Patients, family caregivers, and patient navigators§

A partnership approach

Authors

  • Guadalupe R. Palos DrPH, LMSW, RN,

    Corresponding author
    1. Cancer Survivorship Program, The University of Texas MD Anderson Cancer Center, Houston, Texas
    • The University of Texas MD Anderson Cancer Center, Cancer Survivorship Program, 1515 Holcombe Boulevard, Box 1455, Houston, TX 77030
    Search for more papers by this author
    • Fax: (713) 745-3475

  • Martha Hare PhD, RN

    1. Center to Reduce Cancer Health Disparities, National Cancer Institute, National Institutes of Health, Rockville, Maryland
    Search for more papers by this author

  • The authors acknowledge the following members of the Family and Caregiver Workgroup: Lynn Basilio, Bruce Black, Courtney Dini, Stacey Brooker, Cassandra Malone, Diane McElwain, Lori McMullen, Nina Miller, Carolyn Perry, and Victoria Warren-Mears.

  • The articles in this supplement are based on presentations at the “National Patient Navigator Leadership Summit”; March 23-24, 2010; Atlanta, GA.

  • §

    The opinions or views expressed in this supplement are those of the authors, and do not necessarily reflect the opinions or recommendations of the publisher, the editors, the University of Illinois at Chicago, the American Cancer Society, or the Ralph Lauren Center for Cancer Care and Prevention.

  • National Patient Navigator Leadership Summit (NPNLS): Measuring the Impact and Potential of Patient Navigation, Supplement to Cancer.

Abstract

BACKGROUND:

Navigation services may be strengthened by establishing a partnership between the patient, family/caregiver, and the navigator. Involvement of a patient's familial or social network in the navigation process would allow patient navigators to spend more time and resources with the subset of patients who do not have support from family and friends. The Partnership Approach evolves from combining the strength of a patient's existing social support and network with the delivery of navigation services.

METHODS:

To develop this novel approach, the Family and Caregiver Workgroup was convened at the American Cancer Society's National Leadership Summit. Individuals were asked to serve in this group due to their interest, research, or experience in family and caregiver issues.

RESULTS:

By the end of the Summit, the workgroup had achieved 3 major outcomes: 1) enhancement of current patient navigation services by building a partnership between the patient, family or primary caregivers, and navigators; 2) identification of a set of core functions that a family/caregiver could perform in a partnership; and 3) consensus on a set of metrics to use with caregivers and patients. Five major domains were selected to measure patient and/or caregiver outcomes: quality of life, satisfaction with care, social support, distress, and caregiver burden. Metrics appropriate for each domain were recommended.

CONCLUSIONS:

Integration of these domains and scales in current navigation services is needed to develop future research. Evidence from such research would help determine whether the Partnership Approach contributes to improved patient and caregiver outcomes. Cancer 2011;117(15 suppl):3590–3600. © 2011 American Cancer Society.

INTRODUCTION

Cancer significantly changes the lives of patients and their families. A diagnosis of cancer is simultaneously accompanied by major disruptions in their day-to-day routines. Some patients have the knowledge, skills, and support to effectively guide them through the cancer experience. Yet other patients may require the support and guidance of a skilled individual to facilitate the needed services, perhaps due to lack of English proficiency, perceived or actual racism, mistrust of the health care system, inaccurate health knowledge, inability to pay for or access services, or a number of other reasons often associated with disparities seen in cancer outcomes in the United States.

To address the needs of these vulnerable or underserved patients, patient navigation programs have been developed and used across different phases of the cancer continuum. A growing body of practice-based evidence indicates patient navigator services improve patient outcomes related to cancer.1-5 More rigorous data based on core demographic, clinical, and patient-oriented variables are being collected as part of the first national cross-site analysis of patient navigation.4 However, empirical evidence examining the value and feasibility of integrating family or other caregivers as partners in the patient navigation models is nonexistent.

Over time, patient navigation programs have been defined and implemented in different ways. The type of navigation programs and services selected for a patient is primarily dependent on the phase of the cancer continuum.6 As patient navigation services have gained in popularity and the need to utilize resources efficiently increases, a logical next step is to examine the benefits that may accrue from involving the caregiver/family member as a partner as well as a recipient of improved outcomes through navigation. However, a lack of empirical evidence contributes to the ambiguity of how to integrate a family/caregiver into a patient-navigator relationship. It is important to define and agree upon a standard set of core functions that a family member or caregiver may perform within the boundaries of the patient navigation approach. This set of core functions would improve and enhance evaluation of the impact of navigation programs that include the family/caregiver. It is equally important to determine how this set of core functions may be measured and whether the functions contribute to improved cancer patients' outcomes.

The purpose of this article is to discuss how current patient navigation models may be strengthened by establishing a partnership between the family/caregiver and the navigator. We will discuss the components of the Partnership Approach based on a patient's interpersonal resources that may be capitalized upon when delivering navigation services. For example, assessment of the patient's social support networks may uncover additional sources of help in the delivery of navigation program services. Within the context of this model, we will also describe a set of core functions a caregiver may perform in the patient navigation model. Second, we will discuss metrics and scales that can be used to measure outcomes related to inclusion of the care partner in the patient navigation process. We will conclude by presenting recommendations for future research to examine the feasibility and effectiveness of the partnership approach.

Methods

At the American Cancer Society (ACS) National Leadership Summit, members of the Family and Caregiver Workgroup were selected and invited to participate in the summit due to their interest, research, or experience in family and caregiver issues. The members represented diverse backgrounds, professions, geographic regions, and populations (underserved, ethnic and racial minorities, and other similar vulnerable groups). The chair (G.R.P.) and co-chair (M.H.) informed the members of the workgroup of their charge and desired outcomes of the Summit. Through group discussion, the group achieved a consensus to: 1) support a patient navigation approach that builds a partnership between the patient, family or caregivers, and navigators; 2) identify key factors influencing patients, caregivers, and navigators during the patient navigation experience; 3) agree upon a standard set of core functions that a family/caregiver could perform in a partnership; and 4) ascertain a set of measures to use with caregivers and patients. In addition, the authors engaged in a literature review of measures that showed promise in being used as metrics in patient navigation research. At the Summit, this summary was shared and agreed upon by the workgroup.

Factors Influencing Patients, Caregivers, and Navigators

Influence of social support and networks on patient outcomes

Families have a significant role in the prevention, diagnosis, treatment, and recovery process in the cancer experience. In general, when cancer is diagnosed, the patient's family is the primary source of support. Family members face a number of stressors that can negatively influence the well-being of the family and the patient. Family support can positively influence a patient's psychosocial functioning and management of the disease.7, 8 Yet extant studies report an association between negative family interactions (eg, criticism, conflict) and poor patient outcomes such as depression,9 impaired physical functioning,10 and even death.11 The connection between family support and patient-reported outcomes is an important issue to consider when determining patient navigation services.

Social support and social networks are 2 concepts used to explain the association between interpersonal relationships and health outcomes, yet both have distinct characteristics and functions. Social networks describe the interpersonal or social relationships that an individual has formed, whereas social support may be regarded as a function of social networks.12 In fact, studies suggest social networks also may have positive or negative influence on patient outcomes. For example, strong social support and networks may serve as a protective factor that may reduce a person's risk to the negative effects of stress.13 There is also evidence demonstrating that negative social interactions such as mistrust or unrealistic demands are associated with a negative effect14, 15 or mood.16 Hence, asking a patient about his or her social network and support may be one of the first steps in a patient navigator's assessmemt.

Cancer patient navigation services, social support, and networks

Studies examining the association between social support, social networks, and their effects on cancer mortality rates are inconsistent.2, 7, 10, 11, 17 For example, a recent meta-analysis of 87 studies on the relation between social support and cancer mortality was conducted.8 These researchers found that in controlled studies 3 factors were associated with an increased risk of mortality including: having low levels of social support, having a small social network, and being unmarried. Other studies report the benefits of social support, including receiving encouragement to maintain a healthy lifestyle or seek treatment,18 being reminded to take medications or make appointments,19 having a larger number of individuals who may provide access to information and education,20 and having lower levels of cortisol, a stress-related hormone linked with tumor growth.21

However, there is a paucity of research examining how social support influences outcomes when patients receive navigation services during the different phases of the cancer experience. One study conducted by Jean-Pierre et al22 examined factors that hindered or assisted patient navigation. Factors examined in the study were grouped into patient, navigator, and external categories. The results indicated that social support was a major external factor that contributed to positive health experiences for the patient. These findings underscore the benefits of including caregivers and families in planning patient navigation services. Data continue to be collected regarding the relationship between patient navigation and patient social support. Future studies may examine the impact of patient navigation upon social support with the inclusion of a family member/caregiver as part of the patient navigation team.

Effects of cultural values on patient outcomes

Cultural values differ between patients and providers, including the navigators who deliver the services.23, 24 For example, providers trained in the biomedical model (often referred to as “Western medicine”) are taught to value patient autonomy, privacy, independence, and the patient-provider relationship.25 In contrast, patients and their families from diverse cultural and ethnic backgrounds may value collectivism, shared decision making, open communication, and a patient-provider-family relationship. Thus, patient navigation programs that include the patient's family may lead to better patient outcomes.

Cultural influence on language preference, communication, and relationships

Patient navigation models are based on a philosophy advocating for overcoming barriers and reducing disparities to quality cancer care. An example of a barrier addressed in the model is the impact of limited English proficiency and limited health literacy on reaching optimal cancer outcomes. The high demand for translation services may result in having a patient navigator or family member serve as translator. The authors do not advocate turning translation functions over to family members. Rather, they posit that a family member may serve as a check on whether vital information is being translated correctly or if those with limited health literacy have a clear understanding of information that may influence cancer decision making.

Even in the absence of linguistic differences, the heterogeneity of patients' cultural values may influence communication preferences. For example, some patients may prefer to have the navigator communicate with a family member designated as the spokesperson for the patient. Definitions of families and caregivers and the type of relationships between patients and their caregivers may vary as well. In this article, a caregiver is defined as an unpaid helper who provides emotional (caring, love, and trust), instrumental concrete services (eg, transportation), informational (information, advice, and suggestions), or appraisal (affirmation and feedback) support to the patient.2, 26 In American society, the structure and definition of families is changing. For example, a family may be comprised of nonbiological kin who has ties to family members.27 Further, certain ethnic or cultural groups rely on or prefer family members to be their informal caregivers.28 Regardless of the definition used, the support and guidance of families and caregivers are often needed and requested by patients.

Regrettably, there are also times when a patient diagnosed with cancer may have weak or nonexistent relationships with family or friends. In the latter example, the patient navigator's functions are even more important, since they may be the only source of support for the patient. In other cases, the patient may specifically request that family members not be involved in care.

Privacy and disclosure in navigation programs

Protecting an individual's private health information is an important issue in any health care setting. However, patient privacy, confidentiality, and sharing of information become even more significant when third parties are involved (eg, family, caregivers, or friends).29, 30 Health care providers, including patient navigators, are often questioned about the condition of the patient. There may be occasions when a patient may not wish to disclose information to the family/caregiver. So a key function of the patient navigator is to protect and respect the patient's privacy and still maintain a working relationship with the family/caregivers. To determine how to appropriately protect a patient's privacy, 2 questions must be answered by the patient and navigator. First, under what circumstances does the patient wish the third parties (family/caregivers) to be given information? Second, which member of the family/caregiver system should receive the information? Once these questions have been answered, the patient navigator can communicate the patient's preferences to other health care providers and to the family/caregivers.

Building alliances between navigators and family/caregivers

Families and caregivers may provide skills and services critical to successful navigation programs including: practical information on the preferences of the patient; patient advocacy when needed; and service coordination when fragmentation occurs. Table 1 provides examples of navigation services that a navigator could share with a family/caregiver, when appropriate. By including the caregiver in the delivery of navigation services, the alliance between the patient, caregiver, and navigator may be strengthened and possibly be made more efficient, by building an alliance among the patient, family/caregiver, and navigator. Because there are so many possible family member or caregiver arrangements, this article is taking the perspective that a family member or caregiver forms a partnership with the patient and the patient navigator.

Table 1. Types of Patient Navigator Activities Currently Offered in Program Services
Informational
 Seek referral and follow-up services accessible to patient
 Assist with housing (eg, identify assistance when rent is overdue)
 Arrange child care or elder care
 Find resources to deal with financial problems
Instrumental
 Assist with transportation
 Provide direct language translation or other interpretive services
 Assist with patient-provider communication
 Communicate with providers regarding patient's concerns
 Schedule clinical services during hours patient is available
 Accompany patients to clinic visits
Emotional
 Assess availability of social support networks to help the patient
 Provide emotional support and/or refer for greater level of psychosocial intervention
Appraisal
 Provide direct patient education on cancer-related issues

The Partnership: A Proposed Approach

Current trends in American society indicate that there will be an increased demand for patient navigators as our population ages, as the number of cancer cases increases, and if inequitable cancer care for underserved populations continues. It is unlikely that there will be an adequate number of patient navigators in the current health care system to provide support to every patient facing barriers to standard-quality services. Involvement of the patient's own familial or social network in the navigation process would allow patient navigators to spend more time and resources with the subset of patients who do not have support from family and friends. The partnership approach is an innovative way to integrate the families and caregivers as active care partners in the delivery of patient navigation services. The goal would be to optimize the use of resources that may enhance the patient's and caregiver's quality of life.

Proposed partnership approach

The Partnership Approach consists of a series of steps the family or caregiver needs to complete before they may become care partners in providing navigation services. First, a meeting is held to identify potential members who may join a team that comprises the patient + family/caregiver + navigator services team. Next, the navigator team negotiates the roles and functions of the family/caregiver. Once these steps are determined, navigators may implement the functions listed in a standard navigation model. The goal of the Partnership approach is to obtain optimal patient outcomes through the collaborative efforts of the team. The approach may be used in any setting and by navigators with diverse backgrounds, including social workers, nurses, case managers, and trained laypersons.

The Partnership Approach evolves from the integration of social support network31-33 concepts with factors found in a social-contextual framework.34 Empirical research on the relationship between social support network theory and the delivery of patient navigation services is in its early stages.35 These relationships may exist between patients and their family, friends, and concerned others who help a person fulfill their needs. Strong social support systems are generally associated with fewer health problems and more positive outcomes when there are stressful events.31-34 The integration of these concepts with patient navigation services builds on the social support ties and networks of the patient. These services may be used when the patient prefers to have the caregiver and family actively involved in their care. The desired outcome is delivery of optimal navigation services that best address the needs of patients and their families.

The relationships between the patient and persons who comprise a patient's social support network often vary. In some cases, the members will be family or close non-kin individuals. In other circumstances, the patient's social support network may comprise members from the community or from their faith-based institution. The navigator may then identify key members of the support network, their relationship to the patient, and ways the person provides support (emotional, instrumental, informational, and self-management). This information would assist the navigator in determining if and which members of the current social network would be included in the patient's care.

Core functions of the partnership approach

Core functions of a caregiver in the partnership approach could range from simple to complex activities. Examples of the functions include to: 1) identify family strengths and available resources; 2) encourage participation in cancer screening programs, treatment regimens, and follow-up visits; 3) promote healthy behavior and lifestyles, and 4) build stronger relationships between the navigator, patient, and family.

The core functions of the care partner would be tailored to the specific needs of the patient and the type of patient navigator services offered to the patient. The functions would also vary by the phase of the cancer continuum the patient may be in at the time. Table 2 provides a list of core functions that a family/caregiver may share with the patient's navigator after an assessment and discussion with the patient and family/caregiver.

Table 2. Selected Examples of Core Functions of a Care Partner Across the Cancer Continuuma
Phase of Cancer ContinuumPhase 1 Early Detection, Screening, and PreventionPhase 2 Diagnosis and TreatmentPhase 3 Post-Treatment and Disease ManagementPhase 4 SurvivorshipPhase 5 End of Life
  • a

    Care partner refers to the patient's family or caregiver.

Navigation domainAccess to care Knowledge of resourcesKnowledge of the disease and its effects on physical healthEmpathy and active listening Build liaison with other providersInformation and educationAdvocacy and skilled communication
Functions of the care partnerCare partner provides transportation to screening facilityCare partner helps the patient adhere to diagnostic recommendations by participating in the conversation with provider and navigator concerning results of screening testsCare partner provides emotional support to patient with fear of recurrenceCare partner supports patient in seeking survivorship clinics for long-term care of the patientCare partner and family communicate preferences of patient for symptom management and end-of-life care to the navigator
Functions of the navigatorNavigator identifies programs and services that provide screening examinations to vulnerable populations, eg, the elderly, underserved, or ethnic/racial groupsNavigator identifies barriers that may impact patient's compliance with plan of care, eg, no insurance, inadequate sick leave for treatment, poor communication with provider about symptomsNavigator identifies community-based organizations that provide psychosocial support and services, eg, counseling, meditation, faith-based programsNavigator assists the patient in determining how to develop a transition plan for moving to a survivorship clinicNavigator identifies barriers and beliefs, eg, reluctance to use opioids; advocates for patient and family in communicating preferences regarding end-of-life care to providers

Outcome Metrics

Outcome measures provide the evidence to determine if the services included in the expanded patient navigation model contribute to positive patient outcomes such as increased compliance with screening recommendations or a better quality of life. Other articles in this issue propose additional metrics, which may be used to evaluate patient-level outcomes. These measures may be used as the basis for comparison of navigator programs that include the family/caregiver versus programs that do not include the family/caregiver in the delivery of navigation services.

There is also a federal-funded database known as the Patient Reported Outcome Measurement Information System (PROMIS), which standardizes health-related patient-reported outcomes (source). The article included in this supplement on Patient-Reported Outcomes provides a comprehensive discussion and overview of measures from the PROMIS database that may be used in conjunction or in place of the scales recommended in this discussion.

Assessment of social support and networks

In the Partnership Approach, the patient navigation services are initiated by a member of the patient's health care team. Once the navigator makes contact with the patient, it would be beneficial for the navigator to identify the patient's preferences for communication, decision making, and disclosure. Using this proactive approach will help minimize the risk of poor communication, mistrust, or family interference.

Once these preferences have been discussed and documented, the navigator would proceed with baseline assessment of the patient's barriers and assets. A needs assessment would help determine if the patient has a social support network to provide assistance during the cancer experience. Specific navigation services would be tailored to meet the patient's presence or absence of social support networks. The needs assessment would also help identify the needs of the patients in context of their family system. Examples of critical criteria to evaluate (in addition to those previously discussed) would include the patient's/caregiver's current living arrangements, the relationship between the caregiver and patient, the number of caregiving hours the patient requires, and whether the support to the patient would be conducted through short- or long-distance caregiving.

Additional needs to assess include access to transportation, adequacy of housing, availability of social and practical support, primary language, literacy level, need for child and/or elder care, accessibility of needed health care facilities, insurance status, financial concerns, employment status (including available sick leave), patient's attitudes and emotional state, and medical or psychological comorbidities. Assessment of the need for these services could be conducted at the same time the navigator is assessing the patient's overall strengths and challenges. These data would help the navigator gain a better understanding of how the family/caregiver could support the patient.

Once this part of the assessment is completed, the patient and navigator would discuss and negotiate if, who, what, and how much family members/caregivers would be involved in the patient's care. A careful discussion of these areas would help determine the types of services a family/caregiver would be able to deliver. Once the navigator has a complete summary of the patient's needs, strengths, and challenges, he/she would approach the family/caregiver to discuss the patient's preferences and options. Through shared decision making and negotiation, the patient, family/caregiver, and navigator would reach consensus on the: 1) number and type of social support networks available to help the patient; 2) specific individuals from social support networks who could be involved in the patient's care; 3) amount of time an individual from the social support system could be involved; and 4) specific patient navigation services assigned to each individual.

Regrettably, there are also times when a patient diagnosed with cancer may have weak or nonexistent relationships with family or friends. In the latter example, the patient navigator's role and function becomes more significant, perhaps as the only source of support for the patient. In other cases, the patient may specifically request that family members not be involved in care.

The Partnership Approach generally presupposes that the patient is active in his or her care. However, situations occur where the caregiver is primarily responsible for the patient. For example, the caregiver may be responsible for those who may not be able to make decisions such as a minor child, cognitively impaired adults, or a person nearing the end of life. In other circumstances, there may be a long-distance caregiving relationship between the caregiver and the recipient of care. These situations would require additional work for the patient and navigator at the beginning of the relationship. However, over time, the intensity of the navigation services may decrease if sources of social support or network are identified.

Patient and Caregiver Metrics

To determine if the partnership approach contributes to better patient outcomes, data must be collected on metrics specific to the patient and the caregiver. Patient-reported outcome measures have been found to provide crucial information for assessing the burden of cancer and the effectiveness of treatments or interventions.36 There is growing recognition that perspectives of patients and their family caregivers influence decision making related to treatment, navigation services, and other cancer-related outcomes. Thus, the authors propose metrics, which, potentially, could be administered to patients and caregivers.

Potential domains to measure in patients and caregivers include distress, social support, quality of life, satisfaction with care, and caregiver burden. Other articles in this issue provide examples of instruments and metrics that may also be used to evaluate the effectiveness and efficiency of using family/caregivers in navigation programs and the impact of navigation on the family/caregiver.

Quality-of-life (QOL) measures

Table 3 presents the proposed quality-of-life instruments that may be used. Validated and widely used QOL instruments include the Medical Outcomes Study SF-12 (MOS-12),37 the Eastern Cooperative Oncology Group's Performance Status Scale (ECOG),38 and the Karnofsky Performance Status Scale (KPSS).39 Many of the instruments have not been validated in cancer patients using patient navigation services. Factors to consider when selecting a QOL measure for patients or caregivers include language or literacy barriers; no or limited experience with completing rating scales; and over/underestimation of physical and psychosocial status.

Table 3. Metrics Recommended by Partner and Phase of the Cancer Continuuma
Metrics by Partner on Navigation TeamPhase 1 Early Detection Screening and PreventionPhase 2 Diagnosis and TreatmentPhase 3 Post-Treatment and Disease ManagementPhase 4 SurvivorshipPhase 5 End-of-Life Care
  • Abbreviations: CSI, Caregiver Strain Index; DNR, do not resuscitate; ECOG, Eastern Cancer Oncology Group; EOL, end of life; FAMCARE-2, Family Satisfaction Scale, version 2; KPSS, Karnofsky Performance Status Scale; NCCN, National Comprehensive Cancer Network; PSSS, Perceived Social Support Multidimensional Scale; QOL, quality of life; SF-12, Medical Outcomes Survey.

  • a

    No. and percent calculated for each measure reported by patient and caregiver.

  • b

    Quality of life: 3 different instruments.

  • c

    Overall scores for mental and physical summary domain, patient's self-report.

  • d

    Summary score determined by provider.

  • e

    National Comprehensive Cancer Network Clinical Practice Guidelines in Oncology: Distress Management.

Patient's reported outcomesIndicator Adheres to recommended screening procedures (eg, mammograms, colonoscopies, or Pap smear screenings)Indicator Adheres to follow-up care for abnormal findings Complies with treatment planIndicator Adheres to treatment plan Communicates severity and interference of physical and psychosocial symptoms Complies with treatment planIndicator Participates in survivorship clinic Complies with guidelines for screening, late effects, and surveillanceIndicator Requires family's help with decision making regarding DNR and other areas Satisfaction with EOL navigator services (patient or proxy)
Providers' tools for assessing QOL in patientsQuality of lifeb SF-12cQuality of lifeb SF-12c ECOGd KPSSdQuality of lifeb SF-12c ECOGd KPSSdQuality of lifeb SF-12cQuality of lifeb SF-12c ECOGd KPSSd
Scales for patient outcomesSatisfaction Patient satisfaction with cancer care Support networkSatisfaction Patient satisfaction with cancer care Social support PSSSSatisfaction Patient satisfaction with cancer careSatisfaction Patient satisfaction with cancer careSatisfaction Patient satisfaction with cancer care
Caregiver- and family-reported outcomes and scalesFAMCARE-2 Distress Caregiver burden Satisfaction Caregiver or family's satisfaction with patient's careFAMCARE-2 Distress NCCN distress thermometere CSI Satisfaction Caregiver or family's satisfaction with patient's care Monitor changes over the course of the patient's illness trajectory   
Navigator's toolsNavigator and family complete a needs assessment Social support or network available Willingness to help and no. of hours available Relationship to patient Coresidence with patient Long- or short-distance caregiving Use of documentationReassess needs of the patient and the family Monitor changes over the course of the patient's illness trajectory   

Quality-of-life instruments that a patient or caregiver may complete are also available. The strengths and limitations of cognitively and psychometrically tested scales are discussed in the supplement's article completed by the Patient-Reported Outcomes Working Group. An example of a QOL scale to use with caregivers is the Caregiver Quality of Life Index-Cancer Scale.40 This instrument contains 35 items and uses a 5-point Likert scale as its response format.

Satisfaction scales

Scales measuring satisfaction with care may have strengths, limitations, and are based on self-reports from patients or caregivers. In this section, the authors briefly discuss instruments to use with either patient or caregiver populations. An instrument designed to assess patient satisfaction with cancer care when receiving navigation to diagnostic and treatment settings is the Patient Satisfaction with Cancer Care (PSCC). Investigators tested the psychometric properties of the PSCC and found the instrument met the criteria established for robust reliability and validity.41 Recently, a new instrument has been developed to measure patient satisfaction with navigation services (PSN-1).42 This scale shows great promise for future use. An instrument used to measure the family's satisfaction with cancer care in long-term or palliative care settings is the FAMCARE Scale.43, 44 This instrument may be used as a measure of caregiver satisfaction with patient navigation services if revised and validated with caregivers. To date, no scales have been designed and validated for the Partnership Approach described in this article.

Social support

Patient navigators may assess the level of social support and number of social support networks accessible by the patient and family. As discussed earlier, the relationship between the patient and caregiver in a social support network and the type of assistance provided are important factors to assess when determining patient navigation services. There are multiple instruments that measure various concepts of social support; however, 1 brief, concise instrument is the Multidimensional Scale of Perceived Social Support (PSSS), which may be used in a clinical or community setting.45

Distress

A distress thermometer (DT), which measures psychological distress reported by patients, has been developed by the National Comprehensive Cancer Network.46 Although it has not been widely used in cancer caregiver populations, Zwahlen and colleagues reported the DT had the potential to be used in assessing the caregiver's level of distress.47 Both patients and caregivers may use this scale to communicate their distress to the navigator or other members of their health care team.

Caregiver burden

Caregiver burden has been found to contribute to poorer caregiver and patient outcomes. There are several instruments available to measure this concept. The authors recommend using the Robinson's Caregiver Strain Index (CSI).48 This instrument is brief, uses a yes or no response format, and assesses the caregiver's physical, social, financial, and employment areas. The CSI is an excellent scale to screen for caregivers with physical symptoms or families who require more intense services.49 It is important for navigators to have the appropriate resources in place to make referrals when caregivers/families express great distress.

Despite the limitations of the metrics described above, these measures would help determine if the Partnership Approach is feasible within a patient navigation program and whether it is useful in improving patient outcomes. These metrics are an initial attempt to collect data to address these goals but will likely warrant modification in the future as the field of navigation grows to include family/caregivers more systematically.

Recommendations for Future Directions

Patient navigation models, programs, and services continue to grow and change dramatically across settings. The proposed Partnership Approach in this article evolves from the cancer health disparities paradigm. As discussed in other articles in this supplement, this paradigm asserts that patient navigation is an intervention to overcome barriers experienced by underserved populations to reduce gaps in quality and timely cancer-related outcomes.

Based on a 20-year history of patient navigation and the possibility of health system changes pursuant to health care reform, this is an excellent opportunity to consider ways of increasing the efficiency of patient navigation. This article has discussed ways of redefining the family/caregiver's role, functions, and outcomes within patient navigation. To assess the utility of this approach, navigation programs that include the patient's family/caregivers as partners in the delivery of navigation services must be evaluated. To better understand the Partnership Approach, it would need to be implemented and evaluated in different settings and by navigators with different backgrounds (eg, social workers, nurses, or trained lay-persons). The use of a common set of metrics, such as those recommended, would facilitate evaluation of the Partnership Approach across time and support much-needed research on the effectiveness of the patient navigation model.

Additional research studies are also needed. Although there are numerous possibilities, 3 are proposed here. First, health services research would help determine if the Partnership Approach increases or decreases the cost of delivering patient navigation services. Second, research patient-provider communication may help with patient decision making when the caregiver is included as part of the patient navigator team. Tools have been developed for patients and physicians regarding efficacy of communication, and research on communication and decision making has been a rich area of research.50

Finally, research to investigate the effects of patient navigation on the caregiver's physical and psychosocial health is especially needed for those caring for children, the cognitively impaired/mentally incompetent, and those at the end of life. Caregiver burden is a common condition, which is often overlooked in the delivery of patient navigation services. Additional research is needed on interventions to protect the physical and emotional health of the caregivers who are partners in the Partnership Approach.51

Conclusions

In this article, we propose that the patient navigation process could be strengthened, and possibly made more effective, when partnerships are formed among the patient, family, and navigator. As changes in the current patient navigation models occur, it is important to include the patient, family, and navigator as a unit. The overall goal of the Partnership Approach is to support cancer patients and their families/caregivers while navigating the complex cancer care system. Ultimately, with further research, the Partnership Approach may become an integral part of patient navigation services targeting America's diverse populations.

FUNDING SOURCES

This conference and supplement were cosponsored by Pfizer Oncology, Livestrong (Lance Armstrong Foundation), Susan G. Komen for the Cure, the Oncology Nursing Society (ONS), the American College of Surgeons Commission on Cancer, the American Cancer Society, and AstraZeneca.

CONFLICT OF INTEREST DISCLOSURES

The authors made no disclosures.

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