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Quality of Life in Head and Neck Cancer Patient-Caregiver Dyads: A Systematic Review

Sterba, Katherine Regan PhD, MPH; Zapka, Jane ScD; Cranos, Caroline MPH; Laursen, Ashley BSN; Day, Terry A. MD

doi: 10.1097/NCC.0000000000000281
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Background: As we learn about patient experiences with head and neck cancer, it is also important to consider caregivers so that family-centered care can be improved.

Objectives: The purpose of this systematic review was to (a) identify the research questions, methods, and measures that have been examined in quality-of-life studies with head and neck cancer patients and their caregivers (dyads) and (b) identify gaps and future directions for research and practice.

Methods: We conducted a systematic search of electronic databases using keywords (head and neck cancer, caregiver, quality of life) and included studies that assessed quality of life–related constructs in both patients and caregivers. A dyadic quality-of-life conceptual model guided the summary of observations.

Results: Thirteen studies met eligibility criteria. The most common research questions included comparing patient and caregiver quality of life, examining relationships between personal and clinical factors in 1 dyad member and a quality-of-life outcome in the other, and exploring relationships between interpersonal processes and quality of life. Psychological quality-of-life constructs were most commonly studied. There was substantial variability in study findings, in part due to differences in study questions and samples.

Conclusions: Future research is needed to examine longitudinal interpersonal processes in head and neck cancer. Unique caregiving tasks should be inventoried, and dyadic data analysis techniques should be used.

Implications for Practice: Head and neck cancer dramatically affects quality of life in patients and caregivers, and quality clinical care requires a dyadic focus. Oncology nurses have a unique opportunity to develop and implement dyadic illness management models for head and neck cancer.

Author Affiliations: Department of Public Health Sciences, Medical University of South Carolina, Charleston (Drs Sterba and Zapka); Division of Preventive and Behavioral Medicine, University of Massachusetts Medical School, Worcester (Ms Cranos); and Department of Otolaryngology–Head and Neck Surgery, Medical University of South Carolina, Charleston (Ms Laursen and Dr Day).

The authors have no conflicts of interest to disclose.

K.R.S. and J.Z.’s work on this article was supported by a Mentored Research Scholar Grant in Applied and Clinical Research, MRSG-12-221-01-CPPB from the American Cancer Society.

Correspondence: Katherine Regan Sterba, PhD, MPH, Department of Public Health Sciences, Medical University of South Carolina, MSC 955, Charleston, SC 29425 (sterba@musc.edu).

Accepted for publication April 24, 2015.

Head and neck cancer (HNC), including cancers of the larynx, oral cavity, and pharynx, represent 3% of all new cancer cases diagnosed in the United States; approximately 55 070 new cases and 12 000 deaths from HNC are expected in 2014.1 Head and neck cancer and its treatments affect breathing, communication, swallowing, and physical appearance; these adverse effects are of critical importance for nursing care during the survivorship period as they dramatically influence physical, emotional, and social quality of life (QoL) (for example, see References 2–9). A growing field of research has established that the multidimensional construct of QoL in patients is influenced and can be compromised by clinical, sociodemographic, and behavioral factors (for example, see References 3,6,7,10).

As we learn more about QoL experiences in HNC patients, it is important to acknowledge that cancer also impacts caregivers.11 The behaviors and emotions of those in close relationships are interdependent,12,13 and research to better understand the roles and concerns of both cancer patients and their caregivers, or dyads, is growing.14–16 The interpersonal context of HNC may be particularly taxing because critical roles and relationships can change because of illness effects on social functioning (eg, communication, eating). For example, a recent review examined the psychological functioning of HNC caregivers, finding that caregivers experience worse psychological health compared with patients and highlighting the 6-month period following diagnosis as high risk for distress.17 However, several studies in this review included only the patient or the caregiver, missing the opportunity to consider interpersonal QoL processes. While research in intervention development for cancer dyads is increasing,18 the field is only emerging, and there has been little work addressing the unique challenges of HNC.

To extend this area of research, the purpose of this article is to review and summarize studies investigating QoL in HNC patient-caregiver dyads. We included only those studies in which both HNC patients and caregivers were studied and characterized the primary research questions and methodological features (ie, study designs, measures, data analysis techniques) and findings of existing research. We defined QoL broadly as physical, psychological, social, or spiritual well-being19 and used a dyadic conceptual model to organize findings and then summarized the limitations of the research and implications for future research and clinical practice.

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Methods

We conducted an electronic search of PubMed, PsychINFO, and the Cumulative Index to Nursing and Allied Health Literature databases using the following sets of key words matched to the appropriate database terms: head and neck cancer AND caregiver (OR partner OR spouse OR dyad OR carer) AND quality-of-life (OR physical, psychological, social or spiritual well-being OR anxiety OR stress OR distress) from the origination date of each database to November 2014. Because of the early state of this research field, we sought to broadly define QoL. Therefore, the QoL keywords were focused on the 4 broad QoL domains19 and also included anxiety, stress, and distress, which have been studied most commonly in this area of research.17 Studies were included when they examined a QoL construct (broadly defined as physical, emotional, social, and spiritual well-being) or factors associated with QoL in both HNC patients and caregivers. We limited this review to quantitative studies with the objective of investigating which QoL constructs have been studied in HNC dyads. Therefore, studies were excluded when they did not include patients with HNC (ie, cancers of the upper aerodigestive tract including larynx, oral cavity, and pharynx), when they used only qualitative methodology or when they did not directly assess a similar QoL-related construct in both patients and caregivers.

All abstracts were reviewed and screened for eligibility, duplicates were removed, and full-text articles were retrieved. Three reviewers pretested a data abstraction form with 4 articles and made revisions. Guided by the reporting strategies recommended in PRISMA,20 1 reviewer abstracted data from each article in the areas of dyadic research aims, study design, data collection, participant characteristics, sample size/response rates, data analysis, measures, and findings. We reviewed the research questions that were considered dyadic in nature or examined a similar QoL construct in both patients and their caregivers. After initial data abstraction by 1 investigator, a second investigator reviewed and confirmed data abstraction fields for all articles; all discrepancies were discussed, and consensus was reached by group process.

We used a dyadic conceptual model to guide our analysis (Figure 1). This model was developed building on previous work in chronic illness and cancer promoting an understanding of how couples manage illness as a team.15,16,21–23 Implicit in this model are several themes from the dyadic coping literature as patients and caregivers face HNC together as a team, including that dyadic coping is dynamic and dependent on illness-related factors and that dyad should be the unit of analysis.13 We present a simplified model to guide our understanding and to highlight potential relationships among intrapersonal characteristics in patients and caregivers (eg, age, race, clinical factors, attitudes) and interpersonal processes (eg, communication, interactions) in HNC patients and caregivers and consider how these factors may play a role in HNC management and impact QoL-related outcomes. As described above, we broadly conceptualized QoL and also included QoL-related factors to explore what has been studied to date in this emerging field. We used this model to describe the scope of the literature and highlight research implications.

Figure 1

Figure 1

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Results

A total of 158 citations were initially identified (Figure 2). Thirty-two duplicate citations were removed, and abstracts were reviewed for the remaining 126 citations. The majority of articles were eliminated at this stage or after the full-text article was reviewed for 1 or more reasons (they did not focus on HNC patients, used qualitative methodology, and/or did not directly assess the same QoL-related construct in both patients and caregivers). Thirteen articles were retained for inclusion and underwent full review and data abstraction.24–36 Studies were published between 1999 and 2014 with the majority (10/13) after 2007. Approximately 60% of studies (n = 7/11 unique samples) were conducted outside the United States. The Table summarizes the aims, methods, and findings of each study.

Figure 2

Figure 2

Dyadic Research Aims. Three main dyadic research aims were examined in studies. The most common type of research aim focused on comparing a patient and caregiver QoL factor (13/13; pathway A; Figure 1). The 2 other research aim types included the examination of relationships between personal and clinical factors in 1 dyad member and a QoL outcome in the other (eg, patient symptoms and caregiver distress) (8/13; pathway B; Figure 1) and the examination of an interpersonal process (eg, communication) and its relationship to a QoL outcome in patients and/or caregivers (4/13; pathway C; Figure 1).

Study Design Elements. More than half of the studies cited a guiding conceptual model or theory.24–28,33,35,36 All studies were descriptive; no intervention studies were identified that met inclusion criteria. Most studies were cross-sectional (8/13),25,26,28,30–34 and data collection methods varied significantly across studies; all used questionnaires, either self-administered (5 clinic,29,30,32,35,36 10 mail24–29,32,34–36) or via interviews (4 in-person,25,28,31,34 1 telephone24), and the majority (8/12 who reported method24,25,28,29,32,34–36) used multiple data collection methods.

With respect to study participant characteristics, patients and caregivers enrolled in the existing research were diverse in nature. Sample sizes varied, ranging from 10 dyads36 to 139 dyads.27 Patient clinical characteristics also varied by cancer site, stage, time since diagnosis, and treatment type. For example, a few studies enrolled newly diagnosed patients, but the majority enrolled patients ranging on average from 6 months to 5 years after diagnosis. Most studies (10/12 reported) included caregivers who were partners or spouses rather than other family members or friends. Response rates for study enrollment and survey completion varied widely, highlighting recruitment and study management challenges. Most studies used bivariate data analysis (eg, descriptive statistics, Pearson correlations) and simple modeling techniques. Four studies used dyadic data analysis techniques using structural equation modeling or the actor-partner interdependence model.24,26,27,35

Quality of Life Constructs and Measures. The most common QoL constructs examined in the studies were from the psychological well-being domain including broadly defined QoL constructs in patients and caregivers or specific aspects of psychological well-being such as anxiety, distress, and cancer worry in both patients and caregivers, HNC-specific QoL in patients, and caregiver burden in caregivers. Physical aspects of QoL were more commonly studied in patients than in caregivers. Despite the focus on dyadic research questions, the social well-being domain was not extensively examined; those studies investigating interpersonal processes examined relationship quality, support, and communication factors (eg, disclosure, protective buffering) (for example, see References 26,27). Spiritual QoL was not examined in the studies.

Quality-of-life measures were used as the dependent variable in all studies, and multiple studies also included additional QoL measures as independent variables or a covariate.24–27,29,30,35 Patient and caregiver intrapersonal characteristics (eg, demographic and clinical factors) were studied frequently, typically as covariates. Dyad characteristics such as relationship length or dyad type were not commonly examined. Few studies directly assessed HNC management behaviors (eg, coping, care management) in dyads; social problem solving33 and goal reengagement28 were each examined in 1 study. In no studies were healthcare system, community, or policy variables examined directly.

The QoL instruments used for patients and caregivers varied widely, but most were validated. Twelve of the 13 studies used the same instrument to assess a QoL variable in both patients and caregivers, and 7 of 13 studies also used a cancer-specific QoL instrument in patients. Across the wide range of instruments used to assess QoL in these studies (Table), most instruments were used only 1 to 2 times in the studies with the exception of 2 instruments that were more commonly used. The most commonly used depression and anxiety scale for both patients and caregivers (6/13) was the Hospital Anxiety and Depression Scale,37 and the most commonly used relationship quality instrument (3/13) for both patients and caregivers was the Dyadic Adjustment Scale.38

Table

Table

Study Findings. In studies in which QoL constructs were compared in dyads (Figure 1; pathway A), a mix of findings resulted. For example, some studies found no differences between dyad members in psychological constructs (eg, depression31), whereas some found that patient and caregiver scores were associated,26,30 and others found significant differences in a QoL-related construct (eg, fear of recurrence24) between dyad members. The 1 study examining differences in the risk behaviors of smoking and alcohol drinking33 found that caregivers engaged in more risk behaviors compared with patients. Of note, in some of these comparison analyses, investigators compared scores within dyads, whereas most compared at the group level.

Studies examining other types of research questions each had unique aims such as examining relationships among demographic or clinical factors and QoL outcomes (Figure 1, pathway B). These studies contribute to a preliminary understanding about caregivers who may be at higher risk for poor psychological functioning (eg, when patient has worse symptoms,35 a feeding tube,30 or dysphagia29) but require additional research to better understand their implications. Some important contributions in the studies examining interpersonal processes or using dyadic data analysis approaches included testing theory,24,26,27 highlighting the potential role of cognitive and emotional factors in 1 partner on outcomes in the other, and comparing goals in dyads.28

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Discussion

Our review confirmed that despite the growing acknowledgement of the role played by cancer caregivers,11,39 little research has been conducted on dynamic QoL processes in HNC dyads. As summarized by a recent review,17 existing research indicates that HNC caregivers experience significant distress, and more research is needed to evaluate caregivers’ experiences to identify intervention targets. In this current review of the HNC dyadic literature, only 13 reports examining dyadic QoL research questions were identified since 1999, highlighting that this research is in its early stages. Also, less than half of these studies were conducted in the United States, so results need to be considered in the context of relevant cultural and healthcare system factors. Summarizing the existing literature was challenging because of the variability found in QoL research questions and study samples. However, the growth in this area of research is encouraging, and the majority of the studies presented adequately focused research questions and used appropriate study methods. In general, this initial set of studies has provided promising preliminary findings for follow-up in future research.

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Research Implications

Our examination of the dyadic HNC QoL literature identified several distinct research questions that have been studied in the research to date, but given the small number of studies and the variability in study samples and measures, we were limited in our ability to make conclusions by research question. The most commonly studied research question focused on comparing a QoL factor in patients and caregivers (pathway A; Figure 1) and highlighted that while HNC dyads face significant challenges, there is some evidence of resiliency with positive outcomes in some dyads. Other research questions (pathways B and C; Figure 1) were less commonly studied, and more research is needed to identify clinical and personal characteristics as well as interpersonal processes that impact QoL in dyads. For example, some studies highlighted potential demographic and clinical risk factors (eg, age, treatment type, use of feeding tube, dysphagia) and communication factors that will be important to examine further in future research.

The most common study design in the research identified to date was cross-sectional, highlighting the need for longitudinal research to better understand the potentially dynamic nature of dyads’ QoL over time.40 Caregivers most commonly studied in the current literature included spouses or partners. Patient inclusion and exclusion criteria varied widely by cancer type, stage, and time since diagnosis. While a narrow study population can facilitate our ability to make conclusions about a particular patient or caregiver group, this strategy can also limit our ability to understand who typically provides support to HNC patients and how caregiving might differ by relationship or clinical factors.41–43 This highlights a challenge in the study of HNC to balance the benefits of focusing on a heterogeneous patient population with data analysis challenges.44 More research is needed to understand the role of caregiving in diverse caregiver types.

Enrollment and completion rates were quite variable in this research, and the potential biases resulting from recruitment factors (eg, time of invitation, informed consent, inclusion/exclusion criteria) are important to consider in designing future studies. These challenges may be due to the inherent difficulties in working in HNC and dyads45,46 including the lower number of new cases diagnosed when compared with other cancers1 and the heterogeneity in clinical factors (treatment, comorbid conditions, alcohol and tobacco abuse47). Data collection methods varied widely in the studies, and numerous studies used multiple data collection strategies possibly to overcome study completion barriers.

While many of the studies used validated instruments that had been tested in HNC patients7,48 and caregivers17 and used similar instruments in patients and their caregivers, there was great variability in the types of QoL constructs measured and instruments used. The current literature was limited to mostly psychological QoL. A few factors associated with QoL were examined such as fear of recurrence and goal disturbance, but this research should expand to also consider broader aspects of physical, social, and spiritual QoL and caregiving in HNC. For example, a better definition of caregiving tasks unique to HNC (eg, assistance with communication and eating, support for addictive behaviors and disfigurement) may facilitate the identification of key future constructs to study. The use of quality measures (from validated instruments to those adapted from existing patient measures) is an important focus in this growing field. Also, given the unique nature of HNC and implications for caregiving (eg, coping with social losses such as communication, grappling with understanding human papillomavirus tests), it is important to develop or modify existing instruments and subscales to tap these experiences. This review also highlighted the importance of using clear language and operational definitions when comparing QoL in dyad members (eg, sometimes it was challenging to determine whether patient and caregiver QoL was compared between or within groups). The development of instruments to assess dyadic cancer management behaviors and long-term dyadic outcomes will also be of critical importance to intervention planning. Flexible and creative data collection methods by clinicians and researchers may be necessary to address patients’ communication challenges (eg, use of touch-screen surveys to address speech impairment).

With respect to data analysis, some studies compared patients and caregivers at the group level overlooking the opportunity to understand QoL functioning within dyads. Also, only a few studies used available sophisticated dyadic data analysis techniques, and future research should take advantage of methods that will help us better understand dynamic relationship processes.49 While some of the descriptive studies in this review tested theoretical frameworks, there is also room for more theory-informed research in areas such as teamwork, communication, and coping to address the dynamic nature of illness.12,23 In addition, advances have been made in the development of interventions for patients with HNC,46,50,51 and recruitment challenges have been examined,46 so future work should focus on expanding this research to address dyads.

As outlined in Figure 1, the work in dyadic coping13 has highlighted that in addition to intrapersonal characteristics of the HNC patient and the caregiver, characteristics of the dyad (eg, relationship type and length, living status, roles) may also be important to illness experiences and require more study. Similarly, in addition to individual QoL outcomes in both patients and caregivers, dyadic outcomes should also be considered (eg, relationship functioning, satisfaction with teamwork). This review highlights that more research is needed in the understudied areas of interpersonal processes (eg, communication, support, intimacy, management of roles, negotiation of risky behaviors) and dyadic illness management strategies (eg, coping behaviors, teamwork, care management) that may ultimately impact QoL outcomes in dyads. To move this field forward, more research is needed to specify key HNC dyadic processes that are missing from Figure 1 (see relationships denoted by dotted lines), for example, what types of HNC dyads are at highest risk for poor outcomes over time? What are the critical interpersonal processes and dyadic illness management behaviors that strain HNC dyads and are associated with poor QoL outcomes? Lastly, important work remains to be done to understand the critical areas of healthcare system, community, and policy factors that have not yet received attention in the dyadic HNC research.52

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Practice Implications

This review can be considered in light of potential care delivery and practice strategies to consider for the clinic setting targeting dyads. As we aim to develop tools and interventions to assess and address long-term HNC management challenges and outcomes, nurses are critical members of the healthcare team because of their expertise in assessment, care management, and intervention planning and implementation. A lack of reimbursement for caregiver supportive care services and the common time constraints faced by caregivers, which potentially limit their abilities to take care of themselves, not only remain challenges to dyad-centered care but also highlight the potential efficiency of offering interventions to both patients and their caregivers at the same time. Dyadic interventions aimed at supporting both patients and their caregivers are warranted.

The first step may be to enhance awareness about the impact of HNC on dyads and consider how to best assess and address dyadic needs. A focus on the dyad as the unit of care reflects the hypothesis that care that addresses the needs of the dyad as compared with only the patient may have greater effects on QoL and other outcomes. For example, distress screening and referrals could be routinely offered to both patients and their caregivers who are at high risk of distress. Interventions addressing potential distress triggers may be more effective when directed to dyads, encouraging the patient and caregiver to work together to address shared stressors related to HNC. With further study to define important relationship factors, we may find that it could be beneficial to also assess relationship functioning in the clinic and refer to services as needed. Because of the multidisciplinary care model used in HNC involving complex clinical services (eg, nursing, surgery, radiation, medical oncology, dental, speech, and swallowing therapy, tobacco cessation, nutrition)53 and often requiring caregiver involvement, it is critical to address both patient and caregiver needs in the clinic setting.

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Limitations

There are several limitations to acknowledge in this descriptive review. We did not include qualitative research, which can provide important guidance for the development of research questions.54 We focused on starting with an examination of those studies that explicitly examined QoL constructs in both patients and their caregivers to begin to summarize this literature. Future work will benefit from the use of both qualitative and quantitative methods to better explicate the nature of dyadic interactions in HNC. Also, 2 studies in this review were not unique as they shared the same parent study with another study; these studies did have unique research questions, but results should be interpreted with caution, given overlapping samples and methods. Also, it is important to note that we broadly conceptualized QoL in this review and therefore reported some QoL-related factors that are not traditionally considered in QoL models.19 This allowed us to meet our broad goal of exploring the focus of this growing field of research. Finally, despite the advances made in methods for evaluating the risk of bias for studies in systematic reviews,55 because of the nature of our descriptive research questions, the early stage of this field, and the heterogeneity of the study designs, research questions, study populations, and instruments used in the existing early body of research, we did not systematically assess and summarize the quality of the studies. More research is needed with diverse HNC patients and a variety of different caregiver types to facilitate summarizing the state of the research in this diverse study population.

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Summary

This review highlights the need for more research to better understand dyadic QoL processes in HNC. To facilitate advancing this science, it is critical to define the unique tasks and steps involved in caregiving in HNC. Also, we need to examine factors that may influence dyadic interactions (eg, communication, clinical factors, expectations, smoking/drinking, guilt) as well as health systems and health policy factors (eg, reimbursement for support services). This review also emphasized the need for rigorous but flexible research methods in this population. Advancing a dyadic HNC model may enhance progress in developing interventions to improve long-term outcomes in patients and caregivers.

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Keywords:

Caregiver; Dyad; Head and neck cancer; Quality of life; Systematic review

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