Supportive care

These guidelines relate to the supportive care needs of patients diagnosed with head and neck cancer at all stages in the care pathway; pre-treatment (including prehabilitation), during treatment and post-treatment (including rehabilitation), and include palliative/end of life care. Supportive care refers to a wide-range of approaches that include activities, interventions and information resources that support individuals to recover or adjust to achieve their full potential.

It aims to support equity in the quality of care received by people with head and neck cancer.  

Supportive care includes assessing and managing holistic needs of patients (and their families/carers) from diagnosis to long-term survival or end of life care. Good quality supportive care requires the collaboration of primary care, secondary care, the community and third sector. Holistic needs can be met only by a multidisciplinary team and approach to care. 

Clinical Nurse Specialists (CNS) have the pivotal liaising and coordinating role in the delivery of supportive care to patients with head and neck cancer. 

There are seven areas of supportive care for patients with head and neck cancer included in these guidelines:

• Patient information 
  
  
• Nutritional management 
  
  
• Speech, voice, and swallowing 
  
  
• Physiotherapy, exercise and occupational therapy
  
  
• Psychological support 
  
  
• Symptom control  
  
  
• Risk behaviour support.

Providing quality patient information is an important part of supportive care.  

• Provide information in accessible written / digital format (including language translations if required). It is important to consider developing locally appropriate and clearly apparent/documented communication channels with patients unable to communicate (e.g. with patients post laryngectomy).
  
  
• Consider providing patient information can be provided across the care pathway including related to diagnosis, treatment, supportive care (including locally available peer social support groups / third sector support organisations) and follow-up, and on palliative care. 
  
  
• Consider signposting / referring to local peer-social support groups / third sector support organisations that can also provide patient information on a range of issues.

Pre-habilitation

• Offer all patients nutritional screening with a validated tool (e.g.Malnutrition Universal Screening Tool: MUST).

• Consider starting prehabilitation as early as possible and in advance of any cancer treatment (multi-modal including exercise/activity, nutrition and psychological support).

• For patients assessed at high nutritional risk nutrition, offer referral to a specialist dietitian to optimise nutritional status before cancer treatment. 

• For radical patients assessed at high nutritional risk, consider proactive and aggressive nutritional support prior to planned surgery and/or radiotherapy. The risks of delaying oncology treatment should be weighed against the risks and potential complications that can arise for people with malnutrition undergoing treatment. 

• Consider a nutritional plan with assessment and nutritional intervention, which includes specified nutritional aims and outcomes, and with a plan to review progress against outcomes.  

• Consider prophylactic gastrostomy placement in patients at risk of requiring long term enteral feeding – taking into account factors including performance status, baseline nutritional status, tumour site/stage, pre-existing dysphagia, potential impact of planned treatment, and local support services (such as radiology, speech and language therapy, along with community services).
  
  

Rehabilitation

• Offer continued screening for malnutrition and offer nutritional support as a continuum of prehabilitation. This may include fortification of diet, nutritionally complete oral nutritional supplements (ONS), enteral nutrition / feeding, and parenteral nutrition. Preferred option will account for factors including nutritional needs, tumour site and stage, treatment, patient wishes and local protocols.
  
  
• Consider ongoing nutritional support especially in relation to preventing weight loss in the context of treatment related side effects (e.g. dysphagia, trismus, difficulty chewing, dental problems, xerostomia and mucositis). 
  
  
• For patients who have completed rehabilitation and are not at risk of malnutrition, consider offering cancer prevention and healthy eating advice.  
  
  

Palliative care

• In patients undergoing palliative management, continue to screen for malnutrition and consider nutritional assessment and support (including the need for artificial feeding and / or gastrostomy tube placement) with the context of risk, benefit, and prognosis.  
  
  
• Consider ongoing nutritional assessment and input in patients undergoing palliative management to mitigate potential dietary related side effects of medications and optimise quality of life. 

Prehabilitation

• Offer Speech and Language Therapy (SLT) communication and swallowing assessment for all patients where there are existing or anticipated difficulties.  
  
  
• Consider prehabilitation SLT strategies. 

• Offer information on SLT role, on relevant SLT advice, and explain SLT follow up post treatment.
  
  
• Consider offering contact with suitable previous patient volunteer.
  
  

Rehabilitation

• During and post treatment offer assessment of aspiration, swallowing, and communication; and offer risk modification support for clinical concern.
   
• During radiotherapy, consider SLT to support rehabilitation strategies including communication, oral intake, and prophylactic exercises.
  
  
• During adjuvant radiotherapy, post-laryngectomy, offer SLT support for monitoring and advice on: stoma size, stoma protection and HME product selection, communication issues, and other issues related to the tracheoesophageal valve.
  
  
• Following surgery, consider: early and regular post-op SLT input for communication support, eating/drinking/swallowing support (as clinically appropriate); secretion management and tracheostomy weaning.   
  
  
• In patients who have had laryngectomy, request SLT support for: early post-op communication strategies, Heat Moisture Exchange (HME) product selection and use, stoma and valve (voice) prosthesis self-management/care, neck breather safety awareness, eating, drinking and swallowing, and emotional impact of surgery. Consider ongoing SLT rehabilitation with consideration of FreeHands products and self-changing valve (voice) prosthesis.
  
  
• Post treatment, consider SLT assessment of eating, drinking and swallowing (potentially including instrumental assessment) to identify aspiration risks, and to inform clinician and patient decision making on oral intake and support swallowing rehabilitation. 
  
  
• Consider SLT advice to support late treatment effects regarding swallowing and communication.
  
  

Palliative care

• Consider ongoing SLT assessment and advice to support patients undergoing palliative management including in relation to communication, and eating, drinking and swallowing.
  
  
• For patients who have undergone laryngectomy surgery, consider SLT assessment and support for management of stoma, including stoma protection and HME products.

Prehabilitation

• Consider referral to physiotherapy for assessment and appropriate exercises prior to treatment (e.g. general cardiovascular exercises; and neck and shoulder range of motion and strength exercises – particularly if limited pre-treatment or treatment will be a significant undertaking and likely to lead to significant fitness decline following treatment.   
  
  
• Consider, providing advice on preparation for treatment with regard to work, home, and social activities.
  
  

Rehabilitation

• Consider assessment and provision of individualised programme with the aim of regaining mouth opening, neck and shoulder range of motion at earliest safest opportunity. 
  
  
• Consider provision of general exercise programme to meet needs of patients hospital and post discharge goals. 
  
  
• Consider assessment for and provision of advice on facial nerve palsy, goal setting, pacing, pain management and limb positioning. 
  
  
• Consider assessment of physiotherapy referral following discharge and during follow-up.  
  
  
• Consider referral to occupational therapy to support strategies to return to participation in community and life roles (activities of daily living) and support to return to work.   

Prehabilitation

• Consider psychological screening (e.g. via Patient Health Questionnaire-4: PHQ-4 tool) and referral for psychological assessment and support following The Psychological Therapies and Support Framework for People Affected By Cancer. 

• Consider signposting / referring to local peer-social support groups / third sector support organisations.  
  
  
• Where radical surgical resection and reconstruction is planned, consider a clinical psychological referral in relation to psychological sequalae of impaired function and facial aesthetic outcomes.   
  
  

Rehabilitation

• Consider ongoing psychological screening during follow-up period and appropriate referral / signposting where indicated. 

• Consider screening for fear of recurrence (e.g via FCR-4 brief screening tool), and where indicated consider delivering a supportive conversation and signposting / referring to local peer-support groups / third sector support organisations.  
  Consider referral for clinical psychological assessment and support for those with more severe fear of recurrence. 

• Consider referral for clinical psychological assessment and support for those with more severe fear of recurrence. 

Prehabilitation

• Offer screening patients for smoking and offer referral and support via smoking cessation services.  
  
  
• Offer screening of patients for alcohol consumption support and appropriate alcohol detoxification programme. 
  
  
• Consider assessing patients for substance / drug use and referring to local drug support (addiction/recovery) services.  
  
  

Rehabilitation

• Offer screening patients smoking cessation and offer referral and support via smoking cessation services. 
  
  
• Offer screening of patients for alcohol consumption support e.g. via signposting / referral to local clinical alcohol support services or third sector organisations. 
  
  
• Consider offering ongoing substance / drug use support via referring to local drug (addiction/recovery) support services.   

Throughout the care pathway assess and manage the symptoms associated with head and neck cancer and its treatment. 

• In people with incurable head and neck cancer offer care following the Scottish Palliative Care Guidelines pathway. 
  
  
• In relation to palliative care, it is important to acknowledge that there is significant variation in how primary and secondary healthcare services are configured and resourced across Scotland, and that there is further variation in patient-social support groups and third sector organisations. A “one size” model is therefore not possible or feasible.