Family Practice Vol. 20, No. 5, 503-507
© Oxford University Press 2003
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Familiarity breeds neglect? Unanticipated benefits of discontinuous primary care
National Centre for Epidemiology and Population Health, The Australian National University, Canberra ACT 0200, Australia; E-mail: dorothy.broom{at}anu.edu.au
Broom DH. Familiarity breeds neglect? Unanticipated benefits of discontinuous primary care. Family Practice 2003; 20: 503–507.
Received 25 November 2002; Revised 8 April 2003; Accepted 19 May 2003.
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Abstract |
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Background. Continuity of medical care is generally considered to be beneficial to patients.
Objective. The aim of this study was to investigate the possibility that familiarity with patients may sometimes discourage case finding.
Methods. Extensive qualitative interviews were carried out with a sample of Australian adults with type 2 diabetes, focusing in particular on their experience of diagnosis.
Results. Interviews were conducted with 119 participants, 75% of whom supplied sufficient information to enable the coding of whether diagnosis occurred under circumstances of discontinuity. Half of all participants (two-thirds of the coded subsample) had a diagnosis that could be categorized as resulting from discontinuous primary care: hospital admission, change of doctor, patient initiative and/or diabetic emergency.
Conclusion. The same circumstances that enhance the management of chronic disease can at times hinder its diagnosis. Primary care service providers may need to instigate more active methods of case finding in order to avoid this paradoxical effect of familiarity with the patient.
Keywords. Diabetes, diagnosis, primary care.
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Introduction |
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Continuity of medical care has been the object of considerable inquiry. Both common sense and empirical research suggest that patients prefer to see the same doctor from one visit to the next and, in some respects, ‘compliance’ with medical instructions is improved when the doctor and patient know one another. Continuity in primary care may be particularly important in diminishing reliance on secondary and tertiary medical care1,2 because it allows the early detection and treatment of potentially serious illness, and because it can improve the management of chronic conditions such as hypertension or diabetes, thus postponing and reducing the incidence of complications.3 However, several studies show little or no effect from this kind of continuity, and for some outcomes there have been counter-intuitive findings.4 Most of the debate about continuity has been limited to whether there are psychological or clinical benefits to seeing the same doctor over time.5
The study reported here investigated adults with type 2 diabetes. The focus of the research was on the personal and social experiences of diabetes. While the project was not originally designed to investigate questions of continuity of care, preliminary inspection of the patient narratives of diagnosis suggested that the rich, detailed database we had assembled could usefully be interro-gated for this theme. The findings reported here revolve around the diagnosis of type 2 diabetes in general practice.
Early detection of diabetes is recognized to be significant in successful long-term management because it permits the instigation of medical and ‘lifestyle’ interventions before the onset of serious complications,6 and early detection is a key goal of Australia’s current National Diabetes Strategy.7 Since the overwhelming majority of the population see a GP at least annually, most efforts to improve early detection rest with GPs. For example, the National Integrated Diabetes Program and the National Diabetes Strategy 2000–2004 both place general practice at the centre of Australia’s effort to detect and control the diabetes burden of disease.
British research has considered the potential value of screening general practice populations for type 2 diabetes.6,8 One major study showed that such screening would be costly in terms of both time and money, and the authors recommended targeting ‘patients with multiple risk factors’.9 A checklist for Australian GPs suggests screening all patients over 65, as well as those who have two or more listed risk factors.10 The manual Diabetes Management in General Practice11 (a joint publication of Diabetes Australia and the Royal Australian College of General Practitioners) lists those ‘at high risk for undiagnosed type 2 diabetes’, stipulates the criteria for diagnosis and advises ‘periodic testing.’ We investigated the effects of continuity of GP care on the early detection of diabetes in everyday practice.
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Methods |
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Detailed interviews were conducted with 119 adult diabetics (sometimes with family members present) in three locations in a south-eastern Australian state (two rural towns and one urban area). The unstructured interviews invited participants to tell the story of their diabetes from diagnosis to the present day. Interviews were tape recorded and transcribed verbatim. The transcripts were entered into The Ethnograph program for the analysis of text-based data and coded thematically. In the majority of these discussions, respondents included a narrative of how they found out that they had diabetes, and it is these stories on which we concentrate here. Participants were recruited initially through local non-government diabetes associations, through notices placed in chemist shops, and through snowball sampling.
This analysis concerns people’s descriptions of the processes surrounding their diagnosis. We do not address continuity in their general health care, only in the events leading to the diagnosis of their diabetes. The literature contains numerous definitions of continuity of care,12,13 but we were interested specifically in continuity as it relates to diagnosis. Hence, discontinuity in diagnostic care was defined as occurring when the diagnosis was made by someone other than the respondents’ usual GP, or when someone else (not the GP) took the initiative that led to the diagnosis. [This definition is roughly congruent with relational continuity (an ongoing relationship between patient and provider), but it contains elements of other definitions. Ours is a wide definition that may exaggerate the detection of discontinuity; however, since the aim is to identify a potential dynamic rather than to estimate a population prevalence, the possibility is of limited concern.]
These circumstances are grouped into four rough categories: (i) diagnosis as a result of hospital admission (due to heart attack, accident, surgery or other significant illness); (ii) diagnosis when seeing a doctor other than their usual GP (e.g. while away from home, usual doctor temporarily not available); (iii) diagnosis resulting from patient persistence, concern expressed by friend or family member, or suggestion from another service provider (not doctor); or (iv) diagnosis following a diabetic emergency.
Although we distinguish these four circumstances of discontinuity, the boundaries between the categories are permeable. For example, a participant who was persistent but unsuccessful in raising concerns with their usual GP might decide to see another doctor (categories ii and iii above). Indeed, there was considerable variation in doctor’s reactions to patients who were vigilant and tenacious. Some were quick to appreciate the patient’s concern and instigated investigations, thus re-establishing continuity of care when it might otherwise have been threatened by a breakdown of communication. Nevertheless, if a diagnosis required the patient’s persistence, it is coded here as discontinuity in diagnosis.
In contrast, transcripts were coded as indicating that diagnosis resulted from continuity of care when doctors performed regular or opportunistic screening (e.g. when a patient presented for renewal of a prescription), when the GP incorporated testing into their routine care of the patient, or when the person attended with symptoms of diabetes for which the doctor promptly ordered tests.
Sample
The people we interviewed are generally experienced at dealing with diabetes; on average (median) they had received their diagnosis 10 or more years ago, although a few were diagnosed within 12 months of our interview. Three of the participants have type 1 diabetes, but the remainder have type 2 diabetes (the focus of the study). Their ages range from 20 to 90 years (mean 64). Equal proportions of males and females participated. They included two indigenous people who are peer educators working with an Aboriginal Health Worker. Fewer than 10% of participants come from non-English speaking backgrounds, and all but two could speak English reasonably well. Three-quarters of the respondents were married at the time of the interview, and another 12% were widowed. The sexes were demographically similar except that more women than men were widowed, and nine women (but no men) identified their occupation as ‘home duties’. Slightly under a third of the sample defined themselves as ‘retired’ (equal proportions of men and women), while those still in paid work are scattered over a variety of blue collar, white collar and professional occupations.
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Results |
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Of 119 participants, 89 (74%) of them supplied narratives of diagnosis that contained sufficient information to permit a confident coding regarding continuity or discontinuity. Of those coded, 65% (n = 58) were classified as having their diabetes diagnosed in circumstances of discontinuity. Another 30 people’s narratives did not contain enough information about diagnosis to permit coding on this point, and their diagnosis may have been so routine that it did not warrant comment. If all 30 were diagnosed in circumstances of continuity, our overall sample would be equally divided between those whose diagnosis was characterized by continuity versus discontinuity, i.e. half of the total sample would have been diagnosed in circumstances that deviated from routine primary care in some respect. Proportionally more males (74%, n = 34) than females (56%, n = 24) had discontinuity in the care leading to their diagnosis (P < 0.05), as might be anticipated on the basis of women’s higher rates of consulting.
Turning in more detail to those whose diagnosis involved discontinuity, quite often (21% of the coded subsample, n = 19), the diagnosis was incidental to an admission to hospital—either the Accident and Emergency Department (e.g. as a result of an accident or heart attack) or a planned admission (such as a hernia repair, varicose veins or joint replacement). It may be argued that screening for diabetes upon hospital admission does not constitute discontinuity since it is routine. However, we have defined it in this way because it often indicates that diagnosis had not taken place as early as it might, and therefore represents a shortfall in regular primary care. In some instances (especially emergency admissions), the patient may not have attended a GP for months or even years. (We lack the data to investigate this possibility.) However, in the case of elective surgery, patients would generally have seen their GP or specialist in the weeks before admission, yet their diabetes was not detected until they went into hospital.
Another common trajectory to diagnosis involved an initiative by the participant themselves, a friend, family member or other (non-doctor) service provider. These kinds of processes occurred in 26% of cases (n = 23). Several spouses thought that the person might have diabetes and should be checked, and Arthur’s neighbour noticed persistent sores on his ankles and wondered whether he had diabetes. Two people visited optometrists who referred them for medical attention following optical examinations. A number of patients received repeated reassurances from their doctors, but remained concerned, and persisted in presenting and asking questions. Doctors might respond very readily to the patient’s initiative, but not always. For example, York had a long history of health problems causing work absences and frequent medical consultations.
"I was forever going to the doctor. And he gave me this and gave me that, all the different medications, never once testing me until eventually I said, I want to go into Sydney and get a check on everything. I said, I want a whole check."
People who had this much difficulty getting a hearing from their doctor often decided to change doctors. For example, when Sam complained of polyuria, his doctor told him he was drinking too much coffee. He visited several doctors before finding one who took him seriously; this doctor felt sure Sam had diabetes and ordered tests. Vincent was told he had a virus but said "Look I’m sorry, but I know my body. I really don’t think it’s a virus. There’s something wrong with me." When he remained ill, he weighed himself and discovered that he had lost several kilograms over 3 days. "I couldn’t believe it. So on the Monday I went and saw another doctor and I told him the story . . . He said, from what you’ve told me I think you might have a sugar problem. You might have diabetes."
A few study participants were alerted to their diabetes when they took the opportunity to have a finger prick test at a Diabetes Australia stall in a community location such as a shopping mall or club. Whether these schemes are cost effective or not, they give people access to a preliminary test without the necessity to make a medical appointment. Because many respondents commented that they thought they had had diabetes for some time before they were diagnosed, these kinds of less formal arrangements may be valuable. However, one man we interviewed was initially diagnosed in such circumstances, but failed to take any remedial action or consult a doctor for several years after he was told that he probably had diabetes and encouraged to seek medical attention. His tardiness may not be the result only of the circumstances of his diagnosis, because other people confessed to similar delays in follow-up after diagnosis by a doctor.
Even those seeing their usual GP regularly were not always aware of the significance of the diagnosis. At least two people were under the impression that their diabetes had gone away once their blood sugar levels declined, and that misunderstanding was not corrected until they changed doctors for some reason. For example, when Helen went to a new doctor, he noticed the old result on her file and insisted on ordering tests that her previous GP had not been doing. She was surprised to discover that she had not been cured, because her previous doctor had not mentioned her diabetes for several years even though she had been seeing him. One is left wondering what Helen’s doctor told her, and why did he not conduct periodic tests following the initial diagnosis.
In three instances, the diagnosis came about as a result of a diabetes-related collapse and emergency admission to hospital. These are in some ways the most worrying cases, and fortunately they are unusual. Mark’s crisis had a beneficial effect for his twin brother Neville, both of whom go to the same GP. As a result of Mark’s emergency, the doctor subsequently monitored Neville closely, leading to the early detection of his diabetes (2 years later).
Surprisingly frequently (15%, n = 13), diagnosis resulted from some change in the general practice from which the person usually sought care. For example, people might have been attending the same GP for many years, but were only diagnosed when their regular doctor was unavailable for some reason (booked up, away or retired). Gail described her experience:
"We had a change of doctors . . . Our doctor was away and we had a new doctor come in, and she said to me, have you had a pap smear and have you had this and have you have that, and I said no, and she sent me and gave me a thorough overhaul. And she was the one that picked it up."
Different doctors may have different criteria for diagnosis, so going to someone else may result in a new definition of the existing situation. Jane’s usual GP had been doing occasional blood tests
"because diabetes is in the family and I was definitely in the category...And even though the readings were 6.5 and 6.8, the doctor I was going to wasn’t concerned about it; but when I went to this other doctor (because I couldn’t get into the normal doctor that I usually went to) he wasn’t happy with the 6.8 reading, and he decided that maybe a glucose tolerance test was the way to go. And that’s when they discovered I actually did have diabetes."
Before seeing the new doctor, she had had two episodes she described as ‘attacks’, and had tried to get an appointment to see her usual GP.
"I explained what the problem was and he wouldn’t fit me and. And that’s when I rang this other place, and they said I couldn’t get in until 6:15 p.m., but I explained what the problem was, and they said come straight down and we will fit you in."
About one-third of coded respondents could clearly be classified as diagnosed under circumstances of primary care continuity. Their doctors often had regular schedules for routine examination and screening, or took the opportunity to order tests when they came to renew a prescription, or presented because of unrelated symptoms. Doctors also included tests for diabetes when they monitored other conditions (existing or potential) such as prostate disease or high cholesterol. These approaches conform to best practice guidelines.
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Discussion and conclusions |
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TopAbstractIntroductionMethodsResultsDiscussion and conclusionsReferences |
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The debate on the value of continuity has tended to revolve around whether it delivers improvements in ongoing care, and whether such improvements—if they can be documented—warrant the additional costs to patients and to the health care system.
Continuity of care is, however, no guarantee that significant chronic disease will be diagnosed early, as is evident from the experience of half our participants. Several elements may contribute to this finding. Not all GPs are aware of current diagnostic criteria which may be substantially changed from those prevailing when many of them were originally trained. Furthermore, while early detection of diabetes is important, doctors in primary care, especially in very busy practices, face multiple competing demands on their time and attention. Consequently, even such a worthwhile priority may be overlooked at times.
However, these issues are potentially relevant to any GP, not only a person’s usual doctor. Hence, we propose an additional possibility: that knowing a patient can lead doctors to assume that they are already aware of everything significant about their patient, and thus to neglect important investigations. The fact that 15% of our respondents were diagnosed when they went to a new GP suggests that at least sometimes continuity of care itself may discourage case finding.
This should not be taken as an argument in favour of discontinuity. An American study reports that chronic diseases (including diabetes) are more likely to be recognized in adults who have a regular source of care14 and, sometimes, discontinuity can be extremely dangerous. A few participants told stories of ignoring a diagnosis for many years, with subsequent deterioration. In retrospect, some described themselves as having denied that they had diabetes. Several used the phrase, ‘I didn’t want to know.’ Such denial may have been linked to very infrequent consultations or seeing several different doctors, but others were attending their GP regularly, and the doctor did not intervene. Because initiatives to improve case finding are concentrated on GPs, doctors must consider why they may be missing diabetes in some of their patients.
Our study suggests that despite the manifest advantages of continuity, there may be at least one potential defect of seeing the same GP from visit to visit, namely that the doctor’s familiarity with the patient can lead to diminished medical vigilance, thus delaying the diagnosis of one of Australia’s most common and serious chronic conditions. Paradoxically, the very relationship that can improve the quality of disease management can also postpone its detection. To minimize this unanticipated consequence of continuity, GPs may need to devise and implement systems that prompt the periodic recall and review of their regular patients.
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Acknowledgments |
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I am grateful to Julia Byford, Anne Hirst, Angela Lehmann and Bruce Missingham for assistance with data collection, and to Julie Clark, Emily Maldon and Anna Olsen for help with coding. Andrea Whittaker was involved with aspects of study design and data collection, and gave helpful suggestions on an earlier draft. George Freeman supplied insightful questions and comments which assisted substantially in improving this manuscript. This research was funded by the New South Wales Department of Health and the General Practice Evaluation Program (Commonwealth Department of Health and Ageing).
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