Abstract
Family caregivers of allogeneic hematopoietic stem cell transplant (HSCT) patients are at risk for experiencing significant psychological distress yet screening caregivers has not been well studied.
Objective
This analysis explored the psychometric characteristics of the Distress Thermometer (DT) by examining its relationship, sensitivity and specificity relative to the Brief Symptom Inventory 18 (BSI-18) and the Multidimensional Fatigue Symptom Inventory (MFSI) in a sample of allogeneic HSCT caregivers and patients.
Methods
Longitudinal data were drawn from an ongoing intervention study for HSCT caregivers and patients. Data from one hundred and fifty-six English-speaking adults where patients (n=65) were receiving their first allogeneic HSCT with at least one adult caregiver (n=91) were eligible for this analysis. Study questionnaires were administered at baseline, initial discharge and 6 weeks following discharge.
Results
Construct validity was supported by significant relationships (p<0.001) between the DT and the BSI-18 GSI and the MFSI-Emotional subscales for caregivers and patients. The diagnostic utility of the DT for patients was good (AUC=.85±.05, p=.001), while for caregivers it was poor (AUC=.61±.08, p=.28). A DT cut point of 5 was supported for patients (sensitivity=1.0, specificity=.68), while for caregivers there was less confidence (sensitivity=.70, specificity=.52). Caregivers and patients reporting a higher number of problems had a greater level of distress (p<0.001).
Conclusions
These findings support the validity of the DT in screening for distress in HSCT caregivers and patients. Although the diagnostic utility of the DT for HSCT caregivers may be limited, understanding factors associated with distress can guide practice for this understudied population.
Keywords: Cancer, Oncology, Distress Thermometer, Distress screening, Validity, Accuracy
Introduction
The intensity of an allogeneic HSCT requires that a caregiver, commonly a family member, be available for the patient. The HSCT experience places both caregivers and transplant patients at high risk for significant levels of psychological distress. Although caregiver distress has been shown to improve over time, studies suggest that caregivers have levels of psychological distress that are at least equal to and in some cases, higher when compared to the patient and healthy groups [1–3]. The prevalence of distress and recognition that caregivers and patients can have similar levels of distress is found in other cancer populations [2, 4–11] with suggestions that caregiver levels are higher when compared to healthy controls [12] which may indicate serious levels of psychological illness[13]. Despite this experience, caregivers are less likely to seek services for themselves while serving as a caregiver [14].
Caregiver distress can impact individual health as well as the health of the patient. Distressed cancer caregivers report poor sleep quality and increased fatigue [15] along with unhealthy behaviors [16]. If family dysfunction or conflict occurs there can be increased conflict between the transplant team, the patient and the family [17] as well as a greater severity of patient symptoms [18, 19]. In addition, cancer patients have reported a delay in initiating self care behaviors when a family member was not present[20]. Distressed HSCT patients are already more likely to self report non-adherence, depression, sleep concerns, and the use of prescription medications for anxiety or depression [21]. Moreover, patients with higher levels of psychological distress before or during HSCT may have an increased length of inpatient hospital stays [22, 23].
Despite increasing awareness of psychosocial distress as a critical component of quality cancer care [24], distress screening of HSCT caregivers and patients across the trajectory is not well understood. The Distress Thermometer (DT) is a single-item self-report measure for the assessment of distress in cancer patients [25]. The majority of psychometric testing with the DT has used the Hospital Anxiety and Depression Scale (HADS) as the standard measure of psychological distress while the Brief Symptom Inventory-18 has been administered in only two studies [26, 27]. In a pooled sample of cancer patients, across multiple standard measures, findings supported a DT score of 4 as modestly effective in detecting depression (sensitivity 80.9%, specificity 60.2%), anxiety (sensitivity 77.3%, specificity 56.6%) and distress (sensitivity 77.1%, specificity 66.1%). Specific to the BSI-18, one study in cancer patients reports good discrimination [Area Under the Curve (AUC) of 0.80] with sensitivity and specificity reported for scores of 4 (0.90, 0.53 respectively) and 5 (0.70, 0.64 respectively) [27]. A second study reports a moderate relationship (r=0.61) between the DT and the BSI-18 and again, good discrimination (AUC=0.78) and agreement (sensitivity 0.70, specificity 0.70) for a DT score of 4[28]. Specific to HSCT patients, one study focused specifically on depression with the Center for Epidemiological Studies Depression Scale (CES-D) as the standard measure finding an AUC of 0.75 with a sensitivity of 0.80 and specificity of 0.70 for a DT score of 4 [29].
Relative to HSCT caregivers, no distress screening measure has been tested. In a sample of cancer caregivers, one study used the HADS anxiety and depression subscales to validate the DT and reported good discrimination for both scales (AUC=0.88, 0.84, respectively). In addition, a DT score of 5 yielded sensitivity/specificity of 86.2/88.2 for anxiety and 71.2/67.6 for depression [15] suggesting good accuracy relative to the HADS.
The purpose of this analysis is to explore the psychometric characteristics of the DT by examining its relationship with the BSI-18 in a sample of allogeneic HSCT caregivers and patients. The sensitivity and specificity of the DT relative to psychological distress as indicated on the BSI-18 also was explored. Since few studies have reported on the DT in non-cancer patients, the relationship between the DT and the Multidimensional Fatigue Symptom Inventory-short form (MFSI-SF) was also explored hypothesizing that the DT would have a positive relationship with the MFSI-SF Emotional subscale and a negative relationship with the MFSI-SF Vigor subscale. In addition, the relationship between the DT and the problems that were reported across the transplant trajectory were examined.
Methods
Design & Subjects
Longitudinal data were drawn from an ongoing intervention study aimed to minimize distress (BSI-18) and increase self-efficacy in HSCT caregiver and patient teams (clinical trials # NCT00766883). Subjects (caregivers n=91; patients n=65) were English-speaking adults where patients were receiving their first allogeneic HSCT. A caregiver and patient team was eligible if there was at least one adult caregiver available and interested in participation. No more than three caregivers per patient were eligible to participate. If a caregiver was not identified or if either the caregiver or patient declined to participate, neither was enrolled.
Study questionnaires were administered at three time-points: pre-HSCT (baseline), discharge (initial discharge following HSCT) and six weeks after initial discharge from HSCT. Demographic variables self-reported by caregivers and patients included: age, gender, race, ethnicity, marital status, and education level. The transplant patient's clinical variables were collected from the clinical research record and include: primary disease, stem cell source, HLA disparity/donor, dates of hospital admission, HSCT and discharge, and performance status (ECOG). The caregiver's clinical variables were collected by study investigators and include: chronic health problems, performance status (ECOG), and Body Mass Index (BMI).
The intervention underlying this study originated as the Prepared Family Caregiver model providing problem-solving education to caregivers to effectively address medical and psychosocial problems relative to their caregiving experience (Houts PS et al., 1996, Loscalzo MJ & Bucher, 1999). This education model has demonstrated effectiveness in patients with advanced cancer and their family caregivers (McMillian SC et al., 2006; Bucher JA et al., 2001) with the objective to empower caregivers (and patients) to cope with cancer and cancer treatments.
Measures
The DT is an 11 point visual analog scale ranging from 0 to 10 in which subjects are asked to circle the number that best corresponds with their level of distress in the past seven days (0 = no distress and 10 = extreme distress)[25]. A cut-off score of 4 has been recognized as a level of significant distress in cancer patients suggesting a need for further evaluation [28, 29], while a cutoff score of 5 has also been suggested [30]. The Problem List is a component of the DT and consists of 36 problems commonly experienced by cancer patients that are grouped into 5 categories [practical (5 items), family (3 items), emotional (6 items), spiritual/religious (1 item), and physical (21 items)]. Respondents indicate whether or not (yes or no) any of the items listed has been a problem in the past week.
The BSI-18 is a 18 item self-report measure of psychological distress that produces one global symptom index (GSI) and three subscale scores: anxiety, depression, and somatization[31]. Each item is rated on a 5-point scale, ranging from not at all (0) to extremely (4) distressed. The BSI-18 has been shown to be useful for psychosocial screening in cancer patients experiencing elevated levels of distress with strong internal consistency (Cronbach's alpha is 0.89) and test-retest reliability properties [31, 32]. To determine clinically meaningful psychological distress, an individual's score is converted to a standardized score (T-score). If the BSI-18 GSI T-score is ≥63 or if two or more of their subscales (anxiety, depression, somatization) have T-scores ≥63 the individual is considered to have clinically meaningful distress.
The MFSI-SF is used to assess various dimensions of fatigue. Originally created for use with cancer patients, the measure has been effectively used with other populations due to its non-disease specific characteristic [33]. This scale has been utilized in patients with various cancers, orofacial pain populations, and healthy subjects[33–36]. The MFSI-SF contains 30 items derived from the original 82-item MFSI. Subjects are asked to rate their level of fatigue in the past week on a scale ranging from 0 (not at all) to 4 (extremely). Five fatigue subscales make up the measure: general, physical, vigor (reverse scored), emotional, and mental. The original study indicated internal consistency reliability for each of the subscales with alpha coefficients ranging from 0.87 to 0.96[33].
Analyses
Descriptive statistics characterize caregivers and patients at baseline. All analyses were performed separately for caregiver and patients. Means and standard deviations were calculated for the DT, the BSI-18 and MFSI-SF. Pearson product-moment correlations were calculated to examine the relationship of the DT with the BSI-18 and MFSI-SF scores and the relationship between the DT score and number of problems reported.
Receiver operating characteristics (ROC) analysis was conducted to examine the ability of the DT to screen subjects with psychological distress according to the BSI-18 criteria. Subjects are classified as clinically distressed if the T-score of the BSI-18 GSI is ≥63 or any two subscale scores are ≥63.
Results
Caregiver (cg) and Patient (pt) demographic and clinical characteristics
Of the two hundred and eighty-six subjects (n=157 cg; n=128 pt) screened for participation in the intervention study, one hundred and fifty-six subjects [n=91 cg (58%); n=65 pt (51%)] were eligible for this analysis (Table 1). Seventy-eight individuals (27%) were not eligible for study participation, 46 (16%) declined participation, and 6 (2%) withdrew after initial enrollment. At the time of this analysis, subject attrition (after pre-HSCT survey completion) was related to an option to complete baseline surveys only (n=19; cg n=10, pt n=9), patient death (n=11; cg n=8; pt n=3), and caregiver scheduling conflict/unavailability (n=18; cg n=9; pt n=9). Pre-transplant assessments (T1) were completed a median of 14 days (range 0–98) prior to HSCT (day 0). The initial in-patient length of stay (day 0 to discharge) was a median of 22 (range 5–88) days with discharge (T2) a median of 14 (range 7–89) days from HSCT. Time-point 3 data were collected approximately six weeks from discharge or a median of 56 (range 49–104) days from HSCT.
Table 1.
Sample Demographic and Clinical Characteristics
| Characteristic | Caregiver | Patient |
|---|---|---|
| N= 91 | N=65 | |
| Age (Mean, Standard Deviation) | 52.3 (13.5) | 47.4 (14.3) |
| Gender | n (%) | n (%) |
| Male | 23 (25.3) | 41 (63.1) |
| Female | 68 (74.7) | 24 (36.9) |
| Race | ||
| White | 67 (73.6) | 45 (69.2) |
| Married | 77 (84.6) | 46 (70.8) |
| Educationa | ||
| <High school | 2 (2.2) | 3 (4.7) |
| High school graduate | 11 (12.2) | 10 (15.7) |
| Some college, no degree | 33 (36.2) | 18 (28.0) |
| Bachelor's Degree | 23 (25.2) | 14 (21.9) |
| Graduate/professional degree | 22 (24.2) | 19 (29.7) |
| Caregiver Team (>1 cg/pt) | 44 (48.4) | ----- |
| Chronic health conditions | ||
| ≥ 1 condition self-reported | 54 (59.3) | -- |
| Overweight (BMIb 25 – 29.9) | 31 (34.1) | -- |
| Obese (BMIb ≥30) | 27 (29.7) | -- |
| Hypertension | 19 (20.9) | -- |
| High cholesterol | 17 (18.7) | -- |
| Baseline ECOG | ||
| 0 | 91(100) | 25 (38.5) |
| 1 | -- | 38 (58.5) |
| 2 | -- | 2 (3.0) |
| Primary Disease | ||
| Lymphoma/MM | -- | 30 (46.2) |
| Non-malignant disease | -- | 9 (13.8) |
| CLL/CML | -- | 10 (15.4) |
| ALL/AM L | -- | 6 (9.2) |
| MDS | -- | 5 (7.7) |
| Solid tumor | -- | 4 (6.2) |
| CML & Hodgkin's | -- | 1 (1.5) |
| Stem cell sourcea | ||
| Peripheral blood | -- | 62 (96.9) |
| Cord | -- | 2 (3.1) |
| HLA disparity/donor | ||
| HLA-well or partially matched related | -- | 38 (59.4) |
| HLA-well or partially matched unrelated | -- | 25 (39.1) |
| HLA-mismatched related | -- | 1 (1.5) |
Note: MM= Multiple Myeloma, CLL = Chronic Lymphocytic Leukemia, AML = Acute Myeloid Leukemia, MDS = Myelodysplastic Syndrome, CML = Chronic Myelogenous Leukemia, ALL = Acute Lymphoblastic Leukemia, ECOG = Eastern Cooperative Oncology Group, HLA= Human Leukocyte Antigen, BMI = Body Mass Index
N = 64 patients
Caregivers were primarily female (74.7%) while patients were primarily male (63.1%). Approximately one-half of the caregivers served as sole caregiver (n=47, 57.6%) while the other one-half identified themselves as one of a predetermined team (n=44, 48.4%). Overall, the majority of all subjects were white and married with at least some college education. Although caregivers had an excellent performance status (ECOG 0 = 100%) at baseline, more than one-half of caregivers reported a least one chronic condition (59.3%) and had a BMI that classified them as either overweight (34.1%) or obese (29.7%).
Relationship among DT, BSI-18, and MFSI-SF
Descriptive statistics for all measures are presented in Table 2. The average DT score of caregivers ranged from 3.8 (SD±2.8) to 4.7 (SD±2.6), while for patients the average ranged from 3.5 (SD±2.7) to 4.2 (SD±2.6). The highest levels of distress occurred pre-HSCT for both caregivers and patients with 47 (60.3%) caregivers and 32 (51.6%) patients reporting DT score ≥ 4 and 40 (44%) caregivers and 26 (40%) patients reporting DT score ≥ 5. Using the BSI-18 standardized criteria, ten (11.1%) caregivers and nine (13.6%) patients were experiencing clinically meaningful distress pre-HSCT.
Table 2.
Descriptive Statistics for Measures
| Scale | Caregivers | Patients | ||
|---|---|---|---|---|
| Min-Max | Mean (SD±) | Min-Max | Mean (SD±) | |
| Pre-Transplant (cg n=91; pt n=65) | ||||
| BSI-18 GSI | 35–72 | 50.2 (9.6) | 35–74 | 52.0 (8.5) |
| MFSI Total | −18–+59 | 8.3 (17.7)1 | −19–+50 | 11.9 (16.5)2 |
| Distress Thermometer | 0–10 | 4.7 (2.6)3 | 0–10 | 4.2 (2.6)4 |
| DT problems (number) | 0–19 | 5.8 (4.8) | 1–17 | 7.7 (4.5) |
| Discharge (cg n=60; pt n=46) | ||||
| BSI-18 GSI | 35–71 | 48.3 (9.6)4 | 35–67 | 51.2(8.8) |
| MFSI Total | −24–+60 | 5.6 (15.6)4 | −24–+47 | 11.2 (17.3)1 |
| Distress Thermometer | 0–9 | 4.0 (2.5)5 | 0–10 | 4.1 (2.6)6 |
| DT problems (number) | 0–16 | 5.0 (4.1)2 | 0–31 | 7.4 (4.5)6 |
| Six weeks post discharge (cg n=55; pt n=40) | ||||
| BSI-18 GSI | 35–63 | 46.1 (8.8) | 35–65 | 48.6 (8.6) |
| MFSI Total | −24–+46 | 2.2 (16.8) | −24–+41 | 9.7 (17.7)2 |
| Distress Thermometer | 0–8 | 3.8 (2.8)4 | 0–9 | 3.5 (2.7) |
| DT problems (number) | 0–15 | 4.4 (4.2) | 0–35 | 7.24 (6.5) |
Note:
n=2 missing data
n=1 missing data
n=13 missing data
n=3 missing data
n=7 missing data
n=4 missing data
cg = caregiver, pt=patient, DT = Distress Thermometer (range 0–10), BSI= Brief Symptom Inventory (range 35–81), MFSI= Multidimensional Fatigue Symptom Inventory (range −24 – +96), DT problems (range 0–36)
Construct validity was supported by significant correlations (p<0.001) of the DT with the BSI-18 GSI and subscale scores for both caregivers and patients (Table 3). The relationship was strongest with the BSI-18 GSI and the Anxiety subscales in both groups and weaker relative to the Depression and Somatization subscales. When examining individual time-points, among patients the DT correlates significantly with each subscale of the BSI-18 with the exception of the Depression subscale at discharge. The DT also correlates with each subscale at each time for caregivers with the exception of the Somatization subscale at discharge and time point 3.
Table 3.
Correlation of Distress Thermometer (DT) with Scale Scores at each Time Point for Patients and Caregivers.
| Scale | Caregiversa | Patientsa | ||||||
|---|---|---|---|---|---|---|---|---|
| T1 n=78 | T2 n=53 | T3 n=52 | All Time Points n=175 | T1 n=62 | T2 n=42 | T3 n=37 | All Time Points n=141 | |
| BSI-18 GSI | .52** | .50** | .50** | .52** | .55** | .40** | .54** | .51** |
| Anxiety | .46** | .55** | .38** | .47** | .43** | .47** | .43** | .45** |
| Depression | .48** | .34* | .50** | .46** | .42** | .19 | .55** | .39** |
| Somatization | .27* | .26 | .23 | .27** | .47** | .34* | .43** | .43** |
| MFSI Total | .51** | .40** | .58** | .51** | .43** | .63** | .69** | .56** |
| Emotional | .60** | .58** | .64** | .62** | .46** | .48** | .57** | .48** |
| General | .41** | .17 | .38** | .34** | .27* | .35* | .44** | .35** |
| Mental | .35** | .17 | .39** | .32** | .13 | .34* | .55** | .30** |
| Physical | .17 | .28* | .25 | .23** | .39** | .59** | .50** | .47** |
| Vigor | −.41** | −.38* | −.52** | −.45** | −.30* | −.64** | −.58** | −.48** |
Note: BSI= Brief Symptom Inventory, MFSI= Multidimensional Fatigue Symptom Inventory, T1= Pre-HSCT, T2 = HSCT Discharge, T3 = 6 weeks following HSCT discharge
p<0.05
p<0.001
Sample size based on complete data for DT and BSI or MFSI respectively.
Construct and discriminant validity were supported by significant correlations (p<0.001) with the DT and the MFSI-SF total score and subscale scores for both caregivers and patients (Table 3). The relationships were strongest with the total score, Emotional and Vigor (discriminant) subscales in both groups, and weaker relative to General, Mental (cognitive), and Physical (caregivers only) fatigue subscales. When examining individual time-points, among patients, the DT correlated with each subscale except for the Mental subscale pre-HSCT. Among caregivers, the General and Mental subscales did not correlate with DT at discharge, and the Physical subscale did not correlate pre-HSCT or six weeks post-HSCT.
Relationship with DT and the problem list
Overall, the number of problems reported strongly correlated (p<0.001) with the DT score in both groups ranging from r =0.38 to 0.69 (Table 4). Caregivers and patients reporting a higher number of problems had a greater level of distress. The strongest relationships were with the Emotional and Physical problems in both groups. The Practical and Family problems were inconsistently significant likely because of variation in the number of problems reported across the transplant trajectory.
Table 4.
Correlation between DT score and Number of Problems Identified
| Caregiversa | Patientsa | |||||
|---|---|---|---|---|---|---|
| T1 n=78 | T2 n=53 | T3 n=52 | T1 n=62 | T2 n=42 | T3 n=37 | |
| Total Number of Problems | .639** | .468** | .643** | .378** | .690** | .683** |
| Practical | .519** | .189 | .525** | .042 | .321* | .408* |
| Family | .230* | .149 | .237 | .019 | .226 | .299 |
| Physical | .476** | .265 | .421** | .262* | .597** | .573** |
| Emotional | .628** | .625** | .636** | .519** | .646** | .733** |
p<0.05
p<0.001
Sample size based on complete data for both the `thermometer' and the problem list of the DT measure.
Cutoff scores for DT
At baseline, the prevalence of psychological distress by the BSI-18 criteria for caregivers (n=10; 11%) and patients (n=9; 13.6%) was low. Given the low numbers, the analysis to determine a cut point for the DT in this population was exploratory. Using ROC, the AUC applying the BSI-18 criteria for caregivers is .61(SD±.08, p=.275) and for patients is .85 (SD+.05, p=.001). Table 5 indicates the sensitivity and specificity of a DT cut point of 4 and 5 relative to the BSI-18 criteria. Although sensitivity was high for both DT cut points, especially for patients, the specificity was less than desired. These findings were validated using both parametric and nonparametric comparisons. The mean DT score for patients classified as psychologically distressed on the BSI-18 was significantly higher than the mean score of those not psychologically distressed (7.0 vs. 3.7, t=3.84, p<.001). The Mann-Whitney U test (p=.001) and the median test (p=.001) indicated similar results. In contrast, the caregivers' mean DT scores did not differ significantly between the two groups (5.6 vs. 4.6, t=1.18, p=.24). According to the Mann-Whitney U test, the distribution of scores did not differ between the two groups (p=.27) and the medians did not differ (p=.56).
Table 5.
Cut-off on the Baseline DT (cg n=78; pt n=62) on Corresponding Sensitivity and Specificity Rates
| Cut-off | Caregivers | Patients | ||
|---|---|---|---|---|
| Sensitivity | Specificity | Sensitivity | Specificity | |
| 4 | .80 | .426 | 1.00 | .566 |
| 5 | .70 | .515 | 1.00 | .679 |
Discussion
The findings of this study are similar to a previous study in cancer patients [28] and caregivers [15] and support the validity of the DT for the screening of distress in HSCT caregivers and patients. Distress is defined as a multi-factorial unpleasant emotional experience of psychological, social and spiritual nature that can range from common normal feelings to those that become disabling such as depression and anxiety[25]. Although the strongest relationships for the DT were with scales that reflect the psychological/emotional dimensions of distress, its relationships with fatigue, especially physical fatigue in HSCT patients, suggests a global definition of distress is appropriate for the population experiencing an incredibly intense and complex treatment. The association of cancer related fatigue with psychological distress has been well documented and supports the findings of this study [37].
Relative to caregivers, the DT had poor diagnostic utility with no specific score suggesting a clinically meaningful level of psychological distress. This finding is in contrast to the only other study screening cancer caregivers for distress where the authors concluded that a DT score of 4 or 5 may be appropriate depending on the goals of screening [15]. For both DT scores, the sensitivity was ≥ .70 and specificity was approximately .60 or greater suggesting reasonable accuracy according to the HADS. Differences between the studies create some explanations for the difference in findings, specifically the larger number of caregivers with clinically meaningful distress (anxiety n=51; depression n=34) based on the HADS as compared to those identified using the BSI-18. Although the diagnostic utility of the DT for HSCT caregivers may be limited based on our findings, continuing to understand the factors associated with distress can guide practice for this understudied caregiver population.
Accurate screening for clinically meaningful psychological distress in patients was more definitive. Our findings suggest a DT cut score of 5 generates the best balance between ruling in or out significant distress for HSCT patients. This finding supports previous research in cancer patients [27, 30, 38], but differs from others [29], where the sample also was preparing for HSCT. Clinical practice, however is not an exact science. Therefore, the level of distress reported by an individual should be considered in the context of the overall experience with perspectives across disciplines. The inclusion of the psychological and social aspects of cancer treatment are less often addressed by providers [39], and administering the DT, which has been shown to be feasible in HSCT patients [21], could be a step towards addressing this gap in practice.
Beyond screening for diagnostic distress, the DT allows for the identification of problems that contribute to the distress experience and should trigger an expanded assessment. The findings from this study are similar to a previous study suggesting that more problems are associated with higher levels of distress [40]. Specifically, our findings suggest that HSCT caregiver distress increases when practical problems are prevalent pre-HSCT and during the outpatient phase post-HSCT. Physical and emotional problems seem to affect both caregivers and patients similarly; however, there is a significant gap in the provision of health care services during transplantation for caregivers. The physical experience of the patient is routinely assessed as a component of their cancer care, but there is no formal approach established to address or intervene specifically addressing physical or emotional concerns of caregivers. The presence of family problems only reached significance pre-HSCT for caregivers which may be due to the few number of items in this category. In addition, because spiritual problems are only reported as one item, a possible relationship between the DT and this item was not explored.
The management of problems reported by allogeneic HSCT caregivers and patients would benefit from inter-disciplinary collaboration [41]. The absolute presence of a problem cannot alone provide enough information to guide the level of service required and should be considered in the context of the treatment and their individual history. For example, a moderate level of distress that is associated with practical and emotional problems could be explored and managed by a social worker. In contrast, a high level of distress in the context of a history of psychiatric illness and prominent current emotional problems should be referred to a mental health specialist such as a psychologist or a psychiatrist. Current literature provides little to guide practice for cancer caregivers [42], specifically those caring for patients receiving allogeneic HSCT. Meta-analyses examining the effect of various interventions (including behavioral techniques) intended to treat the psychosocial problems of cancer patients, conclude significant beneficial effects [43–45]. In addition to improvements in psychological distress, beneficial effects on measures of treatment- and disease-related symptoms were also documented [43, 44]. More recent studies with cancer patients and their family continue to support the beneficial effect of interventions based on cognitive-behavioral therapy [46–49] with approaches being explored with allogeneic HSCT caregivers and patients [50].
Communication with a provider can be enhanced with the inclusion of patient reported outcome data such as the DT [51]. HSCT patients may not independently report psychosocial distress to their providers because of feared stigma, being identified as a burden to busy clinical providers, or because they perceive that this would be distracting their physician from curative efforts. They may also feel that divulging issues of psychological distress are a sign of weakness or should be withheld because they are inevitable [21]. These issues are likely to be further amplified in these patients' caregivers who may perceive their own distress as something that must be dealt with in isolation in order to keep the provider team focused on the patient. Somewhat evident in this study, despite a number of problems that can be reported by caregivers, they may be understating their distress, less willing to conclude (scale of 0 – 10) that they are `distressed', since the accountability for overseeing the concerns of the allogeneic HSCT, falls to them. Therefore, incorporating a simple self-report measure of problems, not solely a single item determination of distress, may serve to expand the traditional biomedical assessment in this population and more fully inform interventions or potential referrals on their behalf.
Limitations of this work revolve around the selection of only one measure as a standard for psychological distress (BSI-18) and the small sample size. The limited sample size prevents meaningful sub-analysis which would expand our understanding of other variables such as the role of gender. Although a strength of this study is the inclusion of additional measures to support a more global definition of distress, overall number of individuals determined to be psychologically distressed was low. This may have affected our ability to see a more definitive result relative to the caregivers, where over 50% at each time point reported a DT score ≥ 4.
The major issue that still needs attention is how screening for distress or any other patient reported outcome will be translated into clinical practice. A major obstacle in the clinical setting is the challenge of real-time questionnaire completion, scoring and interpretation. Computerized systems are emerging for cancer [52] as well as HSCT patients [53]. Resources, human and fiscal, to permit the systematic collection of patient reported outcomes are essential to the translation of screening measures. Translating screening measures based on systematic collection of PROs into meaningful, tailored clinical practice will require continued human and fiscal resource allocation.
Acknowledgments
The authors thank the following individuals for their assistance in recruitment of subjects: Laura Musse, Bazetta (Zetta) Blacklock-Schuver, Caroline Stewart, Wynona (Nona) Coles, Beth Link and Rose Goodwin. The authors are grateful to the following physicians for supporting this study: Drs John Barrett, Richard Childs, Daniel Fowler, Michael Bishop, John Tisdale, Elizabeth Kang, Matthew Hsieh, and Courtney Fitzhugh. In addition, the authors are appreciative to the nursing and support staff members of 3NE Nursing Unit, 3SE Day Hospital, and OP 7 & OP12 clinics. We also acknowledge funding by the Intramural Research Program of the NIH, Clinical Center.
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