2.1 Increase in life expectancy of people with disabilities 2
2.2 Ageing of people with disabilities 3
2.3 Earlier onset of disease 4
2.4 Cultural shifts and changes in medical practice 4
2.5 Medical training and best-practice medicine 4
2.6 Coordination of health care 5
2.7 Awareness and accessibility of medical and technological
advances 5 2.8 Specific needs of women with disabilities 5 2.9 Indigenous people with disabilities 6 2.10 Impact of economic rationalism and decision making 6 3. MEDICAL AND TECHNOLOGICAL ADVANCES 6
3.1 Diagnostics and prognostics 7
3.2 Surgical interventions 8
3.3 Pharmacotherapy 9
3.4 General technology 10
4. ETHICS AND THE USE OF MEDICAL AND TECHNOLOGICAL ADVANCES 10
5. FUTURE ADVANCES 12
6. CONCLUSION 13
In recent times, the life expectancy of people with disabilities has increased in Australia; however, it is important to ensure that these added years of life are accompanied with improvements in health related quality of life. Medical and technological advances can also benefit people with disabilities and improve their survival and quality of life. To enable people with disabilities to fully utilise the benefits of the advances in medicine and technology, societal attitudes towards people with disabilities needs to change with more equitable medical treatment of people with disabilities. In addition, coordination of health care for people with disabilities is essential to provide appropriate and timely health services. Medical and technological advances in diagnostics and prognostics, surgical intervention, pharmacotherapy and general technology have played an important role in improving the health and quality of life for people with disabilities. Future medical and technological advances hold great promise and are expected to unfold in the next several decades. This report highlights several key issues for people with disabilities in relation to their health and wellbeing, major medical and technological advances that could benefit people with disabilities, ethical considerations in the use of these advances as well as future advances in medicine and technology.
In Australia, in recent decades there have been increases in life expectancy for people with disabilities, as well as, for the general population (AIHW, 2007). The expected life with disability has increased from 14.7 years in 1988 to 18.6 years in 2003 for males and from 16.0 years to 20.7 years for females (AIHW, 2006a).
Several studies have identified major risk factors that predict decreased life expectancy of people with disabilities including immobility (Eyman et al., 1990; Hutton & Pharoah, 2006; Plioplys, 2003), assisted feeding (Eyman et al., 1993; Plioplys, 2003), severity of intellectual disability (Bittles et al., 2002; Shavelle et al., 2001), and secondary diseases, disabilities or infections, including heart defects, blindness and epilepsy (Day et al., 2005; Hayes et al., 1997; Hutton, 2006; Patja et al., 2000). In addition, the presence of multiple risk factors increases the overall risk of mortality (Hutton, 2006). Therefore, it is likely that advances that decrease the severity or incidence of these predictors are likely to increase the survivability and life expectancy of people with disabilities.
Advances in medical technology which encompasses all aspects of medicine including devices, pharmaceuticals, surgery and the organisation of medical practice itself has improved the lives of people with disabilities. These advances have added years to life, however, it is important that these added years of life should be accompaniedwith improvements in health-related quality of life.The World HealthOrganization (1998) noted that ‘adding years to life’ is an empty victory without ‘addinglife to years’. Advances in technology have improved people’s independence and social participation. For example, better assistive technologies and advances in electronic and information technology have improved accessibility which has been liberating for many people with disabilities.
Purpose The purpose of this report is to explore the impact of medical and technological advances that have made a beneficial contribution to the life expectancy and quality of life of people with disabilities. This report focuses on disabilities with aetiology during early and mid lifespan and includes cerebral palsy, multiple sclerosis, epilepsy, Autism Spectrum Disorders, spina bifida and Down syndrome. Key issues and trends contributing to increased life expectancy are presented in this report. The major medical and technological areas covered in this report include advances in: diagnostics and prognostics; surgical interventions; pharmacotherapy; and general technology. In addition, ethical considerations in the use of technology and medical advances along with medical and technological developments that hold promise for the future are discussed.
2. KEY TRENDS AND ISSUES
In Western Australia, 68,409 people reported a need for core activity assistance (ABS, 2007). Of these, 31,664 (46%) were 64 years and under and 36,745 (54%) were 65 years and over. The life expectancy of Western Australians with disabilities has increased and with increases in life expectancy and an ageing population, the number and types of health services required will be affected placing high demands for health care.
2.1 Increase in life expectancy of people with disabilities
Studies on life expectancy for people with disabilities in Australia showed gains in life expectancy were accompanied by an increase in expected years of life with disability or a severe or profound limitation (AIHW, 2006b). The expected life with disability for males increased from 14.7 years in 1988 to 18.6 years in 2003 and from 16.0 years to 20.7 years for females. Furthermore, the expected years of life with severe or profound core activity limitation increased from 3.2 years to 5.4 years for males and from 6.0 years to 8.3 years for females as illustrated in Figures 1 and 2 below (AIHW, 2006b).
Fig 1: Life expectancy with disability Fig 2: Life expectancy with severe or profound limitation
The changing survival of children with Down syndrome over the past 50 years presents a good example of the increase in life expectancy for people with Down syndrome. Glasson et al. (2002) found that the life expectancy of 1,332 people with Down syndrome in Western Australia between 1953 and 2000 was 58.6 years and 25% lived to 62.9 years. In other words, the past 50 years the life expectancy of people with Down syndrome has increased by 0.94 life years per calendar year to a median life expectancy of 60 years compared with an increase of 0.22 life years per calendar year in the general population of Australia during the same period (Bittles & Glasson, 2004). The increase in survival indicates that the life expectancy of people with Down syndrome is approaching that of the general population (Glasson et al., 2002). Furthermore, it has been studied that survival rates for the first year of life have improved from below 60% in 1940-1950 birth cohorts, up to 80% in 1950-1970 birth cohorts, and over 90% in 1980 birth cohorts (Bell et al., 1989; Fabia & Drolette, 1970; McGrother & Marshall, 1990; Thase, 1982). Strauss et al. (2007) found that children with severe disabilities and in adults requiring gastrostomy feeding, mortality rates fell 3.4% per year for the 20 years between 1983 and 2002. This upward trend in life expectancy is noted for cerebral palsy, spina bifida, intellectual disability and neurological diseases (Hemming et al., 2006; Oakeshott & Hunt, 2003; Patja et al., 2000; Plioplys, 2003).
Technological and medical advances have resulted in increased survival of people with disabilities. However, in some cases, these advances have led to increased rates of disability. For example, advances in perinatal care have resulted in increased survival rates for extremely low birth weight infants. Associated with improved survival rates for immature infants could result in increased rates of disability and poor quality of life for the survivors (Wilson-Costello, 2007) which need to be addressed.
2.2 Ageing of people with disabilities
In Australia, the proportion of people ageing with a lifelong disability is rapidly increasing (Bigby, 2002; AIHW, 2006a). The number of people over the age of 60 years with lifelong developmental delays is expected to double by 2030 (cited in Barnhart & Connolly, 2007). The beginning of ageing for some people with disabilities is earlier than the general population. Studies in the US have shown that the beginning of ageing for people with developmental disability takes places when the individual is in the mid – to late 40 years or early to mid-50 years of age (Janicki & Wisniewski, 1995, cited in AIHW, 2000). Premature ageing has been consistently reported in people with Down syndrome and intellectual disability resulting from other chromosomal causes (Janicki & Wisniewski, 1995 and Suttie, 1995, cited in AIHW, 2000). Ageing people with Down syndrome are more likely to have hearing and vision impairments, hypothryroidism, musculoskeletal problems and congenital heart disease (AIHW, 2006a). Health care systems need to be capable of responding to the changing needs of this population as it ages. Gaps in policy and provision of service across sectors such as aged care and disability need to be filled and resourcing should be geared to facility ageing in place (Bigby, 2002).
2.3 Earlier onset of disease
There is evidence to show that there is earlier onset and higher incidence of disease for some people with disabilities. For example, studies have shown earlier onset and higher incidence of Alzheimer’s disease in people with Down syndrome (Bigby, 1998). Likewise, it was noted that some people with intellectual disability may acquire dementia much earlier in life at round 50 years. Glasson et al. (2002) noted that he increase in survival is accompanied by significant mid-life health problems. Between 38 – 78% of people with Down syndrome have hearing loss and the identification and treatment of hearing loss is a major part of medical management of people with Down syndrome (Roizen et al., 1993; Dahle & McCollister, 1988; Balkany et al., 1979).
2.4 Cultural shifts and changes in medical practice
Advances in medicine and technology over the decades can benefit people with disabilities. For example, increased access to surgical methods for repairing congenital heart defects in children with Down syndrome has occurred in recent decades, resulting in improved survival rates (Leonard et al., 2000). To enable people with disabilities to have access to advances in medicine and technology, a shift in social attitudes towards equitable medical treatment of people with disabilities and overcoming access barriers are important. In addition, changes in medical practice and attitudes are essential for advances in medicine and technology to have maximum impact on people with disabilities. Woolf et al. (2007) noted that it is these social and cultural shifts that drive both the development and accessibility of advanced medical care.
2.5 Medical training and best-practice medicine
Health care practitioners are often ill informed about the health care needs of people with disabilities, and the health related challenges faced by people with disabilities. As a result, people with disabilities do not receive the best treatment available. Furthermore, information about disability medicine and disability should be taught at an undergraduate level to medical and allied health students (Iacono et al., 2004). Best practice guidelines based on trials for various conditions are effective ways of ensuring that the best methods for treatment are kept up to date and individuals have the best chance of receiving the best care available (Myers & Johnson, 2007; White et al., 2007). Evidence-based medicine also serves to focus advances in medical technology via governing medical bodies selectively endorsing those advances and practices that are safe and effective, increasing the chances of maxmising benefit and minimising risk to the patient and to re-focus efforts on prevention (Fleisher et al., 1998). A good example of this is the promotion of folate and its fortification in foods. Bower et al. (2007) showed a decline in neural tube defects, anencephaly and spina bifida from 1980 to 2006 in Western Australia (Table 1) which is thought to be due to increased intake of maternal periconceptional folic acid supplements and in foods fortified with folic acid.
Table 1: Numbers and proportions of cases of birth defects by year of birth.
Neural Tube Defects
* Proportions are per 1,000 births and are only calculated if number of cases is greater than 13.
2.6 Coordination of health care
There is a need for health services to continue the shift from episodic care targeting acute symptoms to care management over the lifespan of the person with a disability as well as coordination of health care from various health providers. For example, in the case of spina bifida, many medical disciplines are involved in the care of an individual (Dunleavy, 2007). With advances in diagnostics, chronic care of spina bifida can begin prenatally and continue through the lifespan. Early intervention and sustained care can prevent disease sequelae such as kidney failure common if not treated in people with spina bifida (Ahmad & Granitsiotis, 2007; Dik et al., 2006). Sustained care can be further enhanced by multidisciplinary teams, which include generalists, such as a nurse coordinators (Dunleavy, 2007). The coordination of care can also improve the quality of life and experience of care for people with disabilities.
2.7 Awareness and accessibility of medical and technological advances
Many people with disabilities may not be aware of medical and technological advances that could help them to live more meaningful lives. In addition, they may not be able to afford to purchase equipment or avail surgery or pharmaceutical advances. For example, assistive technology, particularly the high tech ones are expensive (Shaughnessy et al., cited in Columbus, 2006). Kapperman et al. (2002; cited in Columbus 2006) noted that many students who could potentially benefit from assistive technology were not receiving them. This was mainly attributed to funding, competition and the conservative nature of education (Tinker, 2001 cited in Columbus, 2006).
2.8 Specific needs of women with disabilities
Women with disabilities are more likely to develop secondary conditions such as obesity, heart disease, hypertension, type II diabetes, osteoporosis and depression (Piotrowski and Snell, 2007). These women are likely to require the same or more intensive screening protocols as women in the general population. Women with disabilities who are in a wheel chair require special mammography equipment that is not universally available. The barrier of ‘invisibility’ of health care for women with disabilities needs to be overcome including appropriate support for transition points in the lifespan such as menopause that should not be ignored or de-emphasised in women with disabilities (Piotrowski and Snell, 2007).
2.9 Indigenous people with disabilities In Western Australia, 2,277 Indigenous Western Australians (4% of Indigenous Western Australians population) reported a need for core activity assistance (ABS, 2007). The life expectancy of Indigenous people in Western Australia is still 16 years less than non-Indigenous people. Indigenous people are known to have less access to services and advances in medicine and technology. The geographic dispersion of the Indigenous population is an important fact in delaying or limiting access to services. Many Indigenous people also experience extreme socio-economic disadvantages that impact on their health and wellbeing. Indigenous people have significantly lower incomes, higher unemployment rates and poorer educational outcomes. There is a need to improve access to services for Indigenous people.
2.10 Impact of economic rationalism and decision-making Over recent decades, economic rationalist principles have increasingly been applied by successive Australian governments to the health sector and impacted on decision making in terms of service rationing and provision (Germov, 2005). A central tenant of economic rationalist theory is the linkage of limited resources with their most effective utilisation and, market forces can dictate how limited resources will benefit the most people (Walker, 2003). Komesaroff (1999) noted that economic rationalism has seen the shift in decision-making from strategic long term goals to increasing reliance on the market to guide health sector development that is expected to put downward pressure on health costs and shift power balance from providers (doctors) to consumers (patients). The imperative of economic rationalism has been to ‘do more with less’ which raises concerns of equity and accessibility of service delivery (Leeder, 2003). Competition and economic incentives can lead to over servicing in some areas and under servicing in others (Komesaroff, 1999). The encroachment of commercial interests as a result of privatisation runs the risk that high return services are prioritised over looking after the needs of the elderly, chronically ill and people with disabilities (Brooks, 1999).