Neuro-Oncology Advance Access published June 23, 2015
Neuro-Oncology
Neuro-Oncology 2015; 0, 1 – 7, doi:10.1093/neuonc/nov101
Hope and mood changes throughout the primary brain tumor illness trajectory Alvina A. Acquaye, Lin Lin, Elizabeth Vera-Bolanos, Mark R. Gilbert, and Terri S. Armstrong
Corresponding Author: Alvina A. Acquaye, MS, 1400 Pressler, Unit 1414, Houston, TX 77030 ([email protected]); Lin Lin, RN, PhD, University of California, San Francisco, Department of Family Health Care Nursing, 2 Koret Way, N405K, Campus Mail Box 0606, San Francisco, CA 94143-0606 ([email protected]).
Background. The ambiguity of defining hope impacts the level of readiness faced by health care professionals treating patients with glioma, a disease with unpredictable outcomes. This study describes the report of hope and the relationship between hope and mood in adult brain tumor patients at various points in the illness trajectory. Methods. This was a cross-sectional study with data collection including use of the Herth Hope Index (HHI), the Profile of Mood States-Short Form (POMS-SF), and clinical information. Descriptive statistics were used to report sample characteristics. Spearman’s rho and Mann-Whitney tests were used to compare and differentiate scores. Results. Eighty-two patients ranging in age from 22 to 78 years (median, 44.5 y) participated in the study. Patients were primarily male (57.3%), married (76.8%), and had a high-grade glioma (35.4%). Nearly half had recurrence, and more than 20% were on active treatment. The overall HHI total score for the sample was 41.32 (range: 13–48). Patients with recurrence had a lower HHI interconnectedness (median ¼ 14.00) score and higher total mood disturbance (median ¼ 14.00) compared with patients without recurrence (median ¼ 15.00 and median ¼ 0.00, respectively; P , .05). All negative mood states on the POMS-SF were negatively correlated with HHI subscales. Conclusions. Overall, patients reporting more hope also reported less overall mood disturbance As expected, patients with tumor recurrence reported lower hope and higher mood disturbance than those who were newly diagnosed or without recurrence. Targeting interventions specifically tailored to an individual’s needs for improvement in quality of life throughout the disease course may include measures to address hope in order to facilitate positive coping strategies. Keywords: brain tumors, glioma, hope, mood changes, quality of life.
Patients diagnosed with a life-threatening illness generally feel they have limited options for improving quality of life during this unexpected period in their lives. Learning to cope with such a debilitating disease can be difficult. Being hopeful is often considered an important factor in personal adjustments but is plagued by illness-related uncertainty.1 Hope should be a focal point in the initial stages of any illness,2 especially since it can play an essential role for cancer patients and their overall sense of well-being3 – 5 during the treatment course. In patients with solid tumors other than primary brain tumors, Herth6 found that high levels of hope led to an improved coping response and subsequently to preservation of hope in this patient
population throughout the illness trajectory. Despite implications that hope is an important factor during the trajectory of an illness, the ambiguity of this construct and the limited instruments to assess hope make it difficult to personalize interventions in order to focus on hope-related changes. Hope can be defined as “a multidimensional dynamic life force characterized by a confident yet uncertain expectation of achieving good, which, to the hoping person is realistically possible and personally significant” (page 380).7 Finding an instrument that targets a specific area of hope in a concise manner would allow for measurement of a patient’s hope at various stages of the illness trajectory, which can lead to development by health
Received 8 January 2015; accepted 18 May 2015 # The Author(s) 2015. Published by Oxford University Press on behalf of the Society for Neuro-Oncology. All rights reserved. For permissions, please e-mail: [email protected].
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Department of Family Health, University of Texas Health Science Center School of Nursing, Houston, Texas (A.A.A.); Department of Family Health, The University of California, San Francisco, California (L.L.); Department of Neuro-Oncology, The University of Texas MD Anderson Cancer Center, Houston, Texas (E.V.-B., T.S.A.); Department of Neuro-Oncology, National Institutes of Health, Bethesda, Maryland (M.R.G.); Department of Family Health, University of Texas Health Science Center School of Nursing, Houston, Texas (T.S.A.)
Acquaye et al.: Hope and mood during the illness trajectory
care professionals of appropriate interventions specifically tailored to that individual.8 Review of available literature reveals no studies exploring hope in patients with glioma or exploring the relationship of hope to mood state or other outcomes. This study describes the report of hope by patients with primary brain tumors and evaluates the relationship of hope to specific disease and clinical characteristics.
Methods
Instrument Description The POMS-SF is a 37-item assessment of mood with 6 subscales (5 negative: depression, anger, tension, confusion, and fatigue and one positive: vigor) measured on a 0 – 4 scale with 0 being “not at all” and 4 being “extremely.” Participants were asked to circle the number that best represented their current feelings from the list of adjectives. The minimal clinical difference has not been established for this assessment tool, but it has been modified for use in cancer patients; the Cronbach a for the subscales and instrument ranged from 0.78 to 0.91.13 The HHI (Supplementary Appendix S1) is a truncated version of the Herth Hope Scale (HHS) focusing on different levels of hope. The HHI questionnaire consists of 12 items within 3 subscales that have been condensed from the 6 established dimensions of hope (affective, cognition, behavioral, affiliative, temporal, and contextual): (i) temporality and future: one’s perception that a positive outcome is possible14; (ii) positive readiness/expectancy: feeling confident in one’s plan that his or her actions will result in a desired outcome; and (iii) interconnectedness: recognizing the connection between self, others, and faith. Herth14 reported that an individual can possess multiple types of hope that can exist at a single point in time.
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Analysis Plan Analyses were performed using IBM SPSS Version 19. Descriptive statistics characterized the participant sample and provided the means, medians, and ranges of all scores. Relationships between hope and mood were calculated with Spearman’s rho correlations and chi-square tests. The Mann-Whitney independent samples test was used to determine differences in hope and mood according to treatment status and recurrence status.
Results Sample Description Eighty-two patients participated in this study, with one patient declining participation when approached by the research assistant. The study had 6 screening failures, with one due to neurologic deficits and 5 unable to complete questionnaires when approached due to time constraints. The participants ranged in age from 22 to 78 years (median: 44.5 y). Participants were primarily white (81.7%), male (57.3%), and married (76.8%) with a diagnosis of malignant glioma (glioblastoma, 35.4%), and more than half had not had tumor recurrence (54.9%). A majority of the sample had a KPS of 90% or above (82.9%) and had undergone a gross total tumor resection at the time of diagnosis (46.3%). Since a majority of participants had a high KPS score, the HHI and POMS-SF were completed independently without assistance. Tables 1 and 2 presents the demographic and clinical characteristics for the sample.
Hope Scores Description Mean scores and range of scores for the HHI and its subscales are provided in Table 3. Overall, the total score for the study sample was 41.3 with a range of 13 –48, which was very similar to the range of scores described by Herth (12 –48) in her study describing hope in other solid tumor cancer patients, with high scores being associated with higher levels of hope.8 The findings did demonstrate similar scores between readiness and interconnectedness subscales (m ¼ 14), with both being slightly higher than temporality (m ¼ 13.4; range: 4 –16) for the entire
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This study is a secondary analysis of a study designed to evaluate uncertainty, mood state, and hope in patients with primary brain tumors at various stages of the illness trajectory. Findings related to uncertainty,9,10 mood,11 and the impact of access to the electronic medical record12 have been reported elsewhere. Patient eligibility included being 18 years of age or older with a primary brain tumor (PBT) diagnosis without cognitive deficits (as determined by the treating physician) that would preclude the ability to complete the patient-reported outcome measures or provide informed consent. Patients were not approached to participate if the research team observed neurologic and cognitive deficits during the screening process. Patients who were approached to participate and then observed to be unable to self-report due to neurologic deficits were considered screening failures. This report includes patients with PBT being seen for outpatient services at The University of Texas MD Anderson Cancer Center. After IRB approval was obtained, patients were approached during their clinical visit and completed the HHI, the Profile of Mood StatesShort Form (POMS-SF), and demographic information at one point in time. Patients completed questionnaires prior to being told the results of any diagnostic studies related to the treatment of their brain tumor. The clinical assessment tool was used to collect pertinent clinical information from the patient’s’medical record.
Participants were asked to place an “X” in the box that applied to how much they agreed with each item using a Likert scale (range: 1 – 4, with 1 defined as strongly disagree, 2 defined as disagree, 3 defined as agree, 4 defined as strongly agree) format. This instrument has been used in other solid tumor patients with a Cronbach a of 0.97 and with both reported reliability (test-retest r ¼ 0.91, P , .05) and validity (concurrent validity r ¼ 0.84, P , .05; divergent validity, r ¼ 20.73, P , .05) scores,8,15 with absence of an established minimal critical difference score reported for either instrument. The demographic form collected information on age, marital status, ethnic background, household income, gender, employment status, level of education, and address. The clinical assessment tool was used to collect information on patient group (on treatment, follow-up), recurrence status, PBT diagnosis and tumor grade, tumor location, MRI results (response, stable, progression), current medications, and KPS.
Acquaye et al.: Hope and mood during the illness trajectory
Table 1. Demographic Characteristics Demographic Characteristics
N (%)
47 (57.3%) 35 (42.7%) 63 (76.8%) 19 (23.2%) 42 (52.5%) 38 (47.5%) 67 (81.7%) 3 (3.7%) 6 (7.3%) 6 (7.3%) 10 (12.2%) 72 (87.8%) 27 (34.6%) 31 (39.7%) 11 (14.1%) 9 (11.5%)
sample. Demographic and clinical characteristics were also analyzed to assess for any relationships with hope. The total hope score was associated with demographic and clinical factors, with lower reported levels of hope being associated with not being married, having a prior history of depression, and a poor KPS. Poor KPS was also associated with lower scores on all hope subscales, indicating the importance of functional status on self-report of hope.
Clinical Characteristics Patient Group On treatment Follow-up Recurrence No Yes (first time) Yes (repeated) Diagnosis Astrocytoma Oligodendroglioma Oligoastrocytoma Glioblastoma Other Grade Grade II Grade III Grade IV Missing/Not done Surgery Type Biopsy Partial resection Gross total resection Missing Results of MRI Stable Progression Post-op KPS , 80 . 90 History of Depression No Yes
N (%)
17 (20.8%) 65 (79.3%) 45 (54.9%) 22 (26.8%) 15 (18.3%) 21 (25.6%) 24 (29.3%) 2 (2.4%) 29 (35.4%) 6 (7.3%) 18 (21.9%) 33 (40.2%) 30 (36.6%) 1 (1.2%) 20 (24.4%) 23 (28.0%) 38 (46.3%) 1 (1.2%) 74 (90.2%) 7 (8.5%) 1 (1.2%) 14 (17.1%) 68 (82.9%) 61 (74.4) 21 (25.6%)
Comparison Between Groups Although patients on active treatment reported higher hope in the interconnectedness subscale and follow-up patients had higher levels in the readiness subscale, these differences were not significant. However, there was a significant difference in the total hope score and the hope-interconnectedness subscale based on recurrence status. Participants with recurrence reported lower hope-overall (median ¼ 40) and hopeinterconnectedness (median ¼ 14) than those without recurrence (median ¼ 43, U ¼ 620, P , .05 and median ¼ 15, U ¼ 582.5, P , .02 respectively). See Table 4 for hope scores based on demographic characteristics and clinical factors.
Mood Description Overall Score and by Treatment Status Total mood disturbance for the entire sample had a mean score of 9.8, (range: 224 to 100). The results indicate that the participants reported more fatigue (mean ¼ 5.5) and tension (mean ¼ 4.8) than any of the other subscales overall. Participants on active treatment reported their level of mood
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disturbance at (m ¼ 13.7, range: 217 to 100), with fatigue (m ¼ 6.5, range: 0 –20) presented as their most intense negative mood state, while anger (m ¼ 3.5, range: 0 – 28) was reported as their least occurring. The follow-up group followed suit, reporting anger (m ¼ 2.9, range: 0 – 21) as their least intense negative mood state and fatigue (m ¼ 5.2, range: 0 – 19) as the highest, while having a high vigor (m ¼ 11.2, range: 0–24).
Comparison Between Groups The mood subscales scores between participants on treatment and those in follow-up showed no significant differences. At both stages of treatment, mood states were similar in intensity. There was a significant difference in the reported levels of fatigue, depression, confusion, and overall mood disturbance based on recurrence status. Participants who experienced a recurrence reported higher levels of fatigue (median ¼ 18 vs median ¼ 3), depression (median ¼ 3 vs median ¼ 0), confusion (median ¼ 5 vs median ¼ 2), and overall mood disturbance (median ¼ 14 vs median ¼ 0) than participants who had not had a recurrence
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Gender Male Female Marital Status Married Not married Employment Status Employed Not employed Ethnic Background White Black Other Race Hispanic Level of education 12th grade or less Higher than 12th grade Household Income $100,000 or more $50,000 to $99,999 $30,000 to $49,999 Less than $30,000
Table 2. Clinical Characteristics
Acquaye et al.: Hope and mood during the illness trajectory
Table 3. Herth Hope Index subscale scores
On treatment Follow-up Recurrence Entire group
Hope-Temporality
Hope- Readiness
Hope- Interconnectedness
Hope Total Score
13.41 13.40 13.11 13.40
13.94 13.97 13.65 13.96
14.00 13.94 13.49 13.95
41.35 (33 –48) 41.31 (13 –48) 40.24 (26 –48) 41.32 (13 –48)
(11– 16) (4–16) (9–16) (4–16)
(12– 16) (5–16) (7–16) (5–16)
(10– 16) (4–16) (9–16) (4–16)
Table 4. Demographic and clinical correlations Hope-Temporality Mean
Hope-Readiness Mean
Hope-Interconnectedness Mean
41.6 41.1
13.3 13.5
14.2 13.8
14.1 13.8
42.2 38.4
13.7 12.4
14.3 12.9
14.2 13.1
41.6 41.2
13.8 13.0
14.0 14.0
13.8 14.2
41.9 36.6
13.6 11.9
14.1 12.3
14.1 12.5
41.6 39.6
13.5 13.0
14.1 12.9
14.0 13.7
39.5 42.0
12.6 13.7
13.3 14.2
13.6 14.1
42.0 37.8
13.7 11.9
14.1 13.1
14.2 12.8
41.6 42.8 39.3
13.7 13.9 12.5
14.0 14.6 13.3
13.9 14.3 13.5
41.4 42.0 40.2
13.4 13.5 13.2
13.9 14.2 13.6
14.0 14.2 13.4
The bold typeface indicates “significantly different.” *P value , .05.
(U ¼ 600.5, P , .03; U ¼ 584, P , .02; U625, P ¼ .05; and U ¼ 576.5, P , .02, respectively).
Relationship of Hope and Mood A relationship is present between a patient’s hope and his/her mood (r ¼ 20.57, P , .01). The more a participant experienced hope, the less total mood disturbance was reported. Individual
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subscales of both constructs were also related. Hopetemporality correlated with all of the negative mood states (r ranged from 20.41 to 20.55, P , .01) and positively correlated with vigor (r ¼ 0.36, P ¼ .01). Hope-readiness had similar results as hope-temporality. Hope-interconnectedness was negatively correlated with the negative mood states (r ranged from 20.26 to 20.48, P , .02) but was not related with vigor at all (Table 5).
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Demographic characteristics Sex Female Male Marital status* Married Not married Employment status Employed Not employed Race* White Non-white Education* .12th grade ≤12th grade History of depression* Yes No Clinical factors KPS* ≥90% ≤80% Tumor grade II III IV Treatment group Active treatment Stable, no recurrence Stable, previous recurrence
Hope-Total Mean
Acquaye et al.: Hope and mood during the illness trajectory
Table 5. Correlation for the relationship between hope and mood (Spearman’s rho)
POMS-Tension POMS-Anger POMS-Fatigue POMS-Depression POMS-Confusion POMS-Vigor POMS-Total mood disturbance
Hope-Total
Hope-Temporality
Hope-Readiness
Hope-Interconnectedness
20.488** 20.407** 20.373** 20.564** 20.484** 0.277* 20.573**
20.490** 20.439** 20.410** 2.550** 20.548** 0.364** 20.618**
20.402** 20.281* 20.275* 20.459** 20.331** 0.238* 20.455**
20.358** 20.335** 20.258* 20.478** 20.344** 0.079 20.394**
Discussion Hope is an acquired response that over time becomes consciously available when dealing with unforeseen circumstances.16 Hope is the belief that regardless of one’s present predicament, it is possible to overcome it.16 The motivating factor that one can apply to any situation is visualizing a positive outcome to establish goals rather than one with an impeded thought process, this has been described as an important focus to inspire hope in cancer patients.16,17 Overall, the participants in this study who reported more hope also reported less overall mood disturbance. This supports the importance of establishing and maintaining a healthy coping response even when faced with adversity. Studies in other solid tumor patients have demonstrated that hope is a common strategy when dealing with a serious illness such as cancer, although there are individual differences in coping styles.18 – 20 Hope reduces the overall effects of the illness through improvements in the patient’s ability to handle loss, loneliness, and suffering.21,22 Previous studies in other patients with solid tumors have reported that those with recurrence had a lower level of hope.23 As expected, this group of participants in our study reported lower hope and higher mood disturbance than those who were without recurrence. Interestingly, the participants with primary brain tumors in this study reported a higher HHI score than that reported23 by those with a recurrence from other solid tumors. Also, with the similar hope scores between our treatments groups, our follow-up group had a wider range (range: 13 – 48) of scores than the participants on active treatment, indicating greater variability in the levels of hope reported in this group. Several studies have found that hope does not change drastically with regard to tumor type and stage of illness diagnosis. Felder reported24 that, although there were no significant differences in hope between metastatic, recurrent, and refractory disease groups, hope was relatively high regardless of tumor status. Stoner25 found in her research that changes in hope differed between patients who received life expectancy information versus those who did not, even though hope levels were not significantly different between terminally ill cancer patients and patients at different stages of the treatment process. This finding further solidifies the importance of the relationship between patients and their physicians in discussing end-of-life concerns throughout the illness trajectory to target possible ways of coping with the disease and maintaining a positive level of hope.
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The relationship between patients and their health care providers plays a pivotal role in hope and treatment-related outcomes. Neuro-oncologists are often faced with the dilemma of deciding how much information to convey to patients without either reducing their hope or creating a sense of false hope because the disease course is unpredictable, although typically associated with both morbidity and mortality. However, studies of these circumstances have demonstrated that health care providers can open up an active line of communication, beginning with initial diagnosis, about the unpredictability of the disease course while both maintaining hope and preparing patients for end-of- life discussions as they arise.26 Toh27 found that patients with other solid tumors experience several high and low points during their disease course that affect their level of hope. He reported that patients experience several emotional setbacks from initially wanting to use all possible treatments to remove the tumor, to some acceptance that there are no other options and just alleviating symptoms will suffice, and then to acknowledging their disease status and their uncertainty about their life coming to an end. Several studies mention that it is not the oncologist’s responsibility to provide hope, but steps can be taken to re-evaluate one’s values during visits to maintain a sense of hope and acceptance of disease to improve the remaining quality of life.3,26 Poncar17 discussed how health care providers can inspire hope through their interpersonal relationships with patients. Recognizing that cancer is a life-threatening disease, which is associated with an uncertain future, allows the accommodation of hope for the individual. By facilitating hope as a positive coping response, feelings of helplessness, hopelessness, powerlessness, and depression may be mediated. Interventions to inspire hope may include incorporation of skills such as presence, touch, active listening, reality surveillance, values clarification, and goal setting. Through the use of this intervention, health care providers can assess the personal needs of the patient in order to provide support, trust, and help to increase the patient’s self-esteem. Giving the patient a sense of direction, which can be lost battling this illness, may serve as the catalyst to giving patients the opportunity to set goals since a lack of motivation and hopelessness can occur. A focal point in having this type of interventionwould be the health care provider having a clear understanding of the hope process and providing encouragement while utilizing the skills and techniques noted above.17 Daneault et al28 reported that there are 2 forms of hope, particularly hope that focuses on a specific goal and can be
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Abbreviation: POMS, Profile of Mood States. *P , .5; **P , .01.
Acquaye et al.: Hope and mood during the illness trajectory
Conclusion There are limited reports of positive coping in patients with glioma, despite the recognized importance of hope in coping with serious illness. Hope includes 2 polar dimensions of either being hopeful or hopeless without the 2 intertwining; learning to balance individual denials with being realistic in a crisis situation clarifies the need for using hope as coping response.31 Hope in its entirety helps to make situations more endurable and purposeful in times of chaos.31 Overall, PBT patients reported similar hope scores as other cancer patients using the HHI and significantly lower hope at the time of tumor recurrence. Targeting interventions specifically tailored to individual needs in improvement of quality of life throughout the disease course may include measures to address hope to facilitate positive coping strategies.5 The relationship between a patient’s hope score and mood is important and suggests that interventions targeting hope may have an impact on negative mood states and facilitate positive coping strategies for this patient population. Future studies should explore hope longitudinally and begin to explore the impact of measures to increase hope on mood and other outcome measures. Additionally, future studies should further explore the psychometric properties of the instruments and their utility by exploring sensitivity to change over time and establishing minimally important differences using the scales in the brain tumor patient population.
Supplementary Material Supplementary material is available at Neuro-Oncology Journal online (http://neuro-oncology.oxfordjournals.org/).
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Funding This study was supported by the Collaborative Ependymoma Research Network (CERN) and the Dean’s Research Award from University of Texas-Houston.
Conflict of interest statement. There are no financial disclosures from any author.
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Neuro-Oncology 2015; 0, 1 – 7, doi:10.1093/neuonc/nov101
Hope and mood changes throughout the primary brain tumor illness trajectory Alvina A. Acquaye, Lin Lin, Elizabeth Vera-Bolanos, Mark R. Gilbert, and Terri S. Armstrong
Corresponding Author: Alvina A. Acquaye, MS, 1400 Pressler, Unit 1414, Houston, TX 77030 ([email protected]); Lin Lin, RN, PhD, University of California, San Francisco, Department of Family Health Care Nursing, 2 Koret Way, N405K, Campus Mail Box 0606, San Francisco, CA 94143-0606 ([email protected]).
Background. The ambiguity of defining hope impacts the level of readiness faced by health care professionals treating patients with glioma, a disease with unpredictable outcomes. This study describes the report of hope and the relationship between hope and mood in adult brain tumor patients at various points in the illness trajectory. Methods. This was a cross-sectional study with data collection including use of the Herth Hope Index (HHI), the Profile of Mood States-Short Form (POMS-SF), and clinical information. Descriptive statistics were used to report sample characteristics. Spearman’s rho and Mann-Whitney tests were used to compare and differentiate scores. Results. Eighty-two patients ranging in age from 22 to 78 years (median, 44.5 y) participated in the study. Patients were primarily male (57.3%), married (76.8%), and had a high-grade glioma (35.4%). Nearly half had recurrence, and more than 20% were on active treatment. The overall HHI total score for the sample was 41.32 (range: 13–48). Patients with recurrence had a lower HHI interconnectedness (median ¼ 14.00) score and higher total mood disturbance (median ¼ 14.00) compared with patients without recurrence (median ¼ 15.00 and median ¼ 0.00, respectively; P , .05). All negative mood states on the POMS-SF were negatively correlated with HHI subscales. Conclusions. Overall, patients reporting more hope also reported less overall mood disturbance As expected, patients with tumor recurrence reported lower hope and higher mood disturbance than those who were newly diagnosed or without recurrence. Targeting interventions specifically tailored to an individual’s needs for improvement in quality of life throughout the disease course may include measures to address hope in order to facilitate positive coping strategies. Keywords: brain tumors, glioma, hope, mood changes, quality of life.
Patients diagnosed with a life-threatening illness generally feel they have limited options for improving quality of life during this unexpected period in their lives. Learning to cope with such a debilitating disease can be difficult. Being hopeful is often considered an important factor in personal adjustments but is plagued by illness-related uncertainty.1 Hope should be a focal point in the initial stages of any illness,2 especially since it can play an essential role for cancer patients and their overall sense of well-being3 – 5 during the treatment course. In patients with solid tumors other than primary brain tumors, Herth6 found that high levels of hope led to an improved coping response and subsequently to preservation of hope in this patient
population throughout the illness trajectory. Despite implications that hope is an important factor during the trajectory of an illness, the ambiguity of this construct and the limited instruments to assess hope make it difficult to personalize interventions in order to focus on hope-related changes. Hope can be defined as “a multidimensional dynamic life force characterized by a confident yet uncertain expectation of achieving good, which, to the hoping person is realistically possible and personally significant” (page 380).7 Finding an instrument that targets a specific area of hope in a concise manner would allow for measurement of a patient’s hope at various stages of the illness trajectory, which can lead to development by health
Received 8 January 2015; accepted 18 May 2015 # The Author(s) 2015. Published by Oxford University Press on behalf of the Society for Neuro-Oncology. All rights reserved. For permissions, please e-mail: [email protected].
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Department of Family Health, University of Texas Health Science Center School of Nursing, Houston, Texas (A.A.A.); Department of Family Health, The University of California, San Francisco, California (L.L.); Department of Neuro-Oncology, The University of Texas MD Anderson Cancer Center, Houston, Texas (E.V.-B., T.S.A.); Department of Neuro-Oncology, National Institutes of Health, Bethesda, Maryland (M.R.G.); Department of Family Health, University of Texas Health Science Center School of Nursing, Houston, Texas (T.S.A.)
Acquaye et al.: Hope and mood during the illness trajectory
care professionals of appropriate interventions specifically tailored to that individual.8 Review of available literature reveals no studies exploring hope in patients with glioma or exploring the relationship of hope to mood state or other outcomes. This study describes the report of hope by patients with primary brain tumors and evaluates the relationship of hope to specific disease and clinical characteristics.
Methods
Instrument Description The POMS-SF is a 37-item assessment of mood with 6 subscales (5 negative: depression, anger, tension, confusion, and fatigue and one positive: vigor) measured on a 0 – 4 scale with 0 being “not at all” and 4 being “extremely.” Participants were asked to circle the number that best represented their current feelings from the list of adjectives. The minimal clinical difference has not been established for this assessment tool, but it has been modified for use in cancer patients; the Cronbach a for the subscales and instrument ranged from 0.78 to 0.91.13 The HHI (Supplementary Appendix S1) is a truncated version of the Herth Hope Scale (HHS) focusing on different levels of hope. The HHI questionnaire consists of 12 items within 3 subscales that have been condensed from the 6 established dimensions of hope (affective, cognition, behavioral, affiliative, temporal, and contextual): (i) temporality and future: one’s perception that a positive outcome is possible14; (ii) positive readiness/expectancy: feeling confident in one’s plan that his or her actions will result in a desired outcome; and (iii) interconnectedness: recognizing the connection between self, others, and faith. Herth14 reported that an individual can possess multiple types of hope that can exist at a single point in time.
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Analysis Plan Analyses were performed using IBM SPSS Version 19. Descriptive statistics characterized the participant sample and provided the means, medians, and ranges of all scores. Relationships between hope and mood were calculated with Spearman’s rho correlations and chi-square tests. The Mann-Whitney independent samples test was used to determine differences in hope and mood according to treatment status and recurrence status.
Results Sample Description Eighty-two patients participated in this study, with one patient declining participation when approached by the research assistant. The study had 6 screening failures, with one due to neurologic deficits and 5 unable to complete questionnaires when approached due to time constraints. The participants ranged in age from 22 to 78 years (median: 44.5 y). Participants were primarily white (81.7%), male (57.3%), and married (76.8%) with a diagnosis of malignant glioma (glioblastoma, 35.4%), and more than half had not had tumor recurrence (54.9%). A majority of the sample had a KPS of 90% or above (82.9%) and had undergone a gross total tumor resection at the time of diagnosis (46.3%). Since a majority of participants had a high KPS score, the HHI and POMS-SF were completed independently without assistance. Tables 1 and 2 presents the demographic and clinical characteristics for the sample.
Hope Scores Description Mean scores and range of scores for the HHI and its subscales are provided in Table 3. Overall, the total score for the study sample was 41.3 with a range of 13 –48, which was very similar to the range of scores described by Herth (12 –48) in her study describing hope in other solid tumor cancer patients, with high scores being associated with higher levels of hope.8 The findings did demonstrate similar scores between readiness and interconnectedness subscales (m ¼ 14), with both being slightly higher than temporality (m ¼ 13.4; range: 4 –16) for the entire
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This study is a secondary analysis of a study designed to evaluate uncertainty, mood state, and hope in patients with primary brain tumors at various stages of the illness trajectory. Findings related to uncertainty,9,10 mood,11 and the impact of access to the electronic medical record12 have been reported elsewhere. Patient eligibility included being 18 years of age or older with a primary brain tumor (PBT) diagnosis without cognitive deficits (as determined by the treating physician) that would preclude the ability to complete the patient-reported outcome measures or provide informed consent. Patients were not approached to participate if the research team observed neurologic and cognitive deficits during the screening process. Patients who were approached to participate and then observed to be unable to self-report due to neurologic deficits were considered screening failures. This report includes patients with PBT being seen for outpatient services at The University of Texas MD Anderson Cancer Center. After IRB approval was obtained, patients were approached during their clinical visit and completed the HHI, the Profile of Mood StatesShort Form (POMS-SF), and demographic information at one point in time. Patients completed questionnaires prior to being told the results of any diagnostic studies related to the treatment of their brain tumor. The clinical assessment tool was used to collect pertinent clinical information from the patient’s’medical record.
Participants were asked to place an “X” in the box that applied to how much they agreed with each item using a Likert scale (range: 1 – 4, with 1 defined as strongly disagree, 2 defined as disagree, 3 defined as agree, 4 defined as strongly agree) format. This instrument has been used in other solid tumor patients with a Cronbach a of 0.97 and with both reported reliability (test-retest r ¼ 0.91, P , .05) and validity (concurrent validity r ¼ 0.84, P , .05; divergent validity, r ¼ 20.73, P , .05) scores,8,15 with absence of an established minimal critical difference score reported for either instrument. The demographic form collected information on age, marital status, ethnic background, household income, gender, employment status, level of education, and address. The clinical assessment tool was used to collect information on patient group (on treatment, follow-up), recurrence status, PBT diagnosis and tumor grade, tumor location, MRI results (response, stable, progression), current medications, and KPS.
Acquaye et al.: Hope and mood during the illness trajectory
Table 1. Demographic Characteristics Demographic Characteristics
N (%)
47 (57.3%) 35 (42.7%) 63 (76.8%) 19 (23.2%) 42 (52.5%) 38 (47.5%) 67 (81.7%) 3 (3.7%) 6 (7.3%) 6 (7.3%) 10 (12.2%) 72 (87.8%) 27 (34.6%) 31 (39.7%) 11 (14.1%) 9 (11.5%)
sample. Demographic and clinical characteristics were also analyzed to assess for any relationships with hope. The total hope score was associated with demographic and clinical factors, with lower reported levels of hope being associated with not being married, having a prior history of depression, and a poor KPS. Poor KPS was also associated with lower scores on all hope subscales, indicating the importance of functional status on self-report of hope.
Clinical Characteristics Patient Group On treatment Follow-up Recurrence No Yes (first time) Yes (repeated) Diagnosis Astrocytoma Oligodendroglioma Oligoastrocytoma Glioblastoma Other Grade Grade II Grade III Grade IV Missing/Not done Surgery Type Biopsy Partial resection Gross total resection Missing Results of MRI Stable Progression Post-op KPS , 80 . 90 History of Depression No Yes
N (%)
17 (20.8%) 65 (79.3%) 45 (54.9%) 22 (26.8%) 15 (18.3%) 21 (25.6%) 24 (29.3%) 2 (2.4%) 29 (35.4%) 6 (7.3%) 18 (21.9%) 33 (40.2%) 30 (36.6%) 1 (1.2%) 20 (24.4%) 23 (28.0%) 38 (46.3%) 1 (1.2%) 74 (90.2%) 7 (8.5%) 1 (1.2%) 14 (17.1%) 68 (82.9%) 61 (74.4) 21 (25.6%)
Comparison Between Groups Although patients on active treatment reported higher hope in the interconnectedness subscale and follow-up patients had higher levels in the readiness subscale, these differences were not significant. However, there was a significant difference in the total hope score and the hope-interconnectedness subscale based on recurrence status. Participants with recurrence reported lower hope-overall (median ¼ 40) and hopeinterconnectedness (median ¼ 14) than those without recurrence (median ¼ 43, U ¼ 620, P , .05 and median ¼ 15, U ¼ 582.5, P , .02 respectively). See Table 4 for hope scores based on demographic characteristics and clinical factors.
Mood Description Overall Score and by Treatment Status Total mood disturbance for the entire sample had a mean score of 9.8, (range: 224 to 100). The results indicate that the participants reported more fatigue (mean ¼ 5.5) and tension (mean ¼ 4.8) than any of the other subscales overall. Participants on active treatment reported their level of mood
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disturbance at (m ¼ 13.7, range: 217 to 100), with fatigue (m ¼ 6.5, range: 0 –20) presented as their most intense negative mood state, while anger (m ¼ 3.5, range: 0 – 28) was reported as their least occurring. The follow-up group followed suit, reporting anger (m ¼ 2.9, range: 0 – 21) as their least intense negative mood state and fatigue (m ¼ 5.2, range: 0 – 19) as the highest, while having a high vigor (m ¼ 11.2, range: 0–24).
Comparison Between Groups The mood subscales scores between participants on treatment and those in follow-up showed no significant differences. At both stages of treatment, mood states were similar in intensity. There was a significant difference in the reported levels of fatigue, depression, confusion, and overall mood disturbance based on recurrence status. Participants who experienced a recurrence reported higher levels of fatigue (median ¼ 18 vs median ¼ 3), depression (median ¼ 3 vs median ¼ 0), confusion (median ¼ 5 vs median ¼ 2), and overall mood disturbance (median ¼ 14 vs median ¼ 0) than participants who had not had a recurrence
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Gender Male Female Marital Status Married Not married Employment Status Employed Not employed Ethnic Background White Black Other Race Hispanic Level of education 12th grade or less Higher than 12th grade Household Income $100,000 or more $50,000 to $99,999 $30,000 to $49,999 Less than $30,000
Table 2. Clinical Characteristics
Acquaye et al.: Hope and mood during the illness trajectory
Table 3. Herth Hope Index subscale scores
On treatment Follow-up Recurrence Entire group
Hope-Temporality
Hope- Readiness
Hope- Interconnectedness
Hope Total Score
13.41 13.40 13.11 13.40
13.94 13.97 13.65 13.96
14.00 13.94 13.49 13.95
41.35 (33 –48) 41.31 (13 –48) 40.24 (26 –48) 41.32 (13 –48)
(11– 16) (4–16) (9–16) (4–16)
(12– 16) (5–16) (7–16) (5–16)
(10– 16) (4–16) (9–16) (4–16)
Table 4. Demographic and clinical correlations Hope-Temporality Mean
Hope-Readiness Mean
Hope-Interconnectedness Mean
41.6 41.1
13.3 13.5
14.2 13.8
14.1 13.8
42.2 38.4
13.7 12.4
14.3 12.9
14.2 13.1
41.6 41.2
13.8 13.0
14.0 14.0
13.8 14.2
41.9 36.6
13.6 11.9
14.1 12.3
14.1 12.5
41.6 39.6
13.5 13.0
14.1 12.9
14.0 13.7
39.5 42.0
12.6 13.7
13.3 14.2
13.6 14.1
42.0 37.8
13.7 11.9
14.1 13.1
14.2 12.8
41.6 42.8 39.3
13.7 13.9 12.5
14.0 14.6 13.3
13.9 14.3 13.5
41.4 42.0 40.2
13.4 13.5 13.2
13.9 14.2 13.6
14.0 14.2 13.4
The bold typeface indicates “significantly different.” *P value , .05.
(U ¼ 600.5, P , .03; U ¼ 584, P , .02; U625, P ¼ .05; and U ¼ 576.5, P , .02, respectively).
Relationship of Hope and Mood A relationship is present between a patient’s hope and his/her mood (r ¼ 20.57, P , .01). The more a participant experienced hope, the less total mood disturbance was reported. Individual
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subscales of both constructs were also related. Hopetemporality correlated with all of the negative mood states (r ranged from 20.41 to 20.55, P , .01) and positively correlated with vigor (r ¼ 0.36, P ¼ .01). Hope-readiness had similar results as hope-temporality. Hope-interconnectedness was negatively correlated with the negative mood states (r ranged from 20.26 to 20.48, P , .02) but was not related with vigor at all (Table 5).
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Demographic characteristics Sex Female Male Marital status* Married Not married Employment status Employed Not employed Race* White Non-white Education* .12th grade ≤12th grade History of depression* Yes No Clinical factors KPS* ≥90% ≤80% Tumor grade II III IV Treatment group Active treatment Stable, no recurrence Stable, previous recurrence
Hope-Total Mean
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Table 5. Correlation for the relationship between hope and mood (Spearman’s rho)
POMS-Tension POMS-Anger POMS-Fatigue POMS-Depression POMS-Confusion POMS-Vigor POMS-Total mood disturbance
Hope-Total
Hope-Temporality
Hope-Readiness
Hope-Interconnectedness
20.488** 20.407** 20.373** 20.564** 20.484** 0.277* 20.573**
20.490** 20.439** 20.410** 2.550** 20.548** 0.364** 20.618**
20.402** 20.281* 20.275* 20.459** 20.331** 0.238* 20.455**
20.358** 20.335** 20.258* 20.478** 20.344** 0.079 20.394**
Discussion Hope is an acquired response that over time becomes consciously available when dealing with unforeseen circumstances.16 Hope is the belief that regardless of one’s present predicament, it is possible to overcome it.16 The motivating factor that one can apply to any situation is visualizing a positive outcome to establish goals rather than one with an impeded thought process, this has been described as an important focus to inspire hope in cancer patients.16,17 Overall, the participants in this study who reported more hope also reported less overall mood disturbance. This supports the importance of establishing and maintaining a healthy coping response even when faced with adversity. Studies in other solid tumor patients have demonstrated that hope is a common strategy when dealing with a serious illness such as cancer, although there are individual differences in coping styles.18 – 20 Hope reduces the overall effects of the illness through improvements in the patient’s ability to handle loss, loneliness, and suffering.21,22 Previous studies in other patients with solid tumors have reported that those with recurrence had a lower level of hope.23 As expected, this group of participants in our study reported lower hope and higher mood disturbance than those who were without recurrence. Interestingly, the participants with primary brain tumors in this study reported a higher HHI score than that reported23 by those with a recurrence from other solid tumors. Also, with the similar hope scores between our treatments groups, our follow-up group had a wider range (range: 13 – 48) of scores than the participants on active treatment, indicating greater variability in the levels of hope reported in this group. Several studies have found that hope does not change drastically with regard to tumor type and stage of illness diagnosis. Felder reported24 that, although there were no significant differences in hope between metastatic, recurrent, and refractory disease groups, hope was relatively high regardless of tumor status. Stoner25 found in her research that changes in hope differed between patients who received life expectancy information versus those who did not, even though hope levels were not significantly different between terminally ill cancer patients and patients at different stages of the treatment process. This finding further solidifies the importance of the relationship between patients and their physicians in discussing end-of-life concerns throughout the illness trajectory to target possible ways of coping with the disease and maintaining a positive level of hope.
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The relationship between patients and their health care providers plays a pivotal role in hope and treatment-related outcomes. Neuro-oncologists are often faced with the dilemma of deciding how much information to convey to patients without either reducing their hope or creating a sense of false hope because the disease course is unpredictable, although typically associated with both morbidity and mortality. However, studies of these circumstances have demonstrated that health care providers can open up an active line of communication, beginning with initial diagnosis, about the unpredictability of the disease course while both maintaining hope and preparing patients for end-of- life discussions as they arise.26 Toh27 found that patients with other solid tumors experience several high and low points during their disease course that affect their level of hope. He reported that patients experience several emotional setbacks from initially wanting to use all possible treatments to remove the tumor, to some acceptance that there are no other options and just alleviating symptoms will suffice, and then to acknowledging their disease status and their uncertainty about their life coming to an end. Several studies mention that it is not the oncologist’s responsibility to provide hope, but steps can be taken to re-evaluate one’s values during visits to maintain a sense of hope and acceptance of disease to improve the remaining quality of life.3,26 Poncar17 discussed how health care providers can inspire hope through their interpersonal relationships with patients. Recognizing that cancer is a life-threatening disease, which is associated with an uncertain future, allows the accommodation of hope for the individual. By facilitating hope as a positive coping response, feelings of helplessness, hopelessness, powerlessness, and depression may be mediated. Interventions to inspire hope may include incorporation of skills such as presence, touch, active listening, reality surveillance, values clarification, and goal setting. Through the use of this intervention, health care providers can assess the personal needs of the patient in order to provide support, trust, and help to increase the patient’s self-esteem. Giving the patient a sense of direction, which can be lost battling this illness, may serve as the catalyst to giving patients the opportunity to set goals since a lack of motivation and hopelessness can occur. A focal point in having this type of interventionwould be the health care provider having a clear understanding of the hope process and providing encouragement while utilizing the skills and techniques noted above.17 Daneault et al28 reported that there are 2 forms of hope, particularly hope that focuses on a specific goal and can be
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Abbreviation: POMS, Profile of Mood States. *P , .5; **P , .01.
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Conclusion There are limited reports of positive coping in patients with glioma, despite the recognized importance of hope in coping with serious illness. Hope includes 2 polar dimensions of either being hopeful or hopeless without the 2 intertwining; learning to balance individual denials with being realistic in a crisis situation clarifies the need for using hope as coping response.31 Hope in its entirety helps to make situations more endurable and purposeful in times of chaos.31 Overall, PBT patients reported similar hope scores as other cancer patients using the HHI and significantly lower hope at the time of tumor recurrence. Targeting interventions specifically tailored to individual needs in improvement of quality of life throughout the disease course may include measures to address hope to facilitate positive coping strategies.5 The relationship between a patient’s hope score and mood is important and suggests that interventions targeting hope may have an impact on negative mood states and facilitate positive coping strategies for this patient population. Future studies should explore hope longitudinally and begin to explore the impact of measures to increase hope on mood and other outcome measures. Additionally, future studies should further explore the psychometric properties of the instruments and their utility by exploring sensitivity to change over time and establishing minimally important differences using the scales in the brain tumor patient population.
Supplementary Material Supplementary material is available at Neuro-Oncology Journal online (http://neuro-oncology.oxfordjournals.org/).
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Funding This study was supported by the Collaborative Ependymoma Research Network (CERN) and the Dean’s Research Award from University of Texas-Houston.
Conflict of interest statement. There are no financial disclosures from any author.
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“prioritized to reflect the importance given to values in one’s life” and generalized hope, which “protects a person’s integrity and helps preserve life’s meaning even when threatened by terminal illness” (page 2310). Hope is an essential life resource for coping with all aspects of the illness trajectory.29 Previous reports have found a positive relationship between high hope scores and the use of effective coping styles, regardless of disease status, in other solid tumor patients.24 Even when faced with adversity, patients are still able to incorporate a healthy psychosocial response to deal with their present situation. Rustoen et al30 reported hope, when high, to be a significant factor that can affect one’s view on their health state, future possibilities, and overall view of self. Gaining a positive mindset with regard to hope acquired from life experiences tests an individual’s ability, which further prepares them to use this underlying coping response to manage unpredictable situations. There were several limitations to our study, including the cross-sectional sample and lack of patients evaluated prior to starting initial treatment post surgery. In addition, only those patients capable of self-report were included in the study sample. As a consequence, these findings may not be pertinent to patients with more extensive neurocognitive deficits. Assessing an individual’s hope longitudinally may reveal that some patients maintain hope despite changes in disease and treatment status. Several studies mention the importance of collecting hope scores at different time points during the illness trajectory in order to incorporate interventions that help maintain a sense of hope or improve it during this time.15,23
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