5. Psychosocial Distress – Psycho-oncology

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

5.1 Quality of Life and its Assessment

Psychosocial distress, symptoms, and functional limitations are grouped under the concept quality of life [126], [127]. 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, body image, sexuality, social function, and satisfaction [128]. According to current understanding, health-related quality of life is a multidimensional, subjective and dynamic construct [129] with at least three dimensions: physical functioning/symptoms, psychological and mental functioning, and social functioning.

In the assessment of quality of life, patients are asked about various symptoms, complaints or subjective limitations in functionality with the use of standardized questionnaires [130]. Among the most common instruments used in oncology are the EORTC QLQ C30 inventory [131] as well as the FACT [132]. In addition to the more symptom-oriented questionnaires, there are also methods that allow subjective weighting of relevant quality-of-life aspects, such as the SEIQOL by Waldron et al. [133]. Furthermore, there are a number of generic, i.e. independent of diagnosis, quality of life assessment methods. Probably the best known method is the SF-36 [134]. To date, there are good reviews of the quality of life instruments currently available [135], [136], [137].

In the methods of the EORTC Quality of Life Group (http://groups.eortc.be/qol/) or the FACT working group of D. Cella (http://www.facit.org/), a basic survey is usually carried out by means of a core questionnaire (EORTC QLQ C30 or FACT-G) which assesses quality of life in a differentiated and multidimensional approach. Specific problems related to different diagnosis groups, special forms of treatment or the exacerbation of certain symptoms or other partial aspects of quality of life are collected via modules. For this purpose, different categories of modules are available. Initially, diagnosis-specific modules were developed to capture the special problems of individual diagnosis groups (e.g. breast cancer, bronchial Ca, cervix, etc.). In further development, treatment-specific modules (e.g., high-dose therapy) and symptom-specific modules (e.g., anemia, fatigue, etc.) were created. Core modules (e.g. information, patient satisfaction, spirituality) include the assessment of general treatment and diagnosis areas. The survey instruments of the EORTC Quality of Life Group and the FACT Working Group can be downloaded from the websites.

Figure 1 (Figure 1) shows a graphical overview (source: [130]):

The standardized questionnaires for assessing quality of life are suitable for cross-sectional surveys as well as for longitudinal measurements with the aim of mapping changes. The availability of reference or norm comparison values allows the interpretation of the found characteristics with regard to different disease groups or normal populations [130].

Computer-assisted methods in quality-of-life assessment open up new possibilities for use in clinical routine as well. Via computer-adapted testing based on touch screen technologies or mobile apps, the number of questions to be answered can be reduced due to an algorithm based on the difficulty of the individual questions. This allows the creation of an individual quality-of-life profile based on only a few questions which, for example, can be of great benefit in the area of palliative care [130].

5.2 Physical, Mental, Social and Spiritual/Religious Problems

5.1 · Consensus-based Recommendation · modified 2023

Cancer patients are confronted with physical, psychological, social, and spiritual/religious problems. These needs shall be taken into account in the psycho-oncological care.

Consensus: Strong consensus (100%)

Change note

Cancer patients face physical, psychological, social and spiritual/religious problems. These should be taken into account in the care provided.

Cancer patients are confronted with a range of different physical, mental health, social, and spiritual as well as religious problems during the course of their illness and medical treatment which can affect all areas of life and reduce the quality of life [138], [139].

Physical problems

Physical problems include physical weakness, exhaustion (fatigue), lack of physical performance; Pain such as wound and scar pain; Sleep problems such as difficulty falling asleep and staying asleep, nightmares; Lack of appetite, uneasieness, nausea, vomiting, diarrhea; Weight changes such as weight gain, weight loss, and cachexia; Swallowing problems; Respiratory problems such as dyspnea, cough; Fever, sweating, dizziness; Skin changes, inflammation around the mouth, bleeding, itching, body odor that is difficult to control and visible physical changes [138], [140], [141], [142], [143], [144], [145], [146], [147], [148], [149], [150], [151], [152], [153], [154], [155], [156], [157], [158], [159], [160], [161], [162], [163], [164], [165], [166], [167].

Mental health problems

Mental health problems can be described as impairments of general mental wellbeing (distress); anxiety, fear, worry, brooding, fear of the progression or recurrence of the disease (fear of progression/recurrence), fear of death, phobias, existential and social fears; furthermore, depression, despondency, grief, demoralization, drive disorders, social withdrawal, guilt, self-reproach, suicidal tendencies, helplessness and hopelessness, and loss of sense of dignity. Mental health problems also include self-esteem problems, self-efficacy problems, body image problems, shame, anger and resentment, aggression, dissatisfaction with treatment and medical staff, and maladaptive attributions of causality and control [168], [169], [170]. In addition to distress of the partner, children and relatives, distress of the medical staff can also occur [138], [155], [168], [169], [170], [171], [172], [173], [174], [175], [176], [177], [178], [179], [180], [181], [162], [182], [183], [184], [185], [186], [187], [188], [189], [190], [191], [192], [193], [194], [195], [196], [197].

Psychological distress, pain, and physical dysfunction are closely interrelated. Thus, psychological distress can increase pain perception and perceived limitations due to physical dysfunction, and in turn, severe pain and physical dysfunction can increase psychological distress.

Social problems

Social problems include loneliness, isolation, social exclusion and discrimination, communication barriers and conflicts in social interactions with family, relatives and friends, impaired decision-making ability, problems in the context of a trusting cooperation with medical and nursing staff (compliance) and lack of support when in need of help. Furthermore, financial burdens, problems at work and in the context of returning to work, as well as additional individual social burdens should be mentioned [138], [198], [199], [200], [201], [202], [203], [204], [205], [206], [207].

Spiritual/religious problems

Religion and spirituality can have both a protective as well as burdening nature in the context of cancer. Spiritual and religious problems include loss of faith, doubt, hopelessness and loss of meaning, as well as pronounced feelings of guilt, fears of judgement or punishment based on religious values, problems coping with illness, fears of death, and ethical conflicts in the hospital [138], [208], [209], [210].

5.3 Psycho-oncological Relevant Dysfunctions

The physical, psychological and social problems can lead to numerous dysfunctions that require psycho-oncological care or joint-care.

Physical dysfunction

Physical dysfunctions include: movement and mobility (limited mobility, limited arm range of motion); sensory impairments (sensory disturbances, polyneuropathies, impaired sense of smell and taste, balance disorders, vision changes, speech disorders), voice disorders; gastrointestinal and urologic dysfunctions (digestive disorders, bladder and bowel incontinence, micturition disorders, bowel dysfunction, swallowing disorders); sexual dysfunction (impaired libido, lack of lubrication, erectile dysfunction, pain during intercourse, premature menopause, infertility) and cognitive impairments (attention, concentration, and memory problems, fine motor skills, mental fatigue) [138], [211], [212], [213], [214], [215], [216], [217], [218], [219], [220], [221], [222], [223], [224], [225], [226], [227], [228], [229], [230], [231].

Psychological dysfunction

Psychological dysfunction includes limitations in emotional functioning and emotional role functioning; difficulties connecting with others; limitations in problem-solving skills and coping with the illness (including. problems in finding meaning and purpose, in developing a combative attitude, in self-encouragement and self-affirmation, in accepting the illness, in seeking information and distraction); lack of ability to mobilize social support; problems with lifestyle modification; and limitations in the ability to enjoy [138], [232], [233], [234], [235], [236], [237], [238].

Social dysfunction

Social dysfunction manifests as impairments in the activities of daily living: limitations in independent living and self-care (washing, dressing, meal preparation); limitations in mobility (leaving home, running errands, transportation, doctor's visits); educational and occupational limitations (work productivity, performance, extent of employment, physical work demands, psychosocial work demands, problems with supervisors, stress). In addition, limitations related to child care, family and social interaction, and taking care of dependents, as well as limitations in leisure activities and use of health care services [138], [239], [240], [241].

5.4 The Frequency of Subsyndromal Mental Distress

5.2 · Consensus-based Statement · modified 2023

Common subsyndromal symptoms in cancer patients include distress, anxiety, fear of progression/recurrence, and depressiveness.

Consensus: Strong consensus (100%)

Change note

Common subsyndromal stresses in cancer patients include distress, anxiety, progression anxiety, and depressivity.

Subsyndromal mental distress is subthreshold distress that falls below the cut-off value of the diagnostic criteria according to ICD-10 or DSM-IV. In cancer patients, they include general mental stress (distress), anxiety, especially fear of progression/recurrence, and depressiveness. Depressiveness is understood to be a depressed mood that promotes the development of a depressive mood or a depressive episode.

A general high level of mental stress (dstress) occurs with up to 59% of cancer patients [180], [181], [242], [243]. Severe anxiety is found in up to 48% of cancer patients [244], [245]. Thereby, the fear of recurrence and progression of the disease plays a significant role and occurs in up to 32% of cancer patients [246]. Depressiveness and dejection occur in up to 58% of cancer patients, often together with high anxiety [180], [181], [242], [243], [244], [245], [246], [247], [248], [249], [250].

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