lung cancer rehabilitation

PA P E R

Cancer‐and‐treatment–specific distress and its impact on posttraumatic stress in patients undergoing allogeneic hematopoietic stem cell transplantation (HSCT)

Katharina Kuba1 | Peter Esser1 | Angela Scherwath2 | Lena Schirmer2 |

Frank Schulz‐Kindermann2 | Andreas Dinkel3 | Friedrich Balck4 | Uwe Koch2 |

Nicolaus Kröger5 | Heide Götze1 | Anja Mehnert1,2

1Department of Medical Psychology and

Medical Sociology, University Medical Center

Leipzig, Leipzig, Germany

2Department and Outpatient Clinic of Medical

Psychology, University Medical Center

Hamburg‐Eppendorf, Hamburg, Germany 3Department of Psychosomatic Medicine and

Psychotherapy, Klinikum rechts der Isar,

Technical University Munich, Munich,

Germany

4Department of Medical Psychology and

Medical Sociology, University Hospital Carl

Gustav Carus, Technical University of

Dresden, Dresden, Germany

5Department of Stem Cell Transplantation,

University Medical Center Hamburg‐ Eppendorf, Hamburg, Germany

Correspondence

Katharina Kuba, University Medical Center

Leipzig, Philipp‐Rosenthal‐Strasse 55, 04103 Leipzig, Germany.

Email: [email protected]‐leipzig.de

Abstract

Background In this prospective multicenter study, we investigated cancer‐and‐treatment–

specific distress (CTXD) and its impact on symptoms of posttraumatic stress disorder (PTSD) in

patients undergoing allogeneic hematopoietic stem cell transplantation (HSCT).

Methods Patients were consulted before (T0, N = 239), 3 (T1, N = 150), and 12 months (T2,

N = 102) after HSCT. Medical (eg, diagnosis and pretreatment) and demographic information,

CTXD and PTSD (PCL‐C) were assessed.

Results Random intercept models revealed that the sum score of CTXD was highest pre‐

HSCT (T0), decreased by T1 (γ = −.18, 95% CI [−.26/−.09]), and by T2 (γ = −.10, 95% CI [−.20/

−.00]). Uncertainty, family strain, and health burden were rated most distressing during HSCT.

Uncertainty and family strain decreased from T0 to T1 (γ = −.30, 95% CI [−.42/−.17]; γ = −.10,

95% CI [−.20/−.00]) and health burden fromT1 toT2 (γ = −.21, 95% CI [−.36/.05]). Women were

more likely to report uncertainty (γ = .38, 95% CI [.19/.58]), family strain (γ = .38, 95% CI [.19/

.58]), and concerns regarding appearance and sexuality (γ = .31, 95% CI [.14/.47]) than men.

Uncertainty (γ = .18, 95% CI [.12/.24]), appearance and sexuality (γ = .09, 95% CI [.01/.16]),

and health burden (γ = .21, 95% CI [.14/.27]) emerged as predictors of PTSD symptomatology

across the 3 assessment points.

Conclusions Our data provide first evidence regarding the course of 6 dimensions of CTXD

during HSCT and their impact on PTSD symptomatology. Specifically, results emphasize the

major burden of uncertainty pre‐HSCT and the impact of uncertainty and concerns regarding

appearance and sexuality on PTSD symptomatology.

KEYWORDS

cancer, cancer‐and‐treatment–specific distress, hematopoietic stem cell transplantation, oncology,

posttraumatic stress symptoms

1 | BACKGROUND

Allogeneic hematopoietic stem cell transplantation (HSCT) has become

a well‐established treatment for patients with hematologic diseases.1

Nevertheless, it brings along intensive threat for patients as it is

associated with high levels of uncertainty, morbidity, and mortality.2

In addition to the psychological distress accompanying cancer and its

treatment, patients undergoing HSCT are confronted with extreme

conditions including a long period of isolation,3 high rate of potential

complications,4 and tentative chances of survival.2 As a result, a signif-

icant number of patients develop depression, anxiety,5,6 or posttrau-

matic stress disorder (PTSD).7

Few studies have investigated psychological distress in the shorter

term following HSCT (for review, see the work of Mosher et al.8). Most

Received: 5 January 2016 Revised: 30 August 2016 Accepted: 6 October 2016

DOI: 10.1002/pon.4295

1164 Copyright © 2016 John Wiley & Sons, Ltd. Psycho‐Oncology. 2017;26:1164–1171.wileyonlinelibrary.com/journal/pon

of these studies suggest that HSCT patients experience elevated levels

of anxiety and depression in the phase before and up to 2 weeks after

transplantation.9–11 Remarkably, most studies operationalized psycho-

logical distress as depressive or anxious symptomatology, which might

not sufficiently recognize the specific distress experienced by cancer

patients.8,12,13 Dealing with cancer‐and‐treatment–specific distressing

(CTXD) factors like uncertainty about the treatment outcomes or

bodily and social role changes does not necessarily comply with items

for assessing depression or anxiety, resulting in low psychiatric scores

even though patients are highly distressed.8,12,14 Following this objec-

tion, to our knowledge, 3 studies have investigated disease‐specific

distress after HSCT.10,15,16 Similarly to the course of depression and

anxiety, they found that distress was highest before transplantation

and then decreased during 3 months,15 12 months,10 or 2 years.16

The study by Gruber et al16 investigated different dimensions of dis-

tress, which were differently rated and had varying courses, which

emphasizes the importance of a multidimensional investigation of dis-

tress. The literature on cancer‐specific distress as well as depression

and anxiety suggests that women are more likely to be distressed fol-

lowing HSCT than men.9,10 Inconclusive results exist regarding marital

status and education as predictors of distress.9,10 Furthermore,

medical risk factors including tumor entity, time since diagnosis, and

graft‐versus‐host disease (GvHD) do not seem to predict psychological

distress in HSCT patients.9,10

Considering the high range of potential distressing factors

associated with HSCT, it is not surprising that some HSCT patients

experience posttraumatic stress symptoms (PTSS) that DSM‐IV diag-

nostic criteria characterize as heightened arousal, intrusive thoughts

of the traumatic event, and avoidance of reminders of the event.17

Previous studies reported that 11% to 29% of patients experience

severe PTSS within 1 year following HSCT.18,19 Of the few studies

dealing with cancer‐related PTSS and specifically after HSCT, none

addresses the question what kind of distress is most burdensome

and predictive of PTSS.

Brewin et al20 argued that the uncertain prognosis in cancer plays

an important role in developing PTSS, which fits into considerations

regarding the network model of PTSD applied to cancer: Kangas et

al21 noted that PTSS could develop when information in the fear net-

work cannot be integrated in existing memory structures. Specifically,

while the diagnosis of cancer might challenge the idea of one's safety,

the uncertain prognosis exacerbates that corrective information about

one's well‐being is integrated into the safety network.20 Furthermore,

she argued that being confronted with severe stressors for a prolonged

period of time promotes development of PTSS. Therefore, distress

arising from feelings of uncertainty regarding treatment outcomes as

well as health burden may be related to experiencing PTSS.The present

study aims to assess the impact of CTXD experienced during the

course of HSCT on PTSS. Based on the reviewed literature, we

hypothesize the following:

1. CTXD peaks at admission for HSCT (T0) and declines until 3 (T1)

and 12 months (T2) after HSCT.

2. Women report significantly higher levels of CTXD than men.

3. Uncertainty and health burden are most predictive of PTSS during

the first year after HSCT.

2 | METHODS

2.1 | Sample and procedure

Our research was part of a prospective multicenter trial investigating

cognitive functioning in cancer patients treated with allogeneic

HSCT.22 We recruited patients at 6 German university medical centers

and assessed them before conditioning for HSCT (T0), 100 ± 20 days

(T1) after HSCT, which is usually the end of the immediate and close

after care phase, and 12 ± 1 months after allogeneic HSCT (T2). Data

were collected over a 3‐year period from June 2005 to July 2008.

Eligible patients were ≥18 years of age, diagnosed with a hematologic

disease, and scheduled for allogeneic HSCT. Study approval was

obtained from the local ethics committees or the institutional review

boards. Patients were contacted during an outpatient visit, by phone

or at admission. If they agreed to participate, they completed a set of

standardized self‐report questionnaires mostly at home. For the

follow‐up measurements, questionnaires were sent by mail, and partic-

ipants brought them to the scheduled follow‐up appointment at their

transplantation center.22

2.2 | Measures

Sociodemographic information was obtained via patients' self‐report

questionnaire, and medical information was collected during baseline

and follow‐up measurements (for variables, see Table 1).

We measured CTXD experienced during the course of HSCT using

the German version of the CTXD scale.23 The CTXD scale consists of

32 items that are rated on a 4‐point Likert scale from 0 “no distress”

to 3 “severe distress.” The items originally covered 7 dimensions (sub-

scales: uncertainty, family strain, appearance and sexuality, health bur-

den, managing medical system, finances, and acute symptoms before

treatment). However, because the dimension of acute symptoms

before treatment does not apply to follow‐up assessment, only the

remaining 6 dimensions that could be administered repeatedly was

part of the analysis. In patient groups receiving HSCT, the CTXD has

shown satisfying to excellent reliabilities with a total Cronbach's alpha

of .93.23 Across the different time points of our study, Cronbach's

alpha of the total score ranged between .94 and .95. Cronbach's alpha

for the subscales was between .83 and .87 (uncertainty), .77 and .81

(family strain), .68 and .80 (appearance and sexuality), .79 and .85

(health burden), .62 and .74 (managing the medical system), and .60

and .75 (financial burden).

We used the German version of the PTSD Checklist–Civilian

Version (PCL‐C24) to assess PTSS at all 3 time points. The PCL‐C is a

17‐item self‐report questionnaire reflecting DSM‐IV symptoms of

PTSD. Participants rated on a 5‐point Likert scale ranging from 1

“not at all” to 5 “extremely” the extent to which they were affected

during the past month by symptoms of PTSD. International studies

have shown good psychometric properties for the total score with

Cronbach's alpha of .94.25 Test‐retest reliabilities have been reported

as .96 at 2 to 3 days and .88 at 1 week.25,26 The PCL‐C sum score

correlates strongly (r = .93) with the Clinician‐administered PTSD

Scale, which indicates high convergent validity.25 In our sample,

Cronbach's alpha ranged from .83 to .86 across the 3 time points.

KUBA ET AL. 1165

2.3 | Statistical analysis

First, demographic and medical variables at baseline were reported.

Random intercept models with time as fixed factor were computed to

analyze fluctuations in CTXD. Assessment days (level 1) were nested

within individuals (level 2). We tested potential risk factors for

experiencing CTXD by including a set of control variables in the random

intercept models: age, gender, being in a relationship, education (< or

>9 years), cancer diagnosis (acutemyeloid leukemia vs others), pretreat-

ment for the current hematological disease prior to (conditioning for)

HSCT, chronic and acute GvHD, and time since diagnosis. Age was

grand‐mean centered, so that respective effects need to be interpreted

relative to the sample mean. Analogously, we analyzed the impact of

CTXD dimensions on PTSS in one random intercept model. Model fit

of the random intercept models was assessed with the R2 for general-

ized linear mixed models.27 Additionally, we tested the impact of CTXD

TABLE 1 Sociodemographic and medical characteristics, at baseline and 1 year after allogeneic HSCT

T0 (n = 239) T2 (n = 102) % (n) % (n)

Sociodemographic

Female 38% (91) 39% (40)

Age, mean (SD) 50.4 (12) 47.4 (12)

Partnership 85% (185) 77% (72)

>9 years of education 65.7 (155) 73.5 (75)

Diagnosis

Acute myeloid leukemia 44% (104) 41% (42)

Myelodysplastic syndromes 14% (33) 19% (19)

Multiple myeloma 12% (29) 9% (9)

Osteomyelofibrosis 9% (21) 9% (9)

Non‐Hodgkin 7% (16) 7% (7)

Chronic myeloid leukemia 6% (15) 7% (7)

Othersa 9% (21) 8% (9)

Pretreatment

Any pretreatmentb 80% (192) 76% (77)

Chemotherapy 70% (168) 64% (65)

Autologous HSCT 21% (50) 19% (19)

Cell reductive therapy 18% (44) 17% (17)

Total body irradiation 3% (7) 2% (2)

Current treatment

Conditioning

Reduced 59% (60)

Conventional 41% (42)

Total body irradiation

No 70% (71)

Yes 30% (31)

Transplantation type

Bone marrow transplant 5% (5)

Peripheral blood stem cell transplant 95% (97)

HLA compatibility

Matched 80% (82)

Mismatched 20% (20)

Donor

Related 32% (33)

Unrelated 68% (69)

Complications

Graft‐versus‐host disease

Acute 56% (57)

Chronic 59% (60)

Abbreviations: HLA, human leukocyte antigen; HSCT, hematopoietic stem cell transplantation. aSevere aplastic anemia, chronic lymphatic leukemia, chronic myelomonocytic leukemia, polycythemia rubra vera, morbus Hodgkin, and prolymphocytic leukemia. bAny pretreatment for current hematological disease, excluding conditioning.

1166 KUBA ET AL.

at pre‐HSCT on PTSS 3 and 12 months later. The freeware statistical

program R (version 3.2.2; The R Foundation for Statistical Computing,

2010) was used for all analyses.

3 | RESULTS

3.1 | Sample characteristics

Patient‐, cancer‐, and treatment‐related characteristics at baseline and

T2 are summarized in Table 1. Out of 394 eligible patients, 239

patients (61%) responded and were included at baseline (pre‐HSCT).

Responders (N = 239) did not differ from nonresponders (N = 155) in

gender and diagnosis (P ≥ .32). Sixty‐two percent (n = 150) of the

responders at baseline participated 3 months after HSCT and 43%

(n = 102) 12 months after HSCT. Among other reasons, dropouts at

T1 or T2 were due to psychological problems (n = 13), being too ill

(n = 31), or death (n = 49). Patients who dropped out at T1 or T2

were significantly older, less educated, and less often conditioned

with total body irradiation. Regarding the variables of CTXD and

PTSS, no differences were found at baseline between dropouts and

respondents.

3.2 | Preliminary analysis

The intraclass correlation coefficients for the models of CTXD ranged

between 46% (health burden) and 60% (finances), indicating that mul-

tilevel modeling was an appropriate procedure for analyzing the data.28

Residuals of the models were distributed approximately normal, with

skewness lower than |2.1| and kurtosis lower than |7.1|.29 Between

0% and 4.7% of the raw data of the scales of CTXD and PCL‐C were

missing. A total of 8.8% of the participants did not provide information

regarding their relationship and 1.3% regarding the highest education,

which were deleted listwise for the analyses. All missing data were

assumed to be missing at random.

3.3 | Course of cancer‐and‐treatment–specific distress

The random intercept model revealed that the sum score for CTXD

was highest pre‐HSCT (M = 1.13, SD = .59) and decreased until

3 months (M = .92, SD = .55, γ = −.18, P = .00, 95% CI [−.26/−.09])

and again until 12 months after HSCT (M = .82, SD = .54, γ = −.10,

P = .04, 95% CI [−.20/−.00]). Results of the random intercept models

for the 6 dimensions of CTXD and gender are displayed inTable 2 and

Figure 1. Uncertainty was rated highest at pre‐HSCT and decreased

significantly until 3 months after HSCT. Similarly, family strain

decreased from pre‐HSCT to 3 months later, while health burden

decreased from 3 to 12 months after HSCT. Concerns regarding

appearance and sexuality as well as managing the medical system

and financial burden did not change over time. Among the 6 distress

dimensions, uncertainty and health burden were rated most distressing

at all measurement points.

3.4 | Risk factors of cancer‐and‐treatment–specific distress

The multilevel model in which the medical and demographic factors

were included as control variables explained approximately 60% of

the total variance in the 6 dimensions (conditional R2GLMM). About

10% (marginal R2GLMM) were explained by the fixed factors (time, med-

ical, and demographic variables) alone, subtracting the effect of the

random intercept. Results of the full models of the 6 distress dimen-

sions are displayed in Table 2.

Women were more likely to report cancer‐specific distress in

terms of total distress (γ = .23, P < .00, 95% CI [.09/.38]). Being female

significantly increased the probability of experiencing uncertainty, dis-

tress regarding appearance and sexuality, and family strain over the

course of 12 months past HSCT. Furthermore, being in a relationship

was associated with higher distress regarding appearance and sexual-

ity. Patients with treatment before HSCT had less total distress

(γ = −.17, P = .06, 95% CI [−.34/.01]), less concerns about appearance

and sexuality, less health burden, and distress regarding managing the

medical system than patients without pretreatment. Education, cancer

diagnosis, time since diagnosis, and GvHD did not emerge as signifi-

cant predictors of any of the distress scales, which is why they were

removed from the models.

3.5 | The impact of distress dimensions on PTSS

As displayed in Table 3, the random intercept model with fixed time

revealed that none of the medical and demographic variables signifi-

cantly predicted PTSS during the course of HSCT. A trend was found

for age, with older patients being slightly more prone to show PTSS

than younger patients. Gender and pretreatment were kept in the

model because of their association with the distress scales. Cancer‐

and‐treatment–specific distress regarding uncertainty, appearance

and sexuality, health burden, and managing the medical system had a

positive association with PTSS during 12 months following HSCT.

Concerns about appearance and sexuality before HSCT predicted

PTSS 3 (β = .40, P < .00, 95% CI [.25/.54], R2 = 17%) and 12 months

later (β = .18, P = .03, 95% CI [.01/.35], R2 = 29%), an effect that

remained when controlling for gender. Furthermore, distress regarding

managing the medical system before HSCT was a significant predictor

of PTSS 12 months after HSCT (β = .28, P = .01, 95% CI [.09/.47],

R2 = 29%).

4 | DISCUSSION

4.1 | Course of cancer‐and‐treatment–specific distress dimensions

Patients undergoing allogeneic HSCT are subject to a broad range of

stressors and experience CTXD. As hypothesized, distress among the

patients was highest before HSCT and improved from 3 to 12 months

after HSCT. These results suggest that patients are more impacted by

fear of the impending treatment than by the treatment itself, which is

illustrated by the high degree of uncertainty pre‐HSCT. The recovery

from CTXD during 1 year is similar to earlier studies.9,10,30 However,

KUBA ET AL. 1167

while in our study the biggest drop was from pre‐HSCT to 3 months

later, Syrjala et al10 found distress to stay high until 90 days past HSCT

and only then to steadily decrease.

Even though earlier studies have used the CTXD scale,10,15,31

to our knowledge, this is the first study reporting the different

dimensions of CTXD. Uncertainty, family strain, and health burden

were rated most distressing and all significantly dropped during

the course of HSCT. The elevated levels of uncertainty may be

due to the complex and hazardous nature of allogeneic HSCT.

Patients have existential health concerns and suffer from the uncer-

tain outcome of the invasive treatment. Another explanation may

be that 3 months after HSCT, patients have usually been exposed

to hospitalization and complications and only patients that have sur-

vived and are in reasonably good health completed the question-

naire at T1. This in turn could have led to low uncertainty and

health burden in the remaining sample. Appearance and sexuality,

managing the medical system, and financial burden play a subordi-

nate role in this medical situation.

As formulated in hypothesis 2, being female poses a major risk fac-

tor for experiencing distress, which is in line with earlier research.9,10

Furthermore, women are especially concerned about family as well

as appearance and sexuality. It seems plausible that women, who are

more often the main caregivers in families than men,32 are more con-

cerned about changes in the family. Notably, resembling our findings,

it has been shown that women report more sexual concerns and expe-

rience sexual difficulties than men during 3 years following HSCT.33

Having received treatment before HSCT puts patients at lower

risk to experience distress, which resembles earlier studies.10 It seems

that experience with cancer treatment alleviates concerns regarding

management of the medical system and regarding appearance and

sexuality.

4.2 | Impact of distress dimensions on PTSD

Our results show that CTXD is strongly associated with symptoms of

PTSD. Adding to previous findings,31,34 our results lend further

TABLE 2 Summary of results from multilevel model analyses for the 6 full models of the 6 distress dimensions predicted by time, medical, and demographic variables

Uncertainty Family Strain Appearance and Sexuality

Coeff Sign 95% CI Coeff Sign 95% CI Coeff Sign 95% CI

Person‐level (level 2)a

Age .00 .76 .00/.00 .00 .16 .00/.01 .00 .77 .00/.01

Genderb .38 .00 .19/.58 .21 .02 .04/.38 .31 .00 .14/.47

Partnership .15 .28 −.12/.43 .19 .13 −.05/.43 .25 .04 .02/.47

Pretreatmentc −.06 .63 −.29/.18 −.10 .36 −.31/.11 −.32 .00 −.52/−.12

Day‐level (level 1)d

Intercept .95 .00 .62/1.3 .75 .05 .46/1.04 .81 .00 .53/1.1

Pre vs 3 months post −.30 .00 −.42/−.17 −.31 .00 −.42/−.21 .03 .57 −.07/.13

Three vs 12 months post HSCT −.15 .05 −.29/.00 −.16 .01 −.28/−.03 −.07 .26 −.19/.05

R2GLMM(m) 10.62% 11.60% 10.55%

R2GLMM(c) 59.97% 61.73% 62.04%

AIC 989.92 879.29 824.80

Health Burden Medical System Financial Burden Coeff Sign 95% CI Coeff Sign 95% CI Coeff Sign 95% CI

Person‐level (level 2)a

Age .01 .11 .00/.01 .00 .33 .00/.00 −.01 .09 −.01/.00

Genderb .12 .19 −.06/.30 .13 .08 −.02/.27 .07 .43 −.11/.26

Partnership .01 .97 −.24/.25 .00 .98 −.20/.20 .18 .17 −.08/.44

Pretreatmentc −.30 .01 −.52/−.09 −.20 .02 −.38/−.03 −.01 .93 −.23/.22

Day‐level (level 1)d

Intercept 1.56 .00 1.25/1.86 .63 .00 .38/.88 .55 .00 .24/1.86

Pre vs 3 months post −.08 .20 −.21/.04 −.05 .35 −.15/.05 −.01 .83 −.11/.09

Three vs 12 months post HSCT −.21 .01 −.36/.05 −.06 .34 −.18/−.06 −.03 .60 −.15/.08

R2GLMM(m) 6.00% 3.57% 1.92%

R2GLMM(c) 46.73% 47.39% 66.80%

AIC 979.54 783.16 858.62

Abbreviations: AIC, Akaike information criterion; HSCT, hematopoietic stem cell transplantation.

Coeff = coefficient; sign = significance; CI = confidence interval. an = 218. b0 = male; 1 = female. cAny pretreatment for current hematological disease, excluding conditioning. 0 = no; 1 = yes. dn = 441‐443.

1168 KUBA ET AL.

support for the importance of assessing CTXD during HSCT and its

impact on undesired outcomes such as high symptom burden.

Among the distress dimensions, uncertainty, health burden,

and appearance and sexuality have the strongest impact on PTSS,

which confirms hypothesis 3 emphasizing the impact of uncertainty

and health burden on PTSS. In line with these findings, Mehnert and

Koch35 performed a study on PTSD in breast cancer patients and

found that uncertainty about the future was experienced as traumatic

by one‐third of the sample. Only receiving the breast cancer diagnosis

was more often experienced as traumatic by 42% of the sample. Our

findings support the notion that uncertainty plays an emerging role in

the development of PTSD symptomatology after cancer. Future

research should investigate this effect more closely.

Worries about appearance and sexuality at any time point seem to

pose a robust risk factor for exhibiting PTSS during the course of

HSCT. One earlier study working with long‐term survivors of non‐

Hodgkin's lymphoma found that concerns about appearance and

bodily changes are associated with heightened experience of PTSS.36

Relatedly, concerns regarding sexuality have been associated with

depression during the course of HSCT.33 Appearance and sexuality

seem to be a source for potential distress strongly influencing the psy-

chological well‐being of patients undergoing HSCT.

4.3 | Strengths and limitations

Our study has certain strengths including the relatively large and

homogeneous sample size, the longitudinal approach, and the use of

validated self‐report measures. However, distress and PTSS were

TABLE 3 Summary of results from multilevel model analyses for the 6 distress dimensions predicting PTSS

Coeff Sign 95% CI

Person‐level (level 2)a

Age .00 .06 −.01/.00

Gender b .07 .13 −.02/.17

Pretreatmentc −.04 .54 −.15/.07

Day‐level (level 1)d

Intercept 1.14 .00 1.00/1.27

Pre vs 3 months post .14 .00 .07/.21

Three vs 12 months post HSCT .04 .28 −.03/.11

Uncertainty .17 .00 .11/.24

Family strain .04 .33 −.04/.12

Appearance and sexuality .08 .04 .00/.15

Health burden .19 .00 .12/.26

Managing the medical system .12 .00 .04/.19

Financial burden .02 .57 −.05/.08

R2GLMM(m) 48.90%

R2GLMM(c) 75.36%

AIC 441.79

Abbreviations: AIC, Akaike information criterion; HSCT, hematopoietic stem cell transplantation; PTSS, posttraumatic stress symptom.

Coeff = coefficient; sign = significance; CI = confidence interval. an = 231. b0 = male; 1 = female. cAny pretreatment for current hematological disease, excluding conditioning. dn = 467.

FIGURE 1 The course of the 6 CTXD dimensions over 3 time points during HSCT for men and women with means and 95% confidence intervals. The scales range from 0 to 3. Numbers of participants for 3 time points: pre‐HSCT (N = 239), 3 months after HSCT (N = 150), and 12 months after HSCT (N = 102)

KUBA ET AL. 1169

assessed by self‐reports that might be biased by social desirability. Sec-

ond, we had a considerable dropout rate.

Our findings might be biased towards underestimating distress

and PTSS rates as well as the progress of recovery from pre‐HSCT to

3 and 12 months later because highly distressed patients dropped

out because of death, physical, or psychological problems.

Furthermore, the chosen self‐report measure of PTSS does not

allow for conclusions about a PTSD diagnosis37 as the existence of a

traumatic event is not assessed,38 which forms a main criterion as for-

mulated in the DSM‐IV and 5.

This may further limit conclusions of our findings, strengthened by

the conception that the stressor in cancer‐related PTSD is ambigu-

ous.21 While the DSM‐IV recognizes illness as a traumatic event that

threatens the physical or psychological integrity of a patient,17 the

DSM‐5 requires medical conditions to involve sudden or catastrophic

events.39

Furthermore, it needs to be noted that the DSM‐5 characterizes

PTSD by a fourth symptom cluster, namely, negative mood and cogni-

tion.39 As such, diagnostic criteria of PTSD have been in a period of

upheaval, which exacerbates its diagnosis and definition. Nevertheless,

independent from the PTSD diagnosis, a significant number of our

patients experienced PTSS indicating disrupted adjustment to their

medical condition and its treatment. Future research, however, should

overcome this limitation by using, for example, the structured clinical

interview for DSM‐5.39

5 | CONCLUSIONS

Our study indicates that uncertainty, health burden, and family strain

are most distressing for patients before HSCT, but decrease during

12 months following HSCT. As such, patients seem more impacted

by fear of the impending treatment than by the treatment itself, which

is illustrated by the high degree of uncertainty pre‐HSCT. Furthermore,

CTXD—and especially uncertainty and appearance and sexuality—is

strongly associated with PTSS. It seems vital to screen for distress

and increase sensitivity of medical professionals towards the emo-

tional burden in patients. Good communication and comprehensive

information are particularly important prior to and during cancer

treatment.

ACKNOWLEDGEMENT

Our study was funded by grants from the José Carreras Leukämie‐

Stiftung (grants DJCLS R 04/29pf and DJCLS R 07/37pf).

CONFLICT OF INTEREST

The authors declare no conflict of interest.

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How to cite this article: Kuba K, Esser P, Scherwath A. et al.

Cancer‐and‐treatment–specific distress and its impact on post-

traumatic stress in patients undergoing allogeneic hematopoi-

etic stem cell transplantation (HSCT). Psycho‐Oncology.

2017;26:1164–1171. https://doi.org/10.1002/pon.4295

KUBA ET AL. 1171

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