Vol.
-
No.
- -
2013
Journal of Pain and Symptom Management 1
Brief Methodological Report
Care Evaluation ScaledPatient Version: Measuring the Quality of the Structure and Process of Palliative Care From the Patient’s Perspective Mitsunori Miyashita, RN, PhD, Makoto Wada, MD, Tatsuya Morita, MD, Mayumi Ishida, PhD, Hideki Onishi, MD, PhD, Satoru Tsuneto, MD, PhD, and Yasuo Shima, MD, PhD Division of Palliative Nursing (M.M.), Health Sciences, Tohoku University Graduate School of Medicine, Sendai; Department of Adult Nursing/Palliative Care Nursing (M.M.), School of Health Sciences and Nursing Sciences, Graduate School of Medicine, The University of Tokyo; Department of Psycho-Oncology and Palliative Medicine (M.W.), Osaka Medical Center for Cancer and Cardiovascular Diseases, Osaka; Department of Palliative and Supportive Care, Palliative Care Team and Seirei Hospice (T.M.), Seirei Mikatahara Hospital, Shizuoka; Department of Psycho-Oncology (M.I., H.O.), Saitama Cancer Center, Saitama; Department of Palliative Medicine (S.T.), Osaka University Graduate School of Medicine, Osaka; and Department of Palliative Medicine (Y.S.), Tsukuba Medical Center Hospital, Ibaraki, Japan
Abstract Context. Recently, greater emphasis has been placed on patient-reported outcomes. However, there are only a few measures to evaluate the quality of care from the patient’s perspective. Objectives. To report the development of a scale to measure the quality of the structure and process in palliative care from the patient’s perspective and examine the reliability and validity of the scale. Methods. A cross-sectional anonymous questionnaire was administered to cancer patients who were being treated on an oncology inpatient ward, who visited an oncology outpatient clinic at Saitama Medical University International Medical Center, or who were in an inpatient palliative unit in Japan between August 2007 and March 2008. Results. A total of 405 cancer patients participated in the study. Factor analysis revealed that the Care Evaluation ScaledPatient version (CES-P) consisted of 23 items with eight subscales: physical care by physicians, physical care by nurses, psychoexistential care, help with decision making for patients, environment, cost, availability, and coordination/consistency. The total CES-P score was correlated with satisfaction (r ¼ 0.63) but not with quality of life (r ¼ 0.18). The Cronbach a coefficient of the total score was 0.97, and the intraclass correlation coefficient of the total score was 0.67. The CES-P total score was not significantly correlated with
Address correspondence to: Mitsunori Miyashita, RN, PhD, Division of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine, Ó 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Miyagi, 2-1 Seiryo-machi, Aoba-ku, Sendai 9808575, Japan. E-mail: [email protected] Accepted for publication: August 28, 2013. 0885-3924/$ - see front matter http://dx.doi.org/10.1016/j.jpainsymman.2013.08.019
2
Miyashita et al.
Vol.
-
No.
- -
2013
the self-reported Eastern Cooperative Oncology Group performance status (r ¼ 0.05). Conclusion. The CES-P has sufficient validity and reliability. In addition, this scale is independent of the general physical condition of the patient. J Pain Symptom Manage 2013;-:-e-. Ó 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Palliative care, quality of care, neoplasms, questionnaires, hospice
Introduction Donabedian1 stated that quality of care consists of three components: 1) structure of care, 2) process of care, and 3) outcome of care. Although there are many measures that evaluate outcomes of palliative care, such as quality of life,2e7 measures to evaluate the structure and process of care are scarce. Tishelman et al.8 investigated the most distressing concerns of patients with inoperable lung cancer and reported that a significant number of cancer patients are troubled by issues related to the medical care system, such as poor communication/information, lack of time with medical providers, organization of care, and anxiety related to treatment, and this distress could not be measured by standard outcome measures such as quality of life, physical symptoms, or psychological symptoms. In the United States, Teno et al.9 developed a quality of cancer care scale for patients with advanced cancer, focusing on problems with communication at the time of diagnosis and at the time of treatment decision making and issues around cancer treatments. In Japan, measurement of the structure and process of care has been included in bereaved family surveys because it is difficult to obtain this information from cancer patients at the end of life. Morita et al.10 developed the Care Evaluation Scale (CES) for palliative care patients in 2004, and this scale has been used in several nationwide Japanese surveys.11e13 The CES comprises 28 items with 10 subscales and measures the structure and process of care as experienced by bereaved family members. Although the measurement of outcomes is clearly important as a quality measure, it has a considerable limitation, that is, that outcomes can be influenced by various patient- and family-related factors, such as refractory
symptoms or patient expectations of medical professionals, which are not independent of the quality of care.14,15 Therefore, the direct evaluation of the structure and process of care might be more appropriate as a way to assess care quality because these factors are assumed to be influenced less by patient- and familyrelated factors.10 Recently, however, emphasis also has been placed on patient-reported outcomes in oncology effectiveness research. Without direct evidence reflecting the patient’s experience, stakeholders, including patients, clinicians, payers, investigators, and regulators, have incomplete information for making decisions.16 The CES has limitations as a proxy quality assessment by bereaved family members. In addition, a recent randomized controlled study showed that early palliative care was effective.17 If it is possible to directly survey patients who are receiving palliative care, responses would be more reliable and may provide important information. Therefore, in this study, we developed a scale measuring the quality of the structure and process in palliative care from the patient’s perspective by modifying the CES. We also examined the scale’s reliability and validity.
Methods Participants and Procedures We conducted a cross-sectional survey. Anonymous questionnaires were administered to cancer patients who were being treated on an oncology inpatient ward, who visited an oncology outpatient clinic at Saitama Medical University International Medical Center, or who were in an inpatient palliative units in Japan. We included a university hospital oncology ward and outpatient clinic because
Vol.
-
No.
- -
2013
Care Evaluation ScaledPatient Version
this scale was to be used by inpatients and outpatients with advanced cancer. In addition, because the patients at these two sites would be in relatively good general condition, we also included the seven inpatient palliative care units. Inclusion criteria were as follows: 1) cancer patient who was being treated on an inpatient ward or in an outpatient clinic and 2) aged 20 years or older. Exclusion criteria were as follows: 1) participant was not informed of the diagnosis of malignancy, 2) participant would have suffered serious psychological distress from the study as determined by the primary physician, 3) participant was incapable of replying to a self-reported questionnaire because of cognitive dysfunction or inability to read Japanese, and 4) refusal to participate. Using medical records, we identified cancer patients who met the criteria and consecutively recruited patients to participate in the study from August 2007 to March 2008. Trained research assistants explained the aims and methods of the survey to potential participants and administered questionnaires to participants for completion by hand after they agreed to participate. To examine testretest reliability, we sent the same questionnaire two weeks after the first survey to participants in the oncology clinic, who spontaneously agreed to participate in a second survey. The ethical and scientific validity of this study was approved by the institutional review boards of the University of Tokyo and all participating institutions. This study was conducted in accordance with the ethical guidelines for epidemiological research issued by the Ministry of Education, Culture, Sports, Science, and Technology and the Ministry of Health, Labor, and Welfare of Japan.
Measurements Care Evaluation ScaledPatient Version. We developed the Care Evaluation ScaledPatient Version (CES-P) by modifying the CES for bereaved family members.10 The original CES comprised 28 items with 10 subscales: physical care by physicians, physical care by nurses, psychoexistential care, help with decision making for patients, help with decision making for the family, environment, family burden, cost, availability, and coordination/consistency. We deleted two family-related subscales and modified the way a question was posed to the patient.
3
As a result, the CES-P comprises 23 items with eight subscales. The questions were designed so that the respondents evaluated the necessity for improvement for each item on a six-point Likert-type scale from 1, ‘‘improvement is not necessary’’ to 6, ‘‘improvement is highly necessary.’’ The subscale scores were calculated as an average of the items belonging to the subscale, and the total score was calculated as an average of the subscale scores. All scores were proportionally adjusted to range from 0 to 100 to make interpretation easy; higher scores indicated lower perception of necessity for improvement. We designed this scale to be used not only in inpatient and outpatient settings but also in the home. The questionnaire that was finally adopted is described in the Appendix. Overall Care Satisfaction. We asked participants about their overall satisfaction with their care to examine concurrent validity. The question was, ‘‘Overall, were you satisfied with the medical care you received?’’ Participants answered on a six-point Likert scale from 1, ‘‘absolutely dissatisfied’’ to 6, ‘‘absolutely satisfied.’’ Overall Quality of Life. We asked participants to respond to the overall quality of life item in the widely used European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 15-Palliative (EORTCQLQ-C15-PAL).18 The question was, ‘‘How would you rate your overall quality of life during the past week?’’ Participants answered using a seven-point numerical scale from 1, ‘‘very poor’’ to 7, ‘‘excellent.’’ Participant Characteristics. We collected information on patient age, gender, primary cancer site, duration of disease, existence of metastasis, marital status, working status, treatment status, and self-reported Eastern Cooperative Oncology Group (ECOG) performance status, using medical records and questionnaires.
Statistical Analysis We conducted explanatory factor analysis using the principal axis method with a promax rotation. To examine the concurrent and discriminant validity, we calculated Pearson correlation coefficients between total score, each subscale score, and overall satisfaction and overall quality of life. For internal consistency and test-
4
Miyashita et al.
retest reliability, we calculated Cronbach a coefficients and intraclass correlation coefficients (ICCs). Finally, we displayed correlation of the total CES-P score and self-reported ECOG performance status using Spearman correlation coefficient to examine whether CES-P depends on the patient’s general physical condition. All analyses were performed using SAS v. 9.1 (SAS Institute Inc., Cary, NC).
Results Participant Characteristics A total of 405 cancer patients participated in the study. Participant characteristics are shown in Table 1. Mean age SD was 61 12 years, and 48% of participants were male. Primary tumor sites were colon/rectum 24%, breast 22%, and stomach 12%. The mean duration of disease was 2.3 2.9 years. Seventy-seven percent of the participants had metastases, and 57% were undergoing chemotherapy. Thirteen percent of the ECOG performance status scores were 3 or 4, although 70% of the scores were 0 or 1. In the second survey to investigate reliability, 111 of 257 outpatient oncology clinic patients agreed to take the survey, with a response rate of 43%.
Factor Validity The results of the factor analysis are shown in Table 2. Although eight subscales were assumed, seven factors were identified. We classified the assumed eight subscales as physical care by physicians, physical care by nurses, help with decision making, environment, family burden, cost, availability, and coordination/ consistency. Psychoexistential care was considered as simultaneously belonging to the subscales of physical care by nurse and help with decision making by physician. The cumulative proportion was 88.1%.
Vol.
-
No.
- -
2013
Table 1 Participant Characteristics (N ¼ 405) Characteristic Age, years (mean SD) Gender Male Female Primary site Colon/rectum Breast Stomach Pancreas Esophagus Lung Head and neck Ovary Liver Uterus Other Duration of disease, years (mean SD) Metastasis Present Absent Treatment site Oncology outpatient clinic Oncology inpatient ward Palliative care unit Marital status Single Married Divorced Widowed Working status Employed On leave of absence Unemployed Type of treatment Chemotherapy Radiation Only symptomatically ECOG performance status 0 1 2 3 4
%
n 61 12 195 205
48 51
96 91 47 20 25 21 12 8 7 7 38
24 22 12 5 6 5 3 2 2 2 9
2.3 2.9
312 59
77 15
257 72 76
63 18 19
20 313 24 38
5 77 6 9
100 59 234
25 15 58
232 13 160
57 3 40
101 183 51 32 20
25 45 13 8 5
ECOG ¼ Eastern Cooperative Oncology Group. The total percentage does not equal 100% because of missing values.
a similar tendency with the total score; the correlations with satisfaction were from 0.37 to 0.63 and with quality of life from 0.08 to 0.18.
Concurrent and Discriminant Validity Table 3 shows the concurrent and discriminant validity demonstrated by Pearson correlation coefficients between total score, each subscale score of the CES-P, overall satisfaction, and overall quality of life. The total CES-P score was correlated with satisfaction (r ¼ 0.63) but was not correlated with quality of life (P ¼ 0.18). The subscales demonstrated
Internal Consistency and Reliability Table 4 demonstrates internal consistency (Cronbach a) and test-retest reliability (ICC). Cronbach a ranged from 0.85 to 0.97. The Cronbach a coefficient of the total score was 0.97. The ICC ranged from 0.56 to 0.70 except for ‘‘availability’’ (ICC ¼ 0.48). The ICC of the total score was 0.67.
Vol. -
Table 2 Factor Validity of the Care Evaluation ScaledPatient Version Factor 3
Factor 4
Factor 5
Factor 6
Factor 7
Communality
0.30 0.44 0.40
0.14 0.03 0.14
0.03 0.07 0.01
0.01 0.03 0.02
0.05 0.02 0.00
0.08 0.02 0.02
0.54 0.61 0.55
0.82 0.84 0.82
0.91 0.96
0.04 0.04
0.02 0.02
0.07 0.03
0.01 0.01
0.04 0.01
0.03 0.00
0.89 0.91
0.99
0.06
0.10
0.07
0.05
0.08
0.01
0.91
0.53
0.44
0.02
0.01
0.05
0.05
0.01
0.86
0.50
0.39
0.06
0.08
0.03
0.18
0.09
0.87
0.50
0.46
0.05
0.05
0.01
0.04
0.03
0.87
0.15
0.65
0.00
0.13
0.02
0.07
0.05
0.85
0.06
1.02
0.13
0.02
0.03
0.10
0.05
0.88
0.17
0.69
0.08
0.15
0.05
0.04
0.10
0.88
0.08 0.10 0.05
0.19 0.10 0.08
0.06 0.04 0.02
0.74 0.75 0.83
0.02 0.15 0.07
0.07 0.02 0.13
0.05 0.18 0.12
0.85 0.81 0.86
0.08 0.06
0.02 0.02
0.02 0.05
0.25 0.08
0.78 0.97
0.06 0.05
0.06 0.01
0.85 0.91
0.04 0.05 0.05
0.04 0.04 0.02
0.97 0.59 0.63
0.04 0.28 0.15
0.00 0.00 0.04
0.14 0.21 0.26
0.10 0.02 0.08
0.88 0.79 0.89
0.07
0.19
0.35
0.15
0.11
0.54
0.07
0.81
0.03 0.07
0.03 0.04
0.03 0.05
0.06 0.12
0.03 0.01
0.91 0.72
0.02 0.12
0.89 0.87
Care Evaluation ScaledPatient Version 5
Cumulative proportion, 88.1%.
Factor 2
2013
I. Physical care by physician (75 26) 1. Doctors try to relieve your physical discomfort. 2. Doctors deal promptly with your uncomfortable symptoms. 3. Doctors have adequate knowledge and skills. II. Physical care by nurse (75 25) 4. Nurses respond promptly to your needs. 5. Nurses have adequate knowledge and skills. 6. Nurses help you to enjoy daily life. III. Psychoexistential care (75 25) 7. Doctors and nurses pay attention to relieving your concerns and worries. 8. Doctors and nurses take appropriate measures when you become depressed. 9. Doctors and nurses try to give you hope during your care. IV. Help with decision making by physician (74 24) 10. The doctors give sufficient explanations to you about your condition and the details of your medical treatment. 11. The doctors give sufficient explanations to you about the expected outcome. 12. Consideration is given so that you can participate in the selection of treatment. V. Environment (73 25) 13. Hospital or room is convenient and comfortable. 14. Sound proofing measures for privacy are adequate. 15. Toilet and washstand facilities are adequate. VI. Cost (67 26) 16. The contents of the bills are easy to understand. 17. The total cost is reasonable. VII. Availability (69 25) 18. Admission (use) is possible when necessary, without waiting. 19. The procedures of admission (use) are simple. 20. Admission (use) is in accordance with the wishes of you and your family. VIII. Coordination and consistency (74 24) 21. There is good cooperation among staff members, such as doctors and nurses. 22. The same doctors and nurses provide your care. 23. Treatment is planned with appropriate consideration of the previous course of the disease. Total score (73 21)
Factor 1
- -
Subscales and Items (Mean SD)
No.
Standardized Regression Coefficient
6
Miyashita et al.
Table 3 Concurrent and Discriminant Validity Subscales I. Physical care by physician II. Physical care by nurse III. Psychoexistential care IV. Help with decision making by physician V. Environment VI. Cost VII. Availability VIII. Coordination and consistency Total score
Vol.
-
No.
- -
2013
Table 4 Internal Consistency and Reliability
Quality Satisfaction of Lifea 0.63 0.55 0.59 0.62
0.16 0.17 0.19 0.19
0.49 0.37 0.43 0.52 0.63
0.13 0.09 0.08 0.16 0.18
Figures are Pearson correlation coefficients. a Global health status/quality of life measured using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 15-Palliative.
Correlation With Self-Reported ECOG Performance Status Fig. 1 shows that the CES-P total score was not correlated with self-reported ECOG performance status (Spearman r ¼ 0.05).
Discussion We validated the CES-P and demonstrated that it has sufficient validity and reliability. In addition, this scale is independent of the patient’s general physical condition. The ability to assess quality of care independent of the patient’s general physical function is a preferred characteristic for measures of quality of care. This is because, in general, patient physical status becomes worse as a disease advances. Therefore, a measure that is correlated with physical condition would decrease along with disease trajectory. Consequently, even if the quality of care was kept at a certain level, the measure of the quality of care might decrease
Subscales I. Physical care by physician II. Physical care by nurse III. Psychoexistential care IV. Help with decision making by physician V. Environment VI. Cost VII. Availability VIII. Coordination and consistency Total score
a
ICC
0.95 0.97 0.96 0.92
0.70 0.64 0.62 0.58
0.89 0.85 0.88 0.91 0.97
0.66 0.58 0.48 0.56 0.67
a ¼ Cronbach a coefficient; ICC ¼ intraclass correlation coefficient.
in accordance with the patient’s physical condition and would not reflect the actual level of the quality of care. Using the CES-P, we were able to measure the quality of care independent of physical condition. In explanatory factor analysis, the psychoexistential care subscale belonged to both ‘‘physical care by nurse’’ and ‘‘help with decision making by physician.’’ In addition, it was correlated with ‘‘physical care by physician’’ to some extent. These are reasonable and interpretable results. We asked patients to evaluate ‘‘doctors’ and nurses’ psychoexistential care.’’ The participants evaluated physician and nursing care separately, and we were not able to separate physical care and psychoexistential care completely. However, this subscale is important because it represented care received from both physicians and nurses. Therefore, we considered it appropriate to use the CES-P with eight subscales. The CES-P had satisfactory concurrent validity. We asked participants whether they were satisfied with their medical care. The CES-P measures the need for improvement in the structure and process of care, which is
Fig. 1. Correlation with self-reported ECOG performance status. ECOG ¼ Eastern Cooperative Oncology Group.
Vol.
-
No.
- -
2013
Care Evaluation ScaledPatient Version
different from satisfaction. Aspinal et al.19 concluded that using satisfaction as a method of assessing the quality of palliative care is particularly problematic and requires further investigation in both practical and conceptual terms. However, because both the CES-P and the measurement of satisfaction focus on quality of care, a moderate correlation between them would be reasonable. In contrast, the CES-P was not correlated with overall quality of life. This shows that the evaluation of quality of care and quality of life is different. To assess the structure, process, and outcomes of palliative care, it would be reasonable to use both quality of care and quality of life measures. There are only a few instruments to measure the structure and process of care for patients with advanced cancer. In the United States, Teno et al.9 developed a quality of cancer care scale for advanced cancer patients, focusing on problems with communication at the time of diagnosis and at the time of treatment decision making and issues around cancer treatments. The CES-P covers a broader range of the structure and process of care, unlike the instrument developed by Teno et al. We explored patient factors related to the CES-P; however, no patient characteristics showed a clinically significant correlation. The independence of the patient characteristics collected in this survey from the CES-P scores illustrates the desirable nature of this scale because it was not necessary to adjust for background factors when comparing different groups (such as intervention studies). This study had several limitations. First, we used a convenience sample that might not have been representative of the general population. However, we recruited as many consecutive participants as possible. Some inpatients were not able to complete the entire questionnaire because of frailty or physical or cognitive deficits, and some outpatients did not have time to complete the questionnaire. Therefore, we could not recruit strictly according to the hospital or clinic patient lists. But this validation study focused on correlations among scales and items rather than the representativeness of the sample and distribution of the scale. Therefore, this was not a fatal defect. Second, this study did not examine criterion validity because there is no gold standard to measure quality of care in palliative care settings in Japan.
7
Conclusions We developed the CES-P to measure the quality of the structure and process of care from the patient’s perspective. The CES-P comprises 23 items with eight subscales: physical care by physicians, physical care by nurses, psychoexistential care, help with decision making for patients, environment, cost, availability, and coordination/consistency. The CES-P has sufficient validity and reliability. In addition, this scale is independent of the patient’s general physical condition.
Disclosures and Acknowledgments The authors express special thanks to Chizuko Takigawa, Takuya Shinjo, Akihiko Suga, Satoshi Inoue, Masayuki Ikenaga, and Hiroyuki Kohara for data collection. They also extend thanks to Hiroko Sagawa, Fumiko Takashita, and Ai Ishitoya for managing the study. This research was supported by a Third Term Comprehensive Control Research for Cancer Health and Labor Sciences Research Grant of the Ministry of Health, Labor and Welfare of Japan. The authors declare no conflicts of interest.
References 1. Donabedian A. The quality of care. How can it be assessed? JAMA 1988;260:1743e1748. 2. Cella DF, Tulsky DS, Gray G, et al. The Functional Assessment of Cancer Therapy scale: development and validation of the general measure. J Clin Oncol 1993;11:570e579. 3. Aaronson NK, Ahmedzai S, Bergman B, et al. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst 1993;85:365e376. 4. Teno JM, Clarridge B, Casey V, EdgmanLevitan S, Fowler J. Validation of toolkit afterdeath bereaved family member interview. J Pain Symptom Manage 2001;22:752e758. 5. Morita T, Chihara S, Kashiwagi T, Quality Audit Committee of the Japanese Association of Hospice and Palliative Care Unit. A scale to measure satisfaction of bereaved family receiving inpatient palliative care. Palliat Med 2002;16:141e150. 6. Steinhauser KE, Clipp EC, Bosworth HB, et al. Measuring quality of life at the end of life: validation of the QUAL-E. Palliat Support Care 2004;2:3e14.
8
Miyashita et al.
Vol.
-
No.
- -
2013
7. 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;35:486e498.
13. Morita T, Miyashita M, Yamagishi A, et al. A region-based palliative care intervention trial using the mixed-method approach: Japan OPTIM study. BMC Palliat Care 2012;11:2.
8. Tishelman C, Lovgren M, Broberger E, Hamberg K, Sprangers MAG. Are the most distressing concerns of patients with inoperable lung cancer adequately assessed? A mixed-methods analysis. J Clin Oncol 2010;28:1942e1949.
14. Emanuel EJ, Emanuel LL. The promise of a good death. Lancet 1998;351(Suppl 2):SII21eSII29.
9. Teno JM, Lima JC, Lyons KD. Cancer patient assessment and reports of excellence: reliability and validity of advanced cancer patient perceptions of the quality of care. J Clin Oncol 2009;27:1621e1626. 10. 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;27:492e501. 11. Miyashita M, Morita T, Tsuneto S, et al. The Japan HOspice and Palliative Care Evaluation study (J-HOPE study): study design and characteristics of participating institutions. Am J Hosp Palliat Med 2008;25:223e232. 12. Miyashita M, Morita T, Hirai K. Evaluation of end-of-life cancer care from the perspective of bereaved family members: the Japanese experience. J Clin Oncol 2008;26:3845e3852.
15. Stewart AL, Teno J, Patrick DL, Lynn J. The concept of quality of life of dying persons in the context of health care. J Pain Symptom Manage 1999;17:93e108. 16. Basch E, Abernethy AP, Mullins CD, et al. Recommendations for incorporating patient-reported outcomes into clinical comparative effectiveness research in adult oncology. J Clin Oncol 2012;30: 4249e4255. 17. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010;363:733e742. 18. Groenvold M, Petersen MA, Aaronson NK, et al. The development of the EORTC QLQ-C15-PAL: a shortened questionnaire for cancer patients in palliative care. Eur J Cancer 2006;42:55e64. 19. Aspinal F, Addington-Hall J, Hughes R, Higginson IJ. Using satisfaction to measure the quality of palliative care: a review of the literature. J Adv Nurs 2003;42:324e339.
Appendix Care Evaluation ScaledPatient Version (CES-P) I. Physical care by physician 1. Doctors try to relieve your physical discomfort. 2. Doctors deal promptly with your uncomfortable symptoms. 3. Doctors have adequate knowledge and skills. II. Physical care by nurse 4. Nurses respond promptly to your needs. 5. Nurses have adequate knowledge and skills. 6. Nurses help you to enjoy daily life. III. Psychoexistential care 7. Doctors and nurses pay attention to relieving your concerns and worries. 8. Doctors and nurses take appropriate measures when you become depressed. 9. Doctors and nurses try so that your hope would be accomplished. IV. Help with decision making by physician 10. The doctors give sufficient explanations to you about your present condition and the details of your medical treatment. 11. The doctors give sufficient explanations to you about the expected outcome. 12. Consideration is given so that you can participate in the selection of treatment. V. Environment 13. Hospital or room is convenient and comfortable. 14. Sound proofing measures for privacy are adequate. 15. Toilet and washstand facilities are adequate. VI. Cost 16. The contents of the bills are easy to understand. 17. The total cost is reasonable. VII. Availability 18. Admission (use) is possible when necessary without waiting.
Vol.
-
No.
- -
2013
Care Evaluation ScaledPatient Version
19. The procedures of admission (use) are simple. 20. Admission (use) is in accordance with the wishes of you and your family. VIII.Coordination and consistency 21. There is good cooperation among staff members, such as doctors and nurses. 22. The same doctors and nurses provide your care. 23. Treatment is planned with appropriate consideration of the previous course of the disease.
9
-
No.
- -
2013
Journal of Pain and Symptom Management 1
Brief Methodological Report
Care Evaluation ScaledPatient Version: Measuring the Quality of the Structure and Process of Palliative Care From the Patient’s Perspective Mitsunori Miyashita, RN, PhD, Makoto Wada, MD, Tatsuya Morita, MD, Mayumi Ishida, PhD, Hideki Onishi, MD, PhD, Satoru Tsuneto, MD, PhD, and Yasuo Shima, MD, PhD Division of Palliative Nursing (M.M.), Health Sciences, Tohoku University Graduate School of Medicine, Sendai; Department of Adult Nursing/Palliative Care Nursing (M.M.), School of Health Sciences and Nursing Sciences, Graduate School of Medicine, The University of Tokyo; Department of Psycho-Oncology and Palliative Medicine (M.W.), Osaka Medical Center for Cancer and Cardiovascular Diseases, Osaka; Department of Palliative and Supportive Care, Palliative Care Team and Seirei Hospice (T.M.), Seirei Mikatahara Hospital, Shizuoka; Department of Psycho-Oncology (M.I., H.O.), Saitama Cancer Center, Saitama; Department of Palliative Medicine (S.T.), Osaka University Graduate School of Medicine, Osaka; and Department of Palliative Medicine (Y.S.), Tsukuba Medical Center Hospital, Ibaraki, Japan
Abstract Context. Recently, greater emphasis has been placed on patient-reported outcomes. However, there are only a few measures to evaluate the quality of care from the patient’s perspective. Objectives. To report the development of a scale to measure the quality of the structure and process in palliative care from the patient’s perspective and examine the reliability and validity of the scale. Methods. A cross-sectional anonymous questionnaire was administered to cancer patients who were being treated on an oncology inpatient ward, who visited an oncology outpatient clinic at Saitama Medical University International Medical Center, or who were in an inpatient palliative unit in Japan between August 2007 and March 2008. Results. A total of 405 cancer patients participated in the study. Factor analysis revealed that the Care Evaluation ScaledPatient version (CES-P) consisted of 23 items with eight subscales: physical care by physicians, physical care by nurses, psychoexistential care, help with decision making for patients, environment, cost, availability, and coordination/consistency. The total CES-P score was correlated with satisfaction (r ¼ 0.63) but not with quality of life (r ¼ 0.18). The Cronbach a coefficient of the total score was 0.97, and the intraclass correlation coefficient of the total score was 0.67. The CES-P total score was not significantly correlated with
Address correspondence to: Mitsunori Miyashita, RN, PhD, Division of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine, Ó 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Miyagi, 2-1 Seiryo-machi, Aoba-ku, Sendai 9808575, Japan. E-mail: [email protected] Accepted for publication: August 28, 2013. 0885-3924/$ - see front matter http://dx.doi.org/10.1016/j.jpainsymman.2013.08.019
2
Miyashita et al.
Vol.
-
No.
- -
2013
the self-reported Eastern Cooperative Oncology Group performance status (r ¼ 0.05). Conclusion. The CES-P has sufficient validity and reliability. In addition, this scale is independent of the general physical condition of the patient. J Pain Symptom Manage 2013;-:-e-. Ó 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Palliative care, quality of care, neoplasms, questionnaires, hospice
Introduction Donabedian1 stated that quality of care consists of three components: 1) structure of care, 2) process of care, and 3) outcome of care. Although there are many measures that evaluate outcomes of palliative care, such as quality of life,2e7 measures to evaluate the structure and process of care are scarce. Tishelman et al.8 investigated the most distressing concerns of patients with inoperable lung cancer and reported that a significant number of cancer patients are troubled by issues related to the medical care system, such as poor communication/information, lack of time with medical providers, organization of care, and anxiety related to treatment, and this distress could not be measured by standard outcome measures such as quality of life, physical symptoms, or psychological symptoms. In the United States, Teno et al.9 developed a quality of cancer care scale for patients with advanced cancer, focusing on problems with communication at the time of diagnosis and at the time of treatment decision making and issues around cancer treatments. In Japan, measurement of the structure and process of care has been included in bereaved family surveys because it is difficult to obtain this information from cancer patients at the end of life. Morita et al.10 developed the Care Evaluation Scale (CES) for palliative care patients in 2004, and this scale has been used in several nationwide Japanese surveys.11e13 The CES comprises 28 items with 10 subscales and measures the structure and process of care as experienced by bereaved family members. Although the measurement of outcomes is clearly important as a quality measure, it has a considerable limitation, that is, that outcomes can be influenced by various patient- and family-related factors, such as refractory
symptoms or patient expectations of medical professionals, which are not independent of the quality of care.14,15 Therefore, the direct evaluation of the structure and process of care might be more appropriate as a way to assess care quality because these factors are assumed to be influenced less by patient- and familyrelated factors.10 Recently, however, emphasis also has been placed on patient-reported outcomes in oncology effectiveness research. Without direct evidence reflecting the patient’s experience, stakeholders, including patients, clinicians, payers, investigators, and regulators, have incomplete information for making decisions.16 The CES has limitations as a proxy quality assessment by bereaved family members. In addition, a recent randomized controlled study showed that early palliative care was effective.17 If it is possible to directly survey patients who are receiving palliative care, responses would be more reliable and may provide important information. Therefore, in this study, we developed a scale measuring the quality of the structure and process in palliative care from the patient’s perspective by modifying the CES. We also examined the scale’s reliability and validity.
Methods Participants and Procedures We conducted a cross-sectional survey. Anonymous questionnaires were administered to cancer patients who were being treated on an oncology inpatient ward, who visited an oncology outpatient clinic at Saitama Medical University International Medical Center, or who were in an inpatient palliative units in Japan. We included a university hospital oncology ward and outpatient clinic because
Vol.
-
No.
- -
2013
Care Evaluation ScaledPatient Version
this scale was to be used by inpatients and outpatients with advanced cancer. In addition, because the patients at these two sites would be in relatively good general condition, we also included the seven inpatient palliative care units. Inclusion criteria were as follows: 1) cancer patient who was being treated on an inpatient ward or in an outpatient clinic and 2) aged 20 years or older. Exclusion criteria were as follows: 1) participant was not informed of the diagnosis of malignancy, 2) participant would have suffered serious psychological distress from the study as determined by the primary physician, 3) participant was incapable of replying to a self-reported questionnaire because of cognitive dysfunction or inability to read Japanese, and 4) refusal to participate. Using medical records, we identified cancer patients who met the criteria and consecutively recruited patients to participate in the study from August 2007 to March 2008. Trained research assistants explained the aims and methods of the survey to potential participants and administered questionnaires to participants for completion by hand after they agreed to participate. To examine testretest reliability, we sent the same questionnaire two weeks after the first survey to participants in the oncology clinic, who spontaneously agreed to participate in a second survey. The ethical and scientific validity of this study was approved by the institutional review boards of the University of Tokyo and all participating institutions. This study was conducted in accordance with the ethical guidelines for epidemiological research issued by the Ministry of Education, Culture, Sports, Science, and Technology and the Ministry of Health, Labor, and Welfare of Japan.
Measurements Care Evaluation ScaledPatient Version. We developed the Care Evaluation ScaledPatient Version (CES-P) by modifying the CES for bereaved family members.10 The original CES comprised 28 items with 10 subscales: physical care by physicians, physical care by nurses, psychoexistential care, help with decision making for patients, help with decision making for the family, environment, family burden, cost, availability, and coordination/consistency. We deleted two family-related subscales and modified the way a question was posed to the patient.
3
As a result, the CES-P comprises 23 items with eight subscales. The questions were designed so that the respondents evaluated the necessity for improvement for each item on a six-point Likert-type scale from 1, ‘‘improvement is not necessary’’ to 6, ‘‘improvement is highly necessary.’’ The subscale scores were calculated as an average of the items belonging to the subscale, and the total score was calculated as an average of the subscale scores. All scores were proportionally adjusted to range from 0 to 100 to make interpretation easy; higher scores indicated lower perception of necessity for improvement. We designed this scale to be used not only in inpatient and outpatient settings but also in the home. The questionnaire that was finally adopted is described in the Appendix. Overall Care Satisfaction. We asked participants about their overall satisfaction with their care to examine concurrent validity. The question was, ‘‘Overall, were you satisfied with the medical care you received?’’ Participants answered on a six-point Likert scale from 1, ‘‘absolutely dissatisfied’’ to 6, ‘‘absolutely satisfied.’’ Overall Quality of Life. We asked participants to respond to the overall quality of life item in the widely used European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 15-Palliative (EORTCQLQ-C15-PAL).18 The question was, ‘‘How would you rate your overall quality of life during the past week?’’ Participants answered using a seven-point numerical scale from 1, ‘‘very poor’’ to 7, ‘‘excellent.’’ Participant Characteristics. We collected information on patient age, gender, primary cancer site, duration of disease, existence of metastasis, marital status, working status, treatment status, and self-reported Eastern Cooperative Oncology Group (ECOG) performance status, using medical records and questionnaires.
Statistical Analysis We conducted explanatory factor analysis using the principal axis method with a promax rotation. To examine the concurrent and discriminant validity, we calculated Pearson correlation coefficients between total score, each subscale score, and overall satisfaction and overall quality of life. For internal consistency and test-
4
Miyashita et al.
retest reliability, we calculated Cronbach a coefficients and intraclass correlation coefficients (ICCs). Finally, we displayed correlation of the total CES-P score and self-reported ECOG performance status using Spearman correlation coefficient to examine whether CES-P depends on the patient’s general physical condition. All analyses were performed using SAS v. 9.1 (SAS Institute Inc., Cary, NC).
Results Participant Characteristics A total of 405 cancer patients participated in the study. Participant characteristics are shown in Table 1. Mean age SD was 61 12 years, and 48% of participants were male. Primary tumor sites were colon/rectum 24%, breast 22%, and stomach 12%. The mean duration of disease was 2.3 2.9 years. Seventy-seven percent of the participants had metastases, and 57% were undergoing chemotherapy. Thirteen percent of the ECOG performance status scores were 3 or 4, although 70% of the scores were 0 or 1. In the second survey to investigate reliability, 111 of 257 outpatient oncology clinic patients agreed to take the survey, with a response rate of 43%.
Factor Validity The results of the factor analysis are shown in Table 2. Although eight subscales were assumed, seven factors were identified. We classified the assumed eight subscales as physical care by physicians, physical care by nurses, help with decision making, environment, family burden, cost, availability, and coordination/ consistency. Psychoexistential care was considered as simultaneously belonging to the subscales of physical care by nurse and help with decision making by physician. The cumulative proportion was 88.1%.
Vol.
-
No.
- -
2013
Table 1 Participant Characteristics (N ¼ 405) Characteristic Age, years (mean SD) Gender Male Female Primary site Colon/rectum Breast Stomach Pancreas Esophagus Lung Head and neck Ovary Liver Uterus Other Duration of disease, years (mean SD) Metastasis Present Absent Treatment site Oncology outpatient clinic Oncology inpatient ward Palliative care unit Marital status Single Married Divorced Widowed Working status Employed On leave of absence Unemployed Type of treatment Chemotherapy Radiation Only symptomatically ECOG performance status 0 1 2 3 4
%
n 61 12 195 205
48 51
96 91 47 20 25 21 12 8 7 7 38
24 22 12 5 6 5 3 2 2 2 9
2.3 2.9
312 59
77 15
257 72 76
63 18 19
20 313 24 38
5 77 6 9
100 59 234
25 15 58
232 13 160
57 3 40
101 183 51 32 20
25 45 13 8 5
ECOG ¼ Eastern Cooperative Oncology Group. The total percentage does not equal 100% because of missing values.
a similar tendency with the total score; the correlations with satisfaction were from 0.37 to 0.63 and with quality of life from 0.08 to 0.18.
Concurrent and Discriminant Validity Table 3 shows the concurrent and discriminant validity demonstrated by Pearson correlation coefficients between total score, each subscale score of the CES-P, overall satisfaction, and overall quality of life. The total CES-P score was correlated with satisfaction (r ¼ 0.63) but was not correlated with quality of life (P ¼ 0.18). The subscales demonstrated
Internal Consistency and Reliability Table 4 demonstrates internal consistency (Cronbach a) and test-retest reliability (ICC). Cronbach a ranged from 0.85 to 0.97. The Cronbach a coefficient of the total score was 0.97. The ICC ranged from 0.56 to 0.70 except for ‘‘availability’’ (ICC ¼ 0.48). The ICC of the total score was 0.67.
Vol. -
Table 2 Factor Validity of the Care Evaluation ScaledPatient Version Factor 3
Factor 4
Factor 5
Factor 6
Factor 7
Communality
0.30 0.44 0.40
0.14 0.03 0.14
0.03 0.07 0.01
0.01 0.03 0.02
0.05 0.02 0.00
0.08 0.02 0.02
0.54 0.61 0.55
0.82 0.84 0.82
0.91 0.96
0.04 0.04
0.02 0.02
0.07 0.03
0.01 0.01
0.04 0.01
0.03 0.00
0.89 0.91
0.99
0.06
0.10
0.07
0.05
0.08
0.01
0.91
0.53
0.44
0.02
0.01
0.05
0.05
0.01
0.86
0.50
0.39
0.06
0.08
0.03
0.18
0.09
0.87
0.50
0.46
0.05
0.05
0.01
0.04
0.03
0.87
0.15
0.65
0.00
0.13
0.02
0.07
0.05
0.85
0.06
1.02
0.13
0.02
0.03
0.10
0.05
0.88
0.17
0.69
0.08
0.15
0.05
0.04
0.10
0.88
0.08 0.10 0.05
0.19 0.10 0.08
0.06 0.04 0.02
0.74 0.75 0.83
0.02 0.15 0.07
0.07 0.02 0.13
0.05 0.18 0.12
0.85 0.81 0.86
0.08 0.06
0.02 0.02
0.02 0.05
0.25 0.08
0.78 0.97
0.06 0.05
0.06 0.01
0.85 0.91
0.04 0.05 0.05
0.04 0.04 0.02
0.97 0.59 0.63
0.04 0.28 0.15
0.00 0.00 0.04
0.14 0.21 0.26
0.10 0.02 0.08
0.88 0.79 0.89
0.07
0.19
0.35
0.15
0.11
0.54
0.07
0.81
0.03 0.07
0.03 0.04
0.03 0.05
0.06 0.12
0.03 0.01
0.91 0.72
0.02 0.12
0.89 0.87
Care Evaluation ScaledPatient Version 5
Cumulative proportion, 88.1%.
Factor 2
2013
I. Physical care by physician (75 26) 1. Doctors try to relieve your physical discomfort. 2. Doctors deal promptly with your uncomfortable symptoms. 3. Doctors have adequate knowledge and skills. II. Physical care by nurse (75 25) 4. Nurses respond promptly to your needs. 5. Nurses have adequate knowledge and skills. 6. Nurses help you to enjoy daily life. III. Psychoexistential care (75 25) 7. Doctors and nurses pay attention to relieving your concerns and worries. 8. Doctors and nurses take appropriate measures when you become depressed. 9. Doctors and nurses try to give you hope during your care. IV. Help with decision making by physician (74 24) 10. The doctors give sufficient explanations to you about your condition and the details of your medical treatment. 11. The doctors give sufficient explanations to you about the expected outcome. 12. Consideration is given so that you can participate in the selection of treatment. V. Environment (73 25) 13. Hospital or room is convenient and comfortable. 14. Sound proofing measures for privacy are adequate. 15. Toilet and washstand facilities are adequate. VI. Cost (67 26) 16. The contents of the bills are easy to understand. 17. The total cost is reasonable. VII. Availability (69 25) 18. Admission (use) is possible when necessary, without waiting. 19. The procedures of admission (use) are simple. 20. Admission (use) is in accordance with the wishes of you and your family. VIII. Coordination and consistency (74 24) 21. There is good cooperation among staff members, such as doctors and nurses. 22. The same doctors and nurses provide your care. 23. Treatment is planned with appropriate consideration of the previous course of the disease. Total score (73 21)
Factor 1
- -
Subscales and Items (Mean SD)
No.
Standardized Regression Coefficient
6
Miyashita et al.
Table 3 Concurrent and Discriminant Validity Subscales I. Physical care by physician II. Physical care by nurse III. Psychoexistential care IV. Help with decision making by physician V. Environment VI. Cost VII. Availability VIII. Coordination and consistency Total score
Vol.
-
No.
- -
2013
Table 4 Internal Consistency and Reliability
Quality Satisfaction of Lifea 0.63 0.55 0.59 0.62
0.16 0.17 0.19 0.19
0.49 0.37 0.43 0.52 0.63
0.13 0.09 0.08 0.16 0.18
Figures are Pearson correlation coefficients. a Global health status/quality of life measured using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 15-Palliative.
Correlation With Self-Reported ECOG Performance Status Fig. 1 shows that the CES-P total score was not correlated with self-reported ECOG performance status (Spearman r ¼ 0.05).
Discussion We validated the CES-P and demonstrated that it has sufficient validity and reliability. In addition, this scale is independent of the patient’s general physical condition. The ability to assess quality of care independent of the patient’s general physical function is a preferred characteristic for measures of quality of care. This is because, in general, patient physical status becomes worse as a disease advances. Therefore, a measure that is correlated with physical condition would decrease along with disease trajectory. Consequently, even if the quality of care was kept at a certain level, the measure of the quality of care might decrease
Subscales I. Physical care by physician II. Physical care by nurse III. Psychoexistential care IV. Help with decision making by physician V. Environment VI. Cost VII. Availability VIII. Coordination and consistency Total score
a
ICC
0.95 0.97 0.96 0.92
0.70 0.64 0.62 0.58
0.89 0.85 0.88 0.91 0.97
0.66 0.58 0.48 0.56 0.67
a ¼ Cronbach a coefficient; ICC ¼ intraclass correlation coefficient.
in accordance with the patient’s physical condition and would not reflect the actual level of the quality of care. Using the CES-P, we were able to measure the quality of care independent of physical condition. In explanatory factor analysis, the psychoexistential care subscale belonged to both ‘‘physical care by nurse’’ and ‘‘help with decision making by physician.’’ In addition, it was correlated with ‘‘physical care by physician’’ to some extent. These are reasonable and interpretable results. We asked patients to evaluate ‘‘doctors’ and nurses’ psychoexistential care.’’ The participants evaluated physician and nursing care separately, and we were not able to separate physical care and psychoexistential care completely. However, this subscale is important because it represented care received from both physicians and nurses. Therefore, we considered it appropriate to use the CES-P with eight subscales. The CES-P had satisfactory concurrent validity. We asked participants whether they were satisfied with their medical care. The CES-P measures the need for improvement in the structure and process of care, which is
Fig. 1. Correlation with self-reported ECOG performance status. ECOG ¼ Eastern Cooperative Oncology Group.
Vol.
-
No.
- -
2013
Care Evaluation ScaledPatient Version
different from satisfaction. Aspinal et al.19 concluded that using satisfaction as a method of assessing the quality of palliative care is particularly problematic and requires further investigation in both practical and conceptual terms. However, because both the CES-P and the measurement of satisfaction focus on quality of care, a moderate correlation between them would be reasonable. In contrast, the CES-P was not correlated with overall quality of life. This shows that the evaluation of quality of care and quality of life is different. To assess the structure, process, and outcomes of palliative care, it would be reasonable to use both quality of care and quality of life measures. There are only a few instruments to measure the structure and process of care for patients with advanced cancer. In the United States, Teno et al.9 developed a quality of cancer care scale for advanced cancer patients, focusing on problems with communication at the time of diagnosis and at the time of treatment decision making and issues around cancer treatments. The CES-P covers a broader range of the structure and process of care, unlike the instrument developed by Teno et al. We explored patient factors related to the CES-P; however, no patient characteristics showed a clinically significant correlation. The independence of the patient characteristics collected in this survey from the CES-P scores illustrates the desirable nature of this scale because it was not necessary to adjust for background factors when comparing different groups (such as intervention studies). This study had several limitations. First, we used a convenience sample that might not have been representative of the general population. However, we recruited as many consecutive participants as possible. Some inpatients were not able to complete the entire questionnaire because of frailty or physical or cognitive deficits, and some outpatients did not have time to complete the questionnaire. Therefore, we could not recruit strictly according to the hospital or clinic patient lists. But this validation study focused on correlations among scales and items rather than the representativeness of the sample and distribution of the scale. Therefore, this was not a fatal defect. Second, this study did not examine criterion validity because there is no gold standard to measure quality of care in palliative care settings in Japan.
7
Conclusions We developed the CES-P to measure the quality of the structure and process of care from the patient’s perspective. The CES-P comprises 23 items with eight subscales: physical care by physicians, physical care by nurses, psychoexistential care, help with decision making for patients, environment, cost, availability, and coordination/consistency. The CES-P has sufficient validity and reliability. In addition, this scale is independent of the patient’s general physical condition.
Disclosures and Acknowledgments The authors express special thanks to Chizuko Takigawa, Takuya Shinjo, Akihiko Suga, Satoshi Inoue, Masayuki Ikenaga, and Hiroyuki Kohara for data collection. They also extend thanks to Hiroko Sagawa, Fumiko Takashita, and Ai Ishitoya for managing the study. This research was supported by a Third Term Comprehensive Control Research for Cancer Health and Labor Sciences Research Grant of the Ministry of Health, Labor and Welfare of Japan. The authors declare no conflicts of interest.
References 1. Donabedian A. The quality of care. How can it be assessed? JAMA 1988;260:1743e1748. 2. Cella DF, Tulsky DS, Gray G, et al. The Functional Assessment of Cancer Therapy scale: development and validation of the general measure. J Clin Oncol 1993;11:570e579. 3. Aaronson NK, Ahmedzai S, Bergman B, et al. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst 1993;85:365e376. 4. Teno JM, Clarridge B, Casey V, EdgmanLevitan S, Fowler J. Validation of toolkit afterdeath bereaved family member interview. J Pain Symptom Manage 2001;22:752e758. 5. Morita T, Chihara S, Kashiwagi T, Quality Audit Committee of the Japanese Association of Hospice and Palliative Care Unit. A scale to measure satisfaction of bereaved family receiving inpatient palliative care. Palliat Med 2002;16:141e150. 6. Steinhauser KE, Clipp EC, Bosworth HB, et al. Measuring quality of life at the end of life: validation of the QUAL-E. Palliat Support Care 2004;2:3e14.
8
Miyashita et al.
Vol.
-
No.
- -
2013
7. 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;35:486e498.
13. Morita T, Miyashita M, Yamagishi A, et al. A region-based palliative care intervention trial using the mixed-method approach: Japan OPTIM study. BMC Palliat Care 2012;11:2.
8. Tishelman C, Lovgren M, Broberger E, Hamberg K, Sprangers MAG. Are the most distressing concerns of patients with inoperable lung cancer adequately assessed? A mixed-methods analysis. J Clin Oncol 2010;28:1942e1949.
14. Emanuel EJ, Emanuel LL. The promise of a good death. Lancet 1998;351(Suppl 2):SII21eSII29.
9. Teno JM, Lima JC, Lyons KD. Cancer patient assessment and reports of excellence: reliability and validity of advanced cancer patient perceptions of the quality of care. J Clin Oncol 2009;27:1621e1626. 10. 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;27:492e501. 11. Miyashita M, Morita T, Tsuneto S, et al. The Japan HOspice and Palliative Care Evaluation study (J-HOPE study): study design and characteristics of participating institutions. Am J Hosp Palliat Med 2008;25:223e232. 12. Miyashita M, Morita T, Hirai K. Evaluation of end-of-life cancer care from the perspective of bereaved family members: the Japanese experience. J Clin Oncol 2008;26:3845e3852.
15. Stewart AL, Teno J, Patrick DL, Lynn J. The concept of quality of life of dying persons in the context of health care. J Pain Symptom Manage 1999;17:93e108. 16. Basch E, Abernethy AP, Mullins CD, et al. Recommendations for incorporating patient-reported outcomes into clinical comparative effectiveness research in adult oncology. J Clin Oncol 2012;30: 4249e4255. 17. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010;363:733e742. 18. Groenvold M, Petersen MA, Aaronson NK, et al. The development of the EORTC QLQ-C15-PAL: a shortened questionnaire for cancer patients in palliative care. Eur J Cancer 2006;42:55e64. 19. Aspinal F, Addington-Hall J, Hughes R, Higginson IJ. Using satisfaction to measure the quality of palliative care: a review of the literature. J Adv Nurs 2003;42:324e339.
Appendix Care Evaluation ScaledPatient Version (CES-P) I. Physical care by physician 1. Doctors try to relieve your physical discomfort. 2. Doctors deal promptly with your uncomfortable symptoms. 3. Doctors have adequate knowledge and skills. II. Physical care by nurse 4. Nurses respond promptly to your needs. 5. Nurses have adequate knowledge and skills. 6. Nurses help you to enjoy daily life. III. Psychoexistential care 7. Doctors and nurses pay attention to relieving your concerns and worries. 8. Doctors and nurses take appropriate measures when you become depressed. 9. Doctors and nurses try so that your hope would be accomplished. IV. Help with decision making by physician 10. The doctors give sufficient explanations to you about your present condition and the details of your medical treatment. 11. The doctors give sufficient explanations to you about the expected outcome. 12. Consideration is given so that you can participate in the selection of treatment. V. Environment 13. Hospital or room is convenient and comfortable. 14. Sound proofing measures for privacy are adequate. 15. Toilet and washstand facilities are adequate. VI. Cost 16. The contents of the bills are easy to understand. 17. The total cost is reasonable. VII. Availability 18. Admission (use) is possible when necessary without waiting.
Vol.
-
No.
- -
2013
Care Evaluation ScaledPatient Version
19. The procedures of admission (use) are simple. 20. Admission (use) is in accordance with the wishes of you and your family. VIII.Coordination and consistency 21. There is good cooperation among staff members, such as doctors and nurses. 22. The same doctors and nurses provide your care. 23. Treatment is planned with appropriate consideration of the previous course of the disease.
9
