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Communication Concerns When Transitioning to Cancer Survivorship Care
ARTICLE IN PRESS Seminars in Oncology Nursing, Vol ■■, No ■■ (■■), 2017: pp ■■-■■
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COMMUNICATION CONCERNS WHEN TRANSITIONING TO CANCER SURVIVORSHIP CARE DENICE ECONOMOU AND ANNE REB OBJECTIVES: To discuss communication needs that relate to transitioning care for cancer survivors and strategies to facilitate patient-centered communication.
DATA SOURCES: National Cancer Institute monograph and peer reviewed articles related to survivorship and communication.
CONCLUSION: Key communication tasks in survivorship include managing uncertainty, exchanging information, and enabling self-management. These tasks inform assessment strategies and interventions in survivorship care planning. Communication training must target survivors and providers given the reciprocal and interactive nature of communication.
IMPLICATIONS FOR NURSING PRACTICE: Implications for Nursing Practice: Nurses need to evaluate survivors’ concerns and incorporate communication strategies in survivorship care planning to reduce distress and facilitate the exchange of information to improve referrals to supportive care resources.
KEY WORDS: patient-centered communication, survivorship care planning, transition of care, communication strategies, communication skills training, psychosocial concerns.
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ransitioning cancer patients from active treatment to survivorship follow-up care can be a stressful time for patients, families, and health care providers. The literature has documented that health care providers have often not prepared survivors for life after Denice Economou, RN, MN, CHPN: Senior Research Nurse Specialist, City of Hope, Duarte CA. Anne Reb, NP, PhD: Assistant Professor, City of Hope, Duarte CA. Address correspondence to Denice Economou, RN, MN, CHPN, 1500 E. Duarte Road, Duarte, CA 91010. e-mail: [email protected] © 2017 Elsevier Inc. All rights reserved. 0749-2081 https://doi.org/10.1016/j.soncn.2017.10.001
cancer.1 A recent study evaluated the unmet needs of cancer survivors and found the highest ranked unmet needs identified by over 50% of the participants were about lack of information and fear of recurrence.2 Another study evaluating the quality of communication between providers and survivors found that 42% of the participants did not receive information regarding late and long-term effects of their cancer or its treatment, and 50% believed they did not receive detailed information about lifestyle recommendations to help them stay healthy in the future, or details related to emotional and social support.3 The inability to communicate effectively as health care providers is a major contributor to the unmet needs described by cancer survivors. A lack of
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FIGURE 1. Institute of Medicine (IOM) components of survivorship care. Data from the Institute of Medicine,6 Grant et al.,7 and Aziz and Rowland.8
understanding and misinterpretations by physicians, nurses, patients, and family members have contributed to feelings of confusion and vulnerability described by patients and families at the end of treatment.4 This article focuses on communication needs that relate to transitioning care for cancer survivors based on the National Cancer Institute (NCI) Patient-Centered Communication (PCC) model.5 Barriers to effective communication and how assessment and interventions can help provide opportunities for patients to participate in their care and improve the patient, family caregiver, and nurse relationship will be discussed. The role of Survivorship Care Plan (SCP) in promoting communication will be discussed. The seminal Institute of Medicine (IOM) report from 2005, “Cancer Patient to Cancer Survivor: Lost in Transition” described the components of providing quality survivorship care and this report remains the gold standard.6 Communication was identified as a lynch pin for the four components recommended for quality survivorship care. Prevention, detection, surveillance, and interventions are the components related to quality survivorship care, with communication as central to SCPs because they are a vehicle to provide patients with the information needed to meet follow- up recommendations. An NCI-supported education program for nurses emphasizes that coordination is communication and should be the first component of quality survivorship care. Figure 1 provides a visual
illustration of why the component of communication should be a priority in the process of survivorship care (Fig. 1).6-8 Understanding how communication occurs between clinicians, patients, and families, and how communication contributes to improved outcomes, has become a priority in efforts to provide effective and cost-efficient health care. Follow-up care is paramount because of the growing numbers of cancer patients and survivors.9 Significant efforts are taking place to educate clinicians about communication concepts that impact the clinician, patient, and family relationship and the barriers that can prevent effective communication.10 The NCI published a monograph or framework to describe PCC that will improve health outcomes and encourage interactive communication between patients, clinicians, and families.5 Three important keys to communication include: (1) patient-centered care, (2) provision of opportunities for patients to participate in their care, and (3) enhancement of the patient-clinician relationship.5 There are six core functions associated with patient– clinician communication that work together to help improve communication with the goal of improving health outcomes (Fig. 2).5 The six core functions are: (1) Exchanging Information (2) Making Decisions (3) Fostering healing relationships
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FIGURE 2. Six core functions of patient-clinician communication.5
(4) Enabling patient self-management (5) Managing uncertainty (6) Responding to emotions. The focus of PCC is especially important in survivorship care. The goals of clinician–patient communication are accomplished jointly and are meant to build trust, respect, and commitment with the alignment of the understanding between patient/ family and clinician.9,11 This communication is developed around interactive communication where there is active effort toward communicating and understanding concerns and goals of care and where participation in the process is reciprocated between patient/family and clinician. This is a dynamic process that changes over time as values and goals change.
COMMUNICATION BARRIERS AND GAPS Patient-centered care is focused on the contextual factors that moderate the patient’s as well as the clinician’s communication patterns. Understanding how the patient feels and how clinicians feel related to an experience requires an interactive process of validating perspectives, concerns, and feelings, and aligning the information in a way that meets the patient’s needs.12,13 Research has been clear that survivors’ psychosocial needs are unmet, primarily because they are not communicated by the patients for fear that their psychosocial concerns are not important, or the clinician may not ask about their psychosocial needs, or may min-
imize or ignore them if voiced because they are unsure how to manage them.14 Patients are concerned that reporting emotional symptoms to their clinician may negatively affect their long-term relationships with their clinician.4 Recognizing that patients may not directly express emotions will help clinicians observe for non-verbal or indirect communication strategies.15 Patients need clinicians to pay attention to their psychosocial needs and to encourage them to communicate so that resources can be accessed to improve satisfaction and outcomes of survivorship care.14 Additional situations that may provide barriers to communication include managing relationships where patients have become dependent on their health care providers. Patients have depended on their nurse and their physician to get them through this treatment. Now that treatment is completed, recognizing their feelings and helping them develop skills to cope for their future takes time.16 New emotions may arise as the patient transitions from active treatment to follow-up. Survivors may experience increased anxiety as they try to anticipate who they should contact for follow-up. It is helpful for the health care provider to clarify who is responsible for their health care issues and how to manage their care in the future.17 Clinicians prevent communication when they seem rushed and unavailable and unwilling to discuss prognosis or end-of-life issues.14 Considering ways in which this process can be anticipated helps identify potential issues so that providers can prevent problems. Thorne et al.16 identified areas related
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to ending treatment that help clinicians communicate with the patient. It is important to remember that patients not only listen to words, but also body language, facial expressions, and tone of voice. For instance, when patients complete therapy some settings provide end-of-treatment celebrations with cakes or certificates. The clinicians believe they are helping to celebrate something that has ended. But the reality is providers often know that the risk of recurrence is high for certain diseases and patients likely know that as well. When the patient is unsure of what comes next this contributes to feelings of insecurity and vulnerability. Clinician statements like, “You’re good to go” or “You’re done with treatment” leaves patients worried and concerned about what to do to prevent recurrence.4 Clinician’s miscommunications or failure to recognize emotional distress may inadvertently contribute to feelings of loss and abandonment for cancer survivors, increasing anxiety and feelings of vulnerability.18 Changing visit routines from every 1 to 3 weeks, something they may have been doing for 3 to 6 months, to now following a less frequent follow-up visit schedule can be seen by the clinician as making life easier but to the survivor, this may create a sense of abandonment. Additional barriers that compound the communication issues above are related to specific populations where culture and ethnicity are different from the clinicians. Lack of trust in the health care system or concern about the competence of the providers broadens the gap in communication. Although two studies have reported there is no difference in patient’s satisfaction in comparing specialist survivorship care versus primary careprovided survivorship care, additional studies are needed.19,20 Survivors require active participation in communication and anticipation of needs, especially for non-English–speaking patients whose cultural aspects of communication must be considered.
PATIENTS’ AND PROVIDERS’ PERCEPTIONS OF COMMUNICATION Oncology nurses must pay attention to specific cues that will help prevent communication issues in the future. Oncology nurses must anticipate conversations or experiences that they expect to be stressful and emotional for patients.4 Asking about past experiences can help understand survivors’
future needs. When transitioning to another treatment or end of treatment, it is important to start discussing the plan as early as possible.4,17,21 Communication is an ongoing process as patient’s goals and problems change over time.5,18 Communicating when prognosis is uncertain increases the difficulty because it may include multiple scenarios to anticipant future needs.22 Patients may avoid serious discussions about prognosis or followup planning. They are also hesitant to share negative emotions with their clinicians and, as a result, some clinicians may not recognize the emotional concerns of the patient.15,18,20 Introducing survivorship care early in the course of their disease helps to communicate knowledge and trust to patients and also helps the health care team know what to expect.4
COMMUNICATION AND PSYCHOSOCIAL NEEDS OF CANCER SURVIVORS PCC requires a mutual understanding of the goals of care. During the survivorship phase, patients may be less likely to openly share their fear of recurrence or the emotional concerns related to the uncertainty they may experience.15 It is important for patients to understand their current disease status and their long-term risks related to their disease or treatment. Terminology for this phase is confusing; what does remission mean? Is remission the same as being cured? These are very common questions survivors may ask. Families may have different concerns and need to be included during this transition for communication concerns as well.5 Assessing communication needs between clinicians–patients and family members are a necessary starting point to achieve effective outcomes. Miscommunication in oncology care has led to major difficulties, especially in the transition phase to cancer survivorship. The need for survivorship care planning makes intuitive sense because communication is the most important goal of the treatment summary and SCP and can improve the coordination of care, identify long-term and late effects, and help improve patient outcomes.23
COMMUNICATION ABOUT SURVIVORSHIP CARE PLANNING Providing a treatment summary and SCP has been recommended to help improve coordination and
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communication for cancer survivors and their clinicians.11,24 Studies have shown an increase in knowledge by survivors who received SCPs and, most importantly, a change in patients’ health behaviors, which led to better compliance with surveillance and follow-up recommendations.7,25 The difficulty is the lack of consistency of providing SCPs and treatment summaries to cancer survivors and the varying information provided.13 Although there are significant barriers impacting the ability of clinicians to provide SCPs, improving communication will have a significant impact on cancer survivorship care.
COMMUNICATION ASSESSMENT The NCI’s Patient-Centered Communication in Cancer Care monograph describes communication tasks and functions that are relevant during the survivorship period.5 As discussed previously, this model consists of six overlapping functions that serve as a framework for identifying communication assessment strategies relevant during the early transition period (Fig. 2). McCormack and colleagues26 used this model to develop measurement domains organized under the six functions of PCC, which can serve as a guide for developing PCC measures and interventions. These domains illustrate the importance of collaborative relationships and the interactive nature of communication among patients, families, and clinicians. Mazor and colleagues27 used the NCI PatientCentered Communication model as a framework for a new communication measure, the Patient Assessment of Cancer Communication Experience (PACE) to assess the patient’s perspective of communication over the course of cancer care. Their survey included five items focusing on the period after treatment was completed. Their study found that a large number of respondents endorsed suboptimal ratings to items dealing with difficult feelings and emotions and coping with uncertainty when treatment was completed.27 Similarly, the 2012 Health Information National Trends Survey (HINTS) found that cancer survivors reported suboptimal communication in the PCC functions of managing uncertainty and responding to emotional concerns.28 Although provision of a SCP is thought to enhance patient–clinician communication, the HINTS found that receipt of a treatment summary was not associated with clinicians addressing emotional needs. Therefore, a targeted approach to
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address this communication gap is needed. Four functions of the NCI Patient-Centered Communication model and associated strategies to address psychosocial concerns and other common tasks are discussed here. These functions include the following: (a) responding to emotions, (b) managing uncertainty, (c) exchanging information, and (d) enabling self-management (Table 1). Responding to Emotions A major challenge for clinicians working with cancer patients and families is recognizing emotional distress. Clinicians frequently do not recognize emotional cues or may not respond appropriately if concerns are raised. Further, patients may be unwilling to disclose their emotions for various reasons, including believing that fear and anxiety are unavoidable with a cancer diagnosis and uncertainty about the clinician’s role in this domain.18,26 Measurement domains for the Responding to Emotions function include identifying, exploring, and validating emotions; assessing psychological distress; and providing tangible help.26 Dean and Street18 developed a 3-stage model of PCC consisting of recognition, exploration, and therapeutic action to assist clinicians in managing emotional distress. Recognizing emotional distress requires both cognitive strategies, such as mindful practice and selfawareness, and facilitative communication strategies, such as active listening and rapport building skills. Research supports that mindfulness is associated with delivering patient-centered care and higherquality communication.29 Including patient-reported outcome assessments into follow-up appointments improves symptom management, communication, and identification of psychosocial concerns.30 Clinicians should systematically assess for anxiety and depression using brief screening tools such as PROMIS instruments.26,31 In the exploration stage, clinicians should elicit emotional concerns, assess preferences for dealing with distress, and use empathic phrases to encourage patient disclosure.18 Providing reassurance about commitment to the patient can address fear of abandonment and is part of the Fostering Healing Relationships function in the PCC model.5,32 In the therapeutic action stage, clinicians can identify resources and interventions such as referrals to support groups, counselling, or stress-management modalities.26 Referrals to peer support groups or lay navigators may provide a source of emotional and informational support to survivors.21 Assessment should be ongoing in the context of a supportive
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TABLE 1. Patient-Centered Communication Strategies for Cancer Survivors Function
Domains • Assess and recognize emotional distress • Validate emotions; express empathy and support • Provide tangible help for dealing with emotions
Strategies • • • • •
Managing uncertainty
• Assess and understand source of uncertainty • Use emotion-focused management strategies • Use problem-focused management strategies
Exchanging information
• • • • • • • •
Enabling self-management
Explore knowledge, beliefs, and information needs Share information Provide information and help survivors evaluate resources Facilitate understanding Learn and assess survivors’ motivation and ability to self-manage Share, prioritize, and plan based on survivor’s needs and priorities Prepare, implement, and assist Arrange, follow-up, and assist with navigating the system
• • • • • • • • • • • •
Data from Epstein and Street,5 Dean and Street,18 and McCormack et al.26
Ask about survivor’s concerns and worries; clarify understanding Listen for verbal and non-verbal cues; avoid interruptions Provide realistic reassurance; eg, quality-of-life issues; commitment to support survivor Provide information; explore preferences for dealing with distress. Identify resources and facilitate referrals; eg, support groups, mindfulness-based practices; behavioral health Address anxiety caused by uncertainty Provide reassurance and information based on preferences Formulate a plan to reduce uncertainty; eg, decision trees Recommend resources and facilitate referrals Assess survivor’s understanding; use everyday language Help survivor articulate information needs and preferences Use support materials and encourage note-taking Tailor guidance; address psychosocial issues and barriers that impact self-management Collaborate on goals, plans, and priorities Teach self-care, problem-solving skills, and support for symptom management; lifestyle modifications Reassess progress and goals; update plan at each visit Share SCP with primary care and other providers
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Responding to emotions
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relationship because studies support that patients may accept referrals to counselling services only after repeat screening.33 Managing Uncertainty Managing uncertainty is one function particularly relevant during the transition period from active treatment. Measurement domains for uncertainty consist of defining and understanding uncertainty (cognitive), emotion-focused strategies (affective), and problem-focused management strategies (behavioral).26 Clinicians should explore the source and meaning of uncertainty with the survivor. Emotion-focused strategies involve addressing the anxiety caused by uncertainty. Problemfocused strategies involve creating a plan to manage the uncertainty, such as discussing contingency plans and timelines for surveillance testing.26 The 2012 HINTS survey found that receipt of a treatment summary was associated with higher PCC for exchanging information, managing uncertainty, and enabling self-management.34 Clinicians should convey information on the SCP, including followup surveillance schedule and symptoms to report that may promote a sense of control and assist in managing uncertainty during the survivorship period.18 Exchanging Information This task is important because survivors have information needs related to their plan of care and may not be clear about the roles of various providers. Measurement domains consist of exploring information needs and preferences, providing and helping survivors evaluate information and resources, and assessing survivors’ understanding.26 To facilitate understanding, the clinician can use everyday language, ask patients to restate information, and allow adequate time for discussion.4,5 Clarifying roles and expectations between the oncologist and the primary care provider is a priority so the survivor understands who is responsible for various aspects of their follow-up care.16,35 The timing of delivery of information should be tailored because survivors may be overwhelmed if too much information is given too early.35 In a qualitative study assessing cancer survivors’ communication preferences, survivors expressed the need for anticipatory guidance during the treatment phase to prepare them for commonly experienced emotional and physical symptoms during the transition from active treatment.4 The discussion of lifestyle issues and goals are a key part
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of survivorship care planning and can be framed within the enabling self-management function. Enabling Self-Management Self-management involves helping survivors to problem-solve, set goals, and take action to improve their health.5 The domains within this function include sharing and advising; prioritizing, planning, and assisting; and follow-up.26 Clinicians should assess the survivors’ level of motivation and ability to self-manage. They should collaboratively decide on goals and priorities for self-care skills such as symptom management and lifestyle changes to reduce risk of cancer recurrence. The clinician assists with communicating needs to other team members and should revisit goals and barriers to achieving goals in subsequent encounters. For example, the oncology clinician can contact the primary care provider to discuss psychosocial or clinical issues that may impact comorbidity management and, at a minimum, forward a copy of the treatment summary/SCP and contact information for the oncology team if questions arise.21
COMMUNICATION INTERVENTIONS Effective provider–survivor communication relies on the skills and behavior of both survivors and clinicians so it is important to design interventions focusing on both groups.5,36 Strategies with a communication focus targeting survivors may include use of question prompt sheets, teaching patients to write and prioritize concerns, coaching interventions, and on-line education tools. 37 The clinicians’ ability to manage uncertainty and address emotions plays a main role in survivors’ willingness to discuss their symptoms.36 Interventions addressing psychosocial concerns will be described in this section. Fear of recurrence is a common problem among survivors and few evidence-based interventions are implemented to address this concern in practice.38,39 A pilot randomized control trial tested a coaching intervention using prompt sheets and telephone counselling to encourage breast cancer survivors to talk to their oncologists about fear of recurrence and emotional concerns.40 The study found that use of prompt sheets and coaching improved self-efficacy (which was associated with reduced anxiety), and encouraged survivors to address emotional concerns with their providers.40 Other studies in colorectal cancer survivors have
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incorporated question prompt sheets to facilitate communication.41,42 A pilot study in gynecologic cancer survivors using the Guided SelfDetermination framework included advanced communication skills training (CST) for nurses and reflection sheets to elicit survivors’ expression of challenges faced. Symptom sheets were later added because the survivors’ lack of knowledge about symptoms to report was associated with feeling out of control.43 Discussing symptoms with primary care providers provides reassurance about cancer recurrence.14 Encouraging survivors to follow-up by phone regarding symptom concerns and management strategies is a proactive approach because survivors are seen less frequently after treatment ends.36 An on-line intervention entitled “COPE” was designed to encourage expression of emotional concerns in patients with advanced cancer. It incorporates cognitive–behavioral strategies and includes training videos, a 4-step communication process for expressing concerns; talking with significant others about emotional concerns, and tailored feedback.37 Communication Skills Training Various CST courses have been implemented targeting health care clinicians, patients, and palliative care teams.10,44,45 A recent review was conducted to assess whether CST improved clinicians’ communication skills and patients’ health status.10 The majority of studies sought to train clinicians in general communication skills with a few studies targeting responding to emotional needs.46 Overall, CST improved information-gathering communication skills (open-ended questions) and supportive skills (such as providing empathy). Similar to other reviews, the researchers found that evidence for beneficial effects on patient outcomes is lacking.10 A few studies address communication around survivorship care planning in patients with lymphoma.47,48 Physicians completed a CST workshop consisting of didactic presentations, exemplary video, role play, and reflective discussion. Evalu-
ation of skills was based on recorded standardized patient assessments. The intervention showed significant improvements in self-efficacy and uptake of tasks and communications skills related to survivorship transition. However, no improvement was seen in discussion of social issues.48 Further research is needed, including randomized trials using validated scales that include outcomes focusing on the clinician, patient, and family.10 The paradigm focusing on “communication skills” training may need to be expanded to incorporate contextual aspects such as clinicians’ judgments about the relationship and goals of care, while incorporating mindfulness and reflection in communication with patients.49 Communication training that includes principles of mindfulness, relating, and teambased processes may serve as models for designing research-based interventions for survivorship care planning.18,45 Conclusion The impact and challenges of delivering PCC in survivorship care is described here. The willingness to discuss and address survivors’ needs continues to be a necessary component of survivorship care and requires the clinician to be knowledgeable and sensitive to the survivors’ and caregivers’ descriptions of needs. Recognizing the clinician’s and survivors’ communication styles and awareness of how survivors may perceive the information that is being shared is important. Communication interventions targeting clinicians, survivors, and families are needed to facilitate a holistic communication process. PCC provides a guideline for educational interventions to aid clinicians in communication skills that will impact the care of survivors by accurately identifying their concerns and providing a mechanism such as the SCPs to share that information.5,11,23 Further research is needed on communication models and intervention strategies to address psychosocial and emotional concerns of cancer survivors and their impact on patient outcomes.
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for oncology nurses. Transl Behav Med. 2017;doi:10.1007/ s13142-017-0473-5. Epub ahead of print. 45. Wittenberg E, Ferrell B, Goldsmith J, Ragan SL, Paice J. Assessment of a statewide palliative care team training course: COMFORT communication for palliative care teams. J Palliat Med. 2016;19:746-752. 46. Pehrson C, Banerjee SC, Manna R, et al. Responding empathically to patients: development, implementation, and evaluation of a communication skills training module for oncology nurses. Patient Educ Couns. 2016;99:610-616. 47. Parker PA, Banerjee SC, Matasar MJ, et al. Protocol for a cluster randomised trial of a communication skills intervention for physicians to facilitate survivorship transition in patients with lymphoma. BMJ Open. 2016;6:e011581;doi:10.1136/ bmjopen-2016-011581. 48. Banerjee SC, Matasar MJ, Bylund CL, et al. Survivorship care planning after participation in communication skills training intervention for a consultation about lymphoma survivorship. Transl Behav Med. 2015;5:393-400. 49. Salmon P, Young B. A new paradigm for clinical communication: critical review of literature in cancer care. Med Educ. 2017;51:258-268.
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COMMUNICATION CONCERNS WHEN TRANSITIONING TO CANCER SURVIVORSHIP CARE DENICE ECONOMOU AND ANNE REB OBJECTIVES: To discuss communication needs that relate to transitioning care for cancer survivors and strategies to facilitate patient-centered communication.
DATA SOURCES: National Cancer Institute monograph and peer reviewed articles related to survivorship and communication.
CONCLUSION: Key communication tasks in survivorship include managing uncertainty, exchanging information, and enabling self-management. These tasks inform assessment strategies and interventions in survivorship care planning. Communication training must target survivors and providers given the reciprocal and interactive nature of communication.
IMPLICATIONS FOR NURSING PRACTICE: Implications for Nursing Practice: Nurses need to evaluate survivors’ concerns and incorporate communication strategies in survivorship care planning to reduce distress and facilitate the exchange of information to improve referrals to supportive care resources.
KEY WORDS: patient-centered communication, survivorship care planning, transition of care, communication strategies, communication skills training, psychosocial concerns.
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ransitioning cancer patients from active treatment to survivorship follow-up care can be a stressful time for patients, families, and health care providers. The literature has documented that health care providers have often not prepared survivors for life after Denice Economou, RN, MN, CHPN: Senior Research Nurse Specialist, City of Hope, Duarte CA. Anne Reb, NP, PhD: Assistant Professor, City of Hope, Duarte CA. Address correspondence to Denice Economou, RN, MN, CHPN, 1500 E. Duarte Road, Duarte, CA 91010. e-mail: [email protected] © 2017 Elsevier Inc. All rights reserved. 0749-2081 https://doi.org/10.1016/j.soncn.2017.10.001
cancer.1 A recent study evaluated the unmet needs of cancer survivors and found the highest ranked unmet needs identified by over 50% of the participants were about lack of information and fear of recurrence.2 Another study evaluating the quality of communication between providers and survivors found that 42% of the participants did not receive information regarding late and long-term effects of their cancer or its treatment, and 50% believed they did not receive detailed information about lifestyle recommendations to help them stay healthy in the future, or details related to emotional and social support.3 The inability to communicate effectively as health care providers is a major contributor to the unmet needs described by cancer survivors. A lack of
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FIGURE 1. Institute of Medicine (IOM) components of survivorship care. Data from the Institute of Medicine,6 Grant et al.,7 and Aziz and Rowland.8
understanding and misinterpretations by physicians, nurses, patients, and family members have contributed to feelings of confusion and vulnerability described by patients and families at the end of treatment.4 This article focuses on communication needs that relate to transitioning care for cancer survivors based on the National Cancer Institute (NCI) Patient-Centered Communication (PCC) model.5 Barriers to effective communication and how assessment and interventions can help provide opportunities for patients to participate in their care and improve the patient, family caregiver, and nurse relationship will be discussed. The role of Survivorship Care Plan (SCP) in promoting communication will be discussed. The seminal Institute of Medicine (IOM) report from 2005, “Cancer Patient to Cancer Survivor: Lost in Transition” described the components of providing quality survivorship care and this report remains the gold standard.6 Communication was identified as a lynch pin for the four components recommended for quality survivorship care. Prevention, detection, surveillance, and interventions are the components related to quality survivorship care, with communication as central to SCPs because they are a vehicle to provide patients with the information needed to meet follow- up recommendations. An NCI-supported education program for nurses emphasizes that coordination is communication and should be the first component of quality survivorship care. Figure 1 provides a visual
illustration of why the component of communication should be a priority in the process of survivorship care (Fig. 1).6-8 Understanding how communication occurs between clinicians, patients, and families, and how communication contributes to improved outcomes, has become a priority in efforts to provide effective and cost-efficient health care. Follow-up care is paramount because of the growing numbers of cancer patients and survivors.9 Significant efforts are taking place to educate clinicians about communication concepts that impact the clinician, patient, and family relationship and the barriers that can prevent effective communication.10 The NCI published a monograph or framework to describe PCC that will improve health outcomes and encourage interactive communication between patients, clinicians, and families.5 Three important keys to communication include: (1) patient-centered care, (2) provision of opportunities for patients to participate in their care, and (3) enhancement of the patient-clinician relationship.5 There are six core functions associated with patient– clinician communication that work together to help improve communication with the goal of improving health outcomes (Fig. 2).5 The six core functions are: (1) Exchanging Information (2) Making Decisions (3) Fostering healing relationships
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FIGURE 2. Six core functions of patient-clinician communication.5
(4) Enabling patient self-management (5) Managing uncertainty (6) Responding to emotions. The focus of PCC is especially important in survivorship care. The goals of clinician–patient communication are accomplished jointly and are meant to build trust, respect, and commitment with the alignment of the understanding between patient/ family and clinician.9,11 This communication is developed around interactive communication where there is active effort toward communicating and understanding concerns and goals of care and where participation in the process is reciprocated between patient/family and clinician. This is a dynamic process that changes over time as values and goals change.
COMMUNICATION BARRIERS AND GAPS Patient-centered care is focused on the contextual factors that moderate the patient’s as well as the clinician’s communication patterns. Understanding how the patient feels and how clinicians feel related to an experience requires an interactive process of validating perspectives, concerns, and feelings, and aligning the information in a way that meets the patient’s needs.12,13 Research has been clear that survivors’ psychosocial needs are unmet, primarily because they are not communicated by the patients for fear that their psychosocial concerns are not important, or the clinician may not ask about their psychosocial needs, or may min-
imize or ignore them if voiced because they are unsure how to manage them.14 Patients are concerned that reporting emotional symptoms to their clinician may negatively affect their long-term relationships with their clinician.4 Recognizing that patients may not directly express emotions will help clinicians observe for non-verbal or indirect communication strategies.15 Patients need clinicians to pay attention to their psychosocial needs and to encourage them to communicate so that resources can be accessed to improve satisfaction and outcomes of survivorship care.14 Additional situations that may provide barriers to communication include managing relationships where patients have become dependent on their health care providers. Patients have depended on their nurse and their physician to get them through this treatment. Now that treatment is completed, recognizing their feelings and helping them develop skills to cope for their future takes time.16 New emotions may arise as the patient transitions from active treatment to follow-up. Survivors may experience increased anxiety as they try to anticipate who they should contact for follow-up. It is helpful for the health care provider to clarify who is responsible for their health care issues and how to manage their care in the future.17 Clinicians prevent communication when they seem rushed and unavailable and unwilling to discuss prognosis or end-of-life issues.14 Considering ways in which this process can be anticipated helps identify potential issues so that providers can prevent problems. Thorne et al.16 identified areas related
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to ending treatment that help clinicians communicate with the patient. It is important to remember that patients not only listen to words, but also body language, facial expressions, and tone of voice. For instance, when patients complete therapy some settings provide end-of-treatment celebrations with cakes or certificates. The clinicians believe they are helping to celebrate something that has ended. But the reality is providers often know that the risk of recurrence is high for certain diseases and patients likely know that as well. When the patient is unsure of what comes next this contributes to feelings of insecurity and vulnerability. Clinician statements like, “You’re good to go” or “You’re done with treatment” leaves patients worried and concerned about what to do to prevent recurrence.4 Clinician’s miscommunications or failure to recognize emotional distress may inadvertently contribute to feelings of loss and abandonment for cancer survivors, increasing anxiety and feelings of vulnerability.18 Changing visit routines from every 1 to 3 weeks, something they may have been doing for 3 to 6 months, to now following a less frequent follow-up visit schedule can be seen by the clinician as making life easier but to the survivor, this may create a sense of abandonment. Additional barriers that compound the communication issues above are related to specific populations where culture and ethnicity are different from the clinicians. Lack of trust in the health care system or concern about the competence of the providers broadens the gap in communication. Although two studies have reported there is no difference in patient’s satisfaction in comparing specialist survivorship care versus primary careprovided survivorship care, additional studies are needed.19,20 Survivors require active participation in communication and anticipation of needs, especially for non-English–speaking patients whose cultural aspects of communication must be considered.
PATIENTS’ AND PROVIDERS’ PERCEPTIONS OF COMMUNICATION Oncology nurses must pay attention to specific cues that will help prevent communication issues in the future. Oncology nurses must anticipate conversations or experiences that they expect to be stressful and emotional for patients.4 Asking about past experiences can help understand survivors’
future needs. When transitioning to another treatment or end of treatment, it is important to start discussing the plan as early as possible.4,17,21 Communication is an ongoing process as patient’s goals and problems change over time.5,18 Communicating when prognosis is uncertain increases the difficulty because it may include multiple scenarios to anticipant future needs.22 Patients may avoid serious discussions about prognosis or followup planning. They are also hesitant to share negative emotions with their clinicians and, as a result, some clinicians may not recognize the emotional concerns of the patient.15,18,20 Introducing survivorship care early in the course of their disease helps to communicate knowledge and trust to patients and also helps the health care team know what to expect.4
COMMUNICATION AND PSYCHOSOCIAL NEEDS OF CANCER SURVIVORS PCC requires a mutual understanding of the goals of care. During the survivorship phase, patients may be less likely to openly share their fear of recurrence or the emotional concerns related to the uncertainty they may experience.15 It is important for patients to understand their current disease status and their long-term risks related to their disease or treatment. Terminology for this phase is confusing; what does remission mean? Is remission the same as being cured? These are very common questions survivors may ask. Families may have different concerns and need to be included during this transition for communication concerns as well.5 Assessing communication needs between clinicians–patients and family members are a necessary starting point to achieve effective outcomes. Miscommunication in oncology care has led to major difficulties, especially in the transition phase to cancer survivorship. The need for survivorship care planning makes intuitive sense because communication is the most important goal of the treatment summary and SCP and can improve the coordination of care, identify long-term and late effects, and help improve patient outcomes.23
COMMUNICATION ABOUT SURVIVORSHIP CARE PLANNING Providing a treatment summary and SCP has been recommended to help improve coordination and
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communication for cancer survivors and their clinicians.11,24 Studies have shown an increase in knowledge by survivors who received SCPs and, most importantly, a change in patients’ health behaviors, which led to better compliance with surveillance and follow-up recommendations.7,25 The difficulty is the lack of consistency of providing SCPs and treatment summaries to cancer survivors and the varying information provided.13 Although there are significant barriers impacting the ability of clinicians to provide SCPs, improving communication will have a significant impact on cancer survivorship care.
COMMUNICATION ASSESSMENT The NCI’s Patient-Centered Communication in Cancer Care monograph describes communication tasks and functions that are relevant during the survivorship period.5 As discussed previously, this model consists of six overlapping functions that serve as a framework for identifying communication assessment strategies relevant during the early transition period (Fig. 2). McCormack and colleagues26 used this model to develop measurement domains organized under the six functions of PCC, which can serve as a guide for developing PCC measures and interventions. These domains illustrate the importance of collaborative relationships and the interactive nature of communication among patients, families, and clinicians. Mazor and colleagues27 used the NCI PatientCentered Communication model as a framework for a new communication measure, the Patient Assessment of Cancer Communication Experience (PACE) to assess the patient’s perspective of communication over the course of cancer care. Their survey included five items focusing on the period after treatment was completed. Their study found that a large number of respondents endorsed suboptimal ratings to items dealing with difficult feelings and emotions and coping with uncertainty when treatment was completed.27 Similarly, the 2012 Health Information National Trends Survey (HINTS) found that cancer survivors reported suboptimal communication in the PCC functions of managing uncertainty and responding to emotional concerns.28 Although provision of a SCP is thought to enhance patient–clinician communication, the HINTS found that receipt of a treatment summary was not associated with clinicians addressing emotional needs. Therefore, a targeted approach to
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address this communication gap is needed. Four functions of the NCI Patient-Centered Communication model and associated strategies to address psychosocial concerns and other common tasks are discussed here. These functions include the following: (a) responding to emotions, (b) managing uncertainty, (c) exchanging information, and (d) enabling self-management (Table 1). Responding to Emotions A major challenge for clinicians working with cancer patients and families is recognizing emotional distress. Clinicians frequently do not recognize emotional cues or may not respond appropriately if concerns are raised. Further, patients may be unwilling to disclose their emotions for various reasons, including believing that fear and anxiety are unavoidable with a cancer diagnosis and uncertainty about the clinician’s role in this domain.18,26 Measurement domains for the Responding to Emotions function include identifying, exploring, and validating emotions; assessing psychological distress; and providing tangible help.26 Dean and Street18 developed a 3-stage model of PCC consisting of recognition, exploration, and therapeutic action to assist clinicians in managing emotional distress. Recognizing emotional distress requires both cognitive strategies, such as mindful practice and selfawareness, and facilitative communication strategies, such as active listening and rapport building skills. Research supports that mindfulness is associated with delivering patient-centered care and higherquality communication.29 Including patient-reported outcome assessments into follow-up appointments improves symptom management, communication, and identification of psychosocial concerns.30 Clinicians should systematically assess for anxiety and depression using brief screening tools such as PROMIS instruments.26,31 In the exploration stage, clinicians should elicit emotional concerns, assess preferences for dealing with distress, and use empathic phrases to encourage patient disclosure.18 Providing reassurance about commitment to the patient can address fear of abandonment and is part of the Fostering Healing Relationships function in the PCC model.5,32 In the therapeutic action stage, clinicians can identify resources and interventions such as referrals to support groups, counselling, or stress-management modalities.26 Referrals to peer support groups or lay navigators may provide a source of emotional and informational support to survivors.21 Assessment should be ongoing in the context of a supportive
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TABLE 1. Patient-Centered Communication Strategies for Cancer Survivors Function
Domains • Assess and recognize emotional distress • Validate emotions; express empathy and support • Provide tangible help for dealing with emotions
Strategies • • • • •
Managing uncertainty
• Assess and understand source of uncertainty • Use emotion-focused management strategies • Use problem-focused management strategies
Exchanging information
• • • • • • • •
Enabling self-management
Explore knowledge, beliefs, and information needs Share information Provide information and help survivors evaluate resources Facilitate understanding Learn and assess survivors’ motivation and ability to self-manage Share, prioritize, and plan based on survivor’s needs and priorities Prepare, implement, and assist Arrange, follow-up, and assist with navigating the system
• • • • • • • • • • • •
Data from Epstein and Street,5 Dean and Street,18 and McCormack et al.26
Ask about survivor’s concerns and worries; clarify understanding Listen for verbal and non-verbal cues; avoid interruptions Provide realistic reassurance; eg, quality-of-life issues; commitment to support survivor Provide information; explore preferences for dealing with distress. Identify resources and facilitate referrals; eg, support groups, mindfulness-based practices; behavioral health Address anxiety caused by uncertainty Provide reassurance and information based on preferences Formulate a plan to reduce uncertainty; eg, decision trees Recommend resources and facilitate referrals Assess survivor’s understanding; use everyday language Help survivor articulate information needs and preferences Use support materials and encourage note-taking Tailor guidance; address psychosocial issues and barriers that impact self-management Collaborate on goals, plans, and priorities Teach self-care, problem-solving skills, and support for symptom management; lifestyle modifications Reassess progress and goals; update plan at each visit Share SCP with primary care and other providers
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Responding to emotions
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relationship because studies support that patients may accept referrals to counselling services only after repeat screening.33 Managing Uncertainty Managing uncertainty is one function particularly relevant during the transition period from active treatment. Measurement domains for uncertainty consist of defining and understanding uncertainty (cognitive), emotion-focused strategies (affective), and problem-focused management strategies (behavioral).26 Clinicians should explore the source and meaning of uncertainty with the survivor. Emotion-focused strategies involve addressing the anxiety caused by uncertainty. Problemfocused strategies involve creating a plan to manage the uncertainty, such as discussing contingency plans and timelines for surveillance testing.26 The 2012 HINTS survey found that receipt of a treatment summary was associated with higher PCC for exchanging information, managing uncertainty, and enabling self-management.34 Clinicians should convey information on the SCP, including followup surveillance schedule and symptoms to report that may promote a sense of control and assist in managing uncertainty during the survivorship period.18 Exchanging Information This task is important because survivors have information needs related to their plan of care and may not be clear about the roles of various providers. Measurement domains consist of exploring information needs and preferences, providing and helping survivors evaluate information and resources, and assessing survivors’ understanding.26 To facilitate understanding, the clinician can use everyday language, ask patients to restate information, and allow adequate time for discussion.4,5 Clarifying roles and expectations between the oncologist and the primary care provider is a priority so the survivor understands who is responsible for various aspects of their follow-up care.16,35 The timing of delivery of information should be tailored because survivors may be overwhelmed if too much information is given too early.35 In a qualitative study assessing cancer survivors’ communication preferences, survivors expressed the need for anticipatory guidance during the treatment phase to prepare them for commonly experienced emotional and physical symptoms during the transition from active treatment.4 The discussion of lifestyle issues and goals are a key part
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of survivorship care planning and can be framed within the enabling self-management function. Enabling Self-Management Self-management involves helping survivors to problem-solve, set goals, and take action to improve their health.5 The domains within this function include sharing and advising; prioritizing, planning, and assisting; and follow-up.26 Clinicians should assess the survivors’ level of motivation and ability to self-manage. They should collaboratively decide on goals and priorities for self-care skills such as symptom management and lifestyle changes to reduce risk of cancer recurrence. The clinician assists with communicating needs to other team members and should revisit goals and barriers to achieving goals in subsequent encounters. For example, the oncology clinician can contact the primary care provider to discuss psychosocial or clinical issues that may impact comorbidity management and, at a minimum, forward a copy of the treatment summary/SCP and contact information for the oncology team if questions arise.21
COMMUNICATION INTERVENTIONS Effective provider–survivor communication relies on the skills and behavior of both survivors and clinicians so it is important to design interventions focusing on both groups.5,36 Strategies with a communication focus targeting survivors may include use of question prompt sheets, teaching patients to write and prioritize concerns, coaching interventions, and on-line education tools. 37 The clinicians’ ability to manage uncertainty and address emotions plays a main role in survivors’ willingness to discuss their symptoms.36 Interventions addressing psychosocial concerns will be described in this section. Fear of recurrence is a common problem among survivors and few evidence-based interventions are implemented to address this concern in practice.38,39 A pilot randomized control trial tested a coaching intervention using prompt sheets and telephone counselling to encourage breast cancer survivors to talk to their oncologists about fear of recurrence and emotional concerns.40 The study found that use of prompt sheets and coaching improved self-efficacy (which was associated with reduced anxiety), and encouraged survivors to address emotional concerns with their providers.40 Other studies in colorectal cancer survivors have
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incorporated question prompt sheets to facilitate communication.41,42 A pilot study in gynecologic cancer survivors using the Guided SelfDetermination framework included advanced communication skills training (CST) for nurses and reflection sheets to elicit survivors’ expression of challenges faced. Symptom sheets were later added because the survivors’ lack of knowledge about symptoms to report was associated with feeling out of control.43 Discussing symptoms with primary care providers provides reassurance about cancer recurrence.14 Encouraging survivors to follow-up by phone regarding symptom concerns and management strategies is a proactive approach because survivors are seen less frequently after treatment ends.36 An on-line intervention entitled “COPE” was designed to encourage expression of emotional concerns in patients with advanced cancer. It incorporates cognitive–behavioral strategies and includes training videos, a 4-step communication process for expressing concerns; talking with significant others about emotional concerns, and tailored feedback.37 Communication Skills Training Various CST courses have been implemented targeting health care clinicians, patients, and palliative care teams.10,44,45 A recent review was conducted to assess whether CST improved clinicians’ communication skills and patients’ health status.10 The majority of studies sought to train clinicians in general communication skills with a few studies targeting responding to emotional needs.46 Overall, CST improved information-gathering communication skills (open-ended questions) and supportive skills (such as providing empathy). Similar to other reviews, the researchers found that evidence for beneficial effects on patient outcomes is lacking.10 A few studies address communication around survivorship care planning in patients with lymphoma.47,48 Physicians completed a CST workshop consisting of didactic presentations, exemplary video, role play, and reflective discussion. Evalu-
ation of skills was based on recorded standardized patient assessments. The intervention showed significant improvements in self-efficacy and uptake of tasks and communications skills related to survivorship transition. However, no improvement was seen in discussion of social issues.48 Further research is needed, including randomized trials using validated scales that include outcomes focusing on the clinician, patient, and family.10 The paradigm focusing on “communication skills” training may need to be expanded to incorporate contextual aspects such as clinicians’ judgments about the relationship and goals of care, while incorporating mindfulness and reflection in communication with patients.49 Communication training that includes principles of mindfulness, relating, and teambased processes may serve as models for designing research-based interventions for survivorship care planning.18,45 Conclusion The impact and challenges of delivering PCC in survivorship care is described here. The willingness to discuss and address survivors’ needs continues to be a necessary component of survivorship care and requires the clinician to be knowledgeable and sensitive to the survivors’ and caregivers’ descriptions of needs. Recognizing the clinician’s and survivors’ communication styles and awareness of how survivors may perceive the information that is being shared is important. Communication interventions targeting clinicians, survivors, and families are needed to facilitate a holistic communication process. PCC provides a guideline for educational interventions to aid clinicians in communication skills that will impact the care of survivors by accurately identifying their concerns and providing a mechanism such as the SCPs to share that information.5,11,23 Further research is needed on communication models and intervention strategies to address psychosocial and emotional concerns of cancer survivors and their impact on patient outcomes.
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