Points of View Living with Disease in Cancer Survivors

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The Office of Pharmaceutical Industry Research Minoru Ito, Supervisory Researcher

1. Introduction

OPIR Views and Actions In the previous issue (No.61), the author reviewed the current status of next-generation health care from the perspective of expanding the scope of health care services. It is indisputable that "prevention" and "diagnosis and treatment" are important for extending healthy life expectancy, but it is equally desirable for people to live as free from disease as possible, in other words, to live in harmony with disease. However, it has been observed that efforts to address this issue have tended to lag behind "prevention" and "diagnosis and treatment ^.) 1) Therefore, the purpose of this study was to review the situation of cancer survivors, who are relatively ahead of others in "symbiosis" efforts, and to examine the contribution of pharmaceutical companies in "symbiosis" with cancer.

2. What is a cancer survivor?

The term "cancer survivor" is often interpreted as a person who has overcome cancer due to the word "survivor," but it is now defined as "a person who is not only cured of cancer but also in all stages of cancer from the time of diagnosis to death ^.) In other words, a cancer survivor is more accurately described as a "cancer experiencer" than as a "survivor ^.) Cancer survivorship means "to live with cancer in one's own way from the time of diagnosis to the end of life ^"2).

Due to the development of cancer treatment and the efforts of medical professionals, the survival rate and the number of cancer survivors have been increasing since the late 1990s. （According to the All-Cancer Association Joint Survival ^Study4), the relative 5-year survival rate is approaching 70%, and cancer is now considered a chronic disease rather than an incurable ^disease3).

According to the National Cancer Center's future ^projection5), the number of cancer cases is expected to increase consistently from 2015 to 2039 (Figure 2 ⁾. (Figure 2)

In addition, according to the National Cancer ^Registry6) in 2009, the proportion of the number of patients in the working age group of 20-69 years was 40.6%, and it is expected that the number of patients who are able to work is not small. (Figure 3)

Problems faced by cancer survivors

Living with cancer is a painful experience, although it varies from person to person. The distress experienced by cancer survivors is called holistic distress, which can be classified into four categories as shown in Figure 4 ^.2).

The mental, physical, social, and spiritual aspects of cancer survivors affect each other, and it is necessary to understand the four types of distress comprehensively rather than focusing on individual distress.

In a public opinion ^poll7) (Figure 5) on cancer control conducted by the Government Public Relations Office of the Cabinet Office in November 2008, the respondents expressed their requests to the government. In addition to the establishment of medical facilities and early detection, the survey included requests for various holistic distress responses such as employment support, counseling support, and palliative care.

Cancer survivors go through four phases from the time of cancer diagnosis to the time of ^{death2) (} Figure 6). (Fig. 6) During each of these periods, the distress that is expressed changes, and support that takes into account the time period is required.

Support for cancer survivors

The Basic Plan for the Promotion of Cancer Control (Phase 3) approved by the Cabinet on March 9, 2008 states that "in order for cancer patients to live with cancer, it is important for the patients themselves to live with cancer and for the patients and society to cooperate and work together " ⁸⁾. More specifically, the following five initiatives for coexistence with cancer are addressed: (1) promotion of palliative care, (2) consultation and information support, (3) measures to address social issues including employment, (4) cancer control measures and cancer patient support based on social cooperation, and (5) cancer control measures according to life ^stages9). (Figure 7)

4-1. Promotion of palliative care

The response to cancer survivors' holistic suffering, including physical, mental, and social distress, is collectively called "palliative care. Article 17 of the Basic Act on Cancer Control stipulates that "palliative care should be provided appropriately from the time of diagnosis" as a necessary measure to maintain and improve the quality of life of cancer patients.

The center of palliative care provision is the base hospital for cancer treatment (hereinafter referred to as "base hospital"). As of April 2020, 402 hospitals had been designated as ^such10).

Prefectural base hospitals have palliative care centers and regional base hospitals have palliative care teams to promote palliative care from the time cancer is diagnosed. However, it has been pointed out that there is a disparity in the quality of palliative care among facilities, and efforts are being made to understand the actual status of palliative care and patient needs through on-site surveys, etc., and to improve the provision system through palliative care training ^sessions8).

4-2. Consultation support and provision of information

Amid the flood of cancer-related information on the Internet, etc., there is a need to create an environment in which cancer survivors and their families can consult with each other about their physical, mental, and social concerns and access necessary information. In the "Survey on Attitudes Toward Cancer" (September 2018) organized by the National Cancer Center's Cancer Control and Information Center and others, after information on treatment, there was a scattering of unmet social needs, such as information on financial aspects and ^{employment11)} (Figure 8.)

Base hospitals play a central role in providing consultation support and information. The requirements for designation as a base hospital stipulate the establishment of a "Cancer Consultation Support Center" ¹²⁾. 12) The center also provides consultation services to patients and medical institutions in other hospitals. In addition, consultation support networks are being established across secondary medical regions and prefectures. On the other hand, ^{according to the} report on patient experience published by the National Cancer Center's Cancer Control and Information Center in 2020 (FY2020 survey) ^{13) , the} recognition rate of cancer consultation support centers was 66.4%, but the utilization rate was only 14.4%, indicating that cancer survivors who need consultation support do not fully use these centers. It is pointed out that cancer survivors who need consultation support do not fully utilize the service. It is desirable to promote the use of this service from the early stage of treatment. In addition, the content of consultations has been diversifying in recent years, and the need for further training has been pointed ^out12).

4-3. Measures for social issues including employment

Creating a society in which cancer survivors can continue to work while feeling a sense of fulfillment in life is indispensable for living with cancer. According to a special tabulation based on the "2016 National Survey of Living Conditions of People with Cancer" conducted by the Ministry of Health, Labour and Welfare, the number of people with malignant neoplasms attending hospital while holding a job was 365,000, an increase of approximately 40,000 compared to the same survey in ^201014). (Figure 9)

Considering the aforementioned national estimates of future cancer incidence (Figure 2) and age-specific cancer incidence rates (in 2009) (Figure 3), the number of cancer survivors in the workable age group is expected to continue to increase. However, the aforementioned Patient Experience Survey Report (FY 2008 survey) indicates that 19.8% of those who were working at an income-earning job at the time of cancer diagnosis retired or closed their jobs, and 54.2% took a leave or leave of ^absence13) (Figure 10)

In addition, the "Public Opinion Survey on Cancer Control and Tobacco Control, " ¹⁵⁾ (Figure 11) released by the Government Public Relations Office, Cabinet Office in September 2048, showed an improvement from the previous survey (November 2008) when asked, "If you have to go to the hospital once every two weeks, do you think it is an environment where you can continue working? Although there has been an improvement since the previous survey (November, 2016), approximately 60% of the respondents still answered negatively (Figure 11), and further enhancement of the system to support cancer survivors in balancing treatment and work is required.

As for specific efforts, there is a particular need to improve employment support for cancer survivors to prevent them from leaving their jobs and to help them re-enter the workforce. For this purpose, it is necessary to establish (1) an environment where it is easy to balance treatment and work, (2) an environment where consultation is available from the time of cancer diagnosis at base hospitals, etc., and (3) an environment where professional consultation on re-employment is available even after job ^separation8), 14.

(1) The creation and dissemination of guidelines and manuals to support balancing work and medical treatment at the workplace and the use of subsidies to support balancing work and medical treatment are examples of ways to create an environment in which it is easy to balance work and medical treatment. In addition, there are calls for the establishment of a triangle-type support system between the primary physician and the company through the training and assignment of work-life balance support ^{coordinators14)}.

(2) The establishment of an environment in which consultation can be provided from the time of cancer diagnosis at base hospitals, etc. includes support by the support coordinators of the Cancer Consultation Support Center and the use of a plan for balancing treatment and work (useful notebook). (3) For the provision of an environment in which people can consult professionally about reemployment after leaving their jobs, support by specialized counselors (employment support navigators) at Hello Work is being ^{considered14)}.

Since multiple parties are involved in employment support, including the attending physician, companies, cancer consultation support centers at base hospitals, etc., and public employment security offices, it is necessary to promote collaboration among these stakeholders.

*For social issues other than employment

Social issues other than employment include "prejudice" against cancer, changes in appearance (appearance) associated with cancer treatment, preservation of reproductive functions in the early stage of treatment, and ^suicide8).

⁸⁾ To address "prejudice" against cancer, it is desirable to create opportunities to disseminate correct knowledge about cancer that will lead to public awareness, with the cooperation of private organizations and patient ^groups8).

It has been pointed out that changes in appearance (appearance) account for 60% of the top 20 most distressing symptoms among women with breast cancer and are more distressing than side effect ^symptoms16). With regard to preservation of reproductive functions, studies are being conducted mainly on how to provide consultation support and information to enable patients to make treatment choices at the appropriate time.

Regarding the issue of suicide, a survey on the actual status of suicide among cancer survivors is being conducted, and efforts are underway to study effective interventions. In addition, the need for a suicide prevention safety net centered on cancer counseling and support centers has been pointed ^out8).

4-4. Measures against cancer and support for cancer patients based on social cooperation

In order to realize a society in which cancer survivors can live with peace of mind and dignity in their own way anytime and anywhere, it is necessary to strengthen social cooperation in cancer control and actively practice support for cancer survivors and their families.

Although the need for home palliative care is expected to increase in the future, partly due to the impact of the new type of coronavirus infection, it has been pointed out that there is insufficient coordination between base hospitals, etc. and medical institutions providing home care, pharmacies, visiting nurse stations, etc. It is also pointed out that there are regional disparities in efforts to provide consultation support through cooperation between base hospitals and local medical ^{institutions8)}.

In response to this situation, the Regional Palliative Care Network Development Project has been studying a system in which family doctors are involved from the early stage, collaboration with home medical care, and patient follow-up, in order to provide seamless medical care and improve the quality of that ^care17). In addition, promotion of multidisciplinary cooperation is necessary to promote collaboration among base hospitals and local stakeholders, and efforts are underway to review the role of personnel in charge of inter-institutional coordination and the "Community Critical Path.

Regarding cancer-related consultation for cancer survivors and their families, the Regional Consultation Support Center (Figure 13) is being established to support a one-stop consultation system for various fields, including psychology, medical care, and daily life and nursing ^care18).

At the same time, the need for ongoing efforts to train and disseminate peer support has been pointed out. Peer support means that cancer survivors and their families share their experiences as peers and support other patients and their families. Support by peer supporters and patients' associations that have experienced cancer and overcome various situations is considered important, and the requirements for designation as a base hospital include "support for patient activities such as support group activities jointly run by medical personnel and patients' associations and regular holding of patient salons" ⁽¹²⁾.

In addition, in the "Survey on the Actual Conditions of Consultation Support for Cancer Patients by Private Organizations," published in March ^202019), 349 organizations were reported by prefectures as survey targets, indicating that many organizations are active. The survey indicated that counseling services outside of hospitals are necessary as an option for cancer survivors to lead their lives with peace of mind while receiving treatment and care, and that cooperation between private organizations and hospitals and other related institutions is increasingly needed.

4-5. Cancer control measures according to life stages

Cancer causes different physical, mental, and social problems in each stage of life, and therefore, cancer control measures should be tailored to each stage of life in the pediatric/AYA generation (adolescents and young adults) and in the elderly.

In some cases, children and AYAs continue their studies while suffering physical and emotional pain caused by treatment. However, the support system is not always sufficient, especially in the stage of high school education, where efforts are lagging behind. Therefore, there is a need to further improve the educational environment, including educational support during hospitalization and recuperation, and the development of acceptance systems at schools and in the community after discharge from ^{hospital8) ,} so that child and AYA generation cancer survivors can continue their studies while undergoing treatment.

Another problem unique to children and AYAs is the issue of late complications. Late complications are those that occur as a result of growth and the passage of time, due to the effects of the cancer itself, drug therapy, radiation therapy, etc., and include abnormalities in growth and development, central nervous system abnormalities, organ abnormalities, and secondary cancers. Symptoms may occur decades after treatment has ^ended20). In providing employment support, it has been pointed out that it is necessary to strengthen cooperation not only among medical professionals but also with employment support organizations including Hello Work and patient ^groups8), based on the fact that the needs and issues of the pediatric and AYA generation are different from those of adults.

In elderly cancer survivors, dementia may be diagnosed upon hospitalization or the symptoms of pre-existing dementia may worsen. Certain standards are considered necessary for decision-making in cancer care, but currently no such standards have been established. In the future, medical institutions and nursing care facilities should cooperate and consider measures to support the treatment life of elderly cancer survivors and their families in a way that is in line with their wishes. It is also necessary to formulate and disseminate medical practice guidelines regarding decision support for elderly cancer ^survivors8).

5. Consideration of the contribution of pharmaceutical companies in "living with cancer

Having reviewed the situation of cancer survivors, we would like to discuss the contribution of pharmaceutical companies, with emphasis on the "living with cancer" stage.

According to a survey on worries and burdens of cancer survivors (Shizuoka Cancer Center) ²¹⁾, the percentage of worries related to drug therapy has increased significantly (from 19.2% in 2003 to 44.3% in 2013) among worries related to cancer symptoms and treatment-related side effects and sequelae, especially hair loss, peripheral neuropathy disorders, anorexia/taste changes, and appearance changes (skin and nail symptoms) have increased, while nausea has shown a decrease. In addition, the recently launched immune checkpoint inhibitors have been reported to cause unique immune-related adverse events (irAEs) similar to those of autoimmune diseases. They occur in a variety of forms, and it is difficult to predict the timing of their occurrence, so they require management that is different from that required for conventional cancer drug ^therapy22).

Prevention, treatment, and care to alleviate symptoms caused by cancer itself and by side effects, complications, and sequelae associated with cancer treatment are collectively called "supportive care. While the number of patients suffering from side effects of cancer treatment is increasing, it has been pointed out that research and development of supportive care is insufficient, there are few medical guidelines for supportive care, and the standard of care has not been ^{established8)}.

Although supportive care as an empirical coping strategy is advancing through the efforts of healthcare professionals, the accumulation of scientific evidence is still at a stage where it is insufficient. This is due to the fact that the severity of side effects is difficult to quantify, making it difficult to obtain ^evidence23). In order to improve the quality of life of cancer survivors, efforts to promote research and enable appropriate medical treatment based on this situation are required. Pharmaceutical companies should also contribute by conducting clinical research and clinical trials to establish evidence for supportive care and by supporting research. In addition, the development of anti-cancer drugs with superior safety is also expected in the future.

When considering the contribution of pharmaceutical companies to "living with cancer," it seems that the primary importance lies in their contribution to the development of safer drugs and the establishment of evidence for supportive care, but they are also expected to contribute to the social suffering of cancer survivors who live with cancer. Figure 8 shows the information that cancer survivors needed but could not/found difficult to obtain at the time of their illness, and the need for information on employment and financial support was relatively large. Pharmaceutical companies provide information for patients on their websites. We surveyed the status of information provision for patients by pharmaceutical companies marketing anticancer drugs. (Figure 14).

As a result, it was found that information on financial counseling and employment support tended to be less frequently published compared to information on diseases, treatments, and supportive care by cancer type. Although the way information for patients is disseminated depends on the policies of each company, it would be desirable to provide information that takes cancer survivors' information needs into consideration.

In terms of information, the trend of mobile applications (hereinafter referred to as "apps") is noteworthy when considering cancer survivors' coexistence with cancer; on November 18, 2020, DAIICHI SANKYO CO., LTD. developed the first therapeutic app (target disease: nicotine dependence) in Japan that was approved by the pharmaceutical affairs bodies. The company issued a press release stating that it had entered into a joint development agreement with CureApp for a mobile application to support cancer treatment. In light of the recent increase in the number of outpatient cancer drug treatment cases, the two companies have indicated that they will jointly develop an application that contributes to improving patient QOL, based on the recognition that appropriate management of cancer-related symptoms such as fatigue and pain, and side effects of drug treatment outside of the hospital is important. This application aims to obtain medical device ^approval24). As shown in Figure 15, there are already a variety of cancer-related applications in Japan, some of which record symptoms for the purpose of assisting communication with medical staff, and some of which focus on monitoring side effects, all of which are provided free of charge. DAIICHI SANKYO CO., LTD.'s move to obtain medical device approval is a departure from the conventional approach and will be the focus of much attention in the future.

As mentioned above, there are many cancer-related patient organizations. Understanding the needs and concerns of cancer survivors is necessary for JPMA, and opportunities for collaboration with patient groups (meaning a wide range of activities from interaction and support to shared problem solving) are increasing. In light of this situation, the Japan Pharmaceutical Manufacturers Association (JPMA) has developed and published "Guidelines for Collaboration with Patient Organizations " ²⁵⁾ and "Transparency Guideline for the Relationship between Corporate Activities and Patient Organizations " ²⁶⁾. When properly implemented, collaboration with patient groups is highly meaningful for both patients and JPMA. It is hoped that appropriate collaboration with patient groups will continue to progress in the future.

It is possible for pharmaceutical companies to have cancer survivors in their companies, and it is important for a company to take employment measures based on information such as treatment status. It is sometimes difficult for in-house cancer survivors to sort out their own treatment status, living environment, and work information, etc. Therefore, it is necessary to enhance close counseling and support. According to a public opinion ^poll7) on cancer control conducted by the Government Public Relations Office of the Cabinet Office in November 2008, the top responses to the survey were "shorter working hours for hospital visits," "flexible leave systems such as hourly leave and long-term leave," and "incorporation of telecommuting" as measures necessary for cancer patients who are willing to work to continue working. The introduction of flexible work and leave systems is necessary. In addition, it is necessary to deepen understanding of cancer survivors through employee training, etc., and to create a company culture in which it is easy for cancer survivors to work. The importance of these efforts is no different for pharmaceutical companies. It is desirable to establish an internal work support system that can serve as a social model.

6. Summary

Through an overarching view of cancer survivors, it seemed that in order to realize "coexistence with cancer," it is necessary to understand the situation and needs of patients, build a support system based on this understanding, provide support through multidisciplinary cooperation, and have a coordinating function to enable such cooperation. In addition, the aforementioned five main contributions of pharmaceutical companies were thought to be necessary.

In next-generation healthcare, where one of the goals is to extend healthy life expectancy, the perspective of "coexistence with disease" is very important. It is the wish of all patients to be able to live their lives in their own way with a sense of purpose, no matter what disease they suffer from, not just cancer. I felt that it is necessary to consider the contribution of pharmaceutical companies in "living with diseases" by advancing research on other diseases as well.

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