What is quality of life?

Quality of life is a multifaceted construct comprising many different aspects leading to numerous definitions. The World Health Organization defines quality of life as an “individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns”.Reference Saxena and Orley ² Quality of life comprises a person's physical health and functioning, psychological state, level of independence, social relationships, occupation and finance, and personal beliefs. There is a complex relationship between factors such as the characteristics of the individual with respect to symptoms, personality, motivation, value preferences and the characteristics of the environment such as psychological, social and economic support.Reference Saxena and Orley ² The term ‘health-related quality of life’ (HRQoL) is more disease specific and allows the healthcare professions to focus upon the assessment of the impact of the disease and its treatment on the physical, psychological and social aspects.Reference Wilson and Cleary ³

Why should we measure quality of life?

Health-related quality of life evaluation gives an indication of how the patient perceives the impact of their cancer and its treatment. This information can be used to give the patient and their family an indication of ‘what will I be like’.Reference Rogers, Hogg, Cheung, Lai, Jassal and Lowe ¹ This patient reported outcome allows the health professional an opportunity to reflect on the patient's reaction. Individual patient-rated outcomes can often differ quite markedly from clinician-rated scores. Health-related quality of life measurement has a role in evaluating treatment outcomes, helping to define treatment protocols, as primary or secondary outcome(s) of clinical trials, providing additional information to assist in individual decision-making processes, to support the identification of poor outcomes, so that intervention and support can be considered.Reference Rogers ⁴ Checklists such as the Patients Concerns Inventory help patients express unmet concerns and can be used as part of holistic needs assessment.Reference Rogers, El-Sheikha and Lowe ⁵ A better understanding of patients' perception helps facilitate improvements in aftercare and serves to drive clinically relevant outcomes research.Reference Rogers ⁶ Also patient-reported outcomes should be part of national outcome datasets.Reference Rogers, Kanatas, Kazi, Rhys-Evans and Harrington ^{7 –} Reference Laraway and Rogers ⁹

It is appreciated that there are many potential difficulties in assessing HRQoL in clinical practice.Reference Rogers, Ahad and Murphy ^{10 ,} Reference Aaronson, Bullinger and Ahmedzai ¹¹ Perhaps the biggest challenges are: (i) the burden of administration and processing of the questionnaires; (ii) the reality that patients tend to adapt over time, so that expected differences between treatments might not be as significant as anticipated; (iii) that HRQoL data are weighted to survivors; and (iv) that there is little evidence of agreed standards of analysis and reporting. Another barrier is the lack of evidence as to when HRQoL should have a major role on treatment decisions, or an important role simply as an additional factor, or perhaps where it has relatively little value. Hence, healthcare professionals can unrealistically rely too much on the value of HRQoL in certain clinical situations and this can lead to frustration and a perceived lack of benefit in the HRQoL process.

How should it be measured?

The commonest way to measure HRQoL is by patient self-completed questionnaire (quantitative) although other methods include open and semi-structured interview (qualitative).Reference Aaronson, Bullinger and Ahmedzai ¹¹ There is no gold standard questionnaire and each has its own unique features and merits.Reference Kanatas and Rogers ^{12 –} Reference Kanatas and Rogers ¹⁴ All questionnaires are inherently limited by the range of issues addressed, the wording used, and the scoring systems. The choice of questionnaire depends on the reason for using it, e.g. research, audit, integrated into routine clinical practice or to assist in the evaluation of a specific functional outcome.Reference Rogers and Lowe ¹⁵

Questionnaires can be used either cross-sectionally or longitudinally. Longitudinal data from pre-treatment has the distinct advantage of allowing the measurement of change and also recording HRQoL during the different phases of treatment. It is a logistical challenge to ensure patients self-complete questionnaires before treatment and at regular intervals subsequently. Cross-sectional evaluation is simpler to conduct and easier to achieve larger patient numbers when stratifying for patient characteristics. Questionnaires can be divided into four main categories: (i) those asking on a range of broad issues not specific to cancer; (ii) those addressing issues common to all cancers; (iii) questionnaires with items specific to head and neck cancer; and (iv) those questionnaires that focus in detail on a particular aspect of head and neck function.Reference Laraway and Rogers ⁹

With changes in treatments e.g. epidermal growth factor receptor inhibitors as part of chemotherapy, so existing HRQoL questionnaires might need to be modified to include additional side effects and functional deficits. As the relationship between unmet need and HRQoL becomes more clearly understood, further consideration needs to be given as to how, within the financial constraints of cancer care, questionnaires can be more easily integrated into routine practice. Advances in technology will assist in the collection and inclusion of patient-reported outcomes. The almost ubiquitous ownership of mobile phones allows developers in partnership with clinical researchers to construct ‘Apps’ that can send alerts to patients for HRQoL updates on certain features. This is an exciting area that is in its infancy but holds great promise to enable a more comprehensive, flexible and frequent opportunity to explore, study and intervene in patient HRQoL.

What are the key issues?

There are a considerable range of issues that impact on the HRQoL outcomes following head and neck cancer. This section makes only very brief comment on the type of issues involved (listed in alphabetical order). There are several review articles that give additional information.Reference Kanatas and Rogers ^{12 –} Reference Kanatas and Rogers ^{14 ,} Reference Ojo, Genden, Teng, Milbury, Misiukiewicz and Badr ^{16 ,} Reference Rogers, Watkinson and Gilbert ¹⁷ At the present time there tends to be a lack of long-term outcomes reported in the literature. Also newer treatment strategies are under reported given the time necessary to get adequate HRQoL information.

• • Carer: there is a need to promote positive carer support; carers can underestimate the HRQoL outcome

• • Comorbidity: patient perception of disability, rather than the extent and severity of disease is of major influence in head and neck HRQoL

• • Coping: social support seeking is beneficial whilst avoidance is bad

• • Dental status: eating – social interaction and is linked to coping

• • Disfigurement: appearance, body image, not only an issue in surgical patients

• • Emotion: anxiety is high pre-treatment; mood disturbance and/or depression is treatable

• • Family and children: the impact of cancer affects family and community

• • Fatigue: common in the first year post-treatment; poor sleep; low energy

• • Fear of recurrence: unpredictable by clinical characteristics; does not lessen over time; and high levels predict higher consumption of formal healthcare.

• • Financial and work: employment; benefits; cost of treatment and follow-up; and retirement

• • Function: pre-existing comorbidities; problems of combination treatment modalities – impact on recreation, hobbies, interests. In general, the less the consequence of the cancer and its treatment in terms of social function the better the HRQoL outcomes

• • Fungating wounds: difficulties in palliation in head and neck; relatively few published papers

• • Information: varying amounts, in various ways, at different times the importance of communication skills and consistency of contact with named health professional for duration of clinical treatment; also access to patient and career support groups

• • Intimacy: sexuality, worst in the younger patient as an unmet need

• • Lifestyle choices: smoking; alcohol abuse

• • Nutrition: low weight; diet; gastrostomy feeding

• • Oral rehabilitation: chewing and/or eating – realistic expectations of rehabilitation

• • Osteoradionecrosis: associated with pain; trismus; poor HRQoL; and nutrition problems

• • Pain: need for opiates; poor sleep; linked with depression

• • Personality: optimism and HRQoL and survival; high neuroticism poor HRQoL

• • Self-esteem: social concerns; reactions of friends, wider community, work colleague; low self-esteem associated with poor HRQoL

• • Sociodemographic: deprivation and social support; age; and finance

• • Speech: complex function; various aspects; laryngeal speech outcomes; isolation

• • Swallowing: nutrition; social; presence of feeding tube most significant to HRQOL

• • Shoulder: shoulder discomfort and neck tightness; debate around avoiding a neck dissection or carrying out a selective dissection

• • Trismus: difficulty in mouth opening associated with diet, social, and dental health

• • Unknown: clinical art of the individual patient not a precise science

• • Xerostomia: dry mouth has a profound impact on social function and HRQoL, intensity modulated radiation therapy should be used whenever feasible.

Examples of how HRQoL might change practice

Health-related quality of life is a factor that is weighed against treatment burden and toxicity, and also any survival benefit between treatments. In the three common head and neck cancer sites, HRQoL might be a driver for evolving strategies alongside other drivers such as survival, function and healthcare cost. Examples are described below.