Qual Life Res
DOI 10.1007/s11136-014-0661-4
Measuring individual quality of life in patients receiving
radiation therapy: the SEIQoL-Questionnaire
Gerhild Becker • Constanze S. Merk •
Cornelia Meffert • Felix Momm
Accepted: 24 February 2014
Springer International Publishing Switzerland 2014
Abstract Results While the average HRQoL measured by the
Purpose Quality of life (QoL) is one of the most QLQ-C30 was 55.6, the average SEIQoL-Q index was
important outcomes in cancer care. Although a number of 59.6. The most important life domain was ‘‘physical
instruments to measure health-related QoL (HRQoL) exist, health,’’ followed by ‘‘emotional well-being’’ and ‘‘fam-
there are few suitable instruments to measure individual ily.’’ Patients attributed the highest level of satisfaction to
QoL. The best established instrument is the Schedule for ‘‘home/housing,’’ followed by ‘‘family’’ and ‘‘partnership.’’
the Evaluation of Individual Quality of Life (SEIQoL). The Male patients were shown to have a significantly better
disadvantage of this questionnaire is its use of semi- QoL than females. The SEIQoL-Q index correlates mod-
structured interviews, which are very time-consuming. The erately with the QLQ-C30 functioning scale ‘‘global
purpose of our study was to transform the SEIQoL into an quality of life’’ [r = .42 (p \ .001)].
economical instrument that can be used in clinical trials Conclusions According to our findings, the SEIQoL-Q
with large samples. appears to be a feasible and economical instrument for use
Methods We developed the SEIQoL-Questionnaire in quantitative research among cancer patients in different
(SEIQoL-Q) on the basis of the SEIQoL-Direct Weighting stages of their disease.
(SEIQoL-DW) by transforming the interview guide into a
written questionnaire. Patients (N = 1,108) in all three Keywords Quality of life Radiotherapy
phases of radiation treatment (first consultation, ongoing Advanced diseases Palliative care Cancer Oncology
irradiation, and aftercare) were asked to complete the
SEIQoL-Q and the European Organization for Research
and Treatment of Cancer QLQ-C30. Introduction
Cancer produces multiple distressing symptoms that affect
Gerhild Becker and Constanze S. Merk have contributed equally to not only functioning but also quality of life (QoL), espe-
this work. cially for patients in an advanced stage of the disease [1].
Achievements in modern medicine have increased the
G. Becker C. Meffert (&)
Palliative Care Research Group, Department of Palliative possibility of prolonging life among patients with incurable
Medicine, University Medical Center Freiburg, diseases, and one can expect the number of patients in need
Robert-Koch-Str. 3, 79106 Freiburg, Germany of end-of-life care to rise [2]. In addition to traditional
e-mail:
[email protected] outcome parameters such as survival or local tumor con-
C. S. Merk trol, it is becoming more and more necessary to investigate
Department of Psychiatry and Psychotherapy, University QoL in clinical trials. As health care shifts from a bio-
Medical Center Hamburg-Eppendorf, Hamburg, Germany medical to a biopsychosocial paradigm [3], a majority of
clinical research scientists insists that QoL is a valid and
F. Momm
Department of Radiation Oncology, Ortenau Medical Center important aspect of a patient’s condition [4]. However,
Offenburg-Gengenbach, Offenburg, Germany there is presently neither a consensus on how to define QoL
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in patients with progressive incurable diseases nor how to considerable risk of being overstrained by filling in the
measure it [5]. We dispose of a number of instruments to questionnaire were not included.
measure health-related QoL (HRQoL) for curatively trea- Patients were asked to complete the SEIQoL-Q and the
ted cancer patients, such as the ‘‘European Organization for QLQ-C30. Physicians collected patients’ sociodemo-
Research and Treatment of Cancer (EORTC) QLQ-C30’’ graphic data and made main diagnoses. We aimed at sur-
[6] or the ‘‘Functional Assessment of Chronic Illness veying at least 1,000 patients in order to gain a
Therapy (FACIT)’’ [7]. Yet, there are few suitable instru- representative sample of all patients in contact with the
ments to measure individual QoL despite its importance in radiotherapy department.
cancer care and, above all, in palliative care [8, 9].
The best established instrument to evaluate individual Ethics
QoL is the Schedule for the Evaluation of Individual
Quality of Life (SEIQoL) [10] which uses an individual- A favorable opinion was received from the Ethics Com-
ized approach to measure each patient’s unique perspective mission of Freiburg University, Germany (vote: 293/10,
on QoL. Patients can choose, rate, and weight five domains date: 09/20/2010).
that they consider important, such as ‘‘family,’’ ‘‘health,’’
or ‘‘social life/other relations’’ [11]. However, the disad- Development of the SEIQoL-Questionnaire
vantage of this instrument is its use of semi-structured
interviews, which are very time-consuming. When working We developed the SEIQoL-Q on the basis of the SEIQoL-
with the large numbers of patients, this type of instru- DW by transforming the semi-structured interview guide
ment—even in its shortened form [SEIQoL-Direct into a written questionnaire. The original SEIQoL-DW
Weighting (SEIQoL-DW)]—is not practical for day-to-day uses interviews to identify each patient’s five most
clinical work in a (radiation) oncology or palliative care important domains of life (‘‘What are the five most
unit where cancer patients are usually treated. important areas of your life at present?’’). If the patient
For these reasons, the purpose of our study was to cannot determine five domains on his own, he is given a list
transform the SEIQoL into an economical instrument that of frequently chosen domains from which he can choose
can be used in daily clinical work as well as in clinical (family, relationships, health, finances, living conditions,
trials with large samples. Furthermore, our investigation work, social life, leisure activities, religion/spiritual life).
focused on the following questions: (1) How good is the In the direct weighting procedure, patients are asked to use
individual and the health-related QoL in patients receiving a disk which allows to show the importance of each domain
radiotherapy (measured by the SEIQoL-Q and the QLQ- by giving the more important domains a larger area of the
C30, respectively)? (2) How important are the life domains disk, and the less important domains a smaller area of the
measured by the SEIQoL-Q for patients receiving radio- disk [12].
therapy, and how satisfied are they with each of these Analogous to the SEIQoL-DW, participants using the
domains? (3) Do variables such as sex, age, or diagnosis SEIQoL-Q had to name five life domains which they
influence individual QoL? (4) What are the correlations considered most important to them personally. Then, par-
between the SEIQoL-Q and the QLQ C30 scales? ticipants were asked to write these domains down on empty
lines and rate and weight them using visual analog scales
(VAS).
Methods We tested the initial version of the SEIQoL-Q by
handing out the questionnaire to willing staff members
Design (N = 16) from the radiation oncology unit as well as
patients (N = 32) who visited the outpatient clinic on a
A cross-sectional study was conducted for a period of four randomly chosen day. All test persons were asked to name
months (September–December 2010). any problems that occurred while filling in the SEIQoL-Q.
Whereas staff members did not find it problematic to
Sample and recruitment independently choose and assign important life domains, 7
out of 32 patients found it difficult to complete these tasks.
Patients were recruited in the Department of Radiation Furthermore, 13 patients had trouble filling in the VAS.
Oncology at the University Medical Center Freiburg, Based on this information, we developed a revised, final
Germany. Patients in all three phases of radiation treatment version of the SEIQoL-Q. Rather than asking participants
(first consultation, ongoing irradiation, and aftercare) were to independently list five important life domains, we pro-
eligible for consecutive inclusion in our study. Patients vided (after the question: ‘‘How important to you is the
with strong mental or physical restrictions who had a following area of life at the moment?’’) a list of the twelve
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Table 1 Calculation of the SEIQoL Index Table 2 Patient characteristics
A–L: weights for the 12 areas of life Characteristics N (%)
A%–L%: relative weights for the 12 areas of life normed on 100 %
Gender
a - l: values from rating satisfaction with the 12 areas of life
Male 468 (42.2)
RA ? B ? C ? ? L = W100
Female 639 (57.7)
A% = A/W100 9 100
Phase of radiation treatment
RA% 9 a/100 ? B% 9 b/100 ? C% 9 c/100 ? ? L% 9 l/
100 = IQoL First consultation 303 (27.3)
Ongoing irradiation 114 (10.3)
Aftercare 630 (56.9)
most important domains found in the literature: family, Diagnosis
partnership, friends, social life, finances, work/occupation, Tumor diseases
physical health, emotional well-being, self-dependence/ Head and neck 88 (7.9)
autonomy, home/housing, hobbies/leisure, and religion/ Gastrointestinal tract 83 (7.5)
spirituality [10, 13]. These domains could then be weighted Respiratory organs and thorax 80 (7.2)
by participants based on a 5-point Likert scale (0 = not at Skin 11 (1.0)
all important—25 = not very important—50 = impor- Mesothelium, peripheric nervous system, 24 (2.2)
tant—75 = very important—100 = extremely important). connective tissue
A second part of the questionnaire asked patients to rate Mamma 288 (26.0)
their satisfaction with each domain using a 5-point Likert Urogenital tract (except prostate) 59 (5.3)
scale (0 = not at all satisfied to 100 = extremely satisfied). Prostate 119 (10.7)
An individual QoL index can be calculated (calculation Eyes, central nervous system, endocrine glands 35 (3.2)
formula: see Table 1). It can range from 0 to 100, with Metastases 111 (10.0)
higher values representing better QoL. Lymphatic and hematopoietic system 61 (5.5)
Others 42 (3.8)
Statistical analyses Pain disorders 104 (9.4)
Totals that do not add up to N = 1,108 are the result of missing
IBM SPSS Statistics 21.0 was used for the statistical analysis. values
To analyze the acceptance of the questionnaire, we deter-
mined the rate of missing data. Two-sided t tests for inde- patients were excluded. Patient characteristics are shown in
pendent samples were used to investigate differences between Table 2.
subgroups. The reliability (i.e., internal consistency) of the
SEIQoL-Q was assessed by Cronbach’s alpha coefficient. To Individual QoL in patients receiving radiotherapy
examine the correlations between the SEIQoL-Q and the
various QLQ-C30 scales, we used Pearson’s r. As measured by the QLQ-C30, the average HRQoL was
55.6 (SD = 22.8) on a scale from 0 to 100, with higher
values representing better QoL. The average individual QoL
Results index, measured by the SEIQoL-Q, was 59.6 (SD = 16.4).
Participants rated ‘‘physical health’’ as the most
Population characteristics important life domain, followed by ‘‘emotional well-
being’’ and ‘‘family.’’ Despite the importance of physical
A total of 1,108 patients participated in our study. The health for patients, this domain received the lowest score in
majority of participants (74.1 %) were cancer patients regard to satisfaction. The domains ‘‘home/housing,’’
receiving curative treatment, 19.3 % were cancer patients ‘‘family,’’ and ‘‘partnership’’, respectively, were given the
undergoing palliative treatment, and 6.6 % received radi- highest satisfaction scores by patients. Table 3 shows the
ation therapy due to pain disorders such as arthrosis or variables of importance and satisfaction in regard to the
calcaneal spur. On average, irradiation had initially begun twelve life domains of the SEIQoL-Q.
2 years prior to participation in the study (range from
0 days to 31 years). The mean age of the patients was Influence factors on QoL
65 years (range 9–91 years). This wide range can be
explained by the fact that patients were included consec- Although age had no influence on QoL within our sample,
utively in our study, and neither very old nor very young other variables showed significant differences. Male
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Table 3 Variables of importance and satisfaction Table 4 Influencing factors on the SEIQoL-Q index
SEIQoL-Q life domain Importance Satisfaction N M SD t df p
N M SD N M SD Gender
Physical health 1,081 85.3 18.3 1,064 46.1 27.4 Male 454 61.2 17.3 –2.66 912.5 .008
Emotional well-being 1,065 83.2 18.0 1,048 52.8 25.3 Female 610 58.4 15.5
Family 1,068 82.5 21.1 1,055 72.2 23.8 Treatment intention
Home/housing 1,073 80.7 18.4 1,055 72.7 20.9 Curative 716 60.9 16.4 3.31 903 .001
Self-dependence/ 1,049 77.3 20.4 1,012 59.7 23.0 Palliative 189 56.4 17.3
autonomy Phase of treatment
Partnership 960 75.8 30.5 940 69.3 29.2 Ongoing irradiation 110 55.2 17.9 2.93 1,009 .003
Friends 1,053 67.3 22.4 1,036 62.6 21.8 No irradiationa 901 60.0 16.2
Hobbies/leisure 1,046 60.4 22.9 1,015 54.6 22.5 Diagnosis
Finances 1,054 58.0 22.5 1,044 53.5 20.7 Breast carcinoma 271 60.3 15.3 –2.30 384 .022
Social life 1,031 53.6 24.3 1,003 53.8 21.6 Prostate carcinoma 115 64.4 17.0
Work/occupation 825 47.0 32.2 760 45.9 27.3 Two-sided t tests for independent samples, M mean, SD standard
Religion/spirituality 1,049 44.3 28.7 982 50.6 25.0 deviation
a
M mean, SD standard deviation No irradiation = first consultation and aftercare
patients were shown to have a significantly better QoL than make it possible to reliably measure HRQoL. Individual
females. In comparison with prostate carcinoma patients, QoL, which is much more relevant to patients with incur-
those with breast carcinoma had a significantly worse QoL. able diseases, can be measured using other instruments,
Table 4 shows the differences between the tested patient such as the SEIQoL-DW. Nevertheless, these instruments
groups. are complicated, and many patients need help under-
standing them. For example, complex questionnaire sys-
Psychometric properties of the SEIQoL-Q tems like the SEIQoL-DW’s segmented wheel are
particularly challenging for cancer patients who are expe-
For all but two items in the SEIQoL-Q, more than 93 % of riencing negative side effects, patients in a poor condition,
all patients provided an answer. Only the life domains and elderly patients [15].
‘‘partnership’’ (86.6 %) and ‘‘work/occupation’’ (74.5 %) Due to the special focus of palliative care on better QoL,
had response rates of less than 93 %. The internal consis- patients in need of palliative care are the most important
tency of the SEIQoL-Q was calculated at a = .71. The target group for the endpoint QoL [16, 17]. However, until
following items correlated with one another: now, there have been few questionnaires that can be easily
used among this target group. We therefore decided to
• the QoL index from the SEIQoL-Q and the functioning
develop the SEIQoL-Q, which can be used easily in daily
scale ‘‘global quality of life’’ from the QLQ-C30
clinical life. The new questionnaire was shown to be
(r = .42, p \ .001),
appropriate for everyday practice in a high-volume radio-
• ‘‘satisfaction with physical health’’ from the SEIQoL-Q
therapy unit and did not involve additional staff.
and the scale ‘‘physical functioning’’ from the QLQ-
The original SEIQoL uses interviews to identify each
C30 (r = .34, p \ .001),
patient’s five most important domains of life. If the patient
• the SEIQoL-Q ‘‘satisfaction with emotional well-
cannot determine five domains on his own, he is given a list
being’’ and the scale ‘‘emotional functioning’’ from
of frequently chosen domains from which he can choose
the QLQ-C30 (r = .50, p \ .001).
[12]. Thus, the list of life domains given by the new SEI-
QoL-Q does not modify the SEIQoL rules. The list is an
important aid for the patients. As shown in other studies,
Discussion more than 95 % of the patients chose their most important
areas of life from these twelve suggestions, and most
Improving patients’ QoL is an important goal in health care patients decided on the same domains (family, physical
and in clinical cancer research. Moreover, it is the cor- health, and emotional well-being) [18].
nerstone of palliative care [14]. However, measuring QoL The new SEIQoL-Q is designed to be completed by
is not an easy task because it is as individual as the people patients. Therefore, we replaced the SEIQoL’s segmented
themselves. Well-validated instruments like the QLQ-C30 circular diagram, which portrays the five domains allowing
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a weighting range from 0 to 100 %, with simple, well- measure HRQoL should be viewed as complementary
known, and easily understood 5-point Likert scales. This rather than interchangeable.
yields slightly less precise weighting results. Yet, we Furthermore, the QoL index of the SEIQoL-Q correlated
consider the difference to be negligible because our moderately with the functioning scale ‘‘global quality of
emphasis is on the importance of domains rather than life’’ of the QLQ-C30, which was to be expected. Therefore,
figures. the SEIQoL-Q index seems to measure a different construct
In our study, we found that the most important life than physical health and functional status, which supports
domain was ‘‘physical health,’’ followed by ‘‘emotional the instrument’s intended focus on individual QoL.
well-being’’ and ‘‘family.’’ This corresponds to numerous
studies which used the SEIQoL-DW with cancer patients Limitations
(e.g., [19]). The patients in our study attributed the least
importance to the domains ‘‘religion/spirituality’’ and We were able to show that the SEIQoL-Q can discriminate
‘‘work/occupation.’’ However, the seeming irrelevance of between subgroups and patients differing in clinical status.
‘‘work/occupation’’ might be explained by the high average The examination of the quality criteria acceptance and
age of 65, which implies that many patients were likely internal consistency, however, is not sufficient for a psy-
already retired. The low relevance of ‘‘religion/spirituality’’ chometric test. Thus, we acknowledge these limitations in
might be due to the fact that the terms religious and our study. To test the questionnaire’s sensitivity to change,
spiritual cannot be used interchangeably. In the general one would have had to use a longitudinal study design. If
population in Germany, 30 % do not have a religious the SEIQoL-Q is to be used parallel to the SEIQoL-DW, its
affiliation [20] and many individuals describe themselves construct validity should be examined. All of these limi-
as spiritual, but not religious. tations require further investigation.
Patients were most satisfied with the life domain ‘‘home/
housing,’’ which ranked fourth in regard to importance.
Thus, it appears that home life is of crucial importance to Conclusions
patients and has a positive influence on their individual
QoL. Clinically, this result underlines the importance of According to our findings, the SEIQoL-Q appears to be a
leaving patients in their accustomed home surroundings feasible and economical instrument for use in quantitative
and treating them as outpatients whenever possible. Like- research in cancer patients in different stages of their dis-
wise, ‘‘family’’ and ‘‘partnership’’ appear to also have a ease. The results of our study are useful not only for
positive influence on patients’ QoL. For this reason, care- clinical research but also for clinical practice. Physicians
givers should be integrated into the entire treatment process can implement the measure in order to monitor their
to the extent that this is possible. patients’ QoL and to improve the communication between
Regardless of diagnoses, male patients were shown to patients and themselves regarding this topic.
have a significantly better QoL than females. This could be
connected with the differing health concepts of men and Conflict of interest None.
women (e.g., the higher symptom consciousness of women
[21]). This result also corresponds with the findings from
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