Differences in adaptation to diabetes between insulin dependent and non-insulin-dependent patients: Implications for patient education

Patient Education and Counseling, 8 (1986) 39-50 Elsevier Scientific Publishers Ireland Ltd.

39

DIFFERENCES IN ADAPTATION TO DIABETES BETWEEN DEPENDENT AND NON-INSULIN-DEPENDENT PATIENTS: IMPLICATIONS FOR PATIENT EDUCATION

INSULIN-

JEAN L. JENNY School of Nursing, Faculty of Health Sciences, Ottawa, Ontario KlH 8M5 (Canada)

University

of Ottawa,

451 Smyth

Road,

(Received June 12th, 1985) (Revision received October 29th, 1985) (Accepted November llth, 1985)

ABSTRACT

Differences in the expression of disease in individuals affect patients’ adaptive behaviors and vary their needs for self-care assistance. This survey compared self-report responses of two groups of ambulatory diabetic clinic patients (N = 246) on 12 parameters of adaptation suggested by the literature. Responses show the insulin-dependent diabetes (IDD) group to be younger, to have longer disease duration, poorer diabetic control, more diabetic instruction, and to be more compliant with their regime. IDD subjects perceived greater benefits of all aspects of self-care except for diet and exercise which were more valued by non-insulin-dependent diabetes (NIDD) subjects. IDD subjects also showed increased concerns and more social support. Detailed comparisons revealed different physical and functional problems in the groups, and differing perceptions of barriers to optimum self-care. For both groups, diet and exercise present the most problems. Findings suggest some recommendations for patient educators and the need for further exploration of disease severity as a factor affecting patients’ learning needs. Key words:

Diabetes

- Disease severity

- Compliance

- Patient adaptation

Abbreviations: FPG, fasting plasma glucose; HBM, Health Belief Model; IDD, insulindependent diabetes; NIDD, non-insulin-dependent diabetes. 073%3991/86/$03.50 0 1986 Elsevier Scientific Publishers Ireland Ltd. Printed and Published in Ireland

40 INTRODUCTION

Subjective experience of illness is the focus of patient teaching, and is acknowledged by the educational principle of tailoring programs to meet patients’ specific learning needs. This has led to the need to identify subgroups of chronic disease patients who may benefit from different kinds or amounts of educational and supportive services [ 11. The most common indicator of learning needs is the type of disease with which the patient must cope. However, variations in the expression of disease in individuals often make the central problem of adaptation quite different. Diabetes is a heterogenous disorder with two major types of manifestation, NIDD, and IDD. Metabolically, both represent a deficit of insulin utilization; the degree of deficit is more marked in IDD than NIDD. Few studies have examined whether the type of diabetes affects patients’ pyschosocial or behavioral adaptive responses, although the physical effects of both types are well documented. The need for knowledge of adaptation specific for each group has been noted in the literature. A review of psychological factors in diabetes management notes that although 98% of those with diabetes are over 16, little is known of adult reactions to diabetes and its impact on daily activities [ 21. A critique of studies of diabetes and family effects observes that with few exceptions, researchers have consistently failed to consider the unique disease manifestations in sample subjects [ 31. One study of diabetes management in an indigent urban sample concluded that the type of diabetes the client had should be given consideration in diabetes teaching and management programs [ 41. The two types of diabetes are differentiated by therapies, age of onset, etiology, and prognosis, but share the same aim of treatment, normoglycemia. IDD is considered to be the more serious since it reflects the greater insulin deficit, generally starts at an earlier age, and affects the body for a longer duration. The single most important characteristic enabling patients to achieve satisfactory diabetic regulation is the ability to secrete and release some endogenous insulin to supply at least part of their needs [5]. Thus patients receiving exogenous insulin are more severely afflicted and have a different set of circumstances affecting their continual struggle for regulation. This study examines differences in patients’ adaptation to diabetes, by comparing the responses of two samples of patients with NIDD or IDD on 12 parameters of adaptation. Differences demonstrated could help tailor program content to the two types of patients. Conceptual

framework

for adaptation

An assumption of this study is that patients’ adaptation is greatly enhanced if their self-care closely incorporates the prescribed therapeutic regime, so measures of adaptation include both behavioral and clinical indicators. A major clinical goal in diabetes treatment is euglycemia, thus blood sugar level represents an important clinical indicator of adaptation. Since glycemia can be affected by personal behavior related to regime

41

adoption, the extensive compliance literature was reviewed to identify variables affecting compliance behavior. In a review of behavioral aspects of diabetes management, Watts identified complexity of the regime, patient beliefs about the disease and its treatment, knowledge of the treatment and its implementation, and close monitoring and supervision of the patient as factors affecting compliance [6]. An extensively researched set of variables is contained within the Health Belief Model (HBM). It suggests that people will not voluntarily adopt prescribed measures unless they possess minimal levels of relevant health knowledge and motivation, view themselves as potentially vulnerable and the condition threatening, are convinced of the value of the interventions, and see few difficulties in undertaking the recommended action [ 71. The reality is acknowledged that these constructs are adequate starting points, but certainly do not encompass a complete understanding of human behavior. A value of the model is the extent to which it has been utilized and the amount of published research available with which to compare results. Additional variables suggested by Williams and co-workers [8] to affect the level of diabetes control include patient knowledge and instruction, continuing patient support, patient satisfaction with physician, size of household and the number of additional problems reported by the patient. Type and severity of disease differentiate IDD and NIDD patients. Disease factors reported in the literature to affect patient adaptation include illness severity [ 8-101, age of onset [ 1,8] , length of illness [ll-151, complexity of treatment [ 1,16-181, and level of control [ 191. From the compliance literature a model of diabetes adaptation was constructed, and is described in detail elsewhere [20]. The concepts of the model used for this study include: Belief in diagnosis, perception of disease severity, benefits of the regime, instruction, health motivation, social support, satisfaction with clinicians, health and family problems, barriers to regime adoption, special disease concerns, self-reported compliance, and level of disease control. Additional variables observed were patient age, age of onset of diabetes, amount of formal diabetes instruction received, number in household, type of medication if any, and marital status. A copy of the instrument is available from the author upon request. METHOD

Subjects and setting The study was conducted in a regional diabetic outpatient clinic located in a large, university-affiliated teaching hospital. Patients were accepted into the study if they were current members of the clinic, over age 16, had been following treatment for at least 6 months, and were able to read and write English sufficiently to complete the testing instrument. The sample consisted of 246 adult diabetics, from a total of roughly 3,000 current files, ranging in age from 16 to 88 years of age. The average age was 54, with 73% of the sample over 45 years of age. Average age of

42

onset of diabetes was 45 and the mean number of years diagnosed was 9. Men comprised 48% of the sample, 56% were insulin-dependent (IDD, N = 138), 10% took no medication (N = 26), and 34% used oral hypoglycemic agents (N = 82). Subjects were categorized as IDD if they were prescribed insulin; the rest of the sample comprised the NIDD group (N = 108). Patients saw the same physician at each visit, and completed the selfreport questionnarie during a clinic visit. Data collection occurred over a period of 5 weeks for 14 days, and was done over rotating days of the week to obtain a representative sample of physician clients. All patients attending the clinic on the data collection days were invited to participate. Twenty-seven percent of the available patients did not contribute to the sample for a variety of reasons, including state of health, disinclination, or they had left the clinic before contact with the investigator. All subjects were advised of the study objectives and signed a consent form. Since no information was available to demonstrate representativeness of the sample to the parent clinic population, the data represent an informal survey rather than a controlled study. Instrument and data analysis Data were collected using an original lo-page self-report questionnaire. The majority of questions used a 5-point Likert scale of graduated agreement to disagreement with the question, e.g. ‘Does what you were told satisfactorily explain your health problem to you?’ Answers ranged from Strongly, Moderately or Somewhat Agree to Moderately or Strongly Disagree. A few questions could be answered with Yes, No or I don’t know. Items were checked for face validity by a panel of four clinicians and the hospital research committee. Items were matched to the theoretical model constructs which each purported to sample. Those not correctly matched were dropped. Questionnaire items were combined on the basis of manifest content to construct 13 index measures for the model elements. An index score was derived by summing its item scores. Indices did not contain the same number of questions or the same total score. The questionnaire was pilot-tested on 35 clinic subjects. Coefficients of correlation obtained between index scores verified the independence of each index since only two of the twelve were higher than 0.3 [21]. Indices were subjected to a test of internal reliability (Cronbach’s alpha) and a mean instrument reliability of 0.63 was obtained, with scores ranging from 0.30 to 0.82. Demographic and clinical descriptors on the questionnaires were verified by checking the information with that on each patient’s chart. No discrepancies were found. Data were coded and computer analyzed using selected programs from the Statistical Package for the Social Sciences [ 221. FINDINGS

AND DISCUSSION

Group characteristics Table I summarizes

the clinical characteristics

of the groups. The severity

43 TABLE

I

CHARACTERISTICS

OF GROUPS IDD (N = 138)

Present age Age of onset Duration of disease Fasting plasma glucose (FPG)

NIDD (N = 108)

j7

S.D.

Range

x

S.D.

Range

49 38 11 194

18.7 19.7 7.1 59.4

16-88 2-76 1-31 42-352

62 55 6 166

10.6 10.9 5.0 32.9

34-82 20-77 l-41 87-296

N

%

N

%

64 74

46 54

54 54

50 50

29 69 40

21 50 29

9

74 25

8 69 23

31 50 57

22 36 42

17 50 41

16 46 38

52 31 31 7 17

38 22 22 5 12

40 22 33 3

37 20 31 3 9

43 49 44 2

24 36 32

38 41

1

41 44 18 5

31 36 63 8

22 26 46 6

31 40 29 8

29

(mg/dI)

Sex Male Female

Status Single Married Other No. in household Alone Couple More than three

Income Under $15,000 $15,000-$24,900 $25,000-$49,000 Over $50,000 No response

Years of education 9 or less 12 University No response

10

17 4

Teaching about diabetes None 1 day 4 or more days No response

37 27 7

of the disease in the IDD group is underlined by the means. Its current age is 13 years younger than that of the NIDD group, the age of onset is 17 years younger and the duration of the disease almost twice as long. The mean FPG is significantly higher, and encompasses a much broader range of values. The demographic characteristics, show that the IDD group, perhaps consistent with its younger age, contained more singles, fewer married couples and more subjects in larger households. Of this group, more were university educated and claimed more diabetes-related teaching.

44

This reflects the findings of Lane and Evans [l] and Williams and coworkers, [ 81 who found that those with early onset of disease, consistent with IDD, had the greatest knowledge of the disease. Williams hypothesized that greater disease severity stimulated the patients to try to gain some measure of cognitive control through knowledge, and also that greater difficulty experienced by the IDD group led to increased clinical contacts and thus more knowledge of the disorder. Over one-fifth of each group reported no teaching beyond that received from their physician, although two different teaching programs of 1 day and 4 days are available in the clinic with physician referral. Health perception The leading health problem reported by the IDD group was impaired circulation (28%) and for the NIDD hypertension was most prominent (45%). Arthritis and nerves were each reported by a quarter of the groups. Since episodes of depression and anxiety both accompany most states of deteriorating health, and emotional lability results from repeated hypoglycemic episodes, it is likely that nerves represent emotional difficulties rather than the neuropathies which can result from diabetes. Viney and Westbrook [lo] found greater physical and functional disability in patients was associated with significantly more depression, directly expressed anger, few good feelings, and anxiety. Impaired eyesight was the most common functional problem reported by both groups with a higher proportion (41%) in the IDD. Hearing impairment affected one-quarter of the NIDD and walking difficulties were reported almost equally by both groups. These problems have significance for the patient educator, since they can affect patients’ learning abilities and access to class. Of the total sample, 59% reported some functional problem and 75% claimed some other health problem. The IDD group claimed 10% more functional problems, and the NIDD group 3% more health problems, possibly accounted for by their older age. Responding to how much these difficulties interfered with diabetes self-care, 43% of the sample indicated some interference, with the IDD mean score indicating slightly stronger interference. Possibly this reflects their greater proportion of visual problems and more complex treatment, i.e. need for insulin injections. Index scores Table II shows a comparison of responses between the two groups on aspects of adaptation, As measured by the Student’s t-test, significant (P < 0.05) differences occured in five of the elements: Instruction received, perceived regime benefits, social support, special concerns, and reported compliance to the regime. In each case, the IDD group scored higher, suggesting that increased disease severity is associated with improved compliance, increased number of concerns, more instruction, sharpened perception of regimen benefits, and more social support. Viney and Westbrook [lo] also related greater disability to increased emotional concerns. The

45 TABLE

II

COMPARISON

OF SCALE

SCORES Possible score total

Scale

Belief in diagnosis Perceived severity Instruction Regimen benefits Satisfaction with clinicians Social support Health motivation Health problems

(10) (17) (30) (25) (16) (15) (24) (15)

Family problems Barriers Special concerns Compliance Fasting plasma glucose

(8) (12) (32) (30) (FPG)

IDD (K = 138)

NIDD

x

X

(N = 108)

Z-tailed probability

S.D. 8.99 13.96 24.75 21.13 14.46 6.811 18.66 3.75

1.48 1.91 8.82 23.71 193.44

S.D.

1.88 2.74 3.30 3.40 2.27 2.67 4.59 3.45

8.72 13.39 22.17 19.41 14.99 6.17 18.83

1.85 2.43 7.65 3.62 59.23

3.57

1.99 3.33 4.33 3.39 2.15 2.15 4.95 3.10

0.300 0.150 0.001 0.001 0.060 0.037 0.778 0.665

1.42 1.74 6.83 21.86 166.54

1.91 1.92 6.34 3.89 48.85

0.800 0.552 0.028 0.001 0.001

younger age of this group might account for more family ties and larger groups of friends, thus strengthening their social support. The NIDD group claimed greater satisfaction with care, which is consistent with results reported by Linn and co-workers [9] who found that increased disease severity was the best predictor of dissatisfaction with care. It also claimed slightly more health motivation but scored lower on all other indices. There was a significant difference in the groups’ fasting plasma glucose (FPG), with the NIDD group in better control, consistent with the less severe condition and the findings of Williams and others [8] who equated better control with disease onset at an older age. However the older mean age of this sample would tend to elevate the FPG level.

TABLE

III

COMPLIANCE Aspect

Medication Diet Exercise Testing Footcare Balancing Identification

WITH REGIME IDD (N = 138)

NIDD (N = 108)

%

%

100.0 75.0 72.5 57.5 80.0 75.0 82.5

95.0 77.5 65.0 42.5 77.5 67.5 60.0

26

91

17 18 12 13 5

Difficulty

68

7 4 17 15 10 3 2 3 0 0 3 2 2 0

Time

BY TYPE OF DIABETES

a I represents IDD group; II represents NIDD group.

Totals

(7) Medication

(6) Foot care

(5) Identification

(4) Balancing

(3) Testing

(2) Exercise

10

I II I II I II I II I II I II I II

(1) Diet

5 0 0 3 1 0 0 2 0 0 0 5 0

cost

Type of diabetesa

OF REGIMEN BARRIER

Aspect of self-care

FREQUENCY

TABLE IV

98

17 13 11 11 12 5 11 2 4 3 5 0 4 0

Inconvenience

84

15 11 10 10 4 3 8 6 2 7 2 4 0 2

Lack of planning

14

1 1 1 5 1 1 2 0 2 0 0 0 0

0

Not important

5

2 2 0 0 1 0 0 0 0 0

0 0 0 0

Not told

58

6 1 7 2 11 6 3 1 6 8 6 1 0 0

Can’t be bothered

72 53 58 52 52 23 31 18 16 20 20 10 15 4

Totals

47

Perception of the regime Perceived benefits were fairly similar between the groups except on the use of medication and diabetic identification, favored more by the IDD. The IDD group reports higher compliance on each aspect of the regime (Table III). Since these subjects would have a higher probability of disease symptoms, particularly if they disregarded their treatment, denial of illness would be more difficult and the outcomes of neglect more severe. This coincides with the findings of Simon [12] and Sussman [13] who found poor compliance associated with lack of symptoms. Table III shows the highly selective nature of regime compliance for both groups, a fact confirmed by Haynes and Sackett [ 171 and of interest to patient educators, who could help patients identify alternatives to those aspects of the regime they cannot subscribe to. Subjects were asked to indicate specific difficulties associated with each aspect of the regime. Table IV ranks regime components according to the number of impediments associated with performance. For both groups, diet and exercise head the problem list as shown by the row totals. Barriers most frequently noted were: The difficulty and inconvenience of maintaining the diet, and the time and difficulty of obtaining regular exercise. In almost every cell, the IDD group has responded proportionately to its greater size, as might be expected, but the NIDD group responded disproportionately to the need for diabetic identification and the need for exercise, attributable possibly to its older age. The column totals show that subjects attributed their compliance impediments chiefly to inconvenience, difficulty and lack of planning, and not to the fact that they were not informed of the need or did not feel it important to their health. This has implications for diabetes instruction classes, suggesting that more time could be spent helping people to restructure their daily routines to accommodate their regime, and to identify individual strategies for dealing with perceived difficulties. The use of a grid such as Table IV for each client could help pinpoint particular obstacles and initiate specific environmental restructuring to avoid negative stimuli and increase positive reinforcement. Social support Table V shows that for both groups, the spouse was the primary source of support, with parents being of more importance in the IDD or younger group. Of concern are the 15 subjects perceiving no-one as supportive. For these, agency staff must offer assistance, encouragement, motivation, and reinforcement normally supplied by one’s personal associates. Special concerns Table VI ranks a list of specific concerns, frequently voiced by clinic patients. The slight differences in ranking would appear consistent with the increased severity associated with the IDD state, and its younger age.

48 TABLE V PERSONS REPORTED HELPFUL WITH DIABETES

Parents Spouse Children Friends Relations Nobody

IDD (N = 138)

NIDD (N = 108)

N

%a

N

%a

32 65 9 35 41 6

23 47 7 25 30 4

7 59 10 22 20 9

6 55 9 20 18 8

a Since some subjects reported more than category, column totals more than 100%.

Limitations of the study Findings of this survey cannot be generalized to others with diabetes since there are inherent limitations, including an untested instrument of modest reliability, a convenience sample, and no control data for the parent sample. If this study were to be repeated, it is recommended that the two subject groups be matched for age and duration of illness to eliminate the possible influences of age and experience.

Implications for patient education Diabetes is a heterogeneous disorder characterized by varying levels of glycemic competence, disease severity, and client characteristics. Our findings support the belief that differences exist in adaptation to diabetes between IDD and NIDD patients, and between the groups’ characteristics. In many diabetes clinics, classes supplement the individual instruction given by physicians. Patients with both types of diabetes are processed through these .

TABLE VI SPECIAL CONCERNS RANKED BY GROUPS Concern

Future health Concern for children Lack of dietary freedom Increased self-consciousness Need for medication Need for clinic attendance Episodes of feeling poorly Feeling different from others

IDD (N = 138)

NIDD (N = 108)

Rank

Rank

49

sessions together. We suggest that patients might benefit from separate sessions recognizing differing mean ages and disease severity. Assessments of patients’ learning requirements should include an appraisal of those functional abilities required to carry out the prescribed self-care and an awareness of other health problems with which the patient must contend which could make adoption of the regime more difficult. Diet and exercise tolerance are affected by a variety of disorders, and additional medication prescriptions can make the daily routine more complex. Physical and functional problems, the implications of prognosis, jobrelated difficulties, lack of satisfaction with care, spouse dissatisfaction and discouragement with levels of control are topics which could be anticipated to be of greater concern to the IDD group. Enlistment of spouses in the educational sessions and clinical assessments might gain more understanding and support of the regime. The variability of responses to barriers suggests the merit of an individual approach to helping clients identify difficulties in their daily self-care routines. Another focus for concern is the generally lower level of scores on all indices for the NIDD sample. Is it possible that they perceive their diabetes less threatening and therefore feel less impelled to follow their prescribed self care? CONCLUSION

Patient teaching and clinical supervision are the two means by which health professionals support patients’ efforts to cope with diabetes. To identify critical treatment targets in the form of group characteristics and from two groups of diabetic particularized learning needs, responses patients were compared. The groups represented IDD and NIDD, two types of diabetes united by a common treatment goal but differing on all other disease parameters. Significant differences were demonstrated between the groups in demographics, clinical indicators of disease and in behavioral and perceptual adaptation to the condition. Findings lend moderate support to the notion that increased severity of diabetes is a valid indicator of increased adaptive demand, and that patients would benefit from educational instruction specifically geared to the greater or lesser demands of their type of diabetes. ACKNOWLEDGMENTS

This project was supported by grants from the National Health Research Development Program, Ottawa, Canada, and the Ottawa Civic Hospital Foundation. The help of Thomas Goss, PhD, and John Bell of the Health Research Unit of the University of Ottawa, in data programming and analysis is most gratefully acknowledged.

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