9. Psychooncological and psychosocial aspects, palliative care – Soft Tissue Sarcoma

Background

The use of a psycho-oncological screening instrument should be performed as early as possible and repeated at appropriate intervals if clinically indicated or if the disease status of the patients changes (e.g. recurrence or progression of the disease). Standardized and validated screening procedures should be used [600] (cf. S3 Guideline Psycho-oncology, Chapter 7.3.1). In case of a positive result of a screening and/or patient request, a diagnostic interview to clarify psychosocial stress and psychological comorbidity should take place.

Psychological, social and spiritual aspects and their impact on patient function, are summarized in the term quality of life. The recording of quality of life as a patient-relevant outcome parameter is becoming increasingly important in medical and health science care and research [601], [602], [603]. The EORTC recommends a complementary survey of quality of life [604]: generic instruments, entity-specific instruments, and, if necessary, supplementary individual items (e.g., from the EORTC Item Library) [605] for symptom domains not previously mapped. Generic aspects can be collected using FACT-G or EORTC QLQ-C30.

For sarcoma diseases, no entity-specific survey instrument exists so far, which makes a valid quality-of-life measurement in care as well as an endpoint in scientific activities very difficult. A sarcoma-specific quality of life module for complementary use with the EORTC QLQ-C30 is currently being developed in a collaboration between the EORTC Quality of Life Group and the Soft Tissue and Bone Sarcoma Group.

Every patient must be offered the possibility of counseling by social services and psycho-oncology in all phases of the disease in a local and timely manner, proof is required. In the survey form „Sarcoma Center - Module in the Oncological Center of the German Cancer Society” [606] it is referred with regard to psycho-oncology under 1.4.1 and social work under 1.5.1 that the „requirements of the survey form Oncological Centers“ are to be fulfilled. For social work, the expert standard "Psychosocial initial counseling of oncological patients by social work in inpatient care (PEOPSA)" [607], [608] should be applied as soon as it is adopted. Preparing outpatient follow-up care by outpatient psycho-oncology service providers is stated under 1.4.7 in the task profile of psycho-oncology in the survey form for Oncology Centers of Excellence and Oncology Centers [609].

The special situation of patients in and after treatment for soft tissue sarcoma is characterized in detail in Recommendation 9.6. The background text on psychosocial counseling must be taken into account when describing outpatient psychosocial and psychotherapeutic services at the center.

Because of the rarity of the disease, patients with adult soft tissue sarcomas often experience delayed initiation of treatment, mismanagement of diagnosis, or primary mistreatment [610], [611]. At the same time, it is often difficult for them - even in the medical system - to obtain adequate information. The feelings of uncertainty, helplessness or mistrust that may result from this can make it difficult to build relationships between patients and therapists in centers. This should be given special consideration by medical therapists and reflected in interdisciplinary exchange with psycho-oncologists.

Background

The rarity of the disease dictates that primary treatment of patients is either local with subsequent presentation to a sarcoma center or primary at a specialized center. These are often located far from the patient's home. Although psychosocial distress tends to be highest at the time of diagnosis and primary treatment, a similar proportion of patients show relevant signs of psychosocial distress such as depression, (progression) anxiety, and distress even after a long disease-free survival [590], [610], [611], [612], [613], [614], [615], [616]. After therapeutic measures that are typically very intrusive and can be functionally restrictive for patients with soft tissue sarcoma, reintegration into everyday life and the limitations experienced due to disease and therapy consequences, can also threaten self-esteem and confidence. [617]. Serious problems with body image and mobility limitations, especially after sarcomas localized to the extremities (about 70% of cases), can lead to avoidant coping strategies and to social isolation with negative effects on quality of life [618].

Therefore, even after the primary treatment in the specialized center - which offers psychosocial services - patients under great stress should be able to receive outpatient psychotherapeutic treatment close to home. This can address the protracted problems mentioned above and provide help in finding personal solutions. The same applies to any problems in family relationships that may become apparent in this phase of the disease.

In the case of repeated treatment following tumor recurrence, a familiar contact person close to home is helpful ensuring sufficient support for the considerable stresses and strains then experienced and the process of adjustment that is once again required.

Due to the rarity of their diagnoses, patients with „Rare Cancer“ often rely heavily on additional support. Here, contact with a patient/self-help group can be very helpful. The organizations active in Germany (e.g. German Sarcoma Foundation (formerly Das Lebenshaus), SOS Desmoid and others) are well connected with certified sarcoma centers and associated cooperation partners. Additionally, there are often connections to patient organizations in other countries.

Patient/self-help groups usually offer free counseling as well as information and assistance to affected persons, carers and companions (relatives).

These groups can help patients find their way to specialized centers as early as possible and help them better understand their disease and treatment options. Knowledge about available clinical studies and special therapy options can also be conveyed, using plain language information rather than medical terms. Often, contact with a patient/self-help group also facilitates open discussion with other affected individuals and the solidarity from such association gives the important feeling of not being alone with a rare disease.

However, experience has shown that the use of non-quality-assured services (online groups, websites, forums, chats, etc.) can also lead to greater uncertainty and spreads disinformation among patients. Therefore, only references to quality-assured self-help/networking offers should be given.

Two essential offers for sarcoma patients in Germany should be emphasized here:

GIST/Sarcoma - www.sarkome.de - the non-profit German Sarcoma Foundation.

The „patient range“ of the Foundation is the successor of Das Lebenshaus, formed in 2003 as the registered association for GIST/Sarkome. The German Sarcoma Foundation is „a Mitmach organization“, in which patients, and all professions involved in the diagnostics and therapy co-operate. The Foundation also has a focus on sarcoma research, which has received too little funding to date, and it is committed to improving the quality of care/treatment.

Desmoide - www.sos-desmoid.de - The self-help organization „sos-desmoid e. V.“

offers people with a desmoid (aggressive fibromatosis) and their relatives support and guidance during the course of the disease, as well as information about desmoids to anyone interested.

Both organizations are members of the international network of all GIST/sarcoma and desmoid patient organizations - Sarcoma Patients EuroNet e.V. (www.sarcoma-patients.eu), founded in 2009.

Background

To date, no entity-specific data are available on the palliative care of patients with metastatic adult soft tissue sarcoma. Therefore, for patients with non-curable adult soft tissue sarcoma, the basic recommendations for palliative care of patients with non-curable cancer should apply.

In principle, early co-care by general or specialized forms of palliative care integrated into the daily routine of care of oncologic patients can be helpful and effective for patients [619], [620], [621], [622], [623], [624], [625], [626].

The goals here are to inform patients and their relatives about the possibilities and accessibility of specialized palliative care, to integrate physical and/or psychosocial needs not previously identified or considered into the treatment concept, even in preparation for the developing course of the disease. The complexity of the situation should be repeatedly assessed and take into account both patient and family needs using validated multidimensional assessment tools, the patients' functional status, and the phase of illness. Patients more complex needs should receive specialized palliative care (SPV) [619], [620], [621], [622], [623], [624], [625], [626].