| ||||||||||||||||||||||||||||||||||||||||||||||||
Caring for patients with chronic neurological disease
Executive Editor, InnovAiT
E-mail: chantal.simon{at}oxfordjournals.org
The predominant disease pattern in the developed world is one of chronic or long-term illness. In the UK, 13–14% of the population has some disability and 28% of disability is accounted for by neurological or psychiatric problems. This is increasing as the population ages and people survive longer with disability. Patients with all types of chronic neurological disease are included in this group.
Although details of chronic illness management depend on the illness that the patient has, people with chronic diseases of all types have much in common with each other. They all have similar concerns and problems and must deal not only with their disease but also the impact that disease has on their emotions and lives. This article aims to help GPs in training with management of chronic neurological disease in the community.
Chronic disease management is covered by many curriculum statements within the GP Curriculum. Curriculum Statement 15.7 (Neurological problems) contains the following requirements of GPs in training:
Primary care management
Person-centred care
A holistic approach
Attitudinal aspects
|
 |
General principles of chronic disease management |
|---|
 TOPThe GP contract and... General principles of chronic... Management of specific problemsReferences |
|---|
Most patients are best managed by a multidisciplinary team in their home environment (if practicable) with a problem-oriented approach. Good interdisciplinary communication and co-ordination is essential and many patients benefit from specialist rehabilitation services. Psychological and sociocultural aspects are as important as medical aspects. Common patient concerns are listed in Box 1.
| Box 1.Common patient concerns may include Finding and using health services Finding and using other community resources Knowing how to recognize and respond to changes in a chronic disease Dealing with problems and emergencies Making decisions about when to seek medical help Using medicines and treatments effectively Knowing how to manage stress and depression that accompany a chronic illness Coping with fatigue, pain and sleep problems Getting enough exercise Maintaining good nutrition Working with doctors and other care providers Talking about illness with family and friends Managing work, family and social activities
|
The role of the GP
The GP of any patient receiving rehabilitation or ongoing care in the community is a team member and may be the key worker who co-ordinates care. In all cases, however peripherally involved the GP is, it is important for the GP to work in partnership with the patient, the family, and other professional team workers. Good outcomes are associated with clinicians working as a team towards a common goal with patients and their families (or carers) included as team members (Figure 1).
Try to become familiar with a patient's disease, even if it is rare. It is impossible to plan care without the knowledge of course and prognosis and an easy way to lose a patient's confidence if you appear ignorant of their condition.
When managing any chronic disease in the community, it is important to use a framework to ensure that limited resources are used to the greatest effect. Step professional care in intensity according to need. Proactive follow up according to a care plan is essential. Use disease registers and/or call–recall systems to ensure that follow up takes place.
At follow up, monitor the patient's condition. Do this using standard and repeatable disease and treatment markers. The Quality and Outcomes Framework rewards practices for recording secondary prevention treatment markers for stroke patients and recording disease and treatment markers for epilepsy (Table 1). Assessment of daily living tasks is also a useful measure for patients with chronic neurological disability. Several measures are available, but the most commonly used measure in the UK is the Barthel Index (Box 2). At each review, check medication concordance by monitoring prescription frequency. Provide information. There is good evidence that information alone can improve outcome. Then set goals for ongoing management. When doing this, consider the following points:
- Can the patient's physical symptoms be improved?
- Can the patient's psychological symptoms be improved (including self-esteem)?
- Can functioning within the home be improved? For example, would additional aids and adaptations within the home help? Does the patient or carer require extra help at home?
- Can functioning in the community be improved? Consider mobility outside the home, work and social activities.
- Can the patient's or carer's financial state be improved? Are there any benefits that the patient or carer should be claiming that are not being claimed? Are benefits being claimed at the correct rate? Further information about benefits can be obtained from the sources listed in Box 3.
- Does the carer need more support? Consider voluntary and self-help organizations (Box 4) and social services support.
|
Box 2.The modified Barthel assessment of daily living index 
|
Box 3. Further information about benefits
|
Goals must be meaningful, challenging but achievable. Use short- and long-term goals. Take into account the patient's and carer's views and experience and current evidence base to achieve shared goals. Renew, review and adapt these goals regularly.
|
|
|
Maintain an open door policy and encourage patients and carers to seek help for problems early. If progress is slower than expected or stalls or the patient starts to deteriorate, consider the following:
- Is it due to an unrelated disease? For example, change in bowel habit in someone who has had a stroke might indicate bowel cancer.
- Is it due to an incidental infection? Urinary tract infection and chest infection are common in patients with chronic neurological conditions.
- Is it due to a relapse? For example, acute relapse in a patient with multiple sclerosis or transient ischaemic attack or further stroke in a patient who has suffered a stroke in the past.
- Is it due to a side effect of treatment? For example, acute confusion, involuntary movements or the on–off effect in a patient with Parkinson's disease.
- Is it part of a gradual progression? There may be ongoing deterioration in patients with conditions such as multiple sclerosis, motor neurone disease or brain tumour.
Treat any cause of deterioration identified. If no cause is found consider re-referring for specialist review and/or referring to the multidisciplinary rehabilitation team involved with the patient.
Involving the patient and the family
Chronic diseases do not only affect the patient but everyone in a family. Make sure that any management plan involves the whole family. Negotiate and agree a definition of the problem, agree targets and goals for management and develop an individualized self-management plan.
A patient with chronic disability due to chronic neurological disease spends roughly 3 hours/year with a health professional. The other 8757 hours, the patient manages his own condition. Helping patients with chronic disease and understanding and taking responsibility for their condition is imperative. User-led, self-management education programmes are most effective and are becoming increasingly available, for example via the Expert Patients scheme (www.expertpatients.co.uk).
Give information about driving and employment if required. Guidance on medical standards of fitness to drive for patients with neurological conditions is available from the Driver and Vehicle Licensing Agency at website: www.dvla.gov.uk/medical/ataglance.aspx.
Informal carers
Informal carers are vitally important for the well-being of patients with chronic disability in the community. Most are relatives or friends of the person being cared for and do caring tasks for no payment. There is good evidence that carer's health suffers as a result of caring. Surveys show that roughly half of all carers have received treatment for a stress-related illness since becoming a carer and the same proportion report being physically injured as a result of caring. GPs and primary care teams are often the first point of access for any help needed. Three Quality and Outcome Framework points are available for practices that have a protocol for the identification of carers and a mechanism for the referral of carers for social services assessment.
Find out what the carer does for the patient. Always ask how the carer is—even if the carer is not your patient. Maintain good lines of communication, be accessible to carers and treat carers as equal members of the community support team. If the patient is happy for clinical information to be shared with the carer, record this in the patient's notes and ensure that the carer, as well as the patient, is kept fully informed about the management plan. Consider the physical, emotional and financial challenges that the carer is facing.
Carers performing nursing tasks may benefit from help and advice from district or community nurses if they have any practical nursing problems or advice from specialist nurses, such as specialist epilepsy or stroke nurses, if the carer has management problems relating to the patient's condition. Additional help at home may be required to allow the carer to concentrate on looking after the patient. Social services provide home care services and this may be subsidized depending on the family income. Every carer has a right to ask for a full assessment of their needs by the social services. Many other private organizations also provide home care and cleaning services. Voluntary organizations, such as Crossroads schemes (www.crossroads.org.uk) may provide sitting services.
Additional equipment or home modifications may also be needed to enable a patient to be cared for at home. Home modifications are arranged through local authorities. District nurses usually have access to any equipment needed for nursing. In addition, the Red Cross also loan commodes, wheelchairs and other equipment for patients. A letter may be required from the GP confirming the patient's condition in some instances.
Caring for someone on a long-term basis can be an emotionally draining experience. In many areas, there are carer support groups that enable carers to share information, their experiences and provide mutual support for each other. If the carer has a religion, another good source of support is the local religious community.
Many carers benefit from having a break. Hospitals, charity organizations and local authorities provide day care to give regular breaks each week and also respite care for a week or more at a time.
Carers may be entitled to carer's allowance if they are not in full-time education and earning less than £87 per week after allowable expenses and if they care for someone else who is in receipt of attendance allowance or the middle or higher rate care component of disability living allowance, for more than 35 hours a week. Claims can be made on form DS700 (or DS700 SP if receiving state retirement pension), by telephone (Tel: 0800 055 6688) or online (www.direct.gov.uk/carers).
|
Management of specific problems |
|---|
|
TOPThe GP contract and...General principles of chronic...Management of specific problemsReferences |
|---|
When caring for a patient with a chronic neurological condition in the community, it is important not only to manage the day-to-day medical problems of the patient but also to consider rehabilitation of the patient and any other medical problems linked to the patient's underlying condition. Combine therapeutic with problem-solving approaches.
Motor impairment
Aim to maintain physical independence. Consider involving physiotherapy. Often only two or three appointments are needed to improve mobility. Consider involving an OT either through the rehabilitation services or social services. OTs use task-oriented approaches, such as learning how to dress. They can also supply and/or advise on aids and appliances such as Velcro fasteners, wheelchairs or adapted cutlery. Social services OTs can arrange for home modifications to be made if needed. Consider referring for home care services if needed.
Spasticity and muscle or joint contractures
Treat spasticity and muscle or joint contractures with physiotherapy, usually involving exercise together with splinting and/or drugs. Antispasticity drugs include dantrolene (25 mg o.d.), baclofen (5 mg t.d.s. or rarely through a pump) and tizanidine (2 mg o.d.). Injected botulinum toxin can be directed at specific muscles. Refer via the specialist rehabilitation team.
Communication problems
Communication problems are extremely frustrating for patients and carers alike. Speech and language therapy assessment is vital. Consider support via dysphasia groups and communication aids, such as simple pointing boards. Take advice from the speech therapist and OT.
Poor vision
Refer patients with poor vision to an optician in the first instance. If corrected vision is still poor, refer for ophthalmology review.
Pain
Many patients with chronic neurological problems suffer pain. Most pain arises from reduced mobility. Other causes include premorbid disease (such as osteoarthritis), central pain due to neurological damage and neuropathic pain. Patients may have more than one type of pain. For each pain assess site, onset, character of the pain, radiation, associated features, timing and pattern, exacerbating and relieving factors and severity.
Abolition of pain may be impossible. About 70% of patients continue to have pain despite analgesia. The aim is often rehabilitation with reduction in distress and disability rather than complete pain relief. If analgesia is not helping, then stop it. A multidisciplinary approach to pain management is essential. Consider the following:
- Prevention: for example, wrist splints for carpal tunnel syndrome and regular analgesia
- Removal of the cause: Treat medical causes of pain, for example infection. Consider joint injection for an inflamed joint. Refer surgical causes for surgery if surgery is appropriate, for example joint replacement for osteoarthritis.
- Pain-relieving drugs: Start with a single drug at low dose and step up the dose or add another drug as needed—. After an episode of acute pain, step down the analgesia if the pain diminishes. Consider using amitriptyline or gabapentin for nerve pain or central pain. Use of cannabinoids for relief of pain and muscle spasm in multiple sclerosis is currently under assessment.
- Physical therapies: Acupuncture, physiotherapy or transdermal electrical nerve stimulation can be helpful in some cases
- Nerve blocks: Consider referral if the patient has intractable nerve pain
- Modification of emotional response: Psychotropic drugs such as anxiolytics or antidepressants may be helpful in some cases
- Modification of behavioural response: Consider referral to a rehabilitation scheme.
If you are unable to remove cause of the pain and/or unable to achieve adequate pain relief, consider referral to a specialist pain control clinic.
Respiratory infections
Respiratory infections are common among patients with chronic neurological disease. Poor coughing can result in build-up of secretions making chest infection more likely and harder to clear. Treat with antibiotics unless the patient is in terminal stages of disease. Advise all patients with chronic neurological conditions to have pneumococcal and influenza vaccination.
Bladder problems
Urinary tract infection is common among patients with chronic neurological conditions due to failure to completely evacuate the bladder when passing urine. For patients without a permanent indwelling catheter, if a urine infection is suspected, check the urine with a dipstick for blood, protein, leucocytes and nitrites. Send a midstream sample for microscopy, culture and sensitivities. Start antibiotics immediately if the patient is symptomatic, otherwise wait until confirmation of infection and sensitivities. If a patient has more than three proven urinary tract infections in a year, refer to urology for further assessment. Patients with permanent, indwelling catheters often have chronic urinary infection. Only treat if symptomatic.
Incontinence of urine is also a common problem. In all cases, manipulate fluid intake—amount, type (avoid tea, coffee and alcohol) and timing of fluids. Consider altering medication exacerbating the problem, for example altering the timing of diuretics. Avoid constipation as this often makes the problem worse, and promote weight loss if the patient is obese. Consider the reason for the incontinence. Around 30% will have a mixed pattern of incontinence.
- Functional incontinence—there is no urological problem. Incontinence is caused by other factors such as immobility and/or inaccessible toilets, behavioural problems or cognitive deficit.
- Stress incontinence—leakage on straining or coughing. Pelvic floor exercises continued for at least 3 months help about 60% of patients. Exercises may be assisted by vaginal cones and/or electrical stimulation. Mechanical devices (such as the Conveen continence guard) help around 75% of patients with stress incontinence.
- Urge incontinence or urgency—the need to pass urine immediately. Modify the environment, for example provide a commode. Try bladder training programmes. The patient should resist the urge to pass urine for increasing periods. Start with an achievable interval based on diary evidence and increase slowly. Drugs may be helpful, for example tolterodine 2 mg twice daily or oxybutynin 5 mg three times a day. Amitriptyline 10–50 mg nocte may be useful for night-time symptoms.
- Overflow incontinence—incontinence in the presence of a large bladder. The most common reason is benign prostatic hyperplasia. Refer to urology for investigation and relief of the obstruction.
Specialist continence advisors (or community nurses with specialist training) are invaluable for advice on aids and appliances for incontinence, advice on primary care management of incontinence and patient support. In all cases, refer for specialist assessment if GP management has failed.
Bowel problems
Constipation is a common problem, often exacerbated in patients with neurological disease by immobility and reduced fluid intake. If a patient is having difficulty with defaecation or opening his or her bowels less than twice a week, recommend increased fluid intake and addition of fibre to the diet. If there is no improvement with these measures, consider prescribing a regular laxative. It may be necessary to combine this with regular suppositories and/or enemas. Involve the community nursing team. Always consider constipation with overflow if a previously continent patient presents with faecal incontinence.
Dysphagia is also common among patients with chronic neurological disease. In general, fluids are more difficult to swallow than semisolids. Formal assessment by trained staff, such as a speech and language therapist, is essential. Thickening of feeds may help. Feeding through nasogastric tubes or percutaneous endoscopic gastrostomy may be needed long or short term. For patients with terminal neurological disease, such as motor neurone disease, weigh provision of nutrition against prolongation of poor-quality life.
Venous thrombo-embolism
Deep vein thrombosis (DVT) is common amongst patients with chronic neurological disease, especially those who are immobile. However, DVT is clinically apparent in less than 5%. Ensure adequate hydration and encourage mobility. Consider the use of aspirin 75–150 mg daily and compression stockings as preventative measures if the patient is immobile. Prophylactic anticoagulation does not improve outcome.
Skin breakdown
Skin breakdown leading to pressure sores is a particular problem of immobile patients. It can be prevented by positioning and regular repositioning, mobilization, good skin care, management of incontinence and pressure relieving aids such as special mattresses or cushions. Involve the community nursing services if you are worried about the possibility of a patient developing pressure sores.
Fatigue
Fatigue is a very non-specific symptom common in patients with most chronic diseases of any sort. Consider and treat factors which might be responsible such as depression, chronic pain, disturbed sleep or poor nutrition. Review the patient's support, diet and medication. Encourage graded aerobic exercise. Consider a trial of amantadine 200 mg daily to improve symptoms if all else fails.
Depression and anxiety
It is estimated that 70% of patients with Parkinson's disease have depression. Depression is also common among stroke patients and those with multiple sclerosis and motor neurone disease. Fatigue, sleep disturbance and unexplained pain are frequent presentations of underlying depression. Use the NICE depression screening questions to detect depression:
- During the last month, have you often been bothered by feeling down, depressed or hopeless?
- During the last month, have you often been bothered by having little interest or pleasure in doing things?
A positive response to either of these questions should prompt further assessment. Depending on the severity of the depression, consider additional support, for example with counselling or through disease-specific organizations and/or drug therapy with antidepressants.
Note: If the patient cries (or laughs) with minimal provocation, consider emotionalism—impairment in the control of crying. This is common after stroke and does not imply depression. Reassure the patient and the carer.
Sexual and personal relationships
Problems with sexual and personal relationships are common among patients with chronic neurological problems and often hard for them to talk about. Useful information sheets are available at website: www.outsiders.org.uk/leaflets.
| Box 4. Disability support organizations General disability support organizations:
Specific neurological disability support organizations:
|
Key points
|
|
References |
|---|
|
TOPThe GP contract and...General principles of chronic...Management of specific problemsReferences |
|---|
-
NICE. The diagnosis and management of the epilepsies in adults and children in primary and secondary care (2004) Available from: www.nice.nhs.uk/nicemedia/pdf/=CG020fullguideline.pdf. [date last accessed 27.02.2008].
NICE. Parkinson's disease: national clinical guideline for diagnosis and management in primary and secondary care (2006) Available from: www.nice.nhs.uk/nicemedia/pdf/cg035fullguideline.pdf [date last accessed 27.02.2008].
NICE. Pressure ulcer risk assessment and prevention (2001) Available from: www.nice.nhs.uk/nicemedia/pdf/clinicalguidelinepressuresoreguidancercn.pdf [date last accessed 27.02.2008].
Royal College of Physicians/NICE. Multiple Sclerosis: national clinical guideline for diagnosis and management in primary and secondary care (2004) Available from: www.rcplondon.ac.uk/pubs/books/MS/MSfulldocument.pdf [date last accessed 27.02.2008].
Royal College of Physicians. National clinical guidelines for stroke (2004) 2nd edition. Available from: www.rcplondon.ac.uk/pubs/books/stroke/index.htm [date last accessed 27.02.2008].
Royal College of Physicians. Primary care concise guidelines for stroke (2004) Available from: www.rcplondon.ac.uk/pubs/books/stroke/stroke_primarycare_2ed.pdf [date last accessed 27.02.2008].
Simon C. Oxford general practice library: neurology (2006) Oxford: Oxford University Press.
Von Korff M, Sharpe M. ABC of psychological medicine: organising care for chronic illness. BMJ (2002) 325:92–94.
Young J, Forster A. Review of stroke rehabilitation. BMJ (2007) 334:86–90.
CiteULike 
Connotea 
Del.icio.us What's this?
| ||||||||||||||||||||||||||||||||||||||||||||||||