3. Definition and Basic Principles of Psycho-oncology – Psycho-oncology

Version 2.0 · May 2023 · AWMF 032-051OL
Leitlinienprogramm Onkologie · Deutsche Krebsgesellschaft · Deutsche Krebshilfe · AWMF

3.1 Definition

Psycho-oncology, also referred to as „Psychosocial Oncology“, is a specialized field within oncology that addresses the experience and behavior, the specific stresses and coping skills as well as the social resources of cancer patients in connection with their cancer, its treatment and associated problems. The task of psycho-oncology is to scientifically investigate the significance of psychological and social factors and how they interact over the entire course of the illness, i.e. in the development, early detection, diagnosis, treatment, rehabilitation, and follow-up care; to make use of the the knowledge gained in the prevention, early detection, diagnosis, treatment, rehabilitation, outpatient care and palliative care of patients; and to implement this through concrete support and treatment services. In this context, psycho-oncology not only includes the persons directly affected by the disease, but also ther relatives and social environment. In addition, the primary medical caregivers (physicians) and nursing staff, as well as all professional groups working in oncology also need basic psycho-oncological skills and are therefore important target groups for continuing education and advanced training as well as supervision [2], [3], [4].

Psycho-oncology is a subfield of oncology that incorporates components from the disciplines of medicine, psychology, sociology, nursing science, practical philosophy and ethics, theology, social work, and education. It is characterized by interdisciplinary and multi-professional cooperation between different professional groups. Thus, psychologists, psychological psycho-therapists, social workers, educators, physicians of different specialties, art therapists, (specialized) nurses, physical therapists, occupational therapists and chaplains of different religious communities work together to provide psyho-oncological care for patients [5].

This guideline deals with the psychosocial aspects of cancer and psycho-oncological measures for the diagnosis, counseling, treatment, rehabilitation and follow-up care of adult cancer patients and their relatives. Psychosocial tasks in the scope of primary prevention in healthy people (prevention of cancer) or in children and adolescents with cancer are not the subject of this guideline (see S3 Guideline "Psychosocial Care in Pediatric Oncology and Hematology", AWMF register number: 025-002).

3.2 Targets

Psycho-oncological approaches target the psychological and social problems and disorders relating to cancer and its treatment. Their goal is to support the patient's ability to cope with the disease, improve psychological well-being, minimize the problems accompanying and resulting from the medical diagnosis or therapy, strengthen social resources, enable participation, and as a result, help to maintain or increase the quality of life of patients and their relatives [3], [6].

3.3 Tasks and Approaches

3.1 · Consensus-based Statement · modified 2023

The central tasks of psycho-oncological care are patient-oriented and needs-based information, psychosocial counseling, the psycho-oncological diagnosis and psycho-oncological treatment of psychological complaints, support in coping with the disease as well as the improvement of psychological, social and functional problems and burdens that arise.

Consensus: Strong consensus (98%)
References: [5]

Change note

The central tasks of psycho-oncological care are patient-oriented and needs-based information, psycho-social counseling, psycho-oncological diagnostics and psycho-oncological treatment to support coping with the disease as well as improvement / targeted treatment of psychological, social and functional follow-up problems.

Psycho-oncology includes psychosocial interventions such as counseling, providing information, crisis intervention, and psychoeducation, as well as psychiatric, psychosomatic and psychotherapeutic measures, that can be offered as needed during all phases of disease:

early detection and diagnostics
full and partial inpatient or outpatient medical treatment
full and partial inpatient or outpatient rehabilitation
follow-up care
palliative or terminal phase.

In addition it focuses on the specific problems and long-term effects faced by cancer survivors. Conceptually, the psycho-oncological treatment approach is characterized by a number of special features: It is primarily patient-centered, resource- and problem-oriented, has a supportive orientation, and focuses on the patient's current disease and life situation. Hereby, problematic processing responses are not pathologized in the sense of a primary psychological disorder, rather they are seen as individual attempts to cope, which, and if dysfunctional, require psycho-oncological intervention. Psycho-oncological psychotherapy is characterized by a cross-method approach and is not limited to one of the classical psychotherapy techniques or methods [3], [4],[7], [8].

The spectrum of psycho-oncological interventions includes:

relaxation methods, imaginative methods, and mindfulness-based interventions¹
psychoeducation
individual psychotherapeutic treatment
psychotherapeutic group treatment
psychotherapeutic couple interventions
psychosocial counseling
crisis intervention
special psycho-oncological techniques in the palliative setting (CALM, Dignity Therapy, etc.)
E-health applications
art therapy
psychopharmacological treatment taking into account possible interactions
occupational therapy

With the exception of relaxation techniques, the mind-body procedures belonging to the field of psycho-oncological interventions, such as yoga or mindfulness-based interventions, are presented in the S3 guideline "Complementary Medicine in the Treatment of Oncological Patients" (https://www.leitlinienprogramm-onkologie.de/leitlinien/komplementaermedizin) and are therefore not detailed in this guideline. There, the corresponding recommendations are presented in Chapter 5: Mind-body Methods. Likewise, physical therapy and exercise therapy are not covered in this guideline, rather, a separate guideline is in preparation.

¹ mindfulness-based interventions are discussed in the S3 Guideline Complementary Medicine in the Treatment of Oncological Patients, Chapter 5: Mind-body Methods (https://www.leitlinienprogramm-onkologie.de/leitlinien/komplementaermedizin)

3.4 Informational Needs and Psychosocial Care

3.2 · Consensus-based Statement · modified 2023

Cancer patients wish for psychosocial support. The psychosocial support of cancer patients is mainly realized by psychologists, psychotherapists, social workers, doctors, nurses, and chaplains as well as through the support of peers (self-help).

Consensus: Consent (79%)
References: [5]

Change note

Cancer patients want psychosocial support. This includes support from physicians, nurses, psychologists, psychotherapists, social workers and pastors, as well as support from peers (self-help).

The findings below are based on the de novo literature search on psychosocial support needs which was conducted together with the de novo search on mental comorbidity during the initial drafting of the 2014 Psycho-oncology Guideline and updated with the current literature through 2021. The update identified 8 new studies [9], [10], [11], [12], [13], [14], [15], [16], [17].

In the current literature, similar values are reported on the frequency of patients' informational needs with usually significantly higher values for information about the disease and treatment (70-90%) compared to the need for psychosocial support (about 35%). On average, the informational need of patients is M=28.0% (SD=24.1) with a Med=21.5% and a wide range of 1-74.5% [18], [19], [20], [21], [22], [23], [24], [25], [26], [27], [28], [29], [30], [31], [32], [33], [34], [35], [36], [37], [38], [39], [40], [41], [42], [43], [44], [45], [46], [47], [48], [49], [50], [51], [52], [53], [54], [55], [56], [57], [58], [59], [60], [61], [62], [63], [64], [65], [66], [67], [68], [69], [70], [71], [72], [73], [74], [75], [76], [77], [78], [79], [80], [81], [82], [83], [84], [85], [86], [87], [88], [89], [90], [91].

The literature update also shows that the informational needs of cancer patients hardly change during the average continuum of treatment, i.e. at the time of diagnosis as well as during and after medical treatment. Cancer patients most frequently identify informational needs with respect to dealing with distress and stress, talking to and connecting with other patients, coping with depression and other emotional burdens caused by cancer, sexuality and sexual relationships, self-help/support groups and spiritual support.

Cancer patients most frequently identify the need for support in the following areas: help in dealing with fears about the progression of the disease; with anxiety in general as well as with depression and sadness; help with concerns about loved ones, family and friends; help in dealing with uncertainty about the future and in dealing with lifestyle changes; help in regaining a sense of control, finding hope and meaning; help in dealing with problems of sexuality and intimacy; help in dealing with fears about pain and the deterioration of their physical condition; help in dealing with fatigue; help in dealing with fears and feelings about dying and death; help in dealing with fears about treatment and in dealing with changes in body image. Furthermore, those affected want advice and support with regard to personal and environment-related resources to ensure their social security (income, housing, work and occupation).

Of the 81 studies, 21 studies [92], [93], [94], [32], [95], [35], [39], [96], [97], [51], [98], [99], [100], [72], [74], [101], [102], [78], [103], [104], [91] show that across all studies an average of 33.9% of patients have a need for psychosocial support (range 15-67.3%). Among them, 13 German studies [25], [34], [35], [39], [42], [55], [72], [74], [105], [102], [11], [101], [106] show an average psychosocial support need among cancer patients of 29.9% (range 13.3-42%).

Systematic reviews show prevalence estimates of up to 93% for unmet information needs, up to 89% for unmet physical support needs, up to 89% for unmet psychosocial support needs, up to 63% for unmet support needs in the domain of sexuality, and up to 51% for unmet spiritual needs, with many of these unmet needs being experienced simultaneously [107].

Patients with rare cancers most frequently reported unmet support needs in the domains health care system and information (up to 95%), followed by mental health (up to 93%) and the domains physical health and daily living (up to 80%). Unmet needs primarily expressed during the follow-up care phase [108].

It should be added that not all patients who were identified as being distressed through screening seek psychosocial support [92], [109], [11]. For example, in a study of 935 acute inpatient cancer patients with various diagnoses, 71.6% of all patients and 53.9% of the distressed patients declined psycho-oncological support services during acute inpatient treatment [110].

According to the literature, a variety of reasons for not taking advantage of psychosocial support services are mentioned such as gender, personality characteristics, previous psychotherapeutic experience, informedness and setting conditions [12], [111], [15], [112], [74], [113], [114], [115]. In this context, Chapter 7.3 points out that in addition to distress screening, the subjective psychosocial support needs should also be asked (see Recommendation 7.5).

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