JOURNAL OF PALLIATIVE MEDICINE Volume 17, Number 8, 2014 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2013.0625
Original Articles
Symptom Burden and Achievement of Good Death of Elderly Cancer Patients Tatsuya Morita, MD,1 Meiko Kuriya, MD,2 Mitsunori Miyashita, RN, PhD,3 Kazuki Sato, RN, PHN, PhD,3 Kenji Eguchi, MD, PhD,4 and Tatsuo Akechi, MD, PhD 5
Abstract
Background: The aim of this study was to compare the symptom burden and achievement of good death of elderly cancer patients with that of younger patients. Methods: Secondary analysis of three large databases was performed: (1) 7449 cancer outpatients receiving chemotherapy, (2) 1716 outpatients with metastatic cancer, and (3) 1751 terminally ill cancer patients who died in hospitals or at home. Outcome measures used included the M.D. Anderson Symptom Inventory, Brief Pain Inventory, and Good Death Inventory. Results: In cancer outpatients receiving chemotherapy, older patients reported significantly higher levels of dyspnea and fatigue (lung cancer), emotional distress (breast cancer), and unmet needs regarding information and help with decision making (stomach cancer); however, the intensity of nausea was significantly lower across the four primary tumor sites, and intensity of pain was significantly lower in lung cancer. In outpatients with metastatic cancer, older patients reported lower levels of ‘‘maintaining hope and pleasure,’’ ‘‘a good relationship with the family,’’ and ‘‘independence,’’ while there was no significant difference in the pain intensity. In terminally ill cancer patients, proxy family members reported significantly lower levels of ‘‘independence,’’ while they reported significantly lower levels of pain, physical discomfort, and psychological discomfort. Conclusions: Older cancer patients need at least the same levels of palliative care; while they experienced generally lower levels of nausea and pain, some older patients experienced higher levels of dyspnea, fatigue, emotional distress, need for information, help with decision making, loss of hope and pleasure, and independence.
Introduction
M
any countries including Japan are experiencing marked increases in the aged population, and cancer is the leading cause of death among elderly patients.1 This indicates that understanding patients’ experiences in their end-of-life stage is necessary to provide better palliative care for elderly patients. Some studies to date have reported differences in the symptom burden and quality of life at the end-of-life stage in older palliative care patients.2–16 These studies investigated the symptom prevalence and palliative medications of advanced cancer populations, but few studies reported the achievement of good death reported by patients, although
good death is one of the important goals for terminally ill cancer patients.17,18 Furthermore, no studies included cancer patients from various settings: outpatient chemotherapy setting, outpatient setting, and inpatient/home setting. In addition, there were no Asian studies. We believe, therefore, that clarifying the symptom burden and achievement of good death of Japanese elderly cancer patients in an outpatient chemotherapy setting, outpatient setting, and inpatient/home setting is of value for a better understanding of the total experience of older cancer patients. The primary aim of this study, thus, was to compare the symptom burden and achievement of good death of elderly cancer patients with that of younger patients.
1
Department of Palliative Care and Supportive Care, Seirei Mikatahara General Hospital, Hamamatsu, Japan. Department of Palliative Medicine, Teikyo University School of Medicine, Tokyo, Japan. Department of Palliative Nursing, Tohoku University Graduate School of Medicine, Sendai, Japan. 4 Department of Internal Medicine and Medical Oncology, Teikyo University School of Medicine, Tokyo, Japan. 5 Department of Psychiatry and Cognitive-Behavioral Medicine, Nagoya City University Graduate School of Medical Sciences, Nagoya, Japan. Accepted February 4, 2014. 2 3
887
888 Methods
This study was a secondary analysis of three previous studies.19–21 First database: outpatients receiving chemotherapy
The first was a cross-sectional survey involving all cancer outpatients newly starting chemotherapy in a designated cancer hospital in Japan.19 Inclusion criteria were (1) cancer patients newly starting chemotherapy in outpatient settings; (2) primary tumor sites of the lung, gastrointestine, pancreas, bile duct, breast, ovary, and uterus; and (3) consent from the patient. Exclusion criteria included (1) inability of the patient to complete the questionnaire (dementia, cognitive failure, or psychiatric illness) and (2) language difficulty or visual loss. A previous study reported the results in the early phase of this survey (2006 to 2007), and the current study used the pooled data during three years (2006 to 2009) using the same methodology. Questionnaires were distributed to consecutive cancer patients on every hospital visit. We examined (1) 0–10 numeric rating scales of six physical symptoms (worst pain, dyspnea, nausea, anorexia, somnolence, fatigue) adopted from the Japanese version of the M.D. Anderson Symptom Inventory (MDASI);22 (2) the Distress Thermometer to measure the degree of distress;23 and (3) presence or absence of unmet needs in three areas: information about treatment and decision making, economic problems, and daily activities.24 Second database: outpatients with metastatic cancer
The second involved cross-sectional surveys on outpatients performed in the regional palliative care intervention trial, the Outreach Palliative Care Trial of Integrated Regional Model (OPTIM) study.20,21 Study participants were recruited from 34 hospitals of four areas as a nearly representative sample of cancer outpatients in each region. Inclusion criteria were (1) adult cancer patients with a primary tumor site in either the lung, esophagus, stomach, colon, rectum, pancreas, liver, biliary system, kidney, prostate, bladder, breast, ovary, or uterus; (2) presence of metastatic cancer; (3) outpatient visits to the oncology department or each specialty division, such as respiratory medicine for lung cancer patients, between April and June 2008 (not palliative care division only); and (4) informed of malignancy. Exclusion criteria included (1) inability of the patient to complete the questionnaire (dementia, cognitive failure, or psychiatric illness); (2) severe emotional distress of the patient as determined by the principal treating; (3) poor physical condition meaning unable to complete the questionnaire; and (4) language difficulty or visual loss. Data were collected on (1) pain intensity, (2) achievement of good death, and (3) patient-reported quality of care. Pain intensity was measured using the Japanese adaptation of the Brief Pain Inventory, with a score given for the pain at its worst in the previous 24 hours.25 Achievement of good death was measured using the Good Death Inventory, patient version.26 The Good Death Inventory was developed to specifically measure the quality of life of Japanese patients with advanced cancer, including 10 domains from comfort to psycho-existential well-being, with a seven-point Likert-type scale from ‘‘1: strongly
MORITA ET AL.
disagree’’ to ‘‘7: strongly agree.’’ The score ranges from 1 to 7, and higher values indicate higher levels of quality of life. For this study, three items were included in the comfort domain (pain, physical comfort, and psychological comfort) and nine other domains were used. The patient-reported quality of care was measured using the Care Evaluation Scale, patient version.27 The Care Evaluation Scale is a well-validated tool to quantify the level of patient-perceived need for improvements in palliative care. The Care Evaluation Scale consists of eight subscales (physical care provided by physicians, physical care provided by nurses, psycho-existential care, help with decision making, coordination/consistency of care, environment, availability, and cost), and, for this study, the total score was used. The score ranges from 1 to 7, and higher values indicate a lower perception of the necessity for improvement. Third database: terminally ill patients (proxy survey on bereaved family members)
The third was a database of cross-sectional surveys on bereaved family members performed for the OPTIM study.20 Study participants were recruited from 23 hospitals and 16 home-care clinics of four areas as a nearly representative sample of cancer death in each region (39% of all deaths covered). Inclusion criteria were (1) bereaved adult family members of an adult cancer patient who died in the institution or at home (one family member was selected for each patient); (2) a primary tumor site of either the lung, esophagus, stomach, colon, rectum, pancreas, liver, biliary system, kidney, prostate, bladder, breast, ovary, or uterus; (3) received medical treatments on three or more days by the institution; and (4) informed of malignancy. Exclusion criteria included (1) incapacity to complete the questionnaire, (2) severe emotional distress of the family as determined by the principal treating physicians, (3) treatment-associated death or death from comorbidity, (4) death in intensive care units, and (5) family member unavailable. Data were collected on (1) achievement of good death, (2) family-reported quality of care, and (3) care-giving burden. Achievement of good death was measured using the Good Death Inventory,28 and the family-reported quality of care was measured using the Care Evaluation Scale.29 The caregiving burden was measured using the Caregiving Consequences Inventory.30 The Caregiving Consequences Inventory quantified caregiving consequences from a bereaved family member’s perspective, and a higher score indicates a higher perceived burden, with potential ranges of 1 to 5. Ethical approval
All studies were approved by the institutional review boards of all participating institutions. The first database was constructed as a part of routine clinical practice, and fulfillment of the questionnaire was regarded as patient consent. The other databases were constructed as a part of an intervention trial, and return of the questionnaire was regarded as participant consent. Statistical analyses
For comparisons, we had acknowledged different cutoff points might result in different conclusions, and we decided
< 0.001 (25%) (21%) (10%) (8.1%) (5.6%) (20%) (5.8%) (4.2%)
324 215 106 25 89 335 23 44
742 (64%) 404 (35%)
146 123 61 48 33 120 34 25 (33%) (23%) (17%) (11%) (2.0%) (9.9%) (0.2%) (3.8%) 903 622 460 285 54 266 5 102 (27%) (14%) (20%) (27%) (0.7%) (7.5%) (1.6%) (2.9%) 1,295 655 930 1,267 33 355 78 139
1,659 (62%) 1,038 (38%) 2,203 (46%) 2,549 (54%)
< 0.001
< 0.001
234 87 159 212 73 83 76 13
453 (48%) 484 (52%)
(25%) (9.3%) (17%) (23%) (7.8%) (8.9%) (8.1%) (1.4%)
210 84 98 61 181 94 36 15
539 (69%) 240 (31%)
(27%) (11%) (13%) (7.8%) (23%) (12%) (4.6%) (1.9%)
< 0.001
< 0.001
360 (61%) 225 (38%)
45 (7.6%) 156 (26%) 389 (66%) — — < 0.001 77 – 4.5 — — — — — 60 – 8.1 — — — — — < 0.001 75 – 4.1 (75) — — — — — 58 – 8.1 (59) — — — — —
- 49 50–59 60–69 70–79 80– Sex Male Female Primary tumor sites Lung Stomach Colon Breast Prostate, kidney, bladder Liver, pancreas, bile ducts Ovary, uterus Others, unknown
Age
(28%) (19%) (9.1%) (2.2%) (7.7%) (29%) (2.0%) (3.8%)
0.19
< 0.001 — — — 624 (54%) 537 (46%)
‡ 70 (1,161) < 70 (590) < 70 (937)
‡ 70 (779)
P
Terminally ill patients Metastasis outpatients
P ‡ 70 (2,697) Age < 70 (n = 4,752)
For cancer outpatients receiving chemotherapy, we finally obtained a total of 7449 patients, 4752 in the younger group and 2697 in the older group, from a total of 8662 patients (response rate, 86%). For outpatients with metastatic cancer, of 4003 patients who met the inclusion criteria, 1002 patients were excluded and 3001 questionnaires were sent. Twelve questionnaires were returned due to the wrong address, and a total of 1716 responses (937 in the younger group and 779 in the older group) were analyzed (effective response rate, 58%). For terminally ill cancer patients, of 4228 patients who met the inclusion criteria, 794 were excluded and 3434 questionnaires were sent to bereaved family members. Ninetyfour questionnaires were returned due to the wrong address, and a total of 2247 responses were obtained (effective response rate, 68%). This study analyzed 1751 patients who died in hospitals or at home (492 in the younger group and 966 in the older group; 98 in the younger group and 195 in the older group, respectively). Table 1 summarizes subject backgrounds. In outpatients receiving chemotherapy (see Table 2), older patients reported significantly higher levels of dyspnea (lung cancer), fatigue (lung and colon cancer), emotional distress (breast cancer), and unmet needs regarding information and help with decision making (stomach cancer). The intensity of nausea was significantly lower across four primary tumor sites, and the intensity of pain was significantly lower in lung and stomach cancer. In outpatients with metastatic cancer (see Table 3), regarding the achievement of good death, older patients reported lower levels of ‘‘maintaining hope and pleasure,’’ ‘‘a
Outpatients receiving chemotherapy
Results
Table 1. Backgrounds
to use 70 years of age as the cutoff in this study on the basis of recommendations from geriatric oncology, given that many age-related changes occur after this age.31 Other cutoff points (i.e., 65 and 75) achieved essentially the same results. We had determined the significance level was conservatively set at P = 0.01, as we performed multiple comparisons. For patients receiving chemotherapy we compared the symptom intensity and prevalence of unmet needs between older and younger patients with lung, colon, breast, and stomach cancer, respectively, because the age was significantly associated with the primary tumor site. P-values were adjusted by sex. For metastatic outpatients we compared pain intensity, achievement of good death, and perceived quality of care between older and younger patients; and we calculated adjusted P-values by the primary tumor site and sex for items with a significant difference. For terminally ill patients we compared the achievement of good death, perceived quality of care, and caregiving burden between older and younger patients who died in hospital and at home, respectively; and we calculated adjusted P-values by the primary tumor site and sex for items with a significant difference. To summarize the difference between older patients and younger patients, we calculated Hedges’ g to estimate the effect size. Effect sizes of 0.2, 0.5, and 0.8 were regarded as small, moderate, and large effects, respectively.32,33 All analyses were performed using SPSS 12.0 (IBM, Armonk, NY).
889
P
SYMPTOM BURDEN OF ELDERLY PATIENTS
0.6% (4) 0.8% (5) 8.2% (54) 9.5% (59)
0.68 0.44
good relationship with the family,’’ and ‘‘independence.’’ There was no significant difference in the pain intensity and perceived quality of care. On the other hand, older patients reported lower levels of ‘‘feeling a burden to others.’’ In terminally ill cancer patients (see Table 3), proxy family members reported significantly lower levels of ‘‘independence’’ in both older patients who died in hospitals and at home, while they reported significantly lower levels of pain, physical discomfort, and psychological discomfort. Table 4 summarizes the effect sizes of the items investigated. Older patients in some groups experienced lower levels of nausea, pain, and feeling a burden to others; but they experienced higher levels of dyspnea, fatigue, emotional distress, needs for information and help with decision making, loss of hope and pleasure, and independence. There were no significant differences between older and younger patients in other variables, and, in the case of a significant difference, the absolute difference was not large (i.e., effect sizes were < 0.30). Bold: higher level of distress in older than younger patients; italics: lower level of distress in older than younger patients
0.7% (2) 1.4% (4) 1.0% (9) 4.2% (38) 2.3% (n = 30) 3.8% (n = 49)
0.02 0.61
1.9% (18) 4.1% (19) 6.4% (59) 7.0% (32)
0.016 1.3% (17) 0.65 3.3% (42)
0.38 0.09
0.007 11% (75) 17% (104) 11% (32) 12% (107) 11% (n = 138)
0.37
9.3% (86) 9.8% (45)
0.73
11% (133)
0.69
0.50 3.1 – 2.5 3.0 – 2.6 0.005 3.3 – 2.6 2.8 – 2.5 0.99 2.6 – 2.8 2.2 – 2.7 0.46 2.4 – 2.7 2.4 – 2.5
1.9 – 2.6 0.045 2.3 – 2.8 1.1 – 1.6 0.099 0.92 – 1.3 1.0 – 1.7 0.89 1.5 – 2.1 0.24 – 0.9 < 0.001 1.5 – 2.3 0.79 – 1.6 0.18 2.4 – 2.8 1.3 – 2.0 < 0.001 1.9 – 2.1 1.9 – 2.1 0.45 2.8 – 2.6 2.0 – 2.4 0.85 – 1.5 0.95 – 1.7 0.64 – 1.5 1.0 – 1.8 1.6 – 1.9 1.9 – 2.1 1.8 – 2.5 < 0.001 2.2 – 2.7 1.8 – 2.4 0.087 0.80 – 1.5 0.65 0.99 – 1.5 0.77 – 1.2 0.11 1.6 – 2.3 0.005 0.8 – 1.4 0.9 – 1.7 0.77 0.50 – 1.5 < 0.001 0.92 – 1.6 0.61 – 1.4 < 0.001 1.4 – 2.2 0.005 1.4 – 2.1 1.3 – 2.0 0.51 1.5 – 2.2 0.52 1.3 – 1.8 1.5 – 1.8 0.003 2.1 – 2.4 < 0.001 1.5 – 1.9 1.8 – 2.0 0.001 2.3 – 2.6 0.70 – 1.1 1.2 – 1.9 0.72 – 1.7 1.5 – 2.3 1.3 – 1.7 1.4 – 1.9
Physical Symptoms Worst pain Least pain Dyspnea Nausea Anorexia Somnolence Fatigue Psychological problems Emotional distress Unmet needs Information and help with decision making Economic problems Daily activity
< 70 (655) ‡ 70 (622) Age < 70 (n = 1,295) ‡ 70 (903)
P
< 70 (930) ‡ 70 (460)
P
< 70 (1,267) ‡ 70 (285)
P
Stomach Breast Colon Lung
Table 2. Symptom Prevalence in Outpatients Receiving Chemotherapy
1.8 – 2.4 0.093 0.56 – 1.2 < 0.001 1.3 – 2.1 0.037 0.9 – 1.8 < 0.001 2.0 – 2.5 0.011 2.2 – 2.6 0.30 2.8 – 3.0 0.22
MORITA ET AL.
P
890
Discussion
This is one of the largest analyses to explore the difference in symptom burden, achievement of good death, perceived quality of care, and caregiving burden between elderly and younger cancer patients. The most important message from this analysis is that older cancer patients show essentially the same levels of symptom burden and achievement of good death. This is consistent with the major conclusion from previous studies that the difference between older and younger patients is less than expected and they have the same levels of palliative care needs.5,7,9 Also, this finding is consistent with our previous analysis that patients age 60 or older experienced less severe pain and nausea but more severe emotional distress.19 These findings strongly indicate that palliative care clinicians should not underestimate the palliative care needs of older patients. A lower intensity of reported nausea and pain are generally consistent findings. In the existing literature, nausea was observed at a lower frequency or intensity in older compared to younger patients in multiple studies,3,4,5,12 while other studies identified no difference.7–11 Similarly, pain was observed at a lower frequency or intensity in older compared to younger patients in some studies,4,8,10–12 while other studies identified no difference.3,5,7 In addition, many studies revealed that opioid use was lower in older compared to younger patients.14–16 In this study, in two samples of outpatients receiving chemotherapy and terminally ill cancer patients, pain was significantly less severe in older patients, but there was no difference in pain intensity in metastatic outpatients. The potential interpretations is that the metastatic outpatients were generally good condition, e.g., asymptomatic patients receiving only monitoring after surgical treatment, and thus pain prevalence itself was low.21 These findings suggest that the frequency and/or intensity of nausea and pain may be lower in older patients, after adjustment for sex and primary tumor site. The underlying mechanism would include physiological differences in sensitivity to each symptom and/or underreporting by patients themselves. Any future study should focus on the reason older patients reported lower levels of nausea and pain.
891
6.1 – 1.2 4.1 – 1.9 5.6 – 1.5 5.8 – 1.4 5.8 – 1.3 5.9 – 1.1 5.4 – 1.4 4.5 – 1.0 —
4.4 – 1.9 5.8 – 1.3 6.2 – 1.2 5.9 – 1.2 5.9 – 1.2 5.2 – 1.5 4.5 – 1.0 —
5.6 – 1.5 5.4 – 1.5 5.4 – 1.5 5.8 – 1.2 5.2 – 1.5
5.7 – 1.4 5.4 – 1.5 5.3 – 1.5 6.0 – 1.2 5.4 – 1.5 6.0 – 1.1
1.9 – 2.4
2.0 – 2.5
0.81
0.033
0.42
< 0.001 0.25
< 0.001 0.003
0.15
0.14 0.85 0.12 0.026 0.002
0.28
P
< 0.001
0.002 0.004
0.001
4.2 – 1.1 4.0 – 1.5
4.2 – 1.6
5.6 – 1.3
4.1 – 2.0 4.7 – 1.5
4.3 – 1.6 4.5 – 1.6
5.4 – 1.4
3.8 – 1.8 3.6 – 1.7 3.8 – 1.7 4.2 – 1.8 3.7 – 1.7
—
4.3 – 1.1 4.0 – 1.5
4.9 – 1.4
5.6 – 1.2
3.6 – 2.0 4.7 – 1.4
4.1 – 1.6 4.7 – 1.5
5.4 – 1.4
4.3 – 1.7 4.0 – 1.7 4.1 – 1.6 4.2 – 1.8 3.5 – 1.6
—
Adjusted P < 70 (492) ‡ 70 (966)
0.27 0.91
< 0.001
0.96
< 0.001 0.71
0.18 0.25
0.88
< 0.001 < 0.001 < 0.001 0.64 0.032
P
Hospital death
Bold: higher level of distress in older than younger patients; italics: lower level of distress in older than younger patients
Pain Good death Pain Physical comfort Psychological comfort Living in a favorite place Maintaining hope and pleasure Having a good relationship with medical staff Feeling a burden to others Having a good relationship with family Having independence Having environmental comfort Being respected as an individual Feeling of fulfillment at life’s completion Perceived quality of care Caregiver burden
Age < 70 (n = 937) ‡ 70 (779)
Metastasis outpatients
< 0.001
< 0.001 < 0.001 < 0.001
4.9 – 0.9 3.8 – 1.7
4.8 – 1.7
6.3 – 0.9
4.2 – 1.9 5.9 – 1.1
4.4 – 1.6 5.5 – 1.4
6.0 – 1.0
4.7 – 1.7 4.2 – 1.6 4.8 – 1.5 6.3 – 1.0 4.9 – 1.6
—
4.8 – 1.1 3.8 – 1.5
5.4 – 1.3
6.2 – 0.9
3.2 – 2.0 5.9 – 1.0
4.3 – 1.6 5.6 – 1.3
6.0 – 1.0
5.0 – 1.4 4.8 – 1.4 5.2 – 1.4 6.2 – 1.1 4.6 – 1.6
—
0.49 0.79
0.12
0.17
< 0.001 0.81
0.40 0.73
0.93
0.11 0.003 0.87 0.52 0.14
P
Home death Adjusted P < 70 (98) ‡ 70 (195)
Terminally ill patients
Table 3. Achievement of Good Death of Metastasis Outpatients and Terminally Ill Patients
< 0.001
0.002
Adjusted P
892
MORITA ET AL.
Table 4. Summary of the Results: Effect Sizes of the Differences Outpatients receiving chemotherapy
Pain Dyspnea Nausea Fatigue Somnolence Emotional distress Maintaining hope and pleasure Feeling a burden to others Having a good relationship with family Having independence
Terminally ill patients
Lung (n = 2,198)
Breast (1,552)
Colon (1,390)
Stomach (1,277)
Metastasis outpatients (1,716)
0.19 0.21 0.13 0.37 — — —
— — 0.27 — 0.16 0.20 —
— — 0.19 0.16 0.11 — —
0.28 — 0.26 — — — —
— — — — — — 0.13
0.28 — — — — — —
— — — — — — —
— —
— —
— —
— —
0.16 0.15
— —
— —
—
—
—
—
0.33
0.25
0.53
Hospital death (590)
Home death (1,161)
Bold: higher level of distress in older than younger patients; italics: lower level of distress in older than younger patients
On the other hand, this study revealed that older patients reported higher levels of dyspnea and fatigue. In the existing literature, the frequency and intensity of dyspnea were not different between the age groups3,8,9,11,12 in some studies and were lower in older patients in other studies.5,10 This inconsistency could be explained by the fact that a difference was observed only in the lung cancer population in this study, but other studies analyzed cancer patients with various primary tumor sites. Comorbidities such as chronic obstructive pulmonary disease could be underlying pathologies leading to the increase in dyspnea severity in older lung cancer patients. One study demonstrated that the intensity of fatigue was higher in older patients,3 consistent with this study, while one study revealed no difference.10 These findings suggest that in older patients, especially lung cancer populations, dyspnea and fatigue could be two dominant symptoms, and intervention including a nonpharmacological rehabilitation program specifically designed for older patients is necessary. This study also revealed that some areas of good death should be more fully explored in terms of caring for older cancer patients. Older patients reported a lower achievement of maintaining hope and pleasure, the relationship with the family potentially resulting in loneliness, and being independent. This finding suggests that a palliative care program specifically including these areas may be beneficial for older patients, e.g., ensuring the opportunity to participate in daily activities to promote a sense of pleasure, increasing family and social interaction, and rehabilitation for maintaining independence. On the other hand, older patients reported lower levels of feeling a burden to others in this study. This finding is consistent with another study whereby older patients were less likely to regard ‘‘not feeling a burden to others’’ as a component of the good death in an older Japanese population.17 The interpretation of this finding is that older patients may accept physical decline and assistance from others more naturally as a part of natural aging than a younger population. Despite the several strengths of this study, including the large sample size from different settings, this study has several limitations. First, as the study procedure was a questionnaire survey, patients with dementia and/or unrecognized cognitive disturbance would be excluded in two of the three
databases. The findings of this study should thus be interpreted as the results of older patients being capable of completing a questionnaire. Second, we did not obtain data from nonresponding patients, and there may be differences in patient backgrounds between respondents and nonrespondents (e.g., older patients could have lower response rates). The patients who had not responded to the questionnaires may have different answers compared to those who responded to the questionnaires. Finally, in the first sample, the questionnaires were distributed on every hospital visit, and the reported symptoms would include both the symptoms due to cancer and the symptoms due to side effects of chemotherapy. Potential difference in the chemotherapy regimens could also affect the results. Conclusions
In conclusion, although older patients experienced generally lower levels of nausea and pain, some older patients experienced higher levels of dyspnea, fatigue, emotional distress, needs for information and help with decision making, loss of hope and pleasure, and independence. Older cancer patients need at least the same levels of palliative care. Especially, symptom management targeted to dyspnea and fatigue, help with decision making using individualized tools, and rehabilitation programs to address daily activities and increase interaction and independence seem to be important for older cancer patients. Acknowledgment and Author Disclosure Statement
This work was supported in part by a Grant-in-Aid for Cancer Research from the Ministry of Labor, Health and Welfare in Japan. The authors have no other financial disclosures. References
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31. 32. 33.
Yamaguchi T, Eguchi K: Effects of a programme of interventions on regional comprehensive palliative care for patients with cancer: A mixed-methods study. Lancet Oncol 2013;14:638–646. Yamagishi A, Morita T, Miyashita M, et al.: Pain intensity, quality of life, quality of palliative care, and satisfaction in outpatients with metastatic or recurrent cancer: A Japanese, nationwide, region-based, multicenter survey. J Pain Symptom Manage 2012;43:503–514. Okuyama T, Wang XS, Akechi T, et al.: Japanese version of the MD Anderson Symptom Inventory: A validation study. J Pain Symptom Manage 2003;26:1093–1104. Akizuki N, Akechi T, Nakanishi T, et al.: Development of a brief screening interview for adjustment disorders and major depression in patients with cancer. Cancer 2003;97: 2605–2663. Morita T, Fujimoto K, Namba M, et al.: Palliative care needs of cancer outpatients receiving chemotherapy: An audit of a clinical screening project. Support Care Cancer 2008;16:101–107. Uki J, Mendoza T, Cleeland CS, et al.: A brief cancer pain assessment tool in Japanese: The utility of the Japanese Brief Pain Inventory—BPI-J. J Pain Symptom Manage 1998; 16:364–373. Miyashita M, Wada M, Morita T, et al.: Reliability and validity of the Good Death Inventory patient version: Proceedings of the 15th congress of the Japanese Society of Palliative Medicine. Tokyo, Japan. Miyashita M, Wada M, Morita T, et al.: Reliability and validity of the care evaluation scale patient version: Proceedings of the 15th congress of the Japanese Society of Palliative Medicine. Tokyo, 2010. Miyashita M, Morita T, Sato K, et al.: Good Death Inventory: A measure for evaluating good death from the bereaved family member’s perspective. J Pain Symptom Manage 2008;35:486–498. Morita T, Hirai K, Sakaguchi Y, et al.: Measuring the quality of structure and process in end-of-life care from the bereaved family perspective. J Pain Symptom Manage 2004; 27:492–501. Sanjo M, Morita T, Miyashita M, et al.: Caregiving Consequences Inventory: A measure for evaluating caregiving consequences from the bereaved family member’s perspective. Psychooncology 2009;18:657–666. Balducci L: Geriatric oncology: Challenges for the new century. Eur J Cancer 2000;36:1741–1754. Hedges LV, Olkin I: Statistical methods for meta-analysis. Orlando, FL: Academic Press, 1985. Cohen J: A power primer. Psychol Bull 1992;112:155–159.
Address corresponcence to: Tatsuya Morita, MD Department of Palliative and Supportive Care Seirei Mikatahara General Hospital 3453 Mikatahara-cho, Kita-ku Hamamatsu, Shizuoka Japan 433-8558 E-mail: [email protected]
Original Articles
Symptom Burden and Achievement of Good Death of Elderly Cancer Patients Tatsuya Morita, MD,1 Meiko Kuriya, MD,2 Mitsunori Miyashita, RN, PhD,3 Kazuki Sato, RN, PHN, PhD,3 Kenji Eguchi, MD, PhD,4 and Tatsuo Akechi, MD, PhD 5
Abstract
Background: The aim of this study was to compare the symptom burden and achievement of good death of elderly cancer patients with that of younger patients. Methods: Secondary analysis of three large databases was performed: (1) 7449 cancer outpatients receiving chemotherapy, (2) 1716 outpatients with metastatic cancer, and (3) 1751 terminally ill cancer patients who died in hospitals or at home. Outcome measures used included the M.D. Anderson Symptom Inventory, Brief Pain Inventory, and Good Death Inventory. Results: In cancer outpatients receiving chemotherapy, older patients reported significantly higher levels of dyspnea and fatigue (lung cancer), emotional distress (breast cancer), and unmet needs regarding information and help with decision making (stomach cancer); however, the intensity of nausea was significantly lower across the four primary tumor sites, and intensity of pain was significantly lower in lung cancer. In outpatients with metastatic cancer, older patients reported lower levels of ‘‘maintaining hope and pleasure,’’ ‘‘a good relationship with the family,’’ and ‘‘independence,’’ while there was no significant difference in the pain intensity. In terminally ill cancer patients, proxy family members reported significantly lower levels of ‘‘independence,’’ while they reported significantly lower levels of pain, physical discomfort, and psychological discomfort. Conclusions: Older cancer patients need at least the same levels of palliative care; while they experienced generally lower levels of nausea and pain, some older patients experienced higher levels of dyspnea, fatigue, emotional distress, need for information, help with decision making, loss of hope and pleasure, and independence.
Introduction
M
any countries including Japan are experiencing marked increases in the aged population, and cancer is the leading cause of death among elderly patients.1 This indicates that understanding patients’ experiences in their end-of-life stage is necessary to provide better palliative care for elderly patients. Some studies to date have reported differences in the symptom burden and quality of life at the end-of-life stage in older palliative care patients.2–16 These studies investigated the symptom prevalence and palliative medications of advanced cancer populations, but few studies reported the achievement of good death reported by patients, although
good death is one of the important goals for terminally ill cancer patients.17,18 Furthermore, no studies included cancer patients from various settings: outpatient chemotherapy setting, outpatient setting, and inpatient/home setting. In addition, there were no Asian studies. We believe, therefore, that clarifying the symptom burden and achievement of good death of Japanese elderly cancer patients in an outpatient chemotherapy setting, outpatient setting, and inpatient/home setting is of value for a better understanding of the total experience of older cancer patients. The primary aim of this study, thus, was to compare the symptom burden and achievement of good death of elderly cancer patients with that of younger patients.
1
Department of Palliative Care and Supportive Care, Seirei Mikatahara General Hospital, Hamamatsu, Japan. Department of Palliative Medicine, Teikyo University School of Medicine, Tokyo, Japan. Department of Palliative Nursing, Tohoku University Graduate School of Medicine, Sendai, Japan. 4 Department of Internal Medicine and Medical Oncology, Teikyo University School of Medicine, Tokyo, Japan. 5 Department of Psychiatry and Cognitive-Behavioral Medicine, Nagoya City University Graduate School of Medical Sciences, Nagoya, Japan. Accepted February 4, 2014. 2 3
887
888 Methods
This study was a secondary analysis of three previous studies.19–21 First database: outpatients receiving chemotherapy
The first was a cross-sectional survey involving all cancer outpatients newly starting chemotherapy in a designated cancer hospital in Japan.19 Inclusion criteria were (1) cancer patients newly starting chemotherapy in outpatient settings; (2) primary tumor sites of the lung, gastrointestine, pancreas, bile duct, breast, ovary, and uterus; and (3) consent from the patient. Exclusion criteria included (1) inability of the patient to complete the questionnaire (dementia, cognitive failure, or psychiatric illness) and (2) language difficulty or visual loss. A previous study reported the results in the early phase of this survey (2006 to 2007), and the current study used the pooled data during three years (2006 to 2009) using the same methodology. Questionnaires were distributed to consecutive cancer patients on every hospital visit. We examined (1) 0–10 numeric rating scales of six physical symptoms (worst pain, dyspnea, nausea, anorexia, somnolence, fatigue) adopted from the Japanese version of the M.D. Anderson Symptom Inventory (MDASI);22 (2) the Distress Thermometer to measure the degree of distress;23 and (3) presence or absence of unmet needs in three areas: information about treatment and decision making, economic problems, and daily activities.24 Second database: outpatients with metastatic cancer
The second involved cross-sectional surveys on outpatients performed in the regional palliative care intervention trial, the Outreach Palliative Care Trial of Integrated Regional Model (OPTIM) study.20,21 Study participants were recruited from 34 hospitals of four areas as a nearly representative sample of cancer outpatients in each region. Inclusion criteria were (1) adult cancer patients with a primary tumor site in either the lung, esophagus, stomach, colon, rectum, pancreas, liver, biliary system, kidney, prostate, bladder, breast, ovary, or uterus; (2) presence of metastatic cancer; (3) outpatient visits to the oncology department or each specialty division, such as respiratory medicine for lung cancer patients, between April and June 2008 (not palliative care division only); and (4) informed of malignancy. Exclusion criteria included (1) inability of the patient to complete the questionnaire (dementia, cognitive failure, or psychiatric illness); (2) severe emotional distress of the patient as determined by the principal treating; (3) poor physical condition meaning unable to complete the questionnaire; and (4) language difficulty or visual loss. Data were collected on (1) pain intensity, (2) achievement of good death, and (3) patient-reported quality of care. Pain intensity was measured using the Japanese adaptation of the Brief Pain Inventory, with a score given for the pain at its worst in the previous 24 hours.25 Achievement of good death was measured using the Good Death Inventory, patient version.26 The Good Death Inventory was developed to specifically measure the quality of life of Japanese patients with advanced cancer, including 10 domains from comfort to psycho-existential well-being, with a seven-point Likert-type scale from ‘‘1: strongly
MORITA ET AL.
disagree’’ to ‘‘7: strongly agree.’’ The score ranges from 1 to 7, and higher values indicate higher levels of quality of life. For this study, three items were included in the comfort domain (pain, physical comfort, and psychological comfort) and nine other domains were used. The patient-reported quality of care was measured using the Care Evaluation Scale, patient version.27 The Care Evaluation Scale is a well-validated tool to quantify the level of patient-perceived need for improvements in palliative care. The Care Evaluation Scale consists of eight subscales (physical care provided by physicians, physical care provided by nurses, psycho-existential care, help with decision making, coordination/consistency of care, environment, availability, and cost), and, for this study, the total score was used. The score ranges from 1 to 7, and higher values indicate a lower perception of the necessity for improvement. Third database: terminally ill patients (proxy survey on bereaved family members)
The third was a database of cross-sectional surveys on bereaved family members performed for the OPTIM study.20 Study participants were recruited from 23 hospitals and 16 home-care clinics of four areas as a nearly representative sample of cancer death in each region (39% of all deaths covered). Inclusion criteria were (1) bereaved adult family members of an adult cancer patient who died in the institution or at home (one family member was selected for each patient); (2) a primary tumor site of either the lung, esophagus, stomach, colon, rectum, pancreas, liver, biliary system, kidney, prostate, bladder, breast, ovary, or uterus; (3) received medical treatments on three or more days by the institution; and (4) informed of malignancy. Exclusion criteria included (1) incapacity to complete the questionnaire, (2) severe emotional distress of the family as determined by the principal treating physicians, (3) treatment-associated death or death from comorbidity, (4) death in intensive care units, and (5) family member unavailable. Data were collected on (1) achievement of good death, (2) family-reported quality of care, and (3) care-giving burden. Achievement of good death was measured using the Good Death Inventory,28 and the family-reported quality of care was measured using the Care Evaluation Scale.29 The caregiving burden was measured using the Caregiving Consequences Inventory.30 The Caregiving Consequences Inventory quantified caregiving consequences from a bereaved family member’s perspective, and a higher score indicates a higher perceived burden, with potential ranges of 1 to 5. Ethical approval
All studies were approved by the institutional review boards of all participating institutions. The first database was constructed as a part of routine clinical practice, and fulfillment of the questionnaire was regarded as patient consent. The other databases were constructed as a part of an intervention trial, and return of the questionnaire was regarded as participant consent. Statistical analyses
For comparisons, we had acknowledged different cutoff points might result in different conclusions, and we decided
< 0.001 (25%) (21%) (10%) (8.1%) (5.6%) (20%) (5.8%) (4.2%)
324 215 106 25 89 335 23 44
742 (64%) 404 (35%)
146 123 61 48 33 120 34 25 (33%) (23%) (17%) (11%) (2.0%) (9.9%) (0.2%) (3.8%) 903 622 460 285 54 266 5 102 (27%) (14%) (20%) (27%) (0.7%) (7.5%) (1.6%) (2.9%) 1,295 655 930 1,267 33 355 78 139
1,659 (62%) 1,038 (38%) 2,203 (46%) 2,549 (54%)
< 0.001
< 0.001
234 87 159 212 73 83 76 13
453 (48%) 484 (52%)
(25%) (9.3%) (17%) (23%) (7.8%) (8.9%) (8.1%) (1.4%)
210 84 98 61 181 94 36 15
539 (69%) 240 (31%)
(27%) (11%) (13%) (7.8%) (23%) (12%) (4.6%) (1.9%)
< 0.001
< 0.001
360 (61%) 225 (38%)
45 (7.6%) 156 (26%) 389 (66%) — — < 0.001 77 – 4.5 — — — — — 60 – 8.1 — — — — — < 0.001 75 – 4.1 (75) — — — — — 58 – 8.1 (59) — — — — —
- 49 50–59 60–69 70–79 80– Sex Male Female Primary tumor sites Lung Stomach Colon Breast Prostate, kidney, bladder Liver, pancreas, bile ducts Ovary, uterus Others, unknown
Age
(28%) (19%) (9.1%) (2.2%) (7.7%) (29%) (2.0%) (3.8%)
0.19
< 0.001 — — — 624 (54%) 537 (46%)
‡ 70 (1,161) < 70 (590) < 70 (937)
‡ 70 (779)
P
Terminally ill patients Metastasis outpatients
P ‡ 70 (2,697) Age < 70 (n = 4,752)
For cancer outpatients receiving chemotherapy, we finally obtained a total of 7449 patients, 4752 in the younger group and 2697 in the older group, from a total of 8662 patients (response rate, 86%). For outpatients with metastatic cancer, of 4003 patients who met the inclusion criteria, 1002 patients were excluded and 3001 questionnaires were sent. Twelve questionnaires were returned due to the wrong address, and a total of 1716 responses (937 in the younger group and 779 in the older group) were analyzed (effective response rate, 58%). For terminally ill cancer patients, of 4228 patients who met the inclusion criteria, 794 were excluded and 3434 questionnaires were sent to bereaved family members. Ninetyfour questionnaires were returned due to the wrong address, and a total of 2247 responses were obtained (effective response rate, 68%). This study analyzed 1751 patients who died in hospitals or at home (492 in the younger group and 966 in the older group; 98 in the younger group and 195 in the older group, respectively). Table 1 summarizes subject backgrounds. In outpatients receiving chemotherapy (see Table 2), older patients reported significantly higher levels of dyspnea (lung cancer), fatigue (lung and colon cancer), emotional distress (breast cancer), and unmet needs regarding information and help with decision making (stomach cancer). The intensity of nausea was significantly lower across four primary tumor sites, and the intensity of pain was significantly lower in lung and stomach cancer. In outpatients with metastatic cancer (see Table 3), regarding the achievement of good death, older patients reported lower levels of ‘‘maintaining hope and pleasure,’’ ‘‘a
Outpatients receiving chemotherapy
Results
Table 1. Backgrounds
to use 70 years of age as the cutoff in this study on the basis of recommendations from geriatric oncology, given that many age-related changes occur after this age.31 Other cutoff points (i.e., 65 and 75) achieved essentially the same results. We had determined the significance level was conservatively set at P = 0.01, as we performed multiple comparisons. For patients receiving chemotherapy we compared the symptom intensity and prevalence of unmet needs between older and younger patients with lung, colon, breast, and stomach cancer, respectively, because the age was significantly associated with the primary tumor site. P-values were adjusted by sex. For metastatic outpatients we compared pain intensity, achievement of good death, and perceived quality of care between older and younger patients; and we calculated adjusted P-values by the primary tumor site and sex for items with a significant difference. For terminally ill patients we compared the achievement of good death, perceived quality of care, and caregiving burden between older and younger patients who died in hospital and at home, respectively; and we calculated adjusted P-values by the primary tumor site and sex for items with a significant difference. To summarize the difference between older patients and younger patients, we calculated Hedges’ g to estimate the effect size. Effect sizes of 0.2, 0.5, and 0.8 were regarded as small, moderate, and large effects, respectively.32,33 All analyses were performed using SPSS 12.0 (IBM, Armonk, NY).
889
P
SYMPTOM BURDEN OF ELDERLY PATIENTS
0.6% (4) 0.8% (5) 8.2% (54) 9.5% (59)
0.68 0.44
good relationship with the family,’’ and ‘‘independence.’’ There was no significant difference in the pain intensity and perceived quality of care. On the other hand, older patients reported lower levels of ‘‘feeling a burden to others.’’ In terminally ill cancer patients (see Table 3), proxy family members reported significantly lower levels of ‘‘independence’’ in both older patients who died in hospitals and at home, while they reported significantly lower levels of pain, physical discomfort, and psychological discomfort. Table 4 summarizes the effect sizes of the items investigated. Older patients in some groups experienced lower levels of nausea, pain, and feeling a burden to others; but they experienced higher levels of dyspnea, fatigue, emotional distress, needs for information and help with decision making, loss of hope and pleasure, and independence. There were no significant differences between older and younger patients in other variables, and, in the case of a significant difference, the absolute difference was not large (i.e., effect sizes were < 0.30). Bold: higher level of distress in older than younger patients; italics: lower level of distress in older than younger patients
0.7% (2) 1.4% (4) 1.0% (9) 4.2% (38) 2.3% (n = 30) 3.8% (n = 49)
0.02 0.61
1.9% (18) 4.1% (19) 6.4% (59) 7.0% (32)
0.016 1.3% (17) 0.65 3.3% (42)
0.38 0.09
0.007 11% (75) 17% (104) 11% (32) 12% (107) 11% (n = 138)
0.37
9.3% (86) 9.8% (45)
0.73
11% (133)
0.69
0.50 3.1 – 2.5 3.0 – 2.6 0.005 3.3 – 2.6 2.8 – 2.5 0.99 2.6 – 2.8 2.2 – 2.7 0.46 2.4 – 2.7 2.4 – 2.5
1.9 – 2.6 0.045 2.3 – 2.8 1.1 – 1.6 0.099 0.92 – 1.3 1.0 – 1.7 0.89 1.5 – 2.1 0.24 – 0.9 < 0.001 1.5 – 2.3 0.79 – 1.6 0.18 2.4 – 2.8 1.3 – 2.0 < 0.001 1.9 – 2.1 1.9 – 2.1 0.45 2.8 – 2.6 2.0 – 2.4 0.85 – 1.5 0.95 – 1.7 0.64 – 1.5 1.0 – 1.8 1.6 – 1.9 1.9 – 2.1 1.8 – 2.5 < 0.001 2.2 – 2.7 1.8 – 2.4 0.087 0.80 – 1.5 0.65 0.99 – 1.5 0.77 – 1.2 0.11 1.6 – 2.3 0.005 0.8 – 1.4 0.9 – 1.7 0.77 0.50 – 1.5 < 0.001 0.92 – 1.6 0.61 – 1.4 < 0.001 1.4 – 2.2 0.005 1.4 – 2.1 1.3 – 2.0 0.51 1.5 – 2.2 0.52 1.3 – 1.8 1.5 – 1.8 0.003 2.1 – 2.4 < 0.001 1.5 – 1.9 1.8 – 2.0 0.001 2.3 – 2.6 0.70 – 1.1 1.2 – 1.9 0.72 – 1.7 1.5 – 2.3 1.3 – 1.7 1.4 – 1.9
Physical Symptoms Worst pain Least pain Dyspnea Nausea Anorexia Somnolence Fatigue Psychological problems Emotional distress Unmet needs Information and help with decision making Economic problems Daily activity
< 70 (655) ‡ 70 (622) Age < 70 (n = 1,295) ‡ 70 (903)
P
< 70 (930) ‡ 70 (460)
P
< 70 (1,267) ‡ 70 (285)
P
Stomach Breast Colon Lung
Table 2. Symptom Prevalence in Outpatients Receiving Chemotherapy
1.8 – 2.4 0.093 0.56 – 1.2 < 0.001 1.3 – 2.1 0.037 0.9 – 1.8 < 0.001 2.0 – 2.5 0.011 2.2 – 2.6 0.30 2.8 – 3.0 0.22
MORITA ET AL.
P
890
Discussion
This is one of the largest analyses to explore the difference in symptom burden, achievement of good death, perceived quality of care, and caregiving burden between elderly and younger cancer patients. The most important message from this analysis is that older cancer patients show essentially the same levels of symptom burden and achievement of good death. This is consistent with the major conclusion from previous studies that the difference between older and younger patients is less than expected and they have the same levels of palliative care needs.5,7,9 Also, this finding is consistent with our previous analysis that patients age 60 or older experienced less severe pain and nausea but more severe emotional distress.19 These findings strongly indicate that palliative care clinicians should not underestimate the palliative care needs of older patients. A lower intensity of reported nausea and pain are generally consistent findings. In the existing literature, nausea was observed at a lower frequency or intensity in older compared to younger patients in multiple studies,3,4,5,12 while other studies identified no difference.7–11 Similarly, pain was observed at a lower frequency or intensity in older compared to younger patients in some studies,4,8,10–12 while other studies identified no difference.3,5,7 In addition, many studies revealed that opioid use was lower in older compared to younger patients.14–16 In this study, in two samples of outpatients receiving chemotherapy and terminally ill cancer patients, pain was significantly less severe in older patients, but there was no difference in pain intensity in metastatic outpatients. The potential interpretations is that the metastatic outpatients were generally good condition, e.g., asymptomatic patients receiving only monitoring after surgical treatment, and thus pain prevalence itself was low.21 These findings suggest that the frequency and/or intensity of nausea and pain may be lower in older patients, after adjustment for sex and primary tumor site. The underlying mechanism would include physiological differences in sensitivity to each symptom and/or underreporting by patients themselves. Any future study should focus on the reason older patients reported lower levels of nausea and pain.
891
6.1 – 1.2 4.1 – 1.9 5.6 – 1.5 5.8 – 1.4 5.8 – 1.3 5.9 – 1.1 5.4 – 1.4 4.5 – 1.0 —
4.4 – 1.9 5.8 – 1.3 6.2 – 1.2 5.9 – 1.2 5.9 – 1.2 5.2 – 1.5 4.5 – 1.0 —
5.6 – 1.5 5.4 – 1.5 5.4 – 1.5 5.8 – 1.2 5.2 – 1.5
5.7 – 1.4 5.4 – 1.5 5.3 – 1.5 6.0 – 1.2 5.4 – 1.5 6.0 – 1.1
1.9 – 2.4
2.0 – 2.5
0.81
0.033
0.42
< 0.001 0.25
< 0.001 0.003
0.15
0.14 0.85 0.12 0.026 0.002
0.28
P
< 0.001
0.002 0.004
0.001
4.2 – 1.1 4.0 – 1.5
4.2 – 1.6
5.6 – 1.3
4.1 – 2.0 4.7 – 1.5
4.3 – 1.6 4.5 – 1.6
5.4 – 1.4
3.8 – 1.8 3.6 – 1.7 3.8 – 1.7 4.2 – 1.8 3.7 – 1.7
—
4.3 – 1.1 4.0 – 1.5
4.9 – 1.4
5.6 – 1.2
3.6 – 2.0 4.7 – 1.4
4.1 – 1.6 4.7 – 1.5
5.4 – 1.4
4.3 – 1.7 4.0 – 1.7 4.1 – 1.6 4.2 – 1.8 3.5 – 1.6
—
Adjusted P < 70 (492) ‡ 70 (966)
0.27 0.91
< 0.001
0.96
< 0.001 0.71
0.18 0.25
0.88
< 0.001 < 0.001 < 0.001 0.64 0.032
P
Hospital death
Bold: higher level of distress in older than younger patients; italics: lower level of distress in older than younger patients
Pain Good death Pain Physical comfort Psychological comfort Living in a favorite place Maintaining hope and pleasure Having a good relationship with medical staff Feeling a burden to others Having a good relationship with family Having independence Having environmental comfort Being respected as an individual Feeling of fulfillment at life’s completion Perceived quality of care Caregiver burden
Age < 70 (n = 937) ‡ 70 (779)
Metastasis outpatients
< 0.001
< 0.001 < 0.001 < 0.001
4.9 – 0.9 3.8 – 1.7
4.8 – 1.7
6.3 – 0.9
4.2 – 1.9 5.9 – 1.1
4.4 – 1.6 5.5 – 1.4
6.0 – 1.0
4.7 – 1.7 4.2 – 1.6 4.8 – 1.5 6.3 – 1.0 4.9 – 1.6
—
4.8 – 1.1 3.8 – 1.5
5.4 – 1.3
6.2 – 0.9
3.2 – 2.0 5.9 – 1.0
4.3 – 1.6 5.6 – 1.3
6.0 – 1.0
5.0 – 1.4 4.8 – 1.4 5.2 – 1.4 6.2 – 1.1 4.6 – 1.6
—
0.49 0.79
0.12
0.17
< 0.001 0.81
0.40 0.73
0.93
0.11 0.003 0.87 0.52 0.14
P
Home death Adjusted P < 70 (98) ‡ 70 (195)
Terminally ill patients
Table 3. Achievement of Good Death of Metastasis Outpatients and Terminally Ill Patients
< 0.001
0.002
Adjusted P
892
MORITA ET AL.
Table 4. Summary of the Results: Effect Sizes of the Differences Outpatients receiving chemotherapy
Pain Dyspnea Nausea Fatigue Somnolence Emotional distress Maintaining hope and pleasure Feeling a burden to others Having a good relationship with family Having independence
Terminally ill patients
Lung (n = 2,198)
Breast (1,552)
Colon (1,390)
Stomach (1,277)
Metastasis outpatients (1,716)
0.19 0.21 0.13 0.37 — — —
— — 0.27 — 0.16 0.20 —
— — 0.19 0.16 0.11 — —
0.28 — 0.26 — — — —
— — — — — — 0.13
0.28 — — — — — —
— — — — — — —
— —
— —
— —
— —
0.16 0.15
— —
— —
—
—
—
—
0.33
0.25
0.53
Hospital death (590)
Home death (1,161)
Bold: higher level of distress in older than younger patients; italics: lower level of distress in older than younger patients
On the other hand, this study revealed that older patients reported higher levels of dyspnea and fatigue. In the existing literature, the frequency and intensity of dyspnea were not different between the age groups3,8,9,11,12 in some studies and were lower in older patients in other studies.5,10 This inconsistency could be explained by the fact that a difference was observed only in the lung cancer population in this study, but other studies analyzed cancer patients with various primary tumor sites. Comorbidities such as chronic obstructive pulmonary disease could be underlying pathologies leading to the increase in dyspnea severity in older lung cancer patients. One study demonstrated that the intensity of fatigue was higher in older patients,3 consistent with this study, while one study revealed no difference.10 These findings suggest that in older patients, especially lung cancer populations, dyspnea and fatigue could be two dominant symptoms, and intervention including a nonpharmacological rehabilitation program specifically designed for older patients is necessary. This study also revealed that some areas of good death should be more fully explored in terms of caring for older cancer patients. Older patients reported a lower achievement of maintaining hope and pleasure, the relationship with the family potentially resulting in loneliness, and being independent. This finding suggests that a palliative care program specifically including these areas may be beneficial for older patients, e.g., ensuring the opportunity to participate in daily activities to promote a sense of pleasure, increasing family and social interaction, and rehabilitation for maintaining independence. On the other hand, older patients reported lower levels of feeling a burden to others in this study. This finding is consistent with another study whereby older patients were less likely to regard ‘‘not feeling a burden to others’’ as a component of the good death in an older Japanese population.17 The interpretation of this finding is that older patients may accept physical decline and assistance from others more naturally as a part of natural aging than a younger population. Despite the several strengths of this study, including the large sample size from different settings, this study has several limitations. First, as the study procedure was a questionnaire survey, patients with dementia and/or unrecognized cognitive disturbance would be excluded in two of the three
databases. The findings of this study should thus be interpreted as the results of older patients being capable of completing a questionnaire. Second, we did not obtain data from nonresponding patients, and there may be differences in patient backgrounds between respondents and nonrespondents (e.g., older patients could have lower response rates). The patients who had not responded to the questionnaires may have different answers compared to those who responded to the questionnaires. Finally, in the first sample, the questionnaires were distributed on every hospital visit, and the reported symptoms would include both the symptoms due to cancer and the symptoms due to side effects of chemotherapy. Potential difference in the chemotherapy regimens could also affect the results. Conclusions
In conclusion, although older patients experienced generally lower levels of nausea and pain, some older patients experienced higher levels of dyspnea, fatigue, emotional distress, needs for information and help with decision making, loss of hope and pleasure, and independence. Older cancer patients need at least the same levels of palliative care. Especially, symptom management targeted to dyspnea and fatigue, help with decision making using individualized tools, and rehabilitation programs to address daily activities and increase interaction and independence seem to be important for older cancer patients. Acknowledgment and Author Disclosure Statement
This work was supported in part by a Grant-in-Aid for Cancer Research from the Ministry of Labor, Health and Welfare in Japan. The authors have no other financial disclosures. References
1. Given B, Given CW: Older adults and cancer treatment. Cancer 2008;113:3505–3511. 2. Teunissen SCCM, Wesker W, Kruitawagen C, et al.: Symptom prevalence in patients with incurable cancer: A
SYMPTOM BURDEN OF ELDERLY PATIENTS
3. 4.
5.
6. 7. 8. 9.
10. 11. 12. 13. 14. 15. 16.
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Address corresponcence to: Tatsuya Morita, MD Department of Palliative and Supportive Care Seirei Mikatahara General Hospital 3453 Mikatahara-cho, Kita-ku Hamamatsu, Shizuoka Japan 433-8558 E-mail: [email protected]
