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Ovid: Oxford Handbook of General Practice

Editors: Simon, Chantal; Everitt, Hazel; Kendrick, Tony Title: Oxford Handbook of General Practice, 2nd Edition Copyright ©2005 Oxford University Press > Table of Contents > Chapter 6 – Chronic disease management Chapter 6 Chronic disease management Chronic disease The predominant disease pattern in the developed world is one of chronic or long-term illness. In the UK, 17.5 million adults are currently living with a chronic disease. Long-term conditions frequently seen and managed in general practice are: DM, arthritis (of all types), cancer, back pain, asthma and other chronic lung disease, irritable bowel syndrome, chronic inflammatory bowel disease, stroke, Parkinson’s disease, multiple sclerosis and other neurological conditions, hypertension, heart disease, hypercholesterolaemia, dementia, depression, renal and liver failure. Although details of chronic illness management depend on the illness, people with chronic diseases of all types have much in common with each other. They all:

  • Have similar concerns and problems (p.170)
  • Must deal not only with their disease(s) but also the impact it has on their lives and emotions

Common elements of effective chronic illness management

  • Involvement of the whole family: Chronic diseases do not only affect the patient but everyone in a family.
  • Collaboration between service providers and patients/carers:
    • Negotiate and agree a definition of the problem
    • Agree targets and goals for management
    • Develop an individualized self-management plan
  • Personalized written care plan: Take into account patient/carers’ views and experience and the current evidence base.
  • Tailored education in self-management: A diabetic spends ~3h./y. with a health professional—during the other 8757h. he manages his own condition. Helping patients with chronic disease to understand and take responsibility for their condition is imperative. User-led (i.e. led by someone who suffers from the condition) self-management education programmes are most effective.
  • Planned follow-up: Pro-active follow-up according to the care plan—use of disease registers and call-recall systems is important.
  • Monitoring of outcome and adherence to treatment:
    • Use of disease and treatment markers
    • Monitoring of compliance e.g. checking prescription frequency (p.124)
    • Medicine management programmes (p. 124)
  • Tools and protocols for stepped care:
    • Provide a framework for using limited resources to greatest effect
    • Step professional care in intensity
    • Start with limited professional input and systematic monitoring
    • Augment care for patients who do not achieve an acceptable outcome
    • Initial and subsequent treatments are selected according to evidence-based guidelines in light of a patient’s progress (p.86)
  • P.167

  • Targeted use of specialist services: For those patients who cannot be managed in primary care alone.
  • Monitoring of process: Continually monitor management of patients with chronic disease through clinical governance mechanisms (p.80). Ensure changes are made promptly to optimize care.

Essential reading Von Korff et al. (2002) Organising care for chronic illness. BMJ 325:92–4 P.168
National Service Frameworks National Service Frameworks (NSFs) are models of how services should be provided. They were developed to improve patient care and address variations in service provision across the country and are a key part of NHS quality initiatives. They cover all areas of service delivery—not just clinical practice. There will usually be one new framework each year.

Table 6.1 NSFs in existence/preparation
Topic Date of publication
Mental Health September 1999
Coronary Heart Disease March 2000
Older People March 2001
Diabetes December 2001/January 2003
National Cancer Plan September 2000
Renal Services January 2004/February 2005
Children’s Services September 2004
Long-term conditions (focusing on neurological conditions) March 2005
image Full text of all published NSFs is available on the DoH website http://www.dh.gov.uk


  • To set national standards
  • To define service models and identify key interventions for specific service or care groups
  • To put in place programmes to support implementation
  • To establish performance measures against which progress within an agreed timescale will be measured

What can the PCO do?

  • Consider employing a nurse with specialist skills to work across the PCO (e.g. cardiology nurse) and explore ways of supporting GPs to develop ‘special interests’ in an NSF-related disease area (p.32)
  • Work with voluntary agencies and others to commission user-led self-management programmes
  • Support practices with installation of disease management templates
  • Set clear standards/guidelines for repeat prescribing
  • Work with local secondary care trusts on prescribing issues
  • Explore different ways of providing services to help practices cope with rising demand (e.g. phlebotomy support)
  • Ensure effective leadership in major disease areas/clinical governance
  • Encourage sharing of approaches and good practice across the PCO

What can the practice do?

  • Set up chronic disease management clinics for conditions/patient groups covered by the NSFs
  • Develop nursing skills within the practice to improve patient education and self-management, and allow nurse prescribing
  • Provide information about/access to self-management programmes and information and advice on self-monitoring for patients with chronic diseases
  • Make effective use of computer-based disease management templates
  • Implement NICE guidelines on drugs and review prescribing practice to ensure it reflects NSF objectives
  • Ensure there is a suitable forum for learning from others’ experiences across the practice e.g. how a difficult or unusual case/presentation was handled

Monitoring NSF standards The Healthcare Commission (or CHAI—p.18) is the main organization responsible for monitoring NSF standards. Other organizations are: National. Performance Framework and National Patient and User Survey.

Figure 6.1 Model for chronic disease care

The expert patient Most doctors acknowledge that many of their patients with chronic conditions know their own condition best. Expert patient programmes (or patient self-management programmes) utilize this fact to improve patient care. The aim is to promote effective partnerships in management of chronic disease by combining the expertise of patient and doctor (see Fig. 6.2). Chronic disease self-management programmes developed over the last 20y. These are a system of patient education and empowerment. As well as using health professionals, they use trained lay people with chronic illness as tutors. The 5 core self-management skills are:

  • Problem solving
  • Decision making
  • Resource utilization
  • Formation of a patient-professional partnership
  • Taking action

But none of these is in itself the key to effective self-management. The key is the change in the individual’s confidence and belief that they can take control over their disease and their life. Benefits include ↓ severity of all symptoms; ↓ severity of pain; improved life control and activity; improved resourcefulness and life satisfaction; enhanced doctor-patient relationship; ↓ use of health services. Common patient concerns

  • 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 your doctor(s) and other care providers
  • Talking about your illness with family and friends
  • Managing work, family, and social activities

Essential reading DOH (2001) The expert patient; a new approach to chronic disease management for the 21st century. http://www.dh.gov.uk

Figure 6.2 The patient–professional partnership

Pain control Pain is always subjective, so take it at face value in all patients. History Consider:

  • Site of pain: Where? Any radiation? Numbness where pain felt?
  • Onset: How long? How did it start? What started it? Change over time?
  • Character of pain: Type of pain—burning, shooting, stabbing, dull, etc.
  • Radiation: Does the pain go anywhere else?
  • Associated features
  • Timing/pattern: Is it worse at any time of day? Is it cyclical?
  • Exacerbating and relieving factors
  • Severity: Record, especially if pain is chronic and you want to measure change over time. Consider patient diary. Ask about:
    • Pain intensity e.g. none–mild–moderate–severe; rank on 1–10 scale
    • Record interference with sleep or usual activities
    • Pain relief e.g. none–slight–moderate–good–complete
  • Previous treatments tried and result

Acute pain Cause is usually obvious—amount of pain is not related to severity of cause. Remember, fear makes pain worse. Chronic pain >3–6mo.—7% adults in UK. Usually multifactorial. Be aware of 2° gain from pain if symptoms seem out of proportion (outstanding compensation claims are a significant factor in success of pain management). Set realistic targets—abolition of pain may be impossible (70% have pain despite analgesia). If analgesia is not helping, stop it. The aim is often rehabilitation with ↓ in distress/disability. A multidisciplinary approach is essential. Strategies for pain management

  • Prevention: e.g. wrist splints for carpal tunnel syndrome; analgesia prior to minor surgery.
  • Removal of cause: Treat medical causes of pain e.g. infection, ↓ blood sugar (diabetic neuropathy). Refer surgical causes for surgery if surgery is appropriate e.g. OA—joint replacement.
  • Pain-relieving drugs: Start with a single drug at low dose and step up dose or add another drug as needed—see Fig. 6.3. Especially in situations of acute pain, step down if pain diminishes (p. 174-5).
  • Physical therapies: Acupuncture (p.144), physiotherapy (p.153), or TENS (p.145).
  • Nerve blocks: Consider referral for epidural (low back pain), local nerve block, or sympathectomy (e.g. vascular rest pain).
  • Modification of emotional response: Psychotropic drugs e.g. anxiolytics, antidepressants.
  • Modification of behavioural response: e.g. back pain—consider referral.
Figure 6.3 WHO analgesics ladder

Neuropathic pain Sharp or burning pain. Typically does not respond well to ordinary analgesia. Tends to be associated with numbness around the area of pain and may be less troublesome when the patient is distracted.

  • Try antidepressants (e.g. amitriptyline, 10–25mg nocte increasing as needed every 2wk. to 75–150mg)—treatment should start to have an effect within 2wk.
  • If unsuccessful, consider anticonvulsants (e.g. gabapentin, carbamazepine, phenytoin, sodium valproate, or clonazepam) at standard anticonvulsant dosages.
  • Local treatments are sometimes helpful e.g. capsaicin cream.

Trigeminal neuralgia—p.599 Referral If unable to remove cause and unable to achieve adequate pain relief, consider referral to a specialist pain control clinic (or palliative care team if more appropriate). Essential reading Moore et al. (2003) Bandolier’s Little Book of Pain. OUP. ISBN: 0192632477 Further information The Oxford Pain Internet Site http://www.jr2.ox.ac.uk/bandolier/booth/painpag P.174
Pain-relieving drugs Paracetamol As effective a painkiller as ibuprofen. No anti-inflammatory effect but potent antipyretic. Drug of choice in OA where inflammation is absent. Side-effects are rare. Dose 1g qds. Overdose (>4g/24h.) can be fatal causing hepatic damage sometimes not apparent for 4–6d. Inadvertant overdosage is easy due to presence of paracetamol in most OTC cold preparations—refer to A&E. NSAIDs Anti-inflammatory, analgesic, antipyretic. Start at lowest recommended dose and don’t use >1 NSAID concurrently. 60% respond to any NSAID—for those who don’t another may work. Side-effects:

  • Gl side-effects: Common (50%) including Gl bleeds (¼ Gl bleeds in UK). ↑ with age. Risks are dose-related and vary between drugs.
    • For the elderly, those on steroids, or with past history of Gl ulceration or indigestion, protect the stomach with misoprostol or PPI.
    • Selective inhibitors of cyclo-oxygenase-2 (COX2) are equally effective and safer. Consider in high-risk patientsN at low risk of cardiovascular disease.COX2 inhibitors have NO effect on platelet aggregation; they have no benefit if used in patients on continuous low-dose aspirin; and there is no evidence combining a COX2 inhibitor with PPI/misoprostol gives extra stomach protection. Do not use for patients with a past history of cerebrovascular or ischaemic heart disease.
  • Other side-effects: Hypersensitivity reactions (5–10% asthmatics develop bronchospasm); fluid retention (relative contraindication in patients with ↑BP/cardiac failure); renal failure (rare—more common in patients with pre-existing renal disease); hepatic impairment (particularly diclofenac).

Topical NSAIDs Of proven benefit for acute and chronic conditions and can be as effective as oral preparations. They have lower incidence of Gl and other side-effects, though these still occur.

Table 6.2 Commonly used NSAIDs
Drug Dosage Features
Ibuprofen 1.2–1.8g/d. in Fewer side-effects than other NSAIDs.
3–4 divided doses Anti-inflammatory properties are weaker. Don’t use if inflammation is prominent e.g. gout.
Naproxen 0.5–1g/d. in 1–2 divided doses Good efficacy with a low incidence of side-effects.
Diclofenac 75–150mg/d. in 1–2 divided doses
Mefenamic acid 500mg tds Minor anti-inflammatory properties. Tends to be used for dysmenorrhoea (p.726).
Occasionally associated with diarrhoea and haemolytic anaemia—discontinue.
Meloxicam 7.5–15mg od Selective COX2 inhibitors. As effective as non-selective NSAIDs and share side-effects but risk of serious upper Gl events is lower. Only use if high risk of Gl side effectsN and low cardiovascular risk.
Celecoxib 200mg od or bd

Combination analgesics

  • Combining 2 analgesics with different mechanisms of action enables better pain control than using either drug alone at that dose.
  • Combinations have ↓ dose-related side-effects but the range of side-effects is ↑ (additive effects of 2 drugs).
  • In general practice, the most common combinations are aspirin or paracetamol with a mild opiate (e.g. co-codamol, co-dydramol). These combinations are no more effective than paracetamol alone but have more side-effects and are more dangerous in overdose.
  • Combinations using full-dose opiate (e.g. solpadol) are more effective than paracetamol alone but it is cheaper and more flexible if constituents are prescribed separately.

Opioids Chronic pain may not respond to an opiate. Give for a 2wk. trial and only continue if of proven benefit. Worries of tolerance/addiction are unfounded for patients with true opioid-sensitive pain. Use of morphine

  • Starting: Give clear instructions—starting dose 2.5mg or 5mg 4 hrly; ↓ starting dose if renal/hepatic failure. Regular administration and breakthrough top-ups as required. Start with short-acting morphine 4 hrly and slowly titrate up dose. Warn about side-effects. Driving—advise that when on regular stable dose, can drive.
  • Prevention of side-effects: Provide prophylactic laxatives to prevent constipation. Nausea (40%)—use antiemetic e.g. haloperidol 1.5–3mg nocte; usually resolves in <2wk. Subacute overdosage (slowly progressive somnolence and respiratory depression—common in patients with renal failure)—withhold drug for 1–2 doses, then reintroduce at 25% lower dose.
  • Titration: ↑ by 30–50% daily until pain is controlled/side-effects prevent further ↑. Give the same dose as is being used 4 hrly as prn dose for breakthrough pain. (If using slow-release preparation, calculate equivalent short-acting 4 hrly dose).
  • Maintenance: Once pain is controlled, consider long-acting preparation of equivalent dosage (e.g MST bd or MXL od). If dose ↑ is then necessary, use 1/3–½ dose increments. ↑ dose rather than frequency, as tablets are designed for od or bd dosing.
  • Other routes of administration: If po administration is impossible consider diamorphine syringe driver (1/3–½ dose oral morphine/24h.), rectal morphine, or a fentanyl patch:
    • Morphine salt 90mg/d. ξ fentanyl ‘25’ patch
    • Morphine salt 180mg/d. ξ fentanyl ‘50’ patch
    • Morphine salt 270mg/d. ξ fentanyl ‘75’ patch
    • Morphine salt 360mg/d. ξ fentanyl ‘100’ patch
  • Trouble shooting
    • Continuing pain and frequent prn doses—↑ regular dose.
    • Persisting side-effects (drowsiness, jerking, vomiting, confusion)—↓ dose.
    • Considerable pain despite marked side-effects—use alternative.

Rehabilitation ‘Use strengthens, disuse debilitates’ Hippocrates (460–357 BC) 13–14% of the population have some disability. This is increasing as populations age and people survive longer with disability. Most patients are best managed by a multidisciplinary team in their home environment (if practicable) with a problem-oriented approach. Good interdisciplinary communication and coordination is essential and many patients benefit from specialist rehabilitation services. Psychological and socio-cultural aspects are as important as medical aspects. Principles of rehabilitation

  • Use of assessments/measures: Central to management of any disability. Use validated measures accepted by all team members (e.g. Barthel index—p.628). Reassess regularly.
  • Teamwork: 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.
  • Goal-setting: Goals must be meaningful, challenging, but achievable. Use short- and long-term goals. Involve the patient ± carer(s). Regularly renew, review, and adapt.
  • Underlying approach to therapy: All approaches focus on modification of impairment and improvement in function within everyday activities. Patients derive benefit from therapy focused on the management of disability.
  • Intensity/duration of therapy: How much therapy is needed? Is there a minimum threshold below which there is no benefit at all? Studies on well organized services show it is rare for patients to receive >2h. therapy/d. No-one knows what is ideal.

Role of the GP Maintain an open door policy and encourage patients and carers to seek help for problems early. Try to become familiar with a patient’s disease, even if it is rare. It is impossible to plan care without knowledge of course and prognosis and an easy way to lose a patient’s confidence is if you appear ignorant of their condition. The GP of any patient receiving rehabilitation in the community is a team member and may be the key worker who coordinates care. Information alone can improve outcome. Consider:

  • Can physical symptoms be improved?
  • Can the psychological symptoms be improved (including self-esteem)?
  • Can functioning within the home be improved? (aids and adaptations within the home, extra help)?
  • Can functioning in the community be improved (mobility outside the home, work, social activities)?
  • Can the patient’s or carer’s financial state be improved?
  • Does the carer need more support?

If progress is slower than expected, or stalls, consider other medical problems (e.g. anaemia, hypothyroidism, dementia), a neurological event, depression, and communication problems (e.g. poor vision/hearing). Multidisciplinary working A multidisciplinary approach is ideal e.g.

  • DNs provide nursing care and equipment, advice on all aspects of nursing care, and teach carers how to do everyday tasks (e.g. emptying catheter bags, lifting). They are sources of information on local services and provide support for carers of patients on their caseload.
  • Health visitors for the elderly (where available) provide general support for patients/carers and have good local knowledge.
  • Community physiotherapists are invaluable sources of help, advice, and equipment for practical problems relating to mobility.
  • OTs can help patients and carers cope with difficulties in everyday living caused by disability by providing aids and appliances and arranging alterations; font of knowledge on ways to help with every day activities of living.
  • Speech therapists can help with communication problems.


  • Medical opinion: for clarification of diagnosis (e.g. if diagnosis is in doubt or patient has symptoms/signs incongruous with diagnosis).
  • Specialist rehabilitation services: new or deterioration in existing impairment, disability, or handicap or advances in management that warrant re-referral for specialist care.
  • Social services: for assessment of the home for modification, assessment to allow application for mobility aids or services to help the disabled person and/or carer to cope.
  • Voluntary organizations and self-help groups: useful sources of support for patients and carers.
  • Citizen’s Advice Bureau: for independent advice on benefits and services.
  • Disabled Living Foundation: for independent advice on equipment and appliances—see below

Common neurological rehabilitation problems p.626 Equipment and adaptations p.110 Driving p.202 Benefits p.98-115 Employment p.201 Carers p.178 Patient information and support Disabled Living Foundation: Advice about equipment and appliances Tel: 0845 130 9177 http://www.dlf.org.uk Age Concern: Wide range of information and factsheets Tel: information line 0800 00 99 66 http://www.ageconcern.org.uk Royal Association for Disability and Rehabitition (RADAR) Tel: 020 7250 3222 http://www.radar.org.uk Disablement Information and Advice Line (DIAL) Tel: 01302 310123 http://www.dialuk.info P.178
Care of informal carers In the UK there are 6 million informal carers who are vitally important to the well-being of disabled people in the community. Most are relatives or friends of the person being cared for. Many are elderly with health problems themselves. There is good evidence their health suffers as a result of caring—52% report treatment for a stress-related illness since becoming a carer and 51% report being physically injured as a result of caring. GPs and their primary care teams are often the 1st point of access for any help needed and 88% carers have seen their GP in the past 12mo. Carers see the GP as the professional most able to improve their lives, but few GPs have had any training about their problems and 71% carers believe their GPs are unaware of their needs. Physical help Record whether a patient is a carer in their notes.

  • Practical advice on nursing skills—ask DNs to review problems.
  • Advice on management—specialist nurses (Macmillan nurses, diabetic liaison nurses, etc.) provide special expertise.
  • Additional help—social services can provide home care. Voluntary organizations provide sitting services e.g. Marie Curie nurses, Crossroads schemes. Every carer has a right to ask for a full assessment of their needs by the social services.
  • Home modification—local authorities can arrange modifications. DNs have access to equipment needed for nursing. The Red Cross loans commodes, wheelchairs, etc.
  • Respite—hospitals, hospices, and local authorities provide day care (to give regular breaks each week) and respite care (for a week or more at a time).

Emotional support

  • Self-help carers groups—opportunity to share experiences with people in similar situations.
  • Always ask the carer how they are when visiting—even if they themselves are not your patient.
  • If the patient and/or carer have a religion, the clergy will often provide ongoing support.
  • Maintain good lines of communication—treat the carer as a team member. Make sure you inform both carer and patient fully. Make appointments for review. Don’t be short with a carer, patronizing, or impossible to contact.

Financial support Many patients who have carers are entitled to Attendance Allowance or Disability Living Allowance (p.107). If the patient is not expected to live >6mo. they are entitled to claim under Special Rules. This benefit is not means tested. Other benefits:

  • Low income—p.102–4.
  • Given up work to look after the patient—may be eligible for Carer’s Allowance—p.108.
  • Substantial modification to home—Council Tax may be payable at lower rate (consult local council).

Support organizations Carers UK http://www.carersonline.org.uk Tel: 020 7490 8818 Princess Royal Trust for Carers http://www.carers.org Tel: 020 7480 7788 Support organizations for the patient’s condition (e.g. Stroke Association—p.607) Department of Work and Pensions http://www.dwp.gov.uk Tel: Benefits Enquiry Line—0800 882200; 0800 243355 (minicom facility); 0800 441144 (for help with form completion) Citizen’s Advice Bureau http://www.adviceguide.org.uk Age Concern Tel: 0800 00 99 66 http://www.ageconcern.org.uk Help the Aged Tel: 0800 800 65 65 http://www.helptheaged.org.uk Counsel and Care Tel: 0845 300 7585 http://www.counselandcare.org.uk

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