Interventions to improve continuity of care in the follow‐up of patients with cancer
Abstract
This is a protocol for a Cochrane Review (Intervention). The objectives are as follows:
1. To classify and describe the various interventions tested in the literature to improve continuity of care in the follow‐up of patients with cancer.
2. To determine the effectiveness of the tested interventions to improve continuity of follow‐up care.
Background
Recent estimates have measured significant increases in survival of patients diagnosed with cancer (Jemal 2007; Sant 2003), and advances in cancer control and the application of more effective treatment approaches should lead to further reduction in cancer death rates (Byers 1999). Along with these encouraging results come new challenges for cancer care providers; adults who report a history of cancer have higher levels of disability compared to the general population (Hewitt 2003) and an increased burden of illness, as shown by long periods of sick leave, inability to work, general perception of poor health, and need for help with daily activities (Yabroff 2004). In addition, cancer occurs predominantly in older persons, with a median age at diagnosis of 68 years, and the proportion of older persons with cancer is expected to increase dramatically over the next 50 years (Edwards 2002). Older long‐term cancer survivors have been shown to have higher rates of lung disease, diabetes, heart disease, arthritis, incontinence, chronic pain and obesity than comparable persons who have never had cancer (Keating 2005; Yancik 2001).
Care from the family physician is generally interrupted when patients with cancer come under the care of second‐line and third‐line health care professionals who may also manage the patient’s comorbid conditions (Oeffinger 2006). On completion of cancer treatment, patients are often discharged back to their primary care physician, who does not always have access to information about the patient prognosis, treatment plans, pain medication, possible side‐effects of treatments, complications related to the illness, and whether the transition from curative to palliative care has occurred (Barnes 2000; Dworkind 1999). That these patients often require treatment from multiple providers ‐‐ including surgeons, oncologists, primary care providers, nutritionists, psychologists and social workers, who are often located in multiple settings ‐‐ leads to fragmented and uncoordinated care (Earle 2006; Smith 1999). As a result, cancer survivorship has been associated with an increased likelihood of not receiving recommended care across a broad range of chronic medical conditions such as heart failure or diabetes, or recommended preventive services (Earle 2004). In addition, physicians and nurses often fail to detect patients' psychosocial needs (Hewitt 2007; Hopwood 2000; Passik 1998).
Description of the intervention
The Canadian Health Services Research Foundation commissioned a report to develop a common understanding of the concept of continuity of care and to recommend continuity measures for health system monitoring. To achieve this objective, published literature on continuity of care was reviewed and researchers, content experts, and Canadian policy makers were consulted. Continuity of care was then defined as how one patient experiences care over time as coherent and linked; continuity being the result of good information flow, good interpersonal skills, and good coordination of care (Reid 2002). The authors describe three types of continuity: namely, informational, relational and management continuity. For the purpose of the present review, we will thus focus our research to identifying interventions aiming to improve these three types of continuity: (1) informational continuity, which is the availability and use of information on prior events and circumstances to make current care appropriate; (2) relational continuity (also called longitudinality), which refers to an ongoing relationship between a patient and a provider; and (3) management continuity, which is the provision of timely and complementary services within a shared management plan (Reid 2002). Various types of barriers to continuity of cancer care have been identified:
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inadequate communication between specialists and primary care providers and insufficient information provided for long‐term follow‐up care (Barnes 2000; Dworkind 1999; Johansson 2000; Oeffinger 2006);
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deficient communication between health care providers and the patient (Airey 2002; Dumont 2005; Hack 2005);
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insufficient coordination of health services and health care providers (Bickell 2001; Earle 2006; Earle 2004);
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difficulties to maintain a progressive transition between curative and palliative treatments (Lofmark 2005);
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sub‐optimal care plans (Miedema 2003) and lack of clinical guidelines (Earle 2006);
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lack of education and training of health care providers (Alvarez 2006; Dworkind 1999).
How the intervention might work
The literature describes a number of formal programs, care delivery approaches, and roles that may be applied to operationalise continuity of care. These interventions are often multifaceted, as they can combine multiple components such as: (1) interdisciplinary approaches (accessible through most of the illness continuum) including case conference, shared written documentation tool, and interdisciplinary care standards; (2) comprehensive assessment of patient and family needs and strengths; (3) patient and family education and involvement in decision making; (4) implementation of a care plan with measurable goals; (5) identification and coordination of supplemental resources; (6) integration of care through each transition; (7) evaluation (Beddar 1994). These various components are sometimes encompassed within specific models of care delivery, such as shared care or nurse‐led follow‐up.
Shared care refers to the joint participation of primary care physicians and specialists in the planned delivery of care for patients with a chronic condition, informed by an enhanced information exchange over and above routine discharge and referrals (Hickman 1994; Oeffinger 2006). Recent descriptive studies suggest that the majority of older patients with breast and colorectal cancer are receiving care from both primary‐care physicians and oncology specialists and that preventive services (e.g. monitoring for chronic conditions such as diabetes, heart disease) are more often received when a primary‐care physician is involved (Earle 2006; Earle 2004; Etim 2006; Ganz 2006). However, cancer screening services are received more reliably when an oncology specialist is also caring for the patient (Etim 2006; Keating 2006). For example, a shared care intervention comprising a collaborative home‐care dossier to improve communication between caregivers has led to a significant reduction in the use of hospital services and in improved patient/caregiver communication (Smeenk 1998,Smeenk 1998a,Smeenk 2000).
Nurse‐led follow up care interventions have also been developed to ensure safe monitoring of disease status, continuity of care, and close liaison with primary and specialist care teams (Moore 2006). According to this model, patients who are stable on completion of treatment would be supported by nurse specialists responsible for coordinating follow‐up care and, depending on the needs, would be provided information, emotional support, symptom management, and referral to oncologists, palliative care teams, social care and/or primary health care (Moore 2006). Nurses can either be based in the community or in specialized oncology clinics, and are sometimes referred to as case manager, patient navigator, advanced practice nurse, breast cancer coordinator, clinical coordinator or follow‐up nurse (Fillion 2006). There are examples of successful nurse‐led follow‐up interventions applied to patients with cancer which led to a reduction in the number and severity of symptoms, to an increased survival (Addington‐Hall 1992), to an improved quality of life, and to improved patient satisfaction with the care received (Faithfull 2001).
Why it is important to do this review
Many authors have recognized the lack of continuity in the services needed by patients throughout their trajectory of care as one of the main problems of cancer care (Dudgeon 2007; Dumont 2005; Grunfeld 2006; Gysels 2007; Haggerty 2003). To address this problem, the Institute of Medicine (US) (Institute of Medicine 2006) recommends that patients completing primary cancer treatment be given a comprehensive care summary and follow‐up care plan to optimize both the continuity and the coordination of their care. However, the essential elements of follow‐up care plans need to be identified, the optimal levels of involvement of various specialists and primary care providers in the creation and application of the care plans need to be determined, and ways to optimize communication between providers should also be evaluated. The current evidence provides little guidance on whether one approach is superior to another and there is a need to identify evidence that will guide health care planning and provide a framework for the follow‐up of patients with cancer. The present review will thus summarize the various approaches tested to date and evaluate their effects in order to identify the best evidence‐based interventions within the reach of existing resources.
A number of systematic reviews have already been undertaken to evaluate the effectiveness of interventions to improve the care of patients with cancer. Some have focused on specific aspects of these patients' care, such as the reviews of Bruinvels et al. (Bruinvels 1994) and Collins et al. (Collins 2004), which evaluated how the intensity of follow‐up care influenced survival and psychological distress. Alvarez and Agra (Alvarez 2006) also reviewed an aspect of care unrelated to continuity: their study examined how PCP education could improve opioid prescription.
Other reviews covered broader subjects related to some aspects of care continuity, such as a review from Cox and Wilson (Cox 2003) which found significant evidence that nurse‐led follow‐up by telephone satisfied patients' need for psychological support and information. This review thus covered only relational continuity aspects of cancer care, without covering informational or management continuity aspects, which are also essential for a cross‐boundary type of care such as cancer care. Gysels et al (Gysels 2007) reviewed the studies that evaluated the impact of patient‐held records as a mean to improve informational continuity aspects of the care of patients with cancer. They found no evidence that such instrument improved patient outcomes or communication and information exchange amongst health care practitioners.
Two reviews covered relational, informational and management continuity of care for patients with cancer, but either they limited their search to some types of interventions, or they included studies on patients with other conditions than cancer. Sussman et al. (Sussman 2004) evaluated the effectiveness of case management interventions to improve care coordination and patient outcomes. They found considerable heterogeneity in the results, which they attributed to the various case management models tested, and concluded that case management interventions seemed effective only for newly diagnosed patients. O'Hare et al. (O'Hare 1993) covered a wider array of interventions that aimed to improve discharge planning in many types of participants, including patients with cancer. They found fourteen experimental studies that covered early discharge programs, comprehensive discharge protocols, patient education programs and home care, but only eight among these had been designed for cancer patients. These authors were able to synthesize their findings in a list of recommended strategies, such as the need of a multifaceted approach and of communication linkage across agencies to improve continuity of care.
To our knowledge, no recent systematic review has covered all aspects of continuity (relational, informational, and management) and examined all types of interventions to assess their effectiveness on patients and their relatives, on professional and informal caregivers and on care processes.
Objectives
1. To classify and describe the various interventions tested in the literature to improve continuity of care in the follow‐up of patients with cancer.
2. To determine the effectiveness of the tested interventions to improve continuity of follow‐up care.
Methods
Criteria for considering studies for this review
Types of studies
(1) Randomized controlled trials (including cluster trials), (2) controlled clinical trials in which participants were definitely assigned prospectively to alternative forms of health care using quasi‐randomized allocation methods (e.g. alternation, date of birth, patient identifier) or possibly assigned prospectively to alternatives forms of health care using a process of randomized or quasi‐randomized allocation, (3) controlled before and after studies or (4) interrupted time series. Studies published in all languages will be included.
Types of participants
Adults with cancer or health care providers of adults with cancer. Studies including patients in palliative care will be included only if a majority of participants (>50%) are adults with cancer or health care providers of adults with cancer.
Types of interventions
Well‐defined interventions that explicitly stated aiming to improve the continuity of cancer care will be included in this review. However, since most interventions that answer a continuity problem are not necessarily described as such, the following are the types of intervention that will be included in this review: (1) shared care, (2) case management, (3) education and training for patients or their family or for professionals, (4) implementation of individual follow‐up care plans, (5) care protocols, directives or guidelines, (6) strategies to improve communication between healthcare professionals such as referral guidelines, transmission of comprehensive treatment summaries and transmission of treatment plans, (7) multidisciplinary teams, (8) comprehensive assessment of patient and family needs and strengths and their involvement in decision making. Studies which evaluated specialized teams accessible through a single phase of patient follow‐up will be excluded from the review unless they explicitly included an intervention to improve continuity of care.
If improving care continuity was not an explicit goal of the study, and if the intervention was not described as one listed here above, then an intervention could still be included if the data collected and results reported indicated to the satisfaction of all reviewers that the intervention was aimed at improving continuity of care.
We expect these studies to compare an intervention with usual care or with another intervention in equivalent settings.
Types of outcome measures
Multiple measures are needed to capture all aspects of continuity of care since no single measure is able to reflect the whole concept (Reid 2002). For the purposes of this review, the primary outcomes included will be the structure or process of health care services and objectively measured health professional, informal carer and patient outcomes, and self‐report measures performed with scales having known validity and reliability. Health professional satisfaction will only be included as a secondary outcome.
More precisely, the structure or process of health care services primary outcomes will include:
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utilization of community/specialist care services,
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care coordination and continuity,
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availability and transfer of information between providers,
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adherence to cancer‐specific protocols that extends across care site,
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time to detection of recurrence,
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documentation of symptoms,
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place of death, and
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survival.
Primary patients‐related outcomes will include:
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patients satisfaction,
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quality of life, and
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patients' mental and physical health.
Primary care provider‐related outcomes will comprise:
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quality of life, and
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mental health.
Search methods for identification of studies
Electronic searches
We will search the Cochrane Effective Practice and Organisation of Care Group (EPOC) Specialised Register and the Cochrane Central Register of Controlled Trials (CENTRAL, current issue). In addition, MEDLINE (1966 to present), EMBASE (1974 to present), CINAHL (1982 to present), and PsycINFO (1967 to present) will be searched using a strategy incorporating the methodological components of the EPOC search strategy. We will search MEDLINE (through PubMed) using the following search strategy, which will be translated into the other databases using the appropriate text words and controlled vocabulary:
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Neoplasms [Mesh]
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"Palliative Care" [Mesh]
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"Medical Oncology" [Mesh]
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"Oncologic Nursing" [Mesh]
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"Oncology Service, Hospital" [Mesh]
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"Cancer Care Facilities" [Mesh]
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Neoplasms [tiab] OR "Palliative Care" [tiab] OR "Oncologic Nursing" [tiab] OR "Oncology Service*" [tiab] OR Cancer [tiab]
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#1 OR #2 OR #3 OR #4 OR #5 OR #6 OR #7
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"Cooperative Behavior" [Mesh]
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"Patient Care Team" [Mesh]
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"Continuity of Patient Care" [Mesh]
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"Case Management" [Mesh]
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"Patient Discharge" [Mesh]
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"Patient Care Planning" [MeSH:NoExp]
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"Community Health Planning/organization and administration" [Mesh]
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"Delivery of Health Care, Integrated" [Mesh:NoExp]
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"Professional‐Patient Relations"[MeSH]
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"Interprofessional Relations"[MeSH]
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"Patient‐centered care"[Mesh]
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"Professional‐Family Relations"[MeSH]
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"Continuity of patient care" [tiab] OR “Continuity of care" [tiab] OR “Care continuity” [tiab] OR “Continuum of care" [tiab] OR "Care continuum" [tiab] OR "Interpersonal continuity" [tiab]
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“Discharge planning” [tiab] OR "Patient discharge" [tiab] OR "hospital discharge" [tiab] OR "discharg* plan*" [tiab]
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“Patient‐held record” [tiab]
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“Shared care” [tiab] OR “Shared service*” [tiab] OR "shared notes" [tiab]
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"Case management" [tiab]
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“Liaison nurse*” [tiab]
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“Transmural care” [tiab]
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“Collaborative practice*” [tiab] OR “Collaborative care” [tiab]
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“Nurse‐led follow‐up” [tiab] OR "telephone follow‐up" [tiab]
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“Interdisciplinary care” [tiab] OR “Interdisciplinary team*” [tiab]
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“Service* integration” [tiab] OR "Integrated care" [tiab]
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"Patient Care Team" [tiab] or "Team care" [tiab]
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"Patient care planning" [tiab]
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"Multi agency working" [tiab] OR "Seamless care" [tiab] OR "Inter agency working" [tiab] OR "Multi professional working" [tiab] OR "Interprofessional working" [tiab] OR "care management" [tiab]
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#9 OR #10 OR #11 OR #12 OR #13 OR #14 OR #15 OR #16 OR #17 OR #18 OR #19 OR #20 OR #21 OR #22 OR #23 OR #24 OR #25 OR #26 OR #27 OR #28 OR #29 OR #30 OR #31 OR #32 OR #33 OR #34
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Randomized controlled trial [PT]
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Random* [TW]
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Control* [TW]
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Intervention* [TW]
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Evaluat* [TW]
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#36 OR #37 OR #38 OR #39 OR #40
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Animals [Mesh]
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Humans [Mesh]
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#42 not (#42 and #43)
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(#8 and #35 and #41) not #44
The choice of search terms and categories of intervention was made based on previous research (O'Hare 1993; Beddar 1994; Freeman 2001; Reid 2002; Cox 2003; Sussman 2004; Dumont 2005; Gysels 2007) in order to reduce the risk of bias in searching and selecting studies.
Searching other resources
In addition, reference lists of primary articles and reviews will be scanned, and ISI Web of Science and Google Scholar will be searched for studies citing the articles included in the review.
Data collection and analysis
Selection of studies
Two reviewers will independently select the studies to be included in the review. Disagreements regarding study inclusion will be resolved by discussion between the two reviewers.
Data extraction and management
Two reviewers will independently extract data regarding the inclusion criteria (design, participants, interventions and outcomes), quality criteria and results, using a specially designed data extraction form based on the Cochrane EPOC data collection template.
Assessment of risk of bias in included studies
Two reviewers will independently assess the methodological quality of the selected trials using the EPOC group criteria for randomized controlled trials and controlled clinical trials, for controlled before‐after designs and for interrupted time series (see EPOC‐specific resources for review authors in group details). However, since there is typically a high attrition rate in patients with cancer, we will adapt the two EPOC criteria "Follow‐up of professionals" and "Follow‐up of patients or episodes of care", by considering surviving participants instead of all subjects randomized. For example, for the criterion labelled "Follow‐up of patients or episodes of care", the modified criteria will be: Score DONE if outcome measures were obtained for 80‐100% of subjects who survived through the end of the trial; score DONE if there is an objective data collection system; score NOT CLEAR if not specified in the paper; score NOT DONE if outcome measures obtained for less than 80‐100% of subjects who survived through the end of the trial.
Data synthesis
Studies will be grouped according to type of setting, type and length of intervention, patient's phase of care (pre‐treatment, treatment, surveillance or terminal), study design, and type of outcome (patient, care provider or process).
We expect to find clinical and methodological diversity, with various models of interventions, disparate outcomes, many different care settings, and various study designs. This makes it unlikely that statistical pooling will be feasible, but if there appears to be a body of studies amenable to meta‐analysis, then continuous data will be combined using weighted mean differences for the outcomes measured in the same unit on the same scale. If continuous data were measured using different scales, then standardized mean differences will be calculated instead. For binary data, results will be expressed as risk ratios or absolute risk differences. Longer ordinal scales will be analyzed as continuous data and shorter ordinal scales will be transformed into binary data by combining adjacent categories together. Summary of findings tables will be used for data presentation and will include information about each of the main outcomes (number of patients, number of trials, the control group risk, effect size and quality of the evidence). Where comparisons randomize or allocate clusters (professionals or health care organizations) but do not account for clustering during analysis there are 'potential unit of analysis errors' resulting in artificially low p‐values and overly narrow confidence intervals (Ukoumunne 1999). We will attempt to reanalyse studies with potential unit of analysis errors if information is available on the size/number of clusters and the value of the intracluster correlation coefficient in addition to the outcome data ignoring the cluster design. If a comparison is reanalysed, then the p‐value will be quoted and annotated with 'reanalysed'. If this is not possible, we will report only the point estimate. If several primary outcomes are reported in one trial, we will explore calculating effect sizes for each outcome and extracting the median value across the outcomes.
If meta‐analysis is not feasible, we will make a qualitative assessment of the interventions based upon study quality, the direction and significance of observed effects and consistency of findings (number of studies using an approach reporting the same effect out of the number of studies using the approach reporting no effect).
Subgroup analysis and investigation of heterogeneity
Graphs will be visually inspected to investigate the possibility of statistical heterogeneity. We will supplement this by using the I‐squared statistic which provides an estimate of the percentage of variability due to heterogeneity rather than chance alone. Where the I‐square estimate is greater than or equal to 50%, we will interpret this as indicating the presence of substantial levels of heterogeneity (Higgins 2006). If inconsistency is high, we will not summate data, but present the data separately and investigate the reason for heterogeneity.
Sensitivity analysis
If an obvious reason for an outlying result is apparent, analyses will be performed both with and without outlying studies as part of a sensitivity analysis.
