10. Psychosocial aspects and quality of life – Prostate Cancer

Summary of the underlying evidence

The publications on the importance of recording quality of life, integration of psycho-oncological care and self-help have predominantly not been conducted as randomized studies. Therefore, the information is mostly formulated as statements of expert consensus.

 

Re: Recommendation 10.1

Ultimately, the patient themself decides whether and which information about their personal state of health should be disclosed to third parties. Due to the fact that the majority of therapy options can lead to a restriction of sexual activity and also to a change in physical appearance, diagnosis and therapy of a prostate cancer have consequences for a partnership. In addition, it is known that partners of PCa patients also have a strong need for information [1036] and sometimes suffer more from the diagnosis than the patients themselves [101], [1037]. Partners know the problems and possible processing mechanisms of the patients well [1038] and sometimes drive the physical and psychological problem-solving process more actively than the patients themselves [1039]. In addition, there is the general fact that the shock of the diagnosis and the multitude of new impressions impede the patient's ability to absorb information and that a partner who is present may be able to compensate for this.

 

Re: Recommendations 10.2 - 10.5

Education is one of the basic principles of good clinical practice. Patients with prostate cancer have a strong need for information and actively seek to gather information about their disease and possible treatment options [1036]. Informational needs vary greatly from patient to patient [1017], [1040], so information tailored to the individual needs should be sought.

Communicating treatment benefits and risks through the physician should support the patient in the decision-making process. The benefits and risks should primarily be described as the effects of a measure on the patient's lifetime and quality of life (consideration of patient-relevant endpoints). Probabilities should be presented in absolute numbers: "one in ten patients" or "ten in one hundred patients" instead of 10%. Reference variables should be clearly stated. The number of patients that must be treated for a patient to benefit from treatment (number needed to treat = NNT) is a presentation that is understandable to patients, but relative risk and relative risk reduction are difficult to understand and should be avoided.

According to research by Crawford et al., information about maintaining quality of life (45%), prolonging life (29%), and slowing disease (13%) are the most important educational content for PCa patients [1041].

Other important information for men with prostate cancer may include:

• basal anatomic and pathologic facts that enable patients and their families to understand the clinical picture and its implications;
• goals, risks, and possible consequences of diagnostic measures;
• possible consequences of the disease and risk of progression;
• treatment options including information on effect on survival and symptoms, benefits and risks, short-term and long-term toxicity, uncertainties in the data;
• arguments for and against immediate or delayed local treatment;
• effects of therapy on quality of life and partnership;
• rationale for treatment options that cannot be considered;
• information on contacts in urology, oncology, radiotherapy, palliative therapy, etc.;
• other sources of information, self-help options, and support services. (from [101])

Research shows that treating physicians often assess functional limitations and symptom expression differently than their patients [1042]. Individual patient feedback is critical to the success of education [1040].

 

Re: Recommendation 10.3

Individualized education based on the information needs and preferences of individual patients allows patients to play a more active role in the therapeutic decision-making process and thus reduces psychological distress [1043]. These were the findings of a study by Davison et al. 2003 [1043], in which patients were given the opportunity to computerize their information needs and preferences and bring them to the educational interview. Research by Fischer et al. [1044] suggests that younger patients want to be more involved in decisions and have higher demands in regard to information and decision making [1044].

 

Re: Recommendation 10.4

Educational content considered important and desired by patients is subject to strong interindividual differences, so that the creation of a standard educational catalog does not seem reasonable [1036], [1040]. It is therefore also likely that not all content that is important to the patient will be discussed in the educational interview. Crawford et al. interviewed patients and urologists about the educational discussion in a larger analysis. While the urologists surveyed felt that the most significant topics were discussed in all informed consent discussions (100%) (treatment options, Watchful Waiting (WW), life expectancy, patient preferences, costs, limitation of sexual function), only 20% of informed patients had this impression [1041]. Referral to other sources of information represents an opportunity to obtain information beyond the initial educational meeting with the physician. The evidence-based patient guidelines are provided by authors of the present medical guideline in co-operation with patient representatives and orient themselves at their contents. In the German context, the independent patient information portal http://www.patienten-information.de which is operated by the German Medical Association and the National Association of Statutory Health Insurance Physicians provides both an overview of numerous patient information resources on the topic and a transparent quality assessment of the information, so that patients can form their own opinion about the seriousness and reliability of the information provided.

Background information

Re: Statement 10.6 and Recommendation 10.7

The primary objective of psycho-oncological diagnostics is the early recognition of psychological, family-related and social stress, psychological and psychosomatic symptoms and the processing of the disease, particularly with regard to the consequences of the cancer and the treatment measures. In addition to the type of stress, the psycho-oncological diagnosis also determines its severity, the time of occurrence and the course of the stress. It also aims to assess individual and social resources and the quality of life as well as the subjective need for treatment and the motivation for treatment.

Quality of life and its assessment

Psychosocial distress, symptoms, and functional limitations are grouped under the concept of quality of life [1049]. The concept of health-related quality of life encompasses a wide range of aspects such as physical complaints, functional abilities, activities, family well-being, psychological well-being, treatment satisfaction, sexuality/body image, social function, and satisfaction [1050]. Current understanding is that health-related quality of life is a multidimensional subjective and dynamic construct [1051] with at least three dimensions: physical functioning/symptoms, psychological and mental functioning, and social functioning. In the medical sciences, quality of life is defined as the ability to act and subjective well-being in the somatic, mental, and social domains [1052]. Quality of life as an outcome measure is becoming increasingly prominent in the evaluation of therapeutic interventions in medicine and can expand the power of clinical trials beyond traditional clinical endpoints to include complex and patient-relevant endpoints [1051], [1052], [1053]. A large proportion of patients with prostate cancer are diagnosed at older ages. For these patients, quality of life may become even more important than traditional "hard" endpoints such as survival alone.

Measurement tools

In the assessment of quality of life, patients are queried about various symptoms, complaints or subjective limitations of functionality using standardized questionnaires. To assess functional outcomes and quality of life, patient-reported data are increasingly collected by standardized and validated questionnaires in the context of quality analysis and clinical trials. In this context, the data obtained from the patient side (patient reported outcome measures) are used for national and international outcome measurement. For this reason, the non-profit organization of the "International Consortium for Health Outcomes Measurement" (ICHOM) was founded in 2012 (http://www.ichom.org). In relation to localized prostate cancer, an already established data set exists here, which can be used for outcome measurement [1054].

The core of outcome measurement here is the "Expanded Prostate Cancer Index Composite" in the 26-question version (EPIC-26) [1055]. The basis of the EPIC questionnaire was the UCLA Prostate Cancer Index (PCI), which was created back in 1995. This was expanded and reworked and validated as a universally applicable questionnaire for all treatment modalities of prostate cancer. The following domains are queried:

• continence
• irritative/obstructive symptoms
• bowel function
• sexual function
• hormonal symptoms

By means of the EPIC-26 as part of the ICHOM standard set, a possibility of comparison is created with regard to the curative success of the respective therapies and the effect on the health and quality of life of the patients [1056]. In the context of the certification of prostate cancer centers, the use of the ICHOM Standard Set is recommended by both the German Cancer Society (DKG) and the umbrella organization of prostate centers in Germany (http://www.dvpz.de).

The modular measurement concept of the European Organization for Research and Treatment of Cancer (EORTC, http://groups.e-ortc.be/qol/) is also frequently used at the European level. Here, a baseline survey is usually conducted using a core questionnaire (EORTC QlQ C30) [1057], which measures quality of life in a differentiated and multidimensional manner. Specific problems with different diagnostic groups, special forms of treatment or the deepening of certain symptoms or other sub-aspects of quality of life are recorded via modules, for prostate cancer the module PR-25 [1058] is available. The American counterpart to the EORTC is the FACIT instrument (http://www.facit.org/), consisting of the core questionnaire FACT-G and prostate cancer module FACT-P.

Methodological aspects

All of the above questionnaires have undergone an elaborate development process. The measurement quality criteria reliability, validity and sensitivity were tested in psychometric studies. EPIC-26, EORTC and FACT are also frequently used in international multicenter studies. This is possible because the questionnaires (starting from the English original) have been translated into several dozen languages. The translation procedure is bound to defined methodological standards and follows a forward-backward format [1059], [1060].

Application perspectives

The development of quality of life questionnaires focused on their use in clinical trials. Computer-assisted procedures in quality-of-life assessment open up new possibilities for their use in clinical routine as well. Consistent use of this possibility will contribute to the improvement of treatment outcomes of localized prostate carcinoma.

Psychosocial problems

Psychosocial problems are common among prostate cancer patients [1045]. According to research by Steginga et al., one-third of prostate cancer patients have a moderate to severe need for help with psychological and sexual problems, as well as with navigating the health care system and health information.

Prostate cancer patients tend to conceal complaints or not report their full extent [1039]. This results from the desire to continue a "normal life", from fear of stigmatization and need of help and from the concern to burden the social environment [1047]. This tendency to avoid "active coping strategies" can be countered by active demand. Roesch et al. were able to show that "active coping" has positive psychological and physical effects and is a favorable prognostic marker for a return to normal everyday activity [1046].

Detailed recommendations as well as background information on psycho-oncological support and care of patients can be found in the S3 guideline on Psycho-oncological diagnosis, counseling and treatment of adult cancer patients [1012], http://www.leitlinienprogramm-onkologie.de/leitlinien/psychoonkologie/.

Re: Recommendation 10.7

The cancer diagnosis and associated fears affect not only the patient, but especially the immediate partner. In addition to these problems, which generally apply to all cancers, prostate cancer presents specific difficulties in the form of sexual disorders, changes in physical appearance, as well as urinary and fecal incontinence, which can place a severe strain on the relationship (see above). It is therefore desirable to detect possible emerging problems also in the partner and to offer appropriate therapeutic interventions (for detailed recommendations and information, see also [1012], http://www.leitlinienpro-gramm-onkologie.de/leitlinien/psychoonkologie/).

 

Re: Recommendation 10.8

In addition to patients' own experiences, Gray et al. [1048] were able to demonstrate in qualitative studies that participation in a self-help group improves knowledge about the disease and therapies, enables discussion of difficult topics, improves personal and social activity and the ability to talk to the family about the disease or to involve them in the processing.

85 to 90% of patients consider support groups important for information and emotional support [1041].