Association between Information Provision and ...

Annals of Oncology Advance Access published June 26, 2015 1

Association between Information Provision and Decisional Conflict in Cancer Patients J. A. Sim1, J. S. Shin1, S. M. Park1, Y. J. Chang2, A. Shin4, D. Y. Noh3,5, W. Han3,5, H. K. Yang3,5, H. J. Lee3,5, Y. W. Kim6, Y. T. Kim3,7, S. Y. Jeong3,5, J. H. Yoon6,8, Y. J. Kim6,8, D. S. Heo3,6, T. Y. Kim3,6, D. Y. Oh3, H. G. Wu3,9, H. J. Kim9, E. K. Chie9, K. W. Kang 1,3,10, Y. H. Yun1,3 1

Department of Biomedical Science, Seoul National University College of Medicine,

2

Research Institute and Hospital, National Cancer Center, Goyang-si, Korea

3

Cancer Research Institute, Seoul National University College of Medicine, Seoul,

Korea 4

Department of Preventive Medicine, Seoul National University College of Medicine,

Seoul, Korea 5

Department of Surgery, Seoul National University College of Medicine, Seoul, Korea

6

Department of Internal Medicine, Seoul National University College of Medicine,

Seoul, Korea 7

Department of Thoracic and Cardiovascular Surgery, Seoul National University

Hospital, Seoul National University College of Medicine, Seoul, Korea 8

Liver Research Institute, Seoul National University College of Medicine, Seoul,

Korea 9

Department of Radiation Oncology, Seoul National University College of Medicine,

Seoul, Korea 10

Department of Nuclear Medicine, Seoul National University College of Medicine,

Seoul, Korea

Corresponding author: Dr. Young Ho Yun, Department of Biomedical Science, Seoul National University College of Medicine, 103 Daehak-ro, Jongno-gu, Seoul 110-799, Korea, Tel: +82-2-740-8417; Fax: +82-2-742-5947; E-mail address: [email protected]

© The Author 2015. Published by Oxford University Press on behalf of the European Society for Medical Oncology. All rights reserved. For permissions, please email: [email protected].

Downloaded from http://annonc.oxfordjournals.org/ at Seoul National University on June 29, 2015

Seoul, Korea

2

ABSTRACT BACKGROUND In this study, we aimed to identify demographic and clinical variables that correlate with perceived information provision among cancer patients and determine the association of information provision with decisional conflict. PATIENTS AND METHODS

2012. We used the European Organization for Research and Treatment of Cancer (EORTC) quality of life questionnaire (QLQ-INFO26) to assess patients’ perception of the information received from their doctors and the Decisional Conflict Scale (DCS) to assess decisional conflict. To identify predictive socio-demographic and clinical variables for adequate information provision, backward selective logistic regression analyses were conducted. In addition, adjusted multivariate logistic regression analyses were performed to identify clinically-meaningful differences of perceived level of information subscales associated with high decisional conflict. RESULTS More than half of patients with cancer showed insufficient satisfaction with medical information about disease (56%), treatment (73%), other services (83%), and global score (80%). In multiple logistic regression analyses, lower income and education, female, unmarried status, type of cancer with good prognosis, and early stage of treatment process were associated with patients’ perception of inadequate information provision. In addition, Information about the medical tests with High DCS values clarity (adjusted odds ratio [aOR], 0.54; 95% CI, 0.30-0.97), support (aOR, 0.53; 95% CI, 0.33-0.85) showed negative significance. For inadequate information


We enrolled a total of 625 patients with cancer from two Korean hospitals in

3

perception about treatments and other services, all 5 DCS scales (uncertainty, informed, values clarity, support and effective decision) were negatively related. Global score of inadequate information provision also showed negative association with high DCS effective decision (aOR, 0.43; 95% CI, 0.26-0.71) and DCS uncertainty (aOR, 0.46; 95% CI, 0.27-0.77).

CONCLUSION

with several demographic and clinical characteristics. In addition, sufficient perceived information levels may be related to low levels of decisional conflict. Keywords: Cancer, Information, Decisional conflict, Quality of care Key Message This article describes the probability of perceived inadequate information provision among Korean cancer patients and the clinical and demographic variables associated with patients’ perception of inadequate information. Perceived inadequate information provision correlates with high decisional conflict, suggesting that improving perceived information level may improve the treatment decision-making process.


This study found that inadequate levels of perceived information correlated

4

INTRODUCTION The Korea Central Cancer Registry reports that there are nearly 1.1 million cancer survivors in Korea [1, 2]. Due to substantial advances in cancer-related technologies, it is expected that more patients may be declared cancer-free [2]. As this number increases, improving quality of care for patients is a primary concern of hospitals and the government [2-4]. Indeed, high quality of care involves medically-

to an effective shared decision-making process and improved medical care and outcomes [6]. According to the Ottawa Decision Support Framework, decisional conflict is defined as a state of uncertainty about which treatment option to choose to reduce the risks of mental and physical complications, and avoid regret during decisionmaking process [7]. Decisional conflict (DC) is common among patients with cancer in the decision-making process [8, 9], appropriate level of information provision might reduce DC. In addition, previous studies have shown that adequate information is associated with patient satisfaction with treatment, sense of control, high quality of life, low level of emotional distress, and shared decision-making [10, 11]. Thus, identification of clinically meaningful perceived level of information provision factors, such as information about treatment or medical services contributing to decisional conflict may help improve patient quality of care. Generally, cancer patient’s need for basic information on diagnosis, treatment options, and common side effects of treatment was high [12]. However, few studies


appropriate treatment as well as health information accessibility [5], which can lead

5

conducted with western populations have evaluated the content, type, and amount of information received by patients, and these articles did not report outcomes associated with inadequate information provision [13, 14]. To the best of our knowledge, several studies have reported information-seeking behavior in other Asian countries [15]; however, the use of medical services in Korea is unique Healthcare system in Korea is characterized by domination of private sectors which

patients[16], while still showing the traditional direct Patient-Doctor relationship - and it requires studies that consider the characteristics of Korean patients. Because adequate information may decrease decisional conflict, we investigated the role of information provision in the treatment decision-making process. Therefore, this study aimed to identify predictable demographic and clinical factors associated with the perception of inadequate information provision, and to evaluate the clinically meaningful associations between perceived inadequate information provision and high decisional conflict.

PATIENTS AND METHODS

Participants

In 2012, we identified 766 patients from a sample of patients at outpatient clinics of the Seoul National University Cancer Hospital and National Cancer Center (NCC). For inclusion in the study, patients had to 1) be at least 18 years old, 2) be diagnosed with cancer, 3) know their cancer status, and 4) be able to understand the


led Korea to exhibit clinicians’ 'induced demand' and 'doctor shopping' by

6

purpose of the study. In particular, to evaluate different medical experiences and needs along the cancer care continuum, our research staff asked patients with cancer about their treatment stages: as follows: 1) if they had just been diagnosed with cancer and were waiting for treatment, 2) were currently being treated for cancer, 3) were undergoing follow-up treatment, or 4) were declared cancer-free. Patients who felt uncomfortable due to their pending operation, first hospital visit, or poor

were unable to complete the questionnaires without help were also excluded. This study was approved by the institutional review boards of the two hospitals.

Procedures and measures

To assess perceived provision of information, we used the Korean version of the European Organization for Research and Treatment of Cancer (EORTC) quality of life questionnaire (QLQ-INFO26). This validated questionnaire consists of 12 subscales including 4 multi-item scales and 8 single-item scale devised to evaluate the cancer patients’ perception of information [17]. For ease and clearness of interpretation, all scale and item scores were linearly transformed to yield score from 0 to 100 scales [17] with the international standard scoring manual [18]. Higher scores mean a higher level of information received, higher information wishes, and higher satisfaction [19]. According to the EORTC scoring manual, it might be useful to dichotomize transformed scores by grouping scores into two groups. It may be clinically relevant to know the proportion of cancer patients, who responded scales of “quite a bit” or “very much” corresponding to over 66 through highest. Therefore, in


eyesight were excluded. Individuals who did not provide consent for participation or

7

this study, we defined scores ≤66 as indicators of “perceived inadequate information provision” whereas scores >66 indicated “perceived adequate information provision.” To assess decisional conflict, we used the Korean version of Decisional Conflict Scale (DCS), which received permission for language translation from Ottawa Decision Support Team and was already used in prior Korean study [20]. The validated DCS consists of 16 items comprising five subscales (uncertainty regarding

options, clarity of values, support received during decision making, and perceived effectiveness of the decision-making process)[21]. We scored the DCS according to DCS scoring manual, and the data were transformed linearly to yield scores from 0 to 100. We dichotomized each subscale and the total score; scores High school graduation 185(29.6) 2.44((1.31-4.56) 1.48(1.02-2.15) c Currently married No 277(44.3) 1 1 Yes 348(55.7) NS 0.65(0.41-1.04) d Monthly Income(USD) < 2,000 211(33.8) 1 1 1 ≥ 2,000 406(55.0) 1.35(0.97-1.88) d 1.48(1.03-2.11) 1.64(1.04-2.60) c Religion No 93(14.9) 1 Yes 524(83.8) 1.58(1.01-2.48) c Cancer Type Good Prognosisb 407(65.1) Poor prognosis 131(21.0) Treatment Process Diagnosis 358(57.3) 1 1 ~Treatment(in progress) Treatment(completed) 252(40.3) 1.50(1.06-2.11) c 1.81(1.22-2.68) c ~Remission Abbreviations: aOR, adjusted odds ratio; CI, confidence interval; NS, not significant; USD, US dollar. Socio-demographic and clinical variables that were not significantly correlated with each scales of EORTC QLQ-INFO 26 in the univariate cross-tabulations are presented as '-‘, these variables were not included in the model. Socio-demographic and clinical variables were dichotomized with meaningful criteria. a 12 multiple logistic regression models were run for each scales of EORTC QLQ-INFO26 (the models without statistically significant predictors for each scales were not shown). These models. Proportion of scores ≤66 as indicators of “perceived inadequate information provision”. included variables which were identified as statistically significant (p