Patient Education and Counseling 26 (1995) 209-213

Diabetes service management training and the need for a patient perspective: a IO-year evolution of training

strategies and goals

Urban Rosenqvist ’

Department of International Health and Social Medicine, Division of Social Medicine, Karolinska Institute, S- 17283 Sundyberg, Sweden

Abstract

In 1977, the Swedish National Board of Health and Welfare published guidelines for comprehensive care of patients with diabetes. The Stockholm County (1.6 million inhabitants) responded and opened a Diabetes Education and Training Centre, LUCD, in 1979. The goal was to reduce the impact of long-term complications. The centre should translate available knowledge about diabetes care into clinical practice, promoting a shift of patients and resources to the primary health care sector. Follow-up studies and new knowledge have changed the short-term training strategies; the long-term goal has remained unchanged. Current work is concentrated on training of staff, improving methods to support better patient learning, aiding organisational changes, and supporting large-scale interventions aimed at both patients, staff and the public. The patient can realize the goals. Knowledge and demands expressed by persons with diabetes are necessary for improvements of diabetes care. The skilled patient is also a guarantee for continuity of care. Regular follow-up of diabetes services was an important impetus for progressive change of short-term training strategies.

Keywords: Diabetes; Control program; Training; Outcome

1. Introduction

Patients with diabetes should have a better future if they receive adequate patient education and proper care. Translating clinical research findings into full-scale practice has proved

’ Tel.: + 468 6290500; Fax: + 468 986367.

difficult. Medical care programs emerged to solve this problem [l]. In the field of diabetes, attempts were made to standardise care, shifting patients and resources to the primary health care sector. The Stockholm diabetes control program started in 1979. Guidelines for diabetes care, published by the National Board of Health and Welfare in 1977, constituted the impetus [2]. The aim of this paper is to review the development of the Stock- holm program and the rationale behind the evolu-

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210 I/. Rosenqvisr / Patient Educ. Couns. 26 (1995) 209-213

tion of training strategies. When we look back over the past 10 years, a major finding is the cyclic transitions between practice, evaluation and change. Over time, the program went through 5 cycles. Gradually, the focus of activities shifted from one that emphasised the specialist’s knowl- edge, to one that brought the patient’s under- standing into prominence. With time, we came to utilise several different channels for intervention.

2. Cyclic transitions between practice, evaluation and change

2.1. Cycle 1 - a top-down approach Initially it was felt that the major obstacle to

quality care was that physicians and nurses in the primary health care sector did not know enough about diabetes. Therefore, a 2-week training course for primary health care teams started in 1980. The first week consisted of lectures and demonstrations. During the second week, staff attended the diabetes service at their referral hos- pital. At follow-up 4 years later, the majority (86%) of the 104 health care centres had sent staff to the teaching course. Only a minority of centres fully adopted the principles taught [3]. Patients from the 10 best centres had made important gains when compared with patients from 10 cen- tres selected at random. They knew more about food, tested more often for glucose, and fewer patients needed medication to lower blood glu- cose. However, they had the same HbAlc-values as patients from the less well-organised primary health care centres.

Staff in the best centres spent twice the time attending staff meetings and continuing medical education [3]. We identified many obstacles to change of current practices. The most important ones were: (1) lack of knowledge of diabetes care, (2) insufficient co-operation between staff mem- bers, (3) poor relations with specialists, and (4) absence of guidelines for diabetes care [3]. From these findings, we realised the importance of in- volving more employees in the change process and let them locate problems and possibilities for change. At that time, customer-orientated changes were successfully implemented in other services, e.g. The Scandinavian Airlines System. This led us

to analyse the whole diabetes service system more deeply by conceptual modelling [4]. Our work resulted in a new strategy with the slogan ‘Good care on your terms.’

2.2. Cycle 2 - A bottom-up approach We launched the new training strategy in 1985.

Local primary health care centre staff, patients and administrators built conceptual models to analyse available services, locate problems and come up with suggestions for change [5]. The patients made important contributions during this work and they felt free to express themselves. Subsequently, staff trained for 2 weeks as before. In addition, we provided tutor ship in the work- place. We evaluated the impact of the new training strategy in a randomised clinical trial involving 34 primary health care centres [4- 111. After 18 months, many (70%) of the plans for change were in place and seemed to be stable over time [lo]. The number of referrals of patients for eye exam- ination at regular intervals had increased. Metabolic control was the same in both groups. But, there was a significant reduction in middle age female excess mortality after 4 years [l 11.

The absence of any impact on the metabolic control raise two alternative interpretations. Ei- ther the follow-up occurred too soon, or staff did not use effective teaching methods [4]. Favouring the latter interpretation, we began looking for new ways to make the primary health care staff more effective during the consultations. This im- plied focusing their teaching skills. Subsequently, we started a training program based on recent research in the field of education [12]. Students learn best when they get to understand the mean- ing of the topic instead of acquiring a more shallow memory of facts. The conception of the lived world is subjective and another person can only understand it from the person’s narrative. According to this theory, the patient’s concep- tions of phenomena in the lived world will deter- mine how he acts in response to them.

2.3. Cycle 3 - promoting the patient’s understanding

The aim then was to train staff in such a way that they would be able to make the patient reflect

U. Rosenqvist 1 Patient Educ. Cows. 26 (1995) 209-213 211

on his subjective experiences of the disease. We wanted him to identify knowledge gaps that would block him from handling it well and to search for new experiential knowledge. Staff were trained to use the interview as an instrument to elicit the patient’s conceptions of different phe- nomena, e.g. how to control blood glucose. If performed right in the right way, the interview could also make the patient realise that his con- ception of the lived world did not fit with his experiences and, in turn, make him ask questions or produce a new, qualitatively different concep- tion. Thus, new behaviour might ensue because of the interview. The training course, Diabeto- 1ogicumQ incorporates video training of the staff to improve interview technique. In addition, there is a set of texts to illustrate different patient conceptions. Finally, the staff learns how to identify the patient’s conception and formulate a plan to develop it to a more functional one [12]. Today, more than 70 physicians and nurses have been trained. At follow-up, the majority (70%) had realised that they had to support the patient’s reflection and learning [13]. The advan- tage of this approach in patient education was also apparent in a recent study of immigrant Arabic patients and their problems with diabetes in Sweden [14].

2.4. Cycle 4 - promotion of quality control at the clinical level

To further strengthen the training in patient education, LUCD took on the diabetes services at one primary health care centre in 1990- 1993. In this way we could train staff in practical work, use video recordings to monitor the consultations, carry out rounds to share information, test the computer in clinical practice, and establish follow- up routines. An example is the annual survey of diabetes care organisation and patient outcome. We also used a training kitchen with 4 stoves to teach patients and staff what to cook and eat, and how to test for blood glucose concentrations.

Our annual reviews of patient outcomes were performed in order to monitor procedures and outcomes that are critical for reaching the goals of the St. Vincent Declaration. Tables 1 and 2 show a survey of 19 primary health care centres in one

administrative area of the Stockholm County. The criteria for good diabetes care mainly addresses the organisational aspects (Table 1). Only 24% of the centres had a forum for discussing patients with diabetes and a nurse that could modify the patient’s medication. The numbers indicate that quality diabetes services are probably available only in a minority of primary health care centres. Consequently, patient outcomes varied between centres, as indicated by the wide range of mini- mum and maximum values (Table 2). In some centres, many patients did not have access to home blood glucose measurements. Similarly, some centres had not employed the eye-screening service and many patients had not been properly examined for diabetic eye disease. Medical super- visors used the results in Tables 1 and 2 to revise the care for patients with diabetes. One result will be increased use of the readily available mobile eye-screening service described below.

To promote better coverage for diabetes eye disease screening, we organised an ‘eye-cam- paign’. First, in the spring of 1989, a letter went to all persons hospitalised in 1972-1988 with diabetes according to the Stockholm County in- patient register. These 13 400 letters advised pa- tients to book an eye examination if they had not been examined during the previous 2-year period. At follow-up 2 years later, one third of the pa- tients with diabetes in the population had received

Table I Determination of the quality of diabetes care organisation using 6 criteria in 1993

Criteria

Check-list is used Written guidelines for diabetes care

are in use

Percentage (%)

88 71

One or more of the nurses has special responsibility for patients with DM

A register of patients with DM exists There is a forum for discussions of

patients with DM

65

59 24

The nurse may modify anti-diabetic medication regime

24

Percentage of 17 out of 19 primary health care centres in one of Stockholm’s 6 health areas. DM, diabetes mellitus.

212 U. Rosenqvist /Patient Educ. Couns. 26 (1995) 209-213

Table 2 Patient’s lifestyle and treatment outcome as stated in the patient’s record

Percentage (%)

Mean Min Max

HbAlc ( 5 ref value + 1%) Good 40 20 70 HbAlc ( I ref value + 2%) Acceptable 16 10 21 HbAlc ( < ref value + 2%) Not acceptable 27 10 42

Not known 17 Overweight (BMI > 25) 39 10 80 Hypertension patients ~40 years 1 0 2 Hypertension patients 2 40 years 20 7 34 Microalbuminuria 12 2 32 Ulcer on foot 4 0 9 Smokers 16 6 31 Does not perform home blood glucose tests 27 2 62 Not screened within 2 for disease years eye 11 0 26 Number of patients with DM at one health centre 112 44 280

Data from ah 19 primary health care centres in 1 of Stockholm’s 6 health areas in 1993. Results obtained from 2134 patient records. Percentage (%) of patients at 1 centre. The values were weighted for the size of the patient population at each centre. DM, diabetes mellitus.

the letter [15]. Every second person who received it contacted one of the ophthalmology depart- ments requesting an appointment. The second part of the eye campaign consists of a mobile ocular fundus photography service that began in the autumn of 1990. In this way, the GP can have all his patients examined at the primary health care centre. Today, after 3.5 years, we have screened > 6000 patients [ 161. To assess the effect of the eye-campaign, we counted referrals to Stockholm County low vision rehabilitation cen- tres of patients referred with a visual acuity of the best eye of I 201200. A surge of new patients appeared after the eye-campaign letter campaign. Later, the incidence decreased. The 1989-1993 rate is one third less than the 1984-1988 level.

The results of the eye campaign definitely shows how structural changes can supplement staff train- ing. A monitoring system was easy to establish using already available data. Patients will act forcefully if they have adequate knowledge. The eye-campaign letter was an inexpensive way to mobilise 6000-7000 patients for eye examina- tions. In subsequent photographic screening, about 4% needed laser photocoagulation because

of vision-threatening diabetes eye disease [16]. We estimate that the campaign prevented new blind- ness in 30-40 patients in 1989-1990. The cost of the mailings was $10 each.

2.5. Cycle 5 - mass education In 1991, the National Corporation of Swedish

Pharmacies ran a one-year nation-wide diabetes campaign, to improve services for patients and enhance public awareness. The rationale behind this was new medical evidence showing that good metabolic control might reduce the burden of late complications [17]. During the campaign, phar- macies sold printed material and organised local activities. In addition > 6000 patients pointed out problems with their diabetes services in a ques- tionnaire from the local health care staff. At follow-up, 26% of the general population had noted the campaign and 10% had obtained printed information on diabetes [18]. Sales of home blood glucose tests increased. The preva- lence of patients with known diabetes showed a tendency to increase. The campaign cost was 0.5% of the sales to patients with diabetes in Sweden in 1 year.

U. Rosenqvist / Patient Educ. Couns. 26 (1995) 209-213 213

3. Conclusion

Ten years of diabetes service management train- ing evolution brought several valuable experiences that might be of help to similar programmes. Traditional education of staff was not enough to achieve metabolic results at the patient level. We realised that it is the patient who has to carry out all the day-to-day measures that are essential to ensure that the diabetes program meets its goal. We therefore need to learn more of the patient’s understanding of the disease and how to handle it in the health care system. Hence, staff must find out how patients achieve competence in handling their disease and how best to support them in this learning process. Some aspects of the care, i.e. the frequency of eye examinations, can be improved by more effective organisation and increased pa- tient demand. Thus, a strong, knowledgeable pa- tient is an investment that will pay off long-term in better outcomes and reduced costs. The field of diabetes care is a field with many powerful actors [19]. The shift of LUCD’s focus, from a specialist approach via close support of the GP and finally the patient directly, has meant increased power and autonomy for patients. Some actors might have perceived this as a threat. Eventually, this reorientation of the LUCD program was checked as hospital-based diabetologists regained control of operations in November 1993.

Acknowledgements

This study was supported by a grant from the Swedish Medical Research Council (06615).

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