Accepted Manuscript Symptom Incongruence Trajectories in Lung Cancer Dyads Karen S. Lyons, PhD Christopher S. Lee, RN, PhD Jill A. Bennett, RN, PhD Lillian M. Nail, RN, PhD Erik Fromme, MD Shirin O. Hiatt, RN, MPH Aline G. Sayer, EdD PII:

S0885-3924(14)00186-9

DOI:

10.1016/j.jpainsymman.2014.02.004

Reference:

JPS 8639

To appear in:

Journal of Pain and Symptom Management

Received Date: 12 December 2013 Revised Date:

12 February 2014

Accepted Date: 20 March 2014

Please cite this article as: Lyons KS, Lee CS, Bennett JA, Nail LM, Fromme E, Hiatt SO, Sayer AG, Symptom Incongruence Trajectories in Lung Cancer Dyads, Journal of Pain and Symptom Management (2014), doi: 10.1016/j.jpainsymman.2014.02.004. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.

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Original Article

13-00714R1

Symptom Incongruence Trajectories in Lung Cancer Dyads

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Karen S. Lyons, PhD, Christopher S. Lee, RN, PhD, Jill A. Bennett, RN, PhD, Lillian M. Nail, RN, PhD, Erik Fromme, MD, Shirin O. Hiatt, RN, MPH, and Aline G. Sayer, EdD

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School of Nursing (K.S.L., C.S.L., J.A.B., L.M.N., S.O.H.) and Knight Cancer Institute (E.F.), Oregon Health & Science University, Portland, Oregon; and Psychology Department (A.G.S.),

Address correspondence to: Karen S. Lyons, PhD

Portland, OR 97239, USA

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E-mail: [email protected]

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3455 SW U.S. Veterans Road, SN-ORD

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University of Massachusetts at Amherst, Amherst, Massachusetts, USA

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Accepted for publication: March 20, 2014.

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Abstract Context: There is little known about the pattern of change in patient-family member

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symptom incongruence across the lung cancer trajectory. Objectives: This study examined trajectories of patient-family member incongruence in perceptions of patient physical function, pain severity, fatigue, and dyspnea in lung cancer dyads

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and explored the association with family member grief post-patient death.

Methods: Lung cancer patients and their family members providing care (N=109 dyads)

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rated patient symptoms and physical function five times over 12 months. Symptom incongruence trajectories were analyzed using multilevel modeling (MLM).

Results: Patient-family member incongruence did not significantly change over time, on average, except in the case of patient physical function where incongruence significantly

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declined. There was significant variability around trajectories of incongruence for all symptoms except fatigue. Exploratory analysis on a sub-sample of 22 bereaved family members found

post-patient death.

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incongruence regarding patient fatigue was associated with family member grief two months

Conclusion: Findings suggest the importance of modeling symptom incongruence over

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time and taking a dyadic approach to the illness context to identify interventions that promote adjustment and quality of life for both patient and family member. Key Words: Symptom incongruence, multilevel modeling, lung cancer, complicated grief, families. Running head: Symptom Incongruence Trajectories

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Introduction Lung cancer is the leading cause of cancer deaths in the U.S. and is a disease with a rapid

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progression and high symptom burden [1]. Early detection of lung cancer is rare, with 85% of people diagnosed in advanced stages of disease; 60% of lung cancer patients die within one year of diagnosis [1]. The rapid downward trajectory combined with the refractory response of lung

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cancer to treatment necessitates patients and family members recognizing patient’s symptoms in order to provide good care, adjust to the context of a life-threatening illness, and make decisions

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within a short window of time. Pain, fatigue and dyspnea are among the most distressing and problematic symptoms in lung cancer [2-7], and are more likely to be experienced at the time of diagnosis than in other common cancers. Both symptoms of lung cancer and the side effects of treatment interfere with physical function, which declines over the course of the disease [8, 9]. As health care providers often rely on family members for information, even when patients are

clinical challenges [12].

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alert [10, 11], incongruent symptom perceptions between patient and family member can create

Over the last decade there has been movement towards a dyadic perspective of the illness

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experience [13, 14]. With this movement has come the emergence of dyadic frameworks [15, 16]

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and appropriate methodologies [17, 18]. The developmental-contextual model of dyads coping with illness proposes that dyads work together as a unit to appraise, cope, and adjust to the illness experience over time [15]. Patients and family members who share similar appraisals of the illness context (e.g., patient symptoms) are more likely to experience better dyadic adjustment [15, 19-22]. The current study is one of the first known studies to use multilevel modeling to examine trajectories of symptom incongruence in lung cancer dyads.

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Across illness populations incongruence is lower for more observable and concrete phenomena such as physical function [23-26] and higher for more subjective concepts such as fatigue [2, 27]. In general, family members tend to appraise patient physical impairment and

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symptom severity higher than patients [28-32]. The small number of studies that have explicitly focused on lung cancer have shown similar patterns [2, 24, 33-36]. However, most prior research on incongruence has been limited in several ways. First, studies have often used traditional

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methods to examine incongruence (e.g., percent agreement, difference scores, Pearson

correlation), which are limited in what they can tell us about incongruence [18]. For instance, the

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Pearson correlation coefficient is only sensitive to how much one variable is a linear transformation of another variable [37], and aggregate data result in separate conclusions about patients and family members at the group level without capturing the within-dyad variation or relationships [38]. Notable exceptions are studies that employed multilevel modeling (MLM), a

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method that simultaneously creates a true dyad average and true dyad incongruence score, corrected for measurement error [25, 39-41]. Second, incongruence studies are predominantly cross-sectional. Thus, there is a dearth of information about whether incongruence in symptom

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perceptions changes across the illness trajectory. The few studies that include more than one time point show a decline in incongruence over time [31], but are often analyzed as a series of

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separate cross-sectional or pretest-posttest designs greatly limiting the ability to study change [42]. Understanding patterns of patient-family member incongruence over time would increase our ability to support families through the process. Finally, little is known about the consequences of symptom incongruence. Few studies follow family members long enough to capture the bereavement process and its associations with the preceding illness experience [43, 44]. A small number of studies with bereaved lung cancer

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family members have found poor bereavement outcomes to be associated with feelings of stress and denial at diagnosis [45] but family members were examined anywhere from 6 weeks to 25 months after the death of the patient [46, 47]. Families with high incongruence regarding

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patient’s symptoms (indicating poorer recognition of the patient’s status), may be less prepared for the bereavement process and experience greater distress post bereavement. However, no prospective cancer study has directly examined the association between patient-family member

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incongruence and bereavement well-being.

Applying the developmental-contextual model, this study will be the first known study to

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examine trajectories of patient-family member incongruence in perceptions of patient fatigue, pain severity, dyspnea, and physical function in lung cancer dyads using MLM. In line with previous incongruence research, we hypothesize that 1) family members will rate severity of symptoms and physical function significantly higher than patients and 2) incongruence will

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significantly decline over time for physical function and dyspnea (more observable phenomena), but not pain severity or fatigue (more subjective phenomena). Additionally, the current study explored the association between baseline incongruence and family member grief post-patient

Methods

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death.

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Participants and Procedure

A population-based sample of lung cancer patients and their family members were recruited through the Oregon State Cancer Registry (OSCaR) using rapid case ascertainment. A total of 186 patients expressed interest in the study and of those 114 (61%) patient-family member dyads were eligible and consented to be in the study. Patients were required to have a primary invasive diagnosis of non-small cell lung cancer within the past 6 months and a family

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member involved in their care willing and eligible to participate in the study. Both patient and family member were required to be at least 18 years of age, be able to speak English, have access to a telephone, and live within 50 miles of the metro area of Portland, Oregon.

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Interested patients (with a confirmed diagnosis) were identified by OSCaR and

subsequently screened by phone. Patients were asked to identify a family member involved in the patient’s care. For patient-family member dyads that met all eligibility criteria, informed

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consent was obtained during the baseline in-person interview. Data were obtained from

structured interviews conducted separately with the patient and family member at baseline, 3, 6,

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9, and 12 months. Follow-up interviews were conducted by telephone. Participants were compensated ($10) for completion of each interview. For all patients who died during the study, respective family members were offered a bereavement interview two months after the patient’s death. A total of 26 (72%) family members agreed to participate. The study was approved by the

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institutional review board at Oregon Health & Science University. Measures

Physical Function. Physical function was measured using the Physical Function Scale (10

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items) of the Medical Outcomes Study Short-Form 36, v.2 (SF-36) [48]. Internal consistency reliability of the scale has been shown as .74-.93 [49, 50]. The SF-36 is well-established as a

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valid, reliable instrument that is sensitive to change over time [51-55]. In the current study, patients and family members were asked to rate the patient’s physical function over the last week. Scores were transformed to 0-100, with higher scores indicating better physical function. Both patient and family member scales in this study demonstrated strong internal consistency (patient: α=.90; family member: α=.89). Pain Severity. Pain severity was measured using the 4-item subscale from the Brief Pain

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Inventory (BPI) [56]. Pain severity rates the patient’s pain over the last week on a 0 (no pain) to 10 (pain as bad as you can imagine) scale for pain at its worst, least, on average, and right now. Summary scores are created by averaging the four items, with higher scores indicating greater

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severity. High Cronbach’s alpha values have been exhibited for the subscale [57-59]. Both patient and family member scales demonstrated strong internal consistency in this study: pain severity (patient report: α=.90; family member report: α=.90).

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Fatigue. Fatigue was measured using the 13-item fatigue scale of the Functional

Assessment in Chronic Illness Therapy (FACIT) measure [60]. The measure, developed for use

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in cancer patients, assesses self-reported tiredness, weakness, and difficulty conducting usual activities due to fatigue. Each item is rated on a 0 (not all) to 4 (very much) scale based on fatigue over the past week. All but two items are reverse coded and then all items summed to create a scale score, with higher scores indicating less fatigue. The scale has demonstrated good

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construct validity [60]. Both patient and family member scales demonstrated strong internal consistency: fatigue (patient report: α=.94; family member report: α=.92). Dyspnea. Dyspnea was measured using an adapted version of the UCSD Shortness of

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Breath Questionnaire (SOBQ) [61]. The SOBQ consists of self-report items regarding dyspnea associated with activities on a 0 (not at all) to 5 (unable to do due to breathlessness) scale. The

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SOBQ has demonstrated good internal consistency (.91-.96), test-retest reliability (.94), construct validity and sensitivity to change in non-lung cancer populations [61, 62]. Lung cancer studies have traditionally used 1-item self-report measures. In the current study, the SOBQ measure had a correlation of .83 with a similar global dyspnea item demonstrating validity of the measure in a lung cancer population. In the current study, patients and family members were asked to rate the patient’s dyspnea over the last week. Both patient and family member scales demonstrated strong

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internal consistency in this study: dyspnea (patient report: α=.91; family member report: α=.92). Complicated Grief. The Inventory of Complicated Grief (ICG) was used to measure grief in family members [63]. Family members responded to 19 statements (e.g., I feel I cannot accept

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the death of my family member) on a 0 (never) to 4 (always) scale. Higher scores indicate greater levels of grief with a score of 25 or more indicating complicated grief. The scale has

demonstrated strong internal consistency (α=.88-94), test-retest reliability (r = .80), and both

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concurrent and criterion-related validity [63, 64]. The scale demonstrated strong internal

consistency (α=.93) in the current study, with 45% of the sample experiencing complicated grief.

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Statistical Analyses

HLM 7 [65] was used to analyze data at the level of the dyad in order to control for dependencies in the pair of outcome scores associated with each dyad (e.g., one for the patient and one for the family member). To analyze symptom incongruence over time, a combination of

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the cross-sectional univariate dyadic model, which has been described in detail elsewhere [18, 25] and the longitudinal individual model was used [65]. The process involves two stages for each of the four outcome variables (physical function, pain severity, fatigue, & dyspnea). First, a

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model was developed to obtain estimates of dyadic incongruence (empirical Bayes) for each wave of data collection simultaneously to control for dependencies over time, specified as:

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Ytp = β1p (Time 1 Dyad Mean) + β2p (Time 1 Incongruence) +β3p (Time 2 Dyad Mean) + β4p (Time 2 Incongruence) + β5p (Time 3 Dyad Mean) + β6p (Time 3 Incongruence) + β7p (Time 4 Dyad Mean) + β8p (Time 4 Incongruence) + β9p (Time 5 Dyad Mean) + β10p (Time 5 Incongruence) + rtp Ytp represents the symptom or function score (i.e., physical function, pain severity fatigue, & dyspnea) where t = 1,…k responses per dyad and time of measurement for dyad p.

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β1p, β3p, β5p, β7p, and β9p represent the dyad mean (symptom score averaged across the dyad members) at each time point. This was achieved by coding patients -.5 and family members +.5. β2p, β4p, β6p, β8p, and β10p represent the incongruence or gap between the two members of the

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dyad at each time point.

Second, the resulting HLM level 2 residual file contains the estimates (empirical Bayes) of both the dyad mean and incongruence for each dyad at all five waves. As the aims of the study

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used as the dependent variable in the second stage of models.

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were to examine incongruence over time, only estimates for incongruence at each wave were

Ytp = β0p + β1p (Linear) + β2p (Quadratic) + rtp Ytp represents the incongruence score at each time of measurement. The intercept, β0p, represents the incongruence value when time is equal to zero, which in this case was baseline. The slope parameter β1p represents the linear component of change in incongruence over time, or

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instantaneous rate of change, and the slope parameter β2p represents the curvature of change in incongruence over time, or acceleration of change. Linear and quadratic models were compared

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for each outcome variable and a deviance statistic was used to determine the best-fitting model. An unconditional model for each symptom and physical function was fit to get an estimate of the

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average trajectory of incongruence and to determine whether there was significant variability around the average trajectories. Finally, baseline incongruence scores for each symptom and physical function were exported from the HLM Level 2 residual file to SPSS (v.21) and correlated with family member grief scores to explore the association between incongruence and bereavement well-being. Results Demographic and Clinical Characteristics

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Of the 114 dyads at baseline, 109 had complete data on baseline variables and were included in the current analyses. Average age of patients and their family members was 68.6 (SD=11.7) and 60.5 (SD=14.1) years respectively. The majority of patients were male (53%),

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white (93%), and living with the family member (76%). Family members were predominantly spouses (70%) and female (74%). Approximately a third of patients were in advanced stage of lung cancer with average time since diagnosis 3.7 (SD = 2.0) months at baseline (Table 1).

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The study had 36% attrition over the 12 months (85% due to patient death). Comparing dyads that completed the study to those that did not, a series of t-tests and Chi-square tests were

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performed on baseline variables. As expected, the final sample was significantly less likely to be in advanced stage of disease at baseline χ2 (4, N =109) 17.5, p < .01, but also had significantly less fatigue at baseline t(107) = -2.01, p < .05. However, the two groups did not significantly differ (p > .05) on patient age, t(107) = -1.06, pain severity, t(106) = 1.71, dyspnea, t(106) =

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0.88, physical function, t(107) = -1.16, depressive symptoms, t(107) = 1.37, gender χ2 (1, N =109) 0.80, or family member depressive symptoms, t(107) = 1.15, feelings of strain, t(107) = 1.19 or relationship to the patient χ2 (1, N =109) 0.05.

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Patient-Family Member Incongruence: Average Pattern of Change Over Time Results for the unconditional models showed that a quadratic model fit the data

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significantly better than a linear model for physical function, pain severity, and dyspnea; a linear model was a significantly better fit for fatigue. Table 2 shows significant incongruence at baseline (intercepts) for all symptom and function variables. Specifically, family members rated the patient’s physical function, pain severity, fatigue, and dyspnea significantly worse than the patient at baseline, as hypothesized. For physical function, incongruence significantly decreased over time. There was no significant change, however, in incongruence over time for pain

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severity, fatigue or dyspnea. Thus, our second hypothesis was only partially supported. There was significant variation around average trajectories for all outcomes except fatigue. Figures 1a-

incongruence trajectories for physical function, pain, and dyspnea. Association of Incongruence With Complicated Grief

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c depict average trajectories with six prototypical dyads illustrating actual ranges of variability in

Pearson correlations, among the 22 family members with available data, found baseline

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incongruence regarding patient fatigue was significantly correlated with family member grief (r = .50, p < .05) two months post patient death. Incongruence regarding patient pain severity and

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dyspnea were not significantly associated with family member grief (p > .10), while incongruence regarding patient physical function showed a trend towards significance (r = .36, p < .10). Discussion

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This was the first known study to examine trajectories of lung cancer patient-family member symptom incongruence using MLM. Results indicated several important findings. First, family members rated patient symptoms and physical function significantly worse than patients

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at baseline. Second, patient-family member incongruence did not significantly change over time, on average, except in the case of patient physical function where incongruence significantly

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declined. Third, there was significant variability around trajectories of incongruence for physical function, pain severity, and dyspnea, suggesting a sample of dyads with varying patterns of change in incongruence. No such variability was found for patient fatigue. Finally, incongruence regarding patient fatigue was significantly associated with family member grief two months postpatient death.

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Consistent with cross-sectional studies of symptom incongruence, family members, on average, rate patient symptoms and physical function worse at baseline than patients [23, 30]. However, only physical function showed a significant decrease in incongruence over time;

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incongruence regarding patient pain severity, fatigue, and dyspnea did not significantly change over the 12 months. One potential explanation may be that physical function is more readily observable than symptoms such as pain severity and fatigue and has traditionally demonstrated

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low levels of patient-family member incongruence across disease contexts [25, 30]. Family members may find it easier to rate a patient’s physical function as it changes over time and the

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disease progresses, while patients may find it more difficult to conceal such decline. In light of this, it is noteworthy that dyspnea did not also show a significant decline in incongruence. Dyspnea is a hallmark of lung cancer and something also believed to be more readily observable. One potential explanation may be due to the direct impact physical function often has on care

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provided. Incongruence regarding patient dyspnea, like pain severity, did show significant variability across dyads, with some dyads experiencing less incongruence over time, and others experiencing more over 12 months. Research indicates that family members are more affected by

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aggregate change across time, in less observable patient symptoms, than frequent changes [66]. But, it is unknown how much this is related to patients’ concealment and protective buffering or

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family’s members’ strain or lack of recognition. Clearly, much more work is needed to understand these phenomena. Finally, incongruence regarding patient fatigue at baseline remained unchanged over time with no significant variability around the average trajectory; perhaps indicating fatigue may be particularly challenging for family members to gauge. A secondary purpose of the study was to explore the association between incongruence and family member grief in a small sub-sample. As suspected, there appears to be some

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indication that incongruence may place family members at greater risk post-bereavement. Given the small sample size and inconsistency across symptoms, further research on larger samples is clearly needed. Nevertheless, the prospective, longitudinal nature of the association highlights a

inclusion of such consequences in much of the incongruence literature.

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potentially important line for future incongruence research, particularly amid the lack of

The current study has several important strengths and implications for practice and future

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research. First, this is one of the first known studies to examine symptom incongruence over time using MLM. This innovative methodology allowed us to move beyond average incongruence to

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examine the variability that exists across dyads. Results indicate change over time varies by symptom. Without such studies and methodology it is difficult to know how to support families as they navigate rapid trajectories in contexts such as lung cancer. Second, as symptom incongruence may be a proxy for symptom recognition, it is important to understand when there

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are incongruent perceptions that may lead to negative outcomes for both patient and family member, and for clinicians to be mindful of these consequences. Third, findings imply that incongruence can decrease when symptoms are more

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observable and have a more direct impact on care provided. Using this to educate family members in ways to notice cues for symptoms that are harder to see and prompt them to go

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beyond physical function and question the role of pain, fatigue, and dyspnea on physical function may lead to better patient outcomes and preparation in family members. Similarly, interventions that promote open communication within the dyad about the patient’s symptoms and course of the disease, something that is difficult for many cancer dyads [12], is a needed line of research. Finally, knowing the trajectories of symptom incongruence can assist health care providers when soliciting family member appraisals, knowing when it might be beneficial to

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solicit perceptions from both members, or broach a conversation to gauge the incongruence within the dyad. Adopting a dyadic perspective to the illness experience can help optimize the

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needs of patient and family member and facilitate difficult decisions that need to be made. The study had several limitations. First, it is unclear whether findings are specific to lung cancer dyads. Further research is needed to replicate these findings in other disease and end-of-

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life contexts, such as heart failure, that rely heavily on symptom management. Second, the study could only explore the association between incongruence and family member grief within a very

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small sub-sample. These results cannot be considered robust and are in need of replication in larger samples. More importantly, other potential implications of incongruence within the dyad (e.g., patient outcomes, dyadic well-being, decision-making) should be examined. Third, the study included both spouse and non-spouse family members providing care to the patient. Sensitivity analyses on the 78 spousal dyads showed no differences in trajectories of

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incongruence. However, given the large portion of spousal dyads in the sample (70%), further research is needed to tease apart differences that may exist by care involvement and type of

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family member. Fourth, as with much of the research in this area, patient poor health was cited as a reason for refusal to participate. Our use of a population-based sample and rapid case

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ascertainment allowed us to reach patients within a few months of diagnosis, greatly increasing our ability to recruit a robust proportion of advanced stage patients, but it is unknown how results of the current study generalize to patients with significantly poor health soon after diagnosis.

Little is known about the experience of lung cancer families, and even less about how they recognize, communicate, and manage the patient’s symptoms over time. The current study highlights the importance of examining incongruence by symptom and over time using dyadic

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methodologies. Targeting communication within the dyad, in particular around symptoms and physical function, may lead to better outcomes for both patient and family member.

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Disclosures and Acknowledgments This study was generously supported by the American Cancer Society (RSGPB-07-17101-CPPB). The authors declare no conflicts of interest. AU: IS THIS LAST SENTENCE

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ACCURATE?

The authors are sincerely grateful to the families who participated and the support of staff

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Figure Legends Figure 1a-c. Average patient-family member incongruence trajectories for patient physical function, pain severity, and dyspnea respectively. Dark lines represent average trajectories with

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six prototypical dyads depicted in lighter shade to illustrate actual ranges in variability in

incongruence for each symptom. Dashed line highlights where incongruence equals zero (patient

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and family member agree). PT: patient; FM: family member.

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Table 1 Patient and Family Member Characteristics Patients

Family Members

Age (years), mean (+ SD)

68.6 (+11.7)

60.5 (+14.1)

Female, n (%)

51 (47)

Employed, n (%)

19 (17)

Attended some college, n (%)

54 (50)

White, n (%)

101 (93)

Annual household income < $40,000

38 (35)

Months since diagnosis, mean (+ SD) Married/partnered to patient, n (%)

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Children in the home, n (%)

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Live together, n (%)

74

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Stage IV lung cancer, n (%)

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Characteristic

91 31 (28)

37 (34)

-

3.7 (+2.0)

-

-

76 (70)

21 (19)

24 (22)

83 (76)

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Table 2

Physical Function

Pain Severity

Fatigue

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Parameter Estimates and Standard Errors for Linear and Quadratic Growth-Curve Models of Incongruence Over 12 Months

SE

B

SE

B

Intercept

-9.01***

0.91

0.34***

0.09

-0.33***

Slope

-0.37

0.71

0.05

Curvature

0.39*

0.15

-0.02

Variance

χ2

Variance

Intercept

78.87***

Slope

39.65***

Curvature

1.52***

*p < .05; **p < .01; ***p < .001.

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Random effects

SE

B

SE

0.06

1.19*

0.47

0.09

-0.01

0.01

0.33

0.37

0.02

N/A

N/A

-0.03

0.09

χ2

Variance

χ2

Variance Component

χ2

Component

Component

868.88 0.66***

371.66

0.32***

736.37

17.97***

411.27

371.41 0.41***

226.48

0.00

96.85

5.62***

176.35

261.06 0.02***

201.61

N/A

N/A

0.27***

165.16

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Fixed Effects

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B

Shortness of Breath

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