Psychosocial considerations Assessment of psychological ... - Nature

Bone Marrow Transplantation (2002) 29, 917–925  2002 Nature Publishing Group All rights reserved 0268–3369/02 $25.00 www.nature.com/bmt

Psychosocial considerations Assessment of psychological distress in prospective bone marrow transplant patients PC Trask1, A Paterson1, M Riba3, B Brines4, K Griffith2, P Parker4, J Weick4, P Steele4, K Kyro4 and J Ferrara4 1

Behavioral Medicine Program, University of Michigan Medical School and Comprehensive Cancer Center, Ann Arbor, MI, USA; Biostatistics Program, University of Michigan Medical School and Comprehensive Cancer Center, Ann Arbor, MI, USA; 3 Department of Psychiatry, University of Michigan Medical School and Comprehensive Cancer Center, Ann Arbor, MI, USA; and 4 Division of Hematology/Oncology, Departments of Internal Medicine and Pediatrics University of Michigan Medical School and Comprehensive Cancer Center, Ann Arbor, MI, USA 2

Summary: Patient psychological distress is associated with many aspects of the bone marrow transplantation (BMT) process and has been linked with poor treatment outcomes. We assessed psychological distress in potential BMT candidates, and compared patient and nurse coordinator ratings of emotional distress at the time of initial BMT consultation. Fifty patients self-reported psychological distress using both the NCCN Distress Thermometer (DT) and the Hospital Anxiety and Depression Scale (HADS). Coordinators rated patient emotional distress using the DT and Coordinator Rating Scales that measure anxiety and depression. Fifty and 51% of patients self-reported clinically significant levels of emotional distress and anxiety, respectively, but only 20% self-reported clinically significant levels of depression. There was good correlation between ratings using the brief DT and the more comprehensive HADS. There was significant but only moderate agreement between patient and coordinator ratings of emotional distress and anxiety, with coordinators underestimating the number of patients with high levels of emotional distress. In addition, coordinator ratings of patient emotional distress primarily reflected anxiety, whereas anxiety and depression together only minimally accounted for patient self-reports of psychological distress. These findings suggest that: (1) the DT can be a useful screening device; (2) approximately half of patients at the time of initial consultation for BMT already experience significant levels of psychological distress; and (3) coordinators observe emotional distress primarily as anxiety, but patients experience psychological distress as something more than anxiety and depression. Bone Marrow Transplantation (2002) 29, 917–925. DOI: 10.1038/sj/bmt/1703557

Correspondence: PC Trask, Behavioral Medicine Program, University of Michigan, 475 Market Place, Suite L, Ann Arbor, MI 48108–0757, USA Received 9 August 2001; accepted 12 February 2002

Keywords: distress; anxiety; patient ratings; coordinator ratings; bone marrow transplant

With developments in medical treatments for cancer providing better remission and survival rates, increased attention is being focused on the quality of life and psychological adjustment of cancer patients. Research examining psychological distress has reported that clinically significant levels of emotional distress are observed in roughly one-third of mixed oncology samples,1–3 with estimates being higher for some specific samples (eg BMT). Such distress has been associated with compromised quality of life, worse adherence to chemotherapy regimens, and decreased rates of disease-free survival.4–7 As a result, evaluation of emotional distress has become an important part of the medical management of individuals with cancer.8 In fact, recent guidelines developed by the National Comprehensive Cancer Network (NCCN) addressing this issue recommend that all cancer patients be screened for psychological distress as part of comprehensive patient care.9 Unfortunately, while screening instruments meant to identify patient psychological distress are often selfreporting and easy to administer, they are generally not a standard part of current clinical medical practice. Frequently, an informal assessment of emotional distress by health care providers (eg nurses, physicians) prompts a referral to a psychologist or psychiatrist for formal assessment. Informal assessments by non-psychiatric medical staff, however, may not be an effective method of screening for emotional distress. There are data to indicate that many non-psychiatric healthcare providers have difficulty identifying emotional distress in their patients, in part due to the fact that less than one-quarter of emotionally distressed cancer patients are likely to report their symptoms to nonpsychiatric medical staff.10–13 In addition, the concordance between patient and staff evaluations of psychological distress has not always been encouraging. When associations between patient and staff ratings have been examined, correlations ranging from 0.21 to 0.50 have been reported.14,15

Assessment of psychological distress PC Trask et al

918

Agreement between patient and staff ratings of anxiety and depression using Cohen’s kappa statistic has been reported as between 0.07 and 0.23.16 Although interpretations of these associations may vary (see Lampic17 for a review), it is clear that the agreement between patient and provider ratings of psychological distress is less than perfect. Some studies have noted that staff tend to overestimate anxiety and emotional distress in their patients,16–20 whereas others have found that this is not the case.21,22 As an example, a recent study by Sollner et al.23 examined the ability of oncologists to identify emotional distress in their patients and found better detection of moderate than high levels, resulting in overall poor agreement between oncologist and patient ratings on the Hospital Anxiety and Depression Scale (HADS). This discrepancy implies that staff may identify some aspects of emotional distress more easily than others.24,25 NCCN guidelines define psychological distress as a range of feelings and emotions that people experience in reaction to cancer and its treatment. They further state that such distress can range from common feelings of sadness and fear to severe reactions that can be diagnosed as psychiatric illnesses.9 This spectrum represents the gamut of human emotion, and may help explain why non-psychiatric staff have difficulty identifying distress in all its manifestations. In order to facilitate assessment of distress, the NCCN has also suggested that psychological distress may be thought of in terms of anxiety and depression, as these constructs are easily measured with standardized instruments that may be incorporated without much difficulty into standard medical practice.26–28 However, the contribution of anxiety and depression to psychological distress as conceptualized by the NCCN is as yet unknown. Assessment of psychological distress may be particularly useful at critical points in the care of cancer patients (eg at the beginning, middle, and end of a chemotherapy regimen).29,30 One area in which assessments of emotional distress have been conducted at such definable critical points is bone marrow transplant (BMT). BMT is used to treat a variety of cancers (eg Hodgkin’s disease, leukemia, breast cancer, multiple myeloma), and is often the last course of treatment for patients who have experienced a treatment failure or a relapse of cancer. BMT recipients undergo an intensive procedure that may require isolation and a lengthy convalescent period (4 weeks in hospital) which is often associated with significant physical and psychosocial morbidity.31–36 The demonstrated psychological morbidity associated with the BMT process, the importance of screening for emotional distress in cancer patients, the difficulty for providers in identifying psychological distress in patients, and the lack of assessment of emotional distress before the BMT consent process, suggested that additional research in this area was needed. As such, the primary goals of this project were three-fold. First, we wished to determine the amount of psychological distress perceived by potential candidates at the time of their initial BMT assessment and consultation. Based on the literature, we hypothesized that approximately 30% of patients would report anxiety, depression or psychological distress above a clinically significant threshold. Given that psychological distress asso-

Bone Marrow Transplantation

ciated with BMT does not appear to differ by medical diagnosis or treatment status,33–36 we expected that this would also be true in our study. Second, we wished to identify the level of agreement between ratings of emotional distress, anxiety and depression by patients and nurses. Based on previous findings,14–17 we hypothesized that the association between staff and patient ratings of psychological distress as observed by the Pearson product-moment correlation coefficient would be moderate (approximately 0.35), with similar levels of agreement using Cohen’s kappa statistic being observed. Finally, we wished to examine the relative contributions of anxiety and depression to psychological distress and to determine whether these contributions differed according to the source (patients or staff). Since depression is often subtle or silent, we hypothesized that staff would identify emotional distress as symptoms of anxiety more frequently than depression, whereas patients may view psychological distress as composed of both anxiety and depression.

Methods Patients Fifty patients (31 males, 19 females) who were potential candidates for autologous or allogeneic BMT at the University of Michigan’s Comprehensive Cancer Center agreed to participate in this study. Individuals over the age of 18 who were potential candidates for a BMT, who were able to read and understand English, and who were able to give their own consent were included. Any individuals with a history of closed head injury or who were unable to read and understand English were excluded from the study. The study also excluded those individuals who were either deemed inappropriate candidates for BMT or who had indicated that they would pursue treatment elsewhere. Patients ranged in age from 23 to 70 years (M ⫽ 50.50, s.d. ⫽ 10.85). Time from diagnosis ranged from 0.5 to 144 months (M ⫽ 20.9, s.d. ⫽ 31.6). Medical and demographic characteristics of the sample are presented in Table 1. For ease of interpretation and comparison, treatment history and current medical status at the time of participation were each dichotomized. In particular, past treatment history was coded as either ‘one’ or ‘two or more’ courses of treatment, while current medical status was coded either as ‘in first remission’ or ‘other’ (ie relapsed disease, second or greater remission). Measures NCCN distress thermometer (DT): The DT has been developed by the National Cancer Center Network for identifying distress in patients with cancer. It has been described as a non-threatening way for patients to indicate distress that they may otherwise not report.9 The scale is a modified visual analog scale that looks like a thermometer and ranges from ‘0’ (no distress) to ‘10’ (extreme distress), with ‘5’ representing moderate distress. Patients are instructed to place a horizontal line at the number corresponding to their current level of distress. Although psycho-


Table 1

Medical and demographic characteristics of BMT patients n (%)

Diagnosis Leukemia (AML, ALL, CML) Lymphoma (Hodgkin’s, non-Hodgkins) Multiple myeloma Breast Other Medical status In first remission Other (relapsed disease, 2+ remission) Treatment history 1 course of treatment 2 or more courses Race Caucasian African-American Unknown Marital status Married Widowed Separated Never married Sex Male Female

15 (30.0) 15 (30.0) 11 (22.0) 4 (8.0) 5 (10.0) 5 (10.0) 45 (90.0) 26 (53.1) 23 (46.9) 40 (80.0) 4 (8.0) 6 (12.0) 38 (76.0) 1 (2.0) 1 (2.0) 10 (20.0)

Coordinator Rating Scale (CRS): The CRS was devised for the current study to provide a way for coordinators to rate patient anxiety and depression quickly and easily. The CRS was composed of two Likert-scale questions assessing anxiety and depression to provide a comparison with the anxiety and depression subscales of the HADS. The rating scale ranged from ‘0’ (not at all) to ‘10’ (very), with ‘5’ representing the midpoint of each scale. The two items measuring anxiety and depression were adapted from the Current State Questionnaire (a Likert-scale questionnaire developed to assess current mood states.41,42 Although the reliability and validity of these two specific items have not been ascertained, Lyubomirsky and Nolen-Hoeksema41 have reported that the scores on the larger scale are valid and highly correlated with Beck Depression InventoryShort from scores. In addition, Trask and Sigmon43 found that the Likert-type scale depression score changed in a manner consistent with changes in depression ratings on the Depression Adjective Checklist. As with the DT, a score of ⭓5 was used as the threshold for differentiating anxious from non-anxious and depressed from non-depressed patients.

919

31 (62.0) 19 (38.0)

Procedure

metrics have not been reported on the DT, similar visual analog scales are in common usage for the evaluation of pain and pain-related distress, have demonstrated reliability and validity, and have been shown to be responsive to changes over time and following interventions.37 In addition, the recent use of the DT in a group of prostate patients has demonstrated that it is a simple, unintrusive measure for identifying psychological distress in oncology patients.38 A score equal to or greater than ‘5’ has been identified as a threshold for differentiating distressed from non-distressed patients as this score has demonstrated a high concordance rate with cutoff scores on the HADS.38 Patients and coordinators in the current study used the DT to measure patients’ level of global distress, with a score of ⭓5 indicating the presence of distress. Hospital Anxiety and Depression Scale (HADS): The HADS is a 14-item questionnaire designed to assess anxiety and depression in medical patients. Somatic items which may be confounded with disease symptoms or treatment side-effects (eg weight loss, fatigue) have been removed to ensure more accurate assessment of this population. The HADS has been validated in a hospital population and has been found reliable on repeat administrations.26,39,40 Each subscale is composed of seven questions that are rated from ‘0’ to ‘3’ and are added to create a total score for each scale. Both liberal and conservative cutoff scores for identifying non-clinical, subclinical, and clinical cases of anxiety and depression have been reported.39 In particular, subscale scores of 11 or greater are considered indicative of clinical levels of anxiety or depression, whereas scores between 8 and 10 are considered to be in the borderline or subclinical range.39 These thresholds were used in the current study in order to identify levels of anxiety and depression.

Individuals were seen in the Blood and Marrow Transplant Program at the University of Michigan’s Comprehensive Cancer Center (UMCCC) for consultation following referral from hematologists or oncologists. This visit constitutes a consultation to determine whether BMT is an appropriate treatment option and occurs before a separate appointment when individuals give consent for the procedure. Potential BMT candidates who consented to participate in this study completed a questionnaire package that included the DT and the HADS at the UMCCC following consultation with the nurse transplant coordinator. Completed questionnaires were placed in a sealed envelope and given to support staff upon check-out. In order to ensure blindness of staff raters to patient ratings of psychological distress, nurse transplant coordinators completed corresponding questionnaire packages consisting of a DT and CRS for each participant in a separate process beyond the view of patients. Statistics All P values reported are two-tailed and all statistical analyses were performed using the Statistical Package for Social Sciences, version 10 (SPSS-10.0).44,45

Results Distress ratings Table 2 presents the average scores on each measure for the group overall and for subgroups divided by diagnosis, treatment history and medical status. On average, patient responses to the DT (scale 0–10) revealed low to moderate levels of psychological distress (M ⫽ 4.17). Fifty percent of patients reported distress ⭓5 on the DT. Patient Bone Marrow Transplantation


920

Table 2

Mean psychological distress scores for treatment history and medical status

Overall sample Diagnosis Leukemia (AML, ALL, CML) Lymphoma (Hodgkin’s, non-Hodgkins) Multiple myeloma Breast Other Medical status In first remission Other (relapsed disease, 2+ remission) Treatment history 1 course of treatment 2 or more courses

Patient DT

HADS-A

HADS-D

Coordinator DT

CRS-Anxiety

CRS-Depression

4.17 (2.49)

7.65 (2.76)

4.38 (2.71)

3.72 (2.03)

2.88 (2.26)

1.32 (1.76)

4.03 (2.31) 4.98 (2.45) 3.00 (2.86) 3.92 (1.25) 5.1 (2.70)

6.79 (2.52) 8.87 (3.14) 6.82 (2.60) 9.00 (0.82) 7.2 (2.59)

3.71 (2.92) 5.33 (2.58) 4.18 (2.82) 4.25 (3.50) 4.00 (1.58)

3.53 (2.00) 3.80 (2.14) 3.45 (2.34) 4.50 (1.73) 4.00 (1.87)

3.00 (2.03) 3.00 (2.48) 2.27 (2.41) 3.75 (1.89) 2.80 (2.77)

1.73 (2.31) 1.47 (1.81) 0.18 (0.40) 1.75 (1.26) 1.80 (1.30)

4.00 (2.34) 4.19 (2.53)

8.2 (2.28) 7.59 (2.82)

4.20 (3.03) 4.41 (2.70)

3.20 (2.17) 3.78 (2.03)

2.40 (2.07) 2.93 (2.30)

0.60 (1.34) 1.40 (1.80)

4.29 (2.66) 4.10 (2.40)

7.58 (2.56) 7.95 (2.90)

4.50 (2.76) 4.27 (2.76)

3.77 (2.06) 3.57 (2.02)

2.65 (2.24) 3.04 (2.32)

1.11 (1.68) 1.39 (1.75)

Standard deviations are in parentheses. DT ⫽ Distress Thermometer, HADS ⫽ Hospital Anxiety and Depression Scale, CRS ⫽ Coordinator Rating Scale.

responses on the HADS (scales 0–21) revealed levels of low to moderate anxiety (M ⫽ 7.65) just below the subclinical range, and low levels of depression (M ⫽ 4.38) for the group. Further examination of the HADS anxiety and depression scales revealed that 51% of the sample exceeded the threshold score of 8 for significant levels of anxiety (ie subclinical or clinical), but less than 20% exceeded that same threshold for depression. As such, our first hypothesis that 30% of patients would score above the clinically significant threshold was partially correct because half of the patients reached this threshold in two out of the three areas (ie psychological distress and anxiety). Coordinator ratings of patient distress using the DT were slightly lower than patient reports (M ⫽ 3.72), but this difference was not significant, t (48) ⫽ 1.35, P ⫽ 0.183, NS. Coordinators rated 38% of patients ⭓5 on the DT. Coordinator ratings of patient anxiety and depression using the CRS (scale 0–10) revealed low levels of both anxiety (M ⫽ 2.88) and depression (M ⫽ 1.32). More specifically, coordinators rated 26% of patients to have anxiety, but only 8% to have depression greater than or equal to 5 on the CRS. One-way analyses of variance were computed to determine whether ratings differed by a patient’s diagnosis, treatment history or current medical status. No significant differences were observed with respect to these variables for DT scores, HADS anxiety or depression scales or CRS responses by coordinators.

correlation coefficients was constructed for the scores on the DT, HADS and CRS within and between patient and coordinator responses. Table 3 presents the correlations within patient ratings within coordinator ratings, and between patients and coordinators.

Correlations between ratings

DT ⫽ Distress Thermometer; HADS-A ⫽ Hospital Anxiety and Depression Scale-Anxiety; HADS-D ⫽ Hospital Anxiety and Depression Scale-Depression; CRS ⫽ Coordinator Rating Scale; * ⫽ P ⬍ 0.05; ** ⫽ P ⬍ 0.01; *** ⫽ P ⬍ 0.005; **** ⫽ P ⬍ 0.001.

In order to determine the degree of association between ratings, a correlation matrix of Pearson product-moment Bone Marrow Transplantation

Patient self-ratings of psychological distress: Patient selfratings of psychological distress using the DT and the HADS anxiety and depression scores were not equally correlated. Interestingly, HADS anxiety scores significantly Table 3 and CRS

Correlations within patients and coordinators DT, HADS

Patient correlations HADS-Anxiety HADS-Depression Coordinator correlations CRS Anxiety CRS Depression Patient and coordinator correlations

DT 0.416* 0.234 DT 0.908*** 0.438*** Coordinator

Patient DT HADS-A HADS-D

DT

CRS Anxiety

0.490**** 0.353* 0.064

0.540**** 0.300* —

CRS Depression 0.375** — ⫺0.154


correlated with DT ratings, but HADS depression scores did not. This suggests that patient ratings of psychological distress increased with ratings of anxiety, but not with depression. Coordinator ratings of patient emotional distress: Correlations between the coordinator ratings of patient emotional distress, anxiety, and depression using the DT and CRS were similar to patient reports. In particular, correlations between the DT and anxiety were much greater than between the DT and depression, although both correlated significantly with general emotional distress. Thus as coordinator ratings of patient distress increased, so did their ratings of both patient anxiety and depression. Correlations between patient and coordinator ratings: Association between ratings of psychological distress, anxiety and depression by patients and coordinators were also examined. Patient DT ratings correlated significantly with all coordinator ratings (DT, CRS anxiety, CRS depression). Indeed, the correlation between patient and coordinator ratings of distress was greater than the moderate correlation of 0.35 proposed in our second hypothesis. By contrast, coordinator DT ratings correlated only with HADS anxiety ratings and not with HADS depression ratings by patients. This finding demonstrates that as patients reported higher levels of anxiety and psychological distress, the coordinators also reported more patient anxiety and emotional distress. HADS anxiety ratings significantly correlated with CRS anxiety ratings, but did not correlate with CRS depression ratings. This latter finding suggests a much better association of perceptions of anxiety between patient and coordinator than perceptions of depression. The positive correlations between patient and coordinator ratings of psychological distress and anxiety coupled with the percentage of coordinators who rated patients above the threshold on the DT provide evidence that coordinators believe that anxiety and emotional distress are present in many patients at this stage of the BMT process. Patient–coordinator agreement on the Distress Thermometer Positive correlations and percentages above threshold do not in and of themselves provide information as to the level of agreement or consistency between patient and coordinator reports. In order to determine this level of agreement, scores were divided into two categories based on the threshold recommended by Roth et al.38 (non-distressed ⬍5; distressed ⭓5). Based on this threshold, 50% of the patients reported distress ⭓5, a proportion that agrees well with the 51% identified above threshold on the HADS anxiety scale. Coordinators independently reported 38% of patients above the same DT threshold. Table 4 shows the distribution of patient and coordinator ratings of patient distress in addition to the agreement between the two raters. Agreement, or the ability for coordinators to accurately identify the level of patient distress, can be seen in the upper left and lower right quadrants of Table 4. Coordinators identified 21 out of 25 (84%) of the patients who reported themselves as non-distressed (⬍5). In contrast, they identified

Table 4 Distribution and agreement of perception of psychological distress according to patient and coordinator ratings on the Distress Thermometer

Coordinator No distress (⬍5) Distress (⬎5) Total

No distress (⬍5)

Patient distress (⬎5)

Total

21 (84%) 4 (16%) 25 (50%)

10 (40%) 15 (60%) 25 (50%)

31 (62%) 19 (38%) 50 (100%)

921

only 15 of the 25 (60%) of the patients who thought they had high levels of distress (⭓5). Agreement between patient and coordinator was significant (kappa ⫽ 0.440, P ⬍ 0.001) suggesting reasonably accurate identification of patient distress by coordinators. This categorization goes beyond correlation coefficients in that it provides an indication of coordinator ability to identify different levels of patient distress. Moreover, this analysis provides further support for our second hypothesis that predicted the moderate levels of patient–staff agreement in the identification of psychological distress. Shared and unique contributions to distress ratings We investigated the difference in correlations between patient and coordinator ratings of anxiety and depression with DT ratings by multiple regression analyses. Partial correlations were analyzed in order to determine the relative contributions of anxiety and depression ratings to patient and coordinator ratings of general psychological distress. Partial correlations reflect the correlation between the predictor and criterion variable after the linear effect of other variables in the equation has been removed.44,45 Patient Psychological Distress Ratings: Patient HADS ratings of depression and anxiety were entered simultaneously into a regression equation with patient DT ratings as the criterion variable. Together, only 17.4% of the variability in the phenomena of psychological distress as measured by the DT was accounted for by HADS anxiety and depression ratings (R2 ⫽ 0.174, R ⫽ 0.417, P ⫽ 0.014), with most of this accounted for by anxiety ratings (␤ ⫽ 0.399, P ⫽ 0.014). Depression contributed a negligible amount to the definition of psychological distress (␤ ⫽ 0.035, P ⫽ 0.823, NS). Examination of partial correlation coefficients indicated that HADS anxiety ratings significantly correlated with patient DT ratings after adjusting for HADS depression ratings (r ⫽ 0.355, P ⬍ 0.02). HADS depression ratings, however, were not significantly correlated with patient DT ratings after adjusting for HADS anxiety ratings (r ⫽ 0.033, P ⫽ 0.82, NS). Thus these results suggest that patients see anxiety as contributing to distress, but not synonymous with psychological distress. Indeed, these results strongly suggest that for patients, psychological distress is composed of something more than just anxiety and has little relation to depression. These results therefore only partially support the second half of our third hypothesis that patients Bone Marrow Transplantation


922

would view psychological distress as a combination of anxiety and depression. Coordinator Emotional Distress Ratings: The same procedures were conducted on coordinator DT ratings using coordinator CRS ratings of anxiety and depression as predictors. Coordinator CRS ratings of anxiety and depression together accounted for 83.2% of the variability in the phenomena of emotional distress as measured by the DT (R2 ⫽ 0.832, R ⫽ 0.912, P ⬍0.001), with almost all of this being accounted for by anxiety ratings (␤ ⫽ 0.966, P ⬍ 0.001). As with the patient ratings, the contribution of depression to the definition of emotional distress was not significant (␤ ⫽ ⫺0.103, P ⫽ 0.16, NS). Examination of partial correlation coefficients indicated that CRS ratings of anxiety were significantly correlated with coordinator DT ratings after adjusting for CRS depression (r ⫽ 0.890, P ⬍0.001), but CRS depression ratings were not correlated significantly with DT ratings after adjusting for CRS anxiety (r ⫽ ⫺0.204, P ⫽ 0.160, NS). These results suggest that coordinators see anxiety as contributing to emotional distress, but unlike patients, coordinators appear to view anxiety as synonymous with psychological distress. These results support the first half of our third hypothesis that staff would identify emotional distress as symptoms of anxiety more frequently than depression. Discussion Attempts to determine the presence of psychological distress in individuals undergoing a BMT have focused primarily on the post-BMT recovery period. In a review of the literature on distress in BMT survivors, Neitzert et al.33 presented several studies reporting that patients had high levels of anxiety and depression following BMT. In particular, 33% of a sample of women receiving autologous BMT for breast cancer scored above a cut-off for clinical depression at 9 months after transplant.34 In another study, 48% and 45% of patients who had received an allogeneic BMT reported moderate levels of anxiety and depression (ie ⭓60 on the anxiety and depression scales of the Brief Symptom Inventory), respectively, 1 year after transplant.35 Finally, in a study using the HADS to measure psychosocial morbidity in BMT patients with a variety of malignant diagnoses, 54% of the sample reported depression or anxiety scores above the clinical cutoff.36 The results of these studies suggest that one-third to one-half of BMT patients experience continued clinical levels of psychological distress (anxiety or depression) for an extended period after BMT. In contrast to the research on adjustment after BMT, significantly less research has investigated the presence of emotional distress in individuals prior to transplantation. The research that has been conducted in this area has focused on assessment of psychological distress present in patients during the informed consent process. The informed consent process has been identified as a time of great potential stress when individuals are faced with a decision as to whether to undergo a difficult procedure that has significant morbidity and mortality.29,46 In support of this notion, one


study indicated that patients demonstrated elevated psychological distress levels when compared to published nonpatient norms.47 Andrykowski29,46 noted the importance of distress at the informed consent process given its potential to adversely affect communications with transplant personnel, comprehension of transplant information, and patient memory. This has resulted in recommendations to examine distress recommendations to examine distress earlier in the BMT process, such as during an initial evaluation by a BMT program or through contact with the referring hematologist or oncologist, as well as during critical periods during the BMT process (eg at informed consent and admission, at discharge, and at various follow-up appointments thereafter).29,30 Despite calls for earlier examination of patient experiences, indications of significant distress at the time of informed consent, and its potentially negative consequences,29,30,46,47 research has not focused on the assessment of distress prior to informed consent. In particular, research has not included a potentially stressful timepoint within the BMT trajectory, that of the consultation to determine the appropriateness of BMT as therapy for the patient. Given that this appointment may represent the opportunity for some patients to discuss their last treatment option, and given the general perception of the toxicity of BMT, the current study sought to determine prevalence and intensity of patient psychological distress at this time. We found that approximately half of patients already experience significant levels of emotional distress at the time of BMT consultation. This number exceeded the 30% that we expected in our first hypothesis based on previously published reports.1–3 The proportion of patients reporting psychological distress in this study is consistent with that reported in research with patients at other points in the BMT process,33–36 and provides evidence that such distress is present in patients even before the BMT consent procedure has been recommended. Moreover, these findings suggest that anxiety (often discussed as a fear or worry about future events) is more prevalent than depression (often focused on concerns about the past). For example, patients may be anxious regarding whether a BMT will be an available treatment option in addition to concerns regarding the potential outcomes of such a procedure. This significant level of psychological distress in approximately half of BMT candidates argues that assessment of distress should begin much earlier in the BMT process. It also suggests that patient education efforts, which could be significantly impaired by psychological distress, may need to be modified for the level of anxiety. Coordinators reported that a significant, albeit slightly lower, proportion (38%) of patients had significant levels of emotional distress. Agreement between patients and coordinators was addressed in two ways: through correlations on the DT and through the identification of patients with significant levels of emotional distress. Correlations between patient and coordinator ratings of psychological distress, although statistically significant, were not very high. Similarly good correlations were reported for ratings of anxiety, but not for ratings of depression. This level of association between patients and coordinators exceeded those reported in the literature11–20,23 and exceeded the level


predicted in our second hypothesis that such correlations would be moderate. The fact that coordinators had a tendency to underestimate the presence of high levels of emotional distress is also consistent with previous research suggesting that non-psychiatric medical staff have difficulty identifying psychological distress.21,22 A potential explanation for this discrepancy is that coordinators were able to identify overt emotional distress within patients, but had greater difficulty identifying its more subtle signs. Alternatively, patients may deliberately not have disclosed psychological distress in relation to the consultation to coordinators for fear of ‘jeopardizing’ their prospects for a transplant. This explanation would be consistent with studies that indicate the reluctance of patients to report psychological distress to non-psychiatric staff.10–13 An interesting finding is that the relative contributions of anxiety and depression to the phenomenon of emotional distress differed for patients and coordinators. In particular, anxiety and depression together only accounted for a small amount of the variability in the definition of psychological distress for patients, leaving the majority of the variability in distress unexplained. In contrast, anxiety and depression together accounted for most of the variability in coordinators’ definition of emotional distress. These findings suggest that patients and coordinators defined distress very differently, and only partially supported our third hypothesis that patients would view psychological distress as a combination of anxiety and depression, whereas coordinators would view emotional distress predominantly as anxiety. For participants in the current study, the low contribution of anxiety and depression to psychological distress suggests that perceptions of their own distress were not adequately captured by simple measures of anxiety and depression (the HADS). It is possible that patient perception of psychological distress included somatic symptoms of physical pain or discomfort. Medical variables such as treatment status did not account for this difference, but future research efforts may include a measure of symptom distress to provide additional information on this issue (see below). Another possibility is that the patient definition of distress is qualitatively different from symptoms of anxiety and depression. For example, a patient may not recognize anger as a potential symptom of depression, but may indicate psychological distress nonetheless. Elucidation of this possibility may also be addressed in the future through inclusion of additional categories that contribute to psychological distress. In contrast to ratings by patients, ratings by coordinators of distress were captured almost completely by anxiety. One explanation for this may be that coordinators may have defined emotional distress as the observable signs of anxiety (eg excessive questions, rapid speech, nervousness, and postural shifting), thus missing the less visible, subtle signs of depression. Our results are consistent with previous research indicating high detection rates by staff members of anxiety, but poor detection rates of depression.16 Such differing definitions of psychological distress may explain why correlations of the same constructs varied significantly for patients and coordinators. In particular, examination of the Pearson product-moment correlation coefficients of anxiety and depression with emotional distress were much lower for patients than coordinators. General

distress, depression, and anxiety appear to represent related, but discrete independent constructs of psychological distress as rated by patients. By comparison, coordinator ratings of emotional distress were so highly correlated with ratings of anxiety as to be measuring the same construct. Several caveats of the current study should be noted. First, the small sample size (n ⫽ 50 dyadic ratings) and the restriction to a single location may limit its generalizability. Nevertheless, these findings suggest that psychological distress is present at this initial stage of evaluation for BMT and further investigation is warranted. In addition, the robustness of the results as demonstrated by the highly statistically significant correlations argues that these associations are not spurious and should be replicable in other samples. Second, data were not obtained regarding the number of individuals who declined to participate in the study. As such, it is unknown whether the level of psychological distress identified in this group reflects the general status of patients at the time of consultation for BMT. The consistency of these findings with previously reported studies of psychological distress in BMT patients29,30,32–36,46 makes it likely, however, that this sample was representative. Third, very brief measures of emotional distress were used in order to impact minimally on clinic procedures. Although useful, these measures do not provide the same depth of detail that might be needed to determine the full spectrum of emotional distress. The variability in the HADS scales regarding the definition of psychological distress would support this assertion and suggests that a more detailed assessment may be beneficial since the construct of distress as reported by patient self-evaluation is not defined by anxiety and depression alone. As previously noted, psychological distress may result from physical symptoms or other problems such as economic, family or spiritual concerns not identified by the DT used in the current study. Awareness of this deficit has resulted in a modification to the DT by the NCCN (Paul Jacobsen, personal communication). The new DT includes a section that asks patients to identify whether their distress was the result of practical, family, emotional, or physical problems or spiritual concerns. Use of the revised DT in future studies should allow for a greater understanding of the reasons for emotional distress and the contribution of physical problems to distress in patients with cancer. In this light, it is possible that the HADS may not be the optimal instrument for assessing depression in cancer patients because it was specifically developed to eliminate the somatic symptoms of depression. While the removal of somatic items reduces the possibility of confusing physical symptoms that are the result of cancer or its treatment with those that are the result of psychological depression, it also reduces the sensitivity of the HADS to detect depression as compared to anxiety. Thus future research using a measure of depression that includes somatic symptoms (such as the Beck Depression Inventory), may identify greater numbers of depressed patients. Finally, the use of unstandardized measures of anxiety and depression by coordinators weakens the comparison of coordinator and patient ratings on the HADS. While the use of only two items to measure anxiety and depression ensured the ease of test administration, the reliability and

923



924

validity of those questions requires independent confirmation and our conclusions must remain tentative. In order to address these latter issues, attempts will be made in future studies to include more separate, extensive, standardized measures for ratings by both patients and coordinators.

17 18 19

Acknowledgements This study was funded by the University of Michigan Faculty Group Practice VIF No. 99–101 and NIH grant P30 CA46592.

References 1 Farber DM, Wienerman BH, Kuypers JA. Psychosocial distress in oncology outpatients. J Psychosocial Oncol 1984; 2: 109–118. 2 Trask PC, Paterson AG, Hayasaka S et al. Psychosocial characteristics of individuals with non-stage IV melanoma. J Clin Oncol 2001; 19: 2844–2850. 3 Stefanek ME, Derogatis LP, Shaw A. Psychological distress among oncology outpatients. Psychosomatics 1987; 28: 530– 539. 4 Hann DM, Jacobsen PB, Martin SC et al. Quality of life following bone marrow transplantation for breast cancer: a comparative study. Bone Marrow Transplant 1997; 19: 257–264. 5 Sutherland HG, Fyles GM, Adams Y et al. Quality of life following bone marrow transplantation: a comparison of patient reports with population norms. Bone Marrow Transplant 1997; 19: 1129–1136. 6 Fawzy FI, Cousings N, Fawzy NW et al. A structured psychiatric intervention for cancer patients: I. Changes over time in methods of coping and affective disturbance. Arch Gen Psychiatry 1990; 47: 720–725. 7 Spiegel D, Sephton SE, Stites DP. Effects of psychosocial treatment in prolonging cancer survival may be mediated by neuroimmune pathways. Ann N Y Acad Sci 1998; 840: 674– 683. 8 Andersen BL. Psychological interventions for cancer patients to enhance the quality of life. J Consult Clin Psych 1992; 60: 552–568. 9 Holland JC. Preliminary guidelines for the treatment of distress. Oncology 1997; 11: 109–114. 10 Maguire P. Improving the detection of psychiatric problems in cancer patients. Soc Sci Med 1985; 20: 819–823. 11 Passik SD, Dugan W, McDonald MV et al. Oncologists’ recognition of depression in their patients with cancer. J Clin Oncol 1998; 164: 1594–1600. 12 Koller M, Kussman J, Lorenz W et al. Symptom reporting in cancer patients: the role of negative affect and experienced social stigma. Cancer 1996; 77: 983–995. 13 Burrows AB, Datlin A, Salzman C, et al. Depression in a long-term care facility: clinical features and discordance between nursing assessment and patient interviews. J Am Geriatr Soc 1995; 43: 1118–1122. 14 Sensky T, Dennehy M, Gilbert A et al. Physicians’ perceptions of anxiety and depression among their outpatients: relationships with patients and doctors’ satisfaction with their interviews. J R Coll Physicians Lond 1989; 23: 33–38. 15 Slevin M, Plant H, Drinkwater J et al. Who should measure quality of life, the doctor or the patient? Cancer 1988; 57: 109–112. 16 Lampic C, von Essen L, Peterson V et al. Anxiety and Bone Marrow Transplantation

20

21 22 23

24 25

26 27 28 29 30 31 32

33 34

35

36 37

depression in hospitalized patients with cancer: agreement in patient–staff dyads. Cancer Nurs 1996; 19: 419–428. Lampic C, Sjoden P-O. Patient and staff perceptions of cancer patients’ psychological concerns and needs. Acta Oncol 2000; 39: 9–22. Jennings B, Muhlenkamp A. Systematic misperception: oncology patients’ self-reported affective states and their caregivers’ perceptions. Cancer Nurs 1981; 4: 485–489. Husted S, Johnson J. Oncology clients’ affective states and their nurses’ expectation of clients’ affective states. Cancer Nurs 1985; 8: 159–165. Faller H, Lang H, Schilling S. Emotional distress and hope in lung cancer patients, as perceived by patients, relatives, physicians, nurses, and interviewers. Psycho-Oncol 1995; 4: 21– 31. Maguire P, Tait A, Brooke M et al. Effect of counselling on the psychiatric morbidity associated with mastectomy. Br Med J 1980; 281: 1454–1456. Von Essen L, Burstrom L, Sjoden P-O. Perceptions of caring behaviors and patient anxiety and depression in cancer patient–staff dyads. Scand J Caring Sci 1994; 8: 205–212. Sollner W, DeVries A, Steixner E et al. How successful are oncologists in identifying patient distress, perceived social support, and need for psychosocial counseling? Br J Cancer 2001; 84: 179–185. Lampic C, Nordin K, Sjoden P-O. Agreement between cancer patients and their physicians in the assessment of patient anxiety at follow-up visits. Psycho-Oncol 1995; 4: 301–310. Skarstein J, Aass N, Fossa SD et al. Anxiety and depression in cancer patients: relation between the Hospital Anxiety and Depression Scale and the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire. J Psychosom Res 2000; 49: 27–34. Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand 1983; 67: 361–370. Derogatis LR, Melisaratos N. The Brief Symptom Inventory: an introductory report. Psychol Med 1983; 13: 595–605. Derogatis LR. SCL-90-R: Administration, Scoring, and Procedures Manual, 2nd edn. Clinical Psychometric Research: Towson, MD, 1983. Andrykowski MA. Psychiatric and psychosocial aspects of bone marrow transplantation. Psychosomatics 1994; 35: 13– 24. Fife BL, Huster GA, Cornetta KG et al. Longitudinal study of adaptation to the stress of bone marrow transplantation. J Clin Oncol 2000; 18: 1539–1549. Gale RP. Progress in bone marrow transplantation in man. Surv Immunol Res 1982; 1: 40–66. Colon EA, Callies AL, Popkin MK, McGlave PB. Depressed mood and other variables related to bone marrow transplantation survival in acute leukemia. Psychosomatics 1991; 32: 420–425. Neitzert CS, Ritvo P, Dancey J et al. The psychosocial impact of bone marrow transplantation: a review of the literature. Bone Marrow Transplant 1998; 22: 409–422. McQuellon RP, Craven B, Russell GB et al. Quality of life in breast cancer patients before and after autologous bone marrow transplantation. Bone Marrow Transplant 1996; 18: 579–584. Syrjala KL, Chapko MK, Vitaliano PP et al. Recovery after allogeneic marrow transplantation: prospective study of predictors of long-term physical and psychosocial functioning. Bone Marrow Transplant 1993; 11: 319–327. Leigh S, Wilson KCM, Burns R, Clark RE. Psychosocial morbidity in bone marrow transplant recipients: a prospective study. Bone Marrow Transplant 1995; 16: 635–640. Jensen MP, Karoly P. Self-report scales and procedures for


38 39 40

41 42

assessing pain in adults. In Turk DC, Melzack R (eds). Handbook of Pain Assessment. Guilford: NY, 1992, pp. 135–151. Roth AJ, Kornblith AB, Batel-Copel L et al. Rapid screening for psychologic distress in men with prostate carcinoma: a pilot study. Cancer 1998; 82: 1904–1908. Moorey S, Greer S, Watson M et al. The factor structure and factor stability of the hospital anxiety and depression scale in patients with cancer. Br J Psychiatry 1991; 158: 255–259. Hopwood P, Howell A, Maguire P. Screening for psychiatric morbidity in patients with advanced breast cancer: validation of two self-report questionnaires. Br J Cancer 1991; 64: 353–356. Lyubomirsky S, Nolen-Hoeksema S. Self-perpetuating properties of dysphoric rumination. J Pers Soc Psych 1993; 65: 339–349. Nolen-Hoeksema S, Morrow J, Fredrickson BL. Response

43 44 45 46 47

styles and the duration of episodes of depressed mood. J Abnormal Psych 1993; 102: 20–28. Trask PC, Sigmon ST. Ruminating and distracting: the effects of sequential tasks on depressed mood. Cog Ther Res 1999; 23: 231–246. SPSS Inc. SPSS Base 10.0 User’s Guide. SPSS: Chicago, 1999a. SPSS Inc. SPSS Base 10.0 Applications Guide. SPSS: Chicago, 1999b. Andrykowski MA. Psychosocial factors in bone marrow transplantation: a review and recommendations for research. Bone Marrow Transplant 1994; 13: 357–375. Dermatis H, Lesko LM. Psychosocial correlates of physician– patient communication at time of informed consent for bone marrow transplantation. Cancer Invest 1991; 9: 621–628.

925
