This chapter presents an overview of access to specialist care for arthritis and related conditions in Western countries with an emphasis on emerging directions in care delivery to respond to increasing demands and limitations in resources, focussing mainly on rheumatologists and orthopaedic surgeons. The need for care will be driven by the ageing of the population, and in many countries there is a concern about a current and/or future shortage of the rheumatology and orthopaedic surgeon workforce to meet these needs. A number of different models of care have been developed to expedite timely access to specialists for early inflammatory arthritis therapy and total joint replacement. A major gap in care is access to specialist input to support the primary care management of osteoarthritis. For all conditions, the feasibility of interventions to enhance access will depend on the constraints of arthritis-care delivery systems, including funding mechanisms of the health-care system.
For most conditions, and arthritis is no exception, access to care at the population level is a balance between need, demand and the availability of resources tempered by the organisation of the local health-care system. As the prevalence of most kinds of arthritis increases with age, the simplest indicator of need is the age of the population . The ageing of the baby boomer generation will be one of the most important influences on the health of the population and the need for health care in the coming decades. Concern about the impact of ageing baby boomers is twofold, relating to the unprecedented large size of this generation as well as to the notion that baby boomers are different from the preceding generation. As the prevalence of arthritis increases with age, projections suggest that the ageing of the population alone will increase the number of people with arthritis by 50% over the next two decades , a high proportion of whom will be of working age (i.e., younger than 65 years). The boomers grew up at a time of social change, particularly in the role of women, and of economic growth and prosperity with improved access to education and employment opportunities, and to health and welfare services. Higher prosperity has been associated with increasing obesity and decreasing levels of physical activity in the population, which might be expected to increase the population prevalence and impact of arthritis yet further . A further likely influence is that the successes of the health-care system and improvements in medical care have given the baby boomers higher expectations about the effectiveness of medical treatment, and different attitudes that are likely to translate into higher expectations as consumers receiving health-care services . Further, the ageing of the population not only affects the number of people with arthritis, but also has implications for the ageing of the workforce, including the number of health professionals available to treat arthritis and respond to the increased expectations of the baby boomer population .
Access to care is also affected by economic considerations. There are concerns with containment of health-care costs, which are driven in part by new technologies, such as increased use of magnetic resonance imaging and computed tomography, and by new drugs. For rheumatology the major development has been biologic agents, such as tumour necrosis factor (TNF) inhibitors, which offer the possibility of effective treatment for a majority people with rheumatoid arthritis (RA) and other types of inflammatory arthritis, albeit at a considerable cost . There is also increasing demand for joint replacement surgery, with increasing incidence in most Western countries . The global economic crisis has hit at a time when the oldest members of the baby boomer generation are reaching retirement age, further fuelling increasing concern about the adequacy of the resources of the health-care system to meet the needs of people with arthritis and other chronic diseases. Together, these pressures add up to a potential crisis in delivery of care for arthritis and related conditions.
This chapter will present an overview for access to specialist care of arthritis and related conditions in Western countries, with an emphasis on emerging directions in care delivery to respond to increasing demands and limitations in resources. We will focus mainly on rheumatologists and orthopaedic surgeons. To simplify somewhat, specialists fill two major roles within the health-care system. The first is the direct delivery of health care with the provision and monitoring of specific therapies. Examples would be the treatment of inflammatory arthritis with disease-modifying drugs (disease modifying antirheumatic drugs, DMARDs) by rheumatologists, and the provision of corrective and restorative surgery by orthopaedic surgeons, particularly joint replacement surgery. The second is a more consultative role. Indeed, a reflection of this is the use of the term ‘consultant’ in the UK to denote a specialist. Specialist input may be required to make a diagnosis, particularly for the rarer kinds of arthritis or unusual presentations, and to provide assessment, advice and counselling . Out of the scope of this chapter are issues in access to care once the specialist has been seen, for example, the well-documented national and international differences in the care provided by rheumatologists , particularly use and access to biologic drugs , as well as the variations in rates of total joint replacement surgery .
Issues of access to specialist care need to be set in the context of the organisation of the health-care system. In some countries including the United Kingdom (UK), Canada, New Zealand, Australia and Spain, and for some managed care organisations in the United States (US), access to specialists is generally via referral from another physician, most frequently primary care physicians. In contrast in other systems, for example in Germany and the US, patients can access specialists directly, although access through self-referral may be decreasing in the US with the increase in managed care plans. The nature of payment systems can further influence what services may be available, irrespective of whether the payment is made by the patient or private or national health insurance, or a blended system. In countries such as Canada and the US where most physicians are paid via fee for service, the expectation is that these fees also support office costs including employment of supporting health professional and other staff. In other countries with central national health funding, such as the UK, the organisation of health care is at the facility level with a range of salaried health professionals, including specialists, nurses and rehabilitation therapists. In these countries, this offers the possibility for rheumatology nurses and physiotherapists to be fully integrated into the health-care system. In the US and Canada physical therapists tend to work separately, often in non-hospital settings and are frequently reimbursed with fees paid by the patient. As discussed later, these arrangements can profoundly affect the possibilities of care delivery in response to restrictions in availability of specialist care.
Availability of specialists for the management of arthritis
In many countries, there is a concern about a current and/or future shortage of arthritis-related specialists, particularly rheumatologists and orthopaedic surgeons, to meet the demands of the ageing population. At a population level, needs for specialist care are difficult to gauge as this depends on the range of conditions normally treated, and this varies between countries. For example, there are differences in the degree to which rheumatologists manage soft tissue and localised joint complaints. The types of condition seen by rheumatologists may also depend on the location of the practice, and may be somewhat different in teaching hospitals and general community hospitals.
It is therefore difficult to know how many rheumatologists are required to provide care for the population. The UK has a benchmark set by the Royal College of Physicians of optimal provision of one full time equivalent (FTE) rheumatologist per 86 000 population, equivalent to 1.2 rheumatologists per 100 000 population . This estimate is based on the assumption that rheumatologists provide a service for both inflammatory and non-inflammatory musculoskeletal conditions and are supported by specialist rheumatologist nurses. In the UK the number of FTE rheumatologists has steadily increased over the years, and is approaching recommended levels with a reduction in regional variation . The overall provision in Ontario, Canada, is similar to the UK benchmark, but there are wide regional variations in provision, with some areas having very low or minimal provision . There is similarly concern in the rest of Canada about a shortage of rheumatologists, both now and in the future . Even though the overall provision is similar to the UK benchmark, Canadian rheumatologists work in a fee-for-service situation generally without the support of specialist rheumatology nurses. In the US, the overall provision of rheumatologists is around 2 per 100 000 population, with projections of shortages due to low recruitment, retirements and increased need . While the higher provision in the US than the UK benchmark may be partially related to direct access and a greater role as the provider of primary rheumatologic care, comparison of referral rates in the UK and in managed care systems in the US shows higher referral rates in the US possibly related to higher rates of self-referral . There is relatively little recent information on the provision of rheumatology services elsewhere. An estimate for New Zealand is half the recommended amount for the UK, with large regional variations . The situation in less developed countries is even more critical . Looking to the future, there are also widespread concerns about the recruitment and retention of trainees into rheumatology, and that this not will be sufficient to meet current and future needs .
There is also concern about the availability of orthopaedic surgeons, given the increasing rates of joint replacement surgery over time and anticipated increase in demand for orthopaedic surgery due to an ageing population . It is difficult to estimate how many orthopaedic surgeons are needed to meet population needs. A demand-based requirement for the US recommended between 5 and 7 FTEs per 100 000 population , which is similar to the suggested optimal provision for the UK of 4–6.7 FTE per 100 000 . However, the provision of approximately 3 surgeons per 100 000 for the UK and for Canada falls well below this . There is also wide variation in surgeon supply between European countries . For many countries there are also wide regional variations in surgeon availability . Further, a substantial proportion of surgeons is close to retirement age, which raises questions about the future supply, particularly as surgeons over the age of 50 years work the longest hours in a week, and work time declines with age . There is concern that new surgeons entering the workforce work are working shorter hours, which may also contribute to pressure on future supply , together with an increasing number of orthopaedic surgeons working below a FTE level due to resource restrictions such as operating room time , or leaving to work elsewhere . In addition to geographic variations in surgeon supply, there are also large regional variations in amount of surgery performed . Total joint replacement surgery has been most studied and an association between higher surgeon volumes and better outcomes has led to suggestions for implementation of policies for regionalisation of health-care delivery . Furthermore, while studies of orthopaedic manpower are naturally focussed on capacity for surgery, little consideration has been given to the role of the orthopaedic surgeon in the conservative management of arthritis, which accounts both for a substantial proportion of their time and the number of patients seen .
Summary point
Given the expected increase in the number of people with arthritis, in most countries there is concern that the current and/or future supply of rheumatologists and orthopaedic surgeons will be inadequate to meet the need for care.
Need for specialist care
The need for specialist care for arthritis can be considered within two major bins. The first is care for those conditions where specialist care is an essential part of management. Examples would be rheumatology care for inflammatory arthritis and auto-immune conditions such as connective tissue diseases, and surgical care for end-stage osteoarthritis (OA), particularly total joint replacement surgery. The second is to support care, which is mainly provided in primary health care where input from a rheumatologist or orthopaedic surgeon may be required to make a differential diagnosis, particularly for the rarer kinds of arthritis or unusual presentations, to provide advice on management, to provide specific therapies such as intra-articular injections or to provide a surgical opinion.
Rheumatologists are central to the treatment and management of inflammatory arthritis and other auto-immune conditions. The major development over the last two decades is the realisation of the importance of treatment of early disease with DMARDs and biologic agents. There is a critical window of opportunity where aggressive intervention has been shown to improve clinical outcomes, functional status and quality of life , as well as decrease job loss and reduce sick leave . Delays in initiating therapy have conversely been associated with long-term harm . As disease-modifying therapy is rarely initiated by primary care physicians , this has focussed attention on the importance of timely access to rheumatologists. Population-based studies show that patients managed primarily by primary care physicians are less likely to have been prescribed DMARDs .
Inflammatory arthritis represents only a small proportion of the total prevalence of arthritis. Combining prevalence estimates for RA with those for other forms of inflammatory arthritis, such as psoriatic arthritis and spondyloarthropathies, and connective tissues diseases gives an overall guestimate of a prevalence of 2% or less for conditions needing rheumatologic care . In contrast, it is estimated that over 10% of the population has symptomatic OA . Although generally considered a less serious condition than inflammatory arthritis, a proportion of the population has severe pain and disability. Although much of the literature on OA focusses separately on arthritis of the hip, knee or hand, clearly for many people it is a polyarticular disease. A Canadian population health survey of individuals with self-reported arthritis showed a similar mean number of joint sites out of 18 reported by individuals with self-reported OA and RA of 4.6 (95% confidence interval (CI) 4.3–4.8) and 5.1 (95% CI 3.9–6.4), respectively (Badley unpublished results). In addition, a substantial proportion of the population has soft-tissue rheumatism, synovitis or other soft-tissue disorders . Although all these conditions are mainly managed in primary care, there is a perceived need for at least some consultant input into their management. Population-based data from Ontario, Canada and from the US suggest that up to one-third of people consulting for arthritis, including OA see specialists . Orthopaedic surgeons are the most frequent type of specialist seen, although some referrals are to rheumatology. We could find no equivalent data for Europe, however, as the UK benchmark for rheumatology provision assumes care for both inflammatory and non-inflammatory arthritis . Only a minority, of the order of 25–30%, of patients seeing orthopaedic surgeons subsequently have surgery . It is likely therefore that a relatively high proportion of patients seeing orthopaedic surgeons are referrals for specialist input into the conservative management of long-term chronic pain and disability rather than for an opinion about surgery . Nevertheless, the role of orthopaedic surgeons in the medical care of musculoskeletal conditions and the training of surgeons for the provision of non-surgical care are not widely recognised .
Summary point
While specialist care is essential for some conditions such as rheumatology care for inflammatory arthritis and orthopaedic surgery for total joint replacement and other procedures, these only represent the minority of patients seen. Specialist input may also be required for expert diagnosis and advice on treatment and management of other conditions.
Need for specialist care
The need for specialist care for arthritis can be considered within two major bins. The first is care for those conditions where specialist care is an essential part of management. Examples would be rheumatology care for inflammatory arthritis and auto-immune conditions such as connective tissue diseases, and surgical care for end-stage osteoarthritis (OA), particularly total joint replacement surgery. The second is to support care, which is mainly provided in primary health care where input from a rheumatologist or orthopaedic surgeon may be required to make a differential diagnosis, particularly for the rarer kinds of arthritis or unusual presentations, to provide advice on management, to provide specific therapies such as intra-articular injections or to provide a surgical opinion.
Rheumatologists are central to the treatment and management of inflammatory arthritis and other auto-immune conditions. The major development over the last two decades is the realisation of the importance of treatment of early disease with DMARDs and biologic agents. There is a critical window of opportunity where aggressive intervention has been shown to improve clinical outcomes, functional status and quality of life , as well as decrease job loss and reduce sick leave . Delays in initiating therapy have conversely been associated with long-term harm . As disease-modifying therapy is rarely initiated by primary care physicians , this has focussed attention on the importance of timely access to rheumatologists. Population-based studies show that patients managed primarily by primary care physicians are less likely to have been prescribed DMARDs .
Inflammatory arthritis represents only a small proportion of the total prevalence of arthritis. Combining prevalence estimates for RA with those for other forms of inflammatory arthritis, such as psoriatic arthritis and spondyloarthropathies, and connective tissues diseases gives an overall guestimate of a prevalence of 2% or less for conditions needing rheumatologic care . In contrast, it is estimated that over 10% of the population has symptomatic OA . Although generally considered a less serious condition than inflammatory arthritis, a proportion of the population has severe pain and disability. Although much of the literature on OA focusses separately on arthritis of the hip, knee or hand, clearly for many people it is a polyarticular disease. A Canadian population health survey of individuals with self-reported arthritis showed a similar mean number of joint sites out of 18 reported by individuals with self-reported OA and RA of 4.6 (95% confidence interval (CI) 4.3–4.8) and 5.1 (95% CI 3.9–6.4), respectively (Badley unpublished results). In addition, a substantial proportion of the population has soft-tissue rheumatism, synovitis or other soft-tissue disorders . Although all these conditions are mainly managed in primary care, there is a perceived need for at least some consultant input into their management. Population-based data from Ontario, Canada and from the US suggest that up to one-third of people consulting for arthritis, including OA see specialists . Orthopaedic surgeons are the most frequent type of specialist seen, although some referrals are to rheumatology. We could find no equivalent data for Europe, however, as the UK benchmark for rheumatology provision assumes care for both inflammatory and non-inflammatory arthritis . Only a minority, of the order of 25–30%, of patients seeing orthopaedic surgeons subsequently have surgery . It is likely therefore that a relatively high proportion of patients seeing orthopaedic surgeons are referrals for specialist input into the conservative management of long-term chronic pain and disability rather than for an opinion about surgery . Nevertheless, the role of orthopaedic surgeons in the medical care of musculoskeletal conditions and the training of surgeons for the provision of non-surgical care are not widely recognised .
Summary point
While specialist care is essential for some conditions such as rheumatology care for inflammatory arthritis and orthopaedic surgery for total joint replacement and other procedures, these only represent the minority of patients seen. Specialist input may also be required for expert diagnosis and advice on treatment and management of other conditions.
Access where specialist care is an essential part of management
Although not well documented, there is an underlying assumption that suboptimal provision of specialist care is associated with problems in access to services. There is some evidence that perceptions of low availability of rheumatologists may deter referral by primary care physicians , and distance to a specialist is inversely linked to the probability of care for arthritis .
Strategies to promote early referral and reduce delays in diagnosis and management of inflammatory arthritis were the topic of a recent systematic review by Villeneuve et al. . Three major areas were identified where there were likely delays. The first is the time between symptom onset and assessment in primary care. A variety of interventions are being developed to address this, such as community case-finding strategies including self-screening tests, public awareness programmes and provision of information via the Internet, with some limited evidence for the efficacy of community case finding through a ‘health fair’. The second is the time between first visit to a primary care provider and rheumatology referral. This has been found to be one of the major contributors to delay in treatment initiation . Key issues here are the recognition of likely inflammatory arthritis and the decision to refer. A major emphasis on remedying this has been on primary physician and health professions’ education programmes, with some evidence that these strategies can increase referrals . Other strategies with less evidence for efficacy are the development of questionnaires to detect early inflammatory arthritis and screening examinations .
The third area of delay is time between referral and when the patient is seen, essentially the wait time to see the rheumatologist. This has also been identified as a further important contributor to delay in access to therapy . The major strategies here are triage of referrals to identify patients who may benefit from early intervention, the development of early arthritis clinics and other types of rapid access services. There is some evidence that all of these are effective strategies . However, not all triage systems operate the same way. There are central triage clinics that provide a common pathway for all musculoskeletal referrals with patients being triaged to the appropriate health professional and/or treatment . Such clinics have been incorporated in health-care policy in the UK to shift the management of musculoskeletal conditions from secondary care towards Clinical Assessment and Treatment Services (CATS) at the primary–secondary care interface. In 2007, up to one-fifth of rheumatology consultants worked in conjunction with such services . A further aspect is triage to specifically identify cases of early inflammatory arthritis for expedited treatment, or in the case orthopaedics, patients likely to need joint replacement surgery . This tends to be more the function of triage in North American settings. A major challenge for triage is the development of criteria . Early arthritis clinic and rapid access services are also being developed to decrease wait times for rheumatology . Some of these operate in a similar way to triage clinics, with patients effectively being screened as to whether an early rheumatology appointment is needed. A further model is where the rheumatologist sets aside specific clinics sessions to see likely inflammatory patients. A characteristic of many triage models as well as early access clinics is that they involve the use of other health-care professionals, such as physiotherapists or nurses, often working in expanded roles .
A further special case is arrangements for patients who live in remote or rural areas where there is no local specialist. Technology is increasingly providing a solution here through the development of information technology and telemedicine . An alternative strategy is where the specialist travels to the remote location on a regular but occasional basis .
Summary point
A variety of strategies are being developed to expedite access to care for those conditions for which specialist input is an essential part of management. These include case finding and screening strategies, education for primary care providers about timely referral and triage clinics, often involving use of other health professionals.
Access to specialist care for diagnosis and advice on management and therapies
In the literature, most attention is paid to timely access to specialists for treatment of inflammatory arthritis and access to total joint replacement surgery. Nevertheless, the majority of people with arthritis have OA. In addition to increased demand due to the ageing of the population, given the current lack of an effective medical treatment of OA, it is likely that demand for specialist care will increase further fuelled by the higher expectations of the baby boomer generation and by the obesity epidemic. This is a major gap in the delivery of effective care. The expectation is that OA as well as other related conditions such as soft-tissue disorders will be managed in primary care. While it is indeed the case that primary care physicians are the most frequently consulted type of physician, as indicated above, an estimated one-third of such patients see specialists. Studies show that general physicians (GPs) lack training in the management of arthritis and musculoskeletal disorders . It is therefore perhaps not surprising that they may perceive a need for advice and support from a specialist. Some of the referrals may also be patient driven as patients struggle to live with a long-term, chronic, painful and disabling condition. A review by the King’s Fund on quality of GP diagnosis and referral in the UK found a limited literature that showed that 23% of referrals to orthopaedics were unnecessary , 27% were more appropriate for rheumatology and around 50% of referrals could have been treated in community settings .
Although also important for the management of inflammatory arthritis , a major resource for the specialist management of OA and soft-tissue disorders is access to physiotherapists, as well as other health professionals such as occupational therapists, nurses, nutritionists, psychologists or pharmacists to provide support for exercise and self-management strategies and to provide specific types of treatment. There are few, if any, studies about the provision of physical therapy and self-management resources in the community, or what the adequate provision of such services would be. A barrier in some countries, such as Canada and the US, is that access to physical therapy most frequently requires patients to pay themselves or through health insurance, if available . Overall referral to physiotherapists and self-management programmes for OA is far from optimum . Studies show that both patients and health professionals perceive problems with OA care, and a suggestion from a qualitative study of patients and health professionals for possible service improvements was that an ‘OA specialist’ in primary care is needed . As an example, a Canadian randomised controlled trial has shown that a specialist rehabilitation input in primary care can be effective in reducing hospitalisations for chronic conditions . Given the shortages and competing demands for the skills of rheumatologists and orthopaedic surgeons, innovative strategies to provide ‘specialist’ input are needed. These could include use of primary care physicians with a special interest or physiotherapists or nurses working in expanded roles, with appropriate training and changes to scope of practice to allow access to diagnostic tools such as imaging and prescribing of appropriate mediation.
Summary point
The provision of specialist advice in the diagnosis and management of arthritis and soft-tissue disorders at the primary care level is a major gap in the delivery of care, especially for OA and soft-tissue disorders. A possible response is the use of other health professionals with special skills and training.
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