QOL issues for patients with H&NCQOL issues for patients with H&NC

Dr Cherith SempleMacmillan CNS – Head

& Neck Cancer

Despite an impressive list of advancements inmedicine we cannot forget the other importantneeds of patients, in particular emotional well-being

(Fallowfield, 1990)

Must consider qualityquality of

life as well as quantityquantity of life

Challenges of H&NCChallenges of H&NC

Is more than cure and survival

What is Quality of Life (QOL)?What is Quality of Life (QOL)?

• Not a new concept – dating as far back as Aristotle384 – 322BC

• A somewhat vague term

• Dictionary describes quality• Dictionary describes quality

as the degree of excellence

• Subjective - different things to different people

World Health OrganisationWorld Health Organisation

Definition of QOL

‘individuals perception of their position

in life in the context of culture and

value systems in which they live

and in relation to their goals,

expectations, standards and concerns’ (1998)

Leroy ALeroy A SchallSchall (1954)(1954)

‘It is hard properly toevaluate humansuffering: the blind saythey would rather beblind than deaf; whilstblind than deaf; whilstthe patient without avoice considershimself fortunate thathe is neither blind nordeaf’.

Who should rate QOL?Who should rate QOL?

• Research suggests that there are wide discrepanciesbetween patients’ and doctors’ rating of QOL

• Patients feelings, values, or• Patients feelings, values, oropinions cannot be assumed

• Now generally recognised that patients are in the bestposition to rate their QOL

How can QOL be measured?How can QOL be measured?

• Interviews or questionnaires

• Use of validated instruments/questionnaires

- Simple/suitable for target population

- Brief but comprehensive

- Valid and reliable

• Types of questionnaires• Types of questionnaires

- general/global

- disease specific

- domain specific

HealthHealth--related QOLrelated QOL

• Health-related QOL (HRQOL) a specificsubset of QOL (Rogers et al., 2010)

Treatment –related symptoms

Psychological aspectsPsychological aspects

Social interaction

Physical function

• Not the same as toxicity

HRQOLHRQOL -- head and neck questionnaireshead and neck questionnaires

Often as outcome measures in clinical trials

No gold standard

EORTC QLQ head and neck 35 (H&N35)EORTC QLQ head and neck 35 (H&N35)

FACT H&N

UW- QOL v 4

Development of HRQOL questionnairesDevelopment of HRQOL questionnaires

Patient and clinician can speak the same language

‘Questionnaires have given us a tremendous structured‘Questionnaires have given us a tremendous structured

insight into the patients perception of having H&NC andinsight into the patients perception of having H&NC and

the impact of treatment’the impact of treatment’

(Rogers 2006)(Rogers 2006)

Use in clinical practiceUse in clinical practice

• Effective in helping patient’s identifypreferred outcomes or treatment goals

• Monitor response to treatment

• Help direct appropriate support

Why is QoL in H&N important?Why is QoL in H&N important?

• HNC patient requirements often over andabove other cancer pts

• Different treatments options with equivalentsurvival rates

• Late-effects of treatment

QOL in successfully treated H&NC ptsQOL in successfully treated H&NC pts

• Successfully treated H&NC patientsusually report a fairly good QOL BUTreport significant functional changes(Aastard et al. 2007)

• What are the FUNCTIONALCHANGES & CHALLENGES?

Domains are interrelatedDomains are interrelated

Functional

PsychologicalPsychological

Social

Challenges of H&NCChallenges of H&NC

Location –‘it’s in your face’

Function –Function –‘it affects what I eat

and how I speak’

Factors affecting QOL for patients with H&NCFactors affecting QOL for patients with H&NC

• Disfigurement

• Dysfunction of daily activities, e.g.

eating and drinking – PEG tubes

speech

• Pain

• Shoulder dysfunction• Shoulder dysfunction

• Occupation

• Sexuality

• Depression and anxiety

• Fatigue

• Fungating wound

DisfigurementDisfigurement

– Enormous importance placed

on the head and neck area

People with facial– People with facial

disfigurement

feel stigmatised in society

Disfigurement and adjustmentDisfigurement and adjustment

• Most influential factor is not degree of disfigurement

BUT

Importance and meaning attributed to appearance (Ong et al 2007)

• Personality – optimism

• Cognitive processes – fear of being negatively viewed

• Preoperative expectations

• Gender

• Social support

• Age

Eating and swallowingEating and swallowing

• Mucosal and soft tissue damage

– Fibrosis

– Lymphoedema

• Trismus

• Stricture• Stricture

• Dentition

• Xerostomia

• Mucosal sensitivity

• Altered taste

Eating and swallowingEating and swallowing

Many patients with intraoral reconstruction require amodified diet

– 72% of patients with cancer to their oropharynx required a modified diet(Beeken and Calman, 1994)

Inhibits normal socialisation- 67% feelings of shame while eating (de Boer et al., 1995)

- 25% would not eat out following treatment (Bundgaard et al., 1993)- 25% would not eat out following treatment (Bundgaard et al., 1993)

Appears to be a correlation between eating

and quality of life (Semple et al., 2006)

Eating and swallowingEating and swallowing

• Long-term feeding tube – very strongpredictor of poorer QOL (Terrell et al. 2004)

• Combined chemoXRT – can lead topersistent laryngeal oedema causingdysphagia and aspiration poorer QOL(Platteaux et al. 2010)

XerostomiaXerostomia

• Impaired lubrication of oral tissues

• Impaired food bolus preparation

• Buffering capacity compromised -increased risk of dental caries

• Oral flora become more pathogenic

• Demineralization of teeth and tooth decay

• Periodontal disease can accelerateOral Complications of Chemotherapy and Head/Neck Radiation (PDQ).

National Cancer Institute. 2007;1-6.

• Dental caries fracturesand chipping

• Leads to dental loss

• Dental loss leads toaltered intakealtered intake

• Altered intake leads to

dietary inadequacies

Shoulder dysfunctionShoulder dysfunction

• Worse QOL following neck dissection(Chandu et al., 2006)

• Fibrosis causes stiffness

» Loss of function

» Pain

• Especially prevalent after radical ND• Assessory nerve is severed and leads to

denervation of trapezius muscle

» Motor dysfunction

» Shoulder malignment

» Pain

PainPain

Can occur as a consequence of the disease or from thetreatment

Often associated with recurrence (Scharpf et al. 2009)

Augmented because of the vital functions within the headand neck areaand neck area

•

PainPain

48% of patients had pain at diagnosis,25% and 26% at 6 and 12 months

respectively (Chaplin and Morton, 1999)

Higher levels of pain - associated withdepression and poorer QOL (Duffy et al. 2002,

Horney et al. 2011)

Oral Pain in HNCOral Pain in HNC

Logan HL, J Pain: 2010

Current smokers report higher spontaneousand functional oral pain as well as painand functional oral pain as well as painrelated interference (p value’s <.001)

Employment issuesEmployment issues

Returning to the usual place of work can pose some

difficulty

70% of laryngectomies were employed at time ofdiagnosis compared to 34% afterwards

(Lehmann and Krebs, 1991)

HNC patients may need to find alternative employment,reduce working hours post-treatment

(Taylor et al., 2004, Lui 2008)

Employment issuesEmployment issues

• Multi-modality treatment greater impact(Vartainian et al 2006)

• HNC patients are amongst those athighest risk for work-related disability orhighest risk for work-related disability orquitting their work (Short et al 2005)

• Financial implications

SexualitySexuality

Sexual dysfunction is common

in patients with HNC

Due to

- altered appearance

- dry mouth (xerostomia)

- coughing and mucus

- fear of failure

- unwilling partner

- fatigue

- depression

- pain and inability to relax

How are psychosocial problems manifest?How are psychosocial problems manifest?

• Depression

• Social anxiety

• Sexual difficulties

• Reduced self-esteem and self-image

• Generalised sense of reduced QOL• Generalised sense of reduced QOL

• Alcohol misuse

• Suicide risk (particularly high)

Experience of parents with H&NC whoExperience of parents with H&NC whoare caring for young childrenare caring for young childrenSemple & McCance (2010) Journal of Advanced Nursing 66 (6) 1280 -1290.

Qualitative study

Change in epidemiologyChange in epidemiology

Increase in the incidence ofH&NC for men and womanin their 30’s, 40s and 50s

e.g. oral cancer hase.g. oral cancer hasdoubled in the past threedecades from 3.6 to 8.5 per100,000 for men aged 40 –49

Research questionResearch question

What is the experience of parentsdiagnosed with H&NC who are caring

for young children?for young children?

IMPACT of HEAD & NECK CANCER on FAMILY LIFEIMPACT of HEAD & NECK CANCER on FAMILY LIFE

At Diagnosis

Fear ofTelling the

children

Fear ofTelling the

children

Fear ofDeath

and missingmilestones

Fear ofDeath

and missingmilestones

During Treatment

Effects ofHospital stay

Effects ofHospital stay

Effect ofTreatment

On family life

Effect ofTreatment

On family life

Changing rolesChanging roles

Living with Cancer

Re-establishingRoutine family

life

Re-establishingRoutine family

life

Appreciationof life

Appreciationof life

Living withuncertaintyLiving withuncertainty

MINIMISING DISRUPTION to FAMILY LIFEMINIMISING DISRUPTION to FAMILY LIFE

Support networks for the parents

CONCLUSIONCONCLUSION

What patients have the most challengingexperience?

SingleSingle

DeprivationDeprivation

Information: The problem poolInformation: The problem pool

YoungYoung

PersonalityPersonality

PrePre--existingexisting

CombinedCombinedTxTx

AlcoholAlcohol

OroOro--pharyngealpharyngeal

HypopharynxHypopharynx

LargeLarge

tumourstumours

UnknownUnknown

PrePre--existingexisting

distressdistress

Creating a Context for Oral HealthCreating a Context for Oral HealthTherapy RecommendationsTherapy Recommendations

• Recognition of disease states or symptoms that mayimpact on QOL

• Ensure appropriate patient education

• Aggressively treating treatable symptoms• Aggressively treating treatable symptoms

• If treatment is not feasible, establish realisticexpectations

• Make recommendations for referral – MDT required

Thank youThank you