10. Rehabilitation, psychosocial care and supportive therapy – Oropharyngeal and Hypopharyngeal Carcinoma

A systematic literature search on occupational rehabilitation after laryngectomy in laryngeal and hypopharyngeal cancer patients [689] revealed that re-employment rates after surgery vary greatly depending on the country in which the patient lives and when the study was conducted: Spain, 1990s, 11% [690], USA, 1970s, 26% [691], Soviet Union, 1980s, 27% [692], France, 1980s, 50% [693], Soviet Union, 1960s, 51% [694] and Norway, 1970s, 63% [695] of all patients. If only those who were employed before the operation are considered, the reintegration rates were 20% in Germany in the 1980s [696], 32% in Germany in the 1960s [697] and 41.5% in the USA during the 1970s [691].

There is little corresponding data available for Germany. In the Central German Laryngectomy Study [689], 38% of patients ≤ 60 years of age before laryngectomy were employed, one year after laryngectomy only 13%, two years 15% and 3 years 14%. Most patients (65%) received a disability pension. Of all patients who were employed before the laryngectomy, 27% still had a job after treatment.

In another register-based study in the Free State of Thuringia, three quarters of the head and neck tumour patients surveyed (at least 2 years after diagnosis, ≤ 60 years old) stated that they had been employed before the diagnosis; at the time of the survey, only one third were still employed [698]. A meaningful analysis of the few international publications by Zebralla et al. on the return to work of head and neck cancer patients [685] showed that, depending on the study, between 10% and 67% of pre-therapeutic working patients did not return to work after curative therapy, with younger patients returning to work more frequently than older patients. Between 4.1% and 40% of patients took early retirement or retired. The main reasons for not returning to work were physical symptoms such as fatigue, weakness, pain, dysphonia, oral dysfunction (trismus, xerostomia, difficulty eating) and loss of appetite. In addition, there were psychological limitations that manifested themselves in depression, memory and sleep disorders. Alcohol abuse, low level of education, lower income, few or no social contacts and single marital status were also associated with unemployment or early retirement. Up to 36% of patients changed jobs after therapy. The main reasons for this were functional complaints caused by the carcinoma or as a result of its treatment. In addition, some studies showed a significant reduction in weekly working hours compared to working hours before the tumour disease. Up to 52% of working patients worked significantly fewer hours after their tumour disease. These factors lead to a reduction in the household income of those affected, which was reported by up to 56% of patients (overview [685]).

The median time for patients to return to work after treatment ranged from 2 to 9 months in the various studies. The majority of patients who returned to work (up to 71%) did so within 6 months of the end of treatment. However, a relevant proportion (15% of patients) also returned to work more than 12 months after completing treatment. The self-employed returned to work more quickly than the non-self-employed. There was also a difference between blue collar workers and white collar workers. This was shown by Handschel et al. [699], among others, in a German collective of 755 employees. In this collective, 52% of patients did not return to work after diagnosis and treatment of head and neck cancer. Here, 63% of blue-collar workers did not return to work after tumour therapy, compared to only 41% of white-collar workers. Of those who returned to work after therapy, 63% of white-collar workers, but only 37% of blue-collar workers returned to the same job. Overall, white-collar workers returned to work earlier, with 32% of white-collar workers and 12% of blue-collar workers returning to work after 3 months. Blue-collar workers also reduced their working hours more frequently than white-collar workers (overview [685]).

With regard to gender, there were divergent and sometimes contradictory results in the individual studies, so that it cannot be conclusively determined whether men or women with head and neck cancer return to work earlier or more frequently. Depending on the respective study, different tumour localizations were indicated as prognostically favourable for a return to work. In the analysis by Vartanian et al. [700], patients with laryngeal carcinomas had the highest rate of return to work, followed by patients with oral cavity carcinomas. In contrast, in the study by Buckwalter et al. [701], patients with oropharyngeal carcinomas returned to work most frequently, while patients with oral cavity carcinomas also returned to work at a lower rate. In the study by Verdonck et al., patients who had undergone treatment for oral cavity and oropharyngeal cancers had a higher rate of return to work than those with nasopharyngeal cancers [702]. Most studies that investigated the influence of tumour stage on working life after the end of treatment found a negative association of these parameters with subsequent employment (overview [685]). Comorbidity (Charlson Comorbidity Score ≥ 3) was also a negative predictor of return to work.

While Pearce et al. [703] showed that patients who did not receive chemotherapy as part of treatment were more likely to take no time off at all and return to work more quickly than patients who had undergone chemotherapy, and Buckwalter et al. [701] showed a negative association between multimodal therapy and return to work, other studies investigating the relationship between treatment and return to work found no significant differences between treatment modality and post-therapy employment rate (overview [685]). Patients who did not return to work at all or who changed jobs were significantly more likely to be dissatisfied with their own appearance after treatment for their head and neck tumour than patients who returned to their original job after treatment [701]. The global quality of life of patients who returned to work after treatment was also better [698], [703], [704], [705]. In a recent meta-analysis in 2022, Yu et al. showed that head and neck cancer patients who returned to work had lower levels of anxiety and depressive symptoms on the Hospital Anxiety and Depression Scale [704].

According to Zebralla et al. [685], the following predictive factors for the professional reintegration of patients with head and neck tumours, including oropharyngeal and hypopharyngeal carcinomas, are summarized:

Positive predictors

• Employees/civil servants
• High professional qualification
• Satisfactory aesthetic result postoperatively
• Voice prosthesis for laryngectomy

Unclear predictors

• Gender
• Tumour location
• Treatment modality

Negative predictors

• Charlson Comorbidity Score≥3
• Advanced tumour stage
• Alcohol abuse
• Low level of education
• "Single" marital status
• Lack of social contacts
• Depression
• Functional limitations and physical symptoms (including pain, dysphonia, dysphagia)

Overall, there has been growing interest in employment after curative treatment of patients with oropharyngeal carcinoma in particular over the last 20 years, with an increasing number of publications. However, the limited comparability of the available studies must be taken into account, as the analysis dates were different and not all patients were gainfully employed before the start of treatment. In addition, the studies showed heterogeneous patient groups with different tumour locations, stages and therapies, which most likely do not affect employment to the same extent. Compared to patients with tumours of other entities, head and neck tumour patients primarily have to struggle with treatment side effects that are visible to the social and professional environment directly or via social interaction or their dysfunctionality caused by reduced organ function. Mehnert et al. [680] were able to show that almost half of breast cancer patients returned to their original job immediately after rehabilitation, compared to only around a third of head and neck cancer patients. This may be due to the advanced stage of the tumour at the time of diagnosis and a reduced physical condition [680].

In summary, up to 50% of pre-therapeutic head and neck cancer patients do not return to work after tumour therapy, and job changes and reductions in working hours are also common. Positive effects have been shown for rehabilitation measures and reintegration programs. For this reason, it is an important goal of the social and socio-legal counselling services to secure material and economic existence as well as participation in working life and to enable access to social benefits. The psychosocial counselling offered by the social services should be low-threshold, i.e. patients with oropharyngeal and hypopharyngeal carcinoma should receive initial oncological counselling from the social workers at acute hospitals and rehabilitation facilities in an inpatient context. This ensures that those affected and their relatives receive basic psychosocial information, e.g. information on social law, advice on medical and occupational rehabilitation options, assistance with applications, psychosocial counselling in conflict situations or for coping with the disease and, if necessary, initial interventions are possible.

Outpatient cancer counselling centres also offer low-threshold psychosocial counselling on psychological, social and socio-legal issues for the phase after inpatient treatment and provide information on self-help groups and other counselling services. In recent literature, the importance of occupational therapy in the occupational rehabilitation of head and neck tumour patients is particularly emphasized. Occupational therapists play an important role in daily coping as part of reintegration through lifestyle management and the use of positive coping strategies for daily routine management. Occupational therapy can positively impact the debilitating stress and anxiety associated with head and neck cancer diagnosis, treatment and recovery, while facilitating a return to previous or adapted daily routines [705]; [706].

Around 30% of all patients with head and neck tumours suffer from severe psychological stress [707] [708] [709] [710] [711] [712] and their relatives also frequently suffer from anxiety and depression as well [712].

Often these psychological stresses are not actively communicated by the patients, so that they are not noticed by the treating physician and therefore remain untreated [713] [714].

Head and neck cancer patients' mental health deteriorates more frequently over time than other cancer patients [715], which is probably due to the fact that they are less likely to ask for social support and therefore receive less support. It is therefore particularly important here that the doctor and the treating team actively and repeatedly enquire about the patient's psychological stress [716]. This can be done in personal discussions and/or with the help of computer-based routine screening during follow-up care [717].

Psycho-oncological care has been shown to help improve the psychological well-being of cancer patients and increase their quality of life [718]. All patients with increased psychological stress should therefore be offered such care, for example with direct referral to a psycho-oncologist. Psycho-oncological care should not only be offered during the patient's inpatient treatment, but should also be considered during aftercare. It should be based on the S3 Guideline: "Psycho-oncological diagnostics, counselling and therapy" [706].

The treatment phase and the disease- and therapy-related effects on physical, psychological and social functioning often lead to dramatic changes in the social lives of people with cancer and their caregivers.

The stresses and strains include

• Family and social stresses (e.g. partnership conflicts, conflicts in dealing with the disease and the consequences of the disease, care needs of the affected person or even uncared for relatives, loss of social contacts in the circle of friends or leisure associations)
• Occupational changes (problems at work, limited and inadequate professional performance up to the loss of earning capacity and job, difficulties in finding a new job)
• Financial burdens (e.g. due to reduced income, additional payments for health services, travel costs)
• In connection with medical rehabilitation options, it is important to emphasize the offers of medical-occupational orientation in rehabilitation for the targeted, interdisciplinary promotion of occupational integration. It enables patients to test the skills they need for their profession and to train any deficits in a targeted manner [719].

The treatment phase and the disease- and therapy-related effects on physical, psychological and social functioning often lead to dramatic changes in the social lives of people with cancer and their caregivers.

These non-medical aspects and stresses should also be taken into account during the initial process of providing information about the tumour disease, the treatment options and the course of the disease, as described above. In particular, this includes the doctor pointing out the additional contacts in the various areas and the wide range of support options.

Depending on the need for rehabilitation and the patient's ability and willingness to undergo rehabilitation, primary therapy should be followed by inpatient rehabilitation in the form of follow-up treatment (FUT). The consequences of a mostly multimodal therapy consisting of surgery, radiation and chemotherapy and other drug therapy procedures are to be treated. The aim of medical rehabilitation is to promote the patient's self-determined participation in the sense of an independent and responsible social life despite health and functional limitations and to enable reintegration into working life.

Follow-up treatment is prescribed by the attending physicians as part of the inpatient stay or as part of outpatient tumour aftercare. The social services of the acute hospitals provide advice and initiate rehabilitation.

Patients with oropharyngeal or hypopharyngeal cancer who have received radiotherapy/radiochemotherapy should start rehabilitation at the earliest six weeks after the end of radiotherapy. Although the acute skin changes diminish shortly after treatment, lymphoedema increasingly develops in the skin and mucous membrane of the head and neck area. It is fully developed after six weeks and must be treated with lymphatic drainage. As a result, the period for commencing FUT after radiotherapy/radiochemotherapy is extended to up to 10 weeks. In individual cases, FUT can be started earlier as a complex medical inpatient measure with swallowing tests and training), nutritional stabilization, lymph drainage, exercise therapy and adapted medication and pain therapy.

Depending on the extent of the symptoms and functional impairments, the patient has the option of repeating the inpatient rehabilitation measure.

Prehabilitation

In recent years, the term prehabilitation has found its way into the literature and is arising also in cancer therapy. Prehabilitation is the targeted preparation for an operation or a debilitating therapy. While classic rehabilitation supports patients in their recovery following a stay in hospital, prehabilitation is intended to have a positive influence on this in advance. Ideally, prehabilitation combines various components that are individually tailored to the patient: primarily physiotherapy, muscle and breathing training, but also weight loss and nutritional therapy. Initial studies have shown the positive effects in endoprosthetics, for example. In patients who received a new hip or knee joint, pain was halved after four weeks of training. Prehabilitation is still in its infancy in Germany and is only widespread for hip and knee replacements.

In the context of oncological therapy, current studies show clear evidence of the positive effects of more intensive preparation for surgery in patients with frailty and malnutrition. Both factors [720] [721], have a significant influence on peri- and post-therapeutic morbidity and oncological functional outcome. More than a third of hospitalized patients suffer from malnutrition, far more frequently than long assumed [722]. The aim of oncological prehabilitation is therefore to identify malnutrition, frailty and anaemia in particular and to improve them before the start of therapy [723].

The increased therapy-related morbidity risk of increasingly elderly and multimorbid head and neck tumour patients is well known [144] and can be recorded as a frailty score. The topic is currently also finding its way into the clinical consideration of head and neck cancer, so that the S3 guidelines on oral cavity and laryngeal carcinoma do not yet contain any clear recommendations on targeted pre-therapeutic preparation, apart from the advice to take early measures to ensure adequate nutrition [1][2]. Recommendations largely focus on improving therapies (e.g. minimally invasive and reconstructive surgery, intensity-modulated radiotherapy, studies on therapy de-escalation) and on classic rehabilitation measures. In Germany, professional swallowing therapy is usually only carried out when symptoms occur, as part of a specific rehabilitation measure, usually postoperatively or following radio(chemo)therapy [724] [664] [725] [726].

Head and neck tumour patients are particularly susceptible to malnutrition due to the location of the tumours in the upper aerodigestive tract and the resulting dysphagia, as well as the risk factors of tobacco and alcohol. Possible serious consequences of dysphagia include malnutrition, the risk of aspiration pneumonia and the associated increased mortality, social isolation and loss of quality of life [663] [727]. The prevalence of dysphagia among head and neck tumour patients is up to 80%, depending on tumour location and extent [728].

Study results increasingly indicate that head and neck tumour patients benefit if dysphagia therapy begins before or during radiotherapy [729]. Preventive exercises can reduce the consequences of pre-existing dysphagia or dysphagia that occurs as a result of therapy [730]. In summary, the studies available to date show that active exercises to improve swallowing function immediately after radio(chemo)therapy lead to demonstrably better outcomes, even if evidence of long-term benefit is still lacking. Collectives with primarily surgically treated patients have hardly been studied to date with regard to the effectiveness of prehabilitative measures, nor have suitable criteria for patient selection been developed. The first clinical implications are shown by the systematic introduction of frailty scores [144] and the associated growing awareness of individualized therapy preparation. This subtext is intended to raise awareness of the topic. Specific recommendations cannot yet be made within the framework of this guideline.

Oro- and hypopharyngeal carcinomas can lead to swallowing difficulties with significant weight loss and aspiration with consecutive pneumonia even before the diagnosis is made. Surgical therapies and adjuvant radiotherapy or radiochemotherapy cause relevant swallowing problems with the risk of serious malnutrition and/or aspiration pneumonia, just like primary radiotherapy or radiochemotherapy. Early nutritional support must therefore be ensured for all patients with oropharyngeal and hypopharyngeal carcinomas. Repeated nutritional counselling with dietary modifications contribute to the success of treatment and quality of life in patients with head and neck cancer who have difficulty swallowing. Risk factors for prolonged postoperative dysphagia include pharyngotomy, resection at the base of the tongue, reconstruction with a pectoralis major flap, advanced tumour growth, alcohol abuse and radiation and radiation chemotherapy [732].

In uncomplicated cases, nutrition can be provided with soft or liquid high-calorie food, possibly supported by local and systemic analgesic therapies, provided the patient does not aspirate. If these measures are not sufficient, nutrition must be provided via a PEG or nasogastric tube or parenterally. If it is expected that oral feeding will no longer be possible for at least several weeks, the PEG tube has proven to be safe and effective [733] [734] [735]. A retrospective comparison of a PEG and a nasogastric feeding tube showed greater impairment of swallowing and speech and poorer wearing comfort with the nasogastric feeding tube [736]. In a small randomized study (n=57), early swallowing training led to a significant reduction in the duration of PEG tube placement [737]

The benefit of prophylactic placement of a PEG tube in patients at high risk of severe swallowing problems compared to placement on demand was investigated in 3 small randomized trials (n=70- 134), most of which had received primary or adjuvant radiochemotherapy [738] [739][740]. The studies consistently showed no significant benefit of prophylactic PEG placement in terms of weight development, quality of life and oncological outcomes. The complication rate of PEG placement was low in all studies and did not differ between the study arms. A need for tube feeding was found in 86% - 90% of patients in the control arms of the studies. The longer dependency on tube feeding reported in retrospective comparative studies [736] due to prophylactic PEG placement was not confirmed in the randomized studies.