Summary
Introduction:
Palliative care aims to improve the quality of life (QOL) of patients with lifethreatening illness through early assessment and treatment of their symptoms and problems
(S/Ps). Several studies have investigated the symptomatology of patients at admittance to
specialized palliative care (SPC) in Denmark through validated questionnaires, but little
evidence is available on which other symptoms not covered by standardized methods, patients
may experience. In contrast to Denmark, evidence on the symptomatology of patients admitted
to palliative care in Chile is sparse, and no instruments have been validated for this purpose.
Aims:
This PhD thesis is based on data collected from all SPC units registered in the Danish
Palliative care Database (DPD), and from four SPC services in Chile. The aim of Paper I was to
investigate the nature, prevalence, and severity of S/Ps reported using the Write In three
Symptoms/Problems instrument (WISP) by advanced cancer patients admitted to SPC in
Denmark. Paper II aimed to investigate whether sociodemographic variables, diagnosis and type
of first contact were associated with S/Ps reported on WISP at admittance to SPC in Denmark.
Paper III aimed to investigate the content validity of the EORTC QLQ-C15-PAL as evaluated by
patients and health care professionals (HCPs) from palliative care services in Chile, replicating
the methods used to abbreviate the EORTC QLQ-C30 among European patients in palliative
care. The aim of Paper IV was to examine the symptomatology of advanced cancer patients at
admittance to palliative care in Chile and to investigate how this symptomatology changed
during the first month and whether these changes were associated with patient characteristics.
Participants:
Paper I–II included advanced cancer patients admitted to SPC in Denmark who
completed the EORTC QLQ-C15-PAL and reported S/Ps on WISP. Paper III included
outpatients receiving palliative care in Chile and HCPs whose main occupation was in palliative
care. Paper IV included outpatients with advanced cancer who completed the EORTC QLQC15-PAL, WISP and the Hospital Anxiety and Depression Scale (HADS) at admittance to
palliative care in Chile.
Methods:
In Paper I, S/Ps reported on WISP were categorized qualitatively, and their prevalence
and severity were estimated. In Paper II multiple logistic regressions were used to investigate
associations between patient characteristics and the most prevalent additional S/Ps reported on
WISP. In Paper III, interviews were conducted to evaluate the importance of the EORTC QLQC30 items for assessing the outcome of palliative care in terms of their relevance,
appropriateness, relative importance and breadth of coverage. In Paper IV, the prevalence and
severity of S/Ps reported at admittance were estimated. Changes in S/P scores during the first
month were estimated overall and according to patient characteristics. Multiple linear regressions
were used to investigate the associations between patient characteristics and changes in S/P
scores.
Results:
Paper I found that among the 5,447 patients who completed the EORTC QLQ-C15-
PAL at admittance to SPC in Denmark, 1,778 reported a total of 2,796 S/Ps on WISP. Of these
S/Ps 63.6% were additional, i.e. not included in the EORTC QLQ-C15-PAL, 24.8% were S/Ps
already included, and 11.7% were diagnoses or responses that could not be coded. Edema,
dizziness, cough and sweats were the most prevalent additional S/Ps. Of the S/Ps, 85% were
reported as moderate to severe. Paper II found that the highest probability of reporting any
additional symptom/problem was seen for patients with younger children compared to patients
with older children, and for patients living with someone compared to those living alone. In
addition, patients with younger children, patients living with someone, outpatients and patients
with cancer in prostate, colorectal and in female genital organs were more likely to report some
of the ten prevalent additional S/Ps. In Paper III, 48 patients and 35 HCPs selected pain, physical
functioning, sleeping difficulties, emotional functioning, nausea/vomiting, fatigue, social
functioning, lack of appetite, role functioning and constipation as the ten most important
dimensions to be used to assess the outcome of palliative care. Qualitative data detected
linguistic problems in the dyspnea and constipation items, as well as identified ten relevant
issues not included in the questionnaire. Paper IV found moderate to severe levels of S/Ps in 201
patients at admittance to palliative care in Chile. Fatigue, pain and sleeping difficulties were the
most prevalent S/Ps and the S/Ps with the highest mean scores. After the first month of palliative
care, emotional functioning, pain, sleeping difficulties, constipation and anxiety improved
significantly. Residence, cohabitation status, diagnosis and current antineoplastic treatment were
associated with changes in S/P scores.
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Conclusions:
The WISP instrument increases the recognition of symptoms by combining
standard methods with individualization. A number of associations were found between the
clinical and sociodemographic variables and overall reporting of S/Ps on WISP as well as the
occurrence of the specific S/Ps. The EORTC QLQ-C15-PAL had good content validity for
evaluation of symptoms and QOL of patients receiving palliative care in Chile. Moderate to
severe levels of S/Ps were found in Chilean patients at admittance to palliative care. Several S/Ps
improved significantly during the first month of palliative in Chile, and certain patient
characteristics were associated with changes in S/P scores.
Read the thesis: Rojas-Concha L, Symptomatology of advanced cancer patients
admitted to palliative care in Denmark and Chile by clicking here