13. Psycho-oncology and quality of life – Cervical Carcinoma
Major changes in the chapter on psycho-oncology and quality of life
Few changes have been made in this chapter. There are no new statements or significant changes in section 12.1, Psycho-oncology aids. Section 13.2, Measuring quality of life, has been considerably shortened.
B. Hornemann, J. Weis, H. Haase, F. Mumm
13.1 Psycho-oncological assistance
Patients with cervical carcinoma have a number of psychosocial burdens [491][492][493][494][495]. In addition to impairment of their psychological state, disturbances of sexual function are of immediate importance that have effects on their sense of self-esteem, body image and perceived sexual attractiveness, and consequently on their quality of life. The patient’s sexuality is particularly impaired in cervical carcinoma if comprehensive surgery or radio(chemo)therapy has to be carried out and adhesions develop in the treatment area or the vagina is shortened. In addition, treatment-related nerve injuries can disturb lubrication. Radio(chemo)therapy can lead to radiation fibrosis or fistula formation and can make the vaginal tissue more susceptible to infections. All of these treatments can make sexual intercourse very difficult — partly due to pain — or even impossible [496][497].
Psycho-oncological care for patients with cervical carcinoma is an integral component of oncological diagnosis, treatment, and follow-up and represents an interdisciplinary task.
- Consensus
- Strong consensus
Psychosocial counseling and psycho-oncological care for patients with cervical carcinoma are integral components of oncological diagnosis, treatment, and follow-up and represent an interdisciplinary task [498][499][500][501][502]. Psycho-oncological care for patients is based on an interdisciplinary approach involving all of the professional groups taking part in the treatment. Psycho-oncological measures should be incorporated into an overall approach to oncological care.
The physician treating the patient should therefore have basic psycho-oncological skills. In addition, a specialist in psycho-oncology should be a member of the treatment team in order to provide psycho-oncological counseling and treatment.
Psycho-oncological advice and support shall be offered to all patients and their relatives in a manner appropriate to their needs.
- Consensus
- Strong consensus
Psychosocial assistance (counseling and psycho-oncological treatment) includes patient-appropriate information and counseling, competent psychosocial diagnosis, and targeted psychosocial support. This includes ways of coping with the disease, treatment, and side effects and sequelae that occur, as well as dealing with continuing functional disturbances and other disease-related or treatment-related limitations such as financial difficulties and issues involved in returning to working life. Specifically, these measures can thus be carried out through psychological/psycho-oncological interventions, counseling by social workers, oncological rehabilitation measures, or other professional institutions. These forms of assistance are aimed at the patients and relatives in their milieu and apply to the entire disease phase ranging from diagnosis, information provision, treatment, supportive therapy, rehabilitation, to follow-up and palliative medical care where appropriate.
Individual needs and the corresponding advice and treatment shall be ascertained using a standardized screening procedure, in accordance with the Level 3 guideline “Psycho-oncological Diagnosis, Advice, and Treatment in Cancer Patients” (AWMF register no. 032/051OL`; version 1, January 1, 2014).
- Consensus
- Strong consensus
Diagnostic clarification and establishment of the indication for psycho-oncological interventions should be carried out in accordance with the Level 3 guideline on “Psycho-oncological Diagnosis, Advice, and Treatment in Cancer Patients” (AWMF register no. 032/051OL, version 1, January 1, 2014; update expected in 2021) [502]. This means that the patient should be informed about facilities for psycho-oncological assistance at an early point after establishment of the diagnosis or during the course of treatment. The aim should be to achieve close coordination with everyone involved in the patient’s treatment (e.g., the gynecological oncologist, family physician, gynecologist, radio-oncologist, outpatient nursing service) and a continuous flow of information should be ensured [494].
Standardized and validated screening procedures should be used to establish the psychosocial burden and need for psycho-oncological treatment [503]. A psycho-oncological screening instrument should be used as early as possible and repeated at appropriate intervals if clinically indicated, or when there are changes in the patient’s disease status (e.g., recurrence or progression of the disease). In accordance with the requirements given in the Level 3 guideline on “Psycho-oncological Diagnosis, Advice, and Treatment in Cancer Patients” (AWMF register no. 032/051OL), the Distress Thermometer or Hospital Anxiety and Depression Scale (HADS) are particularly recommended [504]. If the screening process shows positive results, a diagnostic discussion should take place for further diagnostic clarification.
The subject of sexuality should be actively explored in order to ascertain what further assistance may be needed and initiate the corresponding support measures.
- Consensus
- Strong consensus
Sexual problems should always be actively mentioned by those treating the patient, since due to the embarrassment and taboos associated with of the topic of sexuality patients rarely mention the subject on their own initiative.
Psychosocial assistance should be offered with a low threshold to all patients and their relatives in every phase of the disease.
- Consensus
- Strong consensus
In accordance with the Level 3 guideline on “Psycho-oncological Diagnosis, Advice, and Treatment in Cancer Patients” (AWMF register no. 032/051OL, version 1, January 1, 2014), psycho-oncological interventions are defined as nonpharmacological interventions in which psychological methods such as psychoeducation, stress management training, psychotherapy, and relaxation procedures are carried out on their own or in combination by a professional therapist in a personal interaction with cancer patients in order to reduce their psychological and social burden and improve their quality of life. Psycho-oncological interventions include:
- Relaxation methods
- Psychoeducation
- Psychotherapy (individual, group, couple)
- Psychosocial counseling
- Art therapy
These psycho-oncological interventions are indicated in cases of severe psychological burdens, relationship conflicts, and psychological disturbances — particularly depressive disturbances and anxiety disturbances [505], [506]. Psycho-oncological interventions should be adapted to the patient’s individual needs [507] and should follow the algorithm given in the Level 3 guideline on “Psycho-oncological Diagnosis, Advice, and Treatment in Cancer Patients” (AWMF register no. 032/051OL, version 1, January 1, 2014). The wishes of the patient and her partner and relatives should also be integrated into the patient’s psychosocial counseling and treatment.
Patients with cervical carcinoma have a number of psychosocial burdens [508][509][510][498][494]. In addition to impairment of their psychological state, disturbances of sexual function are of immediate importance that have effects on their sense of self-esteem, body image and perceived sexual attractiveness, and consequently on their quality of life. The patient’s sexuality is particularly impaired in cervical carcinoma if comprehensive surgery or radio(chemo)therapy has to be carried out and adhesions develop in the treatment area or the vagina is shortened. In addition, treatment-related nerve injuries can disturb lubrication. Radio(chemo)therapy can lead to radiation fibrosis or fistula formation and can make the vaginal tissue more susceptible to infections. All of these treatments can make sexual intercourse very difficult — partly due to pain — or even impossible [511][512].
13.2 Measuring quality of life
B. Hornemann, O. Damm, W. Greiner, H. Haase, F. Mumm
Research on the quality of life in patients with cervical carcinoma shall be carried out both in clinical studies and also in nursing-care research.
- Consensus
- Strong consensus
13.2.1 Importance of and data collection for quality of life
Including quality of life as a patient-relevant parameter for results is becoming increasingly important in medical and health-care research [513]. Quality of life is now a well-established criterion for evaluating the success of treatment, in which the focus is on the patient’s point of view. Particularly in the field of oncology, improving or maintaining quality of life can be described as an important treatment goal alongside reducing morbidity and mortality. The patient’s quality of life becomes more important particularly when higher response rates with new drugs or combinations of them are associated with increased toxicity and an exacerbated range of side effects. The explicit mention of quality of life in the German Social Security Code V (Sozialgesetzbuch, SGB) further underlines the relevance of this topic in the field of health policy in Germany.
Health-related quality of life must be regarded as a multidimensional construct that combines physical, psychological, and social aspects of health and places the patient’s subjective perceptions in the foreground [513]. In addition to physical status, the focus in quality of life research is thus also on the patient’s psychological state and social relationships.
There are now a large number of standardized and validated instruments with which the complex construct of quality of life can be measured.
For assessing quality of life, the EORTC recommends a complementary survey of quality of life [513]: generic (EORTC QLQ-C30; FACT-G) [513], entity-specific (EORTC QLQ-CX24; FACT-Cx) [513], and also supplementary individual items if necessary (e.g., from the EORTC item library) for symptomatic areas that are not yet reflected [513].
References
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[511] Klee, M., Thranov, I., Machin Prof, D., The patients perspective on physical symptoms after radiotherapy for cervical cancer, Gynecol Oncol, 2000. 76: p. 14-23., https://www.ncbi.nlm.nih.gov/pubmed/10620435
[512] Li, C., Samsioe, G., Iosif, C., Quality of life in endometrial cancer survivors, Maturitas, 1999. 31: p. 227-36., https://www.ncbi.nlm.nih.gov/pubmed/10340282
[513] Radoschewski, M., Gesundheitsbezogene Lebensqualität – Konzepte und Maße: Entwicklungen und Stand im Überblick, Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz, 2000. 43(3): p. 165-189.