Liverpool and Merseyside H&N Cancer QOL Research Fund

2010 QOL Project

Patient and Carer Treatment Burden

This year we are looking to get enough funding to do research on patient and carer experience / treatment burden of chemoradiotherapy treatment compared to surgery and radiotherapy. This project requires 40K to fund a research assistant for 18 months.

Background to study: Treatment for cancer of the head & neck (oral. oropharynx & larynx) has advanced significantly with modern chemoradiation protocols and radical surgery combined with reconstructive techniques. However these treatments carry a lot of acute toxicity in addition to long-term morbidity. This is particularly the case in patients presenting with advanced disease, around 40% of patients, who for in the past it was not really possible to treat them with curative intent. Overall survival and in particular disease specific survival has improved and more patients and carers than ever before are living with the aftermath of treatment. The personal, social, medical, psychological & economic impact on both patient and carer burden can be substantial, as they have cope with life during and after treatment. The social background of many patients with head and neck cancer and its treatment means that carers have a major role in supporting patients through treatment. Although this is well recognized by the clinical team there has been a distinct lack of research in this area. This needs to be urgently addressed as family caregivers have their own needs necessitating support, often experiencing higher levels of distress & similar demands from the disease as the patient. Carer depression has been found to correlate with that of the patient, whilst speech problems, the presence of feeding tubes & disrupted daily life schedules are significant predictors. Knowledge of how carers cope, what additional support is needed & at what time point in the treatment journey is limited. This information will inform the assessment & tailoring of appropriate interventions that can more adequately meet individual carer's needs.

Primary aim: To identify the impact of head & neck cancer treatment on carers during the treatment phase of illness Secondary aim: i) To highlight potential time points of 'treatment burden' for carers during the treatment journey ii) To inform the development of a care pathway to guide appropriate assessment & interventions specifically for carers.

Study design and settings: A 18 month study using mixed methods approaches including interviews, health survey questionnaire & self reported diaries to explore the carer's experience of the head & neck treatment journey. This approach will enable the exploration of carers' experiences & identify any potential treatment burden & time of occurrence & highlight any differences in the treatment modalities. . Interviews will be conducted in the carer homes (hospital setting if preferred).
Timeline: annum: 18 month research programme (refine study design, ethics, study data collection, analysis, write up, submission for journal, carepathway development).

Outcome measures: The data will inform the development of a care pathway highlighting specific time points of carer stress & concerns. This will guide professional interventions, anticipatory planning & preventive approaches toward individual carer need during this treatment journey through the development of a care pathway. This study will offer preliminary development of a care pathway which would require evaluation prior to adoption in other oncology settings (future study).

Funding: Research Assistant Grade 5 (pay point 19) £26715.21 per annum