European Annals of Otorhinolaryngology, Head and Neck diseases (2014) 131, 33—47

Available online at

ScienceDirect
www.sciencedirect.com

REVIEW

Quality of life tools in head and neck

oncology
N. Heutte a,∗, L. Plisson b, M. Lange a, V. Prevost a, E. Babin a,b

a
Cancers & prévention, INSERM U1086, université de Caen Basse-Normandie, UFR de Médecine, avenue de
la Côte-de-Nacre, 14032 Caen cedex 5, France
b
Service ORL et chirurgie cervico-faciale, CHU, avenue de la Côte-de-Nacre, 14033 Caen cedex 9, France

KEYWORDS Summary
Quality of life; Objective: Quality of life (QoL) is now as much an assessment criterion in clinical trials in head
Cancer; and neck oncology as are survival and response rate. It is therefore important to be able to
Head and neck; choose an adapted tool from the wide range of QoL instruments available. The present study
Quantitative presents an inventory of QoL scales validated in their French-language version, to facilitate the
assessment selection of appropriate tools showing good psychometric properties.
Materials and methods: QoL scales cited in all 492 French and English language articles pub-
lished between March 1st, 2006 and April 3rd, 2012, referenced on Medline and retrieved using
the keywords ‘‘quality of life’’ AND ‘‘head and neck’’ AND ‘‘cancer’’, were inventoried and
classified thematically in a search of the literature.
Results: Ninety QoL scales are presented by theme (ORL oncology, voice, swallowing and mas-
tication, mucosities and xerostomia, etc.), specifying psychometric quality and citation level.
Conclusion: The present report constitutes a guide to selecting QoL tools adapted to head and
neck oncology studies.
© 2013 Elsevier Masson SAS. All rights reserved.

Introduction ships, personal beliefs and their relationship to salient

In 1994, the World Health Organization (WHO) defined qual-
ity of life (QoL) as ‘‘individuals’ 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, expecta-
tions, standards and concerns. It is a broad ranging concept
affected in a complex way by the person’s physical health,
psychological state, level of independence, social relation-
∗ Corresponding author. Tel.: +33 2 31 45 86 20;
fax: +33 2 31 45 50 97.
E-mail address: natacha.heutte@unicaen.fr (N. Heutte).
features of their environment’’ [1]. It concerns not only
physical, psychological and social well-being and functional
independence but also self-fulfilment, spiritual life, sexual-
ity and finance [2].
Ultimately, however it may be defined in medical terms,
QoL is a subjective parameter representing the individual’s
perception of him- or herself in the world (social self).
In oncology, QoL is a function of health status and
the concept has evolved over the years. Cure in terms of
‘‘quantity of life’’ was long the oncologist’s main preoc-
cupation and survival the prime assessment criterion. The
‘‘quality of life’’ criterion developed due on the one hand
to patients’ limited life expectancy with ‘‘cure’’ as a rare

1879-7296/$ – see front matter © 2013 Elsevier Masson SAS. All rights reserved.
http://dx.doi.org/10.1016/j.anorl.2013.05.002
34
therapeutic endpoint, but also, on the other hand, to pro-
longed survival thanks to advances in treatment and family
involvement. QoL has now become a factor in the assess-
ment criteria of clinical trials, on a par with survival and
response rate [4,5].
Taking QoL into account in head and neck oncology is
no longer a matter of debate. Patients are confronted by
a highly lethal pathology and moreover need to learn to
deal with the impact of both disease and treatment on their
physical appearance, on functions as basic as swallowing,
breathing and speaking [6,7] and also on their everyday
life. They are frequently disadvantaged and of low socio-
economic status, with their social network impaired by the
impossibility of working [8]. Their physical disorders and the
psychological results of damaging treatment lead to solitude
and self-isolation, undermining quality of life [9].
The following sections list the QoL assessment instru-
ments available to head and neck oncology, detailing their
frequency of use, means of implementation and suitability.
Quantitative assessment
The objective is to enable tools to be selected and adapted
to assessment criteria while adhering to their specific
instructions for use, as they can neither be altered nor
implemented only partially.
QoL assessment involves choosing a tool from the many
available. In 2003, McHorney [10] cited more than 75 scales
for use in oncology. The choice of tool is fundamental to
study design and should be made according to the study
objective, target population characteristics (head and neck
cancer patients) and the psychometric properties of the
scale.
Quality of life is a multidimensional subjective parame-
ter, requiring a scale covering a wide range of items in a
variety of fields (physical, cognitive, etc.).
The EORTC QLQ-C30, for example, comprises
30 questions in all, with 24 questions assessing 1 global
health scale, 5 functional scales (physical, role, cognitive,
social and emotional) and 3 symptom scales (nausea, pain
and fatigue) and 6 questions for 6 simple items (dyspnea,
Table 1 Generic scales.
Scale Nature
Short Form-36 Validated generic scale
(SF-36) http://www.sf-36.org/
Short Form-12 Validated generic scale
(SF-12) http://www.sf-36.org/
EuroQol EQ-5D Validated generic scale
http://www.euroqol.org/
Patient Generated Index (PGI) Validated disease- or
treatment-specific scale [15]
N. Heutte et al.
insomnia, loss of appetite, constipation, diarrhea and
financial impact).
The various QoL scales can be divided into 2 groups:
generic and specific. Generic scales (EuroQol, SF-36, PGI,
etc.) address quality of life and health status indepen-
dently of any pathology in particular, enabling comparison
between patients with different pathologies or with
healthy controls. Specific scales address a given disease
(EORTC QLQ-C30 for cancer, Fact-H&N for head and neck
cancer, etc.), a given field and/or symptom (fatigue,
depression, xerostomia, dysphagia, etc.) or a given treat-
ment modality (surgery or radiation therapy), making
them more sensitive to clinical variations and treatment
effects.
Self-administered questionnaires are more sensitive than
those filled out by the physician or family [11]. They need
to be ‘‘acceptable’’ to the study population so as to maxi-
mize response rates and the number of items answered (and
hence the number of domains assessed). They should be as
quick to fill out as possible.
To qualify as ‘‘validated’’, a scale has to meet a certain
number of criteria [12]:
• validity: ability to measure what it claims to measure;
• reliability: stability or reproductibility over time in a pop-
ulation with unchanged health status or quality of life;
• sensitivity: ability to detect change over time, especially
at both extreme ranges (no ceiling or floor effect).
Psychometric validation involves statistical analysis.
When a validated scale is altered in terms of content or
presentation or translated into another language, comple-
mentary validation is required, to ensure validity [13]. Any
additional questions should be appended to the end of the
questionnaire, so as not to ‘‘break’’ its structure [14].
Tables 1—21 present the scales referred to in the 492 arti-
cles published between March 1st, 2006 and April 3rd, 2012,
referenced on Medline and retrieved using the key-words
‘‘quality of life’’ AND ‘‘head and neck’’ AND ‘‘cancer’’, with
the following limits: Humans, English, French, Publication
Field: Title/Abstract. The scales that have been validated
Citations Misc.
21 8 dimensions: physical functioning, role
limitations (physical problems), bodily pain,
general health, vitality, social functioning,
role limitations (emotional problems), and
mental health.
6 Abridged version of Short Form-36, covering
the same dimensions
3 5 dimensions: mobility, self-care, usual
activities, pain/discomfort and
anxiety/depression
1 1 measure of global quality of life
Quality of life tools in head and neck oncology 35

Table 2 Cancer-specific scales.

Scale Nature Citations Misc.

QLQ-C30 Validated cancer-specific scale > 50 8 dimensions: physical, role, cognitive,

EORTC QLQ-C15-PAL
Functional Assessment of
Cancer Therapy (Fact-G)
http://groups.eortc.be/qol/
Validated scale specific to QoL
in advanced, incurable,
symptomatic cancer with a few
months’ median life
expectancy
http://groups.eortc.be/qol/
Validated cancer-specific scale
http://www.facit.org/
social, emotional, nausea, pain, fatigue
6 simple items: dyspnea, insomnia, loss of
appetite, constipation, diarrhea and
financial impact
1 global QoL scale
1 5 dimensions: physical, emotional, nausea,
pain, fatigue
4 simple items: dyspnea, insomnia, loss of
appetite, constipation
1 global QoL scale
14 4 dimensions: physical, social/family,
emotional, functional well-being

Spitzer Quality of Life
Index (SQLI)
Memorial Symptom
Assessment Scale (MSAS)
Specific to cancer and chronic
disease, not validated in
French [17]
Specific to cancer, not
validated in French [18]
1 5 dimensions: activity, daily living, health,
support of family and friends, and outlook
1 3 dimensions: physical, emotional and
global distress
1 global score

in French-language versions are at the top of the list in each
Table. Otherwise, scales are ranked by citation rate.
Finally, study parameters have to be scored according to
the design of the scale used, which should therefore prefer-
ably accommodate as wide a range of scores as possible in
the proposed target population of the study, so as to maxi-
mize precision.
The most widely used generic scales are the SF-36 fol-
lowed by the SF-12 (Table 1). Administration time for the
SF-36 is 10 minutes [16]. Normal values are available on the
website shown in Table 1 below.
The main cancer-specific scales available in validated
French-language versions are the QLQ-C30 and Fact-G
(Table 2). Administration times are respectively 11 and
5 minutes [19].
The main scales specific to head and neck cancer and
available in validated French-language versions are the QLQ-
H&N35, Fact-H&N and UW-QOL (Table 3). Administration
times are respectively 11, 5 and 5 minutes [19]. The EORTC
QLQ-H&N35 scale is currently under revision to improve its
management of side-effects related to surgery and radiation
therapy (severe mucositis, hair-loss, neuropathy, chronic
dysphagia, etc.).
Table 4 presents scales specific to other forms of cancer.
The one scale specific to care with a validated
French version concerns cancer patients’ natural caregivers
(Table 5).
There are 2 scales specific to care satisfaction, both with
validated French versions (Table 6).
The VHI is a self-assessment scale measuring the sever-
ity of the disability entailed by voice disorder (Table 7). It
is a validated instrument, easy for the therapist to imple-
ment and for the patient to fill out: it takes 8 minutes, and
can thus be incorporated in a vocal assessment session. A
short version, the VHI-10, has been validated for both initial
assessment and follow-up of dysphonia.
The SHI is a speech assessment scale for oral or
oropharyngeal cancer patients. Unlike the VHI, it assesses
phonation disorder in patients in whom it is not only the
voice that is affected.
The V-RQOL has the particularity of highlighting quality
of life rather than disability. It can be implemented in all
types of dysphonia.
The Voice Prosthesis Questionnaire (VPQ) is a
speech assessment scale for patients fitted with a
tracheo-esophageal voice valve following total laryn-
gectomy.
The SECEL is designed to assess communication disorder
following laryngectomy. A new version, the S-SECEL, is also
adapted to communication disorder following other treat-
ments for laryngeal cancer (radio-chemotherapy).
The VAPP scale is based on the World Health Organi-
zation’s ICIDH (International Classification of Impairments,
Disabilities and Handicaps, 1997). It highlights a distinction
between 2 dimensions of voice disorder: limitation of activ-
ities and restricted participation in these activities; this
distinction had not previously been made in QoL scales for
vocal disorder.
The VoiSS is a sensitive assessment tool for dysphonia and
its evolution.
The VPQ (Voice Performance Questionnaire) was origi-
nally designed for self-assessment of vocal performance in
36 N. Heutte et al.

Table 3 Scales specific to head and neck oncology.

Scale Nature Citations Misc.

QLQ-H&N35 Validated scale specific to head and
neck oncology (supplementary
module to QLQ-C30)
http://groups.eortc.be/qol/
Fact-H&N Validated scale specific to head and
neck oncology
http://www.facit.org/
University of Washington Validated scale specific to head and
Questionnaire (UW-QOL) neck oncology
http://depts.washington.edu/otoweb/
research/head neck cancer.htm
> 50 7 dimensions: pain, swallowing,
taste/smell, speech, eating in public,
social life, sexuality
11 simple items
27 4 dimensions: physical, social/family,
emotional, functional well-being
12 simple items specific to head and
neck cancer
43 12 items: pain, appearance, activity,
leisure, swallowing, mastication,
speech, shoulder dysfunction, taste,
production of saliva, mood, anxiety

MD Anderson Symptom
Inventory -Head and Neck
(MDASI-HN)
Head and Neck Performance
Status Scale (PSS-HN)
University of Michigan Head
and Neck Specific Quality of
Life Instrument (HNQoL)
Head and Neck Cancer
Inventory (HNCI)
Auckland Quality of Life
Questionnaire (AQLQ)
comprising 3 questionnaires:
Life Satisfaction Score,
General Health
Questionnaire12 and
Functional Ability
questionnaire
http://www.headandneckcancer.co.uk/
Validated scale specific to head and
neck oncology
http://www3.mdanderson.org/depts/
symptomresearch/
Validated scale specific to head and
neck oncology [20,21]
Scale specific to head and neck
oncology, not validated in French [22]
Scale specific to head and neck
oncology, not validated in French [23]
Scale specific to head and neck, not
validated in French [24,25]
2 3 dimensions: level of general
associated symptom severity, impact
of symptom severity on daily life,
level of specific head and neck
symptom severity
9 3 dimensions: normality of feeding,
and ability to speak and to eat in
public
8 4 dimensions: pain, communication,
feeding and emotion
10 4 dimensions: eating, speech,
esthetics, and social disruption (pain,
work, etc.)
3 5 dimensions: physical, symptoms,
social, psychological, well-being
11 items of psychological well-being
and life satisfaction

patients with non-organic dysphonia, but has been extended
to studies of organic dysphonia.
The PHI is the only instrument originally designed and
validated in French; it is based on the Voice Handicap Index
(VHI) and Deglutition Handicap Index (DHI) and enables
self-assessment of speech and communication disability in
dysarthria patients.
No scales specific to mucosities or xerostomia have been
validated in their French-language versions (Table 8). A pre-
liminary validation phase will be needed for them to be
employed.
The only deglutition-specific scales with validated
French-language versions are the DHI and SWAL-QOL
(Table 9). A preliminary validation phase is needed for the
others.
Neither of the two scales specific to shoulder function has
been validated in their French-language versions (Table 10).
A preliminary validation phase will be needed for them to
be employed.
The only scale specific to dental pathology with a val-
idated French-language version is the GOHAI (Table 11),
which was validated in a general population. A comple-
mentary module of the QLQ-C30, the QLQ-OH17 [74], is
presently under validation in various translations, includ-
ing French, assessing the QoL impact of oral and dental
issues.
Quality of life tools in head and neck oncology 37

Table 4 Scales specific to ‘‘other cancers’’.

Scale Nature Citations Misc.

Functional Assessment of Specific to nasopharyngeal cancer, 1 4 dimensions: physical, social/family,

Cancer Therapy validated emotional, and functional well-being
-Nasopharyngeal (FACT-NP)
http://www.facit.org/ 16 specific items: e.g., eating,
swallowing, dry mouth, appetite,
taste, voice quality, communication,
appearance, pain, neck motion,
tinnitus, hearing, vision, smell and
nasal obstruction
QLQ-OES18 Specific to esophageal cancer 1 18 items: dysphagia, feeding, reflux,
(supplementary module to QLQ-C30), chest/abdominal pain.
validated

http://groups.eortc.be/qol/
Fact-E Specific to esophageal cancer
http://www.facit.org/
1 4 dimensions: physical, social/family,
emotional and functional well-being
17 simple items specific to feeding,
appetite, swallowing, dry mouth,
nocturnal cough, voice,
communication, pain, weight loss.

Table 5 Scales specific to care impact.

Scale Nature Citations Misc.

Caregiver Quality of Life Index
- Cancer (CQOLC)
Head and Neck Radiotherapy
Questionnaire (HNRQ)
Neck Dissection Impairment
Index (NDII)
Quality of Life Radiation
Therapy Instrument
(QOL-RTI/H&N)
Quality of Life - Enteral
Feeding questionnaire
(QOL-EF)
Specific to care impact, validated
[26,27]
Specific to head and neck cancer, not
validated in French [28]
Specific to treatment, not validated
in French [29]
Specific to treatment, not validated
in French [30,31]
Specific to impact of enteral feeding
tubes on head and neck cancer
patients, not validated in French [32]
1 1 total score and 4 sub-scales: burden
of care, disturbance, positive
adaptation, and financial worry.
3 6 dimensions: oral cavity (mouth),
throat, skin, digestive function,
energy, and psychosocial.
2 10 items for 1 global score
1 25 general QoL items
14 more specific head and neck items
1 20 items

Table 6 Scales specific to care satisfaction.

Scale Nature Citations Misc.

EORTC SAT 32 (Satisfaction Specific to care satisfaction,
with care) validated
http://groups.eortc.be/qol/
OUT-PATSAT 35 Specific to ambulatory care
satisfaction (chemotherapy and
radiotherapy), validated [33]
1 32 items on perceived care quality
and patient’s relation to physicians
and nurses and to care organization
and hospital organization as a whole
1 35 items on outpatient satisfaction
with physicians and care staff and
organization of care and departments
38 N. Heutte et al.

Table 7 Scales specific to voice and speech.

Scale Nature Citations Misc.

Vocal Handicap Index
(VHI/VHI-10)
Speech Handicap Index (SHI)
University of Michigan
Voice-Related Quality of Life
(V-RQOL)
Voice Prosthesis Questionnaire
(VPQ)
Specific to voice, validated for 10 3 dimensions: functional, physical
30-item version [34,35], and emotional aspects of vocal
not validated in French for 10-item handicap
version [36,37] 1 global score
Specific to speech, validated [38,39] 2 2 dimensions: speech and
psycho-social
2 isolated items
1 global score
Specific to voice, not validated in 3 2 dimensions: social-emotional and
French [40] physical
1 global score
Specific to voice, not validated in 1 45 items
French [41]

Self Evaluation of
Communication Experiences
after Laryngectomy
(SECEL/S-SECEL)
Voice Activity Participation
Profile (VAPP)
(specific scale not retrieved
in literature search)
Voice symptom scale (VoiSS)
(specific scale not retrieved
in literature search)
Voice Performance
Questionnaire (VPQ)
(specific scale not retrieved
in literature search)
Parole Handicap Index (PHI)
(specific scale not retrieved
in literature search)
Specific to head and neck cancer, not
validated in French [42,43]
Specific to voice, not validated in
French [44]
Specific to voice, not validated in
French [45]
Specific to voice, not validated [46]
Specific to speech, validated in
French [47]
1 3 dimensions: general, experience of
voice, attitude
1 global score
28 items on: severity, social,
occupational and
communication-related impact,
emotional impact
1 global score
3 dimensions: deficiency, emotional
aspect, physical symptoms
12 items: physical symptoms and
socioeconomic impact of vocal
disorder
1 global score
3 dimensions: physical,
communication, and social handicap
Global score

No scales specific to feeding issues have been validated
in their French-language versions (Table 12). A preliminary
validation phase will be needed for them to be employed.
Both of the fatigue-specific scales cited in the reports
have validated French-language versions (Table 13). Some
questions are found in both questionnaires.
A complementary module of the QLQ-C30, the QLQ-FA13
[77], is presently under validation in various translations,
including French, assessing cancer-related fatigue.
No scales specific to oral pain have been validated in
their French-language versions (Table 14). A preliminary
validation phase will be needed for them to be employed.
Five scales specific to anxiety and depression have vali-
dated French-language versions (Table 15). The most widely
used is the HADS. A stress-specific scale, the PSS, comes in
a validated French-language version.
A scale specific to sexuality has yet to be validated in a
French-language version (Table 16). A preliminary validation
phase will be needed for it to be employed. The Derogatis
Sexual Functioning Inventory (DSFI) [105] does not have a
validated French-language version, but assesses the quality
of patient’s sexual life.
A scale specific to sleep has yet to be validated in a
French-language version (Table 17). A preliminary validation
phase will be needed for it to be employed.
The only scale specific to alcohol consumption and
related issues to have a validated French-language version
is the AUDIT (Table 18).
There are almost no data in head and neck oncology
concerning the cognitive impact of cancer and cancer treat-
ment (Table 19): the only specific study found that 9 out of
10 patients showed cognitive disorder [110]. A specificity
of head and neck oncology is the likelihood of alcohol-
related comorbidity, with neuropsychological consequences
of varying severity that make the question of cognitive func-
tioning particularly complex and interesting. There are 2
essential cognitive assessments to perform: pre-treatment,
to screen for risk of non-compliance, and post-treatment,
Quality of life tools in head and neck oncology
Table 8 Scales specific to mucosities and xerostomia.
Scale
Oral Mucositis Weekly Questionnaire -
Head and Neck Cancer (OMWQ-HN)
Oral Mucositis Daily Questionnaire
(OMDQ)
Oropharyngeal Mucositis Quality Of
Life Scale (OMQoL)
Xerostomia Questionnaire (XQ)
Xerostomia Questionnaire (XQ)
Xerostomia Questionnaire (XQoL)
Xerostomia Questionnaire VAS
Xerostomia-related Quality of Life
scale (XeQoLs)
Table 9 Scales specific to swallowing and mastication.
Scale
Deglutition Handicap Index
(DHI) (specific scale not
retrieved in literature
search)
Swallowing Quality-of-Life
Questionnaire (SWAL-QOL)
(specific scale not retrieved
in literature search)
MD Anderson Dysphagia
Inventory (MDADI)
Subjective Chewing Ability
Sydney Swallow Questionnaire
(SSQ)
Dysphagia Handicap Index
(specific scale not retrieved
in literature search)
Nature
Specific to mucosities, not
validated in French [48]
Specific to mucosities, not
validated [49,50]
Specific to mucosities, not
validated in French [51]
Specific to xerostomia, not
validated in French [52]
Specific to xerostomia, not
validated [53]
Specific to xerostomia, not
validated in French [54]
Specific salivary function,
not validated in French [55]
Specific to xerostomia, not
validated in French [56]
Nature
Specific to swallowing, validated
[57—59]
Specific to swallowing, validated[60]
Specific to swallowing, not validated
in French [61]
Specific, not validated in French [62]
Specific to swallowing, not validated
in French [63,64]
http://stgcs.med.unsw.edu.au/stgcsweb.
nsf/resources/SSQ/$file/SSQ.pdf
Specific to swallowing, not validated
in French [65]
39
Citations Misc.
1 12 simple items
1 12 simple items
2 4 dimensions: symptoms, feeding,
social, swallowing
2 8 items including 4 items on dryness
when eating or chewing
2 4 items: dryness, oral route pain, loss
of taste, and dysphagia
1 dimension: perceived QoL impact
of xerostomia
1 pain intensity VAS
2 5 dimensions: global, emotional,
functional, and physical
1 global score
1 8 items: oral mucosa dryness,
difficulty in swallowing and speaking,
quantity of saliva, thirst.
1 4 dimensions: physical, psychological,
social, pain/discomfort
1 global score
Citations Misc.
3 dimensions: emotional, functional
and physical
10 dimensions: eating (burden,
duration, desire, food selection),
communication, fear, mental health,
social impact, fatigue and sleep
9 4 dimensions: global, emotional,
functional, and physical
2 9 items on ability to chew various
foods
1 17 items
1 global score
3 dimensions: physical, emotional
and functional
1 global score
40 N. Heutte et al.

Table 10 Scales specific to functional assessment of shoulder pathology.

Scale Nature Citations Misc.

Shoulder Pain and Disability Index
(SPADI)
Shoulder Disability Questionnaire (SDQ)
American Shoulder and Elbow Surgeons
Shoulder
Assessment (ASESSA)
Specific, not validated in 1 2 dimensions: pain and disability
French [66]
Specific to pain-related disability, 1 16 items for 1 global score
not validated in French [67]
Specific to functional assessment 1 5 items on pain, ROM, force,
of shoulder pathology, not stability and functional work
validated in French [68]

Table 11 Scales specific to dental pathology.

Scale Nature Citations Misc.

Geriatric Oral Health
Assessment Index (GOHAI)
Oral Health Impact Profile
(OHIP)
Denture Satisfaction
Groningen Activity Restriction
Scale - Dentistry (GARS-D)
Oro-dental specific index,
validated [69,70]
Oro-dental specific scale, not
validated in French [71]
Dental specific scale, not
validated in French [72]
Dental specific scale, not
validated [73]
1 12 items for 1 global score
2 6 oro-dental dimensions: functional
limitation, physical pain, physical disability,
psychological discomfort, psychological
disorder and social handicap
2 8 items: upper and lower dentures, and
specific characteristics (esthetic, functional
comfort, etc.)
2 11 items on impact on dental issues on
social life

Table 12 Scales specific to feeding.

Scale Nature Citations Misc.

Trial Specific Questionnaire Specific to feeding and communication, 1 4 dimensions: feeding, language,
(TSQ) not validated in French [75] social contact and social anxiety
Willett Food Frequency Specific to foods, not validated in 1 Fruit and vegetable foods
Questionnaire French [76] questionnaire

Table 13 Scales specific to fatigue.

Scale Nature Citations Misc.

Facit-F Specific to symptoms, validated 3 4 dimensions: physical, social/family, emotional,

functional well-being
http://www.facit.org/
13 simple items specific to fatigue intensity
Fact-An Specific to symptoms, validated 1 4 dimensions: physical, social/family, emotional,
functional well-being
http://www.facit.org/
20 simple items specific to anemia and fatigue

Table 14 Scale specific to oral pain.

Scale Nature Citations Misc.

University of California San Specific to head and neck cancer, not 2 6 items on pain: intensity, sharpness
Francisco (UCSF) Oral Cancer validated in French [78,79] and throbbing nature, of pain during
Pain Questionnaire and not during oral function
Quality of life tools in head and neck oncology
Table 15 Scales specific to anxiety, depression psychological impact.
Scale
Hospital Anxiety and
Depression Scale (HADS)
Beck Depression Inventory
(BDI)
Centre for Epidemiological
Studies Depression Scale
(CES-D)
General Health Questionnaire
(GHQ-30)/
Goldberg Mental Health
Survey-12 (GHQ-12)
Montgomery Asberg Depression
Rating Scale (MADRS)
Perceived Stress Scale (PSS)
Geriatric Depression Scale -
Short Form (GDS-SF)
The Illness Perception
Questionnaire - Revised
(IPQ-R)
Mini Mental Adjustment to
Cancer (MINIMAC)
Hamilton Rating Scale for
Depression (HRSD)
Clinical Global Impression -
Severity (CGI-S)
Hopkins Symptom Checklist-25
Beck Depression Inventory -
Fast Screen (BDI-FS)
Brief Symptom Inventory (BSI)
Beliefs about Medicine
Questionnaire - Specific
Scale (BMQ-Specific)
Distress Inventory for Cancer
(DIC2)
Mental Health Inventory (MHI)
Eysenck Personality Inventory
Life Orientation Test - Revised
(LOT-R)
Nature
Specific to anxiety and
depression, validated [80,81]
Specific to depression,
validated [82]
Specific to depression,
validated [83,84]
Specific psychiatric
questionnaire,
validated [85,86]
Specific to depression,
validated [87,88]
Specific to stress, validated
[89]
Specific to depression, not
validated in French [90,91]
Specific, not validated in
French [92]
Specific to cancer, not
validated in French [93]
Specific to depression, not
validated in French [94]
Specific to depression, not
validated
Specific to depression, not
validated in French [95]
Specific to depression, not
validated in French [96]
Specific psychiatric inventory,
not validated in French [97]
Specific to head and neck, not
validated in French [98]
Specific to cancer, not
validated in French [99]
Generic scale, not validated in
French [100]
Specific to neurasthenia, not
validated in French [101,102]
Specific, not validated in
French [103]
41
Citations Misc.
21 2 dimensions: anxiety and depression
7 21 items on depression symptom level
1 total score
4 1 dimension: depression
2 4 dimensions: depression, anxiety,
unacceptable social behavior,
hypochondria
1 10 items: emotional, cognitive, and
physical symptoms
1 1 score
5 1 dimension
3 8 dimensions measuring cognitive and
emotional representations of disease
2 5 dimensions: fighting spirit,
helpless/hopeless, fatalism, anxious
preoccupation and cognitive avoidance.
1 21 items
1 final score
1 1 dimension
1 25 items on depression and anxiety
1 7 items on level of depression symptoms
1 total score
1 3 global scales and 9 sub-scales, including
somatization, depression, anxiety
1 2 dimensions: necessity of treatment and
worries about health and possible
side-effects
1 7 dimensions: emotional distress, spiritual
distress, social distress, medical distress,
activity of daily living and family-specific
distress and a total distress score
1 3 dimensions: psychological distress,
psychological well-being, global
4 3 dimensions: neurosis, neurasthenia,
emotional instability
2 12 items on optimism and pessimism
42 N. Heutte et al.

Table 16 Scale specific to sexuality.

Scale Nature Citations Misc.

Modified Sexual Adjustment Specific to sexuality and head and 1 7 items: sexuality, sexual function,
Questionnaire for Head and neck cancer, not validated [104] relation/activity
Neck Cancer (SAQ) (specific
scale not retrieved in
literature search)

Table 17 Scale specific to sleep.

Scale Nature Citations Misc.

Medical Outcomes Study - Specific to sleep, not validated in 2 6 dimensions: sleep disorder, sleep
sleep (MOS) French [106] quality, somnolence, snoring,
respiratory problems, amount of
sleep
http://gim.med.ucla.edu/FacultyPages/Hays/surveys.htm

Table 18 Scales specific to alcohol consumption and related issues.

Scale Nature Citations Misc.

Alcohol Use Disorder Specific to alcohol, validated [107] 5 10 items: alcoholization level and
Identification Test (AUDIT) associated problems
Michigan Alcoholism Screening Specific to alcohol, not validated in 2 13 items: alcohol consumption
Test (MAST) French [108,109]

Table 19 Scales specific to cognitive functions.

Scale Nature Citations Misc.

Fact-cog Specific to cancer, validated 1 4 subscales: Perceived Cognitive

http://www.facit.org/
Mini-Mental State Examination Specific to cognitive functions,
(MMSE) validated [128]
Impairments, Perceived Cognitive
Abilities, Comments From Others,
and impact of deficits on QoL
1 30 points

Table 20 Scales specific to independence.

Scale Nature Citations Misc.

Activities of Daily Living (ADL) Specific to independence, 1 1 global score for body care, dressing,
validated [113] eating, toileting,
continence, transferring

Instrumental Activities of Daily Specific to independence, validated 1 1 global score: shopping,

Living (IADL) [114] housekeeping, laundering,
accounting, food preparation/meds,
telephone/transportation
Quality of life tools in head and neck oncology 43

Table 21 Scales specific to support.

Scale Nature Citations Misc.

Brief COPE Specific to socialization, 3 14 dimensions: active coping, planning,

Short-form Social Support
Questionnaire (SSQ6)
Functional Assessment of
Chronic Illness
Therapy-Spiritual
(FACIT-Sp-12)
Cope inventory
Social Provisions Scale (SPS)
Work and Social Adjustment
(WASA)
Openness to Discuss Cancer in
the Family scale (ODCF
scale)
Utrecht Coping List
Svebak’s Sense of Humor
Questionnaire (SHQ)
validated [115,116]
Specific to social support,
validated [117,118]
Specific to spiritual well-being,
validated
http://www.facit.org/
Specific, not validated [119]
Specific, not validated in
French [120,121]
Specific to disease impact, not
validated in French [122]
Specific, not validated in
French [123]
Specific, not validated in
French [124]
Generic scale, not validated in
French [125]
suppression of competing activities,
restraint coping, seeking of instrumental
social support, seeking of emotional social
support, positive reinterpretation,
acceptance, denial, turning to religion,
focus on and venting of emotions,
behavioral disengagement, mental
disengagement
1 2 dimensions: number of available social
supports, satisfaction with available
support
1 12 items
5 5 dimensions of socialization
2 6 dimensions: attachment, social
integration, reassurance of worth, reliable
alliance, guidance, and opportunity for
nurturance
1 1 global score
1 1 dimension
1 7 dimensions: active problem-focusing,
looking for distraction, avoidance, seeking
social support, palliative reaction patterns,
expression of emotions, and optimism
1 1 dimension: liking or loathing humorous
situations

to assess the impact of chemotherapy. The origin of dis-
orders observed at end of treatment, however, is hard to
determine: impact of cancer, of anti-cancer treatment, of
alcohol consumption, etc. Subjective cognitive assessment
on the FACT-Cog (Functional Assessment of Cancer Therapy-
Cognitive Function) [111,112] must therefore be associated
to a neuropsychological assessment and take account of
alcohol-related comorbidity.
The 2 scales specific to independence have been
validated in their French-language versions and are com-
plementary (Table 20).
The most widely used support-specific scale, the Brief
COPE, has a validated French-language version (Table 21).
Qualitative assessment
In QoL assessment, the qualitative is not opposed to the
quantitative: they are useful complements. This method of
investigation is little known to physicians, although seeing
the disease in the context of the patient’s everyday life
broadens a medical vision centered on physical data.
The most experimental attitude, that of the ‘‘participant
observer’’, is time-consuming but rich in information.
Systematic ‘‘field-work’’ is the ethnological approach
underpinning the theoretic value of research. The accu-
sation of subjectivity is unfounded, even if this technique
seems far removed from the scientific requirement of
quantitative research. Lévi-Strauss and other renowned
anthropologists have brushed aside the accusation: rather
than avoiding subjectivity, they have made it a ‘‘means of
objective demonstration’’ [126,127]. The privileged posi-
tion we occupy in the care-giving relationship has a very
particular participant-observer aspect, as we have both lit-
erally and metaphorically ‘‘operated on’’ the patient’s body.
What is essential is to constantly maintain one’s ethno-
graphic identity so as totally to respect the object of
one’s research. This is a fairly novel attitude in head and
neck oncology, shedding new light the daily life of patients
marked by disease and treatment [8].
44
Conclusion
QoL scales seem to be the reference tools for longitudi-
nal follow-up of head and neck cancer patient cohorts.
They reveal differences in perception between caregivers
and care receivers and in some cases enable treatment to
be optimized. QoL research focuses the attention on the
integration of disease in everyday life and on variations
along different dimensions (family relationships, work, etc.)
according to disease stage.
The present study provides a guide to informed selec-
tion of validated instruments appropriate to head and neck
oncology studies.
Disclosure of interest
The authors declare that they have no conflicts of interest
concerning this article.
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