Practical aspects of managing patients with additional needs: a guide for eye care providers.
A good definition for patients with additional needs is offered by the American Academy of Paediatric Dentistry (AAPD), which states that these are individuals who "have a physical, developmental, mental, sensory, behavioural, cognitive or emotional impairment or limiting condition that requires medical management, healthcare intervention, and/or use of specialised services or programs. The condition may be developmental or acquired and may cause limitations in performing daily self-maintenance activities or substantial limitations in a major life activity. Healthcare for special needs patients is beyond that considered routine and requires specialised knowledge, increased awareness and attention, and accommodation". (2)
A large number of diseases can leave a patient disabled. However, this article concentrates on some aspects of the eye health-related issues in patients with Alzheimer's disease and stroke, as well as in people diagnosed with autism, cerebral palsy or Down's syndrome.
Alzheimer's Disease (AD)
"People with Alzheimer's get lost not because they don't remember where they've been, but because they can't see where they're going." (Dr Charles Duffy, University of Rochester, New York).
AD is the most common form of dementia, a group of disorders characterised by progressive cognitive decline. Memory loss, language, motor and visual difficulties are all important parts of this disease. (3) In the UK there are currently approximately 700,000 people suffering from AD and related dementia, costing the economy over 17bn [pounds sterling] a year (Alzheimer's Society report, February 2007).
A very important and often unrecognised pathology in patients suffering from AD is the loss of visual function. Changes in contrast sensitivity, colour vision, motion and depth perception, as well as an inability to recognise faces, shapes and patterns are often reported. (3) Moreover, glaucoma is a disease encountered with a high frequency in patients suffering from AD. (4) Glaucoma affects the starting point of the visual pathway (the optic nerve head) whilst AD destructs the final segment of the neural system, and therefore the impact on the visual function of a person who has the coexistence of these two diseases is greater, hnportant effects on the visual system in patients suffering from AD are outlined in Table 1.
Since vision deterioration in AD can occur simultaneously with memory loss, early detection of dementia through vision tests has become of great interest. Table 2 describes the possible tests that might be useful for such purposes. (19)
Although not easy, managing patients suffering from AD could be extremely rewarding for the eye care provider; improving the vision of these patients could have a dramatic positive effect on their quality of life. However, only a few practitioners are trained to deal with this type of patient. Communication skills are of extreme importance; even in its early stages, patients suffering from dementia find it difficult to select the correct words to express their thoughts or to remember simple things. The best strategies for communicating with AD patients can be developed from nursing practice; listed below are some tips that might be of help for the eye care provider (adapted from Robinson et al. (21) and Baker (22)):
* Present yourself and explain your role
* Address the patient directly
* Be gentle and do not interrupt
* Reassure the patient by voice and a gentle touch; patients suffering from AD can become easily frustrated
* Avoid distractions such as background noise
* Speak slowly, pausing before and alter significant words
* Use simple questions that require either "yes" or "no" as an answer
* Move slowly
* Give choices/response options Use the same language as the patient and ask the carer about the possible meanings of words/sentences
* Do one thing at a time and repeat instructions
* Don't patronise and don't argue with the patient
* Always thank and praise the patient.
While examining a patient suffering from AD, the characteristics of this disorder, such as defective memory, unreliability in providing accurate answers, confusion, slow response, and low attention span, make their examination very challenging for any professional. The general approach should include:
* Observation of any characteristics that indicate visual dysfunction, such as unsteady gait or abnormal head position;
* Careful examination of the ocular movements and pupil reactions; however, be aware that using strong lights may frighten the patient;
* An assessment of visual dysfunction depends on the degree of responsiveness. Snellen charts are not useful, and Cardiff Acuity Tests do not work well with most AD patients;
* Use of hand-held air-puff tonometers to measure intraocular pressure (IOP); Use of hand-held optometers (Nikon, Retinomax) for objective refraction.
Correcting any deficits in refraction should not be considered unnecessary in a patient suffering from AD. Carers should be trained to encourage the patient to wear the correction whenever necessary. In addition, as most of the patients misplace their glasses or forget to use them, advise carers to have a spare pair at hand and to label them. (23)
The eye care provider could also apply other methods to increase the quality of vision in patients with AD:
* Use of yellow filters, which have been proven to increase reading speed and contrast sensitivity in patients with retinitis pigmentosa (RP) and glaucoma (24)
Cataract removal; this could improve not only the visual acuity but it may also be an important tool in helping those patients suffering from visual hallucinations; (18) however, no prospective study has been done to prove the role of vision improvement through cataract surgery on the wellbeing of patients suffering from AD
* High contrast intervention procedures; it has been proven that measures such as increasing colour contrast in a patient's familiar environment could result in better behaviour. Using red coloured tableware has increased food intake by 25% and liquid intake by 85% in patients suffering from AD. (25) Indeed, this could have a tremendous effect on the quality of life in these patients
* Increase lighting in the patient's familiar environment
* Schedule annual or biannual eye exams in patients suffering from AD. (24)
If correctly implemented, all of these recommendations could help the eye care provider to play a vital role in the management of patients suffering from AD. More research is needed to identify the best method of assessing visual dysfunction and to understand the benefits of proper visual correction in these patients. In addition, more effort should be made in order to offer better screening and correction for visual dysfunction in patients suffering from AD, especially in those living in nursing homes.
Stroke is a common neurological emergency that can result in death. It occurs when an area of the brain is deprived of blood either through vessel occlusion or breakage. It is estimated that in the UK, approximately 150,000 people have a stroke every year (The Stroke Association, http://www.stroke.org.uk) and more than 250,000 people are disabled by this. The risk factors for stroke include: (26)
* Age; the risk doubles every 10 years after the age of 55
* Gender; higher risk in men prior to the age of 65 years. The risk is higher in women above the age of 65 years
* Race; Afro-Caribbean's have a higher risk than Caucasians
* Family history; greater risk when a first-degree relative has suffered a stroke
* Sedentary life style
* Systemic pathology such as high blood pressure (the most important risk factor), carotid artery disease, cardiac arrhythmias, diabetes, high levels of lipids in the blood
* History of transient ischaemic attacks (TIA) or amaurosis fugax, defined as short periods of neurological/visual disturbances
* Previous historv of stroke; the risk is double in those who have already suffered a stroke
* It has been suggested that patients diagnosed with age-related macular degeneration (AMD) are twice as likely to develop a stroke than the normal population. (27)
By quickly recognising the above risk factors, especially those manifesting in the visual system, the optometrist could play a very important role in stroke prevention. However, if and when a stroke occurs, the involvement of the eve care providers is more complex.
Visual problems encountered in stroke are detailed in Table 3. (28) One very important symptom that is represented is the so-called "visual or hemispatial neglect", a visual attention dysflmction in which the patient is not aware of half of their visual surroundings. This problem can occur with or without a visual field defect. It is diagnosed by observing the patient behaviour and by using some specialised tests, such as visual and sensory confrontation tests and the line bisection test. (29) These patients are more disabled and take longer to recover than others and, therefore, need special multidisciplinary approach for their management.
One of the most important challenges when examining patients that have suffered a stroke is represented by the inability to communicate efficiently with them. Communication disorders , such as aphasia (impaired speech and language understanding), dysarthria (difficulties in talking caused by muscle weaknesses) and speech apraxia (inability of patients to express themselves correctly and consistently) are common after a stroke. Added to the motor and other type of impairments, the above changes can result in a major psychological trauma lot the patient. The patients may be irritable, anxious, and frustrated. Therefore, the eye care provider should look at ways to improve comprehension and communication that would finally lead to better management of these individuals. Some useful tips include:
* Always address the patient directly
* Speak clearly and slowly using few words, which the patient can understand
* Listen patiently and encourage the patient to speak
* Do not patronise the patient
* Use large prints
* Always praise the patient.
Appropriate correction of any refractive error, use of prisms and monocular patching for binocular vision problems and visual training procedures should be considered in order to visually rehabilitate these patients. Consultation with other health professionals involved in the patient's management should always be considered a priority.
Autistic spectrum disorders (ASD)
"My mother was a smell and a texture, my father a tone, and my older brother was something which moved about." (Donna Williams, writer and suffering from antism).
Autistic spectrum disorders (ASD) represent a common pathological neuro-developmental entity characterised by lack of social interaction, abnormal communication and limited language as well as by repetitive, stereotyped activities/ behaviours. This spectrum includes conditions such as autism, Asperger's syndrome, Rett's Disorder, childhood disintegrative disorder (CDD) and pervasive developmental disorder (PDD). These disorders affect over 500,000 people in the UK according to sources (The National Autistic Society, http://www.nas.org.uk).
The visual features associated within this category of disorders include atypical gaze (side viewing), difficulty in maintaining visual attention, and difficulties with face processing. These patients may also experience scotopic sensitivity or Meares-Irlen syndrome, which can result in hypersensitivity to light, abnormal movement of text, difficulty with high contrast, difficulty maintaining attention, and tunnel vision. (30) More typical visual defects such as refractive errors, strabismus, and oculomotor dysfunction can also be present. Moreover, autism can be diagnosed more often in blind or visually impaired children. (31,32)
Due to the extensive behavioural problems, patients suffering from ASD can be a challenge for any healthcare professional. Most of the time, inability to perform well with tasks such as writing or reading are labelled as part of the disorder. However, it is possible that adequate eye examination will detect correctable vision problems that can be easily addressed, resulting in great benefits for the child's behaviour and performance.
Below are some recommendations that might help for managing eye-related problems in such children (adapted from The National Autistic Society: Patients with autistic spectrum disorders--information for health professionals):
* Try to get a complete history from the patient or carer
* Observe the patient's special postural adaptations
* Use simple and specific words when explaining what are you doing; avoid metaphors and words with double meanings and always check if the patient has understood your instructions
* Warn the patients before touching them; often these children are over-stimulated by touch
* Ask the carer for help when needed
* Use agitation and unusual behaviour as a sign that a manoeuvre is uncomfortable or even painful Be aware that even low level of noise may increase the child's stress level
* Snellen or LogMAR can be used in some patients; for others, single letters are better. Picture tests can be really useful especially for children or adults who use sign communication (eg Makaton)
* Test near vision; this is particularly important in autistic patients as most of their daily routine is controlled through written schedules, close work, etc.
* Use preferential looking in patients who are unable to communicate
* Test ocular motility, binocularity, eye tracking, fixation, depth perception, colour vision, visual fields
* Be careful when performing illumination techniques or fundus examination; even a pen light can trigger a seizure in some of these patients.
* Explain in detail your findings
* Explain the need for correction, what glasses are needed and when they should be worn; terms like "all the time" will be taken literally and it is possible that the patient will want to go to sleep with the glasses on!
* Improve refractive errors
* Recommend vision training
* Use coloured transparencies/tinted glasses to reduce contrast and hence improve vision if Meares-Irlen syndrome is present; the colour of the transparency/lenses could be different from one patient to another (30)
* Refer to a behavioural optometrist who will develop a specific management plan for each patient
* Schedule appointments to check progress
* Be in permanent contact with the rest of the medical team that manages the patient
Cerebral palsy (CP) represents a common neurological disorder (2-2.5 per 1,000 live births) characterised by abnormal motor function that can be caused by brain insult, such as trauma, hypoxia, haemorrhage, infection, and toxicity occurring pre-, during or postnatal. There are three types of CP: spastic (more than 50% of all cases), characterised by muscle stiffness and difficult movements; athetoid (2030%), characterised by involuntary movements and primitive reflexes; and ataxic (1-10%), which results in abnormal balance and uncoordinated movements. Mixed forms can also occur, accounting for the rest of the cases,
Besides abnormal motor function, patients suffering from CP can present with defects of vision, hearing or speech, mental retardation, seizures, and even defects of basic functions such as breathing, bladder/bowel control, and feeding. Visual impairments are quite common (in 4075% of cases), with high incidence of hypermetropia, (33) ocular motility disturbances, (34) accommodative dysfunction associated with more severe motor and intellectual impairment, (35) optic atrophy, (34) and defective function of the retro-chiasmic visual system; this presents as an inability to fixate, to direct gaze towards a stimulus, chaotic eye movements and overlooking. (36)
When examining a patient suffering from CR the following steps should be taken to aid the care of such patients:
* Have your practice prepared to accommodate patients using wheelchairs, braces, or walkers: more than 50% of patients with CP are dependent on these devices
* Always have the carer present; this is useful for reassurance and interpretation (37)
* Include in the history questions about activities that seem to be avoided by the patient; note indications about shifting gaze, focus on objects and eye-hand coordination
* Assess and understand the emotional level of the patient
* Ask the patient/carer what visual/head positions are better/worse for visual activities
* Explain all procedures and equipment
* Perform early and regular eye examinations to detect refractive errors/ accommodative dysfunction
Down's syndrome represents an entity associated with a distinct physical aspect and some degree of cognitive impairment. Approximately 1 in 800 babies are born with this syndrome. Advanced maternal age is a risk factor. However, systematic prenatal screening for this disease in older mothers as well as an increased number of pregnancies in younger women, haw; resulted in the finding that at present, most children with Down's syndrome are actually born to mothers under the age of 30 years. (38)
Down's syndrome is associated with a large number of distinct physical features and multi-system anomalies, as described in Table 4.
From a behavioural point of view, a person with Down's syndrome can express frequent anxieties. However, spontaneity, warmth, cheerful presence, gentleness, and tolerance are also very characteristic of these individuals. (39)
Children with Down's syndrome experience an increased number of eye health-related complaints (Table 5). Nevertheless, most of these conditions are similar to those occurring in any other children. In addition, age-related visual problems may occur earlier in a person with Down's syndrome compared to the general population.
A child with Down's syndrome needs to be examined as soon as possible as early intervention could result in a better visual outcome. The Down's Syndrome Medical Interest Group has published some guidelines for health checks in these individuals. Eye examinations should be performed every 2-3 years during the school period, although other guidelines recommend that an examination should be performed at least every year, whilst a schedule of examination from birth up to and including the age of 4.5 years of age is as shown in Table 6. (40)
To maximise cooperation, the eye care provider may choose to follow some of the following steps:
* If possible, examine children in familiar surroundings
* Book early slots and allocate extra time
* Advise parents/teachers that even when wearing glasses, vision may be below normal, especially for near tasks (41)
* Be aware of the general emotional context: parents are often anxious, insecure or even depressed. Sensitively provide accurate information for parents regarding their child's vision/eye health and reassure them all the time (1)
* Be patient and allow the patient enough time to answer questions/respond to stimuli
* Reassure patients all the time and be friendly: they tend to blame themselves even for minor incidents in which they do not play a role! (1)
* Use tests developed specially for these type of children, such as Cardiff Acuity Test cards or the Kay Picture Test to assess vision (1)
* Always be in touch with the multidisciplinary medical team that manages the patient
A certain number of patients seeking medical attention for various ocular pathologies also have additional health care needs. Moreover, they could suffer from more serious forms of ocular pathologies than in the average patient. As these individuals have difficulties with understanding and cooperating, their management could be delayed or become improper through a lack of knowledge on how to best deal with these patients. Therefore, in order to provide a good quality health service, eye care providers should have basic knowledge about the unique qualities and specific pathology that these patients may present with. Although some of these patients are living in special care centres and, therefore, specially trained personnel determine their ocular health, it is still possible that the eye care provider will encounter such individuals in their practice. There is little guidance to assist professionals in completing a comprehensive examination in these patients but this article has provided some general tips and guidance that should be of help in the day-to-day eye-care practice.
By simply prescribing appropriate refractive corrections, the eye care provider could improve not only the behaviour and quality of life but also the gross and fine motor skills of patients with such problems. (42) Through their newly developed clinical decision making skills, optometrists can decide upon appropriate care of additional needs patients. In addition, optometry schools should include in their programmes lectures and practical skills sessions on specific ocular healthcare-related issues in patients with additional needs during which students can interact with such individuals and learn. (43)
Dr Doina Gherghel is an academic ophthalmologist at Aston University. She has special interests in glaucoma, diabetes, vascular medicine, and the effect of ocular pathologies on quality of life in Alzheimer's disease. Dr Gherghel also coordinates the Vascular Research Laboratory of the Ophthalmic Research Group.
Table 1: Possible effects of Alzheimer's disease on the visual system Anatomic Effects Retina Abnormal nerve fibre layer and retinal ganglion cells (5-7) Macula Macular cell loss (8) Optic Disc Glaucomatous optic nerve cupping (9) Lens Supranuclear cataract (10) Exfoliation (11) Pupil Abnormal pupillary innervation (12,13) Functional Effects Visual Acuity Decreased visual acuity (3) Visual Fields Visual field loss (inferior) (14) Rapid loss of visual field in patients with AD and glaucoma (4) Contrast Sensitivity Reduced contrast sensitivity Colour Vision Abnormal colour discrimination (blue, short-wavelength hues) (15) Eye Movements Delayed saccadic eye movements (3) Retinal Transmission Abnormal flash visual evoked potentials (VEPs) (3) Cognitive Effects Visual Processing Abnormal visual sustained/divided/selective attention and visual processing speed (16) Facial Recognition Impaired face recognition (17) Stereonsis Inability to recognise denth (3) Excessive pharmacological mydriasis/miosis (12,13) Visual hallucinations (in more than 20% of patients) (18) Table 2: Vision tests for possible early detection and monitoring of Alzheimer's disease Test Use Benton visual retention * Tests visual memory test * Might be able to predict risk for AD 10-15 years before the onset of the disease Contrast sensitivity * AD patients have selectively reduced contrast sensitivity for distinguishing large objects and faces Useful field of view * Tests processing speed, divided attention and selective attention * Facilitates detection of "attentional dysfunction"; patients suffering from this problem complain of poor vision and an inability to identify someone in a group or an object on a patterned background" * Could be useful to assess fitness to drive Facial recognition * Tests that use facial expressions with progressively diminished degree of contrast * AD patients do not recognise faces with large features and low contrast * AD patients do not recognise familiar faces (due to impaired memory) Table 3: Visual features of patients who have suffered from a stroke Abnormal ocular * Conjugate ocular deviation towards the affected motility hemisphere in acute stroke * Cranial nerve palsies * Internuclear ophthalmoplegia * Nystagmus * Ocular dysmetria * Squint * Diplopia * Reduced stereopsis * Reduced binocular convergence * Accommodative insufficiency * Asthenopia Abnormal visual * Loss of vision function * Visual neglect * Transitory visual field defects * Homonymous hemianopias Other * Photophobia * Headaches * Ptosis * Cortical blindness * Abnormal hand-eye coordination * Difficulty reading Table 4: Physical features and systemic anomalies present in Down's syndrome Physical features Neurological and Associated Systematic mental Impairments Conditions * Small head with * Mild to severe * Congenital heart flat occipital cognitive impairment defects * Depressed nasal * Seizures * Leukaemia bridge * Delayed speech * Hypothyroidism * Hypertelorism * Delayed motor * Various infections * Large, short neck abilities and skin conditions with excess skin * High incidence of * Congenital * Small mouth with AD in older gastrointestinal large tongue and individuals and genitourinary abnormal dentition * Increased risk for abnormalities * Short stature autism, attention * Diabetes * Short hands/feet deficit disorder * Decreased fertility curved 5th finger (ADD), obsessive- * Immunodeficiency and transverse compulsive behaviour palmar creases and depression * Protuberant abdomen, obesity * Bilateral epicanthus and upward slanting of the palpebral fissures * Premature ageing Table 5: Ocular characteristics of Down's syndrome Anterior segment Posterior segment Other * Brushfield spots * Glaucoma * Refractive errors on the periphery * Pseudopapilloedema * Hypermetropia, myopia, of the iris astigmantism * Cataract * Accommodation deficiency * Keratoconus * Amblyopia * Strabismus * Nystagmus * Epicanthal folds * Recurrent infections (blepharitis, blepharoconjunctivitis, hordeola) * Nasolacrimal duct obstruction * Congenital ectropion Table 6: Suggested schedule for eye examinations in children with Down's syndrome 0-6 weeks 6-12 months Eye Examination Assess visual Assess visual behaviour and behaviour and check for check for congenital strabismus cataract 18-24 months 4-4.5 Years Eye Examination Orthoptic and Full Ophthalmic ophthalmic examination and examination, and refraction refraction
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|Title Annotation:||MANAGING ADDITIONAL NEEDS PATIENTS|
|Date:||May 8, 2009|
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