Projects

1.A randomized controlled trial to validate the effectiveness of an integrated support program for the facilitation of empathic communication among patients with rapidly progressive cancer, their families, and physicians(link to an external site)

Rapidly progressive cancers such as pancreatic cancer are often incurable already when patients are informed of having cancer and cause a great deal of stress to patients and their caregivers. Globally, under such circumstances, it is a difficult task to clarify and share with oncologists the care individual patients would wish to receive after the standard treatment is completed and realize care in line with patients’ preferences. Previous studies have shown that patients and their caregivers expect empathic communications with oncologists and that empathic communications (verbal and behavioral) with oncologists have positive effects on patients’ stress.

In a previous study, we have developed Communication Skills Training for physicians, which comprises lectures using DVDs and role-plays, including feedback, and confirmed the effectiveness of the training program in increasing empathic communications and reducing patients’ stress levels through a randomized controlled trial; however, the program had a drawback that physicians had to devote a lot of time for training (2 days), which is too long for physicians. Meanwhile, to encourage patients to ask questions to oncologists, we have developed a brochure listing example questions to oncologists (Question Prompt List: QPL) and verified its usefulness through a randomized controlled trial. However, patients asked fewer questions to physicians than in the West. The findings of the trial suggest the necessity of more intense intervention.

Therefore, we developed a communication training program for oncologists and a communication support program for patients/caregivers and conducted a randomized controlled trial to validate their effectiveness in facilitating empathic communication between patients/caregivers and oncologists. The planned number of enrolled patients was 300; the planned number of enrolled family caregivers was 240; and the planned number of enrolled oncologists was 20. Participants in the intervention group underwent the developed program. Participants in the control group received usual care. Conversations during the post-intervention consultation between oncologists, patients and caregivers were audio-recorded, and were assessed on their empathic communication and information sharing performance as primary outcome. Secondary outcomes included the patient psychological distress (HADS), QOL (CoQOLo), satisfaction with communication (CSQ) and trust in oncologist (TiOS) were assessed baseline and after the consultation. The enrollment was completed in September 2020, and the follow-up survey is currently ongoing.

2.Mobile-based Empathic Communication Support Program to Promote Advance Care Planning Discussion in Advanced Cancer Patients(link to an external site)

Patients with advanced cancer find it difficult to have discussions with oncologists about their own goals and the treatment and care they want to receive in clinical settings, especially how to spend their end-of-life phase. Previous studies report that patients are more likely to receive medical care in line with patients’ goals when the time comes, if those patients think about themselves regarding what they value, what treatments they want to receive, and how they want to spend the last days or patients start having discussions early with whom they trust such as family members and medical professionals on a continuous basis.

In this study, we made an application (app) to help patients and their families clarify the questions they want to ask their oncologists, what is important to them, what treatments patients want to receive when the time comes, and how patients want to spend the last days from early stage of cancer treatment, and to help them initiate discussions with their oncologists. This app can be used anytime and anywhere on mobile devices such as smartphones and tablet computers.

This study examines whether a mobile-based empathic communication support program, which intends to promote discussions between patients and their oncologists, improves the empathic communications during an outpatient visit. If this study demonstrates the facilitation of discussions from early stages of treatment, the app may help patients to receive medical care in accordance with their preferences and spend the last days as they want to.

3.Geriatric assessment and management with Question Prompt List using a web-based applications for elderly cancer patients to communicate age-related concerns (MAPLE)(link to an external site)

Since Japan is a front-runner of the super-aged societies, the number of elderly patients with cancer is increasing. Elderly patients with cancer require appropriate support for concomitant non-cancer problems because they have difficulty in continuing anticancer treatment owing to age-related decline of physical and psychosocial functions. Geriatric assessments (GA) can assess these age-related problems in a multifaceted and comprehensive manner, for which multidisciplinary teams can provide support. We developed a program that combines a GA summary, GA-based management recommendations, and communication support using Question Prompt List (QPL) including age-related questions. It will use a self-reported GA and QPL administered on a web-based application. This study will examine the efficacy of the program to facilitate communications between elderly cancer patients and their oncologists during consultation, and also explore whether facilitated communications will result in proactive management by oncologists, thus improving treatment and patient outcomes.

It is expected that this program reveals physical and psychosocial issues that have been overlooked in daily oncology practice and facilitates patient–doctor communications about age-related concerns, which results in proactive management mainly through multidisciplinary support. This may lead to reduced treatment toxicity, increased rate of treatment continuation, improved quality of life and physical function, and prolonged survival.

• Communication with adolescent and young adult patients with cancer

4.Development of a communication skills training (CST) program for oncologists working with adolescents and young adults (AYAs) with cancer

The number of AYA with cancer in Japan accounts for 2.5% of all cancer patients, a small number even by global standards, and therefore the situation has not been fully understood or examined. AYAs face issues such as schooling, employment, and fertility that are completely different from those of the over 60s, the most common generation affected by cancer, and medical providers are not prepared to discuss them, do not have time to prepare for discussions and respond to patient reactions. The purposes of this study are to develop a CST program for oncologists working with AYAs (AYA-CST), and to evaluate preliminary feasibility of the AYA-CST program on the subjective ratings of their confidence about the communication with AYAs with cancer at the pre- and post-CST.

Our previous questionnaire survey clarified the communication preferences regarding the disclosure of bad news and supportive care needs among AYAs with cancer in Japan. Currently, the development of AYA-CST and evaluation of its effectiveness are led by the development committee comprising medical and mental healthcare professionals engaged in medical care of AYAs with cancer.

5.Development of information materials promoting explanations of the effects of cancer treatment on reproductive function and fertility preservation

The results of the needs survey of AYAs with cancer have shown that despite the high needs for information on reproductive function and fertility, only a small percentage of patients actually received relevant explanations before cancer treatment. Patients who are going to receive cancer treatment should be provided adequately with information before shared decision-making.

Therefore, in this study, we conduct an interview survey of oncologists, oncology nurses and AYAs with cancer, aiming to identify inhibitory and facilitatory factors of doctors’ implementation of explanation to patients about “effects of treatment on reproductive function and preservation of fertility” before the treatment initiation and develop information materials.

The information materials about reproductive function/fertility for use by doctors and multidisciplinary teams to be developed in this study are expected to facilitate informed decision-making by AYAs with cancer before treatment, improve patients’ QOL, and reduce the burden on doctors.

6.Study on cognitive, physiological, and behavioral reactions after patients are informed of having cancer

Medical professionals have to engage in complex communication to provide “empathy” as emotional support as well as accurate medical information when they tell patients and their families about the truth about progressive and fatal diseases such as cancer and dementia. Patients need empathic communications with doctors (for example, using words accepting patients’ emotions, having sufficient silence periods) during important interviews; however, with the declining birthrate and population aging, medical professionals experience a sense of burden because they cannot afford sufficient time for each patient and realize the insufficiency of their own communication skills.

“Empathy” is a complex speculation of thoughts and feelings of others, integrating observation, memory, knowledge, and inference. Empathy behaviors have previously been studied from the aspects of line of sight, tone of words, distance, and attitude. For each of these aspects, appropriate quality and quantity vary from one setting to another (for example, eye contact is a prosocial behavior, but can be regarded as a hostile behavior in persuasion settings), and no clear behavioral indices have been shown for empathic responses in patient–medical professional communication settings. Therefore, this research project aims to look into the mechanism of interaction underlying empathic communication between cancer screening participants and doctors during face-to-face meetings for cancer notification from the aspects of cognition, physiology, and behavior.

The results of this study are expected to contribute to the development of educational programs to improve empathic communication skills and tools to facilitate communication during interviews as well as alleviation of patients’ anxiety, establishment of relationships of trust between patients and medical professionals, and improvement of patients’ QOL.

J-SUPPORT-supported studies

7.Elucidation of the mechanism underlying effects of doctors’ behavior during interview on a sense of trust of patients with cancer(link to an external site)

8.A randomized controlled trial of the clinical utility of a nurse-led, screening-triggered early specialized palliative care intervention program for patients with advanced cancer(link to an external site)

9.Optimization of smartphone-based psychotherapy for depression/anxiety in patients with cancer: a multiphase optimization strategic study using an innovative test system (smile project)(link to an external site)

 Guidelines

10.Distress guidelines, fear of recurrence guidelines, insomnia guidelines, and communication guidelines

Mental and psychological problems constitute a major group of problems related to cancer, which is the leading cause of death in Japan. The International Psycho-Oncology Society has also recommended that “distress (depression and anxiety)” should be evaluated as the “sixth vital sign.” Recently, fear of recurrence has also been a major problem, and this and insomnia require countermeasures urgently. Communication proficiency of medical professionals is also an important issue. However, no clinical guidelines for the mental and psychological problems mentioned above are available in Japan; this is presumably a reason for the statement “cancer patients receive insufficient assessments for mental and psychological effects and insufficient mental and psychological care” in a progress report (interim report, April 2019) of the "10-year Strategy of Cancer Research."

Therefore, we are developing clinical guidelines for distress (anxiety/depression), fear of recurrence, insomnia, and communication, with the cooperation of the Japan Psycho-Oncology Society and other entities. These guidelines are expected to contribute to measures against mental illness, which is one of the five major diseases, as well as the improvement of cancer medical care quality, and eventually to the improvement of quality of life of the people.

11.Bereaved family support guidelines

Cancer is the most serious health problem affecting approximately one million people annually. In terms of “families,” millions of people support patients physically and mentally, and after patients die, they experience distress owing to bereavement as bereaved families. As families and bereaved families of patients with cancer bear a heavy burden, they are sometimes referred to as “second patients” to emphasize that they need appropriate support. In Europe and the United States, family/bereavement care has been promoted actively, given the fact that the families commonly experience mental and psychological distress and bereavement is a major risk for depression and suicide.

Meanwhile, because healthcare systems and culture have large effects on ways of care for patients’ families and bereaved families, strategies in Japan should be designed to suit characteristics of the nation in these aspects. In Japan, patients’ families and bereaved families are rarely provided with appropriate mental and psychological care except for certain peer support, and there are only a limited number of accurate reports on families of patients with cancer and bereaved families requiring proactive care.

For facilitating further improvements of cancer medical care, we are developing bereaved family support guidelines to clarify effective methods of mental and psychological support for patients with cancer and their families. These are expected to contribute to overall improvement in the quality of medical care in Japan to reduce mental and psychological burden on families of patients with cancer and bereaved families.

Fact-finding surveys

12.A descriptive epidemiological study of suicide by patients with cancer using the national cancer registry(link to an external site)

In Japan, approximately one million people are newly diagnosed with cancer annually, and one in two people reportedly contract cancer in their lifetime. Although the 5-year survival rate of cancer has improved to approximately 60%, support for those living with cancer remains an important part of cancer control. Among the issues related to those living with cancer, the necessity of suicide prevention measures has been explicitly stated in “the third phase of the National Cancer Control Plan” and “the General Principles of Suicide Prevention Policy - Realizing a Society in Which No One Is Driven to Take Their Own Life,” because studies in Japan and other countries have reported that patients with cancer are at an elevated risk for suicide.

The national cancer registry system, which was launched in 2016, has made it possible for the first time to know the facts about suicide by patients with cancer in Japan. An analysis of the registry data revealed that the risk of dying from suicide within 6 months after being diagnosed with cancer in patients who were diagnosed with cancer in the six-month period from January 1, 2016 was 2.68 times higher than that in the general population. As the follow-up duration in this survey was limited to 6 months, the survey using the national cancer registry should be continued to examine details further.

13.A study on mental distress and QOL in patients with cancer undergoing gene panel testing

Oncogene panel testing using a next-generation sequencer has been added to the national health insurance coverage in Japan on May 29, 2019. Eligible patients are patients with solid tumors for which no standard treatment is available and patients with locally advanced or metastatic solid tumors who completed standard treatment. Although there are no reports on psychological effects of gene panel testing in Japan, a previous survey of people undergoing gene panel testing for familial and hereditary tumors in a different country has revealed a high level of distress among those found to have a moderate level of mutations, while no clear psychological effects were seen overall. However, the subjects in this previous survey were people undergoing gene panel testing for familial and hereditary tumors, and no previous studies in people undergoing oncogene panel testing, which is the subject of our study, have been reported in the world. Psychological effects on accompanying persons such as family members, in addition to patients, can be considered but have not been studied.

Therefore, we are exploring for factors associated with psychological effects of oncogene panel testing and results thereof on patients and accompanying persons. Psychological stress from undergoing oncogene panel testing and its effects on the quality of life to be confirmed through this study are expected to contribute to the development of new support and guidelines.

Implementation science

14.Development of methods to encourage participation in cancer screening for patients with psychiatric disorders to improve their low participation rates and establishment of a mechanism to identify obstacles and facilitate cooperation for improving access to standard cancer treatment and care(link to an external site)

Information for former Division of Health Care Research

• Studies on health behaviors that contribute to improvement of the QOL of cancer survivors
• Studies on prevention of suicide by patients with cancer