Research Article
Physical, Emotional and Spiritual Well-Being, Dignity and Hope in Adult Patients with Solid and Hematologic Malignancies, on Cure or Follow-Up
Carla I Ripamonti1*, Loredana Buonaccorso2, Alice Maruelli3, Guido Miccinesi4
1Oncology-Supportive Care in Cancer Unit, Department Onco-Ematology, Fondazione IRCCS, Istituto Nazionale dei Tumori, Italy
2AMO, Association of Oncological Patients from nine towns and villages located in the Northern area of Modena, Italy
3Psychology Unit, LILT and Center for Oncological Rehabilitation-CERION of Florence, Italy
4Clinical Epidemiology Unit, ISPO-Institute for the Study and Prevention of Cancer, Florence, Italy
*Corresponding author: Carla Ida Ripamonti, Oncology- Supportive Care in Cancer Unit, Department Onco-Ematology, Fondazione IRCCS, Istituto Nazionale dei Tumori, Italy
Published: 26 Apr, 2017
Cite this article as: Ripamonti CI, Buonaccorso L, Maruelli
A, Miccinesi G. Physical, Emotional
and Spiritual Well-Being, Dignity and
Hope in Adult Patients with Solid and
Hematologic Malignancies, on Cure or
Follow-Up. Clin Oncol. 2017; 2: 1268.
Abstract
Introduction: In oncological setting, the assessment of physical/emotional symptoms and above all
of existential/religious needs and resources, hope and dignity are rarely performed in the routine
clinical practice. Moreover, comparative assessments of patients with Solid Cancers (SC) vs. those
with Haematological Malignancies (HM) are lacking.
Patients and Methods: We analyzed data collected in 2 similar cross-sectional studies of consecutive
patients with SC or HM on cure or follow-up regarding the presence and intensity of physical/
emotional symptoms, religious needs and resources, level of hope and dignity–related distress. We
used the Edmonton Symptom Assessment System (ESAS), System of Beliefs Inventory (SBI_15R),
Hert Hope Index (HHI) and Patient Dignity Inventory (PDI).
Results: 289 patients with SC and 169 with HM were involved with a mean age of 61 and 58 years
respectively (p=.012); 56% of patients with HM vs. 43% with SC were male (p=.009). KPS ≥80 was
above 90% in both groups, and 49% of the HM as well as the SC patients were on active treatments;
18% of the HM patients had received psychological support vs. 29% SC patients (p=.007). No
significant differences were observed between the two groups regarding physical/emotional
symptoms, dignity – related distress and the presence of hope, whereas religious resources were
higher among patients with solid cancer (p=.036). Among HM patients, in comparison with the
phase of diagnosis hope score was significantly lower during the treatment phase (-3.3; 95% CI: -5.6;
-1.0), and in case of relapse/metastases (-6.6; 95% CI: -11.6; -1.6).
Conclusion: SC and HM patients don’t differ much in their physical, emotional and spiritual needs,
even if HM patients seem to be more vulnerable to losing hope as the disease progresses. More
important, HM patients may lack sufficient patient support.
Keywords: Physical/emotional symptoms; Existential/religious needs/resources; hope; Dignity related distress; Solid cancer; Haematological malignancies
Introduction
The World Health Organization suggests the Health Care Professional to perform
multidimensional evaluations of the presence and intensity of emotional and physical symptoms
in cancer patients starting from the diagnosis [1], because early identification of suffering due to
cancer and its treatments can be addressed at the earliest opportunity and when necessary referred
to specialists. The psychosocial domain should be integrated into the routine cancer care to improve
the possibility of cognitive and emotional processing for the patients and also for their families [2]. Scientific evidence exists to recommend supportive psychotherapy as a valid therapeutic intervention
[3]. It is often recommended a two-phase process for the assessment of the psychological unmet
needs, as a case at the screening through standardized tools identifies the level of symptoms (above a
certain cutoff) without providing a diagnosis [4]. Although data of the literature have demonstrated
the utility of simple screening tools to assess the symptoms and to activate the specific services, as
support therapies to manage pain and toxicities, psychological support [4,5] and group therapy [6,7], the routinely assessment of the symptoms and the needs, the
dignity-related distress, the resources (religiosity, hope) of the patients
undergoing oncological therapies with curative or palliative intent or
during follow-up period both in patients with solid cancer or with
hematological malignancy is still few. One possible explanation is the
lack of proper education in symptom assessment and management
and the lack of simple, not time consuming, validated in the own
language, assessment tools to use in the daily clinical practice in a
context of a structured conversation. Further difficulties come from
the lack of adequate training in communication skills and processes
for health professionals [8,9]. A recent Italian study showed that
the cancer patients that used complementary therapies reported
more unmet needs about the quality of the relationships with health
professionals [10].
A revision of the literature extracted from 21 multi-national
studies in a pooled sample of 4,067 patients with solid or haematological malignancies undergoing active cancer treatments
and assessed by means of different assessment tools, showed that the
most prevalent symptoms were fatigue, irritability, disturbed sleep,
outlook, unspecified pain, dry mouth, anorexia/appetite changes,
dyspnea, difficulties in concentration/remember, numbness tingling,
bowel changes, nausea, dizziness, dysphagia, sexual dysfunction,
nocturia [11]. Contrary to data reported in the past literature, also the
haematological patients refer physical and emotional distress during
all phases of disease [12-14]. In particular leukemia patients may
suffer from moderate and sever physical pain and emotional distress,
depression and hopelessness during all clinical phases [15,16].
However comparative data are not available on the differences
between the presence and intensity of the symptoms in the two
groups of patients with SC or HM. The aim of this study is to compare
the patients with solid and haematological malignances on cure or on
follow-up, in order to investigate the differences in prevalence of the
patients reported physical and emotional symptoms, dignity-related distress, religious needs and resources such as hope.
Table 1
Table 1
Demographic and clinical characteristic of patients with Solid Cancer (SC) and Haematological Malignancies (HM). Mean value and (DS), or N and (column %).
Table 2
Table 2
Physical and emotional symptoms (moderate/severe), and religious needs/resources in patients with Solid Cancer (SC) or Haematological Malignancies (HM).
Mean value and (DS), or N and (column %).
Patients and Methods
Patient population
In this study we report a secondary analysis of two different
cross-sectional studies, conducted in 2012 and 2014 respectively,
with the same methodology. The patients enrolled were cared
for by Supportive Care in Cancer Unit of Fondazione IRCCS,
Istituto Nazionale dei Tumori of Milan, and Centre of Oncological
Rehabilitation-LILT, CERION of Florence. The inclusion criteria
were: 1. Age >18 years; 2. Ability to read and speak Italian; 3. On
active oncological treatments or in follow-up; 4. Life expectancy >6
months; 5. Karnofsky Performance Status (KPS) ≥70; 6. No severe
symptoms which could cause discomfort during the compilation of questionnaires; 7. Outpatients; 8. Written informed consent. Patients with signs/symptoms of cognitive impairment were excluded from
the study.
By means of a questionnaire ad hoc, basic information was
collected comprising of age, gender, civil status, education,
employment, religiousness (churchgoer, believer non churchgoer,
non-believer), Karnofsky Performance Status (KPS), clinical
variables including phase of the disease (diagnosis/treatment, follow
up/rehabilitation, metastasis/relapse), primary tumour, oncological
treatment received in the last 3 months, previous referral to a
psychologist. Approval was obtained from the ethics committees
of the participating centers. Measures Of all patients, we analyzed
the presence and intensity of physical and emotional symptoms,
the religious needs/resources, the hope and dignity related distress, through the following questionnaires validated in Italian language.
Edmonton symptom assessment scale
(ESAS) [17] validated in the Italian language [18]. We considered
the intensity of physical symptoms as moderate when the intensity
was from 4 to 6 of the numerical scale and severe when the intensity
was from 7 to 10 [18]. Moreover, moderate anxiety or depression
reported through the corresponding ESAS items (cutoff=4) has been
used as a screening tool for anxiety and depression [19].
System of belief inventory
(SBI-15R), developed by Holland [20], an instrument of selfcompilation,
consisting of 15 questions (items) which are grouped
in 2 sizes: the first consists of 10 items relating to religious beliefs
and practices, the second consists of 5 items, relating to the social
support provided by the religious community. The score of each item
consists of a four-level verbal scale ranging from "strongly disagree"
to "strongly agree" or "Never" to "Always". The SB-15R total score
ranges from 0 to 45, with higher values indicating higher levels of
religiousness. It was recently validated in the Italian version [21].
Herth hope index
(HHI) developed by Herth is a tool used to measure the cognitive,
affective, behavioral, temporal, and contextual dimensions of patients’
level of hope in a hospital setting [22]. HHI consists of 12 items on a
4-point Likert Scale (strongly disagree, disagree, agree and strongly
agree). The scale has three subscales: inner sense of temporality and
future, inner positive readiness, and interconnectedness with self
and others. A high score on the HHI suggests that patients have
subsequently higher levels of hope. The HHI Italian version has been
validated with 266 patients, which had either solid or hematologic cancer during active oncological treatment and supportive care [23].
The results of the validation show the unidimensionality and the good
reliability indexes of the Italian version of HHI, and the practicality of
its use with cancer patients at non-advanced stages.
Patient dignity inventory (PDI)
Composed of 25 items to assess the dignity-related distress. Each
item was rated on a five-point scale (1. Not a problem; 2. A slight
problem; 3. A problem; 4. A major problem; 5. An overwhelming
problem). Five-point scales of this nature have been reported most
reliable on 6 measurements of attitude-judgment, with response
categories above five not yielding significant additional discrimination.
High PDI score is related to high dignity related distress [24]. The
Italian validation of PDI showed the one-dimensionality of the
instrument [25].
Statistical analysis
Usual univariate descriptive statistics are presented. To test the
differences between solid and haematologic cancer patients, chi square
or unpaired t test, according to the nature of the variable considered,
were performed. P-values <0.05 were considered significant. The
association of hope with the other collected variables, such as age, sex,
spirituality, psychological support, problems with dignity and phase
of disease was studied separately in the two groups of SC and HM,
through simple and multiple regression models. All the analyses were
performed using the statistical package STATA 12.1.
Table 3
Table 3
Crude and adjusted association, obtained through simple and multiple linear regression models, between hope (HHI score) and phase of disease, religious
needs/resources (SBI score), problems with dignity (PDI score), psychological support, sex and age class; stratified by type of cancer: Haematologic Malignancies
(HM) or Solid Cancer (SC). Regression coefficient and (95% C.I.).
Results
Table 1 shows clinical characteristics of patients with solid
(N=289) and haematological (N=169) malignances in different
phases of diseases. The patients had a mean age of 60 years (range 19-89), 47.9% were male. Most of the hematological patients were male
(55.9% vs. 43.2%; p-value=.009), and on average they were younger
than SC patients (57.8 vs. 61.1 years old, p=.012). The 70% of the
patients lived with the partner, 19% had a high level education. Most
of the patients were retired (47%), more often among SC patients
(50.7% vs. 41.4%, p=.043). Regarding religiousness, the 14% were
non believer, 45% believer and churchgoer, the rest believer non
churchgoer. In respect to patients with HM, SC patients received
more psychological support (29% vs. 18%, p=.007). Most of the
patients had KPS ≥80 (only 4.5% had KPS = 70). Half of the patients
were on active treatments (49%). Only 6.8% of all patients presented
relapse or metastases. Table 2 shows the percentage of patients with
physical and emotional symptoms of moderate to severe intensity
and the average score of religiosity, hope, and dignity related distress.
The 53% of the patients reported fatigue, 35% drowsiness, 26% pain,
25% anorexia, 13% nausea, 10% dyspnoea, 25% anxiety and 17%
depression, 29% sense of not well-being. We didn’t find any significant
differences between the two groups of patients about physical/
emotional symptoms. As concerns the religious resources, the SBI
score was higher in our sample among SC patients than among HM
patients (25.4 vs. 22.4 respectively, p =.036; max score=45), whereas
the levels of hope and dignity related distress (this last measured on
159 subjects only) were not significantly different in the two groups,
with an average score of 37 for hope (max score=48) and 50 for dignity
problems (max score=125). Table 3 Simple linear regression models,
fitted separately among SC or HM patients to show the association
between hope and selected covariates (phase of disease, age class, sex,
religious needs/resources score, problems with dignity, psychological
support), show interesting similarities between the two groups,
and some differential results. Whereas SC patients had higher hope
score (+2.4) at the entry in a treatment phase than at diagnosis, the
opposite (-3.5) occurred among HM patients. After adjustment for
the other covariates presented in table but PDI (due to collinearity),
the result was no more statistically significant among SC patients,
whereas among HM patients hope score was still significantly lower
(-3.3) during the treatment phase than at diagnosis, and in case of
relapse/metastases (-6.6). Age showed significant association with
hope among SC patients: people older than 65 years had a statistically
significant lower level of hope than those younger than 51 after
adjustments. Sex did show any association with hope neither at the
crude analysis nor after adjustment.
Religious needs/resources were positively associated with hope in
both groups of patients even after adjustment; the opposite (negative
association) was true for dignity related distress and psychological
support at the crude analysis only.
Discussion
Our study shows that fatigue, drowsiness, the sense of not wellbeing,
anorexia and pain of moderate to severe intensity were present
and overlapped in patients with solid cancer as well as in those with
hematological malignancies. Also the emotional symptoms like
anxiety and depression were similar among the two groups of patients.
However data of literature shows that the relief of pain and other
symptoms as psychological and spiritual suffering were frequently
under-recognized in patients with haematological malignancies
[26-28]. A recent review on psychosocial needs among patients who
received a diagnosis of cancer revealed that these aspects of suffering
were underestimated among HM patients in comparison with SC
patients [29]. HM patients fear of relapse, fear of death in a curative regimen, show specific social needs due to the change occurred in the
familiar system after the occurrence of the disease and information
needs as much as SC patients [28,29]. Preoccupation with death is a
predictor of psychological distress in patients with HM [30]. Among
HM survivors it has been shown high level of psychological distress
and financial worries, together with the perception of having their
own needs underestimated by health professionals [31]. The higher
psychological support received in our sample by SC patients may
be due also to the higher prevalence of female and of retired people,
given that women are more able to feel psychological needs and
retired people have more mental space to feel psychological needs
and more time to look for psychological support [32,33]. This result
strengthens the importance of giving more access to psychological
support for everyone after a cancer diagnosis and more attention
to communication processes in medical-patient relationships [34].
Patients who feel to be supported by good relationships with health
professionals tend to feel less need of specific psychological support,
as it has been shown in a recent study conducted in a Supportive
Care Unit [35]. We suggest that the decreased level of hope registered
among HM patients only, since diagnosis through the successive
phases of disease, might be due to the awareness of having a disease
spread all over the body, whereas SC patients after diagnosis more
easily feel that the disease is centered somewhere in their body, so
more controllable through targeted treatment. Anyway, these results
show again the importance of careful monitoring the psycho-social
needs among these patients. Depression and Hopelessness was
reported in leukaemia patients [15]. Moreover, in patients with
acute leukaemia (a highly fatal condition characterized by a sudden
onset and a fluctuating disease course) depression was associated
with greater physical burden while hopelessness, measured by Beck
Hopelessness Scale, was present in 8.5% of the patients and was
associated with older age and lower self-esteem. Both were associate
with poorer spiritual wellbeing [16]. SC patients had higher level of
spiritual/religious resources according to SBI. This might be related
to the smaller percentage (borderline statistically significant) of
SC patients that were non-believer and maybe also to the higher
proportion of SC patients who received psychological support.
Religiosity was positively associated with hope, with a similar force,
in the two groups of patients. Only few data are available on the hope
of patients with SC and HM on cure or follow-up, during supportive
care therapies to manage toxicities due to oncologic therapies, and
they confirm the positive association between religiosity and hope
[35]. Among SC patients older age was negatively associated with
hope. It has been shown that having long-term projects influences
positively hope [22], therefore it may be that older patients have lower
level of hope when facing a cancer disease just due to the feeling of
can no more have long-term projects in any way, both for the old age
and for the disease, whereas younger patients can still use the longer
life-expectation to keep having long-term projects and hope [27,30].
No data of the literature are available on the dignity- related distress
in patients on cure or follow-up during supportive care to manage
toxicities- related to oncologic treatments. In our study dignity-related
distress was negatively associated with hope in a similar way in the two
groups. The clinicians can use standardized questionnaires to assess
the dignity related distress [22] and the sense of hope [24] in cancer
patients during all phase the disease [23,25]. No cut-off is indicated
to the correct us of these questionnaires: the questions want more to
open a dialogue useful to make the patient feel safe and to trust health
professionals who know better what is really important for him/her
[36]. Indeed critical passages in the course of the disease can be dealt with better if this dialogue on important personal preferences and
values has already been opened. The multidimensional assessment
of cancer patients, on physical, psychological, social and spiritual
(including hope and dignity) dimensions, in any phase of the disease,
made by well-trained health professionals, gives them the possibility
to understand and to facilitate the dynamic process of coping with the
disease, and to find out which ways are still viable for wellbeing, even
in the presence of a life-threatening disease, by controlling symptoms
and giving relevance to personal hope and personal dignity issues
[37,38]. A number of studies indeed showed that patients involved
in decision-making processes on care have higher compliance with
the suggested treatments and better coping with the disease, resulting
in higher level of wellbeing [6,34,39,40]. The main limitation of this
study is its cross-sectional design which provides only weak support
to the hypothesized direction of the described association. Moreover
the differing setting of care of SC and HM patients makes the
comparisons open to different interpretations, and the national size
of the study makes its results to be confirmed in other health systems.
Overall the results of our study suggest the need for early
assessment and management of physical and emotional symptoms,
spiritual/religious needs, level of hope and dignity–related distress,
psychosocial support, also for cancer patients who are on cure or
follow-up [41]. SC and HM patients have overlapping physical and
emotional symptoms. However it is possible that HM patients need
to be more supported in order to encourage hope during the phase
of cure and relapse. According the data of literature, in comparison
with other kind of cancer HM seem to be less supported, for instance
there is a lack of self-help materials and of systematic provision
of information and support groups for patients, which may be
associated with lower empowerment among these patients [34]. The
early multidimensional assessment and the related early psychosocial
support can improve the skills of coping among patients and their
families, in order to manage the emotional reactions to disease and
treatments, and to integrate the disease’s experience into the life plan
both during active therapy and when the patient enters into follow-up
or rehabilitation settings of care [33,41].
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