Symptom Distress Profiles in

Hospitalized Patients in Sweden:

A Cross-Sectional Study
Ingela Henoch, Richard Sawatzky, Hanna Falk, Isabell Fridh, Eva Jakobsson Ung,
Elisabeth Kenne Sarenmalm, Anneli Ozanne, Joakim Öhlén, Kristin Falk

Correspondence to Ingela Henoch Abstract: Symptom distress profiles of patients with a variety of diagnoses at two
E-mail: ingela.henoch@gu.se hospitals in Sweden were examined using a point-prevalence cross-sectional sur-
vey design. The sample included 710 patients present on internal medicine, sur-
Ingela Henoch gery, geriatric, and oncology acute care hospital wards of each hospital on a single
Associate Professor day. Symptom distress data were collected via structured interviews using a 0–10
Institute of Health and Care Sciences numeric rating scale (NRS). Fatigue was the most prevalent symptom, experienced
Sahlgrenska Academy
by 76.2% of the patients, followed by pain (65.2%) and sleeping difficulties (52.8%).
University of Gothenburg
Symptoms were fairly distressing (median NRS 5–6). Patients experiencing high
Box 457, SE-405 30
distress from fatigue and pain were more likely to be female, living alone, and to
Göteborg, Sweden
have more symptoms. Latent class analysis revealed three symptom distress pro-
Centre for Person-Centred Care (GPCC)
files that differed with respect to the degree of distress and number of symptoms.
Sahlgrenska Academy
The profiles were not substantially differentiated by diagnoses. Symptom distress
University of Gothenburg
Gothenburg, Sweden
needs to be assessed and treated on an individual basis, rather than predicting
distress levels based on diagnosis alone. ß 2014 Wiley Periodicals, Inc.
Richard Sawatzky
Keywords: hospitals; point prevalence survey; acute care; symptoms; symptom
Associate Professor
distress; symptom experience; symptom profile; symptom cluster; pain; fatigue
Trinity Western University School of
Research in Nursing & Health, 2014, 37, 512–523
Nursing
Vancouver, Canada Accepted 26 August 2014
Centre for Health Evaluation and DOI: 10.1002/nur.21624
Outcome Sciences Published online 12 October 2014 in Wiley Online Library (wileyonlinelibrary.com).
Providence Health Care
Vancouver, Canada
Troublesome symptoms are the most common reason for seeking hospital care,
Hanna Falk and many patients report multiple co-occurring symptoms (Kris & Dodd, 2004;
Institute of Health and Care Sciences Tranmer et al., 2003; Wadensten, Frojd, Swenne, Gordh, & Gunningberg, 2011).
Sahlgrenska Academy Symptom experience includes prevalence, frequency, intensity, duration and level
University of Gothenburg
of distress (Fu, McDaniel, & Rhodes, 2007; Rhodes, McDaniel, Homan, Johnson, &
Gothenburg, Sweden
Madsen, 2000). Patients' symptom experience in hospital settings is most often
Institute of Neuroscience and Physiology
studied as the prevalence of separate symptoms within the context of specific
Sahlgrenska Academy
University of Gothenburg medical diagnoses, in particular, cancer. However, recent research suggests that
Gothenburg, Sweden symptom experience may not be disease-specific, and that symptoms may appear
concurrently in symptom clusters. The purpose of this study was to examine
Isabell Fridh symptom profiles in general hospital settings in Sweden in order to increase our
Institute of Health and Care Sciences understanding of hospitalized patients' experience of symptom distress across
Sahlgrenska Academy different medical diagnoses and to determine the number and characteristics of
University of Gothenburg groups of patients with different symptom distress patterns.
Gothenburg, Sweden
School of Health Sciences
University of Borås Symptom Prevalence
Borås, Sweden
Although various aspects of symptom experience have been measured, the most
Note: Additional authors are listed on the last page. frequently used design in symptom studies seems to be the measurement of

C 2014 Wiley Periodicals, Inc.
 SYMPTOM DISTRESS PROFILE IN HOSPITALIZED PATIENTS/ HENOCH ET AL.
symptom prevalence in patients with a particular diagnosis.
For example, Nordgren and Sorensen (2003), found that the
most prevalent symptom in patients with heart failure in the
last 6 months of life was breathlessness, which was experi-
enced by 90% of patients. In a systematic review, Teunis-
sen et al. (2007) focused on patients with incurable cancer
and found that fatigue, pain, lack of energy, weakness, and
loss of appetite were the most frequent symptoms.
Symptom prevalence has also been studied in
patients with diagnoses that are often co-occurring (e.g.,
Janssen, Spruit, Uszko-Lencer, Schols, & Wouters, 2011;
Spichiger et al., 2011). Pain, breathlessness, and fatigue
were prevalent in more than 50% of a sample of patients
with cancer, AIDS, heart disease, chronic obstructive
disease (COPD), or renal disease (Solano, Gomes, &
Higginson, 2006). In addition to these symptoms, insomnia
has been identified as a prevalent symptom in patients with
chronic heart failure, COPD, or chronic renal failure (Jans-
sen, Spruit, Wouters, & Schols, 2008).
Although some symptoms are prevalent across a
range of different diagnoses, there are also differences
across diagnoses. For example, when hospitalized cancer
and non-cancer patients were compared, patients with can-
cer had a significantly higher prevalence of pain, nausea,
unpleasant taste, constipation, and vomiting (Tranmer
et al., 2003), and in patients with other diseases, the preva-
lence of shortness of breath and coughing was significantly
higher. There were no significant differences in the preva-
lence of psychological symptoms.
Symptom Number and Severity
Research to date has predominantly focused on individual
symptoms, but Spichiger et al. (2011) found that, on aver-
age, hospitalized patients experienced 13 symptoms on
admission, falling to 9 symptoms by 6 and 10 days after
admission. Lack of energy was the most prevalent and fre-
quent, and pain was the most severe. In several studies
(Janssen et al., 2011; Spichiger et al., 2011), severity has
been used interchangeably with intensity, as described by
Rhodes and Watson (1987). A study of 80 patients with
chronic heart failure (CHF) and 105 patients with COPD
revealed that the mean number of symptoms with a severity
score above 30 mm on a 100 mm visual analog scale was
9.1 for the CHF group and 8.1 for the COPD group (Jans-
sen et al., 2011). The most severe symptoms in both
patient groups were dyspnea, fatigue, and muscle weak-
ness, but the COPD patients experienced significantly
higher severity of dyspnea. Thus, previous research indi-
cates that regardless of diagnoses, patients often experi-
ence co-occurring symptoms of varying severity.
Symptom Distress
While symptom intensity or severity refers to the degree of
discomfort of a symptom, symptom distress pertains to the
Research in Nursing & Health
513
degree of suffering experienced as a result of a symptom
(Rhodes & Watson, 1987). Tishelman et al. (2005) and
Tishelman, Lovgren, Broberger, Hamberg, and Sprangers
(2010) have shown that patients evaluate symptom intensity
and symptom distress at different levels, which indicates
that they should be measured separately.
Visual analogue scales (VAS) and numerical rating
scales (NRS) are common ways of assessing symptom
intensity. Mantha, Thisted, Foss, Ellis, and Roizen (1993)
suggested a cut-off point for a pain NRS of greater than 3,
and a score less than 3 was considered an indicator of
analgesic success. Although there is no recommendation
for interpretation of symptom distress scores, one could
assume that hospitalized patients would experience
reduced symptom distress if the care provided is effective,
and that, similar to pain intensity, the goal of care might be
no symptom distress above 3 on an NRS of 0–10.
Given that most research to date has focused
on symptom prevalence and intensity, there is a lack of
knowledge about levels and patterns of symptom distress,
especially for general hospital unit patients with different,
and often multiple, diagnoses. In particular, it is unknown
whether there are commonly occurring profiles of symptom
distress or, if so, to what extent these profiles are explained
by different diagnoses and demographic characteristics of
patients.
Symptom Clusters or Profiles
Due to the co-occurrence of symptoms (Dodd, Miaskowski,
& Lee, 2004; Dodd, Miaskowski, & Paul, 2001; Kim,
McGuire, Tulman, & Barsevick, 2005; Miaskowski,
Aouizerat, Dodd, & Cooper, 2007), Miaskowski, Dodd, and
Lee (2004) argued that the new frontier of symptom
research is the study of symptom clusters or profiles.
Miaskowski et al. (2006) described two conceptual
approaches to symptom cluster research: (a) identification
of symptom profiles, or associations among different
symptoms (Henoch, Ploner, & Tishelman, 2009; Skerman,
Yates, & Battistutta, 2009), and (b) identification of differ-
ent subgroups of patients, based on their experience of
specific symptom profiles. The first approach assumes that
particular symptom profiles are representative of the entire
population (i.e., there is a homogeneous pattern of co-
occurring symptoms). The second approach assumes that
there are sub-populations with differing symptom profiles
(the pattern of correlations among the symptoms is hetero-
geneous in the population). When the second approach
was used by Miaskowski et al. (2006) in patients with
cancer, four distinct subgroups of patients with different
patterns of symptom experience were identified: (a) all
symptoms at a low level, (b) low level of pain but high level
of fatigue, (c) low level of fatigue but high level of pain,
and (d) all symptoms at a high level. In the present study,
we used the second approach, with a specific focus on
symptom distress.
514 RESEARCH IN NURSING & HEALTH
Profiles of Symptom Distress
The prevalence of distress related to symptoms in hospital-
ized patients in the palliative stage (Sigurdardottir &
Haugen, 2008) and pain in hospitalized patients (Wadens-
ten et al., 2011) has previously been examined in point
prevalence studies (i.e., a cross-sectional study undertaken
during 1 day). However, to our knowledge there are no
studies of subgroups of hospitalized patients grouped
according to levels of symptom distress or profiles of symp-
tom distress (Rhodes & Watson, 1987).
To date, research on symptom clusters and profiles
has focused predominantly on cancer patients. Knowledge
about symptom distress profiles is needed in order to iden-
tify vulnerable groups of patients. In this study, we exam-
ined symptom profiles in acute care hospital settings in
Sweden. We explored the characteristics of patients who
reported high distress for similar symptom profiles and
compared them to those who reported low distress. The
aims of the study were to:
1. describe levels of symptom distress in hospitalized
patients,
2. identify different symptom distress profiles, and
3. determine the extent to which demographic characteris-
tics, number of symptoms, and medical diagnoses
explain different symptom distress profiles.
Methods
The data for this study originated from two cross-sectional
surveys in Sweden performed identically, each during the
course of a single day. The first survey was conducted
at a university hospital on one day in February 2011
and the second at a county hospital on one day in
September 2011.
Sample
In total, around 80 hospital wards were involved, covering
internal medicine, surgery, geriatric, and oncology depart-
ments. Psychiatric and intensive care departments were
excluded, as it was assumed that for ethical or communica-
tion reasons these departments did not care for patients
who would be able to participate in the study. The sample
included patients on acute hospital wards that provided
care for a mixture of patients. All patients over the age of
18 who had been admitted to the selected wards before
7 a.m. on the collection day at the university hospital and
before 9 a.m. on the collection day at the county hospital
were included in the study. Those unable to communicate
were excluded.
On the data collection days, 1,874 patients had been
admitted to the selected hospital wards. Of these, 733 were
not available for interview because they were being cared
for on other wards or had been excluded by staff for a
Research in Nursing & Health
variety of reasons, and a further 431 declined to participate
or did not complete the interviews. The remaining 710 com-
pleted the interviews. The overall response rate was 38%
(see Fig. 1).
Compared to the total population of the selected
wards, the sample had a similar gender distribution (46.8%
male in the sample and 46.1% in the non-participating
group), but the sample was younger (p ¼ .02), and a greater
proportion of the non-participating patients died within
a year (18.5% vs. 29.3%, p < .001). Sixty-four percent
were retired. The most prevalent reason for admission was
experiencing symptoms (49%). Demographic and clinical
characteristics of the patients are presented in Table 1.
Instruments
The following items were obtained from the medical
records: reason for admission (i.e., planned, referred, symp-
toms, accident, or other) and the main diagnosis according
to International Classification of Diseases (ICD-10) by the
World Health Organisation (WHO, 2010). National registry
mortality data were obtained 1 year after the data collection
days.
The remaining data were collected in structured inter-
views. A demographic form was used to obtain information
about age, gender, living situation (i.e., living alone, living at
home, or in residential care), highest level of education,
employment situation, and immigrant status (i.e., born in
Sweden or elsewhere).
A Swedish translation of the Edmonton Symptom
Assessment Scale (ESAS) (Bruera, Kuehn, Miller, Selmser,
& Macmillan, 1991; Nekolaichuk, Watanabe, & Beaumont,
2008), which has previously been used in Sweden
(Astradsson, Granath, Heedman, & Starkhammar, 2001),
was adapted to assess the following symptoms: pain,
dyspnea, fatigue, sleeping difficulties, loss of appetite,
depression, and anxiety. Adaptation involved changing the
item about drowsiness to sleeping difficulties, because
sleep was considered important in a sample admitted to
hospital. This instrument was administered via structured
interviews.
The patients were asked to respond to three ques-
tions related to each symptom. The first concerned the
prevalence of the symptom (i.e., whether the symptom was
present or absent), except for the loss of appetite item. In
Swedish, a question about appetite is ambiguous; appetite
is always present, but it could be good or bad. When a
symptom was present, patients answered two additional
questions, in accordance with the Memorial Symptom
Assessment Scale (MSAS) (Browall, Kenne Sarenmalm,
Nasic, Wengstrom, & Gaston-Johansson, 2013; Portenoy
et al., 1994). The first additional question measured symp-
tom intensity, for example, “how severe is your pain?” The
second measured distress, for example, “how distressing
is your pain?” Intensity and distress were assessed on
an 11-point numeric rating scale (NRS), ranging from 0,
 SYMPTOM DISTRESS PROFILE IN HOSPITALIZED PATIENTS/ HENOCH ET AL. 515

Paents admied to the hospitals at

the data collecon day
Hospital 1: 1241
Hospital 2: 633
Total: 1874

Paents not available for interview or

excluded by the staff for any reason:

Hospital 1: 523
Hospital 2: 210
Total: 733

Paents invited to parcipate in the

interviews

Hospital 1: 718
Hospital 2 423
Total: 1141
Paents declining to parcipate in the
interviews

Hospital 1: 215
Hospital 2: 208
Total: 423
Paents included in the study

Hospital 1: 503
Hospital 2: 215
Total: 718
Paents not compleng the interviews

Hospital 1: 5
Hospital 2: 3
Total: 8

Paents compleng the interviews

Hospital 1: 498
Hospital 2: 212

Total: 710

FIGURE 1. Flow chart of the sample.

no intensity/distress, to 10, worst possible intensity/distress.
For the aims of the present study, we analyzed results of
the distress scale. For patients who did not report a given
symptom, the distress score was set at 0.
Procedures
Data were collected by nursing students who were at the
end of their third year of an undergraduate nursing program.
The students attended workshops on campus to receive
training in data collection prior to the data collection day.
On the data collection days, the research team was present
at the hospitals to support the students as needed. A pilot
study was conducted 2 months prior to the first data collec-
tion day in order to refine the logistics.
One of the hospitals was located close to the univer-
sity, but the other hospital was a county hospital that is
located 160 km from the university. The students were
transported there by bus. Consequently, the data collection
started 2 hours later in the county hospital.
On arrival at the wards, the students were told of any
patients who should be excluded based on the exclusion
criteria. The students then provided the eligible patients
with verbal and written information about the study and
obtained each patient's informed consent prior to data
collection. The study was conducted in accordance with

Research in Nursing & Health

516 RESEARCH IN NURSING & HEALTH

Table 1. Characteristics of the Sample (N ¼ 710) and of Subgroups With Low and High Symptom Distress Levels for Both Pain
and Fatigue

Mean (SD)

Total (N ¼ 710) Low Pain and Fatigue Distress (n ¼ 207) High Pain and Fatigue Distress (n ¼ 243)

Number of symptoms 3.0 (2.0) 2.0 (1.0) 5.0 (1.0)  

Age 67.0 (17.2) 67.4 (15.7) 66.6 (17.3)

Median (Range)

Total (N ¼ 710) Low Pain and Fatigue Distress (n ¼ 207) High Pain and Fatigue Distress (n ¼ 243)

Number of symptoms 4 (0–7) 2 (0–7) 5 (2–7)

Age 69.0 (18–99) 69.0 (21–95) 69.0 (18–95)

n (%)

Total (N ¼ 710) Low Pain and Fatigue Distress (n ¼ 207) High Pain and Fatigue Distress (n ¼ 243)

Male 332 (46.8) 117 (56.5) 97 (39.9)

Female 378 (53.2) 90 (43.5) 146 (60.1)
Living alone 335 (47.2) 80 (38.6) 120 (49.2)
Born in Sweden 625 (88.0) 180 (87.0) 212 (87.2)

n (%)

Total Low Pain and Fatigue High Pain and Fatigue

(N ¼ 710) Distress (n ¼ 207) Distress (n ¼ 243)

Infections 44 (6.2) 9 (4.3) 18 (7.4)

Tumors 155 (21.8) 40 (19.3) 55 (22.6)
Blood, blood-forming 38 (5.4) 9 (4.3) 11 (4.5)
Endocrine, nutritional, metabolic 144 (20.3) 41 (19.8) 46 (18.9)
Mental, behavioral, neurodevelopmental 50 (7.0) 16 (7.7) 23 (9.5)
Nervous system 56 (7.9) 18 (8.7) 17 (7.0)
Circulatory system 331 (46.6) 101 (48.8) 110 (45.3)
Respiratory system 104 (14.6) 28 (13.5) 31 (12.8)
Digestive system 93 (13.1) 30 (14.5) 33 (13.5)
Musculoskeletal system, connective tissue 97 (13.7) 21 (10.1) 49 (20.2) 
Genitourinary system 95 (13.4) 27 (13.0) 26 (10.7)
Symptoms, signs, abnormal clinical or lab findings 69 (9.7) 19 (9.2) 24 (9.9)
Injury, poisoning, or consequence of external harm 102 (14.2) 28 (13.5) 35 (14.4)
External causes of morbidity 126 (17.7) 36 (17.4) 40 (16.5)
Factors influencing health status/contact with health services 97 (13.7) 27 (13.0) 37 (15.2)

Note. SD, standard deviation. Difference between groups:  p < .05, 

p < .01, 
p < .001.

the Helsinki declaration (World Medical Association, 2008).
Ethical approval was obtained from the Regional Ethics
Committee (Ref. No. 604-10).
Analytical Strategies
This first aim was addressed using frequencies, means,
and standard deviations to describe patients' characteristics
and their levels of distress for each symptom.
To address the second aim of identifying symptom
distress profiles, the patients were grouped (a) according
to the most prevalent symptoms, and (b) based on latent
classes with different symptom profiles.
In the first approach, pain and fatigue were identified
as the most prevalent symptoms, present in the more than
two-thirds of the sample. Following Mantha et al. (1993),
who used a cut-off of 3 for pain on a scale of 1–10, and
Miaskowski et al. (2006), who made a division into sub-
groups according to high and low levels of pain and fatigue
using the original 0–10 response scale. Two groups
were extracted for comparison: Group 1 with pain and
fatigue 3; and Group 2 with pain and fatigue >3. Patients
who reported high distress on one symptom but not the
other, that is, pain 3 and fatigue >3 or pain >3 and
fatigue 3, were not included in this comparison.
For the second approach, latent class analysis was
done using the MPlus 7.0 (Muthén & Muthén, 2013) soft-
ware, to determine whether there were relatively homo-
geneous subgroups of patients who had similar symptom
profiles. The distributions of the variables then were

Research in Nursing & Health

 SYMPTOM DISTRESS PROFILE IN HOSPITALIZED PATIENTS/ HENOCH ET AL.
examined to determine whether linear modeling could be
applied in latent class analysis. Symptom distress on the
original 0–10 scale could not be treated as a continuous
variable in multivariate analysis because responses were
far from normally distributed. To mitigate this, we catego-
rized the symptom distress responses into five ordinal cate-
gories: 0 ¼ symptom distress score of 0; 1 ¼ score of 1–3;
2 ¼ score of 4–6; 3 ¼ score of 7–8; and 4 ¼ score of 9–10.
These variables were subsequently specified as ordinal var-
iables in latent class analysis. A latent class analysis
approach to symptom clusters is based on the premise that
correlations among multiple symptoms arise in part
because of different subgroups within the population. This
approach involves adding latent classes until a threshold in
the improvement of model fit is reached.
The latent class model was specified using a propor-
tional odds logistic link function, with all item thresholds
allowed to vary across the latent classes. According to a
conventional proportional odds model, there were four
thresholds per symptom variable, with threshold 0 repre-
senting category 4 versus all categories <4; threshold 1
representing categories 4 to 3 versus all categories <3, and
so on.
A robust maximum likelihood estimation method
(MLR) (Muthén & Muthén, 2013) was used to fit the model.
The number of latent classes was determined by comparing
models with k and k  1 classes, where k is the number of
latent classes in the model. The model with the greatest
number of latent classes that contribute to improved fit,
relative to the model with one fewer latent class, was con-
sidered to be the best fit. Support for a k-class model over
a model with k  1 classes was ascertained based on
the following criteria: (a) a smaller Bayesian Information
Criterion (BIC), (b) a statistically significant Vuong-Lo-
Mendell-Rubin likelihood ratio test (VLMR LRT) (Henson,
Reise, & Kim, 2007; Lo, Mendell, & Rubin, 2001; Vuong,
1989), and (c) a statistically significant bootstrapped likeli-
hood ratio test (McLachlan & Peel, 2000; Nylund, Asparou-
tiov, & Muthen, 2007). In addition, the entropy value, which
Table 2. Number of Patients Reporting Symptoms and Levels of Symptom Distress in Patients Reporting Symptoms (N ¼ 710)
Number Reporting
Symptom n %
Pain 463 65.2
Dyspnea 240 33.8
Fatigue 541 76.2
Sleeping difficulties 375 52.8
Nausea 207 29.2
Depression 332 46.9
Anxiety 322 45.4
Loss of appetite All patients included
Note. SD, standard deviation. Distress of each reported symptom was measured on a numerical rating scale ranging from 0 (no
distress) to 10 (worst possible distress).
Research in Nursing & Health
517
is indicative of the quality of classification, was taken into
consideration (Lubke & Muthén, 2007) and the model's
parameters estimated with reasonable accuracy (i.e., the
standard errors should not be exceedingly large).
The third aim, to compare demographics, symptom
numbers, and medical diagnoses of group members, was
explored separately for each of the two sets of groups
depicted above. We first compared the high-distress and
low-distress groups (created using symptom distress score
cut-offs on both pain and fatigue of above or below 3) using
t-tests and Chi square tests at an alpha level of .05. A simi-
lar comparison was made across the latent classes identi-
fied by the latent class analysis. We used multinomial
logistic regression with pseudo-class draws to determine
whether the latent class symptom distress profiles were
explained by any significant differences in demographic
characteristics, number of symptoms, and prevalence of
certain diagnostic categories (Bandeen-Roche, Miglioretti,
Zeger, & Rathouz, 1997; Muthén & Muthén, 2007).
Results
Fatigue was the most prevalent symptom, experienced by
76.2% of the patients, followed by pain (65.2%) and sleep-
ing difficulties (52.8%). Among the patients who reported
the presence of symptoms, the median score for symptom
distress was 5 or 6, for all symptoms except for loss of
appetite, which was 4 (SD 3.3) (Table 2).
For the first approach to identify symptom profiles,
Group 1, with both pain and fatigue distress 3, consisted
of 207 individuals. Group 2, with both pain and fatigue dis-
tress >3, consisted of 243 individuals. In comparison of
group characteristics, as seen in Table 1, the high-distress
group had more women, people living alone, people living
in residential care (not shown), and people diagnosed with
diseases of the musculoskeletal system. This group also
had a higher number of symptoms (median of 5 vs. 2,
p  .001).
Distress of Symptom (Possible Range 1–10)
Mean SD Median Range
6.04 2.7 6 0–10
5.04 2.9 5 0–10
5.24 2.9 5 0–10
5.54 2.9 6 0–10
5.02 2.8 5 0–10
5.39 2.8 5 0–10
5.21 2.8 5 0–10
2.55 3.3 0 0–10
518 RESEARCH IN NURSING & HEALTH

Latent class analysis resulted in the identification
of three latent classes with different symptom profiles. The
relative fit of the latent class analyses with 1, 2, 3, and 4
latent classes is shown in Table 3. The lowest BIC value
was obtained for the 3-class model. Although the BLRT
continued to suggest a relative improvement in fit when a
4-class model was specified, the BIC was greater and the
VLMR LRT was not statistically significant. In addition, the
precision of several parameters in the 4-class model was
poor, with relatively large standard errors. The 3-class
model was thus retained as the most trustworthy model,
with relative proportions of latent class membership of .32,
.46, and .22 for latent classes 1 (low symptom distress),
2 (moderate symptom distress), and 3 (high symptom
distress), respectively. The classes differed significantly in
overall symptom profiles (Fig. 2). In comparison to class 1,
the symptom profiles for classes 2 and 3 also were charac-
terized by greater symptom distress associated not only
with fatigue and pain but with sleep problems, loss of appe-
tite, depression and anxiety.
Those with the first profile (class 1) less frequently
reported distress for any symptoms, in comparison to peo-
ple in the other two classes. Distress associated with pain
was most prevalent for this profile but occurred in less than
50% of the patients and was most frequently rated at or
less than 6 on the symptom distress scale. Only 11.2%
rated their distress associated with pain to be greater than
6, as is shown by the top two stacks of the bar chart for
pain in this class.
For the second profile (class 2), symptom distress
was greater than in class 1. Of those who reported symp-
toms, the level of symptom distress most frequently
reported was in the mid-range of the scale (4–8), with very
few reporting the highest levels of symptom distress (9 or
10). Compared to classes 1 and 2, class 3 included a rela-
tively greater percentage of people reporting the highest
levels of symptom distress (levels 9–10); 40% and 38%
reported distress levels above 8 for fatigue and pain,
respectively.
We then investigated whether the latent class symp-
tom distress profiles were explained by any significant
differences in demographic characteristics, number of
symptoms, and prevalence of certain diagnostic categories
(Aim 3). The results, shown in Table 4, suggest that the
latent classes were very similar in most respects. The only
exceptions were that people in class 2 were more likely
than those in class 1 to have an infection (odds ratio [OR]
3.3, 95% confidence interval [CI] 1.2–9.4) or neoplasm (OR
1.8; CI 1.1–2.8), and those in class 3 were more likely than
those in class 1 to be female (OR 1.8; CI 1.2–2.9). In addi-
tion, patients in classes 2 and 3 reported a greater number
of symptoms (means of 4.3 and 5.6, respectively) than
those in class 1 (mean of 1.6). All these differences
remained statistically significant in multivariate logistic
regression using pseudo-class draws. There were no sta-
tistically significant differences between classes 2 and 3 on
any variables.
Discussion
In this study of hospitalized patients, most patients reported
significant symptom distress, with values of 5 or higher on a
1–10 scale for all symptoms except appetite. Fatigue and
pain were the most prevalent symptoms. Fatigue, pain,
sleeping difficulties, depression, and anxiety were prevalent
in more than 45% of the patients. In these patients, the
median score on the 10-point NRS was 5 or 6. This high
level of distress is considerably above a score of 3, which
has been described by Mantha et al. (1993) as a pain score
cut-off for analgesic success. Although such a cut-off point
has not been reported for other symptoms, it could be
argued that many of the patients in the present study did
not have sufficient symptom alleviation, despite being
hospitalized and under the care of professionals.
As expected, the patients with high levels of pain and
fatigue also experienced a higher number of other symp-
toms. This finding supports other evidence that symptoms
occur in clusters (Dodd et al., 2001, 2004; Kim et al., 2005;

Table 3. Relative Fit for Models of Up to Four Latent Classes

Class Proportionsa
VLMR BLRT
K P LL BIC LR p-value p-value Entropy C1 C2 C3 C4

1 32 7,130 14,469 1.0

2 65 6,791 14,009 674 .01 .01 .73 .61 .39
3 98 6,670 13,985 224 .761 .01 .74 .32 .49 .19
4 131 6,697 14,073 127 .764 .01 .77 .13 .13 .34 .40

Note. N ¼ 710. K ¼ number of latent classes in the model. P ¼ number of parameters. LL ¼ log likelihood. BIC ¼ Bayesian Information
Criterion. LR ¼ Likelihood ratio of 2-, 3- and 4-class models. VLMR ¼ Vuong-Lo-Mendel-Rubin likelihood ratio test. BLRT ¼ Bootstrapped
likelihood ratio test. C1–C4 ¼ classes 1–4. The bold row indicates the selected 3-class model.
a
Probability of latent class membership predicted by the model. The classification of individuals based on their posterior probabilities
of latent class membership is shown as latent class proportions. The proportions may not add up to 1 due to rounding off.

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 SYMPTOM DISTRESS PROFILE IN HOSPITALIZED PATIENTS/ HENOCH ET AL. 519

Class 1 Class 2 Class 3

100 100 100

80 80 80

Percentage
60 60 60

40 40 40

20 20 20

0 0 0

Depression

Depression
Pain
Dyspnea
Fatigue

Nausea

Depression
Appetite

Pain
Dyspnea
Fatigue

Nausea
Appetite

Pain
Dyspnea
Fatigue

Nausea
Appetite
Sleep prob.

Sleep prob.

Sleep prob.
Anxiety

Anxiety

Anxiety
Symptom distress levels
1-3
4-6
7-8
9-10

FIGURE 2. Comparison of symptom frequencies and symptom distress categories across latent clas-
ses. Notes. Category 0 (no distress) is not shown. The height of the bar is representative of symptom
prevalence. The shading indicates the level of symptom distress as per the legend.

Miaskowski et al., 2007). Spichiger et al. (2011) found an
average of 13 symptoms in advanced cancer patients on
admission to a hospital, which decreased to 9 during the
stay. In the present study, most patients across diagnoses
in the present study experienced four or more symptoms,
confirming that symptom relief ought to be a target of
intervention.
The high symptom distress level for fatigue could be
explained by difficulty alleviating fatigue during hospitaliza-
tion. Although there are effective interventions (Barsevick
et al., 2013; Wenzel et al., 2013) and clinical guidelines for
fatigue management (Borneman et al., 2011), fatigue is a
common and distressing symptom that has a major impact
on daily life, and our findings suggest it is still an underrated
healthcare problem. Efforts are being made to increase
knowledge of cancer-related fatigue, to improve the preci-
sion of measurement, and to implement effective interven-
tions among patients with cancer (Barsevick et al., 2013).
In the present study, fatigue was reported by 76% of the
patients, most of whom did not have cancer. Clinicians in
acute care should attend to fatigue as a significant concern
for all their patients.
The two approaches to grouping patients by symptom
profiles produced groupings with some similarities. The
group of patients with distress scores above 3 on pain and
fatigue included relatively more women than men and more
people living alone than people living with others. This
was consistent with the gender difference between class 1
(relatively less symptom distress) and class 3 (relatively
greater symptom distress). The higher level of symptom
experience for women is consistent with previous research,
for example Clark, Smith, Lovell, and Currow (2012), who
found that women in palliative care reported higher levels of
pain intensity than did men. Kirkova, Rybicki, Walsh, and
Aktas (2012) explored symptom prevalence in advanced
cancer patients and found that men had a higher overall
prevalence of sleep problems than women, whereas nau-
sea, anxiety, and vomiting were more prevalent for women.
Our findings suggest that it is important to identify poten-
tially vulnerable groups of patients in order to alleviate their
symptom distress. One such group could be women living
alone.
The three symptom distress profiles identified in latent
class analysis differed mainly in the presence of symptoms
and severity of symptom distress but were similar across
most diagnoses. The latent classes were very similar within
the diagnostic categories (with the exception of tumors and
circulatory diseases). Although this may be in part because
disease-specific symptoms were not measured, these find-
ings are consistent with the definition of symptom distress
as a subjective illness experience and challenge reliance
on disease classification as the basis for symptom

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520 RESEARCH IN NURSING & HEALTH

Table 4. Characteristics of the Three Symptom Distress Profiles Identified in Latent Class Analysis

Mean (SD)

Latent Class 1 (n ¼ 229) Latent Class 2 (n ¼ 349) Latent Class 3 (n ¼ 132)

Number of symptoms 1.6 (1.4)2,3 4.3 (1.6)1,3 5.6 (1.6)1,2

Age 69.0 (16.8) 65.9 (19.5) 66.0 (19.4)

%a

Latent Class 1 (n ¼ 229) Latent Class 2 (n ¼ 349) Latent Class 3 (n ¼ 132)

3
Gender 46.2 54.8 60.91
Living alone 56.93 52.8 44.51
Born in Sweden 12.6 9.23 18.02

%b

Latent Class 1 Latent Class 2 Latent Class 3

(n ¼ 229) (n ¼ 349) (n ¼ 132)

Infections 2.82 8.11 7.0

Tumors 18.42 28.01 20.3
Blood, blood-forming 5.4 6.2 6.2
Endocrine, nutritional, metabolic 20.0 21.1 20.3
Mental, behavioral, neurodevelopmental 6.8 7.1 7.4
Nervous system 9.0 7.5 7.2
Circulatory system 49.6 48.0 45.2
Respiratory system 10.43 15.9 18.81
Digestive system 14.4 12.8 11.7
Musculoskeletal system, connective tissue 12.9 13.0 16.8
Genitourinary system 11.9 14.1 14.2
Symptoms, signs, abnormal clinical or lab findings 7.8 11.4 10.4
Injury, poisoning, or consequence of external harm 18.5 12.2 12.4
External causes of morbidity 22.5 16.0 14.2
Factors influencing health status/contact with health services 10.8 15.4 14.1

Note SD, standard deviation.. 1,2,3Statistically significant difference (p < .05) from class 1, 2, or 3 respectively, based on bivariate
multinomial logistic regression with pseudo-class draws.
a
Referent is male; living alone; born in Sweden.
b
Referent is without this problem.

assessment and management. Our finding that symptom
distress profiles are not necessarily specific to diseases is
consistent with other evidence of the prevalence of severe
symptoms regardless of diagnosis (Janssen et al., 2008;
Solano et al., 2006) and suggests that assessments of
symptom distress should not be driven exclusively by a pri-
ori information about a patient's diagnosis. Clinicians are
advised, therefore, to base their care planning on patients'
narratives of their symptom experience (Ekman et al., 2011)
and patient-reported outcome measures (Greenhalgh,
Long, & Flynn, 2005; Snyder et al., 2012).
Limitations
A significantly larger proportion of non-participating patients
was older and died within a year of the data collection day.
This indicates that the non-participating patients were
more severely ill than the present sample, and it could be
assumed that the overall levels of symptom distress would
be even higher if the non-participators had been included.
Further research is needed to determine the extent to which
the patterns and profiles of symptom distress apply to the
most severely ill and to other hospital-based samples.
There was a lower participation rate in the county
hospital, which could be because the data collection started
2 hours later in the morning, by which time a larger propor-
tion of the patients may have been discharged or relocated
for diagnostic testing. If the data collection had started
earlier, the participation rate in the county hospital might
have been higher, and this could have affected the results.
We also caution against comparing the symptom dis-
tress results from the present study to symptom intensity
results in other research. As noted earlier, symptom inten-
sity and symptom distress can co-occur at different levels
and should be measured separately (Tishelman et al.,
2005, 2010).
Latent class analysis assumes that correlations
among the symptom distress variables arise because of
latent classes (heterogeneity) in the sample. Our finding of
multiple latent classes is consistent with this assumption.

Research in Nursing & Health

 SYMPTOM DISTRESS PROFILE IN HOSPITALIZED PATIENTS/ HENOCH ET AL.
However, it is possible that correlations among the symp-
tom distress variables were a result of unmeasured factors
other than those analyzed here. Also, it is possible that
additional latent classes may have been identified had
the sample been larger. Further investigation with larger
samples is recommended to gain a better understanding of
correlations among symptom distress variables in hetero-
geneous populations.
Finally, it should be noted that, given the exploratory
nature of these analyses, the statistical significance levels
were not adjusted for multiple comparisons. Additional
research is needed to replicate the symptom profiles and to
confirm the group differences reported here.
Conclusion
The most noteworthy finding in the present study was that a
high percentage of patients experienced pain, fatigue, and
other symptoms at a level that required treatment, regard-
less of diagnosis, and despite being hospitalized for care to
address those symptoms. The results further suggest that
symptom distress profiles are similar across different diag-
noses. This is consistent with the notion that symptoms
are subjective experiences that should be assessed in a
dialogue with the patient and not assumed to be high or low
based on diagnosis. Routine and comprehensive symptom
assessment is recommended, with the goal of increasing
care providers' focus on symptom alleviation, thereby
reducing symptom distress (Sarna, 1998).
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Acknowledgements
Support for the study was provided by the Health and Medical Care Committee of the Regional Executive Board, Västra Göta-
land Region, Sweden; Ulla-Carin Lindquist Foundation, Sweden; and Sahlgrenska University Hospital Foundations, Gothenburg,
Sweden.

Eva Jakobsson Ung Joakim Öhlén

Associate Professor Professor
Centre for Person-Centred Care (GPCC) Centre for Person-Centred Care (GPCC)
Sahlgrenska Academy Sahlgrenska Academy
University of Gothenburg University of Gothenburg
Gothenburg, Sweden Gothenburg, Sweden; Institute of Health and Care Sciences
Institute of Health and Care Sciences Sahlgrenska Academy
Sahlgrenska Academy University of Gothenburg
University of Gothenburg Gothenburg, Sweden
Gothenburg, Sweden Palliative Research Centre
Ersta Sköndal University College and Ersta Hospital
Elisabeth Kenne Sarenmalm Stockholm, Sweden
Research and Development Centre
Skaraborg Hospital Kristin Falk
Skövde, Sweden Centre for Person-Centred Care (GPCC)
Palliative Research Centre Sahlgrenska Academy
Ersta Sköndal University College and Ersta Hospital University of Gothenburg
Stockholm, Sweden Gothenburg, Sweden
Institute of Health and Care Sciences
Anneli Ozanne Sahlgrenska Academy
Institute of Neuroscience and Physiology University of Gothenburg
Sahlgrenska Academy Gothenburg, Sweden
University of Gothenburg
Gothenburg, Sweden

Research in Nursing & Health