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Discordance in Perceived Needs Between Patients and Physicians in Oncology Practice: A Nationwide Survey in Korea
Abstract
Identification of supportive care needs in patients with cancer is essential for planning appropriate interventions. We aimed to determine patient–physician concordance in perceived supportive care needs in cancer care and to explore the predictors and potential consequences of patient–physician concordance.
A national, multicenter, cross-sectional survey of patient–physician dyads was performed, and 97 oncologists (participation rate, 86.5%) and 495 patients (participation rate, 87.4%) were included. A short form of the Comprehensive Needs Assessment Tool for Cancer Patients was independently administered to patients and their oncologists. Concordance and agreement rates between physicians and patients were calculated. Mixed logistic regression was used to identify predictors of concordance and to explore the association of concordance with patient satisfaction and trust in physicians.
Physicians systematically underestimated patient needs and patient–physician concordance was generally poor, with weighted κ statistics ranging from 0.04 to 0.15 for individual items and Spearman's ρ coefficients ranging from 0.11 to 0.21 for questionnaire domains. Length of experience as oncologist was the only significant predictor of concordance (adjusted odds ratio for overall concordance [aOR] = 2.09; 95% CI, 1.02 to 4.31). Concordance was not significantly associated with overall patient satisfaction (aOR = 1.24; 95% CI, 0.74 to 2.07) or trust in physician (aOR = 1.17; 95% CI, 0.76 to 1.81).
The recognition of the needs of patients with cancer can deeply affect cancer care.1 Concordance between patient and physician regarding needs perceptions can favorably affect patient health status,2 and problems that are acknowledged both by the patient and the physician are more often reported as improved by the patient.1 In addition, greater patient–physician concordance may result in higher satisfaction,3 increased adherence,4,5 and even improved health outcomes.6–8
Patients and physicians, however, have often discordant perceptions regarding patient needs and problems,2 including differences in the identification of the principal problem for the scheduled visit,2,9 other problems needing follow-up,1,6 the patient's level of self-rated health,10 and the presence of distress or depression.11,12 Furthermore, patients and physicians often disagree on the contents of the consultation13 and on the services provided or received.14
Patients with cancer have multiple needs and problems and require multidisciplinary supportive care and effective coordination. Supportive care should include not only physical support but also informational, psychological, instrumental, social, and religious support, but oncologists tend to focus on cancer treatment.15 Indeed, oncologists are often ill-prepared and do not actively participate in the provision of supportive care.16 Discrepancy between patients and physicians in the expectation of the role of the oncologist in supportive care has been reported.17 Previous research regarding the physician's recognition of supportive care needs of the patient, however, has been limited by small sample size,18,19 the use of different needs assessment measures for patients and physicians,18 or the use of unmatched patient–physician samples.19
The present study was designed to examine the concordance between patients with cancer and their oncologists regarding patient needs for supportive care. Our specific objectives were to determine the level of patient-physician concordance in perceived supportive care needs, identify predictors of concordance, and evaluate the association of concordance with patient satisfaction and trust in physician.
We performed a nationwide survey in 2010 as a part of a government program to develop comprehensive supportive care in Korea. The program was developed and funded by the Korean Ministry of Health and Welfare and the National Cancer Center. Oncologists working at the National Cancer Center and nine regional cancer centers across Korea participated in the survey.
In each center, we purposefully selected approximately 10 board-certified oncologists, and each oncologist was asked to recruit five consecutive patients older than 18 years who were diagnosed with cancer and who had completed primary treatment. Of 111 oncologists invited, 97 agreed to participate and completed the survey according to the instructions (87.4% participation rate). Among 572 patients invited, 495 agreed to participate and completed the survey according to the instructions (86.5% participation rate). Most oncologists recruited five patients (77.3%), but there was some variation (range, one to 11 patients per oncologist). The study was approved by the institutional review board of the National Cancer Center, Korea.
Study oncologists provided a brief overview of the study to eligible patients and asked them their willingness to participate. On agreement, trained research coordinators explained details of the study to the patients and obtained written informed consent. The survey questionnaires were self-administered, and most patients completed the questionnaire without help. For each patient, the oncologist completed a parallel questionnaire on the patient's needs. Perceived patient needs were assessed by the shortened version of the Comprehensive Needs Assessment Tool (CNAT).20 Although there are several measures to assess supportive care needs, we used the CNAT because it is the most relevant questionnaire in our sociocultural context.20,21 The CNAT, developed at Korea's National Cancer Center, was designed to provide a direct and comprehensive assessment of the multidimensional impact of cancer on the lives of patients with cancer. The CNAT includes 59 questions in seven domains: information (10 items), psychological problems (10 items), health care staff (eight items), physical symptoms (12 items), hospital facilities and service (eight items), family/interpersonal problems (three items), and social/religious/spiritual support (five items). The questions in CNAT referred to the past month, and each item was answered using a 4-point Likert scale (0 = no need; 1 = low need; 2 = moderate need; and 3 = high need).
To minimize patient burden, we developed and validated a short form of CNAT (CNAT-SF) by selecting items that should be endorsed at least by 50% of patients as a need. The final version of the CNAT-SF consisted of 30 questions in five domains: information (eight items), psychological problems (seven items), health care staff (eight items), physical symptoms (three items), and hospital facilities and service (four items). Internal consistency of the CNAT-SF in our data was satisfactory, with Cronbach's α ranging from 0.76 to 0.92 and 0.88 to 0.94 for patients and physicians, respectively. For each domain, we calculated the average scores.
Patient satisfaction and trust in physician were measured using single 5-point scales (1 = “very unsatisfied” to 5 = “very satisfied” for satisfaction and 1 = “no trust” to 5 = “very high trust” for trust in physician).3,22 The patient survey also included the Hospital Anxiety and Depression Scale (HADS)23 and the Korean version of Instrumental Activities of Daily Living (K-IADL).24,25 Questions related to sociodemographic characteristics, including marital status, employment status, religion, and household income, and comorbidities, including hypertension, diabetes, hypercholesterolemia, and arthritis, were also asked. Information about cancer type, date of diagnosis, and Surveillance, Epidemiology, and End Results stage were retrieved from the hospital information system of each participating center. In addition to the CNAT-SF, the physician survey included questions related to their experience, such as clinical specialty and years of experience.
For each item and domain, the patients' and physicians' ratings were summarized using means and standard deviations and were compared using paired t tests. For each individual CNAT-SF item, the patient and his/her physician were considered concordant if they both rated same level of needs. Overall and domain-specific concordance scores were calculated as the number of concordant items for each patient–physician dyad. To quantify patient–physician concordance, we calculated weighted κ statistics for concordance in each individual item and Spearman's ρ for the concordance in each domain. In addition, we calculated the agreement rate for concordance in each individual item.26
To identify predictors of patient–physician concordance, we used mixed logistic regression models with patients nested within their physicians (xtmelogit command in STATA [STATA, College Station, TX]). The dependent variable for overall and domain-specific concordance was a variable that dichotomized concordance scores at their median value. On the basis of a review of the literature, the potential determinants of patient–physician concordance evaluated included patient and physician characteristics,2,9,13 mental health status (measured by HADS),12 physical health status (pain, disability measured by IADL, cancer type and stage, comorbidities),12,13 and continuity of care (measured as time to follow-up visit since diagnosis).1,6,27
To evaluate the association of patient–physician concordance with patient satisfaction and trust in physician, we dichotomized patient satisfaction and trust in physician as very high (5 points) or other (1 to 4 points) due to the highly skewed distribution of these variables (ie, mean score of 4.4 and 4.6 for patient satisfaction and trust in physician, respectively). These dichotomous variables were then used as outcomes in mixed logistic regression models with overall concordance scores and other covariates as predictors. Statistical analyses were performed using SAS version 9.13 (SAS Institute, Cary, NC) and STATA 11.0. Statistical significance was defined as P < .05 on two-tailed analyses.
The mean age of study patients was 58.1 years (SD = 12.4 years), and there were slightly more women than men (54.1% v 45.9%, respectively; Table 1). Stomach, colorectal, and breast cancer were the three most common primary cancers. Most patients had in situ/local (45.9%) or regional (37.9%) cancers and had received surgical treatment (78.6%). On average, patients were surveyed 33.4 months (SD = 36.1 months) after diagnosis, with 46.1% of patients diagnosed in the 2 years before the survey. The majority of participating physicians were men (79.4%), and 48.5% of them had more than 10 years of experience as oncologists (Appendix Table A1, online only). The proportions of surgical, medical, and radiologic oncologists were 62.9%, 32.0%, and 5.2%, respectively.
|
| Characteristic | No. | % |
|---|---|---|
| Age, years | ||
| Mean | 58.1 | |
| SD | 12.4 | |
| < 60 | 267 | 53.9 |
| ≥ 60 | 228 | 46.1 |
| Sex | ||
| Female | 268 | 54.1 |
| Male | 227 | 45.9 |
| Marital status | ||
| Unmarried | 98 | 19.8 |
| Married | 397 | 80.2 |
| Education | ||
| Less than high school | 231 | 46.9 |
| High school and above | 262 | 53.1 |
| Employment | ||
| No | 295 | 60.1 |
| Yes | 196 | 39.9 |
| Household income, KRW | ||
| < 200 million | 330 | 67.1 |
| ≥ 200 million | 162 | 32.9 |
| Cancer type | ||
| Stomach | 66 | 13.3 |
| Lung | 46 | 9.3 |
| Liver | 41 | 8.3 |
| Colon/rectum | 78 | 15.8 |
| Breast | 72 | 14.5 |
| Cervix | 42 | 8.5 |
| Other | 150 | 30.3 |
| SEER stage | ||
| In situ and local | 227 | 45.9 |
| Regional | 187 | 37.8 |
| Distant | 68 | 13.7 |
| Unknown | 13 | 2.6 |
| Time since diagnosis, months | ||
| Mean | 33.4 | |
| SD | 36.1 | |
| < 24 | 228 | 46.1 |
| ≥ 24 | 267 | 53.9 |
| Treatment received | ||
| Surgery | 389 | 78.6 |
| Chemotherapy | 274 | 55.4 |
| Radiotherapy | 72 | 14.5 |
| Comorbidities (any) | ||
| No | 277 | 56.0 |
| Yes | 218 | 44.0 |
| Impairment in activities of daily living* (any) | ||
| No | 326 | 65.9 |
| Yes | 169 | 34.1 |
| Anxiety | ||
| No | 447 | 91.2 |
| Yes | 43 | 8.8 |
| Depression | ||
| No | 367 | 74.4 |
| Yes | 126 | 25.6 |
Abbreviations: KRW, Korean Won; SD, standard deviation; SEER, Surveillance, Epidemiology, and End Results.
*Measured by Instrumental Activity of Daily Living–Korean version.
For every domain, oncologists substantially underestimated the perceived patient needs (Table 2). Patient–physician concordance in assessing patient needs was generally poor, with weighted κ statistics ranging from 0.04 to 0.15 and agreement rates ranging from 26.2% to 37.9% across individual items. By domains, Spearman's ρ coefficients for patient–physician concordance ranged from 0.11 for psychological problems to 0.21 for facilities and services. The frequency distribution of the responses to each individual item by patients and oncologists are shown in Appendix Table A2 (online only). In addition to evaluating concordance using the original 4-point Likert scale categories, we performed additional analyses of concordance after dichotomizing each item (no need v any need), with similar findings (Appendix Table A3, online only).
|
| Item/Domain | Level of Perceived Needs | Patient–Physician Concordance | |||||||
|---|---|---|---|---|---|---|---|---|---|
| Patient's Rating | Physician's Rating | Difference | P | Agreement (%) | Weighted κ/ Spearman's ρ* | P | |||
| Mean | SD | Mean | SD | ||||||
| Domain 1: Information (8 items) | |||||||||
| Current status of my illness and its future course | 2.17 | 1.02 | 2.18 | 0.86 | 0.01 | .80 | 36.4 | 0.08 | .01 |
| Tests and treatment | 2.18 | 1.04 | 2.19 | 0.85 | 0.01 | .92 | 37.9 | 0.07 | .02 |
| Symptoms requiring a hospital visit | 2.17 | 1.02 | 1.93 | 0.90 | −0.24 | < .01 | 35.2 | 0.11 | < .01 |
| Benefits, side effects, and application of current medication | 1.81 | 1.25 | 1.72 | 1.00 | −0.09 | .18 | 30.8 | 0.15 | < .01 |
| Self-care at home | 2.08 | 1.07 | 1.83 | 0.89 | −0.24 | < .01 | 31.2 | 0.09 | < .01 |
| Diet | 2.20 | 1.04 | 1.88 | 0.93 | −0.32 | < .01 | 35.4 | 0.12 | < .01 |
| Hospitals or physicians | 1.83 | 1.21 | 1.43 | 0.96 | −0.40 | < .01 | 30.0 | 0.12 | < .01 |
| Financial support for medical expenses | 2.34 | 1.00 | 1.54 | 1.06 | −0.80 | < .01 | 25.8 | 0.04 | .12 |
| Domain score | 2.10 | 0.81 | 1.84 | 0.71 | −0.26 | < .01 | 0.16 | < .01 | |
| Domain 2: Psychological problems (7 items) | |||||||||
| Unidentifiable anxiety | 1.75 | 1.20 | 1.68 | 0.94 | −0.07 | .27 | 30.0 | 0.08 | .01 |
| Fear of recurrence | 2.07 | 1.16 | 1.92 | 0.93 | −0.15 | .02 | 29.6 | 0.06 | .06 |
| Worries about treatment results | 1.85 | 1.20 | 1.81 | 0.96 | −0.04 | .54 | 27.5 | 0.07 | .03 |
| Concerns about family | 1.87 | 1.17 | 1.50 | 0.96 | −0.37 | < .01 | 26.2 | 0.06 | .03 |
| Worries about becoming a burden to others | 1.64 | 1.23 | 1.36 | 0.94 | −0.28 | < .01 | 28.8 | 0.09 | < .01 |
| Depression | 1.47 | 1.21 | 1.37 | 0.96 | −0.11 | .11 | 28.5 | 0.09 | < .01 |
| Feelings of anger, irritability, or nervousness | 1.63 | 1.18 | 1.32 | 0.94 | −0.31 | < .01 | 27.5 | 0.08 | < .01 |
| Domain score | 1.76 | 0.93 | 1.56 | 0.77 | −0.19 | < .01 | 0.11 | .01 | |
| Domain 3: Health care staff (8 items) | |||||||||
| Being treated by physicians with respect | 2.05 | 1.08 | 2.01 | 0.92 | −0.04 | .48 | 34.6 | 0.10 | < .01 |
| Physician's easy, specific, and honest explanation | 2.36 | 0.95 | 2.12 | 0.90 | −0.24 | < .01 | 36.6 | 0.08 | .01 |
| Easy access to physicians | 2.38 | 0.93 | 2.01 | 0.91 | −0.38 | < .01 | 34.2 | 0.07 | .02 |
| Involvement in treatment-related decision making | 1.88 | 1.15 | 1.67 | 0.98 | −0.2 | < .01 | 32.6 | 0.13 | < .01 |
| Collaboration and communication among health care staff | 2.19 | 1.00 | 1.80 | 0.93 | −0.39 | < .01 | 34.3 | 0.10 | < .01 |
| Nurse's sincere interest and empathy | 2.21 | 0.97 | 1.84 | 0.93 | −0.37 | < .01 | 29.7 | 0.05 | .10 |
| Nurse's explanation about treatment | 2.26 | 0.96 | 1.79 | 0.95 | −0.47 | < .01 | 29.9 | 0.06 | .04 |
| Nurse's prompt attending to discomfort and pain | 2.31 | 0.97 | 1.81 | 0.99 | −0.50 | < .01 | 31.7 | 0.07 | .02 |
| Domain score | 2.21 | 0.81 | 1.88 | 0.79 | −0.32 | < .01 | 0.14 | < .01 | |
| Domain 4: Physical symptoms (3 items) | |||||||||
| Pain | 1.63 | 1.25 | 1.33 | 1.08 | −0.30 | < .01 | 30.7 | 0.12 | < .01 |
| Lack of energy and fatigue | 1.83 | 1.11 | 1.52 | 0.97 | −0.31 | < .01 | 30.7 | 0.09 | < .01 |
| Numbness and tingling | 1.60 | 1.22 | 1.28 | 1.02 | −0.32 | < .01 | 32.9 | 0.13 | < .01 |
| Domain score | 1.69 | 1.01 | 1.38 | 0.92 | −0.31 | < .01 | 0.15 | < .01 | |
| Domain 5: Facilities and hospital services (4 items) | |||||||||
| Short waiting period for an appointment | 2.19 | 1.03 | 1.92 | 1.00 | −0.26 | < .01 | 33.1 | 0.07 | .03 |
| Pleasant treatment environment | 2.26 | 1.02 | 1.91 | 0.96 | −0.35 | < .01 | 37.4 | 0.14 | < .01 |
| Rehabilitation medical services | 1.75 | 1.20 | 1.57 | 1.01 | −0.18 | < .01 | 31.8 | 0.14 | < .01 |
| Comprehensive counseling and guidance by a designated medical staff | 2.11 | 1.11 | 1.79 | 1.01 | −0.32 | < .01 | 34.3 | 0.12 | < .01 |
| Domain score | 2.08 | 0.83 | 1.80 | 0.86 | −0.28 | < .01 | 0.21 | < .01 | |
Abbreviation: SD, standard deviation.
*Weighted κ for items; Spearman's ρ for domains.
In mixed logistic regression models, the only significant predictor of overall concordance score was the length of the physician's clinical experience as oncologist (adjusted odds ratio [aOR] comparing ≥ 10 v < 10 years of experience = 2.09; 95% CI, 1.02 to 4.31). Although length of physician's clinical experience was significantly related to the overall concordance score, it was not significantly related to any individual domain concordance score. The only other significant association was between sex and health care staff domain scores (aOR = 0.54; 95% CI, 0.31 to 0.93), with male patients reporting lower concordance with oncologists (Appendix Table A4, online only). Finally, the overall concordance score was not significantly associated with overall patient satisfaction (aOR = 1.24; 95% CI, 0.74 to 2.07) or trust in physician (aOR = 1.17; 95% CI, 0.76 to 1.81; Table 3).
|
| Variable | Univariate OR | 95% CI | Multivariate OR* | 95% CI | Multivariate OR† | 95% CI |
|---|---|---|---|---|---|---|
| Trust in physician, very high v other | 1.18 | 0.72 to 1.92 | 1.30 | 0.78 to 2.17 | 1.24 | 0.74 to 2.07 |
| Overall satisfaction in care, very high v other | 1.28 | 0.83 to 1.95 | 1.22 | 0.79 to 1.89 | 1.17 | 0.76 to 1.81 |
Abbreviation: OR, odds ratio.
*Adjusted for patient-level covariates as specified in Table 2.
†Adjusted for both patient-level and physician-level covariates as specified in Table 2.
In this nationwide study, we found that oncologists underestimated their patients' needs for supportive care, and there was poor concordance between patients and physicians in the perception of those needs. The duration of the oncologist experience was the only factor associated with increased overall patient–physician concordance. In addition, patient–physician concordance was positively but nonsignificantly associated with overall patient satisfaction and trust in physician.
A key finding of our study was that oncologists underestimated the supportive care needs of their patients across all domains. Previous studies have reported either a tendency of physicians to overestimate patient perceived needs and underestimate their levels of anxiety and depression18 or mixed results with under- and overestimation of patient needs.19 The discrepancies between these studies and our findings may be due to differences in assessment tools, setting characteristics, or cultural norms across studies. In addition, the sample sizes of previous studies were relatively small compared with our study and may have been more affected by random variability.
In addition to underestimating perceived patient needs, there was also poor concordance between patients and physicians in assessing perceived supportive care needs, overall and by domains. The degree of concordance, however, varied by domain according to the nature of the needs.9 The domain with highest patient–physician concordance was facilities and hospital services, arguably the most objective of the domains. The information domain, which consists mainly of the information on current status of illness, adverse effects, and benefits of treatment, diet, and self care, followed next. This is expected because these are the areas that oncologists usually focus on. The domain with lowest concordance was psychological problems, a domain that comprises highly subjective items. This is consistent with previous studies showing lower concordance in psychosocial topics when compared with medical ones2 and that oncologists frequently failed to recognize distress or depression in their patients.11,12
Underestimation of perceived patient needs and poor patient–physician concordance indicate that oncologists do not actually identify the needs of their patients.18 The level of concordance observed in our study was still lower than that observed in previous patient–physician dyad studies, mostly performed in primary care settings.1,2,6,8,13,28,29 Patients with cancer, however, tend to have more needs that primary care patients, and, in the oncology clinic, the reason for the encounter is usually cancer treatment and recurrence surveillance, not supportive care. In addition, needs are highly subjective constructs, and if not clearly articulated, needs may be very hard to be recognized by others. A patient may not perceive a need related to an objective problem or may feel a strong need for apparently trivial problems. Indeed, patient needs are in poor agreement with their symptoms or functioning, especially in patients with complex clinical problems.30
In our study, the length of experience as an oncologist was associated with higher concordance in perception of patient needs. More experienced oncologists may have learned from similar patients in the past or may have developed interpersonal skills to better identify patient needs. Other patient or physician characteristics were not consistently associated with patient–physician concordance in perceived patient needs. Contrary to our expectation, patient–physician concordance did not increase with time since diagnosis, which could be a proxy marker for the duration of the patient–oncologist relationship. A study in Australia showed that the oncologists' perception of a better knowledge of their patients and closer rapport with them was associated with better awareness of their patients' perceived needs, emphasizing the benefit of continuous care.18 In addition, perceived workload pressure by the oncologist was inversely associated with patient–physician concordance.18 According to the data from our previous nationwide survey, the average oncology consultation time was only 7 to 8 minutes (unpublished data), showing high workload for Korean oncologists. Because of such high workload and short consultation times, it is possible that a longer patient–physician relationship could not translate into better assessment of patient needs.
The physicians' underestimation and poor identification of the supportive care needs of their patients emphasizes the potential importance of systematic assessment of the needs of patients with cancer. Indeed, providing feedback to physicians with respect to their patients' perceived needs improved patient–physician concordance in the general practice setting.29 Routine needs assessment tools can be completed during waiting time using electronic systems, and summaries of patients responses could be provided to their oncologists before consultation.31 Systematic needs assessment could also result in more effective use of resources because more time could be dedicated to problems that are perceived as important by the patients.18 Routine needs assessment and feedback could also improve physical symptom control and decrease anxiety, depression, and perceived needs.31 In addition to systematic needs assessment, physicians could also receive training on how to identify and address patient needs, as training on communication and needs assessment skills can improve patient–physician concordance.11 However, physicians rarely receive training on how to identify and address patient needs and may be unprepared to perform routine needs assessment.19
In our study, higher concordance in perceived needs was not associated with increased patient satisfaction or trust in physician. It is possible that identifying supportive care needs does not result in any action by the oncologist to address those needs. Oncologists may perceive that their main responsibility is to manage physical symptoms and to control the disease rather than dealing with psychosocial issues.32 Even if oncologists perceived addressing patient needs as an integral part of their clinical responsibility, there may be few services where they can appropriately refer the patients. Finally, patients with cancer may have interpreted the question asking about their satisfaction with overall care as satisfaction with cancer treatment. Research on patient satisfaction has shown that a majority of patients with cancer report being satisfied with clinical care, but they are less satisfied with the information and support that they receive.33 We did not distinguish between the two types of satisfaction, and overall satisfaction may not be a sensitive marker to evaluate the impact of unmet needs on patient satisfaction.
Several limitations of our study should be mentioned. First, the single 4-point Likert scales used in CNAT may not fully capture the multistep process of measuring needs. Conceptual uncertainties defining needs as problems may underlie such methodologic limitations,33 which are compounded by the lack of a gold standard for assessing patient needs.21 Second, we did not have information on some variables potentially associated with concordance, such as the physician's perception of the knowledge and rapport with the patient or the perceived workload.18 Third, our outcome measures, patient satisfaction and trust in physician, are not good proxy measures for patient–physician interactions, and they do not capture other important elements of these interactions, including communication. Further studies placing patient needs assessment in the broader framework of the overall patient–physician interaction34,35 are warranted. Finally, as a cross-sectional study, we could not determine whether patient–physician concordance affects patient outcome at follow-up visits.1,6,8 Nevertheless, we believe that our large, nationwide sample of patient–oncologist dyads with independent administration of the same needs assessment questionnaire provided novel insights into this important aspect of patient–physician interaction.
We believe that our findings have important implications for patients with cancer not only in Korea, but also elsewhere. First, our study indicates that oncology patients and their oncologists are likely to have poor concordance in their perceived needs. Lack of patient–physician concordance in perceived needs has also been observed in primary care,1,2,6,9 but given the higher number of problems of oncology patients, patient–physician discordance is likely to have a very high impact in cancer care. Second, the high level of discordance found in our study might be related to the fact that oncologists do not consider supportive care as their primary task, but rather focus on active treatment.32 Additional research is needed to better understand the attitudes of oncologists toward patients needs and, eventually, to modify training and practice standards to better align patient needs with physician perceptions.
The delivery of high-quality cancer care requires effective communication between patients and physicians.9 However, our study suggests that oncologists do not reliably recognize patient needs of supportive care. Despite the growing evidence of their possible benefits, needs assessment and multidisciplinary supportive care have not been routinely implemented in oncology practice as a result of concerns about resources, feasibility, and clinical relevance.31 None of the participating cancer centers in this study used routine supportive care needs screening, nor had they established multidisciplinary supportive care teams. Our findings of marked discordance between patients and physicians in needs perception is an important first step for the development of comprehensive supportive care and deserves follow-up investigations to identify its clinical consequences and to reduce this problem in oncology practice.
Supported by a grant of Cancer Research and Control from the National Cancer Center, Korea (Grant No. 0910191), a grant of the National R&D Program for Cancer Control (Grant No. 1021430), and the Ministry of Health and Welfare, Korea (administrative support).
J.H.P. and D.W.S. had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.
Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.
The author(s) indicated no potential conflicts of interest.
Conception and design: Dong Wook Shin, So Young Kim, Juhee Cho, Eun-Cheol Park, Jong-Hyock Park
Financial support: Jong-Hyock Park
Administrative support: So Young Kim, Bo Ram Park, Eun-Cheol Park, Jong-Hyock Park
Provision of study materials or patients: Gyu Young Chai, Hak-Soon Kim, Jong-Hyock Park
Collection and assembly of data: Gyu Young Chai, Hak-Soon Kim, Bo Ram Park, Jong-Hyock Park
Data analysis and interpretation: Dong Wook Shin, So Young Kim, Juhee Cho, Robert W. Sanson-Fisher, Eliseo Guallar, Jong-Hyock Park
Manuscript writing: All authors
Final approval of manuscript: All authors
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The following 10 Korean institutions (regional cancer centers) participated in this study and data collection (in alphabetical order): National Cancer Center (Goyang), Busan Regional Cancer Center, Chungbuk Regional Cancer Center, Daegu-Gyeongbuk Regional Cancer Center, Daejeon Regional Cancer Center, Gangwon Regional Cancer Center, Gyeongnam Regional Cancer Center, Jeju Regional Cancer Center, Jeonbuk Regional Cancer Center, and Jeonnam Regional Cancer Center.
|
| Characteristic | No. | % |
|---|---|---|
| Time after board certification, years | ||
| < 10 | 50 | 51.5 |
| ≥ 10 | 47 | 48.5 |
| Sex | ||
| Female | 20 | 20.6 |
| Male | 77 | 79.4 |
| Specialty | ||
| Surgical oncologist | 61 | 62.9 |
| Medical oncologist | 31 | 32.0 |
| Radiological oncologist | 5 | 5.2 |
|
| Item/Domain | Patients' Response | Physicians' Response | ||||||||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Missing | None | Low | Moderate | High | Missing | None | Low | Moderate | High | |||||||||||
| No. | % | No. | % | No. | % | No. | % | No. | % | No. | % | No. | % | No. | % | No. | % | No. | % | |
| Domain 1: Information (8 items) | ||||||||||||||||||||
| Current status of my illness and its future course | 0 | 0 | 56 | 11.3 | 54 | 10.9 | 136 | 27.5 | 249 | 50.3 | 0 | 0 | 32 | 6.5 | 51 | 10.3 | 207 | 41.8 | 205 | 41.4 |
| Tests and treatment | 1 | 0.2 | 57 | 11.5 | 57 | 11.5 | 119 | 24.0 | 261 | 52.7 | 0 | 0 | 29 | 5.9 | 55 | 11.1 | 204 | 41.2 | 207 | 41.8 |
| Symptoms requiring a hospital visit | 3 | 0.6 | 57 | 11.5 | 51 | 10.3 | 136 | 27.5 | 248 | 50.1 | 0 | 0 | 41 | 8.3 | 98 | 19.8 | 212 | 42.8 | 144 | 29.1 |
| Benefits, side effects, and application of current medication | 2 | 0.4 | 129 | 26.1 | 57 | 11.5 | 87 | 17.6 | 220 | 44.4 | 0 | 0 | 85 | 17.2 | 80 | 16.2 | 217 | 43.8 | 113 | 22.8 |
| Self-care at home | 5 | 1.0 | 66 | 13.3 | 62 | 12.5 | 130 | 26.3 | 232 | 46.9 | 0 | 0 | 47 | 9.5 | 102 | 20.6 | 232 | 46.9 | 114 | 23.0 |
| Diet | 1 | 0.2 | 59 | 11.9 | 49 | 9.9 | 121 | 24.4 | 265 | 53.5 | 0 | 0 | 50 | 10.1 | 99 | 20.0 | 208 | 42.0 | 138 | 27.9 |
| Hospitals or physicians | 1 | 0.2 | 117 | 23.6 | 60 | 12.1 | 106 | 21.4 | 211 | 42.6 | 0 | 0 | 106 | 21.4 | 131 | 26.5 | 198 | 40.0 | 60 | 12.1 |
| Financial support for medical expenses | 2 | 0.4 | 48 | 9.7 | 44 | 8.9 | 91 | 18.4 | 310 | 62.6 | 0 | 0 | 112 | 22.6 | 108 | 21.8 | 169 | 34.1 | 106 | 21.4 |
| Domain 2: Psychological problems (7 items) | ||||||||||||||||||||
| Unidentifiable anxiety | 1 | 0.2 | 122 | 24.6 | 66 | 13.3 | 118 | 23.8 | 188 | 38.0 | 0 | 0 | 68 | 13.7 | 121 | 24.4 | 208 | 42.0 | 98 | 19.8 |
| Fear of recurrence | 1 | 0.2 | 86 | 17.4 | 60 | 12.1 | 82 | 16.6 | 266 | 53.7 | 0 | 0 | 48 | 9.7 | 93 | 18.8 | 206 | 41.6 | 148 | 29.9 |
| Worries about treatment results | 1 | 0.2 | 109 | 22.0 | 72 | 14.5 | 96 | 19.4 | 217 | 43.8 | 0 | 0 | 65 | 13.1 | 88 | 17.8 | 217 | 43.8 | 125 | 25.3 |
| Concerns about family | 3 | 0.6 | 101 | 20.4 | 71 | 14.3 | 111 | 22.4 | 209 | 42.2 | 0 | 0 | 85 | 17.2 | 159 | 32.1 | 169 | 34.1 | 82 | 16.6 |
| Worries about becoming a burden to others | 2 | 0.4 | 138 | 27.9 | 78 | 15.8 | 99 | 20.0 | 178 | 36.0 | 0 | 0 | 101 | 20.4 | 172 | 34.7 | 164 | 33.1 | 58 | 11.7 |
| Depression | 1 | 0.2 | 159 | 32.1 | 86 | 17.4 | 106 | 21.4 | 143 | 28.9 | 0 | 0 | 106 | 21.4 | 164 | 33.1 | 163 | 32.9 | 62 | 12.5 |
| Feelings of anger, irritability, or nervousness | 1 | 0.2 | 131 | 26.5 | 77 | 15.6 | 130 | 26.3 | 156 | 31.5 | 0 | 0 | 117 | 23.6 | 153 | 30.9 | 177 | 35.8 | 48 | 9.7 |
| Domain 3: Health care staff (8 items) | ||||||||||||||||||||
| Being treated by physicians with respect | 0 | 0 | 72 | 14.5 | 60 | 12.1 | 134 | 27.1 | 229 | 46.3 | 0 | 0 | 41 | 8.3 | 84 | 17.0 | 200 | 40.4 | 170 | 34.3 |
| Physician's easy, specific, and honest explanation | 3 | 0.6 | 42 | 8.5 | 38 | 7.7 | 111 | 22.4 | 301 | 60.8 | 0 | 0 | 34 | 6.9 | 71 | 14.3 | 190 | 38.4 | 200 | 40.4 |
| Easy access to physicians | 1 | 0.2 | 36 | 7.3 | 45 | 9.1 | 106 | 21.4 | 307 | 62.0 | 0 | 0 | 38 | 7.7 | 88 | 17.8 | 201 | 40.6 | 168 | 33.9 |
| Involvement in treatment-related decision making | 1 | 0.2 | 100 | 20.2 | 60 | 12.1 | 135 | 27.3 | 199 | 40.2 | 0 | 0 | 68 | 13.7 | 141 | 28.5 | 170 | 34.3 | 116 | 23.4 |
| Collaboration and communication among health care staff | 0 | 0 | 55 | 11.1 | 46 | 9.3 | 146 | 29.5 | 248 | 50.1 | 0 | 0 | 59 | 11.9 | 98 | 19.8 | 221 | 44.6 | 117 | 23.6 |
| Nurse's sincere interest and empathy | 0 | 0 | 44 | 8.9 | 60 | 12.1 | 139 | 28.1 | 252 | 50.9 | 0 | 0 | 52 | 10.5 | 103 | 20.8 | 210 | 42.4 | 130 | 26.3 |
| Nurse's explanation about treatment | 0 | 0 | 43 | 8.7 | 52 | 10.5 | 131 | 26.5 | 269 | 54.3 | 0 | 0 | 57 | 11.5 | 117 | 23.6 | 194 | 39.2 | 127 | 25.7 |
| Nurse's prompt attending to discomfort and pain | 0 | 0 | 45 | 9.1 | 44 | 8.9 | 117 | 23.6 | 289 | 58.4 | 0 | 0 | 62 | 12.5 | 112 | 22.6 | 178 | 36.0 | 143 | 28.9 |
| Domain 4: Physical symptoms (3 items) | ||||||||||||||||||||
| Pain | 0 | 0 | 148 | 29.9 | 65 | 13.1 | 102 | 20.6 | 180 | 36.4 | 0 | 0 | 143 | 28.9 | 136 | 27.5 | 125 | 25.3 | 91 | 18.4 |
| Lack of energy and fatigue | 0 | 0 | 94 | 19.0 | 73 | 14.7 | 151 | 30.5 | 177 | 35.8 | 0 | 0 | 87 | 17.6 | 149 | 30.1 | 175 | 35.4 | 84 | 17.0 |
| Numbness and tingling | 2 | 0.4 | 145 | 29.3 | 67 | 13.5 | 121 | 24.4 | 160 | 32.3 | 0 | 0 | 140 | 28.3 | 142 | 28.7 | 147 | 29.7 | 66 | 13.3 |
| Domain 5: Facilities and hospital services (4 items) | ||||||||||||||||||||
| Short waiting period for an appointment | 0 | 0 | 56 | 11.3 | 56 | 11.3 | 123 | 24.8 | 260 | 52.5 | 0 | 0 | 54 | 10.9 | 103 | 20.8 | 165 | 33.3 | 173 | 34.9 |
| Pleasant treatment environment | 0 | 0 | 58 | 11.7 | 34 | 6.9 | 123 | 24.8 | 280 | 56.6 | 0 | 0 | 52 | 10.5 | 94 | 19.0 | 195 | 39.4 | 154 | 31.1 |
| Rehabilitation medical services | 1 | 0.2 | 124 | 25.1 | 58 | 11.7 | 128 | 25.9 | 184 | 37.2 | 0 | 0 | 96 | 19.4 | 115 | 23.2 | 189 | 38.2 | 95 | 19.2 |
| Comprehensive counseling and guidance by a designated medical staff | 2 | 0.4 | 75 | 15.2 | 52 | 10.5 | 108 | 21.8 | 258 | 52.1 | 0 | 0 | 72 | 14.5 | 99 | 20.0 | 183 | 37.0 | 141 | 28.5 |
Abbreviation: CNAT-SF, Comprehensive Needs Assessment Tool–Short Form.
|
| Items/Domains | Level of Perceived Needs | Level of Concordance | ||||||
|---|---|---|---|---|---|---|---|---|
| Patients' Report of Any Need | Physicians' Report of Any Need | P* | Agreement (%) | Simple κ/ Spearman's ρ† | P | |||
| No. | % | No. | % | |||||
| Domain 1: Information (8 items) | ||||||||
| Current status of my illness and its future course | 439 | 88.7 | 463 | 93.5 | < .01 | 85.1 | 0.08 | .05 |
| Tests and treatment | 437 | 88.5 | 466 | 94.1 | < .01 | 85.0 | 0.07 | .11 |
| Symptoms requiring a hospital visit | 435 | 88.4 | 454 | 91.7 | .06 | 83.9 | 0.10 | .02 |
| Benefits, side effects, and application of current medication | 364 | 73.8 | 410 | 82.8 | < .01 | 72.8 | 0.21 | < .01 |
| Self-care at home | 424 | 86.5 | 448 | 90.5 | .05 | 81.0 | 0.07 | .10 |
| Diet | 435 | 88.1 | 445 | 89.9 | .32 | 83.2 | 0.14 | < .01 |
| Hospitals or physicians | 377 | 76.3 | 389 | 78.6 | .35 | 71.9 | 0.2 | < .01 |
| Financial support for medical expenses | 445 | 90.3 | 383 | 77.4 | < .01 | 73.4 | 0.05 | .25 |
| Domain score | 2.10 | 0.81 | 1.84 | 0.71 | < .01 | 0.16 | < .01 | |
| Domain 2: Psychological problems (7 items) | ||||||||
| Unidentifiable anxiety | 372 | 75.3 | 427 | 86.3 | < .01 | 70.5 | 0.07 | .11 |
| Fear of recurrence | 408 | 82.6 | 447 | 90.3 | < .01 | 76.9 | 0.03 | .51 |
| Worries about treatment results | 385 | 77.9 | 430 | 86.9 | < .01 | 73.7 | 0.11 | .01 |
| Concerns about family | 391 | 79.5 | 410 | 82.8 | .16 | 73.2 | 0.13 | < .01 |
| Worries about becoming a burden to others | 355 | 72 | 394 | 79.6 | < .01 | 67.3 | 0.12 | < .01 |
| Depression | 335 | 67.8 | 389 | 78.6 | < .01 | 64.2 | 0.10 | .02 |
| Feelings of anger, irritability, or nervousness | 363 | 73.5 | 378 | 76.4 | .27 | 66.8 | 0.12 | < .01 |
| Domain score | 1.76 | 0.93 | 1.56 | 0.77 | < .01 | 0.11 | .01 | |
| Domain 3: Health care staff (8 items) | ||||||||
| Being treated by physicians with respect | 423 | 85.5 | 454 | 91.7 | < .01 | 81.2 | 0.08 | .06 |
| Physician's easy, specific, and honest explanation | 450 | 91.5 | 461 | 93.1 | .30 | 87.8 | 0.15 | < .01 |
| Easy access to physicians | 458 | 92.7 | 457 | 92.3 | .80 | 87.5 | 0.09 | .04 |
| Involvement in treatment-related decision making | 394 | 79.8 | 427 | 86.3 | < .01 | 76.9 | 0.19 | < .01 |
| Collaboration and communication among health care staff | 440 | 88.9 | 436 | 88.1 | .68 | 81.4 | 0.09 | .05 |
| Nurse's sincere interest and empathy | 451 | 91.1 | 443 | 89.5 | .38 | 83.4 | 0.05 | .22 |
| Nurse's explanation about treatment | 452 | 91.3 | 438 | 88.5 | .12 | 83.8 | 0.11 | .01 |
| Nurse's prompt attending to discomfort and pain | 450 | 90.9 | 433 | 87.5 | .07 | 81.6 | 0.05 | .26 |
| Domain score | 2.21 | 0.81 | 1.88 | 0.79 | < .01 | 0.14 | < .01 | |
| Domain 4: Physical symptoms (3 items) | ||||||||
| Pain | 347 | 70.1 | 352 | 71.1 | .71 | 64.7 | 0.15 | < .01 |
| Lack of energy and fatigue | 401 | 81.0 | 408 | 82.4 | .55 | 72.3 | 0.07 | .10 |
| Numbness and tingling | 348 | 70.6 | 355 | 71.7 | .71 | 64.1 | 0.13 | < .01 |
| Domain score | 1.69 | 1.01 | 1.38 | 0.92 | < .01 | 0.15 | < .01 | |
| Domain 5: Facilities and Hospital Services (4 items) | ||||||||
| Short waiting period for an appointment | 439 | 88.7 | 441 | 89.1 | .83 | 82.2 | 0.1 | .03 |
| Pleasant treatment environment | 437 | 88.3 | 443 | 89.5 | .53 | 81.8 | 0.08 | .08 |
| Rehabilitation medical services | 370 | 74.9 | 399 | 80.6 | .02 | 68.8 | 0.1 | .02 |
| Comprehensive counseling and guidance by a designated medical staff | 418 | 84.8 | 423 | 85.5 | .71 | 76.9 | 0.08 | .06 |
| Domain score | 2.08 | 0.83 | 1.80 | 0.86 | < .01 | 0.21 | < .01 | |
*By McNemar test.
†Simple κ for items; Spearman's ρ for domains.
|
| Characteristic | Overall | Information | Psychological Problems | Health Care Staff | Physical Symptoms | Facilities and Services | ||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|
| OR | 95% CI | OR | 95% CI | OR | 95% CI | OR | 95% CI | OR | 95% CI | OR | 95% CI | |
| Patient | ||||||||||||
| Age (by year) | 1.07 | 0.60 to 1.91 | 0.82 | 0.47 to 1.40 | 1.16 | 0.68 to 2.00 | 1.15 | 0.68 to 1.94 | 1.56 | 0.88 to 2.77 | 0.91 | 0.51 to 1.62 |
| Male sex | 1.09 | 0.58 to 2.04 | 1.50 | 0.83 to 2.68 | 1.03 | 0.58 to 1.83 | 0.54 | 0.31 to 0.93 | 1.31 | 0.71 to 2.41 | 0.91 | 0.49 to 1.68 |
| Employment | 0.88 | 0.53 to 1.45 | 1.19 | 0.75 to 1.89 | 0.98 | 0.62 to 1.57 | 1.28 | 0.82 to 2.01 | 0.88 | 0.53 to 1.44 | 1.21 | 0.74 to 1.97 |
| Higher education (≥ high school) | 1.01 | 0.59 to 1.72 | 0.89 | 0.54 to 1.46 | 0.96 | 0.58 to 1.58 | 0.97 | 0.60 to 1.57 | 1.06 | 0.63 to 1.80 | 1.08 | 0.64 to 1.82 |
| Married (v unmarried) | 1.70 | 0.90 to 3.21 | 0.89 | 0.50 to 1.58 | 1.17 | 0.66 to 2.09 | 1.37 | 0.79 to 2.39 | 0.71 | 0.39 to 1.30 | 1.04 | 0.56 to 1.91 |
| Higher income (≥ 200 million KRW) | 0.97 | 0.56 to 1.70 | 1.32 | 0.79 to 2.22 | 1.49 | 0.89 to 2.50 | 1.43 | 0.87 to 2.37 | 1.42 | 0.82 to 2.46 | 0.85 | 0.49 to 1.48 |
| Cancer type (reference: stomach cancer) | ||||||||||||
| Lung | 0.59 | 0.16 to 2.20 | 0.67 | 0.21 to 2.08 | 1.27 | 0.44 to 3.65 | 1.16 | 0.41 to 3.29 | 0.91 | 0.28 to 2.90 | 0.35 | 0.10 to 1.30 |
| Liver | 0.97 | 0.27 to 3.56 | 0.88 | 0.28 to 2.71 | 1.31 | 0.46 to 3.76 | 0.78 | 0.27 to 2.26 | 0.97 | 0.31 to 3.01 | 0.77 | 0.23 to 2.61 |
| Colon/rectum | 0.69 | 0.23 to 2.01 | 0.91 | 0.36 to 2.29 | 0.66 | 0.27 to 1.63 | 1.06 | 0.45 to 2.53 | 0.72 | 0.27 to 1.92 | 0.44 | 0.16 to 1.22 |
| Breast | 0.85 | 0.24 to 2.94 | 1.68 | 0.58 to 4.83 | 0.70 | 0.25 to 1.94 | 0.73 | 0.27 to 1.98 | 1.76 | 0.59 to 5.28 | 0.72 | 0.22 to 2.32 |
| Cervix | 1.12 | 0.29 to 4.41 | 2.83 | 0.85 to 9.43 | 2.12 | 0.70 to 6.48 | 0.39 | 0.12 to 1.23 | 1.20 | 0.35 to 4.10 | 0.95 | 0.26 to 3.54 |
| Other | 1.03 | 0.37 to 2.87 | 0.93 | 0.38 to 2.29 | 0.79 | 0.34 to 1.84 | 0.83 | 0.36 to 1.93 | 1.46 | 0.59 to 3.62 | 0.66 | 0.25 to 1.74 |
| SEER stage (reference: in situ and local) | ||||||||||||
| Regional | 0.70 | 0.41 to 1.21 | 0.86 | 0.52 to 1.41 | 0.70 | 0.42 to 1.15 | 0.87 | 0.54 to 1.42 | 0.73 | 0.43 to 1.23 | 0.74 | 0.43 to 1.26 |
| Distant | 1.06 | 0.46 to 2.45 | 0.97 | 0.46 to 2.07 | 1.35 | 0.65 to 2.78 | 0.85 | 0.42 to 1.75 | 0.64 | 0.29 to 1.41 | 0.43 | 0.19 to 0.99 |
| Having comorbidities | 0.80 | 0.49 to 1.32 | 0.78 | 0.50 to 1.24 | 0.81 | 0.51 to 1.29 | 1.08 | 0.70 to 1.68 | 0.77 | 0.47 to 1.25 | 1.06 | 0.65 to 1.73 |
| Having any impairment | 1.08 | 0.60 to 1.95 | 1.28 | 0.75 to 2.21 | 1.68 | 0.98 to 2.86 | 1.45 | 0.86 to 2.45 | 1.23 | 0.70 to 2.17 | 1.22 | 0.68 to 2.18 |
| Having pain (average pain ≥ 4) | 0.90 | 0.48 to 1.67 | 1.73 | 0.98 to 3.06 | 1.16 | 0.66 to 2.04 | 0.78 | 0.44 to 1.36 | 1.11 | 0.61 to 2.04 | 0.93 | 0.51 to 1.73 |
| Having anxiety (HADS-A score ≥ 11) | 0.50 | 0.20 to 1.26 | 0.60 | 0.26 to 1.40 | 0.84 | 0.36 to 1.94 | 0.53 | 0.24 to 1.20 | 0.71 | 0.29 to 1.73 | 0.40 | 0.16 to 1.02 |
| Having depression (HADS-D score ≥ 11) | 1.39 | 0.78 to 2.47 | 1.24 | 0.73 to 2.12 | 1.06 | 0.62 to 1.81 | 1.35 | 0.81 to 2.27 | 1.19 | 0.68 to 2.08 | 1.04 | 0.59 to 1.82 |
| Time since diagnosis ≥ 24 months | 0.95 | 0.58 to 1.56 | 0.95 | 0.61 to 1.5 | 1.02 | 0.65 to 1.60 | 1.34 | 0.86 to 2.07 | 0.92 | 0.57 to 1.49 | 1.03 | 0.64 to 1.67 |
| Physician | ||||||||||||
| Specialty (reference: surgical oncologists) | ||||||||||||
| Medical oncologists | 1.69 | 0.69 to 4.12 | 1.21 | 0.58 to 2.52 | 1.17 | 0.59 to 2.33 | 1.27 | 0.65 to 2.49 | 0.91 | 0.44 to 1.88 | 1.04 | 0.46 to 2.38 |
| Radiologic oncologists | 0.43 | 0.08 to 2.22 | 0.46 | 0.12 to 1.73 | 0.77 | 0.23 to 2.63 | 0.40 | 0.11 to 1.45 | 0.48 | 0.13 to 1.81 | 0.34 | 0.07 to 1.74 |
| ≥ 10 years of oncology experience | 2.09 | 1.02 to 4.31 | 1.59 | 0.89 to 2.84 | 1.03 | 0.61 to 1.76 | 1.39 | 0.82 to 2.35 | 1.55 | 0.87 to 2.76 | 0.97 | 0.50 to 1.89 |
NOTE. Adjusted odds ratios were obtained from mixed logistic regression models adjusted for all other variables in the table. Entries in bold represent statistically significant adjusted odds ratios.
Abbreviations: HADS-A, Hospital Anxiety and Depression Scale–Anxiety; HADS-D, Hospital Anxiety and Depression Scale–Depression; KRW, Korean Won; OR, odds ratio; SEER, Surveillance, Epidemiology, and End Results.
