Consensus Guidelines for the Management of
Insulin-Dependent (Type 1) Diabetes — Chapter 2

2. EMPOWERMENT, EDUCATION, SELF-CARE, and LIFESTYLE

2.1 Patient empowerment
2.2 Patient education
2.3 Self-monitoring and Self-management
2.4 Living with diabetes (employment, insurance, licences, travel)

IDDM CONSENSUS GUIDELINES Chapter 2 LIVING: Empowerment

2.1 Patient Empowerment

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A salient goal for diabetes care is to enable
each person with diabetes to lead
the health-care team involved 
in the management their diabetes.
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It is the right of each person with diabetes to:

1. have the right of choice in adopting elements of diabetes care
2. b. to express dissatisfaction and suggest change
3. c. to be a part of efforts to improve the services offered.

Empowerment implies being in command of ones life, and is a continuing, dynamic process.

Empowerment is an active process, acquired through education.

The elements of empowerment are:

1. knowledge
2. behavioural skills
3. self-responsibility

Empowerment should have the following objectives:

1. Improve self-confidence in gaining maximum benefit from the skills of the health-care team ( health-care team )
2. Ensuring earlier and more relaxed approaches for help when managing everyday problems
3. Gaining the best possible access to other aspects of diabetes health-care should the late complications arise

Empowerment of the patient depends on:

1. It being the active policy of the diabetes service
2. Support being available from diabetes associations
3. Availability and knowledge of diabetes publications and other information sources.

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It is the right of each person with diabetes
to become empowered to derive the maximum benefit
from the health care system.
It is the responsibility of the diabetes team 
to ensure that such empowerment occurs.
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1. Ensure that empowerment is a primary objective of patient education ( education )
2. Respond positively (not defensively) to requests for information and understanding
3. Provide all people with diabetes with a copy of the European Patients' Charter, or other similar national or local statement of rights and roles
4. Provide all people with diabetes with a copy of their diabetes health-care record, in the form of the International CareCard Diabetes or similar local or national record card
5. Discuss and interpret all examination findings and laboratory results with the patient (to whom they belong).

IDDM CONSENSUS GUIDELINES Chapter 2 LIVING: Empowerment

IDDM CONSENSUS GUIDELINES Chapter 2 LIVING: Education

2.2 Patient Education

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The tools of diabetes care can only be used
effectively and optimally when combined with
the process of patient education and with 
continuing evaluation of the outcomes of care
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The aim of patient education is to achieve effective self-management of diabetes while maximising quality of life.

To achieve this it is necessary to optimize:

1. motivation
2. attitudes to self-care
3. behaviours which interact with diabetes management
4. empowerment in handling health-care and other professionals.

The objectives of patient education are:

1. to ensure optimal and appropriate use of insulin therapy ( insulin )
2. to deal with the social and life-style consequences of insulin therapy
3. to be able to detect and manage the complications of therapy ( hypoglycaemia )
4. to be able to monitor the results of therapy and act appropriately on the results ( self-monitoring )
5. to manage effectively other therapies including nutrition and exercise ( diet ) ( exercise )
6. to enable appropriate self-management during intercurrent illness.
7. to be able to formulate and agree health-care targets and strategies for meeting them ( targets )
8. to use the professional members of the diabetes care team effectively ( team )
9. to understand and cope appropriately with the late tissue damage of diabetes ( late complications )
10. to make appropriate responses to unpredicted and new problems in diabetes care
11. to avoid self-destructive behaviours and deal adequately with stress

2.22 Provision of education

• Education should be integrated into regular clinical care. Every diabetes service should adopt its own curriculum and programme for patient education.
• Patient education requires adequately trained personnel, but otherwise only a minimum of resources. The diabetes team and its professional education are discussed in a separate section above.
• Every patient has special needs, and education needs to be individualized. For some groups (young people, pregnant women, the elderly) special provision may be necessary.
• Education is usefully organized into three sections:
  1. At and shortly after diagnosis: Here the aim is to provide the minimum skills to enable the patient to obtain control over their new situation. It should include: a. correct and supportive information on the nature and outcomes of diabetes; b. self-injection, self-monitoring, hypoglycaemia, dietary carbohydrate distribution ( insulin ) ( self-monitoring ) ( hypoglycaemia ) ( diet ).
  2. In the months following diagnosis: This is best given on one to one basis. Specific topics should include those covered previously but additionally: a. coping with illness, targets of insulin therapy, healthy eating; b. complications of diabetes, associated risk factors, foot care; c. employment or schooling, insurance, driving and travel; d. pregnancy, genetic counselling, contraception ( targets ) ( late complications ) ( foot care ) ( social issues ) ( pregnancy ) ( contraception )
  3. In the long term: Periodic reinforcement of (1) and (2) is best achieved after annual evaluation of patient education (see below); Group education is a powerful approach to uncovering problems and providing solutions and behavioural change through peer example; this approach is usefully followed for adolescents.

The success of patient education should be formally evaluated at a minimum of every 1 to 2 years. Such evaluation should include:

• Traditional biomedical measures such as changes in body weight, glycated haemoglobin, and serum triglyceride concentration ( targets )
• Evidence of appropriate behaviours such as membership of diabetes associations, appropriate footwear, injection sites in good condition
• Assessment of life-style, emotional adjustment, and perceptions of barriers to activities and self-care from diabetes
• Perceptions of desired short-term goals (control, weight), and long-term vulnerability (to late tissue damage)
• Review of diabetes skills (monitoring, injection, hypoglycaemia management, food identification)
• Knowledge: Knowledge questionnaires are of little help in the well organized diabetes service; they may be more appropriately used to demonstrate deficiencies of care where resources or organization are lacking
• Well-being and health profile assessments specifically for diabetes are becoming available; non-specific measures are not recommended.

IDDM CONSENSUS GUIDELINES Chapter 2 LIVING: Education

IDDM CONSENSUS GUIDELINES Chapter 2 LIVING: Monitoring

2.3 Self-monitoring and Self-management

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It is entirely appropriate for the adequately educated
patient to make informed changes in insulin dose
adjustment, dietary intake, and exercise.
All people with diabetes should be given the opportunity 
to practice such management through adequate education.
People with diabetes should be made aware of where
they can obtain 24-h support for advice on diabetes
self-management within their locality.
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Self-monitoring fulfils a number of important roles in diabetes self-care:

• As the effects of insulin injections and life-style are erratic in their impact on metabolic control, it can provide reassurance and the information required for appropriate acute changes to therapy
• Diurnal profiles provide the basis for adjustment of insulin regimes when blood glucose control is not meeting targets
• Measurement of blood glucose responses provide a personal and powerful educational tool to understanding the effects of behavioural changes
• In new or stressful situations (including illness) monitoring provides the basis of adjustments to insulin dose or the seeking of professional help ( insulin ).

• Self monitoring of blood glucose is recommended for all IDDM patients.
• Any form of blood glucose monitoring technique is acceptable providing it has been shown to be reliable and there is adequate quality control. Meters, with or without memories, may be useful and preferred by some patients, but are not essential.
• The patient should receive appropriate training and regular review of technique.
• Results should be written down when the tests are done to provide:
  1. a cumulative record of blood glucose levels
  2. a basis for day to day changes in therapy
  3. the early detection of special or emergency situations.
• Different patterns of testing may be required to suit individual patient needs:
  1. Once daily testing is the minimal acceptable frequency when tests are performed at different times of day
  2. One or two four-point profiles a week may be more informative in some patients, but should reflect different types of daily activity (for example at weekends)
  3. Many patients choose to monitor more frequently, and achieve improved quality of life and blood glucose control as a result of flexibility in insulin doses and other aspects of life-style. Resources should be made available for such patients.
  4. More frequent monitoring (four or more times a day) may be desirable especially during illness or life-style changes, after alteration in insulin dose, or before conception and during pregnancy.
  5. Night-time monitoring (0200-0400 h) can be useful if unrecognized night-time hypoglycaemia is suspected contraception ( hypoglycaemia ).
• During the day useful routine test times are preprandially and 1½ h after meals.
• Bed-time tests can be very helpful to patients prone to nocturnal hypoglycaemia.
• Evaluation of the reliability of self-test results should include assessment of self-test technique, comparison with acute results obtained at consultation, consistency with the results of glycated haemoglobin estimation, and review of the quality of self-test record diaries. Unreliable records suggest a failure of patient education by the diabetes health-care team.
• Caution should be exercised in the interpretation of values obtained at the extremes of the blood glucose range, particularly at low levels. Other ambient factors (temperature, humidity, haematocrit) may influence readings in some situations.
• Glucose monitoring systems are available for patients with visual impairment, assisting the appropriate placement of a drop of blood, and communication of the result. They should be provided to these patients.
• Urinalysis for glucose should be used where blood glucose monitoring is not possible or the patient does not wish to continue with it.
• Urinalysis for ketones is important if blood glucose concentrations are persistently high, in acute illness, or if the patient is vomiting or pyrexial contraception ( targets ). Urine ketone testing skills may need periodic review. More intensive approaches to therapy do not decrease the need for urine ketone monitoring.

IDDM CONSENSUS GUIDELINES Chapter 2 LIVING: Monitoring

IDDM CONSENSUS GUIDELINES Chapter 2 LIVING: Social issues

2.4 Living with Diabetes

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The diabetes health-care team should be
the patient's advisor, mentor, and advocate
in all aspects of day to day living with diabetes.
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The following aspects may not need to be covered for every patient, but must be provided where appropriate.

2.41 Employment

General guidelines of natural justice apply both to patient and society so that the rights and safety of all are respected. Patients should not be discriminated against solely on the basis of diabetes. Employment in certain areas may reasonably be denied to people with diabetes, for example in transport or diving. However, people with IDDM often develop self-management skills not found in their peers, and as a result do not work less efficiently or require more sick time despite their diabetes.

• The responsible specialist should provide appropriate advice in regard of each individual.
• Decisions should be individualized to take account of differences in diabetes control.
• People developing IDDM while in a high-risk job should be individually assessed regarding their future employment in the same organization.
• Appropriate counselling should be given to those unable to find the position of their choice in the police force, armed forces, or similar public service bodies.
• The varying physiological requirements of shift work can usually be managed by careful advice in regard to diabetes care. Considerate employer co-operation should be provided.

2.42 Insurance

• People with IDDM should not suffer discrimination based on outdated actuarial data.
• The health-care team should be aware of where appropriate and up-to-date premiums can be obtained (often through diabetes associations).
• Physicians should co-operate in providing advice to patients wishing to enter into insurance contracts.

2.43 Driving licences

• There should not be any general limitation on granting driving licences to people with IDDM.
• Individuals with hypoglycaemia unawareness should be assessed on the basis of individual experience of hypoglycaemia and self-management.
• Physicians should provide rapid and appropriate reports on request.
• Some restrictions on the granting of commercial licences may be justified. In some cases individual assessment should be made. Employers are encouraged to exercise due consideration in finding alternative employment where licences are lost on developing diabetes.

2.44 Provision of equipment for patient self-care

• It is desirable that the basic needs including insulin, syringes, and monitoring equipment should be provided free to all people with diabetes ( self-monitoring ).

• The diagnosis of diabetes frequently causes some degree of shock to the patient and family.
• Counselling may be required and should be provided by all appropriately skilled members of the diabetes care team.
• Appropriate education (see above) can often alleviate some of the concerns underlying the diagnosis of diabetes.

• Before travelling patients should be advised by their local diabetes care team on their needs and requirements, including insulin dosage during travelling, monitoring equipment, syringes.
• Special problems in visited countries including new health risks and different concentrations of insulin should be addressed.
• Written details of a patient's condition should be provided where appropriate, and should include contact telephone numbers of the care team.
• Valid travel insurance should always be advised.

IDDM CONSENSUS GUIDELINES Chapter 2 LIVING: Social issues