Timing and contents of early palliative care preferred by patients with advanced cancer in Japan: an Internet-based questionnaire survey

Abstract

Purpose
To clarify the preferred timing and contents of early palliative care and preference for continued care delivery among patients with advanced cancer in Japan.

Methods
We conducted an Internet-based anonymous questionnaire survey on adult patients with advanced cancer. We assessed the patients’ wishes for palliative care delivered by a team or at outpatient clinics while asymptomatic, as well as the preferred intervention timing and preference for continuing care lifelong. Palliative care contents, cancer status, understanding and goals of cancer treatment, symptoms, and background factors were compared among these three preferences.

Results
In total, 531 patients responded (mean age, 61 years; men, 70%; major primary cancer sites, urological tract and breast), of whom 345 patients (65%) wished for palliative care while asymptomatic, and multivariate analysis revealed that a desire to address daily living and financial issues; wishing for consultations regarding illness, treatment, and end-of-life care; young age; primary sites other than hematological or urological sites; and increased physical distress were significantly associated with this wish. Approximately 51.3% of patients preferred palliative care before completing cancer treatment, while 40% preferred continuing palliative care lifelong. Young patients preferred early palliative care, and patients with a desire to address social distress preferred continuing palliative care.

Conclusion
The results highlight the importance of early palliative care planning in patients with advanced cancer; however, evaluating the eligibility for palliative care is essential.

Full text

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Timing and contents of early palliative care
preferred by patients with advanced cancer in
Japan: an Internet-based questionnaire survey
Hitoya Sano
Gifu Welfare Federation of Agricultural Cooperatives, Gifu Seino Medical Center, Seino Kosei Hospita
Takuya Odagiri
Gifu Welfare Federation of Agricultural Cooperatives, Gifu Seino Medical Center, Seino Kosei Hospita
Keisuke Tagami
Yamato Home Care Clinic Tome
Yu Uneno
Kyoto University
Manabu Muto
Kyoto University
Research Article
Keywords: early palliative care, advanced cancer, internet survey, younger age, social distress
Posted Date: June 17th, 2024
DOI: https://doi.org/10.21203/rs.3.rs-4521040/v1
License:   This work is licensed under a Creative Commons Attribution 4.0 International License. 
Read Full License
Additional Declarations: No competing interests reported.

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Abstract
Purpose
To clarify the preferred timing and contents of early palliative care and preference for continued care
delivery among patients with advanced cancer in Japan.
Methods
We conducted an Internet-based anonymous questionnaire survey on adult patients with advanced
cancer. We assessed the patients’ wishes for palliative care delivered by a team or at outpatient clinics
while asymptomatic, as well as the preferred intervention timing and preference for continuing care
lifelong. Palliative care contents, cancer status, understanding and goals of cancer treatment,
symptoms, and background factors were compared among these three preferences.
Results
In total, 531 patients responded (mean age, 61 years; men, 70%; major primary cancer sites, urological
tract and breast), of whom 345 patients (65%) wished for palliative care while asymptomatic, and
multivariate analysis revealed that a desire to address daily living and nancial issues; wishing for
consultations regarding illness, treatment, and end-of-life care; young age; primary sites other than
hematological or urological sites; and increased physical distress were signicantly associated with this
wish. Approximately 51.3% of patients preferred palliative care before completing cancer treatment,
while 40% preferred continuing palliative care lifelong. Young patients preferred early palliative care, and
patients with a desire to address social distress preferred continuing palliative care.
Conclusion
The results highlight the importance of early palliative care planning in patients with advanced cancer;
however, evaluating the eligibility for palliative care is essential.
Background and Objectives
Palliative care for advanced cancer has been recommended not only at the end-of-life stage but also at
an early stage, such as when the disease is conrmed to be incurable [1]. Palliative care during early
stages has been shown to have positive effects on the quality of life, depression, and survival of patients
[2–4]. Based on these reports, the American Society of Cancer Oncology recommends that palliative
care should be initiated during the cancer treatment phase [19].

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Some studies have compared two types of early palliative care interventions [6, 7]: one involves
intervening at a certain stage of the disease, and the other is to intervene on-demand when patients
become symptomatic. Various proposals for initiating palliative care interventions exist [8]. A study
conducted in the United States investigated the appropriateness of the timing of palliative care
interventions [18] and reported that outpatient supportive care clinic referral was perceived by most
patients as timely and useful, and a low symptom burden was associated with the perception of being
referred early.
In Japan, the 2012 Basic Law on Cancer Control recommends “promotion of palliative care from the time
of advanced cancer diagnosis” [20]. However, no studies have investigated the preferences of patients
with advanced cancer for early palliative care. Our previous study was conducted among bereaved
families of patients with cancers who died in palliative care units [9]. Thus, early palliative care from a
patient's perspective is not fully understood.
The primary aim of this study was to determine the timing and contents of early palliative care preferred
by patients with advanced cancer in Japan. The secondary aim was to explore preferences of patients
for continuing palliative care.
Methods
This was an Internet-based anonymous questionnaire survey conducted in February 2023. Participants
provided consent using the opt-in consent method. The study was reviewed and approved by the ethics
committees of Kyoto University Graduate School and Faculty of Medicine, Kyoto University Hospital, in
compliance with Ethical Guidelines for Medical and Biological Research Involving Human Subjects in
Japan (approval number: R3810). Because this study was a questionnaire survey, with no invasive
interventions, of patients who voluntarily enrolled, no risks or disadvantages were anticipated. The study
was conducted by a private contractor, and the researchers did not collect any personal information
about the patients. The study was conducted in compliance with the Declaration of Helsinki and Ethical
Guidelines for Medical Research Involving Human Subjects and initiated after the research protocol was
approved by the ethics committees of all institutions to which the researchers belonged. An introductory
page was created, ample opportunity for refusal was provided, and a response was considered consent.
Subjects
The survey included adult patients with advanced cancer who were registered anonymously on the web
panel of the Japanese online research company Macromill Inc. (Tokyo, Japan). Macromill Inc. was
selected because of the ensured quality of procedures enabling inclusion of patients with advanced
cancer nationwide. To recruit respondents, e-mails were sent to 5,000 candidates, of whom 500 passed
the screening questionnaire assessment to identify suitable respondents. The screening questionnaire
included questions such as whether the participants had cancer and whether the cancer was either
locally advanced or metastasized. Patients with no recurrence or metastasis, under 18 years of age, and
who were unable to respond online were excluded.

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Survey items
The parameters assessed in the survey were the following.
1. Patients’ preference for interventions by the palliative care team or at outpatient palliative care
clinics while asymptomatic
The preferred timing was selected from the following [9]: when the disease was conrmed incurable or
recurrent, during treatment or follow-up, when treatment became ineffective or the disease worsened, or
when they became unable to take care of themselves.
2. Patients’ preference for the continuation of palliative care
This was selected as continuation until the end of life or temporary.
3. Patients’ preference for the contents of palliative care interventions
This was selected based on the following items using a 5-point scale (1, not desired; 5, desired): dealing
with physical distress, dealing with mental distress, dealing with families’ distress, addressing daily life
and nancial issues, consultation regarding illness and treatment, consultation regarding terminal care,
and counseling for meaning of life.
4. Cancer status
Cancer treatment status (i.e., undergoing cancer treatment or follow-up, cancer treatment completed,
etc.), length of time since the diagnosis of recurrence or metastasis, prior palliative care interventions,
and Eastern Cooperative Oncology Group performance status were assessed.
5. Patients’ understanding of cured status and goals of cancer treatment [11]
Patients’ understanding of cancer as cured or cured by treatment was assessed using a 4-point scale
ranging from 1 (highly likely) to 4 (not at all likely). Patients’ understanding of the goals of cancer
treatment were selected from the following: relieving distress, maintaining hope, ensuring that all
treatments have been completed, prolonging life as long as possible, curing cancer, helping cancer
research, etc.
. Patients’ current symptoms
The symptoms were assessed according to the Integrated Palliative Care Outcome Scale-Japanese
Version (IPOS-j [10]; score range, 0 [not at all] to 4 [overwhelming]) and included physical distress, mental
distress, social distress, and spiritual pain.
7. Patients’ background factors

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Factors, including age, sex, primary site, area of residence, highest educational qualication, profession,
personal and family income, cohabitator details, marital status, details of children, and religious beliefs,
were assessed.
Statistical analysis
As the primary outcome, we calculated the frequency distribution of item a. Subsequently, we compared
items c to g using univariate analysis (i.e., Welch’s test or Fisher’s exact test) according to the wish to
undergo palliative care, and items with a
p
-value < 0.200 in the univariate analysis were compared using
multiple logistic regression analysis.
Next, in patients who wished to undergo palliative care, we compared items c to g according to the
preferred intervention timing in the same manner as mentioned above. Since no difference was observed
in the univariate results among the four intervention timings(i.e.,when the disease was conrmed
incurable or recurrent, during treatment or follow-up, when treatment became ineffective or the disease
worsened, or when they became unable to take care of themselves)and two intervention timings (i.e.,
before and after completing anticancer treatment), we compared the items using the latter timings.
In addition, as the secondary outcome, we calculated the frequency distribution of item b. We also
compared items c to g using the same univariate and multivariate analyses according to the preference
for continuing palliative care. All analyses were performed using SPSS 19.1 (IBM Japan, Tokyo, Japan); a
p
-value < 0.05 was considered signicant, and missing values were not analyzed.
Results
Five hundred and thirty-one adult patients with advanced cancer responded to the survey (average age,
61.2 years; men, 70.8%; major primary sites, urological tract and breast), and 98.3% of them were
undergoing cancer treatment or follow-up. In addition, 116 patients (21.8%) indicated that they had
received palliative care interventions (Table1).
Of the 531 patients, 345 (65.0%) wished to undergo palliative care team/outpatient interventions while
asymptomatic. Items signicantly associated with considering palliative care interventions were a desire
to address daily living and nancial issues; consultations regarding illness, treatment, and end-of-life
care; young age; primary sites other than hematological or urological sites; and increased physical
distress (Table2).
Of the 345 patients who wished to undergo palliative care, 74 (21.4%) preferred interventions when the
disease was conrmed incurable or recurrent, 103 (29.9%) preferred interventions during treatment or
follow-up, 123 (35.7%) preferred interventions when treatment became ineffective or the disease
progressed, and 45(13.0%) preferred interventions when they became unable to take care of themselves.
In the multivariate analysis, young age was signicantly associated with the preferred time of
intervention before completing cancer treatment (Table3).

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Regarding the preference for continuing palliative care, 205 (39.9%) of the 514 (17 with missing data)
patients wished to continue palliative care until the end of life, whereas 309 (60.1%) preferred temporary
palliative care. In the multivariate analysis, the items signicantly associated with considering continuing
palliative care until the end of life were a desire to address daily life and nancial issues, believing less
that treatment would cure the disease, and having treatment goals other than prolonging life or curing
cancer (Table4).
Discussion
To the best of our knowledge, this is the rst study in Japan on preferences for timing, content, and
continuing palliative care based on a survey of patients themselves. The most important result was that
65.0% of patients wished to undergo palliative care while asymptomatic, and 51.3% of them wished to
undergo interventions before completing cancer treatment. However, palliative care interventions were
provided to only 21.8% of patients in this study. In our previous study [9], in which we surveyed bereaved
families of cancer patients, 32.3% of patients received palliative care during cancer treatment, and a
large percentage of patients’ relatives judged the timing of palliative care referral as appropriate
compared with the families of patients who received palliative care after cancer treatment, and
appropriateness of timing and good quality of death were signicantly associated. The present study
also suggests that the timing of palliative care interventions should be earlier. However, not everyone
requires palliative care; therefore, evaluating the eligibility of patients is essential.
The next important result was concerning the items related to wishing for palliative care interventions
while asymptomatic: a wish to address daily living and nancial issues; consultations regarding illness,
treatment, and end-of-life care; young age; and increased physical distress. However, if the primary sites
were hematological or urological, the patients did not request palliative care interventions. Young age
was also associated with wishing for palliative care before completing cancer treatment. According to
the 2018 patient experience survey report by the National Cancer Center’s Cancer Control and
Information Center [16], young patients had disadvantages in terms of nances, employment status,
building relationships, and dialogue with healthcare providers, indicating that they had higher care needs
than older patients, consistent with the present results. Although palliative care has conventionally
focused on the palliation of physical and psychological distress, a strong wish to address social distress
and undergo early palliative care interventions seems to exist among young patients. In the present
study, another request for palliative care was related to consultations regarding illness and treatment,
which was reported in the classic early palliative care study by Temel et al. [12] as well. The importance
of advanced care planning in palliative care has also been noted [17], as suggested by the present study.
In contrast, patients with hematological and urological cancers did not wish to receive palliative care.
Hematological cancers may be treated even in advanced disease states, and palliative care interventions
tend to be delayed [13, 14]. Patients with urological cancers are relatively old [15], and they may have
less preference for early palliative care.

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Another important result of this study was that 39.9% of patients preferred continuing palliative care until
the end of life. This preference was associated with a desire to address social problems and a lack of
motivation for undergoing cancer treatment. Since social problems can persist over the entire trajectory
of an illness, patients with social problems may wish to continue palliative care.
The present study had some limitations. First, although this study included patients with advanced
cancer, the advanced cancer status was conrmed only by self-reporting. Second, we recruited only
patients registered with a private monitoring provider, which might have introduced a background bias.
As shown in Table1, data for all regions, cancer sites, and income levels were obtained. However, the
average age of the patients is 61 years, which is less than that of all patients with cancer, possibly
because of the Internet-based responses. Young age was associated with a preference for early
palliative care, and fewer early palliative care seekers may have resulted if all age groups were included.
In the present study, a large proportion of patients wished for early palliative care compared with the
previous study on bereaved families [9]. Finally, most of the patients were undergoing cancer treatment
or follow-up (Table1). Palliative care preferences differ among patients who cannot be treated for
cancer. Therefore, clarifying the preferences of such patients who are targets of early palliative care is
essential.
Conclusion
In the present study conducted in Japan, approximately 2/3rd of patients with advanced cancer preferred
palliative care interventions while asymptomatic, and half of them wished to undergo palliative care
before completing cancer treatment. Forty percent of patients wished to continue palliative care until the
end of life. Young patients wished to undergo early palliative care, whereas those who wished to address
social distress preferred to continue palliative care.
Declarations
Competing interests
The authors have no conicts of interest.
Ethics approval
This study was conducted in compliance with the Declaration of Helsinki and Ethical Guidelines for
Medical and Biological Research Involving Human Subjects in Japan and approved by the ethics
committees of Kyoto University Graduate School and Faculty of Medicine, Kyoto University Hospital
(approval number: R3810).
Consent to participate

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Participants provided consent using the opt-in consent method.
Consent to publish
All authors agree to publish this article.
Funding
This work was supported by the Ministry of Health, Labor, and Welfare of Japan (Health Labor Science
Research Grant, Grant No. 20EA1009). The funder had no role in the conception and/or design of the
work; the acquisition, analysis, and interpretation of data; and/or the drafting of this manuscript.
Author Contribution
All authors contributed to the study conception and design. Material preparation and data collection
were performed by Yu Ueno. Analysis and the rst draft of the manuscript were performed by Hitoya
Sano and Takuya Odagiri. All authors commented on previous versions of the manuscript. All authors
read and approved the nal manuscript.
Acknowledgement
This work was supported by the Ministry of Health, Labor, and Welfare of Japan (Health Labor Science
Research Grant, Grant No. 20EA1009). We would like to thank Editage (www.editage.jp) for English
language editing.
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Tables
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