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Self-reported quality of life and the effect of different clinical and demographic characteristics in people with type 1 diabetes
Diabetes Research and Clinical Practice, 19 (1993) 139-149 0 1993 Elsevier Scientific Publishers Ireland Ltd. All rights reserved.
DIABET
139 016%8227/93/$06.00
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Self-reported quality of life and the effect of different clinical and demographic characteristics in people with type 1 diabetes Berit Rokne Hanestad Department of Public Health and Primary Health Care, Division for Nursing Science, Medical Faculty, University of Bergen. Norwa) (Received
1 I March
1992: revision
accepted
8 September
1992)
Summary
The aims of the present study were to describe how people with type 1 diabetes experienced their quality of life and to examine the effect of the different background characteristics of sex, age, social status, education, disease duration, HbA, levels, regimen and the frequency of complications on self-reported quality of life. A self-administered questionnaire consisting of 28 items measuring satisfaction within the physical, psychological, social and activity/behavioural life-domain and 11 well-being scales was completed by 247 patients with type 1 diabetes who consecutively attended a Norwegian diabetes clinic. Main findings from the study showed that over 80% of patients reported their capacity for self-care, general well-being, satisfaction with life and social contacts to be quite good or better. Forty five percent of patients perceived their life situation to be negatively effected due to diabetes. Multivariate analysis showed that living alone had a negative effect on satisfaction in the physical, social and psychological life-domain. Higher levels of HbAr were associated with reported lower satisfaction within the physical and activity/behavioural lifedomain. The effect of the different background characteristics on reported well-being showed no consistent pattern. These findings indicate that the majority of patients in this study experienced a satisfactory quality of life despite living with a chronic illness such as diabetes.
Key words: Quality of life; Type 1 diabetes
Introduction
Type 1 diabetes can affect many aspects of everyday life due to the need to carry out appropriate self-care behaviour including regular inCorrespondence to: Berit Rokne Hanestad, Department of Public Health and Primary Health Care, Division for Nursing Science, Ulriksdal 8c, 5009 Bergen, Norway.
sulin injections, blood glucose monitoring and dietary control which all can affect both short and long-term health and well-being. Because of the complex and possibly demanding regimen due to the disease, living with diabetes needs to be considered in a psychosocial context [l-3]. However. reviews of the behavioural and psychosocial literature have found no evidence for a constellation of psychosocial or psychiatric features or of a
140
personality type specific to diabetes [4,5]. However, the stresses invoked by the diagnoses of any chronic disease and the accompanying possibility for psychological dysfunction have been described [6]. Holmes [7] states that adaptation to each phase of diabetes is determined by the individual’s current circumstances and the emotions and perceptions these can evoke from past experience. Patients’ subjective feelings with respect to the quality of their lives whilst coping with a chronic disease are becoming recognized as important factors in the planning and evaluation of treatment strategies. This has resulted in quality of life being increasingly recognized as an important outcome in clinical research in addition to the more traditional, biomedical measures [8]. Quality of life is concerned with the experience of the individual’s life situation either in general or in relation to different life-domains including physical status and functional abilities, psychological status and wellbeing and social interactions [9-221. As a consequence, the first aim of the present study was to describe how people with type 1 diabetes experienced their quality of life. In addition, it is also important to identify if specific patient characteristics can predict the quality of life experienced. Therefore the second aim of the present study was to examine the effect of the background characteristics sex, age, social status, education, disease duration, HbA,, regimen and the frequency of complications on self-reported quality of life.
Study Group
Three hundred and nineteen people with type 1 diabetes attending the diabetes clinic at the University Hospital of Bergen were sent a letter prior to their next clinic appointment inviting them to participate in the study. This group represents those with consecutive appointments at the diabetes clinic over a period of 3 months. Of these, 25 (8%) failed to keep their clinic appointment and 24 (8%) either failed to receive a questionnaire or were excluded from the study because they had a disease duration of less than 6 months,
had type 2 diabetes, blindness or other diseases. Of the 270 patients eligible for inclusion in the study, 11 (4%) refused to participate and 12 (4%) failed to return their questionnaire. Thus, 247 (92%) patients participated in the study, representing approx. 50% of all the regular attenders with type 1 diabetes.
Methods Materials and procedure
The quality of life was assessed using the quality of life package developed by Hornquist [ 15,211. Hiirnquist’s conceptualization of the quality of life is based on both his own research and findings of other researchers [ 11,15,21,23,24]. Hiirnquist defines quality of life as recognized need and functional satisfaction within a number of fundamental life domains, with special emphasis on we&being. The quality of life concept has been operationalized to evaluate the following domains: (1) physical covering overall bodily health and specific sickness impact; (2) psychological covering satisfaction with life, well-being in general and intellectual functioning; (3) social covering social contact in general as well as specifically relating to family and sexual life; (4) behavioural/activity covering capacity for self care, work and mobility; (5) structural covering religious dimension; (6) material covering the individual’s personal economic status. It is primarily the individual’s own perception of satisfaction of life that determines quality of life. Each of the items in the life-domains has seven response alternatives with scores on single items ranging from -3 to +3. A sum score is calculated for each of the domains, with higher scores indicating more satisfaction. The life-domains consist of a different number of items, thus resulting in different maximum scores. The well-being rating, which is complementary to the psychological life-domain, addresses 11 kinds of emotions or perceptions in more detail and is designed to reflect the individual’s selfconcept directly as well as indirectly through his/her social interactions. Some scales are more emotionally loaded, while others are more
141
behaviourally loaded. Each of the 11 well-being scales consist of ten statements. For each statement respondents choose whether the statement represents ‘fully’, ‘partially’ or ‘not at all’ their own life situation. Sum scores vary from 0 to 10 for each of the scales. For the scales of inferiority, loneliness, guilt, tension, anxiety, indolence and obsessive traits an optimal score is towards zero. For the scales sociability, basic mood, security and future orientation, an optimal score is 10. The reliability and validity of the instrument was examined by inspection of the internal consistency of the scales and the relationship between the various domains, respectively. The questionnaire was administered and completed at the diabetes clinic. A member of the research staff was available to give advice on completing the questionnaire. Clinical data
haemoglobin (HbAt) was Glycosylated measured during attendance at the clinic while the questionnaire was being completed. The normal range was 5.0-7.0%. Details of patient complications were based on case notes which were checked against patients’ self-reports.
TABLE
1
The 4 life-domains together with the number of items in each of the domains together with estimates of internal consistency (Cronbach’s alpha). Items
Life-domain Physical Bodily health Impact of diabetes on daily life/ diabetes symptoms Psychological Life satisfaction Cognition Social Social contacts in general Family life Sexual life Behaviour/Activity Possibilities for an active life Capacity for self-care behaviour Working capacity Basic habits
Alpha
6
0.49
6
0.86
5
0.71
11
0.69
The structural life-domain (1 item) is not included in the present paper. The material life-domain was considered less relevant for this study group and, consequently, was excluded.
Results Statistical analysis
Associations between demographic and clinical characteristics and satisfaction within each lifedomain and self reported well-being were analysed using forward stepwise multivariate linear regression analysis by means of the Biomedical Computer Programs (BMPD). TABLE
2
The well-being Main loading
rating
scales (each scale consists Self-concept
Behavioural
Tension Obsessive
of 10 items) and their internal Self-concept
independently
Scale
Emotional
Table 1 shows the different life-domains together with the number of items in each of the domains with estimates of internal consistency obtained in the present study. The components of the well-being scales and estimates of their internal consistency for this study are given in Table 2.
traits
Basic mood Indolence Future orientation Anxiety Security
consistency
(Cronbach’s
in social interaction
Alpha
Scale
Alpha
0.75 0.46
Sociability
0.79
0.78 0.81 0.80 0.79 0.82
Loneliness Inferiority Guilt
0.80 0.73 0.71
alpha)
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The validity of the instrument was supported by the logical relationship between the different lifedomains and the well-being scales. Since the optimal score within the well-being scales was either either 0 or 10, the logical relationship between the scales was represented by both positive and negative correlation coefficients, i.e. a negative correlation between the anxiety and security wellbeing scales (r = -0.64) and a positive correlation between anxiety and tension (r = 0.72). The absolute values of the correlation coefficient ranged from -0.64 to 0.72 (P < 0.05). The demographic and clinical characteristics of the sample are shown in Table 3. Responses to individual items within the different life-domains are shown in Tables 4-7. It can be seen that, within the psychological life-domain, more than 80% of the patients reported their general well-being, opportunities for a meaningful life and satisfaction with life as a whole as very good/good/quite good. TABLE 3 Clinical and demographic characteristics of the patients studied Sex Male Female Age (years) Duration of diabetes (years) HbA, (“XI) Regimen l-2 injections/day Multi-injections Pump Unknown Social status Living alone Living with others Education Elementary/secondary school University (first and higher degrees) Retinopathy Yes No Neuropathy Yes No Nephropathy Yes No N (%), or mean f SD. (range).
138 (56) 109 (44) 34 f 13 (16-74) 13 f 9 (0.5-40) 9.7 + 2.4 (6-19) 72 (29) 169 (68) 1 (0.4) 5 (2) 41 (17) 205 (83) 188 (76) 59 (24) 59 (25) 180 (75) 19 (8) 222 (92) 17 (7) 222 (93)
Intellectual functioning was reported to be very good/good/quite good with respect to thinking clearly, memory and concentration by 89%, 81% and 78% of the sample, respectively. Over 85% of the sample reported having very good/good/quite good social contacts with others whilst 92% reported very good/good/quite good relationships with family/close friends. Seventytwo percent of the sample reported their sexual life as very good/good/quite good. For the activity/behavioural life-domain, 84% reported having very good/good/quite good opportunities for an active life and working capacity. Eighty nine percent of people perceived their ability to carry out self-care as very good/good/quite good. Regimen adherence was reported as being quite poor/poor/very poor by 3% of the people whilst, 69% reported their regimen adherence as very good/good/quite good. Behaviour in relation to exercise, smoking and self-monitoring of blood glucose was rated as quite bad/bad/very bad by 27%, 26% and 23% of the sample, respectively, whilst 83%, 78% and 68% rated their behaviour in relation to alcohol consumption, sleep and dietary intake as being very good/good/quite good, respectively. Ninety-two percent reported that injecting themselves was very easy/easy/quite easy. Examination of individual items within the physical life-domain showed that 45% of the people perceived that their life situation had deteriorated quite a lot as a result of having diabetes. Twenty-five percent reported their diabetes to be quite unstable/unstable/very unstable and 27% reported their blood glucose as being very high/high/quite high. Twenty-four percent reported frequency of hypoglycaemia as very often/often/quite often. However, 82% reported their awareness of hypoglycaemic symptoms as very good/good/quite good. Seventy-one percent of the sample perceived their physical health as being quite good/good/very good. Results of the multivariate linear regression analysis showing the effect of demographic and clinical variables are presented in Tables 8 and 9. Living alone had a negative effect on reported satisfaction within the physical, social and psychological life-domains. Increasing age was associated with less satisfaction in the
143
TABLE
4
Response
to the individual
Individual
items within
the psychological
items
life-domain
(percent)
Response Very good/good/ quite good (Score >O) n (%)
Neither good/ nor bad (Score = 0) n (“X1)
Quite bad/bad/ very bad (Score
My general well-being is My opportunities for a meaningful life is My satisfaction with life as a whole is
197 (80) 212 (86) 206 (84)
32 (13) 28 (11) 23 (9)
My concentration is My ability to think clearly
191 (78) 219 (89)
39 (16) 23 (9)
200 (81)
27 (II)
16 6 15 15 4 19
My memory
is
is
psychological life-domain and longer disease duration with less satisfaction within the social lifedomain. Reported lower satisfaction within the physical and activity/behavioural life-domains was associated with higher HbAi level. Multi-injection treatment was associated with greater satisfaction within the social life-domain. The occurrence of nephropathy had a negative effect on satisfaction within the physical life-domain However, neuropathy was associated with greater satisfaction within the social life-domain. Higher educational level was associated with increased sociability, safety and optimism for the future and less loneliness, obsessive trails and in-
TABLE
(7) (2) (6) (6) (2) (8)
dolence. Women reported more guilt and tension and perceived themselves more sociable than men. Living together with others was associated with less loneliness and indolence and more safety. Increasing age was associated with less guilt and optimism for the future and more obsessive traits. Higher level of HbA, was associated with more sociability and longer disease duration was associated with more indolence. Discussion Hornquist’s model and assessment package was chosen as its theoretical base reflects important
5
Responds
to items within
Individual
items
My social contact in My relationship with My relationship with friends is My sexual life is My relationship with
the social life-domain
(percent) Responses
general is others is my family/close
health
personnel
is
Very good/good/ quite good (Score >O) n (‘X)
Neither good nor bad (Score = 0) n (‘%J)
Quite bad/bad/ very bad (Score CO) n (I%,)
215 (87) 217 (88)
18 (7) 20 (8)
13 (5) 9 (4)
225 (92) 167 (72) 208 (85)
15 (6) 39 (17) 30 (12)
4 (2) 27 (12) 8 (3) -
144
TABLE
6
Responses
to items within
Individual
items
My My My My My My My My My To
the activity/bchavioural
(percent)
Responses
an active is is
capacity
activity alcohol smoking sleeping self-monitoring inject
“Response bResponse
life-domain
is
of blood
is
Very good/good/ quite good (Score >0) n (%I)
Neither good/ nor bad (Score = 0) n (‘I/,)
204 219 216
26 (11) 24 (IO) 23 68 53 14 26 27 33 64
126
(9) (28) (22) (30) (11) (11) (13) (26)
(5) (2) (7) (3) (11) (27)
15 (6) 62 (26) 21 (9) 56 (23) 5 (2)
for this item was very strong/strong/quite strong, neither strong nor weak, quite poor/poor/very for this item was very easy/easy/quite easy, neither easy nor difficult, quite diBicult/difBcult/very
aspects of the quality of life concept such as subjectivity and coverage. Additionally, the assessment package has been shown to be psychometrically satisfactory in terms of reliabiliTABLE
n (%)
13 4 8 8 26 66
14 (6)
alternative alternative
Quite bad/bad very bad (Score
ty, validity and sensitivity in previous studies [l&21,25]. In the present study reliability of data was examined using Cronbach’s alpha. Cronbach’s alpha
7
Responses
to items within
Individual
items
Diabetes
My blood
my life situation
is
glucose
is
I get hypos
When I am getting
My physical
health
life-domain
(percent) Responses
deteriorates
My diabetes
the physical
a hypo I feel it
is
poor. difftcult.
(score)
n (X)
Very much/much/quite much ( < 0) Neither much nor little (0) Quite little/little/very little (>0)
112 (45) 26 (I 1) 109 (44)
Very stable/stable/quite stable ( > 0) Neither stable nor unstable (0) Quite unstable/unstable/very unstable
163 (66) (< 0)
23 (9) 61 (25)
Very high/high/quite high ( < 0) Neither high nor low (0) Quite lowilow/very low (> 0)
66 (27) 149 (60) 32 (13)
Very often/often/quite often ( < 0) Neither often nor seldom (0) Quite seldom/seldom/very seldom ( > 0)
58 (24) 56 (23) 132 (54)
Very good/good/quite good ( > 0) Neither good nor bad (0) Quite bad/bad/very bad (< 0)
200 (82)
Very good/good/quite good ( > 0) Neither good nor bad (0) Quite bad/bad/very bad (
174 (71) 53 (21)
21 (9) 23 (9)
20 (8)
145
TABLE Results
8 of the stepwise multivariate
linear regression
analysis
for the different
life-domains
Life domain
Explanatory
factors
Social life-domain (n = 244)
Social status Disease duration Neuropathy Regimen
-2.59 -0.10 -2.64 1.38
-4.06,-1.12 -0.16,-0.03 -5.02,-0.27 0.19,2.58
Social status
6
Age
-2.26 -0.07
-4.00,-0.5
(n = 240)
Physical life-domain
(n = 230)
Social status HbA, Nephropathy
-1.89 -0.39 3.00
-3.33,-0.46 -0.62.-0.16 0.92,5.08
HbA,
-0.55
-0.97.-o.
/3, regression
coefftcient;
95% C.I., 95% confidence
interval;
R2, squared
provides an index of the homogenity of a group of items which are measuring a particular attribute and reflects the extent to which the individual items are intercorrelated. Its value range from 0 to 1.Owith an alpha of 1.O representing a perfect correlation between all items and a high level of item TABLE
9
Results
of the stepwise
multivariate
linear regression
Well-being
Explanatory
Future orientation (n = 236)
analysis
factors
multiple
R= 0.31
I -0.12,-0.01
Psychological life-domain
Activity/behavioural life-domain (n = 233)
P
95% C.I.
14
correlation
0.01 0.01
0.22
0.01
0.33
0.01
0.17
coefficient.
redundancy. The value of Cronbach’s alpha is dependent on both item intercorrelation as well as the number of items measuring the attribute. However values within the range of 0.70-0.85 are considered to be very satisfactory [26]. In the present study the internal consistency of the
for the well-being
scales P
R=
P
95% C.I.
Education Age
0.86 -0.02
0.30.1.43 -0.05,-0.01
0.25
Indolence (n = 232)
Social status Education Disease duration
0.96 -0.98 0.03
0.30.1.62 -1.51,-0.40 0.00,0.06
0.30
Safety (n = 238)
Social status Education
-0.95 0.72
-1.61,-0.29 0.15.1.30
0.01 0.01
0.23
Tension (n = 235)
Sex
0.73
0.27.1.18
0.20
Obsessive traits (n = 234)
Education Age
-0.63 0.02
- 1.02,-0.24 0.01.0.03
0.26
Guilt (n = 237)
Sex Age
0.56 -0.02
0.14,0.98 -0.03.0.00
0.01 0.04
0.22
Loneliness (n = 229)
Social status Education
0.83 -0.80
0.22.1.45 - 1.34,-0.25
0.01
0.25
Sociabitity (n = 232)
Sex Education HbA,
0.03 0.01
0.27
0, regression
coefficient;
95% C.I., 95% confidence
0.51 0.69 0.14 interval;
R2, squared
0.07, 0.96 0.17.1.21 0.05.0.23 multiple
correlation
coefficient.
146
psychological, social and behavioural/activity lifedomains was satisfactory. For ratings in the physical life-domain, however, the alpha coeffrcient was only 0.49 and may be because of the small number of items representing this domain. Additionally, even if the items concerning this lifedomain are measuring the underlying concept equally, they may be heterogeneous in their relationship to each other. The internal consistency of the well-being scales was satisfactory except for the scale measuring obsessive traits and because of this it has to be viewed with caution. Regarding the validity of the scales, the intercorrelations obtained in the present study support the validation reported in previous studies [ 15,2 1,251. This present study is based on self report measures which are subject to a number of errors of measurement including response style, idealization and resignation [19,27]. However, one of the benefits of self-reported quality of life is that it provides information of the patient’s own experience in addition to the more traditional biomedical measures [8]. Studies in which the patients rated quality of life, when compared to those of the physician and nurse, have shown only weak associations, indicating that it is the patient who is best able to express his own feelings [28,29]. With respect to the items within the activity/ behavioural life-domain, more than 80% of the sample reported that they felt fairly satisfied with their opportunities for an active life as well as capacity for self-care and work. However, despite this twenty five percent of the sample reported that their behaviour in relation to activity, smoking and self monitoring of blood glucose was quite bad/bad/very bad. Self injection was reported to be easy for the majority of the sample. These results from the present study indicating that life-style recommendations are more difficult to adhere to than carrying out insulin injections are in accordance with other studies [30-321. The results within the physical life-domain showing that 71% of the sample reported their physical health in a positive manner indicating that perception of being in good health is not contradictory with having a chronic disease. This is in accordance with the findings from other studies [29,33]. However, almost twenty-five percent of
the sample found their diabetes to be unstable and their blood glucose too high. This group might represent an at risk group with respect to longterm complications because of the association between poor metabolic control and long term complications [34-361. Hypoglycaemia is a common problem in patients with type 1 diabetes [37]. Hypoglycaemic episodes were frequently experienced by almost twenty-five percent of the sample, with nine percent reporting that they were unable to recognize symptoms of hypoglycaemia. This is an important finding as failure to recognize symptoms of hypoglycaemia can result in a life threatening condition. However, it is difficult to determine accurately the frequency of hypoglycaemia, particularly mild or moderate episodes, when self managed or when episodes are nocturnal. Severe hypoglycaemia that requires assistance from others has been reported to occur in 10% of patients per annum [37]. Further analysis within the physical life-domain showed that 44% of the sample perceived their disease to be affecting their life situation in a negative way. Therefore, it was surprising that, despite this, the majority of the sample were fairly satisfied with the psychosocial aspects of their lives. This finding may be due to the items within the psychological and social lifedomain being non-disease specific and that the responses were reactions to factors other than diabetes. This is a positive finding indicating that living with a chronic disease is not necessarily associated with reduced quality of life experience [29,33]. One might ask the question if these results are cultural and/or treatment specific. The finding that a large proportion of the sample were satisfied with their lives in spite of diabetes is in accordance with other studies performed in countries other than Norway indicating that this is not a specific Norwegian phenomenon [38,39]. Of course the positive result in the present study may reflect that the patients visiting the diabetes clinic at the hospital in Bergen are receiving a satisfactory treatment with regard to continuous education and counselling. With onset of diabetes the patients are hospitalized for one week for examination and education and thereafter the patients are visiting the diabetes clinic once or twice per year or more frequently depending on the needs of
147
the patients. The main elements of the continuing care are physical examination, i.e. weight and blood pressure, laboratory tests, i.e. HbAi and management plan including adherence to all aspects of self-care and psychological adjustment. To what degree the diabetes treatment and care are reflected in these results is impossible to identify. In any case these results indicate for the health personnel working at the diabetes clinic that the majority of their patients are satisfied with their lives irrespective of how much their satisfaction is dependent on treatment and care. This information is especially valuable to deliver to newly diagnosed patients showing them that living with diabetes is not necessarily a contradiction to living a good life. In this study no comparative data was obtained for a normal population or other chronic illness patients. As a result, it is not possible to determine whether patients with diabetes differ from other populations with regard to their level of quality of life. However a study comprising 758 patients each of whom had one of six different chronic illnesses (arthritis, diabetes, cancer, renal disease, dermatologic disorder or depression) found that five of the groups did not differ significantly from one another or from the general public, but all had significantly higher scores for psychological status when compared with the sixth group, patients under treatment for depression [33]. Cassileth et al. [33] state that these results indicate that physically ill patients remain psychologically intact and similar in level of mental health to the general public. Effects of background variables on the different life-domains showed that living alone was associated with less satisfaction within the physical, social and psychological life-domain. The effect of social support in relation to quality of life is described elsewhere [3,29,40,41]. In this study, lower HbA, levels were associated with higher satisfaction within the physical and activityibehavioural life-domains. This might be due to the items within these life-domains reflecting disease related aspects such as blood glucose level and self-care behaviour. However, no relationship was found between HbA, and the psychological and social life-domains, A further analysis of the
association between HbA, and quality of life is described elsewhere [4l].The finding that people using multi-injection regimen were more satisfied within the social life-domain might indicate that this regimen may permit the individual to live a more flexible life-style. Hiirnquist et al. [43] found that multi-injection treatment contributes to a better quality of life. Regarding reported complications, nephropathy was negatively associated with satisfaction within the physical life-domain while neuropathy was positively associated with the social life-domain. It is surprising that complications in general did not negatively effect quality of life because of the possible implications on daily life etc. However, in this study the severity of complications was not determined and although the findings reported here indicates that the presence of complications did not adversely affect quality of life, no firm conclusion can be drawn. Although longer disease duration was associated with decreased satisfaction within the social lifedomain, disease duration was not negatively associated with satisfaction within the other lifedomains. However, increasing age was associated with less satisfaction within the psychological lifedomain. Whether these results are due to ageing in general or specifically to having diabetes is difficult to determine. For the well-being scales no consistent pattern in the effects of the variables was found. With regard to the demographic characteristics educational level seemed to be of most importance and was found to be positively associated with future orientation and sociability and negatively associated with obsessive traits, indolence, loneliness and safety. Apart from the positive association between HbA, and sociability and disease duration and indolence, respectively, disease related variables, i.e. complications and regimen explained little of the variance. Despite the logical and significant associations between the background characteristics and the life-domain and well-being scales, it is not possible to identify a pattern in which one or more variables are of specific importance in reported quality of life. The explained variance of the independent variables on the different life-domains and well-being scales was not high. Within the lifedomains, the explained variance ranged from 17 to
148
33%, with the lowest explained variance within the activity/behavioural life-domain and the highest within the physical life-domain,
2
3
4
A review
5 6
7 8
[ 111. Abbey and Andrews
[40] suggested in their model that internal control, social support and performance resulted in increased life quality, whereas stress and depression have the reverse effect. Kevin McNeil [44] reported that second-order factor analysis on a variety of quality of life measures repeatedly isolated a main factor which supports other findings by showing a high intercorrelation between measurements of quality of life and psychosocial aspects including personality, self-esteem and depression, indicating that these scales are measuring something similar. Further studies need to analyse the characteristic of quality of life. If quality of life is a stable personality characteristic this will influence the effects of different interventions in treatment and care. Acknowledgements
This study has been financially supported by the Norwegian Nurses Association, the Norwegian Diabetes Association and the Norwegian Council for Science and the Humanities. I am indebted to Dr. Fil Ulla Qvarnstr@n, Jan Olof Hornquist and Dr. Med. Sylvi Aanderud for their support and advice and to the nursing staff at the Department of Medicine at Haukeland Hospital in Bergen for their cooperation and goodwill.
9 IO 11
12 13 14
15 16 17
18
19 20 21 22
23
References 1
Bradley, C. and Marteau. M. (1986) Towards an integration of psychological and medical perspectives of diabetes
24
management. In: K.G.M.M. Alberti and L.P. Krall (Eds.), The Diabetes Annual - 2. pp. 169-184. Shillitoe, R.W. (1988) Psychology and Diabetes. Psychosocial Factors in Management and Control. Chapman and Hall, London. Helz, J.W. and Templeton, M.D. (1990) Evidence of the role of psychosocial factors in diabetes mellitus: A review. Am. J. Psychiatr. 147, 1275-1282. Wilkinson, D.G. (1981) Psychiatric aspects of diabetes mellitus. Br. J. Psychiatr. 138, l-9. Dunn, SM. and Turtle, J.R. (1981) The myth of the diabetic personality. Diabetes Care 4, 640-646. Cohen, F. and Lazarus, R.F. (1979) Coping with the stresses of illness. In: G.C. Stone. F. Cohen and N.E. Adler (Eds.), Health Psychology - A Handbook. Jossey Bass, San Francisco, pp. 217-254. MacRae Holmes, D. (1986) The person and diabetes in psychosocial context. Diabetes Care 9, 194-206. Spilker, B. (1990) Quality of Life Assessments in Clinical Trials. Raven Press, New York. Cantril, H. (1967) The Pattern of Human Concerns, Rutgers University Press, New Brunswick, New Jersey. Bradburn, N.M. (1969) The Structure of Psychological Well-being. Aldine, Chicago. Campell, A., Converse, P.E. and Rogers, W. (1976) The Quality of American Life. Perceptions, Evaluations. Satisfactions. Russel Sage, New York. Andrews, F.M. and Withey, B. (1976) Social Indicators of Well-being. Plenum Press, New York. Tatarkiewicz, W. (1976) Analysis of Happiness. PWN Polish Scientific Publishers, Warszawa. George, L.K. (1981) Subjective well-being: Conceptual and methodological issues. Ann. Rev. Gerontol. Geriatr. 2, 345-382. Hiirnquist, J.O. (1982) The concept of quality of life. Stand. J. Sot. Med. 10, 57-61. Diener, E. (1984) Subjective well-being. Psychol. Bull. 95. 542-575. Kamman. R., Farry, M. and Herbison, P. (1984) The analysis and measurement of happiness as a sense of wellbeing. Sot. Indicat. Res. 15, 91- 116. Meadows, K.A. (1991) Assessing quality of life. In: C. Bradley, P. Home and M. Christie (Eds.), The Technology of Diabetes Care. Harwood Academic Publishers, United Kingdom, pp. 192-203. Naess, S. (1987) Quality of Life Research. Institute of Applied Social Research, Oslo. Fowlie. M. and Berkely, J. (1987) Quality of life - a review of the literature. Fam. Pratt. 4, 226-234. Hornquist, J.O. (1989) Quality of life. Concept and assessment. Stand. J. Sot. Med. 18, 69-79. Goodinson, SM. and Singleton. J. (1989) Quality of life: a critical review of current concepts. measures and their clinical implications. Int. J. Nurs. Stud. 26, 359-369. Berg, R.L., Hallhauser, D.S. and Berk, S.N. (1976) Neglected aspects of the quality of life. Health Serv. Res. 11,391-395. Wenger, N.K. (1986) Quality of life: Concept and approach to measurement. Adv. Cardiol. 33, 122-130.
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26 21
28
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Homquist, J.O., Hansson, B., Akerlind, 1. and Larsson, J. (1992) Severity of disease and quality of life: A comparison in patients with cancer and benign disease. Qua]. Life Res. 1, 135-141. Cronbach, L.J. (1951) Coelicient alpha and the internal structure of tests. Psychometrika 16, 297-334. Mourn, T. (1988) Yea-saying and mood-of-the-day effects in self-reported quality of life. Sot. Indicat. Res. 20. 177-195. Slevin, M.L.. Plant, H., Lynch, D.. Drinkwater, J. and Gregory, W.N. (1988) Who should measure quality of life, the doctor or the patient? Br. J. Cancer 57. 109-I 12. Pearlman. R.A. and Uhlmann. R.F. (1988) Quality of life in chronic diseases: Perceptions of elderly patients. J. Gerontol. 43, M25-30. Glasgow, R.E.. McCaul, K.D. and Schafer. L.C. (1986) Barriers to regimen adherence among persons with insulin-dependent diabetes. J. Behav. Med. 9. 65-77. Lundman, B., Asplund, K. and Norberg. A. (1988) Emotions and attitudes in insulin dependent diabetes. Stand. J. Caring Sci. 2, 103-I 11. Ary. D.V.. Toobert. D., Wilson. W. and Glasgow, R.E. (1986) Patient perspective on factors contributing to nonadherence to diabetes regimen. Diabetes Care 9, 168-172. Cassileth. B.R.. Lusk, E.J., Strouse. B.A. et al. (1984) Psychological status in chronic illness. New Engl. J. Med. 311. 506-511. Dahl-Jorgensen, K. (1987) Near-normoglycemia and late diabetic complications. The Oslo Study. Acta Endocrinol. (Suppl.) 115, 7-38. Feldt-Rasmussen, B.. Mathiesen. E.R. and Deckert, T. (1986) Effect of two years of strict metabolic control on progression of incipient nephropathy in insulin-dependent diabetes. Lancet 2. 1300- 1304.
36
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Pirart, J. (1978) Diabetes mellitus and its degenerative complications: a prospective study of 4400 patients observed between 1947 and 1973. Diabetes Care 1. 168- 188, 252-263. Agardh. C.D. (1990) Hypoglycemia in Type I (insulin dependent) diabetes mellitus. In: Treatment of Insulin Dependent Diabetes Mellitus. National Board of Health and Welfare Drug Information Committee, Sweden. 2. pp. 39-45. Lundman, B., Asplund K. and Norberg, A. (1990) Living with diabetes: Perceptions of well being. Res. Nurs. Health 13, 255-262. The DCCT Research Group. (1988) Reliability and validity of a diabetes quality of life measure for the diabetes control and complication trial (DCCT). Diabetes Care II. 725-732. Abbey. A. and Andrews, F.M. (1985) Modeling the psychological determinants of life quality. Sot. Indicat. Res. 16. i-34. Wikby, A., Hornquist. J.O. and Andersson, M.D. (1991) Background. quality of life and metabolic control in patients with insulin dependent diabetes mellitus. Diabetes Res. Clin. Pratt. 13. 53-62. Hanestad. B.R.. Hornquist, J.O. and Albrektsen. G. (1991) Self-assessed quality of life and metabolic control in persons with insulin-dependent diabetes mellitus (IDDM). Stand. J. Sot. Med. 19. 57-65. Hornquist. J.O.. Wikby. A.. Andersson. P.O. and Dufva. A.M. (1990) Insulin-pen treatment. quality of life and metabolic control: retrospective intra-group evaluations. Diabetes Res. Clin. Pratt. 10, 221-230 Kevin McNeil. J.. Stones, M.J and Kozma. A. (1986) Subjective well-being in later life: Issues concerning measurement and prediction. Sot. Indicat. Res. 18, 35-70.
DIABET
139 016%8227/93/$06.00
007 10
Self-reported quality of life and the effect of different clinical and demographic characteristics in people with type 1 diabetes Berit Rokne Hanestad Department of Public Health and Primary Health Care, Division for Nursing Science, Medical Faculty, University of Bergen. Norwa) (Received
1 I March
1992: revision
accepted
8 September
1992)
Summary
The aims of the present study were to describe how people with type 1 diabetes experienced their quality of life and to examine the effect of the different background characteristics of sex, age, social status, education, disease duration, HbA, levels, regimen and the frequency of complications on self-reported quality of life. A self-administered questionnaire consisting of 28 items measuring satisfaction within the physical, psychological, social and activity/behavioural life-domain and 11 well-being scales was completed by 247 patients with type 1 diabetes who consecutively attended a Norwegian diabetes clinic. Main findings from the study showed that over 80% of patients reported their capacity for self-care, general well-being, satisfaction with life and social contacts to be quite good or better. Forty five percent of patients perceived their life situation to be negatively effected due to diabetes. Multivariate analysis showed that living alone had a negative effect on satisfaction in the physical, social and psychological life-domain. Higher levels of HbAr were associated with reported lower satisfaction within the physical and activity/behavioural lifedomain. The effect of the different background characteristics on reported well-being showed no consistent pattern. These findings indicate that the majority of patients in this study experienced a satisfactory quality of life despite living with a chronic illness such as diabetes.
Key words: Quality of life; Type 1 diabetes
Introduction
Type 1 diabetes can affect many aspects of everyday life due to the need to carry out appropriate self-care behaviour including regular inCorrespondence to: Berit Rokne Hanestad, Department of Public Health and Primary Health Care, Division for Nursing Science, Ulriksdal 8c, 5009 Bergen, Norway.
sulin injections, blood glucose monitoring and dietary control which all can affect both short and long-term health and well-being. Because of the complex and possibly demanding regimen due to the disease, living with diabetes needs to be considered in a psychosocial context [l-3]. However. reviews of the behavioural and psychosocial literature have found no evidence for a constellation of psychosocial or psychiatric features or of a
140
personality type specific to diabetes [4,5]. However, the stresses invoked by the diagnoses of any chronic disease and the accompanying possibility for psychological dysfunction have been described [6]. Holmes [7] states that adaptation to each phase of diabetes is determined by the individual’s current circumstances and the emotions and perceptions these can evoke from past experience. Patients’ subjective feelings with respect to the quality of their lives whilst coping with a chronic disease are becoming recognized as important factors in the planning and evaluation of treatment strategies. This has resulted in quality of life being increasingly recognized as an important outcome in clinical research in addition to the more traditional, biomedical measures [8]. Quality of life is concerned with the experience of the individual’s life situation either in general or in relation to different life-domains including physical status and functional abilities, psychological status and wellbeing and social interactions [9-221. As a consequence, the first aim of the present study was to describe how people with type 1 diabetes experienced their quality of life. In addition, it is also important to identify if specific patient characteristics can predict the quality of life experienced. Therefore the second aim of the present study was to examine the effect of the background characteristics sex, age, social status, education, disease duration, HbA,, regimen and the frequency of complications on self-reported quality of life.
Study Group
Three hundred and nineteen people with type 1 diabetes attending the diabetes clinic at the University Hospital of Bergen were sent a letter prior to their next clinic appointment inviting them to participate in the study. This group represents those with consecutive appointments at the diabetes clinic over a period of 3 months. Of these, 25 (8%) failed to keep their clinic appointment and 24 (8%) either failed to receive a questionnaire or were excluded from the study because they had a disease duration of less than 6 months,
had type 2 diabetes, blindness or other diseases. Of the 270 patients eligible for inclusion in the study, 11 (4%) refused to participate and 12 (4%) failed to return their questionnaire. Thus, 247 (92%) patients participated in the study, representing approx. 50% of all the regular attenders with type 1 diabetes.
Methods Materials and procedure
The quality of life was assessed using the quality of life package developed by Hornquist [ 15,211. Hiirnquist’s conceptualization of the quality of life is based on both his own research and findings of other researchers [ 11,15,21,23,24]. Hiirnquist defines quality of life as recognized need and functional satisfaction within a number of fundamental life domains, with special emphasis on we&being. The quality of life concept has been operationalized to evaluate the following domains: (1) physical covering overall bodily health and specific sickness impact; (2) psychological covering satisfaction with life, well-being in general and intellectual functioning; (3) social covering social contact in general as well as specifically relating to family and sexual life; (4) behavioural/activity covering capacity for self care, work and mobility; (5) structural covering religious dimension; (6) material covering the individual’s personal economic status. It is primarily the individual’s own perception of satisfaction of life that determines quality of life. Each of the items in the life-domains has seven response alternatives with scores on single items ranging from -3 to +3. A sum score is calculated for each of the domains, with higher scores indicating more satisfaction. The life-domains consist of a different number of items, thus resulting in different maximum scores. The well-being rating, which is complementary to the psychological life-domain, addresses 11 kinds of emotions or perceptions in more detail and is designed to reflect the individual’s selfconcept directly as well as indirectly through his/her social interactions. Some scales are more emotionally loaded, while others are more
141
behaviourally loaded. Each of the 11 well-being scales consist of ten statements. For each statement respondents choose whether the statement represents ‘fully’, ‘partially’ or ‘not at all’ their own life situation. Sum scores vary from 0 to 10 for each of the scales. For the scales of inferiority, loneliness, guilt, tension, anxiety, indolence and obsessive traits an optimal score is towards zero. For the scales sociability, basic mood, security and future orientation, an optimal score is 10. The reliability and validity of the instrument was examined by inspection of the internal consistency of the scales and the relationship between the various domains, respectively. The questionnaire was administered and completed at the diabetes clinic. A member of the research staff was available to give advice on completing the questionnaire. Clinical data
haemoglobin (HbAt) was Glycosylated measured during attendance at the clinic while the questionnaire was being completed. The normal range was 5.0-7.0%. Details of patient complications were based on case notes which were checked against patients’ self-reports.
TABLE
1
The 4 life-domains together with the number of items in each of the domains together with estimates of internal consistency (Cronbach’s alpha). Items
Life-domain Physical Bodily health Impact of diabetes on daily life/ diabetes symptoms Psychological Life satisfaction Cognition Social Social contacts in general Family life Sexual life Behaviour/Activity Possibilities for an active life Capacity for self-care behaviour Working capacity Basic habits
Alpha
6
0.49
6
0.86
5
0.71
11
0.69
The structural life-domain (1 item) is not included in the present paper. The material life-domain was considered less relevant for this study group and, consequently, was excluded.
Results Statistical analysis
Associations between demographic and clinical characteristics and satisfaction within each lifedomain and self reported well-being were analysed using forward stepwise multivariate linear regression analysis by means of the Biomedical Computer Programs (BMPD). TABLE
2
The well-being Main loading
rating
scales (each scale consists Self-concept
Behavioural
Tension Obsessive
of 10 items) and their internal Self-concept
independently
Scale
Emotional
Table 1 shows the different life-domains together with the number of items in each of the domains with estimates of internal consistency obtained in the present study. The components of the well-being scales and estimates of their internal consistency for this study are given in Table 2.
traits
Basic mood Indolence Future orientation Anxiety Security
consistency
(Cronbach’s
in social interaction
Alpha
Scale
Alpha
0.75 0.46
Sociability
0.79
0.78 0.81 0.80 0.79 0.82
Loneliness Inferiority Guilt
0.80 0.73 0.71
alpha)
142
The validity of the instrument was supported by the logical relationship between the different lifedomains and the well-being scales. Since the optimal score within the well-being scales was either either 0 or 10, the logical relationship between the scales was represented by both positive and negative correlation coefficients, i.e. a negative correlation between the anxiety and security wellbeing scales (r = -0.64) and a positive correlation between anxiety and tension (r = 0.72). The absolute values of the correlation coefficient ranged from -0.64 to 0.72 (P < 0.05). The demographic and clinical characteristics of the sample are shown in Table 3. Responses to individual items within the different life-domains are shown in Tables 4-7. It can be seen that, within the psychological life-domain, more than 80% of the patients reported their general well-being, opportunities for a meaningful life and satisfaction with life as a whole as very good/good/quite good. TABLE 3 Clinical and demographic characteristics of the patients studied Sex Male Female Age (years) Duration of diabetes (years) HbA, (“XI) Regimen l-2 injections/day Multi-injections Pump Unknown Social status Living alone Living with others Education Elementary/secondary school University (first and higher degrees) Retinopathy Yes No Neuropathy Yes No Nephropathy Yes No N (%), or mean f SD. (range).
138 (56) 109 (44) 34 f 13 (16-74) 13 f 9 (0.5-40) 9.7 + 2.4 (6-19) 72 (29) 169 (68) 1 (0.4) 5 (2) 41 (17) 205 (83) 188 (76) 59 (24) 59 (25) 180 (75) 19 (8) 222 (92) 17 (7) 222 (93)
Intellectual functioning was reported to be very good/good/quite good with respect to thinking clearly, memory and concentration by 89%, 81% and 78% of the sample, respectively. Over 85% of the sample reported having very good/good/quite good social contacts with others whilst 92% reported very good/good/quite good relationships with family/close friends. Seventytwo percent of the sample reported their sexual life as very good/good/quite good. For the activity/behavioural life-domain, 84% reported having very good/good/quite good opportunities for an active life and working capacity. Eighty nine percent of people perceived their ability to carry out self-care as very good/good/quite good. Regimen adherence was reported as being quite poor/poor/very poor by 3% of the people whilst, 69% reported their regimen adherence as very good/good/quite good. Behaviour in relation to exercise, smoking and self-monitoring of blood glucose was rated as quite bad/bad/very bad by 27%, 26% and 23% of the sample, respectively, whilst 83%, 78% and 68% rated their behaviour in relation to alcohol consumption, sleep and dietary intake as being very good/good/quite good, respectively. Ninety-two percent reported that injecting themselves was very easy/easy/quite easy. Examination of individual items within the physical life-domain showed that 45% of the people perceived that their life situation had deteriorated quite a lot as a result of having diabetes. Twenty-five percent reported their diabetes to be quite unstable/unstable/very unstable and 27% reported their blood glucose as being very high/high/quite high. Twenty-four percent reported frequency of hypoglycaemia as very often/often/quite often. However, 82% reported their awareness of hypoglycaemic symptoms as very good/good/quite good. Seventy-one percent of the sample perceived their physical health as being quite good/good/very good. Results of the multivariate linear regression analysis showing the effect of demographic and clinical variables are presented in Tables 8 and 9. Living alone had a negative effect on reported satisfaction within the physical, social and psychological life-domains. Increasing age was associated with less satisfaction in the
143
TABLE
4
Response
to the individual
Individual
items within
the psychological
items
life-domain
(percent)
Response Very good/good/ quite good (Score >O) n (%)
Neither good/ nor bad (Score = 0) n (“X1)
Quite bad/bad/ very bad (Score
My general well-being is My opportunities for a meaningful life is My satisfaction with life as a whole is
197 (80) 212 (86) 206 (84)
32 (13) 28 (11) 23 (9)
My concentration is My ability to think clearly
191 (78) 219 (89)
39 (16) 23 (9)
200 (81)
27 (II)
16 6 15 15 4 19
My memory
is
is
psychological life-domain and longer disease duration with less satisfaction within the social lifedomain. Reported lower satisfaction within the physical and activity/behavioural life-domains was associated with higher HbAi level. Multi-injection treatment was associated with greater satisfaction within the social life-domain. The occurrence of nephropathy had a negative effect on satisfaction within the physical life-domain However, neuropathy was associated with greater satisfaction within the social life-domain. Higher educational level was associated with increased sociability, safety and optimism for the future and less loneliness, obsessive trails and in-
TABLE
(7) (2) (6) (6) (2) (8)
dolence. Women reported more guilt and tension and perceived themselves more sociable than men. Living together with others was associated with less loneliness and indolence and more safety. Increasing age was associated with less guilt and optimism for the future and more obsessive traits. Higher level of HbA, was associated with more sociability and longer disease duration was associated with more indolence. Discussion Hornquist’s model and assessment package was chosen as its theoretical base reflects important
5
Responds
to items within
Individual
items
My social contact in My relationship with My relationship with friends is My sexual life is My relationship with
the social life-domain
(percent) Responses
general is others is my family/close
health
personnel
is
Very good/good/ quite good (Score >O) n (‘X)
Neither good nor bad (Score = 0) n (‘%J)
Quite bad/bad/ very bad (Score CO) n (I%,)
215 (87) 217 (88)
18 (7) 20 (8)
13 (5) 9 (4)
225 (92) 167 (72) 208 (85)
15 (6) 39 (17) 30 (12)
4 (2) 27 (12) 8 (3) -
144
TABLE
6
Responses
to items within
Individual
items
My My My My My My My My My To
the activity/bchavioural
(percent)
Responses
an active is is
capacity
activity alcohol smoking sleeping self-monitoring inject
“Response bResponse
life-domain
is
of blood
is
Very good/good/ quite good (Score >0) n (%I)
Neither good/ nor bad (Score = 0) n (‘I/,)
204 219 216
26 (11) 24 (IO) 23 68 53 14 26 27 33 64
126
(9) (28) (22) (30) (11) (11) (13) (26)
(5) (2) (7) (3) (11) (27)
15 (6) 62 (26) 21 (9) 56 (23) 5 (2)
for this item was very strong/strong/quite strong, neither strong nor weak, quite poor/poor/very for this item was very easy/easy/quite easy, neither easy nor difficult, quite diBicult/difBcult/very
aspects of the quality of life concept such as subjectivity and coverage. Additionally, the assessment package has been shown to be psychometrically satisfactory in terms of reliabiliTABLE
n (%)
13 4 8 8 26 66
14 (6)
alternative alternative
Quite bad/bad very bad (Score
ty, validity and sensitivity in previous studies [l&21,25]. In the present study reliability of data was examined using Cronbach’s alpha. Cronbach’s alpha
7
Responses
to items within
Individual
items
Diabetes
My blood
my life situation
is
glucose
is
I get hypos
When I am getting
My physical
health
life-domain
(percent) Responses
deteriorates
My diabetes
the physical
a hypo I feel it
is
poor. difftcult.
(score)
n (X)
Very much/much/quite much ( < 0) Neither much nor little (0) Quite little/little/very little (>0)
112 (45) 26 (I 1) 109 (44)
Very stable/stable/quite stable ( > 0) Neither stable nor unstable (0) Quite unstable/unstable/very unstable
163 (66) (< 0)
23 (9) 61 (25)
Very high/high/quite high ( < 0) Neither high nor low (0) Quite lowilow/very low (> 0)
66 (27) 149 (60) 32 (13)
Very often/often/quite often ( < 0) Neither often nor seldom (0) Quite seldom/seldom/very seldom ( > 0)
58 (24) 56 (23) 132 (54)
Very good/good/quite good ( > 0) Neither good nor bad (0) Quite bad/bad/very bad (< 0)
200 (82)
Very good/good/quite good ( > 0) Neither good nor bad (0) Quite bad/bad/very bad (
174 (71) 53 (21)
21 (9) 23 (9)
20 (8)
145
TABLE Results
8 of the stepwise multivariate
linear regression
analysis
for the different
life-domains
Life domain
Explanatory
factors
Social life-domain (n = 244)
Social status Disease duration Neuropathy Regimen
-2.59 -0.10 -2.64 1.38
-4.06,-1.12 -0.16,-0.03 -5.02,-0.27 0.19,2.58
Social status
6
Age
-2.26 -0.07
-4.00,-0.5
(n = 240)
Physical life-domain
(n = 230)
Social status HbA, Nephropathy
-1.89 -0.39 3.00
-3.33,-0.46 -0.62.-0.16 0.92,5.08
HbA,
-0.55
-0.97.-o.
/3, regression
coefftcient;
95% C.I., 95% confidence
interval;
R2, squared
provides an index of the homogenity of a group of items which are measuring a particular attribute and reflects the extent to which the individual items are intercorrelated. Its value range from 0 to 1.Owith an alpha of 1.O representing a perfect correlation between all items and a high level of item TABLE
9
Results
of the stepwise
multivariate
linear regression
Well-being
Explanatory
Future orientation (n = 236)
analysis
factors
multiple
R= 0.31
I -0.12,-0.01
Psychological life-domain
Activity/behavioural life-domain (n = 233)
P
95% C.I.
14
correlation
0.01 0.01
0.22
0.01
0.33
0.01
0.17
coefficient.
redundancy. The value of Cronbach’s alpha is dependent on both item intercorrelation as well as the number of items measuring the attribute. However values within the range of 0.70-0.85 are considered to be very satisfactory [26]. In the present study the internal consistency of the
for the well-being
scales P
R=
P
95% C.I.
Education Age
0.86 -0.02
0.30.1.43 -0.05,-0.01
0.25
Indolence (n = 232)
Social status Education Disease duration
0.96 -0.98 0.03
0.30.1.62 -1.51,-0.40 0.00,0.06
0.30
Safety (n = 238)
Social status Education
-0.95 0.72
-1.61,-0.29 0.15.1.30
0.01 0.01
0.23
Tension (n = 235)
Sex
0.73
0.27.1.18
0.20
Obsessive traits (n = 234)
Education Age
-0.63 0.02
- 1.02,-0.24 0.01.0.03
0.26
Guilt (n = 237)
Sex Age
0.56 -0.02
0.14,0.98 -0.03.0.00
0.01 0.04
0.22
Loneliness (n = 229)
Social status Education
0.83 -0.80
0.22.1.45 - 1.34,-0.25
0.01
0.25
Sociabitity (n = 232)
Sex Education HbA,
0.03 0.01
0.27
0, regression
coefficient;
95% C.I., 95% confidence
0.51 0.69 0.14 interval;
R2, squared
0.07, 0.96 0.17.1.21 0.05.0.23 multiple
correlation
coefficient.
146
psychological, social and behavioural/activity lifedomains was satisfactory. For ratings in the physical life-domain, however, the alpha coeffrcient was only 0.49 and may be because of the small number of items representing this domain. Additionally, even if the items concerning this lifedomain are measuring the underlying concept equally, they may be heterogeneous in their relationship to each other. The internal consistency of the well-being scales was satisfactory except for the scale measuring obsessive traits and because of this it has to be viewed with caution. Regarding the validity of the scales, the intercorrelations obtained in the present study support the validation reported in previous studies [ 15,2 1,251. This present study is based on self report measures which are subject to a number of errors of measurement including response style, idealization and resignation [19,27]. However, one of the benefits of self-reported quality of life is that it provides information of the patient’s own experience in addition to the more traditional biomedical measures [8]. Studies in which the patients rated quality of life, when compared to those of the physician and nurse, have shown only weak associations, indicating that it is the patient who is best able to express his own feelings [28,29]. With respect to the items within the activity/ behavioural life-domain, more than 80% of the sample reported that they felt fairly satisfied with their opportunities for an active life as well as capacity for self-care and work. However, despite this twenty five percent of the sample reported that their behaviour in relation to activity, smoking and self monitoring of blood glucose was quite bad/bad/very bad. Self injection was reported to be easy for the majority of the sample. These results from the present study indicating that life-style recommendations are more difficult to adhere to than carrying out insulin injections are in accordance with other studies [30-321. The results within the physical life-domain showing that 71% of the sample reported their physical health in a positive manner indicating that perception of being in good health is not contradictory with having a chronic disease. This is in accordance with the findings from other studies [29,33]. However, almost twenty-five percent of
the sample found their diabetes to be unstable and their blood glucose too high. This group might represent an at risk group with respect to longterm complications because of the association between poor metabolic control and long term complications [34-361. Hypoglycaemia is a common problem in patients with type 1 diabetes [37]. Hypoglycaemic episodes were frequently experienced by almost twenty-five percent of the sample, with nine percent reporting that they were unable to recognize symptoms of hypoglycaemia. This is an important finding as failure to recognize symptoms of hypoglycaemia can result in a life threatening condition. However, it is difficult to determine accurately the frequency of hypoglycaemia, particularly mild or moderate episodes, when self managed or when episodes are nocturnal. Severe hypoglycaemia that requires assistance from others has been reported to occur in 10% of patients per annum [37]. Further analysis within the physical life-domain showed that 44% of the sample perceived their disease to be affecting their life situation in a negative way. Therefore, it was surprising that, despite this, the majority of the sample were fairly satisfied with the psychosocial aspects of their lives. This finding may be due to the items within the psychological and social lifedomain being non-disease specific and that the responses were reactions to factors other than diabetes. This is a positive finding indicating that living with a chronic disease is not necessarily associated with reduced quality of life experience [29,33]. One might ask the question if these results are cultural and/or treatment specific. The finding that a large proportion of the sample were satisfied with their lives in spite of diabetes is in accordance with other studies performed in countries other than Norway indicating that this is not a specific Norwegian phenomenon [38,39]. Of course the positive result in the present study may reflect that the patients visiting the diabetes clinic at the hospital in Bergen are receiving a satisfactory treatment with regard to continuous education and counselling. With onset of diabetes the patients are hospitalized for one week for examination and education and thereafter the patients are visiting the diabetes clinic once or twice per year or more frequently depending on the needs of
147
the patients. The main elements of the continuing care are physical examination, i.e. weight and blood pressure, laboratory tests, i.e. HbAi and management plan including adherence to all aspects of self-care and psychological adjustment. To what degree the diabetes treatment and care are reflected in these results is impossible to identify. In any case these results indicate for the health personnel working at the diabetes clinic that the majority of their patients are satisfied with their lives irrespective of how much their satisfaction is dependent on treatment and care. This information is especially valuable to deliver to newly diagnosed patients showing them that living with diabetes is not necessarily a contradiction to living a good life. In this study no comparative data was obtained for a normal population or other chronic illness patients. As a result, it is not possible to determine whether patients with diabetes differ from other populations with regard to their level of quality of life. However a study comprising 758 patients each of whom had one of six different chronic illnesses (arthritis, diabetes, cancer, renal disease, dermatologic disorder or depression) found that five of the groups did not differ significantly from one another or from the general public, but all had significantly higher scores for psychological status when compared with the sixth group, patients under treatment for depression [33]. Cassileth et al. [33] state that these results indicate that physically ill patients remain psychologically intact and similar in level of mental health to the general public. Effects of background variables on the different life-domains showed that living alone was associated with less satisfaction within the physical, social and psychological life-domain. The effect of social support in relation to quality of life is described elsewhere [3,29,40,41]. In this study, lower HbA, levels were associated with higher satisfaction within the physical and activityibehavioural life-domains. This might be due to the items within these life-domains reflecting disease related aspects such as blood glucose level and self-care behaviour. However, no relationship was found between HbA, and the psychological and social life-domains, A further analysis of the
association between HbA, and quality of life is described elsewhere [4l].The finding that people using multi-injection regimen were more satisfied within the social life-domain might indicate that this regimen may permit the individual to live a more flexible life-style. Hiirnquist et al. [43] found that multi-injection treatment contributes to a better quality of life. Regarding reported complications, nephropathy was negatively associated with satisfaction within the physical life-domain while neuropathy was positively associated with the social life-domain. It is surprising that complications in general did not negatively effect quality of life because of the possible implications on daily life etc. However, in this study the severity of complications was not determined and although the findings reported here indicates that the presence of complications did not adversely affect quality of life, no firm conclusion can be drawn. Although longer disease duration was associated with decreased satisfaction within the social lifedomain, disease duration was not negatively associated with satisfaction within the other lifedomains. However, increasing age was associated with less satisfaction within the psychological lifedomain. Whether these results are due to ageing in general or specifically to having diabetes is difficult to determine. For the well-being scales no consistent pattern in the effects of the variables was found. With regard to the demographic characteristics educational level seemed to be of most importance and was found to be positively associated with future orientation and sociability and negatively associated with obsessive traits, indolence, loneliness and safety. Apart from the positive association between HbA, and sociability and disease duration and indolence, respectively, disease related variables, i.e. complications and regimen explained little of the variance. Despite the logical and significant associations between the background characteristics and the life-domain and well-being scales, it is not possible to identify a pattern in which one or more variables are of specific importance in reported quality of life. The explained variance of the independent variables on the different life-domains and well-being scales was not high. Within the lifedomains, the explained variance ranged from 17 to
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33%, with the lowest explained variance within the activity/behavioural life-domain and the highest within the physical life-domain,
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A review
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[ 111. Abbey and Andrews
[40] suggested in their model that internal control, social support and performance resulted in increased life quality, whereas stress and depression have the reverse effect. Kevin McNeil [44] reported that second-order factor analysis on a variety of quality of life measures repeatedly isolated a main factor which supports other findings by showing a high intercorrelation between measurements of quality of life and psychosocial aspects including personality, self-esteem and depression, indicating that these scales are measuring something similar. Further studies need to analyse the characteristic of quality of life. If quality of life is a stable personality characteristic this will influence the effects of different interventions in treatment and care. Acknowledgements
This study has been financially supported by the Norwegian Nurses Association, the Norwegian Diabetes Association and the Norwegian Council for Science and the Humanities. I am indebted to Dr. Fil Ulla Qvarnstr@n, Jan Olof Hornquist and Dr. Med. Sylvi Aanderud for their support and advice and to the nursing staff at the Department of Medicine at Haukeland Hospital in Bergen for their cooperation and goodwill.
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