Head and Neck Cancer Survivorship:

Learning the Needs, Meeting the Needs

Jolie Ringash, BSc, MD, MSc,*,† Lori J. Bernstein, BA, MA, MPhil, PhD,‡,†
Gerald Devins, PhD, CPsych,‡,† Colleen Dunphy, BSc(PT), MSc,§,†
Meredith Giuliani, MBBS, MEd, FRCPC,*,†
Rosemary Martino, MA, MSc, PhD,†,║,¶ and
Sara McEwen, BSc(PT), MSc, PhD#,**

Cancers of the head and neck and the treatments required to control them frequently result in
serious and persistent impairments that can affect participation and quality of life. Increased
recognition of the needs of cancer survivors and their caregivers has prompted research
focused on the unique concerns of this complex group. Unmet needs have been identified
among 60–70% of patients and a similar proportion of their partners; impacts can include
profound social effects, isolation, and psychiatric conditions. Interprofessional teams,
supplementing oncology nursing and physicians with physical rehabilitation, occupational
therapy, speech-language pathology, nutrition and psychological disciplines is important to
address the spectrum of emotional, cognitive, physical and functional, and pragmatic issues. In
addition to investigating modified anti-cancer therapy intended to reduce the frequency of
long-term toxicities, supportive care strategies that may be effective include physical activity,
nutritional intervention, behavioral and cognitive-behavioral therapy, psycho-education and
goal management therapy. This article addresses identified needs across varied domains, the
current state of research surrounding them, and their impact on quality of life, while also
describing one cancer center’s approach to head and neck cancer survivorship.
Semin Radiat Oncol 28:64-74 C 2017 Elsevier Inc. All rights reserved.

Introduction catalyst to the development of cancer survivorship initiatives.

In fact, significant efforts in both research and program
The 2005 publication, From Cancer Patient to Cancer development relevant to what we now term “survivorship”
Survivor: Lost in Transition,1 is frequently regarded as the pre-date this document. Supportive care research and pro-
grams using terms such as quality of life (QOL), psychosocial
care, rehabilitation, and pastoral care, among others, have long
⁎
Department of Radiation Oncology, The Princess Margaret Cancer Centre/ aimed to meet the holistic needs of cancer patients. However,
University Health Network, Toronto, ON, Canada. such programs were frequently insufficiently resourced, frag-
†
Department of Otolaryngology - Head and Neck Surgery, The University of
Toronto, Toronto, ON, Canada.
mented, and/or inaccessible due to cost or geography. Thus,
‡
Department of Supportive Care, The Princess Margaret Cancer Centre/ 2005 is a watershed date for increased public discourse
University Health Network, Toronto, ON, Canada. regarding the ongoing implications of a cancer diagnosis, for
§
The University Health Network, Toronto, ON, Canada. both the individual and those in his or her circle of care.
║
Department of Speech-Language Pathology and Rehabilitation Sciences
Institute, The University of Toronto, Toronto, ON, Canada.
Targeted funding, meetings, and collaborations resulted. Initial
¶
Krembil Research Institute, University Health Network, Toronto, ON, efforts focused on common cancers, and in particular breast
Canada. cancer. However, over time, there has been recognition that
#
Sunnybrook Research Institute, Toronto, ON, Canada. needs may differ across cancer diagnoses, related to differences
**
Department of Physical Therapy and Rehabilitation Sciences Institute, The
University of Toronto, Toronto, ON, Canada.
in demographics, the specific disease and treatment-related
Conflict of interest: none of the authors have conflicts of interest. effects, and differing time courses for active treatment, chronic
E-mail: jolie.ringash@rmp.uhn.on.ca (J. Ringash) care, surveillance, and recurrence.

64 http://dx.doi.org/10.1016/j.semradonc.2017.08.008
1053-4296/& 2017 Elsevier Inc. All rights reserved.
Head and neck cancer survivorship needs
Head and neck cancer (HNC) is a term usually encompass-
ing primarily squamous cell cancers of the mucosal surfaces of
the upper aerodigestive tract (paranasal sinuses, nasal cavity,
pharynx, oral cavity, and larynx), often grouped together with
major and minor salivary gland cancers, and with more
variable inclusion of other rare pathologies occurring in the
same anatomic locations (eg, adenocarcinomas, sarcomas, and
melanomas). These relatively rare cancers together make up
about 5% of all cancers, but patients and families affected by
these malignancies experience such profound and numerous
disabilities that their morbidity far exceeds their incidence.
In this review, we attempt to outline the unmet needs of
HNC survivors and address the current knowledge around
managing the major physical, emotional, and cognitive dis-
abilities that affect them. We also describe the ongoing
evolution of an interdisciplinary, disease-specific survivorship
program under development since 2012 for these survivors at
a single large cancer center.
Unmet survivorship needs in HNC
patients and their caregivers
Unmet survivorship needs are common and have been
identified in over 50% of general cancer patients.2 These
unmet needs, if they are not addressed, can negatively impact
psychological well-being, QOL, and ability to complete daily
tasks.3 Recent studies have investigated the specific nature of
unmet needs in HNC patients, a group who had been largely
excluded from previous work in this area.4
There are several validated measures to assess unmet
supportive care or survivorship needs in cancer patients,
however, a detailed review of these instruments is beyond
the scope of this article.5 One such measure is the CaSUN,
which is a measure of patient-reported supportive care needs
for cancer survivors. It was developed and validated in largely
female cancer survivors.6 It explored unmet survivorship needs
across 5 domains: Existential Survivorship (14 items), Com-
prehensive Cancer Care (6 items), Information (3 items), QOL
(2 items), and Relationships (3 items). The CaSUN asks
respondents to indicate each item in 1 of 3 categories: no need
or not applicable; have need but it is met; or, need is unmet.6
The CaSPUN is a companion self-reported tool to the CaSUN
for the partners or caregivers of cancer survivors.6
A cross-sectional study of 158 HNC survivors at Princess
Margaret Cancer Centre was conducted at the Princess
Margaret Cancer Centre using the CaSUN.6 Among 158
patients sampled, 96 (61%) reported at least 1 unmet need
and 6 had a very high number of needs (31-35 out of a possible
35 items). The mean number of unmet needs per patient was
6. The most common unmet needs in those who had
completed active treatments were “I need help to manage my
concerns about the cancer coming back,” “I need to know that
all my doctors talk to each other to coordinate my care,” “I need
more accessible hospital parking,” “Due to my cancer, I need
help getting life and/or travel insurance,” and “I need up to date
information.” In multivariable analysis patients who were
younger, closer to the time of their cancer treatment, and
65
who has reported worse QOL7,8 were more likely to have high
numbers of unmet needs.9
In addition to studying the unmet needs of HNC patients, 44
partners of the 158 patients in the study above completed the
CaSPUN. The CaSPUN assesses and identifies needs experi-
enced by partners within the last month over 35 need items,
including 6 positive change items, and 1 open-ended question.
Of the 44 partners who participated in this aspect of the study
29 reported as least1 unmet need and 4 had a very high number
of needs (31-35 out of a possible 35 items). The most common
unmet needs in the partners of HNC patients were “I need help
to manage my concerns about the cancer coming back,” “I need
more accessible hospital parking,” and “I need help to cope with
others not acknowledging the impact that having a partner
experience cancer has had on my own life.” An increasing
number of unmet needs in patients was significantly associated
with increasing number of unmet needs in their partners.10
The results from these studies are corroborated by a study
using the Supportive Care Needs Survey (SF34),11 which
reported that 68% of 127 HNC patients had unmet needs. The
majority of the most frequently mentioned unmet needs
occurred in the psychological domain. These included fears
of cancer recurrence, future uncertainty, sadness, and concerns
about family/friends.12 Balfe et al13 surveyed 197 caregivers of
HNC survivors using the “partners and caregiver supportive
care needs survey,”14 and reported managing fears of cancer
recurrence as the most common unmet need.
These compelling data demonstrate significant unmet
needs. The development of survivorship programmes for
HNC patients and their partners or caregivers will be guided
by this information. However, other strategies to meet these
needs may be required, especially in smaller cancer centers.
HNC-specific physical
rehabilitation issues
Cancer rehabilitation involves coordinated, professional care
that enables people to maximize physical, social, and psycho-
logical function within the limits of the disease and its
treatment effects, and engage in personally valued activities
within their social contexts.15 Health disciplines involved with
delivering rehabilitation may include (but are not limited to)
occupational therapists, physiatrists, physical therapists, psy-
chologists, registered dieticians, social workers, and speech-
language pathologists. Survivors of HNC have among the most
complex rehabilitation needs of all cancer survivors due to the
anatomical complexity of the head and neck region. In
addition to the extremely common speech and swallowing
issues (discussed in the next section), they may have lymphe-
dema, pain, stiffness, and/or weakness of the jaw, neck, and
shoulder. Radiation (RT) in the area may cause fibrosis and
other latent effects. In people requiring neck dissection surgery,
there is a risk of damage to the spinal accessory nerve that
supplies the trapezius muscle.16 Even when the accessory
nerve is spared, up to two thirds of patients report shoulder
dysfunction.17 Impairments from HNC and its treatments can
lead to body-image dissatisfaction, cognitive and behavioral
66
problems,18 decreased role functioning,19 decreased nutri-
tional status,20 decreased communication,21 and inability to
return to work.22,23 There is an increasing burden to working-
aged adults, due to the increasing numbers of young survivors
of HPV-related oropharyngeal cancer; these individuals are
more likely to have the social, emotional, and financial
responsibilities associated with having a dependent family.24,25
A growing body of evidence suggests that rehabilitation
interventions, both during and following HNC treatment, are
associated with impairment reduction and improved QOL and
function. Successful rehabilitation interventions may be deliv-
ered as single service (eg, physical therapy or speech-language
pathology alone), or as part of an interdisciplinary program.
They may address impairments that are common to most
cancer disease sites (eg, deconditioning and fatigue), or HNC-
specific impairments, such as dysfunction in the neck and
shoulder region.
As with other cancer sites, there is evidence that physical
activity mitigates many of the adverse physical effects associ-
ated with HNC. A recent systematic review identified
16 articles that found physical activity interventions are safe
and feasible for those with HNC.26 Further, survivors
experienced improvements in lean body mass, muscular
strength, physical functioning, QOL, and fatigue manage-
ment. Evidence also supports rehabilitation interventions for
HNC site-specific impairments. For example, early evidence
suggests that physical therapy treatments for lymphedema
can result in reduced lymphedema and pain.27 Progressive
resistance training programs are associated with reduced
shoulder pain and disability and improve upper extremity
muscular strength and endurance.28 Although outcomes
may be similar for interventions delivered during and after
treatment, and there are bio-medical arguments to imple-
ment exercise-based interventions earlier in the care con-
tinuum, there seems to be a patient preference to engage in
exercise after treatment.29 Family members expressed a
similar preference.30 Thus, implementing these programs
after curative treatment may increase adherence.
Because of the numerous and complex rehabilitation needs
of some survivors of HNC, there is interest in developing
multidisciplinary programs, although fewer examples exist in
the peer-reviewed literature. A combined nutrition and exer-
cise program was associated with improvements in QOL and
general conditioning, and reductions in insomnia, pain, weak-
ness, anorexia, shortness of breath, depression, and distress
(effect sizes 0.6–0.9).31 More recently, a comprehensive multi-
disciplinary team-based rehabilitation program aimed to
enable survivors to increase participation in society, and
demonstrated significant improvement in aspects of QOL,
and a reduction in distress.32 Additional research into pro-
grams involving multiple disciplines is warranted.
Although rehabilitation interventions show promise to
improve the QOL, in practice, HNC survivors may have
difficulty accessing rehabilitation30 and have high levels of
unmet rehabilitation needs, as reviewed above.33 To address
these concerns, oncologists and rehabilitation scientists in
Toronto (including authors J.R., C.D., R.M., and S.M.) have
developed a 1-2 session rehabilitation planning consultation
J. Ringash et al.
for survivors of HNC that is based in self-management theory
and aims to inform survivors about available community-
based rehabilitation resources and teach them to set and follow
through with individualized goals and actions plans related to
their rehabilitation need.33 Preliminary evidence from a single
group pilot test suggests the rehabilitation planning consult
builds confidence to access rehabilitation resources, has a large
effect on performance of individual goals, and has a moderate
effect on aspects of QOL.34(unpublished data)
Swallowing and Speech
Impairments
Swallowing and speech impairments are common comorbid-
ities experienced by HNC survivors at various intensities
throughout their lifetimes. Within the first year post-RT,
approximately half of HNC survivors experience difficulties
with swallowing (dysphagia)35,36 and speech (dysarthria).37 By
1 year post-RT, these impairments persist but are significantly
reduced.38,39 Unfortunately, both dysphagia and dysarthria
can worsen years after RT. In fact, of all patients who return for
follow-up because of late (beyond 5 years) RT-related tox-
icities, approximately 66% have severe dysphagia requiring
lifelong tube feeding.40 Likewise, dysarthria has been reported
in HNC survivors up to 10 years after RT, with up to 70%
having reduced articulation and intelligibility restricting social
interactions.41 Clearly the presence of severe dysphagia and/or
dysarthria in the HNC survivor is devastating and not
surprisingly associated with reduced QOL.39,35
According to the opinion of HNC patients, maintaining the
ability to swallow and speak are their top 2 functional
priorities. Even before undergoing treatment, HNC patients
rank issues related to verbal communication and eating above
all other concerns.42 After HNC treatment, HNC patients
continue to rank swallowing and speech as their primary
issues.30 Specifically, HNC survivors relate dysphagia to
significant disruptions in daily experiences that lead to feelings
of physical, emotional, and social loss. Chief among these are
weight loss, inability to eat the foods previously enjoyed, and
the need to eat alone because eating takes so much time.43
One study has further shown that the psychological impact on
the patient is time-dependent and varies according to the
individual’s recovery trajectory. Specifically, health anxiety,
especially “fear of choking to death” was the prevailing issue
reported by patients with acute dysphagia (o90 days of
onset); whereas, depression was the predominant issue with
chronic dysphagia (490 days of onset).44 Furthermore, in
multivariate analysis the presence of dysphagia is itself an
independent predictor of poor QOL.45
Behavioral treatments targeting swallowing are offered by
speech-language pathologists to not only reduce the swal-
lowing impairment but also improve swallowing-related
QOL. HNC patients receive these swallowing interventions
either prophylactically or reactively. For example, in antici-
pation of worsening swallow function both during and
following RT, prophylactic swallowing interventions are
prescribed early (before the swallow problem begins) in an
effort to maintain swallow ability and discourage disuse
Head and neck cancer survivorship needs
atrophy of the oropharyngeal musculature. Alternatively,
reactive swallowing interventions are prescribed in response
to symptoms or signs of a swallowing problem. Reactive
interventions thus aim to reverse an already impaired
swallow back to its functional premorbid state.
The benefit of targeted prophylactic swallowing therapy on
the QOL of HNC survivors has been shown in small sample,
single institution clinical trails.46 However, 2 recent systematic
reviews (1 from our group [unpublished data]) found that
despite improvements in swallow physiology and related
function, neither prophylactic nor reactive behavioral interven-
tions provided significant overall benefit to QOL.47 Further-
more, more recently a single institution study identified an
overall worsening of QOL in HNC patients from pre-RT to
3 months post-RT, although over this same period these HNC
survivors became increasing less dependent on feeding tube
and reported a consistently high level of satisfaction with their
care.48
In summary, we have evidence across several studies that for
HNC patients, impairments in swallowing and/or speech are
their primary concerns and directly associated with their report
of reduced QOL. Unfortunately, the evidence also depicts a
decline in QOL over time post-RT, which does not appear to
benefit from behavioral interventions successful in maintaining
or improving the swallow itself.
Depression and Subjective Well-
being Concerns
People affected by HNC must contend with disease and
treatment factors, psychosocial stressors, and contextual ele-
ments that exacerbate their effects.
Disease and treatment stressors include swallowing and
eating problems (eg, dysphagia), edentulism, reliance on
feeding tubes, speech problems, disfigurement, pain, and
cancer recurrence, many of which are associated with anxiety
and depression.49-61 Some HNC disease variables do not relate
systematically to distress: for example, cancer site, duration of
disease62; alternative laryngectomy procedures, types of artifi-
cial speech63; tumor stage, histologic grade51; and stage of
disease, cancer symptoms, and nutritional status.64
Psychosocial stressors exert powerful effects. Premorbid
depression is the most consistent and powerful predictor of
depression in HNC.64 HNC-related psychosocial stressors
include interpersonal concerns, uncertainty, interference with
activities, communication, fear of recurrence, stigma, concerns
about distress, concerns about disease and treatment, existential
stressors, financial issues, lack of information, and anticipated
negative surgical-consequences (eg, appearance and body-
image).65,66 Stigma exerts negative effects,67 but it is not
widespread.67,68 It is more common in lung cancer than HNC.67
Illness intrusiveness entails illness-induced disruptions to
lifestyles, activities, and interests that compromise subjective
well-being by depriving people of psychologically meaningful
activity.69 It is associated with depressive symptoms and
subjective well-being in many medical conditions,69 including
HNC.70-73 It is shaped by contextual factors (eg, affected life
67
domain, age, and stressful life events).74 Its effects are exacer-
bated by stigma.70 Adopting HNC-congruent goals and activ-
ities and relinquishing incompatible ones is associated with
lower anxiety and depression than not accommodating.75 Not
all psychosocial effects are negative, however. People with HNC
experience unexpected benefits (eg, personal growth, appreci-
ation for life, and realignment of priorities),76 which enhances
QOL.
Depression is a concern. Most people adapt well to HNC,
but many experience distress; some experience diagnosable
psychopathology. Prevalence estimates vary. Standard inter-
views and diagnostic criteria estimate major depressive dis-
order prevalence at 3.7%-20%,77-82 most are below 10%. This
is similar to estimates in many patient populations and in the
healthy public.83 Rating scale-based estimates are higher
(6.3%-58%)80,84-87; they often generate false positives, but
there are few false negatives.79
Estimated prevalence rates for other affective disturbances
include anxiety disorders (6.5%-55.4% based on
self-report84-88) and PTSD (14% based on interviews82).
Timely detection and treatment present challenges: Oncol-
ogists often overlook these disorders in HNC78,83,89 and few
people identified as requiring treatment actually receive it.86
Coping has been investigated in the context of studying
depression and its determinants. This strategy highlights
ineffective styles. Coping styles associated with depression,
anxiety, and distress include avoidant coping, self-blame,
wishful thinking, active vs passive coping, and nonexpression
of emotions,52,90,91. Perceiving humor in one’s situation
appears to reduce depression.92 Benefit finding does not relate
to depression or anxiety.93
Psychosocial resources are important. Social support
reduces distress directly94,95 and indirectly by enhancing the
confidence (ie, self-efficacy) to: (a) manage HNC symptoms
and difficulties, (b) undertake activities of daily living, and
(c) regulate emotions.94 Extensive social networks are associ-
ated with low levels of distress,52 but the evidence is incon-
sistent. In one study, “received” social support correlated
positively with depressive symptoms, but “available” support
correlated negatively.96 Self-esteem (ie, self-worth) can buffer
psychosocial stress to preserve subjective well-being.97
Psychosocial adjustment proceeds over time. In general,
anxiety, depressive symptoms, and perceived stress peak
immediately or during the first month posttreatment, declining
steadily thereafter and remaining comparatively low by 12 or 18
months or later (eg, 3 years).98-103 Self-care following disfigur-
ing surgery reduces distress.104 Self-esteem is associated with
more rapid reductions in anxiety over the first 6 months
postsurgery; high self-esteem is associated with low depression
throughout.97
In terms of psychosocial interventions, HNC patients prefer
individual one-on-one therapy as compared to group or
bibliotherapy.105,106 Nevertheless empirically evaluated inter-
ventions often adopt a group format. Nucare is an effective
nurse-led cognitive-behavioral therapy that provides training
in problem-solving, relaxation techniques, cognitive coping
skills, goal-setting, communication, social support, and life-
style factors.59,105 Another cognitive-behavioral therapy
68
intervention, Face IT, comprises 8 sessions focusing on: social
skills strategies to overcome disfigurement-related difficulties,
exposure to overcome social anxiety, and cognitive restructur-
ing. It also appears to be effective.107 Cognitive-behavioral
intervention was superior to supportive counseling for HNC
patients with PTSD, anxiety, or depressive symptoms in terms
of the proportion (33% vs 75%) who continued to meet
criteria for clinical “caseness” 12 months later,108 but in other
respects both approaches demonstrated equal benefits,. Not all
psychosocial interventions are effective, however. A nurse- and
dietician-delivered psychosocial support intervention pro-
duced no detectable improvement. In fact, the control group
reported higher global QOL at 1-year posttreatment.109
A Cochran review found no evidence that psychosocial
interventions improve HRQOL in HNC, although the
reviewed studies emphasized symptoms, function, and prob-
lems caused by cancer and its treatment rather than distress.110
Other interventions have been tried. An uncontrolled test of
a tailored computer-delivered patient-education intervention
reduced anxiety and depression in HNC,111 but an independ-
ent test failed to replicate this.112 Exercise interventions
produce significant psychosocial benefits for people with
cancer (including HNC).113 Prophylactic antidepressant med-
ications can prevent new depressive symptoms before surgery
or radiotherapy.114
Methodological weaknesses must be considered in inter-
preting this literature. One problem is measurement redun-
dancy (ie, overlapping item content in test instruments). For
example, items that tap health-related QOL (eg, the SF-36 Role
Emotional subscale), “distress,” and “disfigurement-related
distress” overlap with items in instruments that tap anxiety
and depression. This leads to spurious correlations that do not
reflect causal relations.57,115,116
Many studies rely on respondent samples of clinical con-
venience, often small, that do not represent the larger HNC
population and this threatens generalizability (eg,85). Results of
cross-sectional studies are interpreted as providing evidence of
causality (eg,117) when, of course, this is unfounded. Con-
founding of comparison groups, that is, groups that differ in
relevant characteristics (eg, severity of disease, sex, or social
support) in addition to the hypothesized explanatory variable,
introduces plausible alternative explanations (eg,97). Finally, as
noted, most studies limit their focus to negative affect and
ignore positive states (eg, happiness and satisfaction) (eg,59,98).
This results in a biased perspective, which, among other things,
obscures potential rehabilitation targets and strategies. Future
research must recognize and circumvent these pitfalls.
Cancer-related Cognitive
Dysfunction
A decline in a person’s neurocognitive abilities from their
premorbid levels can adversely alter functioning in work,
school, and interpersonal relationships, affecting QOL and
psychological well-being.118-122 HNC patients receive treat-
ments shown to be associated with neurocognitive dysfunc-
tion in other cancer populations. Neurocognitive impairment
J. Ringash et al.
is a well-known side effect in patients treated for brain tumors
and metastases as well as noncentral nervous system patients
who receive brain-targeted treatments. Cognitive impair-
ments, which typically affect learning, processing speed,
and executive functions,123-125 may be related to the malig-
nancies themselves or treatment, particularly brain irradia-
tion. For example, prophylactic brain RT is associated with
delayed cognitive impairment, with dose dependent deficits
emerging years after treatment.126,127 Patients who receive
systemic treatment, including those with breast128-131 and
hematological132,133 cancers, as well as adult survivors of
childhood cancers,126,134 are also at risk of cancer-related
cognitive dysfunction, which affects a wide range of cognitive
domains: attention, memory, processing speed, language,
and executive function.135 Deficits are less severe than in
central nervous system-targeted patients, and usually
improve gradually after treatment completion, although not
always to pretreatment levels.136 Nevertheless, persisting
symptoms significantly impact functioning and QOL.118,121
Pretreatment cognitive dysfunction in HNC
patients
A subset of noncentral nervous system cancer patients exhibits
cognitive dysfunction before treatment.137,138 The etiology of
these deficits is likely multifactorial, involving cytokine dysre-
gulation, psychological reactions to cancer diagnosis, and
nutritional or organ reserves status.139,140 HNC patients may
have a greater risk of pretreatment impairment as many HNC
risk factors, such as poor socioeconomic status and use of
alcohol and tobacco, are independently associated with
cognitive deficits.141-143 In fact, self-reported cognitive symp-
toms before HNC treatment have been demonstrated,144,145
although studies using objective measures are equivocal.146
Posttreatment cognitive dysfunction in non-
nasopharyngeal HNCs
During outpatient intensity-modulated radiation therapy
(IMRT) (þ- chemotherapy) treatment, HNC patients are at
risk of delirium.147 In addition, a small subset of patients
may have mild cognitive decline 3 months after treatment,148
and deficits (especially in learning) may worsen over
time.146,149 In a small cross-sectional study assessing patients
2 years after treatment, learning and manual dexterity speed
performance correlated with the peak dose of RT to the
temporal lobe and cerebellum, respectively.149 A recent
cross-sectional study found that 46 months after treatment,
patient-reported cognitive dysfunction was associated with
self-reported communication difficulties,150 although it is
unclear how self-reported and objective measures of cogni-
tive status align.
Posttreatment cognitive dysfunction in
nasopharyngeal cancer patients
Nasopharyngeal cancer patients may be at even greater risk for
cancer-related cognitive dysfunction than those with other
Head and neck cancer survivorship needs
types of HNC due to the additional cycles of high-dose
chemotherapy and higher levels of incidental RT to the brain
(particularly in the frontal and temporal lobes, regions that play
crucial roles in learning and memory), which can cause
cerebral radionecrosis.151 In pre-IMRT era patients, several
studies show that survivors of nasopharyngeal cancer experi-
ence cognitive dysfunction after treatment152-154 and that
memory may be worse in patients with temporal lobe
necrosis,155,156 although this is not consistent.154 In nasophar-
yngeal cancer patients treated with chemo-IMRT, one study
found no pre- vs 1 week posttreatment cognitive performance
differences.157 Another study assessed patients at baseline and
18 months later and reported impairments in short-term
memory and verbal fluency tasks, yet attention, long-term
memory, visual construction, and abstraction or judgment
were preserved.158 The severity of dysfunction correlated with
temporal lobe RT dose, consistent with what was found with
HNC generally.149 When assessed using a cross-sectional
design and a self-report measure (FACT-Cog), Kiang et al159
found the greatest symptoms in nasopharyngeal cancer
survivors who were o2.5 or 410 years after treatment.
Another cross-sectional study found that long-term survivors
who were 44 years post-IMRT are at risk of clinically
meaningful cognitive impairment and neurobehavioral
symptoms160.
Challenges and Recommendations
Although the research on cancer-related cognitive dysfunction
and its effects on QOL in HNC is extremely limited,161 current
curative treatments appear to be associated with some late and
possibly progressive neurocognitive toxicities. Improved RT
techniques to reduce temporal lobe exposure are needed. At
present, there are no effective pharmacological interventions
for cognitive preservation or recovery, but early data indicate
psycho-education, such as compensatory strategies and goal
management training, can be effective.162,163 Patients and
family members should be educated about potential short-
and long-term cognitive changes before starting treatment, as
these may cause additional distress when they occur
unexpectedly.164
QOL for HNC patients
Although the concept of multidimensional QOL instruments
designed to holistically measure the overall well-being of
patients has been recognized for over 30 years, as exemplified
by the European Organisation for Research and Treatment of
Cancer instruments (EORTC QLQ-C30/HN35),165 among
others, it is only recently that prospective QOL data from
randomized trials has become available for HNC patients.166
These data have shown that greater radiation conformality
through the use of IMRT can result in QOL improve-
ments167,168 while accelerated radiation delivery worsens
QOL in the short term (up to 3 months).169 Other strategies
evaluated with the hope of improving QOL, such as intra-
arterial delivery of chemotherapy or substitution of concurrent
69
intravenous cisplatin with epidermal growth factor inhibitors
or selective hypoxia-cytotoxic agents, did not improve QOL.
The results from these trials have confirmed findings from
nonrandomized prospective and cross-sectional studies sug-
gesting that the severe decrease in QOL related to curative
therapy (surgery; RT or chemo-RT) improves over time,
generally returning to baseline levels by about 1 year posttreat-
ment; swallowing-related QOL, however, did not show a
similar recovery.170 The finding that the overall QOL does
recover while more specific treatment toxicities remain prob-
lematic may be related to patients adapting to their impair-
ments over time (response shift)171; similar results were
previously shown for xerostomia.172 Recent data also shows
a different trajectory in HPV-associated oropharyngeal cancer
patients, with a more dramatic drop in QOL during treatment,
but also a faster recovery.173 Fortunately, ongoing cooperative
group trials in HNC, and particularly those focusing on
treatment de-escalation for good-prognosis HPV-associated
oropharyngeal cancer, are measuring QOL as a critical adjunct
to survival and disease control.
The Princess Margaret Cancer
Centre HNC Survivorship
Programme
The Princess Margaret Cancer Centre is a quaternary care
facility located in Toronto, Canada and affiliated with the
University Health Network and the University of Toronto. It
serves as a regional referral center and a national resource for
complex HNC cases; approximately 850 HNC new patients
are seen each year, with most receiving ongoing follow-up for
5-10 years. Explicit cancer survivorship efforts at our center
began with the establishment of the Electronic Living Labo-
ratory for Interdisciplinary Cancer Survivorship Research
(ELLICSR) under the leadership of Dr. Pamela Catton in
2007. Initially funded specifically for breast cancer patients,
over time ELLICSR became a nidus for cancer survivorship
generally and today, both hosts a Cancer Rehab and Survivor-
ship programme open to patients with a variety of cancer
diagnoses, and provides a variety of services (eg, physiatrist
consultation, exercise classes, patient education, a lymphe-
dema clinic) that can be accessed by referral from clinicians in
site-specific programmes.
In 2012, philanthropic funding provided an opportunity to
launch a disease and site-specific survivorship programme for
HNC. Co-led by two HNC-specialized clinicians, a radiation
oncologist (J.R.) and an advanced-practiced nurse (Maurene
McQuestion), this initiative was developed from an interdisci-
plinary, “grass-roots” and patient-focused perspective. Follow-
ing a priority-setting retreat with all stakeholders (including
patients, families, community partners, and clinicians from a
variety of professions), both Steering (Programmes) and
Research committees were established to operationalize and
initiate the stated goals. Survivors are defined as patients and
their caregivers from cancer diagnosis to death; individuals
undergoing active therapy are welcomed.
70
The focus of the programme is to complement the ongoing
work and existing programmes available through ELLICSR
and in the extended community from which patients are
drawn; to serve patients throughout the cancer journey, from
diagnosis throughout their lives; and to address the needs of
both patient and caregiver. In 2015, it was recognized as an
“Innovative Leading Practice” by Accreditation Canada, a
national body that evaluates medical facilities across all types
and disciplines.174 This programme is a work-in-progress, and
continues to change and adapt. Meanwhile, participants are
working provincially and nationally, both to build capacity in
the community to meet the needs of individuals for whom self-
management strategies are insufficient, and to translate suc-
cesses to other locations and cancers beyond HNC.
Summary and Conclusions
Individuals diagnosed with HNC, as well as their families and
caregivers, face a lifetime of challenges. Impairments due to
direct effects of the cancer, or as a result of treatment, can lead
to disabilities and, for many patients, result in reduced ability to
participate fully in their homes, workplaces, and communities.
These problems are not only physical, but also emotional,
cognitive, and perhaps spiritual in nature. Some issues occur
immediately and persist, while others may develop as delayed
consequential effects or as true late effects, even many years
after the initial diagnosis and treatment. The degree to which
such problems translate into QOL changes is modified by
coping strategies, adaptation, and social supports. A team of
experienced, specialized clinicians from a variety of disciplines
is optimal to respond to survivor needs. Further research is
needed to identify supportive care interventions which can
modify how survivors experience these problems, and to
determine when and how to provide such interventions to
maximize their effectiveness.
Acknowledgments
The authors would like to acknowledge Ms. Maurene
McQuestion for her leadership in the Princess Margaret Cancer
Centre Head and Neck Cancer Survivorship Programme. Mr.
Matthew Ramotar was instrumental in assisting with manu-
script preparation.
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