Literature review

The following databases were searched for this literature review: ERIC, Medline, HealthStar, AIDSLine and Cancerlit.

Search terms included alone and in combination: continuity of care, continuum of care, hospital, terminal care, palliative care, patient-centered care, physician-patient relations, survey, and questionnaire.

THE MULTIPLE DIMENSIONS OF CONTINUITY

The term continuity of care, as used in the health care literature, is multidimensional (Starfield 1980, Wall 1981, Fletcher 1984, Ruane 1987). It has been used to describe a great variety of relationships between patients and the delivery of health care--availability of information, availability or constancy of clinician, a usual source of care, follow-up appointment keeping, and the goal of seamlessness in transitions from one setting to another. The latter is also called the continuum of care. In the hospital setting, continuity seems to be closely related to coordination--knowing who is in charge and communicating that information to the patient (Gerteis 1993) and who, if anyone has assumed ongoing responsibility for the care of a patient throughout an episode of illness, which has been called an attitudinal contract (Banahan 1981).

Fletcher et al (1984) distinguish between coordination as “the degree to which various components of care bear a useful relation to each other” and continuity as “the existence of some thread-- individual, practitioner, group, or medical record--that bind together episodes of care” (p. 409) and notes that they are not easily separable and often used to define one another.

Record Continuity

In ambulatory care, continuity is sometimes used to refer to patient record or information continuity--that is, whether information about a patient's history, visits, tests, allergies, medications, and preferences are available to all clinicians who care for the patient. Such continuity might be achieved by having a single medical record or by having access to clinical databases that contain information linked to the patient. An example of a survey question tapping this dimension of continuity would be, "Do your doctors have all the information about you that is important to your care?"

Clinician Continuity

Clinician continuity can refer to the proportion of patient visits that are with a given "index" clinician who might be identified in a variety of ways, and a number of measures have been proposed to characterize it, including UPC (Breslau 1975), COC (Bice 1977), LICON (Steinwachs 1979), f (Ejlertsson 1984; k (Smedby 1986). Others have reported on their use (Erikkson 1983, Godkin 1981). An example of a survey question tapping patient experience would be "Do you usually see the same doctor at each clinic visit?"

The health educational literature refers to "continuity clinics" in which primary care residents are supposed to follow patients over time (Ellsbury 1987, Feltovich 1989, Rivo 1994). In the medical education literature, this use appears in family practice, general internal medicine, and pediatrics journals.

Both record and clinician continuity are used to explain continuity in the definition of primary care proposed by a 1996 IOM report, Primary Care: America’s Health in a New Era. In the pediatric literature clinician continuity is included in the description of a "medical home." The American Academy of Pediatrics (AAP 1992, p. 251) describes the “medical home” (with respect to care for infants, children, and adolescents) as: “accessible, continuous, comprehensive, family centered, coordinated, and compassionate”; “delivered or directed by well-trained physicians who are able to manage or facilitate essentially all aspects of pediatric care”; and involving physicians who “should be known to the child and family and able to develop a relationship of mutual responsibility and trust with them.”

In a similar vein, the recent nursing literature refers to continuity of nurses in hospital units and hospice (Saunders 1985, Taylor 1987, Kersten 1991, Addington-Hall 1992, Athlin 1993, Lipman 1994). I did not locate any comparable measures of achievement of continuity.

Site Continuity

Continuity of site is very commonly meant when patients are asked whether they have a "usual source of care" as opposed, for example, to unrelated emergency department and clinic visits (e.g., Hayward 1991, St. Peter 1992, Vivier 1995). Such a source of care might be a clinic in which they only rarely see anyone they know and would have no way of knowing if relevant information is available. Results of such studies of site continuity are reported as the level of continuity experienced by patients such as Medicaid recipients or patients with a given clinical condition.

Continuity also appears in the literature as synonymous with accessibility or availability (for example, "How available is your doctor when you need medical attention?" and with compliance, such as following post-hospital discharge instructions or follow-up appointment keeping (Hargraves 1993, Kiefe 1993).

The Continuum of Care

In the long-term care literature, continuity is used as a synonym for the continuum of care (Evashwick 1996, quoted from Evashwick 1987) which is defined as

. . . a client-oriented system composed of both services and integrating mechanisms that guides and tracks patients over time through a comprehensive array of health, mental health, and social services spanning all levels of intensity of care (p. 6). This literature, which tends to be primarily descriptive of the complex tasks of coordination (e.g., Tresch 1985, Conkling 1989, Afzal 1989, Athlin 1993, Barnes 1993, McMurchie 1993) has provided some estimates of patient satisfaction in achieving the goals of coordination.

Continuity as an Attitudinal Contract

Finally, continuity has been described as a "contract of attitudes” (Banahan 1981). A related idea, almost entirely absent from the literature I reviewed, is the sense of continuity that reflects patients’ understanding about who is in charge of their care; that is, who is responsible for decisions and for communicating information to the patient and his or her family. This person is referred to as the "cornerstone caregiver" in one paper from the U.K. (Woolley 1991). Although most of the literature of the 1980s focused on continuity in the ambulatory setting, most recently this notion has appeared as part of the literature on patient centered care (e.g., Sherer 1993, Bejciy-Spring 1994, Lee 995, McQueen 1995). Gerteis et al (1993) do not use the term continuity, but illustrate the task of integration and coordination of clinical systems by a principal caregiver using the Mayo Clinic's model of care in which

. . . all clinical responsibility. . . rests exclusively with the doctor to whom each patient is referred on the initial visit. Almost nothing is delegated. That one physician is the sole repository for all relevant clinical information and the only person responsible for communicating with the patient and family. The lines of authority and information flow are unequivocal" (p. 53).

If the previous uses of the term, continuity could be considered retrospective (to what extent has it occurred), the attitudinal contract--whether called coordination, integration, or continuity--could be considered concurrent and prospective. That is, it expresses the intent on the part of the caregivers and health system to provide personal accountability for clinical decisionmaking and communication with the patient and his or her family.

THE VALUE OF CONTINUITY

Why is continuity considered important to the quality of care, and what (if anything) do all these uses have in common? Which uses of the term are relevant to the care of terminally-ill patients? What instruments might provide information about the level of continuity achieved and the steps a hospital might take to improve it?

Record continuity is thought to improve outcomes of care by increasing clinicians' knowledge of relevant facts about a patient. Both mobility of patients and the numbers of people involved in their care have increased greatly over the last several decades. The amount of information generated is far more than can be kept in the memories of those practitioners. Accordingly, these facts are documented in the medical record, and knowledge of them is thought to improve the quality of care in at least two ways: first, by improving efficiency by preventing duplication and promoting follow-up of important clinical findings; and second, reducing possible harm by preventing inappropriate actions such as prescribing drugs that interact or compounds to which the patient is allergic or taking actions that the patient has expressly declined, such as cardiopulmonary resuscitation.

In this sense of the term, continuity is used to mean that all relevant information is available. In this sense, the term also refers to information shared among the practitioners caring for a patient, whether in the same institution, between institutions, or between care settings.

Within an organization, such continuity depends on data being up-to-date, accurate, retrievable, understood, and used. In transitions between settings of care, such continuity is at risk--of not being transferred, of being transferred but not read, of being read but misunderstood, of being understood but discounted. Even if all these events occur as intended, however, none of the above uses of continuity entails communication with the patient.

Clinician continuity is thought to be important, first because not all relevant information about a patient is included in the medical record. Some information may be outdated or wrong; other information is intentionally omitted or simply never recorded. Second, a clinician who has an ongoing relationship with a patient is thought to be able to recognize significant changes or patient reports, in part because of having a referent period (the patient as his or her own control). Affect and body language as compared to past patient visits may be as important to an astute practitioner as clinical findings in identifying a significant event.

Third, a continuous relationship is thought to promote trust which is a core part of the clinician- patient relationship and can itself be part of the healing process. The content of a given patient encounter is based on unspoken negotiation about topics to be discussed, questions to be asked, the amount of information to be given, and the time allowed. A sustained relationship of trust and mutual respect is thought to facilitate patients raising issues, divulging private information, or posing questions that might otherwise go unasked. Sustained relationships are said to be important not only to patients, but also to the clinicians, and to many represent a valued part of medical practice. Concerns have been voiced with increasing frequency about the possible effects of managed care on quality and trust between patients and clinicians. It might be that a continuing relationship between a patient and a clinician could counteract distrust about the degree to which the clinician will be her patient’s advocate.

This sense of continuity seems to imply information sharing. However, a mathematical measure of clinician continuity could document perfect continuity without elucidating anything about presence or degree of partnership between patient and practitioner. Further, the literature is devoid of any models or measures of continuity within a team practice, a model that is increasingly used in primary care and geriatric practices.

It should be also acknowledged that there are aspects of continuity that could lead to lower quality of care. For example, stereotyping a patient causes a practitioner to overlook important findings, where different clinicians might provide different perspectives and different expertise. Similarly, seeing a newly trained practitioner rather than aging with one might provide the benefit of recent research information and techniques that an older practitioner might not be aware of. Table 1 summarizes some possible advantages and disadvantages of clinician continuity.

Finally, achievement of continuity must always be a tradeoff with accessibility. No one can be available 24 hours a day, and a team of people who are known to the patient, or a practice organized to field urgent problems, can greatly increase accessibility, thought continuity may decline.

CONTINUITY AND IMPROVED OUTCOMES OF CARE

Various aspects of continuity have been identified by patients as important to them and have been shown to be independent predictors of satisfaction (Ware 1978, Murray 1988, Hill 1992, Casparie 1995, McCann 1991, Mansour 1995). Much of the patient satisfaction literature omits a definition or discussion of the model being tested however, and uses survey questions to define it operationally. That is, though the value of continuity was strongly supported, models of the effects of continuity or the lack of it--- its determinants, intervening variables and predicted relationship to intermediate outcomes such as appropriateness (Hjortdahl 1991) and to clinical outcomes, expectations, and patient ratings of care were scarce in my review of the literature.

Linking the degree of continuity, however defined, with improved clinical outcomes (e.g., for chronic problems, preventive care) has been reviewed by Starfield and others (Starfield 1986, 1992; IOM 1996). Starfield concludes that continuity of care is “associated with more indicated preventive care, better identification of patients’ psychosocial problems, fewer emergency hospitalizations, fewer hospitalizations in general, shorter lengths of stay, better compliance with appointments and taking of medications, and more timely care for problems” (Starfield 1986, p. 194). For example, Shear et al (1983) used pregnancy as a tracer condition to analyze the association between clinician continuity and the quality of ambulatory care. Utilizing a retrospective cohort study design, they examined two groups of pregnant women—one cared for in family practice centers and the other in obstetric clinics. The newborn infants of women in the family practice group, who had much higher clinician continuity, were of higher birthweight even after controlling for race, income, education, and parity of their mothers.

In another study, using a double-blind randomized trial of elderly men assigned to either a “provider-continuity group” or a “provider-discontinuity group,” Wasson et al (1984) found that patients in the continuity group had fewer emergency admissions and shorter hospital lengths of stay than those in the discontinuity group. These patients also viewed their providers as more knowledgeable, thorough, and interested in patient education. Billings and Teicholz (1990) reported that patients with a single individual whom they considered to be in charge of their care experienced much lower rates of preventable hospital admissions. It has also been suggested that continuity increases patient compliance.

USING MEASURES OF THE CONTINUITY OF CARE FOR THE TERMINALLY-ILL PATIENT TO ASSESS QUALITY OF CARE

Not all the dimensions of continuity are applicable to the hospital environment or to the last month of care, but they might be considered important to a health plan and to an integrated delivery system to understand patients' experience of care at earlier times in their illness. Figure 1 depicts the dimensions of continuity and settings of care described above. Any of these dimensions might be considered important to measure at different stages of a patient’s trajectory toward terminal care. In choosing measures of quality it will be important to determine first, what dimensions of continuity are the most important in the care of this population, and second, the objective of measuring continuity--how and by whom are the results intended to be used? For purposes of opening a discussion of measurement in this domain, I describe below the rationale for the approach I have taken in choosing among measures.

WHAT DIMENSIONS OF CONTINUITY?

For the terminally ill patient and his or her family, perhaps the most salient experiences in terms of continuity are (1) having confidence that relevant information is documented and accompanies the patient through transitions, especially within the hospital environment and (2) that someone is identified as the "integrationist"--of diagnostic test results, of decisions made and needing to be made, of presenting options-- so that the patient and his or her family are not burdened with having to do this themselves. Further, the "integrationist" represents continuity because of a commitment to "stay with" the patient and to be a final locus of communication with the patient and his or her family.

This dimension, however, is likely to be at odds with the usual organization of the tertiary care hospital, especially the academic medical center whose diffuse lines of accountability, especially across clinical services, is well known (see Gerteis 1993). Saunders and McCorkle (1985) pointed out that in both the medical model and the rehabilitative model of care “. . . no one within the health care sytem assumes primary responsibility for providing continuing care for the ill person and his support systems,”(p.373) and they argued for nurses to assume this role. Given that hospitals have not been organized to support this function (see Gerteis 1993, chapter 3), it is not surprising that literature regarding continuity in the hospital setting is sparse, and for terminally ill patients in hospitals, it is nonexistent. Saunders and McCorkle proposed a “living-dying model” of care--similar to the palliative care model--in which nurses would assume responsibility for facilitating collaboration and coordination of the multiple services being offered to patients with progressive cancer.

An otherwise useful paper by Matthews and Feinstein (1989) on hospitalized patients’ views of desired attributes of their physician does not describe whether patients were asked if they could identify that person or whether respondents to the survey included only those who were able to identify such a person. In their survey, a question labeled “coordination” of care does ask about patients’ satisfaction with their doctor in “keeping in touch with all the people involved in my care.” This was rated “very important” by 75.6 percent of respondents who gave it a rank of 8 out of 14 broad attributes of physician performance. One aspect of communication--discussion of findings of tests with the patient-- was rated “very important” by 83.2 percent of respondents and ranked number two. Cleary et al (1991) describe a national telephone survey which, though not specifically identifying continuity as a separate issue, found that 15 percent of hospital patients and 20 percent of patients in academic health center hospitals believed that no one was in charge of their care (see Gerteis 1993).

Apart from patient perceptions is the question of whether it is possible to identify in databases who the responsible physician is during a given hospital admission. Welch et al (1995) used Medicare data from the National Claims History System to determine who was the attending responsible for care during a given inpatient stay. When major surgical procedures occurred, the physician listed under the code “procedure physician” was often listed as the primary care attending physician, but they found that the listing of “attending” physician was reasonably accurate when the admission was medical only. It appears, then, that this database would provide a reasonable gold standard for comparison with the perceptions of Medicare patients.

In a paper addressing terminally ill patients’ perceptions of quality of care, Kristjanson (1986) elicited patients responses about the importance of various aspects of palliative care from terminally ill patients and their families. “One person co-ordinating the patient’s care” ranked 13 in frequency of patient mentions among 74 items and 16 among 77 items mentioned by caregivers in structured interviews in a hospital palliative care unit in Winnepeg.

PURPOSE OF MEASUREMENT

There is a major dichotomy in the purpose of quality measurement. On the one hand, a measure may be intended to be used internally by, for example, hospitals, hospices, health plans, and integrated delivery systems. On the other hand, it may be intended for external oversight to ensure minimal compliance or for contracting. For internal use, the sensitivity of the measures to changes in the organization of services, information systems, and their ability to provide useful information to managers and clinicians would be critical. Patient and proxy reports and measurement of continuity could both be useful in comparing sites of care and in pointing to problems needing further investigation.

Another possible use of the measure is to report on patient experience to external parties-- purchasers, policymakers, accreditors, and the like. In this case, summary reports and outcome measures linked to continuity might be most useful. I have reviewed measures using the assumption that both measures for internal use and external reporting would useful, but have focused in internal measures in the hope that, if valid and reliable, they might be “rolled up” for external reporting.

I recommend first the use of continuity in its concurrent and prospective sense of the "cornerstone caregiver" and second, the traditional notion of "record continuity," as most appropriate for a focus of development of a Toolkit for measuring end of life care and review possible instruments below. Measurement of the continuum of care is clearly important, but I have not found measures of it other than patient reports. Though such reports could certainly be the basis of comparison and guide patients’ and purchasers’ choice of plans, for example, they are not as likely in a brief instrument to provide the level of detail needed to improve performance. It must be acknowledged, however, that the evidence linking continuity of information with improved outcomes is tenuous.

RESPONSIVENESS TO INTERVENTIONS

My literature review yielded only three papers focusing on the results of interventions to improve continuity. Kibbe et al (1993) reported on the positive results of a continuous improvement effort to improve continuity in a family practice unit. Sella and MacLeod (1991) reported that continuity improved after introduction of primary nursing on four medical and surgical units in a tertiary care hospital. Jakobsson et al (1994) reported improved satisfaction with nursing care after major budget and staffing cutbacks in Swedish surgical clinics that necessitated reorganization and delivery of hospital care that, among other things, improved continuity in the nurse-patient relationship. However, none of the measures described below has information about the results of actions taken to improve continuity.

POSSIBLE MEASURES OF CONTINUITY FOR TOOLKIT

Table 1 summaries several measures of continuity--the Picker Commonwealth instrument, the McKusker 4-item measure (1984), the Smith-Falvo Patient Doctor Interaction Scale (PDIS), and the Chao patient perception instrument designed for family practice (1988). Each of the measures was designed for one site (hospital, home care, office practice). Only one (McCusker) was tested with terminally ill patients and their families, and it is too long to be practical in combination with other instruments assessing other aspects of care. No one instrument taps all the dimensions described earlier or both the perception of “who is in charge,” constancy across the continuum of care, and availability of relevant information. Face validity suggests that if validated, any might be used with proxies.

POTENTIAL INSTRUMENTS

Picker Commonwealth Instrument (1991) - is a self-administered single-item questionnaire.

McCusker 4-item Measure (1984) - is a 4-item interview-administered scale.

Smith-Falvo Patient Doctor Interaction Scale (PDIS) - is a 17-item self-administered scale.

Chao Patient Perception Instrument  (1988) - is a 32-item instrument which asks questions about the duration and type of relationship the patient had with his or her primary care physician.  For additional information on this instrument, contact Dr. Chao at jxc19@po.cwru.edu

Nursing Needs Assessment Instrument (1998) - is an interviewer-administered instrument which assesses cognitive/behavioral/emotional status, health status, functional status, finances, environmental factors in postdischarge care, anticipated skilled care requirements for discharge, and meeting continuing care needs based on chart review.

Table 1 Review of Potential Instruments Measuring Interpersonal Aspects of Continuity

1 Characteristics are reported for the entire scale, not continuity alone

2 Maps items in multidimensional space and converts to two-dimensional space

3 Response rate 66%, not anonymous so may have been a response bias

4 CT1+ When I get care for a new medical problem, they always check up on the problems I’ve had before.

CT2+ I see the same doctor just about every time I get medical care.

CT3- I hardly ever see the same doctor when I get medical care.

CT4- The medical problems I’ve had in the past are ignored when I get care for a new medical problem.

5 Good if correlation of an item with its hypothesized scale is higher than correlation with other scales.

6 Degree to which results correspond to results from other questions directed at similar attitude dimensions.

7 10.7% refused, majority because they were too sick. Self-administration could be a problem for terminally ill.

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Section prepared by Molla Donaldson

Updated 9/14/2000

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