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
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?"
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
Both record and clinician continuity are used to explain continuity in
the definition of primary care proposed by a 1996 IOM report, Primary
Care: Americas 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.
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
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"
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 patients
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
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
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 womenone 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 patients
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
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 patients 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
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
RESPONSIVENESS TO INTERVENTIONS
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.
Commonwealth Instrument (1991) - is a self-administered single-item
Measure (1984) - is a 4-item interview-administered scale.
Doctor Interaction Scale (PDIS) - is a 17-item self-administered scale.
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 email@example.com
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
||Chronically and terminally ill patients in new home
||family practice center patients
||suburban family practice
|Type of Instrument
||Survey, multidimensional scaling measure2
||Survey and chart review
||Face to face, trained interviewer
||Paper and pencil at visit or mail back
||Mail survey3 and chart audit
||Was there one particular doctor who was in charge
of your care at the hospital? (N.B. 22.6% said "no")
||see conceptual model4
||see conceptual model
||23 statements describing ongoing patient-physician
relationship on 5 dimensions of continuity: chronological, geographic,
interdisciplinary, interpersonal, and informational
||Yes, No, Not sure
||Likert scale, direct
||5 point scale: Definitely true, Mostly true, Uncertain,
Mostly false, Definitely false
||Single question in patient-centered report of the
experience of hospitalization
||4 question scale
||Unclear how continuity is conceptualized beyond rapportdimensions
of satisfaction; does intention to return to practice = continuity?
||All items related to aspects of doctor-patient relationship
||Internal consistency tested and moderate with Cronbachs
alpha = .50 (67 patients) and .53 (84 caretakers)
||Internal consistency .85; test-retest coefficient
||Cronbachs alpha = .86 but no significant correlation
between survey measures of continuity and chart audit measures of
continuity (UPC, r=.01, UPC, r=.13)
||Discriminant validity5 tested better for
CT1 and CT3 than CT2 and CT4 which overlapped with other scales;
concluded that only first was a good subscale. Convergent validity6
testedtrend in right direction but numbers too small
||Discriminant validity reported for different subscales.
Convergent validity tested with the Medical Interview Satisfaction
Survey; correlation .74 (p<.0001). Concurrent validity tested
as correlation of item to intention to switch doctors r=.73. Pearson
and Filon t-test on different subscales
||Reviewed by a group of board certified family practitioners
|Used as an outcome measure?
||Those in worst health reported most problems (interaction
with income) but R2 <9%
||Multiple regression with satisfaction as dependent
variable: F=58.8, R2= using PC variables
||Good, may be hard to translate into a clinically relevant
|Respondent burden (for terminally ill patients or
||Appears to be low enough to answer; entire instrument
takes about 25 minutes for less ill patients7
|Alternative forms of administration
||Yes, one item
||Yes, 2 items
||Applicable to all hospitalized patients?
||Applicable to all hospitalized patients?
|Used for terminal care?
|Responsive to intervention?
|Tested with proxies?
||Scale used with patients and caretakers in one site,
not used post bereavement
are reported for the entire scale, not continuity alone
items in multidimensional space and converts to two-dimensional space
rate 66%, not anonymous so may have been a response bias
When I get care for a new medical problem, they always check up on the
problems Ive had before.
I see the same doctor just about every time I get medical care.
I hardly ever see the same doctor when I get medical care.
The medical problems Ive had in the past are ignored when I get
care for a new medical problem.
if correlation of an item with its hypothesized scale is higher than correlation
with other scales.
to which results correspond to results from other questions directed at
similar attitude dimensions.
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