Copyright B 2018 Wolters Kluwer Health, Inc. All rights reserved.

Trude Haugland, PhD, RN

Holli A. DeVon, PhD, RN, FAHA, FAAN
Downloaded from https://journals.lww.com/cancernursingonline by BhDMf5ePHKav1zEoum1tQfN4a+kJLhEZgbsIHo4XMi0hCywCX1AWnYQp/IlQrHD3l7ttZ9b/VuKAodXldVKkmwPcyp10uWgP/wGNQKTVKKxe4ozkl33gBA== on 03/02/2020

Symptoms, Psychosocial Factors, and

Health-Related Quality of Life in Patients
With Neuroendocrine Tumors
An Integrative Review

K E Y W O R D S Background: Understanding the influence of psychosocial factors and symptoms

Gastrointestinal on health-related quality of life (HRQoL) might help researchers develop
neuroendocrine tumors interventions to optimize HRQoL in patients with neuroendocrine tumors (NETs).
Health-related quality Objective: The aim of this study was to characterize available evidence on
of life
symptoms, psychosocial factors, and HRQoL in patients with NET. Methods: For
Psychosocial factors
this integrative literature review, the literature search was guided by the
Symptoms
methodology proposed by Whittemore and Knafl. MEDLINE, CINAHL, PubMed,
PsychINFO, and Google Scholar were searched for articles exploring symptoms,
psychosocial factors, and HRQoL in patients living with gastrointestinal NETs.
Results: Combining keywords yielded 37 articles after removing 2 duplicates.
Twenty-three articles were removed because they did not meet inclusion criteria. Two
articles had a qualitative design. The final review included 15 studies.
Geographically diverse studies indicate that patients with NET experience fatigue,
nausea/vomiting, pain, dyspnea, and sleep disturbance. Anxiety, higher depression,
and stress negatively influenced HRQoL. More social support, self-efficacy, and
optimism were associated with better HRQoL. Findings from the qualitative studies
emphasize that NET-related symptoms and adverse effects of the treatment influence the
patients" HRQoL. Conclusion: This review identified fatigue, nausea/vomiting,
pain, dyspnea, and sleep disturbance as the most important symptoms. The most
frequently reported psychosocial factors were anxiety and depression, which

Author Affiliations: School of Nursing, Diakonova University College (Dr Correspondence: Trude Haugland, PhD, RN, School of Nursing, Diakonova
Haugland), Oslo, Norway; and College of Nursing, University of Illinois at University College, Postboks 6716 St, Olavs Plass, NO-0130 Oslo, Norway
Chicago (Dr DeVon). (trude.haugland@diakonova.no).
The authors have no funding or conflicts of interest to disclose. Accepted for publication March 9, 2018.
DOI: 10.1097/NCC.0000000000000614

E36 n Cancer Nursing , Vol. 42, No. 4, 2019

A
Haugland and DeVon

Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.

 influenced HRQoL negatively. Social support and self-efficacy had a positive impact
on HRQoL. Implications for Practice: Researchers and clinicians must understand
the importance of psychosocial factors and symptoms associated with HRQoL to
develop targeted interventions to optimize HRQoL in patients with NET.
G
astrointestinal neuroendocrine tumors (GI-NETs)
comprise a heterogeneous group of neoplasms with
shared clinical and histochemical features. Although
the reported incidence of neuroendocrine tumors (NETs) has
increased worldwide, it continues to be rare with an approxi-
mate annual incidence of 5.2 of 100000 individuals.1 Symp-
toms arise from the enterochromaffin cells based on the production
of hormonally active substances including serotonin, bradykinins,
and tachykinins.2 Symptoms are manifested as flushing, di-
arrhea, fatigue, nausea/vomiting, dyspnea/shortness of breath,
sleep disturbance, and pain.3 The cure for GI-NET is surgery
if metastases have not occurred. In most cases, metastases occur
before diagnosis. Evidence suggests that several therapies may
improve survival and alleviate symptoms. Somatostatin analogs
and systemic therapies are efficacious.3,4 However, all therapies
have adverse effects and complications.
Tumor burden and symptoms are also associated with health-
related quality of life (HRQoL).5 Thus, treatment guidelines tar-
get symptomatic relief and other strategies to improve HRQoL.3
To assess the balance of benefits versus adverse effects of therapy,
HRQoL has emerged as an important outcome measure. Health-
related quality of life is a multidimensional construct reflecting
an individual"s perception of current levels of health status and
well-being, including self-reported domains of physical, social,
functional, and mental health.6
A diagnosis of NET and resultant symptoms, treatment adverse
effects, and complications may lead to anxiety,7,8 depression,7,9,10
stress,11 and physical or emotional interference with activities of
daily living.12 A cancer diagnosis has a significant impact on an
individual over the long term, and living one"s life in a manner
similar to ‘‘before’’ the cancer diagnosis might not be possible.13
Despite that most patients find a way of adjusting to cancer,
new skills are needed to cope with physical and physiological
pain, lack of control over the situation, and uncertainty about the
future.14 Jim6nez-Fonseca et al15 reviewed HRQoL in patients
with well-differentiated metastatic gastroenteropancreatic NETs
and found that the patients had mild symptoms and HRQoL
scores similar to healthy populations. In contrast, Beaumont
et al7 and Haugland et al16 found that patients with NETs had
significantly worse HRQoL compared with healthy populations.
Similar to the review by Martini et al,1 we suggest that lack of
methodological quality in reporting HRQOL in patients with
NETs may explain the inconsistent results in previous studies.
Social support has been shown to play a key role in the
coping process,17,18 enabling individuals to alter the way they
view and experience their lives by engaging in a process of cog-
nitive restructuring. Assistance from providers may facilitate an
individual"s self-regulation by supporting his/her adaptive capa-
bilities and helping him/her overcome adversity. Higher levels of
social support are associated with better mental19,20 and physical
Symptoms, Psychosocial Factors, and HRQoL in NET Patients
Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.
HRQoL20 in a variety of cancer diagnoses. In addition, patients
with NET who had strong social support demonstrated better
mental HRQoL than those with less support.11,21
General self-efficacy may also affect adjustment to cancer
and HRQoL. General self-efficacy refers to a global confidence
in coping abilities across a wide range of demanding situations
and reflects a person"s general problem-solving ability.22 Sig-
nificant associations between higher general self-efficacy and
HRQoL have been demonstrated.11,19,20,22,23
Few investigators have reported on psychosocial factors,
NET-related symptoms, and potential associations with
HRQoL. It is likely that levels of psychosocial factors such as
social support, anxiety, depression, stress, distress, psychosocial
interference with family, optimism, pessimism, and general self-
efficacy, as well symptoms (flushing, diarrhea, fatigue, nausea/
vomiting, dyspnea/short of breath [carcinoid heart disease],
sleep disturbance, pain), may influence the experience of HRQoL
among patients with NET. Understanding the levels of psycho-
social factors, symptoms, and the potential relationship with
HRQoL might help researchers develop targeted interventions
to optimize HRQoL in patients with NET. Therefore, the aim
of this review was to characterize available evidence on symptoms,
psychosocial factors, and HRQoL in patients with NET.
n Methods
The literature review was completed using an integrative re-
view approach. Integrative reviews allow for both experimen-
tal and nonexperimental research to be analyzed and may
combine data from both theoretical and empirical literature
to gain a better understanding of the phenomenon of interest.
We used the methodology recommended by Ganong,24 which
includes purpose, inclusion criteria, literature search, sampling
decisions, analyses of findings, and interpretation of results.
The literature search was also guided by the methodology pro-
posed by Whittemore and Knafl,25 which includes a review of
computerized databases, topic of interest, search terminology,
ancestry searching, journal handsearching, searching registries,
issue of publication bias, maximum numbers of eligible pri-
mary sources, search terms, databases used, additional search
strategies, and inclusion and exclusion criteria.
We searched MEDLINE, CINAHL, PubMed, PsychINFO,
and Google Scholar combining the search terms ‘‘neuroendo-
crine tumors,’’ ‘‘HRQoL,’’ ‘‘stress/distress,’’ ‘‘social support,’’
‘‘anxiety,’’ ‘‘depression,’’ ‘‘self-efficacy,’’ ‘‘burden of disease,’’ ‘‘pain,’’
‘‘flushing,’’ ‘‘diarrhea,’’ ‘‘eating disorders,’’ ‘‘nutrition intolerance,’’
‘‘mental/physical fatigue,’’ and ‘‘shortness of breath.’’ Unpublished
manuscripts were excluded. Studies that used instruments to
measure any of the following symptomsVflushing, diarrhea,
Cancer NursingA, Vol. 42, No. 4, 2019 n E37
dyspnea/short of breath, fatigue, nausea/vomiting, sleep disturbance,
and painVfor patients diagnosed with GI-NET were examined.
The review process included scrutinizing titles, abstracts,
and full-text articles. Articles were included if they met the
following criteria: (1) original research report; (2) experimen-
tal or nonexperimental design, such as case studies, observa-
tional studies, and meta-analyses used in our defined population;
(3) quantitative measure of HRQoL and/or well-being; (4)
quantitative measure of symptoms (flushing, diarrhea, dyspnea/
short of breath, fatigue, nausea/vomiting, dyspnea, sleep
disturbance, pain); (5) qualitative studies including focus on
quality of life and psychosocial factors; (6) published from 1995
to 2016; and (7) published in English. Biomedical intervention
studies were excluded. Both authors had to agree for the article
to be included in this review.
Figure n Flow diagram of the selection process (Prisma.org, 2009).
E38 n Cancer Nursing , Vol. 42, No. 4, 2019
A
Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.
Key components of the studies were collected including
authors, sample characteristics, instruments, psychometric prop-
erties, and characteristics of instruments (ie, generic or specific,
single symptom, or multisymptom). The data were systematically
organized, categorized, integrated, and synthesized.
n Results
The final review included 15 studies. Details of the selection
process are shown in the Figure.
Combining keywords resulted in the identification of 37
articles after removing 2 duplicates. Twenty-three articles were
removed because they did not meet inclusion criteria. Two
articles were identified by handsearching reference lists and met
Haugland and DeVon
inclusion criteria. All articles were published between 1995 and
2016; 13 used quantitative methods. Eleven reported obser-
vational studies,7Y11,13,14,16,26Y30 and 1 article reported the
validation of a NET-specific HRQoL instrument.31 One was a
longitudinal study.21 Two of the articles reported qualitative
studies, one used a life history strategy,13 and one used a phe-
nomenological approach.14 Eight articles included results on
HRQoL.7Y9,11,16,26,28,32,33 Ten studies reported mean duration
since diagnosis of NET to be 5.8years. The mean age of par-
ticipants across all studies was 59.5years. The studies included
patients from 4 countries; Norway, Sweden, Italy, and the
United States (Table).
Symptoms, Psychosocial Factors, and HRQoL
Four studies identified symptoms of fatigue, nausea/vomiting,
pain, dyspnea, and sleep disturbance.7,10,12,29 Ten studies re-
ported psychosocial factors including social support, anxiety,
depression, stress, distress, psychosocial interference with family
life, optimism, pessimism, and general self-efficacy.7Y12,21,27,28,32Y34
The most frequently reported psychosocial factors were anxiety
and depression, and the least frequently reported factors were
general self-efficacy, optimism, and pessimism. Pezzilli et al33
and Vinik et al5 found no association between aggressiveness of
the tumor and any of the HRQoL domains for NET patients.
Results showed that patients with GI-NET reported higher
scores for depression than healthy populations (PG.001; effect
size, 0.19)7 and that mild and moderate depression was negatively
associated with physical (P=.01) and mental (PG .001) com-
ponent scores of HRQoL.33 Whereas some studies report that
anxiety and depression are the most frequent psychosocial fac-
tors associated with NET, few studies report associations with
HRQoL. Supported by findings from the qualitative stud-
ies,13,14 both symptoms from the disease and adverse effects of
the treatment influence the patients" HRQoL and thus their
mood. However, how the patients coped with the stresses of an
NET diagnosis varied. One study reported that general self-
efficacy was positively associated with HRQoL (" =0.016).11
Optimism was another concept found to predict emotional (r =
0.38, PG.05) and mental (r = 0.47, PG.001) health.27
n Discussion
Our findings identified variability in the symptoms of fatigue,
nausea/vomiting, pain, dyspnea, and sleep disturbance.7,9,10,12,29
These findings may be attributed to differences in site and
aggressiveness of the tumor, the degree of metastases, tumor
burden, reduced physical functioning, and time since diagnosis5
and treatment.3 In addition, because the length of time since
diagnosis varied across the studies, it is possible that some patients
had developed a more advanced disease whereas others had a
more favorable disease course. Studies have demonstrated a neg-
ative association between symptoms and HRQoL.29
Patients with GI-NET usually present with an advanced
disease at the time of diagnosis and are therefore generally
considered to be incurable. The generic Short Form-36 (SF-36)
Symptoms, Psychosocial Factors, and HRQoL in NET Patients
Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.
questionnaire was used in most studies reviewed. The SF-36
assesses dimensions of quality of life in 8 subscales, which can
be transformed into mental and physical components.
Health-related quality of life measured with SF-36 showed
lower scores for patients compared with healthy people,7,9,11,16,35
and cancer-specific measured QoL was fairly equal to that of
healthy people.8,10,27Y29,32 In addition, the high levels of HRQoL
were due to factors such as tailored treatment, satisfactory sup-
port from the healthcare system, social welfare programs, and
governmental regulations for sick leave. In addition, short-term
inpatient rehabilitation that included physical exercise and
counseling improved HRQoL. Another explanation for higher
versus lower levels of HRQOL in the reviewed articles may be
the fact that the discomfort in joints and muscles, dry skin and
mucous membranes, flushing, and pain in the abdomen are
specific symptoms for NET. These symptoms are known to
result from the carcinoid tumor and/or can be adverse effects
from interferon treatment and thus may be captured by a NET-
specific measure but not by a generic measure.
Strengths of the Studies
In some studies, rigorous control of possible confounders such
as status of NET, specific drugs and treatment, and NET-
specific symptoms was undertaken.1,9,12,33 In 1 study, a small
sample yielded statistically significant findings, suggesting large
effect sizes.33 The studies included in this analysis were geo-
graphically diverse (United States and Europe), and several stud-
ies were longitudinal,8,10,12,28,29,35 providing an opportunity to
analyze change in the variables of interest over time.
Limitations
This integrative review included studies using different designs,
heterogeneous populations, and multiple measures across
cultures. We only included articles that measured psychosocial
factors, symptoms, self-efficacy, and HRQoL and do not know
whether any of these factors were associated with concomitant
comorbid conditions. In addition, lack of standardized instru-
ments hindered comparisons across studies. Similar to studies
reviewed by Martini et al1 in their systematic review of quality
of life in patients with gastroenteropancreatic NETs and by
Jim6nez-Fonseca et al15 in their review of HRQoL in well-
differentiated metastatic gastroenteropancreatic NETs, several
of the studies in this review did not meet basic quality criteria.
Limitations included small sample sizes,21 cross-sectional mea-
sures,9,11,16,29,33 lack of gender balance,7,9,12,13,29 information
on the statistical approach for handling missing data,7,11,12 and
the protocols for collecting data.7 Studies with limitations were
included because so few high-quality studies were available and
to allow readers to evaluate the validity of findings.
n Summary
Results indicate that patients with NET experience fatigue,
nausea/vomiting, pain, dyspnea, sleep disturbance, anxiety,
Cancer NursingA, Vol. 42, No. 4, 2019 n E39
 Table & Study and Patient Characteristics
Study Characteristics Patient Characteristics

Sample
Author and Size, n Sampling Age at Diagnosis Time Since Quality of Life
Location Aim Design (Male) Method Inclusion Criteria Measures (Mean/Range), y Diagnosis, y Score (SD)

A
Pezzilli et al,33 Assess the PROs Cross-sectional 44 (21) Consecutive pts & Confirmed PNETs SF-12 61 T 10.3 NR PCS, 44.7 (11.0)
(2009) of PNET pts admitted to & Admitted
outpatient outpatients from
clinic January-April 2009
Italy STAI Y-1 MCS, 42.4 (13.0)
and Y-2,
12

E40 n Cancer Nursing , Vol. 42, No. 4, 2019

GHQ-12
BDI-II
Pezzilli et al,9 Assess the PROs of Cross-sectional 51 (18) Consecutive pts & Confirmed PNET SF-36 61 T 9.8 5.8 T 5.4 PCS, 46.5 (10.3)
(2010) NETs of the ileum admitted to outpatients
outpatient clinic & January-April 2009
Italy GHQ-12 MCS, 45.9 (10.8)
STAI Y-1
and Y-2
BDI-II
Beaumont et al,7 Evaluate the HRQoL of Cross-sectional 653 (222) Email invitation & Diagnosed SF-36 57 T 2 4 (range, PF, 41.4 (12.7)
(2012) pts with NET and from NET with NET PROMIS 0Y3.8)
associations with patient support
demographic and organization
clinical factors
United States RF, 39.6 (13.2)
BP, 45.9 (11.5)
GH, 38.4 (11.8)
MH, 48.8 (10.7)
RE, 43.8 (13.0)

Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.

SF, 45.8 (12.2)
VT, 42.3 (12.8)
Haugland et al,16 Characterize HRQoL in Cross-sectional 196 (97) Letter of invitation to Q18 y SF-36 65 (range, 33Y85) 4.8 (range, PF, 87.3 (19)
(2009) a nationwide sample all Norwegian pts & Diagnosed with General 0Y23)
of pts with NET GI-NET Self-efficacy
compared with the & Norwegian speaking/ ISEL
general Norwegian writing IES
population & Not cognitively
impaired
& Not terminally ill

Haugland and DeVon

(continues)
 Table & Study and Patient Characteristics, Continued
Study Characteristics Patient Characteristics

Sample
Author and Size, n Sampling Age at Diagnosis Time Since Quality of Life
Location Aim Design (Male) Method Inclusion Criteria Measures (Mean/Range), y Diagnosis, y Score (SD)
Norway RP, 77.7 (37)
BP, 74.2 (26)
GH, 78.8 (20)
VT, 60.9 (20)
SF, 86.8 (21)
RE, 84.9 (31)
MH, 80.3 (15)
Haugland Test multifactorial path Cross-sectional 196 (97) Letter of invitation Q18 y SF-36 65 (range, 33Y85) 4.8 (range, PCS, 39.6 (11)
et al,11 models to evaluate the to all Norwegian & Diagnosed with GI-NET 0Y23)
(2016) relationships of general pts & Norwegian speaking/
self-efficacy, social writing
support, cancer-related & Not cognitively impaired
stress, and HRQoL & Not terminally ill
Norway General MCS, 45.9 (11)
Self-efficacy
ISEL

Symptoms, Psychosocial Factors, and HRQoL in NET Patients

Haugland Evaluate changes in Longitudinal 37 (17) Letter of invitation & Diagnosed with GI-NET SF-36 60 (range, 36Y80) T1 (range, PCS, 55.2 (NR)
et al,21 stress, general pilot study to all Norwegian & Q18 y 1Y12 mo)
(2013) self-efficacy, and pts diagnosed & Norwegian speaking/
HRQoL in pts between 2005 writing
with NET after and 2007 & Not terminally ill
an educational & Not cognitive impaired
intervention & Not radically surgery
treated
& Not participated

Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.

& An education program
Norway Pretest-posttest General MCS, 43.1
Self-efficacy (NR)
ISEL
IES
Larsson et al,29 To investigate HRQoL, Cross-sectional 99 (60) Letter of invitation & Informed about their EORTC 4.5 (range, 0Y23.5) 59 (20Y82) PF, 77 (24)
(1999) anxiety, and study to pts who were cancer diagnosis ; being QLQ-C30
depression treated with referred to the treated with INF and/or
somatostatin analog Department of somatostatin
& Swedish speaking

Cancer NursingA, Vol. 42, No. 4, 2019

n
(continues)

E41
 Table & Study and Patient Characteristics, Continued
Study Characteristics Patient Characteristics

A
Sample
Author and Size, n Sampling Age at Diagnosis Time Since Quality of Life
Location Aim Design (Male) Method Inclusion Criteria Measures (Mean/Range), y Diagnosis, y Score (SD)
Sweden VAS used on selected RF, 71 (29)
important aspects EF, 77 (22)
of HRQoL and CF, 80 (20)
satisfaction with SF, 79 (26)

E42 n Cancer Nursing , Vol. 42, No. 4, 2019

selected aspects of QL, 66 (22)
HRQoL
Larsson et al,32 Investigate HRQoL in A follow-up 119 (67) Letter of invitation & Pts treated for EORTC QLQ-C30 10 (range, 5Y30) 61 (range, PF, 79 (25)
(1999) long-term survivors of survey to pts who were GI-tumor in the 26Y85)
NET with or without referred to the last 5 y
ongoing treatment Department of & Swedish speaking
Endocrine & Good mental
Oncology, Uppsala condition as
determined by
a physician
Sweden HADS RF, 77 (29)
EF, 81 (21)
CF, 82 (22)
SF, 78 (25)
QL, 65 (24)
Larsson et al,8 Investigate HRQoL, 1-y follow-up 24 (14) Letter of invitation & Histopathological EORTC QLQ-C30 0.25 (range, 0Y12) 62 (range, PF, 70 (22)
(2001) anxiety, and depression survey to pts referred to verified midgut 25Y81)
in pts with midgut the Department NET

Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.

carcinoid during 1 y of Endocrine & Scheduled for
of follow-up Oncology, treatment of
Uppsala !-interferon and/
or somatostatin
Sweden HADS RF, 76 (25)
EF, 80 (15)
CF, 87 (14)
GH/QOL,
63 (13)
SF, 78 (24)

(continues)

Haugland and DeVon

 Table & Study and Patient Characteristics, Continued
Study Characteristics Patient Characteristics

Sample
Author and Size, n Sampling Age at Diagnosis Time Since Quality of Life
Location Aim Design (Male) Method Inclusion Criteria Measures (Mean/Range), y Diagnosis, y Score (SD)
FrPjd et al,10 To add knowledge Follow-up survey 36 (19) Those referred to & Q18 y EORTC QLQ-C30 60 NR PF, 79 (22)
(2007) about HRQoL the Department & Swedish speaking
and psychosocial of Endocrine & Not cognitively
function among Oncology, impaired
pts with carcinoid Uppsala, for the
tumor after first time between
diagnosis 2001 and 2003
Sweden HADS RF, 69 (35)
Aspects of distress EF, 82 (19)
CF, 84 (18)
SF, 79 (27)
QL, 58 (25)
Berglund Study QoL in pts living Follow-up survey, 29 (16) At-follow ups at & All Swedish pts SF-36 Range, 28Y77 Range, 0Y17 PF, 75.8 (22.5)
et al,27 with hereditary consecutively hospital diagnosed with
(2003) tumor syndrome, enrolled MEN1
MEN1

Symptoms, Psychosocial Factors, and HRQoL in NET Patients

Sweden HADS RP, 68.1 (42.2)
IES RP, 68.1 (42.2)
LOT BP, 61.4 (25.2)
GH, 53.6 (17.3)
VT, 60.0 (13.2)
SF, 74.0 (24.0
RE, 75.0 (38.8)
MH, 72.6 (19.9)
Spolverato Assess whether QoL Cohort, before and 85 (45) Treatment of & Pts undergoing EORTC QLQ-C30/ 55 (range, 47Y61) NR Measured as

Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.

et al,12 after therapy for after surgery NELM between surgery for GI.NET-21
(2015) NELM improved 1998 and 2013, NELM
over a range of alive in March
self-reported 2014
symptoms and
physical, emotional,
and social functioning
United States 1. None to mild
2. Moderate
3. Severe to

Cancer NursingA, Vol. 42, No. 4, 2019

extreme

n
(continues)

E43
 Table & Study and Patient Characteristics, Continued
Study Characteristics Patient Characteristics

Sample
Author and Size, n Sampling Age at Diagnosis Time Since Quality of Life
Location Aim Design (Male) Method Inclusion Criteria Measures (Mean/Range), y Diagnosis, y Score (SD)

A
Frojd et al,28 Investigate whether Cohort 36 (19) Referred to the & 918 y EORTC 60 (10) NR PF, 79 (22)
(2009) specific aspects Department of & Not cognitively QLQ-C30
of the initial Endocrine impaired
consultation and Oncology for
pts" satisfaction the first time
with doctor"s care between 2001
are related to and 2003

E44 n Cancer Nursing , Vol. 42, No. 4, 2019

HRQoL, anxiety,
and depression
among NET pts
Sweden EF, 72 (19)
SF, 84 (18)
SF, 79 (27)
Miconi et al,13 Develop an extended Qualitative/ 21 (8) 21 letters presented Diagnosed with NR Range, 36Y74 Range, 2Y16 NR
(2015) understanding storytelling in an Italian NET
of the pts" book
experiences and
struggles, as well
as their solution to
a common problem
Italy Letters from pts
Stromsvik Build knowledge Qualitative study/a 29 (16) Recruited at yearly & Diagnosed with NR 28Y55 NR NR
et al,14 about this patient phenomenological follow-ups at an MEN1
(2007) group to provide approach NET ward at
optimal care Uppsala University
Hospital

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Norway 1-y follow-up Most of the pts have found
a way of dealing with
the condition in their
everyday lives but still
have to cope with
physical and physiological
pain, lack of control of
the situation, and the
uncertainty regarding
the future.

Haugland and DeVon

(continues)
 Table & Study and Patient Characteristics, Continued
Study Characteristics Patient Characteristics

Author and
Location
Davies et al,31 Develop a module for pts Questionnaire
(2006)
Ireland, Sweden,
United Kingdom,
the Netherlands,
Sample
Size, n Sampling Age at Diagnosis Time Since Quality of Life
Aim Design (Male) Method Inclusion Criteria Measures (Mean/Range), y Diagnosis, y Score (SD)
174 (85) NR & Pts with histologically NR 53 (range, 17Y80) NR NR
with NET of gut to development proven metastatic carcinoid
supplement the core & NETs with carcinoid
questionnaire, the & Primary anywhere in the gut
EORTC QLQ-C30 or pancreas, bronchogenic
carcinoid
& Liver metastasis
& Pts without another
concurrent malignancy
& Pts not confused and able
to participate in an
interview study
& Written informed consent

Symptoms, Psychosocial Factors, and HRQoL in NET Patients

Germany, Italy
Abbreviations: BDI-II, Beck Depression Inventory-II; BP, bodily pain; EORTC QLQ-C30, European Organization for Research and Treatment of Cancer Quality of Life QuestionnaireYC30; GH, general health; GHQ-
12, 12-item General Health Questionnaire; GI-NET, gastrointestinal NET; GI.NET-21, gastrointestinal neuroendocrine tumor 21; HADS, Hospital Anxiety and Depression Scale; HRQoL, health-related quality of life;
IES, Impact of Event Scale; ISEL, Interpersonal Support Evaluation List; LOT, Life Orientation Test; MCS, mental component score; MEN1, multiple endocrine tumors type 1; MH, mental health; NELM, neuroendocrine liver
metastasis; NET(s), neuroendocrine tumor(s); NR, not reported; PCS, physical component score; PF, physical functioning; PNET(s), pancreatic neuroendocrine tumor(s); PROMIS, Patient-reported Outcomes Management
Information System-29; PROs, patient-reported outcomes; pts, patients; RE, role emotional; RP, role physical; SF, social functioning; SF-12, Short Form-12; SF-36, Short Form-36; STAI Y-1 and Y-2, State Trait Anxiety Inventory;
VAS, visual analog scale; VT, vitality.

Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.

Cancer NursingA, Vol. 42, No. 4, 2019
E45 n
depression, stress, psychosocial interference with family life,
and optimism/pessimism. Results also indicate that anxiety,
higher depression, and stress influence HRQoL negatively.
More social support, self-efficacy, and optimism are associ-
ated with better HRQoL.
Longitudinal international studies of NET-related symp-
toms and psychosocial factors associated with HRQoL that
are adequately powered and adjust for potential confounders
are needed to confirm evidence on psychosocial factors in-
fluencing HRQoL in patients with NET. Evidence of these
associations may facilitate the design and testing of effective
interventions to reduce symptoms and improve HRQoL for
NET patients. Rigorous findings on symptom and psycho-
social status will enable nurses to better provide evidence-
based care to patients with NET.
References
1. Martini C, Gamper EM, Wintner L, et al. Systematic review reveals lack
of quality in reporting health-related quality of life in patients with
gastroenteropancreatic neuroendocrine tumours. Health Qual Life Out-
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