Short summary

Nutrition impact symptoms affecting dietary intake, nutritional status and quality of life are frequent in head and neck cancer (HNC) survivors and may occur years after completion of treatment. Posttreatment nutritional rehabilitation improves nutritional status and quality of life in some HNC survivors. This project will elucidate how health professionals can distinguish between HNC survivors who will benefit from targeted posttreatment rehabilitation of nutrition impact symptoms, and HNC survivors who will get the same effect from a less specialised intervention.

Rationale

Due to the location of the tumour HNC patients are at high nutritional risk at the time of diagnosis. Many patients develop further weight loss and malnutrition during their treatment consequently affecting their clinical outcome and physical function with studies reporting an incidence of critical weight loss (defined as a weight loss >5 %) ranging from 19 % to 88 %. Nutrition impact symptoms are defined as symptoms that affect the dietary intake and hence nutritional status, and may include physiological symptoms such as dysphagia (swallowing difficulties), taste alterations and dry mouth as well as psychological, existential and social problems. Nutrition impact symptoms as consequences of the HNC disease or the treatment are frequent and the onset of nutrition impact symptoms can occur years after completion of treatment.  Nutrition impact symptoms can have great consequences for the nutritional status and quality of life of the HNC survivor.

Studies show that posttreatment nutritional rehabilitation can improve nutritional status and quality of life in some HNC survivors, and it is recommended that nutrition is a part of the rehabilitation services in Denmark. However, there is great variation between nutritional rehabilitation services in different municipalities, ranging from individual nutritional counselling to non-personalised, generalised dietary advice, regardless of cancer type. Furthermore there are currently no systematic data from the municipalities on the time interval from completion of treatment in which cancer survivors are offered rehabilitation services. Since nutrition impact symptoms can occur years after completion of treatment so can the need for rehabilitation services.

As part of posttreatment control the hospitals are obliged to offer a needs assessment at end of treatment and refere patients with need for nutritional rehabilitation to the municipality service. The general practitioners and the municipalities should continuously follow up during and after treatment and offer a reassessment if needed. 

The Danish Health Authority differentiates between two levels of assessment: A needs assessment is the overall, preliminary assessment of the cancer patient's or cancer survivor's potential need for rehabilitation. If a need for rehabilitation is identified a more thorough assessment should be performed by skilled professionals in the relevant field. Despite the focus on needs assessment in the disease management programmes there is limited evidence on which subgroups of HNC survivors would benefit from, and should be offered posttreatment nutritional rehabilitation, and which HNC survivors require only the non-personalised, generalised dietary advice. Numerous tools have been developed to identify malnutrition in HNC patients. However, few tools are able to identify HNC survivors who will benefit from nutritional rehabilitation. Hence, further research in this area is needed.

The main research question of the project is: 

• How can health professionals in municipality settings identify curatively treated HNC survivors with need of and benefit from posttreatment nutritional rehabilitation?

The main research question will be answered through four substudies with associated subquestions.

• A systematic literature review on existing nutrition screening and assessment tools for cancer patients and survivors
• A pilot study with focusgroup interviews with HNC survivors on the effect of nutrition impact symptoms on their quality of life and their perceptions of a diagnose specific rehabilitation programme.

• A nationwide survey to determine the prevalence of nutrition impact symptoms in HNC survivors and their effect on quality of life
• A cross-over randomised controlled trial to test whether selected nutrition screening or assessment tools can identify HNC survivors who will benefit from targeted posttreatment rehabilitation of nutrition impact symptoms

Description of the cohort

Head and neck cancer survivors.

For the survey and the following RCT we will recruit patiants curatively treated for cancer in the oral cavity, pharynx and larynx within 1-5 years before inclusion.

Data and biological material

Questionnaires, focus groups, register data, anthropometric measurements, physical tests

Collaborating researchers and departments

REHPA – Knowledge Centre for Rehabilitation and Palliative Care, Department of Oncology, Odense University Hospital, and Department of Clinical Research, University of Southern Denmark,

• Head of Centre, Professor, Chief Physician Ann-Dorthe Olsen Zwisler
• Associate Professor Karin B. Dieperink, RN, MCN, PhD

Department of Nursing and Nutrition, University College Copenhagen

• Senior Associate Lecturer Anne Marie Beck, PhD

Department of Otorhinolaryngology, Head and Neck Surgery & Audiology, Rigshospitalet

• Senior Consultant, Associate Professor Irene Wessel, PhD