5. Providing patient information – Cervical Carcinoma

Providing patient information is an interdisciplinary task for all the professional groups involved in oncological care. Although providing the patient with medical information is primarily the physician’s task, it should be supported by other professional groups such as nurses, psycho-oncologists, etc. for specific topics [67].

The Dartmouth-Hitchcock Medical Center in New Hampshire, USA, can be used as an example to illustrate the way in which patient information can be implemented as an interdisciplinary task. Since 1999, patients have been offered decision coaching in the Center for Shared Decision Making in order to clarify individual preferences and prepare for consultation with their physician. Decision-making aids are also provided during this process. The goal is to facilitate shared decision-making and informed decisions. The role of decision coaches is played in particular by nurses [68]. In Germany, corresponding curricula for qualification as a decision coach have already been developed for the areas of breast cancer [69] and multiple sclerosis [70]. These curricula are intended to enable nurses to provide decision coaching using evidence-based decision-making aids. Providing written information and offering access to it is supportive and helpful for the patient in reaching decisions [71] [O'Connor, A. M. et al. 1999]. This includes specialist and factually authoritative information materials that are prepared in a comprehensible manner and are quality-assured [67].

Patients’ rights legislation in Germany refers to the “person providing treatment” rather than to a “doctor” [73]. The guideline group therefore agreed on the compromise “attending physician.” This is because the vast majority of medical information is provided by doctors.

As soon as a histopathological diagnosis of cervical carcinoma has been confirmed, the patient must receive information from the physician treating her in accordance with the criteria described above [54]. Basic patient information has usually already been provided by the private-practice physician or the physician who made the initial diagnosis or who has identified a recurrence or metastasis. As the period between and during the establishment of the diagnosis and the start of treatment is often very difficult for the patient, options for contacting self-help groups, making use of psycho-oncological care, and psychosocial cancer advice should already be mentioned at this early time-point, depending on the situation (see also the Level 3 guideline on “Psycho-oncological Diagnosis, Consultation and Treatment in Cancer Patients” (AWMF register no. 032/051OL)). Contact details for local self-help groups are available from the National Contact and Information Service for Promoting and Supporting Self-Help Groups (NAKOS):

Nationale Kontakt-und Informationsstelle zur Anregung und Unterstützung von Selbsthilfegruppen (NAKOS)
Otto-Suhr-Allee 115, 10585 Berlin
Tel.: 030 31018960  Fax: 030 31018970
E-mail: selbsthilfe@nakos.de
Internet: www.nakos.de

Contact details for advice services and places to go for patients with cervical carcinoma will also be available in the accompanying patient guideline.

The treatment that is ultimately recommended, alternatives to it, and the effects in each case are then discussed once again, possibly in a new discussion with the physician who will ultimately be administering the treatment (e.g., whether treatment should be carried out in the framework of research studies, whether surgery is possible, etc.) — as all of the information about the disease (with staging, etc.) is often not yet available at the first diagnosis. It is up to the patient whether her partner or a relative, or someone she trusts, should be included in the discussion or discussions. The discussion should take place in a form that is comprehensible and appropriate for the patient and in an appropriate framework [74]. The physician must inform the patient in accordance with the facts, without playing any matters down; despite this, hope for a cure or hope for alleviation, depending on the stage of the disease, should not be obstructed. The physician providing information should ensure that it corresponds to the current state of treatment [54]. It is not the patient’s signature on the consent form that should be regarded as constituting patient information, but rather the start of the discussion about the disease and the documented treatment options. The signature represents the provisional END of the process of providing information.

The physician providing information should explain the recommendations for a specific form of treatment, particularly if there is a case-related and consensus-based treatment recommendation from a multidisciplinary conference, and should present the principles of treatment and its benefits and risks. Evidence suggests that repeated recording of the patient’s wishes (decision preferences) during the treatment process is necessary in order to adequately involve the patient in the decision-making process [67].

In addition to his or her duty to inform (Section 630c), the attending physician is obliged under Section 630d of the “Act on Improving Patients’ Rights” (PatRechte G) to inform the patient orally, personally, and in a timely manner “of all circumstances essential to consent. This includes, in particular, the nature, scope, implementation, expected effects and risks of the measure, as well as its necessity, urgency, appropriateness, and prospects of success in relation to the diagnosis or therapy. The information must also refer to alternatives to the measure if several medically equally indicated and customary methods can lead to substantially different burdens, risks, or chances of recovery.”

Specifically, this refers to information about treatment recommendations, particularly when they have been agreed by consensus in a case-related interdisciplinary conference. The principles of treatment and potentially expected benefits and risks must be presented. Alternative forms of treatment, which may be possible for the patient in the context of participation in a clinical study, for example, should be explained. Effects on the patient’s lifestyle and quality of life should be mentioned in the discussion.

Particularly when providing information to premenopausal women, the effects of the treatment on fertility, as well as contraception issues, must be included. In addition, questions regarding the treatment of therapy-related ovarian insufficiency, its symptoms and treatment options should be discussed. Women should also be informed about options for fertility-preserving measures and referred to appropriate experts for advice if appropriate [75]. Due to the importance of tumor-associated fatigue as a sequela of adjuvant therapy, as well as the available evidence for preventive strategies such as physical exercise and educational measures, patients should be informed about options for prevention at an early stage [76]. The patient must be informed about measures for preventing lymphedema, the need for oncological follow-up, rehabilitation (see below), and social, financial, and psycho-oncological support [77]. For the above-mentioned areas (rehabilitation, social counseling, psycho-oncology), further specialist counseling should be recommended and initiated if needed. Every treatment requires the patient’s collaboration. Aspects that lie in the area of personal responsibility should be addressed. This section has been taken from the new Level 3 guideline on breast cancer, version 4.3 [67].

Matters to be included in the information discussion can be taken from the following information box as an orientation guide, with no claim to completeness or inclusion of every specific situation or patient request. It is important to make a distinction here between the standard treatment procedure — i.e., the treatment that is currently best supported by evidence and universally available; and experimental treatment procedures — i.e., procedures that have only been evaluated by individual centers. A separate recommendation has been formulated for the special situation of an information discussion in the palliative situation. However, this can also make no claim to completeness in relation to matters possibly to be included in an information discussion. These suggestions should of course also be discussed with the patient in ways adapted to the relevant disease stage.

The above recommendation is based on expert opinion and is borrowed from the Level 3 guideline on breast carcinoma (version 4.3) [67].

Another important point is mentioning side effects and interactions between drugs and complementary medicine. These should be explicitly included in the patient information, as there is strong demand among patients for complementary medicine measures both in the primary setting and after recurrences or metastases (see Oncology Guideline Program Level 3 Complementary Medicine in the Treatment of Oncological Patients, AWMF registry no. 032/055OL) [78].

The patient must be informed about the necessity for oncological follow-up care (see Chapter 16), rehabilitation (see Chapter 15), and about social, financial, and psycho-oncological support (see Chapter 13). Further specialist counseling should be recommended and initiated in these areas if needed (rehabilitation, social medicine, psycho-oncology). Every treatment requires the patient’s collaboration. Aspects that lie within their own area of responsibility should be mentioned [79]. The patient can be motivated to take part in treatment and also in follow-up through regular follow-up appointments and by being spoken to personally when prescriptions for supportive measures are being issued.

This recommendation is based on an expert consensus and is borrowed from the corresponding recommendation in the Level 3 guideline on breast carcinoma (version 4.3) [67]. PThe physician should encourage patients to request more information and should support their desire for active participation, by providing direct and practical aids for achieving these goals [O'Connor, A. M. et al. 1999] [81]. These include mention of written information that is available, particularly the patient guideline, as well as decision-making aids, addresses of self-help groups, cancer information services, Internet addresses, and the option of keeping their own patient diary/case history [54].

In collaboration with patients’ representatives, an evidence-based patient guideline is being compiled on the basis of the content of the present guideline (http://leitlinienprogramm-onkologie.de/Patientenleitlinien.8.0.html) oriented to the contents of the present guideline will be developed. Another independent patient information web site, http://www.patienten-information.de is run by the Federal Medical Council and the Federal Association of Statutory Health Insurance Physicians and provides both an overview of numerous items of patient information on the subject and also a transparent quality evaluation of the information, so that the patient can reach her own conclusions about the seriousness and reliability of the information offered [53].

This recommendation is based on expert opinion and is borrowed from the Level 3 guideline on ovarian carcinoma (version 4.0) [82].

The strength of the desire for information and inclusion in medical decisions varies widely among the affected patients (and also among their relatives), and may change over time [83] [84] [85]. When communicating information, the physician treating the patient should take this into consideration by leaving the patient sufficient time to process the information, and if needed offering several short discussions if possible instead of a single discussion, leaving sufficient room for emotions and communicating emotional security through empathetic behavior (see recommendation 5.12). Following the principle of participatory decision-making, the amount of information being communicated should be adapted to the patient’s needs according to the situation during the entire chain of diagnosis, treatment, and care.