family experiences involved, it is evident that ethnicity itself is an important factor that can affect the ability of families to manage and cope with diabetes.
The aim of this study was to correlate the frequency of self-monitoring of blood glucose (SMBG) to the quality of metabolic control as measured by hemoglobin A1c (HbA1c), the frequency of hypoglycemia and ketoacidosis, and to see whether the associations between SMBG and these outcomes are influenced by the patient's age or treatment regime. We analyzed data from the DPV-Wiss-database of 26 723 children and adolescents aged 0-18 yr with type 1 diabetes recorded during 1995-2006. Variables evaluated were gender, age at visit, diabetes duration, therapy regime, insulin dose, body mass index-standard deviation scores (BMI-SDS), HbA1c, rate of hypoglycemia, and ketoacidosis. In the youngest age group of children under the age of 6 yr, the frequency of SMBG was the highest compared with that in children aged 6-12 yr or children aged > 12 yr: 6.0/d vs. 5.3/d vs. 4.4/d (p < 0.001). Frequency of SMBG differed significantly also in the different groups of treatment (p < 0.001), but only for the continuous subcutaneous insulin infusion (CSII) group the frequency was considerably higher: 5.3/d (CSII) vs. 4.7/d (multiple daily injections) vs. 4.6/d (conventional therapy). Adjusted for age, gender, diabetes duration, year of treatment, insulin regimen, insulin dose, BMI-SDS, and center difference, SMBG frequency was significantly associated with better metabolic control with a drop of HbA1c of 0.20% for one additional SMBG per day (p < 0.001). Increasing the SMBG frequency above 5/d did not result in further improvement of metabolic control. A higher frequency of SMBG measurements was related to better metabolic control. But only among adolescents aged > 12 yr, metabolic control (HbA1c) improved distinctively with two or more blood glucose measurements.
To review key advances in the behavioral science literature related to psychosocial issues and therapies for persons with diabetes, to discuss barriers to research progress, and to make recommendations for future research.
Key findings from the literature on psychosocial research in diabetes are reviewed separately for children and adults. Specific issues covered include psychosocial adjustment and psychiatric disorders, neurocognitive functioning, quality of life, and psychosocial therapies. Barriers that must be addressed to allow research in this area to progress are discussed. Recommendations are then made concerning high-priority areas for advancing research in the field.
A substantial amount of behavioral science research has demonstrated that psychosocial factors play an integral role in the management of diabetes in both children and adults. Research has also shown the efficacy of a number of psychosocial therapies that can improve regimen adherence, glycemic control, psychosocial functioning, and quality of life. More research in this area is needed to develop psychosocial intervention programs for specific patient populations and to demonstrate the cost-effectiveness of these approaches.
The aim of the study was to estimate the direct family costs of Type 1 diabetes in India. The study was carried out with the participation of the families of 209 Type 1 DM patients (M:F 126:83, mean age 26.6+/-12.7 years). The annual family income varied from Rs. 10,000 to 600,000/- (US 1276). A median figure of Rs. 13,980 (US 45-1936). Fifty six percent of patients were not earning. The median percentage of income spent on diabetes was 22% for the entire group, varying from 59% in the low socioeconomic group, 32% in the middle socioeconomic group, 18% in the upper middle income group and 12% in the high-income group. Patients managed on an outpatient basis alone incurred an expenditure of 16% of income while 23% of income was spent on those requiring hospitalisation.
Unhealthy school meals: a solution to hunger or a problem for health? The Lancet Regional Health
- Tlrh Americas
NCPCR writes to states to introduce concessions for children with type 1 diabetes in schools. The Hindu
- R Kannan
Type 1 Diabetes Index
- India