Information needs of cancer patients

While doctors and pharmacists have previously been the decision-makers for the use of a particular intervention, the pressure from patients is continually increasing. Especially when it comes to chronic illnesses, they no longer act as individual patients, but rather as part of well-informed and organized communities. These nationally and internationally active patient institutions are increasingly actively intervening in the opinion-forming process. The patient leaves his passive role, meaning he is no longer just a consumer of a prescription.
This development is increasingly increasing as our population ages. While in 1950 not even 10 % of the German population were older than 65 years, in 2025 almost 25 % of people in Western Europe will be over 65 years old. According to these figures, the age structure of Western Europe in 25 years will be similar to that of Florida, affectionately called “God’s Waiting Room” by Americans.

>> According to calculations by various population researchers, the number of people almost 70 years old will increase from 606 million in 2000 to around 2 billion in 2050. This age group is growing significantly faster than the world population, which is only doubling in the same period. By then, the number of people over 85 alone will increase sixfold from the current 26 million to 175 million. The number of people over 100 will increase twentyfold from 135,000 to 2.2 million. In 2050, there will be as many people over 65 living in China as there are currently in the entire world.
From 2010 onwards, the baby boomer generation will be retiring. Since life expectancy in the Western world increases by 2-3 months every year, it can be assumed that the majority of these women will live to be older than 85 years. Unfortunately, these people are not only getting older, but also sicker. Therefore, within the next 20 years, the number of cancer patients will double, the number of diabetics requiring insulin will triple and the expenses for patients with neuro-degenerative diseases will probably quadruple and the number of people requiring care will probably quadruple.
If you consider that at the beginning of this century, a city the size of Munich, Prague or Brussels in Europe dies of cancer every year, with estimated costs of around 120 billion euros per year within the European Union , you get a feeling for the challenges of the future.
In the modern imagination, the patient is an active participant in shaping his or her health. The paradigm shift from accepting to co-determining patients is leading to a redefinition of relationships and behavior in healthcare. Since the doctor largely controls the demand for medical services and products through his medical expertise and information advantage, patients have limited sovereignty from the outset. Politicians and health insurance companies therefore hope that the critical, co-determining patient will have an influence on the system that has so far been controlled by the service providers.
We can assume that around 30 percent of people in Europe will develop cancer during their lifetime. Although oncologists have been administering chemotherapy for over 50 years, the question of what the indication cancer means for patients has so far only been rudimentarily asked, even though almost 40 % of all patients will succumb to their suffering in 2009. For this reason, the Health Care Competence Center (HC3) in collaboration with the European Health Care Foundation Zurich (EUHCF) has addressed this question using two studies (Cope1 and IBCP study).
Cope 1: Communication between patients
and the Health Care Industry
We surveyed 780 patients in Germany who suffered from diabetes (50 %), cardiovascular diseases (30 %) and cancer (20 %). When it comes to both aspects of trust and experienced support, patients have the strongest ties to their doctors. The trust placed in them and the support they receive is extremely high. The specialized doctors who received almost 100% approval from their patients performed particularly well here. The other service providers were rated significantly worse by patients. Only half of the participants expressed their trust in the pharmacists. Pharmaceutical companies and politicians bring up the rear when it comes to trust and support; Only 11 % of the patients rated the drug manufacturers and 1 % the politicians as trustworthy.
In addition to the doctor, the chronically ill patient is the person who has the greatest influence on the success of treatment. Some patients have already recognized this and as a result around 90 % of patients want to have as much influence on therapeutic decisions as their doctor. Patient empowerment is theoretically accepted and desired by most patients - although it is often not yet really implemented in practice in the doctor-patient relationship. Doctors are therefore asked to treat their patients as equals. You must recognize that a hierarchical doctor-patient relationship stands in the way of successful therapy because such a relationship in no way supports the self-management behavior of the chronically ill patient. For 91 % of chronic patients it is important (31 %) or even very important (60 %) to get as much information as their doctor or pharmacist. Almost 100 % of patients say that the information they receive about this should be accurate, balanced, understandable and helpful; This information should also be controlled by an independent organization.
Special case oncology: IBCP study
Implementation: The questionnaires were conducted under the direction of Prof. Dr. Dr. Fred Harms (HC3) in collaboration with Prof. Dr. Dorothee Gänshirt (EUHCF) developed it and sent it to the patients. Within 15 months, several hundred patients with solid carcinomas, with a focus on breast and colon cancer, were included in the study. Of these patients, 680 have been evaluated to date. 85 % patients had breast or colon cancer. The average age of the patients was 63 years.
Based on the study, communication concepts for cancer patients can be developed from the perspective of chronically ill people. The following questions are therefore of interest: 1. Where do patients with cancer get information? 2. How do patients perceive the subjective value of the information?
A particular focus was on the following areas (alphabetically):
• Pharmacy
• Drug manufacturers
• Doctor (specialist (oncologist) versus family doctor)
• Family
• Internet
• Classic media (magazines and books).

The information was rated by the patients according to the following parameters:
• Parameter 1: comprehensive
• Parameter 2: understandable
• Parameter 3: high quality content
• Parameter 4: helped in coping with the disease

Representation of satisfaction with the information based on parameters 1 to 4:
• Who gave me comprehensive information as a cancer patient?

When it comes to comprehensive information, from the perspective of cancer patients, it is primarily the oncologists who form the opinion. This opinion was held by 63.5 % of the patients surveyed. In contrast, the family doctor is “relatively” insignificant compared to the specialist. Compared to hemato-oncologists, not even 40 % of patients were of the opinion that these doctors provide relevant or comprehensive information for the cancer patient. From the point of view of tumor patients, the pharmacy is just as “unimportant” as the family doctor. Only 34.5 % of patients are of the opinion that they receive comprehensive information on this topic in the pharmacy. Only the pharmaceutical industry is even less important from the perspective of cancer patients. With regard to the drug manufacturers, only 24.2 % of patients believed they were fully informed. When it comes to providing appropriate information, from the patient's perspective, information from industry has the same importance as that from friends, acquaintances and family (24.3 %). It is interesting, however, that according to the patients' statements, the information provided by the oncological self-help groups is viewed as comprehensive by 47.4 % patients. What is particularly interesting is that 58.3 % of patients consider the Internet to be an appropriate source of information. The classic print media in particular are of particular interest from the subjective perspective of cancer patients. Just as with the hemato-oncologists, 63.5 % of cancer patients were of the opinion that books and magazines in particular provide comprehensive information.
Who has been there for me as a cancer patient
clearly expressed?
When it comes to who has expressed themselves clearly and understandably, or to the point “Who speaks the patient’s language” then the oncologists with 72.8 % are the “communication professionals”. General practitioners also do well. After all, 58.7 % of patients are of the opinion that general practitioners express themselves understandably when dealing with this difficult systemic disease. From the perspective of cancer patients, the pharmacy is also an understandable contact. After all, almost half of the patients (46.9 %) are of the opinion that the pharmacy staff is able to give patients support that is also understood. From the patients' subjective point of view, the Internet is also able to provide them with understandable information, similar to the pharmacy. After all, 43.2 % patients were satisfied with the “language” of this medium. In contrast, both friends, acquaintances and family (36.1 %) and the pharmaceutical industry (35.0 %) were rated as rather incomprehensible. Classic print media in particular are viewed as clear and understandable in their language by 59.9 % of patients. From the patient’s perspective, these media speak the “patient language” just as well as general practitioners. However, the self-help groups are of particular interest. 62 % of the patients were of the opinion that people in self-help, who very often suffer from tumors themselves, know what a patient understands. Thus, from the patient's perspective, the oncological self-help groups are almost as well trained as the oncologists in their ability to understand this complex disease (Fig. 1).
Who will provide me with quality as a cancer patient?
information available?
What is not surprising is that the oncologist is the opinion-forming multiplier, especially when it comes to passing on high-quality information (e.g.: What should I do as a patient if the tumor progresses?). Therefore, 70.1 % of cancer patients were of the opinion that the answers to a corresponding question could primarily be asked by a specialist. But from the patient's perspective, the family doctor (53.5 %) and the pharmacist (46.9 %) are also able to provide relevant information. The Internet (46.0 %) is also rated similarly to the pharmacy, for example. Again, the pharmaceutical industry (38.3 %) or friends, acquaintances and family (27.4 %) have the lowest relevance. It is interesting that from the perspective of cancer patients, self-help groups (52.2 %) are just as important in terms of generating high-quality medical information as, for example, family doctors. From the perspective of cancer patients, the classic print media are considered to be much more relevant. Similar to oncologists, 66.7 % of patients believed that books and magazines provide high-quality information. They are not only able to call people for colonoscopies, but they also provide active life support. They provide specific information about relevant diseases, show alternatives and provide information about new research results (Fig. 2).
Who helped me as a cancer patient?
Helped to cope with illness?
From the perspective of cancer patients, there are major differences in satisfaction with the information provided by the various institutions. Oncologists in particular are the most important information multiplier for tumor patients. Regardless of whether the information is comprehensive, clear and understandable, correct in content and of high quality, 61.3 % of patients were of the opinion that the information from hemato-oncologists helped them to cope with the disease. In comparison, only 47% of cancer patients were of the opinion that the information provided by family doctors was relevant to coping with the disease (Fig. 3).
Although 70 % of cancer patients use the Internet directly or indirectly, for example with the help of younger family members, similar to the general practitioners, satisfaction with the information provided was manageable. Not even half of the patients surveyed (45.4 %) were of the opinion that the Internet makes a relevant contribution to coping with the disease. In this survey, only the pharmacy (39.7 %) and the pharmaceutical industry (31.2 %) scored even worse than the Internet (Fig. 3).
In addition to the oncologists, family or friends and acquaintances (55.9 %) and, above all, self-help groups (62.6) were also of crucial importance. What catches the eye, however, is the subjective perception of cancer patients with regard to the classic media. Books and magazines in particular are of great interest from the patient's perspective. After all, 67.2 % of the patients were of the opinion that these print media made a relevant contribution to coping with this disease (Fig. 4-5).
Summary: General satisfaction with the
Information is more than expandable
For patients with tumors, the hemato-oncologist is the most important contact person in all areas. This means that every patient should have the opportunity to communicate regularly with an oncologist, regardless of whether this specialist works in a clinic or practices in one of the numerous oncological practices. In this study, 67.1 % patients were satisfied with the work of these doctors. Especially when you consider what this indication means for the individual and their families, this high number of “satisfied” patients is very impressive and speaks for the high medical and human quality of these doctors.
But family doctors (48.7 %) and pharmacies (42.1 %) are also able to make a relevant contribution to half of the patients with this serious, often systemic disease. What is interesting, however, is that from the patients' perspective, the Internet (44.6 %) is at least as important or almost as important as the work of pharmacists or doctors. Db in a positive sense that the use of the Internet has become well established among patients with tumor disease. In a negative sense, however, this also means that doctors and pharmacists can have just as manageable an influence on patients as a conventional search engine on Google.
What is not really impressive is that although patients with tumor disease do not consider the information provided to them by friends, acquaintances and, above all, family, to be of high quality, the influence of these people on the patient and possibly even on them are invaluable during the course of the disease. It is therefore somewhat positive that 42.8 % of patients express satisfaction with their primary social environment and that this makes just as important a contribution as, for example, the pharmacy or family doctor.
Although millions are being invested in campaigns such as “Research is the best medicine”, only a few tumor patients (25.1 %) express satisfaction with the information provided by the pharmaceutical industry. This is of course partly due to the ban on advertising for prescription medicines, but it only partially explains the relatively negative attitude of patients. This situation seems somewhat paradoxical in the sense that this industry has been able to develop innovative, ie medically relevant, therapy options not only in the area of solid carcinomas, but also in hematological diseases.
In contrast, the relevant self-help groups have become indispensable in coping with this illness. 59.8 % of patients are satisfied with the work of these groups. From the patient's point of view - at least in the special case of oncology - the work of self-help is more important than, for example, support from family doctors.
Although only 680 patients have been evaluated so far and not all health care institutions such as health insurance companies or health policy are part of this study, it shows that the real “winners” of this study are the media with their print products. 63.8 % of cancer patients are satisfied with the work of relevant publishing houses. With regard to disease management, the work of Axel Springer, Burda, Gruner + Jahr etc. is almost as important as the work of oncologists. Db in the positive sense that an institution has established itself “on the market” that provides active life support based on the patients’ subjective perception. In a negative sense, however, it means for general practitioners and pharmacists that institutions that only have “conditional” medical or pharmaceutical qualifications in the traditional sense are overtaking the classic multipliers on the “right” without doctors and pharmacists noticing. The question therefore increasingly arises for all healthcare providers: What can we learn from the self-help groups in oncology and, above all, from the classic print media? After all, these two institutions, along with the hemato-oncologists, seem to speak the language of cancer patients best. Based on the competence of self-help and the media, it would be desirable if family doctors and pharmacists in particular put more time and effort and empathy into the care of these patients in the family doctor's practice or in the office. After all, one in three people in our society is an aspiring cancer patient (Fig. 6).
In view of these findings, the action point in the national cancer plan that has just been presented is spot on, which states that the professional groups involved in oncological care should explain the diagnosis, therapy and treatment to patients in an understandable manner and should involve them more closely in treatment decisions. This means that the cancer plan finally stipulates that people suffering from cancer - and their relatives - are dependent on understandable and reliable information, advice and support services. That is why the partners involved in the National Cancer Plan are to establish an internet-based platform that, with financial support from the Federal Ministry of Health and at the address www.netzwerk-krebsinformation.de, is intended to provide high-quality information - free of commercial interests. The correctness of this approach is confirmed by the present study, which shows precisely that information in which some kind of commercial interest is assumed or even assumed is not trusted anyway. <<