Integrated Diabetes Care (I)

I’ll start out by quoting from my goodreads review of the book:

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The book provides a good overview of studies and clinical trials which have attempted to improve the coordination of diabetes treatment in specific areas. The book covers research from all over the world – the UK, the US, Hong Kong, South Africa, Germany, Netherlands, Sweden, Australia. The language of the publication is quite good, considering the number of non-native English speaking contributors. An at least basic understanding of medical statistics is probably required for one to properly read and understand this book in full.

The book is quite good if you want to understand how people have tried to improve (mainly type 2) diabetes treatment ‘from an organizational point of view’ (the main focus here is not on new treatment options, but on how to optimize care delivery and make the various care providers involved work better together, in a way that improves outcomes for patients (at an acceptable cost?), which is to a large extent an organizational problem), but it’s actually also probably quite a nice book if you simply want to know more about how diabetes treatment systems differ across countries; the contributors don’t assume that the readers know how e.g. the Swedish approach to diabetes care differs from that of e.g. Pennsylvania, so many chapters contain interesting details on how specific countries/health care providers handle specific aspects of e.g. care delivery or finance.

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What people mean by ‘integrated care’ varies a bit depending on whom you ask (patients and service providers may emphasize different dimensions when thinking about these topics), as should also be clear from the quotes below; however I assumed it might be a good idea to start out the post with the quote above, so that people who might have no idea what ‘integrated diabetes care’ is did not start out reading the post completely in the dark. In short, a big problem in health service delivery contexts is that care provision is often fragmented and uncoordinated, for many reasons. Ideally you might like doctors working in general practice to collaborate smoothly and efficiently with hospital staff and various other specialists involved in diabetes care (…and perhaps also with social services and mental health care providers…), but that kind of coordination often doesn’t happen, leading to what may well be sub-optimal care provision. Collaboration and a ‘desirable’ (whatever that might mean) level of coordination between service providers doesn’t happen automatically; it takes money, effort and a lot of other things (that the book covers in some detail…) to make it happen – and so often it doesn’t happen, at least there’s a lot of room for improvement even in places where things work comparatively well. Some quotes from the book on these topics:

“it is clear that in general, wherever you are in the world, service delivery is now fragmented [2]. Such fragmentation is a manifestation of organisational and financial barriers, which divide providers at the boundaries of primary and secondary care, physical and mental health care, and between health and social care. Diverse specific organisational and professional cultures, and differences in terms of governance and accountability also contribute to this fragmentation [2]. […] Many of these deficiencies are caused by organisational problems (barriers, silo thinking, accountability for budgets) and are often to the detriment of all of those involved: patients, providers and funders – in extreme cases – leading to lose-lose-lose-situations […] There is some evidence that integrated care does improve the quality of patient care and leads to improved health or patient satisfaction [10, 11], but evidence of economic benefits remain an issue for further research [10]. Failure to improve integration and coordination of services along a “care continuum” can result in suboptimal outcomes (health and cost), such as potentially preventable hospitalisation, avoidable death, medication errors and adverse drug events [3, 12, 13].”

“Integrated care is often described as a continuum [10, 24], actually depicting the degree of integration. This degree can range from linkage, to coordination and integration [10], or segregation (absence of any cooperation) to full integration [25], in which the integrated organisation is responsible for the full continuum of care responsible for the full continuum of care […] this classification of integration degree can be expanded by introducing a second dimension, i.e., the user needs. User need should be defined by criteria, like stability and severity of condition, duration of illness (chronic condition), service needed and capacity for self-direction (autonomy). Accordingly, a low level of need will not require a fully integrated system, then [10, 24] […] Kaiser Permanente is a good example of what has been described as a “fully integrated system. […] A key element of Kaiser Permanente’s approach to chronic care is the categorisation of their chronically ill patients into three groups based on their degree of need“.

It may be a useful simplification to think along the lines of: ‘Higher degree of need = a higher level of integration becomes desirable/necessary. Disease complexity is closely related to degree of need.’ Some related observations from the book:

“Diabetes is a condition in which longstanding hyperglycaemia damages arteries (causing macrovascular, e.g., ischaemic heart, peripheral and cerebrovascular disease, and microvascular disease, e.g., retinopathy, nephropathy), peripheral nerves (causing neuropathy), and other structures such as skin (causing cheiroarthropathy) and the lens (causing cataracts). Different degrees of macrovascular, neuropathic and cutaneous complications lead to the “diabetic foot.” A proportion of patients, particularly with type 2 diabetes have metabolic syndrome including central adiposity, dyslipidaemia, hypertension and non alcoholic fatty liver disease. Glucose management can have severe side effects, particularly hypoglycaemia and weight gain. Under-treatment is not only associated with long term complications but infections, vascular events and increased hospitalisation. Absence of treatment in type 1 diabetes can rapidly lead to diabetic keto-acidosis and death. Diabetes doubles the risk for depression, and on the other hand, depression may increase the risk for hyperglycaemia and finally for complications of diabetes [41]. Essentially, diabetes affects every part of the body once complications set in, and the crux of diabetes management is to normalise (as much as possible) the blood glucose and manage any associated risk factors, thereby preventing complications and maintaining the highest quality of life. […] glucose management requires minute by minute, day by day management addressing the complexity of diabetes, including clinical and behavioural issues. While other conditions also have the patient as therapist, diabetes requires a fully empowered patient with all of the skills, knowledge and motivation every hour of the waking day. A patient that is fully engaged in self-management, and has support systems, is empowered to manage their diabetes and will likely experience better outcomes compared with those who do not have access to this support. […] in diabetes, the boundaries between primary care and secondary care are blurred. Diabetes specialist services, although secondary care, can provide primary care, and there are GPs, diabetes educators, and other ancillary providers who can provide a level of specialist care.”

In short, diabetes is a complex disease – it’s one of those diseases where a significant degree of care integration is likely to be necessary in order to achieve even close to optimal outcomes. A little more on these topics:

“The unique challenge to providers is to satisfy two specific demands in diabetes care. The first is to anticipate and recognize the onset of complications through comprehensive diabetes care, which demands meticulous attention to a large number of process-of-care measures at each visit. The second, arguably greater challenge for providers is to forestall the development of complications through effective diabetes care, which demands mastery over many different skills in a variety of distinct fields in order to achieve performance goals covering multiple facets of management. Individually and collectively, these dual challenges constitute a virtually unsustainable burden for providers. That is because (a) completing all the mandated process measures for comprehensive care requires far more time than is traditionally available in a single patient visit; and (b) most providers do not themselves possess skills in all the ancillary disciplines essential for effective care […] Diabetes presents patients with similarly unique dual challenges in mastering diabetes self-management with self-awareness, self-empowerment and self-confidence. Comprehensive Diabetes Self-Management demands the acquisition of a variety of skills in order to fulfil a multitude of tasks in many different areas of daily life. Effective Diabetes Self-Management, on the other hand, demands constant vigilance, consistent discipline and persistent attention over a lifetime, without respite, to nutritional self-discipline, monitoring blood glucose levels, and adherence to anti-diabetic medication use. Together, they constitute a burden that most patients find difficult to sustain even with expert assistance, and all-but-impossible without it.”

“Care coordination achieves critical importance for diabetes, in particular, because of the need for management at many different levels and locations. At the most basic level, the symptomatic management of acute hypo- and hyperglycaemia often devolves to the PCP [primary care provider], even when a specialist oversees more advanced strategies for glycaemic management. At another level, the wide variety of chronic complications requires input from many different specialists, whereas hospitalizations for acute emergencies often fall to hospitalists and critical care specialists. Thus, diabetes care is fraught with the potential for sometimes conflicting, even contradictory management strategies, making care coordination mandatory for success.”

“Many of the problems surrounding the provision of adequate person-centred care for those with diabetes revolve around the pressures of clinical practice and a lack of time. Good diabetes management requires attention to a number of clinical parameters
1. (Near) Normalization of blood glucose
2. Control of co-morbidities and risk factors
3. Attainment of normal growth and development
4. Prevention of Acute Complications
5. Screening for Chronic Complications
To fit all this and a holistic, patient-centred collaborative approach into a busy general practice, the servicing doctor and other team members must understand that diabetes cannot be “dealt with” coincidently during a patient consultation for an acute condition.”

“Implementation of the team model requires sharing of tasks and responsibilities that have traditionally been the purview of the physician. The term “team care” has traditionally been used to indicate a group of health-care professionals such as physicians, nurses, pharmacists, or social workers, who work together in caring for a group of patients. In a 2006 systematic review of 66 trials testing 11 strategies for improving glycaemic control for patients with diabetes, only team care and case management showed a significant impact on reducing HbA1c levels [18].”

Moving on, I found the chapter about Hong Kong interesting, for several reasons. The quality of Scandinavian health registries are probably widely known in the epidemiological community, but I was not aware of Hong Kong’s quality of diabetes data, and data management strategies, which seems to be high. Nor was I aware of some of the things they’ve discovered while analyzing those data. A few quotes from that part of the coverage:

“Given the volume of patients in the clinics, the team’s earliest work from the HKDR [Hong Kong Diabetes Registry, US] prioritized the development of prediction models, to allow for more efficient, data-driven risk stratification of patients. After accruing data for a decade on over 7000 patients, the team established 5-year probabilities for major diabetes-related complications as defined by the International Code for Diseases retrieved from the CMS [Clinical Management System, US]. These included end stage renal disease [7], stroke [8], coronary heart disease [9], heart failure [10], and mortality [11]. These risk equations have a 70–90 % sensitivity and specificity of predicting outcomes based on the parameters collected in the registry.”

“The lifelong commitments to medication adherence and lifestyle modification make diabetes self-management both physically and emotionally taxing. The psychological burdens result from insulin injection, self-monitoring of blood glucose, dietary restriction, as well as fear of complications, which may significantly increase negative emotions in patients with diabetes. Depression, anxiety, and distress are prevalent mental afflictions found in patients with diabetes […] the prevalence of depression was 18.3 % in Hong Kong Chinese patients with type 2 diabetes. Furthermore, depression was associated with poor glycaemic control and self-reported hypoglycaemia, in part due to poor adherence […] a prospective study involving 7835 patients with type 2 diabetes without cardiovascular disease (CVD) at baseline […] found that [a]fter adjusting for conventional risk factors, depression was independently associated with a two to threefold increase in the risk of incident CVD [22].”

“Diabetes has been associated with increased cancer risk, but the underlying mechanism is poorly understood. The linkage between the longitudinal clinical data within the HKDR and the cancer outcome data in the CMS has provided important observational findings to help elucidate these connections. Detailed pharmacoepidemiological analyses revealed attenuated cancer risk in patients treated with insulin and oral anti-diabetic drugs compared with non-users of these drugs”

“Among the many challenges of patient self-management, lack of education and empowerment are the two most cited barriers [59]. Sufficient knowledge is unquestionably important in self-care, especially in people with low health literacy and limited access to diabetes education. Several systematic reviews [have] showed that self-management education with comprehensive lifestyle interventions improved glycaemic and cardiovascular risk factor control [60–62].”

“Clinical trials are expensive because of the detail and depth of data required on each patient, which often require separate databases to be developed outside of the usual-care electronic medical records or paper-based chart systems. These databases must be built, managed, and maintained from scratch every time, often requiring double-entry of data by research staff. The JADE [Joint Asia Diabetes Evaluation] programme provides a more efficient means of collecting the key clinical variables in its comprehensive assessments, and allows researchers to add new fields as necessary for research purposes. This obviates the need for redundant entry into non-clinical systems, as the JADE programme is simultaneously a clinical care tool and prospective database. […] A large number of trials fail because of inadequate recruitment [67]. The JADE programme has allowed for ready identification of eligible clinical trial participants because of its detailed clinical database. […] One of the greatest challenges in clinical trials is maintaining the contact between researchers and patients over many years. […] JADE facilitates long-term contact with the patient, as part of routine periodic follow-up. This also allows researchers to evaluate longer term outcomes than many previous trials, given the great expense in maintaining databases for the tracking of longitudinal outcomes.”

Lastly, some stuff on cost and related matters from the book:

“Diabetes imposes a massive economic burden on all healthcare systems, accounting for 11 % of total global healthcare expenditure on adults in 2013.”

“Often, designated service providers institute managed care programmes to standardize and control care rendered in a safe and cost-effective manner. However, many of these programmes concentrate on cost-savings rather than patient service utilization and improved clinical outcomes. [this part of the coverage is from South Africa, but these kinds of approaches are definitely not limited to SA – US] […] While these approaches may save some costs in the short-term, Managed Care Programmes which do not address patient outcomes nor reduce long term complications, ignore the fact that that the majority of the costs for treating diabetes, even in the medium term, are due to the treatment of acute and chronic complications and for inpatient hospital care [14]. Additionally, it is well established that poor long-term clinical outcomes increase the cost burden of managing the patient with diabetes by up to 250 %. […] overall, the costs of medication, including insulin, accounts for just 7 % of all healthcare costs related to diabetes [this number varies across countries, I’ve seen estimates of 15% in the past – and as does the out-pocket share of that cost – but the costs of medications constitute a relatively small proportion of the total costs of diabetes everywhere you look, regardless of health care system and prevalence. If you include indirect costs as well, which you should, this becomes even more obvious – US]”

“[A] study of the Economic Costs of Diabetes in the U.S. in 2012 [25] showed that for people with diabetes, hospital inpatient care accounted for 43 % of the total medical cost of diabetes.”

“There is some evidence of a positive impact of integrated care programmes on the quality of patient care [10, 34]. There is also a cautious appraisal that warns that “Even in well-performing care groups, it is likely to take years before cost savings become visible” […]. Based on a literature review from 1996 to 2004 Ouwens et al. [11] found out that integrated care programmes seemed to have positive effects on the quality of care. […] because of the variation in definitions of integrated care programmes and the components used cover a broad spectrum, the results should be interpreted with caution. […] In their systematic review of the effectiveness of integrated care Ouwens et al. [11] could report on only seven (about 54 %) reviews which had included an economic analysis. Four of them showed financial advantages. In their study Powell Davies et al. [34] found that less than 20 % of studies that measured economic outcomes found a significant positive result. Similarly, de Bruin et al. [37] evaluated the impact of disease management programmes on health-care expenditures for patients with diabetes, depression, heart failure or chronic obstructive pulmonary disease (COPD). Thirteen studies of 21 showed cost savings, but the results were not statistically significant, or not actually tested for significance. […] well-designed economic evaluation studies of integrated care approaches are needed, in particular in order to support decision-making on the long-term financing of these programmes [30, 39]. Savings from integrated care are only a “hope” as long as there is no carefully designed economic analysis with a kind of full-cost accounting.”

“The cost-effectiveness of integrated care for patients with diabetes depends on the model of integrated care used, the system in which it is used, and the time-horizon chosen [123]. Models of cost benefit for using health coaching interventions for patients with poorly controlled diabetes have generally found a benefit in reducing HbA1c levels, but at the cost of paying for the added cost of health coaching which is not offset in the short term by savings from emergency department visits and hospitalizations […] An important question in assessing the cost of integrated care is whether it needs to be cost-saving or cost-neutral to be adopted, or is it enough to increase quality-adjusted life years (QALYs) at a “reasonable” cost (usually pegged at between $30,000 and $60,000 per QALY saved). Most integrated care programmes for patients with diabetes that have been evaluated for cost-effectiveness would meet this more liberal criterion […] In practice, integrated care programmes for patients with diabetes are often part of generalized programmes of care for patients with other chronic medical conditions, making the allocation of costs and savings with respect to integrated care for diabetes difficult to estimate. At this point, integrated care for patients with diabetes appears to be a widely accepted goal. The question becomes: which model of integrated care is most effective at reasonable cost? Answering this question depends both on what costs are included and what outcomes are measured; the answers may vary among different patient populations and different care systems.”