Patient perspectives on surveillance after head and neck cancer treatment: A systematic review

Abstract

Objectives
Current guidelines advise post-treatment surveillance of Head and Neck Cancer (HNC) patients should involve scheduled appointments with a variety of practitioners. Increasing numbers of HNC survivors raises the burden to provide efficient and effective care. With resource limitation there is growing importance to identify how surveillance can be justified and optimised for survivors. This systematic review presents current evidence on patient-perspectives of post-treatment HNC surveillance, aiming to inform future work putting patient priorities at the forefront of surveillance planning.

Design
MEDLINE, Embase, the Cochrane Library, NIHR Dissemination Centre, The Kings Fund Library, Clinical Evidence, NHS Evidence and NICE Clinical Evidence were searched to identify publications regarding patient-perspectives of HNC post-treatment surveillance. Studies not reporting on both surveillance and patient-perspectives were excluded.

Results
3558 citations were screened and 49 full-text articles reviewed. 16 studies were included in the final review. 3 authors reviewed all articles prior to final analysis to ensure all met inclusion criteria. Most evidence was low-quality. Study models returned included cross-sectional surveys, structured-interviews and one systematic review. Overall, positive perceptions of HNC surveillance mostly related to increased reassurance. Negative perceptions predominantly focused on anxiety and fear of recurrence, but a lack of psychological support and inadequate access to certain aspects of care were also reported.

Conclusions
This systematic review demonstrates that patients' perceptions of surveillance after HNC are mostly positive, feeling it provides reassurance. However, several studies report unmet needs, particularly regarding managing anxiety.

Full text

Clinical Otolaryngology. 2021;00:1–9. wileyonlinelibrary.com/journal/coa
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1© 2021 John Wiley & Sons Ltd.
1 | INTRODUCTIO N
Head and neck cancer (HNC) is the sixth most common malignancy
worldwide,1 with 5- year survival rates in the United Kingdom (UK)
reaching 67%.2 A constant desire exists to improve healthcare
delivery focusing on medical, functional and psychological needs.3
Essential to the ongoing management of HNC survivors is routine
surveillance.4 - 7 In the UK, current recommendations include a multi-
disciplinary approach involving clinical assessment, nutritional sup-
port, repeated histological sampling and radiological assessment
Received: 4 Februar y 2021
|
Accepted: 27 Jul y 2021
DOI : 10.1111/co a.1384 6
SYSTEMATIC REVIEW
Patient perspectives on surveillance after head and neck
cancer treatment: A systematic review
Oliver McLaren1 | Clare Perkins2 | Yinan Zhu1 | Mary Smith3 | Richard Williams1
1Universi ty Hospit al Plymout h NHS Trust,
Plymouth, UK
2Royal Cornwall Hospit al NHS Trust,
Tru ro, U K
3Royal Devon and Exeter NH S Foundation
Trust, Exeter, UK
Correspondence
Oliver McLaren, Otolaryngolgy
Department, Derriford Hospital,
Plymou th, PL6 8DH, UK.
Email: oliver.mclaren@nhs.net
Abstract
Objectives: Current guidelines advise post- treatment surveillance of head and neck
cancer (HNC) patients should involve scheduled appointments with a variety of prac-
titioners. Increasing numbers of HNC survivors raise the burden to provide efficient
and effective care. With resource limitation, there is growing importance to identify
how surveillance can be justified and optimised for survivors. This systematic review
presents current evidence on patient perspectives of post- treatment HNC surveil-
lance, aiming to inform future work putting patient priorities at the forefront of sur-
veillance planning.
Design: MEDLINE, Embase, the Cochrane Library, NIHR Dissemination Centre, The
Kings Fund Library, Clinical Evidence, NHS Evidence and NICE Clinical Evidence
were searched to identify publications regarding patient perspectives of HNC post-
treatment surveillance. Studies not reporting on both surveillance and patient per-
spectives were excluded.
Results: Three thousand five hundred fifty- eight citations were screened and 49 full-
text articles reviewed. Sixteen studies were included in the final review. Three au-
thors reviewed all articles prior to final analysis to ensure all met inclusion criteria.
Most evidence was low quality. Study models returned included cross- sectional sur-
veys, structured interviews and one systematic review. Overall, positive perceptions
of HNC surveillance were mostly related to increased reassurance. Negative percep-
tions predominantly focused on anxiety and fear of recurrence, but a lack of psycho-
logical support and inadequate access to certain aspects of care were also reported.
Conclusions: This systematic review demonstrates that patients’ perceptions of sur-
veillance after HNC are mostly positive, feeling it provides reassurance. However,
several studies report unmet needs, particularly regarding managing anxiety.
KEY WORDS
follow- up care, neoplasms, survivorship

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MC LAREN Et A L.
where necessary.8 Follow- up serves a number of functions includ-
ing assessing treatment response, identification of recurrent or new
primary disease, complication management, targeted rehabilitation
and addressing social and psychological needs of both survivor and
their family. Though both the UK and international guidelines advise
regular routine post- treatment follow- up for HNC survivors, there
is little evidence that this approach is efficacious. In the current
literature, there is only a strong evidence base to provide support
for a handful of recommendations, and therefore, the majority of
guidelines, both in the UK and elsewhere, are made up of consensus
recommendations.8,9
We can find no guidelines regarding follow- up care of HNC sur-
vivors that include the perspective of patients in decision- making
and consensus opinions.
Survivorship is ever- changing, with growing numbers of HNC
survivors globally, and it is essential that any surveillance strateg y/
guideline is underpinned by a robust research- based understanding
of patient experiences and preferences. There is no recent system-
atic review exploring the patient perspective of HNC surveillance. A
systematic review included in our study from 2005 does not include
more recent studies and does not focus exclusively on patient per-
spectives. With resource limitations, it is critical to identify ways in
which sur veillance can be optimised and justified for survivors, and
their perspective of surveillance is integral to deliver patient- focused
care. Through this study, we aim to assimilate available evidence on
patient perspectives of HNC surveillance and to gather ideas on
positive and negative perceptions of surveillance to guide further
research into patient- centred care, which in turn may be used to aid
the development of future guidelines on HNC surveillance.
2 | METHOD
2.1 | Search strategy
The search strategy was developed by study authors (OM, RW and
MS) to identify articles relating to patient perspectives of HNC sur-
veillance. The search was run in the following databases: MEDLINE,
Embase, Cochrane Central Register of Controlled Trials (CENTRAL),
HMIC / Kings Fund and NICE Clinical Evidence. The protocol for the
review was not pre- registered. The searches were run in January
2021. Limitations on the search strategy included were as follows:
Dates (2000– 2021), English language or English language translation
available. A sample search is included in Appendix A . Surveillance
and follow- up focused on continuity- of- care, monitoring, survi-
vorship and specialist s involved for HNC patients following initial
treatment.
2.2 | Inclusion and exclusion criteria
Eligible studies were those that included adults who had under-
gone treatment for any stage of HNC (chemotherapy, radiotherapy,
surgical resection, immunotherapy and any combination). Editorials,
conference abstracts and letters were excluded. Articles failing to
address the patient perspective on HNC surveillance were excluded.
2.3 | Selection of papers
Three reviewers (OM, CP and YZ) independently screened titles and
abstr acts for ‘inclu sion’ or ‘exclusion’ using th e above criteria. Ar ticles
marked ‘inclusion’ progressed for full- text review. Discrepancies be-
tween reviewers were adjudicated through the discussion to reach
consensus. If no consensus was reached, articles were referred to a
fourth reviewer (RW) for final decision. The reviewers then analysed
all full tex ts to extract key themes including anxiety, fear of recur-
rence, frequency of follow- up appointments and access to different
members of the multidisciplinary team (MDT).
3 | RESULTS
Three thousand five hundred fifty- eight articles were identified for
title review. One hundred and eighteen articles underwent abstract
review. Fort y nine publications were selected for full- text review;
16 were included in the final review. The search strategy process is
summarised in the PRISMA diagram (Figure 1).
The final 16 papers included 5 qualitative and 11 quantitative
studies conducted across the United States (3), Canada (3), UK (4),
ROI (3) and the Netherlands (3), (Table 1). The 11 quantitative stud-
ies involved cross- sectional surveys (n = 10) and a systematic review.
The qualitative studies all involved structured or semi- structured in-
terviews (n = 5).
The 16 studies were published between 2004 and 2019. All in-
volved sur vivors of HNC following completion of treatment, and
3 studies also included survivors of other malignancies.
Key Points
1. Though difficult to compare between different health-
care systems, in general, the patient perspective of
post- treatment HNC surveillance is positive.
2. Disagreement exists regarding the frequency of follow-
up, with some patients feeling that surveillance appoint-
ments are too frequent.
3. Surveillance brings significant levels of reassurance re-
garding recurrence.
4. Survivors would prefer greater access to psychological
support regarding anxiety and fear of recurrence.
5. Dental specialist s are the most frequently identi-
fied members of the MDT to whom survivors request
greater access.

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MCLA REN Et AL.
3.1 | Quality of evidence
The quality of evidence varied. Of 11 quantitative studies, a STROBE
checklist was used to assess the qualit y of the 10 observational stud-
ies. Quality ranged from low (9/22 STROBE elements) to high (20/22
STROBE elements). The solitary systematic review was assessed via
PRISMA guidelines (24/27 PRISMA elements). All qualitative studies
(n = 5) were assessed using the CASP tool, and the quality ranged
from low (5 of 9 CA SP elements) to high (9 of 9 CASP elements).
3.2 | Patient perceptions of routine surveillance
All 16 studies included information relating to the patient percep-
tions of routine surveillance following completion of the treatment
for HNC. This study focuses on qualit ative data from each of the
included studies and extraction of common themes. Results of the
individual publications included are summarised in Table 1. The key
themes elicited are explored below.
3.2.1 | Fear of recurrence
Fear of recurrence was highlighted in 11 studies as a source of anxi-
et y.10,11,12,13 ,15,17,18,19,20,21, 22 Two studies found fear of recurrence
to be particularly problematic early on in surveillance,12,17 acting
as a barrier to managing emotions surrounding cancer diagnoses.24
Eleven publications reported unmet needs regarding the manage-
ment of fear of recurrence (N = 1322).10,11,12,13 ,15,17,18,19,20,21, 22
Breaking this down further, 1 study highlighted fear of recurrence as
the top priority for patients during routine surveillance11 and fear of
recurrence lead to hyper vigilance and reduced QoL.20,21 3 of these
11 publications specifically reported that increased psychological
support was necessary to deal with elements of survivorship and
fear of recurrence10,19, 22 (N = 136). One study highlighted that posi-
tive and active engagement with surveillance was associated with
reduced fear of recurrence.20
3.2.2 | Reassurance provided by surveillance
Positive perceptions were mentioned in 12 studies (75%) including
reassurance around recurrence brought by routine appointments
and post- treatment radiological surveillance,10- 1 3 good level of tan-
gible information delivery14,1 5 and that reassurance brought about
by surveillance outweighed the anxiety before appointments.13
One study reported patients with lower disease stage found fol-
low- up more beneficial and felt a better rapport with the MDT.16
Regarding the frequency of follow- ups, up to 8 0% are happy with
the frequency of follow- up appointments.17
FIGURE 1 Flowchart. Search criteria were applied to PubMed MEDLINE, Embase, Cochrane Library, HMIC/Kings Fund and NICE Clinical
Evidence for 3558 citations. Title and abstract review yielded 49 articles for full- text review. 16 articles included in final review

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MC LAREN Et A L.
TABLE 1 Summary of included ar ticles
First author,
year Study design Study population Country Stated study aims Results FoR
Bitar 20 04
[16]
CS survey N = 569, Breast, HNC, GI, GU, Lung CA,
Lymphoma
Canada Determine whether tumour status affects
patient satisfaction with follow up
1. Patients with metastatic disease feel less
clinician support
2. Improved quality of care perceived when
focus on satisfaction for different patient
groups
-
Boyajian 2014
[10]
CS survey N = 85, Lymphoma, HNC, GI USA To determine patient preferences for follow
up after treatment for cancer
1. Strategies to cope with FOR of ten omitted
2. 90% HNC sur vivors desire a planned
follow- up schedule and information about
short and long term side effect s
3. Survivorship may benefit from individual
care plans
Yes
Crowder
2019 [25]
CS survey N = 24, HN C USA To assess patient preferences for follow
up and diet ary inter vention following
treatment for HNC
Patients agreeable to telephone counselling
for dietary needs
-
De Leeuw J
2011 [19]
Structured
interviews
N = 21, HNC Netherlands Gain insight into how the delivery of
information post treatment of HNC can
affect the adoption of advice
1. Preference for individualised strategy for
follow up
2. Patients require more psychological
support
Yes
Dunne 2019
[21]
CS survey N = 395, HN C Republic of
Ireland
Measure the impact of self- management for
HNC survivors of QoL
1. Self- management leads to skill acquisition
2. Self- management leads to hypervigilence
and reduced QoL
Yes
Dunne 2019
[20]
Structured
interviews
N = 27, HN C Republic of
Ireland
Describe how HNC sur vivors integrate self
management into daily lives
1. Psychological burden increases with less
MDT contact
2. Self management fails to address high risk
behaviour
Yes
Dunne 2018
[24]
Structured
interviews
N = 27, HN C Republic of
Ireland
Investigate the barriers to effective self
management for HNC survivors
1. Reduced self- confidence post treatment
impedes questioning during follow up
2. Greater need expressed for psychological
support
-
Geurts 2006
[13]
CS survey N = 106, HNC Netherlands Assess psychological impact of annual
radiological surveillance in HNC
survivors
The benefit of the reassurance brought
by annual imaging outweighs anxiety
surrounding results
Yes
Henry 2016
[15]
Structured
interviews
N = 29, HN C Canada Underst anding motivators for change in
behaviours for HNC survivors
1. Emotional well- being affec ts behaviour
change
Yes
Llewellyn
20 05 [14]
Structured
interviews
- UK Determine the importance of psycho- social
and behavioural fac tors on Qol following
HNC treatment
Five fac tors associated with QoL;
personality, social support satisfaction
with consultation and information,
behavioural factors (smoking/alcohol),
and depressive symptoms
-
(Continues)

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MCLA REN Et AL.
First author,
year Study design Study population Country Stated study aims Results FoR
Lubberding
2015 [22]
Structured
interviews
N = 30, HNC + Breast Netherlands To gain insight into the needs of HNC
survivors
1. Survivors unprepared for post- treatment
period
2. Survivors symptoms often unknown to
providers
3. Survivors feel referral for supportive
services is suboptima
Yes
Massa 2018
[17]
CS survey N = 100, HNC USA Assess the patient perspective on the value
and burdens of routine follow up care
1. 20% of people would prefer less frequent
follow up
2. Surveillance carries signific ant financial
burden
3. Anxiety reduces with prolonged follow up
Yes
Saroa 2018
[12]
CS survey N = 205, HNC Canada Determine information needs and
preferences of HNC sur vivors following
treatment
1. Significant reassurance brought by follow
up
2. Feel more information required about
survivorship and long term effects of
treatment
Yes
Semple 2018
[11]
CS survey N = 44, HNC UK To develop an holistic follow up clinic with
patient concern index for survivors of
HNC monitoring QoL
1. Surveillance brings significant reassurance
2. Dental specialist most sought after MDT
member
3. Benefit gained from pre- planned
discussion points
Yes
Trinidade
2012 [23]
CS survey N = 263, HNC UK Determine the patient perspective of
current follow up regimens
1. 84% of patient s feel follow up too
frequent
2. 67% felt follow up met their needs
3. Preference for CNS to deliver information
-
Wells 2015
[18]
CS survey N = 280, HNC UK Identify stressors, unmet needs and
concerns of HNC survivors
1. Demand for greater psychological support
2. Dental specialist most sought after MDT
member
3. 74% have unmet needs
Yes
FoR, fear of recurrence.
TABLE 1 (Continued)

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MC LAREN Et A L.
3.2.3 | Access to appropriate health services
Patient preference for the healthcare professional- delivering
surveillance was addressed in 6 studies.10,17,18,22,23,24 3 of these
showed a preference for routine follow- up to be performed by
HNC nurse specialists18,22,24 (N = 337, UK, ROI and USA). It was
also reported that patients looked af ter by non- HNC- specialist
nurses felt an increase in their unmet needs.24 Three studies found
patients would prefer greater access to dental specialists for the
maintenance of oral hygiene and the management of dental com-
plications associated with treatment.11,18 ,19 Those with advanced
disease reported less support from physicians and the MDT in
general.16
3.2.4 | Additional themes
In addition to the questions regarding the general perception of
routine surveillance and preference for provider type, there were
additional themes regularly mentioned. Other negative perceptions
include the frequenc y of follow- up with 20% of patients feeling that
appointments were too frequent and placed a significant burden on
their life away from HNC survival17, 23; however, as previously dis-
cussed, in one study the majority are satisfied with the frequency of
follow- up.17 One study mentioned the focus of follow- up should be
on the prevention of recurrence rather than ‘surveillance’.15 Patients
treated with chemotherapy found follow- up brought about height-
ened anxiety when compared to patients who had not undergone
chemotherapy.16 Two papers highlighted anxiet y of mentioning
problems during appointments,22, 24 and this correlates with another
paper highlighting that 74% of patients report unmet needs during
follow- up.18 Three papers explored self- management strategies,
and though there were positive perceptions regarding this, it leads
to increased anxiety, fear of recurrence and hypervigilance in some
patients.20,21,24 Treatment, tests and follow- up appointments carry a
high financial burden that can lead to patients becoming disengaged
with the follow- up process.17
4 | DISCUSSION
Following completion of HNC treatment, there are several needs
for the provision of routine surveillance: monitoring for disease
recurrence, health promotion and reducing high- risk behaviours
(alcohol- use and smoking), identifying and managing side effects of
treatment and also providing supportive/psychological care for sur-
vivors and their families. The 16 publications included offer insights
into the perspective of survivors on current HNC surveillance. In
general, attitudes towards surveillance are positive due to the reas-
surance that surveillance brings in survivors remaining cancer free,
and most articles report on the importance of focus on disease re-
currence. However, a large proportion of the ar ticles report unmet
needs in managing fear of recurrence with many patients feeling
that psychological input and suppor t would be of benefit during
surveillance.
The question of the patient perspective on surveillance has
far- reaching implications. All the articles show there is room for
improvement in the deliver y of follow- up care, and seven articles
implied there was insufficient written and/or verbal information for
survivors during the follow- up process,10,12,14,15,18,19,2 2 and those
who had greater levels of information had better QoL.14
The optimal strategy for HNC surveillance remains debated,
with developments in disease sub- type (emergence of HPV related
disease) and improvements in survival rates, and the importance of
patient- cent red approache s is growing. For specia list HNC provider s,
the primary goal of sur veillance was the detection of residual/recur-
rent disease, though for survivors, the aims may be complimentar y
but not necessarily identical. This review suggests survivors would
prefer greater information about recover y, enhanced access to allied
healthcare professionals and greater focus on psychological recov-
ery; the reassurance of a disease- free state is of high importance
but not their only priority. There exist s the underlying theme that
survivors would prefer a ‘tailor- made’ approach to their surveillance.
Despite these comments, few of the studies offer any t angible way
of developing tailor- made services. Though one study suggested
some survivors prefer telephone follow- up, this was limited to di-
etetic advice rather than monitoring of disease recurrence with HNC
clinicians.25 Boyajian et al. suggested a tiered system, whereby a set
of core issues were identified (appointment planning, monitoring
investigations, information regarding side effec ts and strategies for
fear of recurrence) and once satisfactorily met further issues and
needs could be addressed as highlighted by individuals as being of
importance.10 This approach would allow patients to have input into
their own priorities once the core aspec ts of surveillance had been
addressed.
Half of the included studies surveyed/interviewed less than
100 survivors, with the increasing prevalence of HNC larger studies
is required to make more generalised conclusions. The largest study
within this review included 569 patients with different malignancies
(HNC, breast, GI, GU, lung and lymphoma) and focused on the dif-
fering perceptions of patients with varying stages of disease and,
therefore, is not directly transferrable to HNC populations.16 The
same can also be said for t wo other studies that surveyed survivors
of other malignancies.10,22
Significant variability existed in the survey tools utilised across
articles. Of the 10 studies involving cross- sectional surveys, 5 uti-
lised recognised surveys but used different tools in each study
(Patient Concerns Inventor y was used in conjunction with other sur-
veys in 2 studies), and the remaining 5 curated individualised surveys
tailored to the aims of their specific study. This makes extrapolation
of results to broader populations very difficult and certainly calls for
greater standardisation of survey tools to answer the question of pa-
tient perceptions of HNC . The recognised sur vey tools used inclu ded
the following: Quality of Life of Adult Cancer Survivors (QLACS),18
Head and Neck Information needs Questionnaire (HANIQ),12 Patient
Concerns Inventory (PCI),11,18 Functional Assessment of Cancer

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MCLA REN Et AL.
Therapy (FACT- G),21 Patient Satisfaction with Doctor Questionnaire
(PSQ- MD)16 and the Head and Neck Health- Related Quality of Life
Questionnaire (UWQOLv4).11
In 2020, a collaborative project (INTEGR ATE and The British
Association of Head and Neck Oncolog y) performed a national
audit of current practice for surveillance in the UK and highlighted
a few key points that mirror some of the themes identified in this
systematic review9; there were low levels of information delivery
and little advice regarding avoidance of high- risk behaviours. There
was also low compliance with national guidance on multidisciplinary
clinics with the availability of allied healthcare professionals. This
may explain why many survivors feel that they have unmet needs
and feel that they require greater levels of information. It was also
found that if patients were to expedite their appointments with new
symptoms, this was more likely to herald residual or recurrent dis-
ease rather than routine- surveillance appointments.9 This final point
perhaps implies that there may be the impetus to change the current
practices of routine surveillance to a patient- centred/driven model
where appropriate.
This review includes studies involving both qualitative and quan-
titative methodologies. In our study, we focus on extracting the
qualitative data themes. Though currently more challenging to draw
comparisons between qualitative studies, it may be that qualitative
research allows for a greater understanding of patient perspectives
that may ultimately introduce new focuses for surveillance. This re-
view highlights that there is scope for more work to be done in this
field and an appetite from survivors to be involved in research to an-
swer questions regarding HNC follow- up care. Henry et al. were the
only included study to utilise focus groups to answer the questions
posed by their specific study, namely to understand the needs and
experiences of HNC survivors.15 These focus groups were however
small in number involving between 2 and 5 participants in each focus
group. This again limits the generalisability of study findings to wider
populations.
This systematic review presents all the evidence related to the
patient perceptions of post- treatment HNC surveillance. Levels of
evidence were generally low quality as there were no randomised
trials, and most studies involved cross- sectional questionnaires or
structured interviews. Despite this, there were themes and conclu-
sions to be drawn across the evidence presented in this review.
This systematic review has limitations. Taking information from
studies performed across a variety of healthcare symptoms makes
the generalisability of findings difficult. Patient perspectives are
subjective to the individual reporting them at any given time mean-
ing that reproducing these findings in different studies may be chal-
lenging. This may account for a degree of heterogeneity reported in
perceptions across different studies, such as whether needs were
generally met or unmet.18,23 At tempts to reduce bias in this review
were made by developing a review protocol with multiple authors
involved at all steps of the selection and data extrac tion stages. The
inclusion of qualitative studies in a systematic review is difficult
where theme, rather than data, extraction is required. It is, however,
essential to include these qualitative studies as they can provide
clinical information relating to patient perspectives that cannot be
gleaned from quantitative data.
5 | CONCLUSION
This systematic review indicates that though most patients hold
positive views of their current surveillance regimes, particularly as a
mechanism for providing disease- free reassurance, there exist com-
mon themes in improving a patient- centred approach. Most of the
studies included highlight the importance of focusing on the psy-
chological, as well as physical needs of the patient, particularly with
regard to fear of recurrence. There is some disagreement on the fre-
quency of follow- up among different studies, with some data show-
ing patients are happy with the frequency of their sur veillance,17 and
some feel that they are being seen too often, impacting their QOL.23
The involvement of all relevant members of the MDT for the dura-
tion of surveillance is important in order to meet holistic needs of
patients, with improved access to dental team members identified
as the most sought after.
CONFLICT OF INTEREST
No conflicts of interest are declared.
AUTHOR CONTRIBUTION
Oliver McL aren: Lead auth or, c ritical review of ar ticles. Clare P erkins:
Second author, critical review of articles. Yinan Zhu: Critical review
of articles. Mary Smith: Lead librarian, assisting in search develop-
ment. Richard Williams: Supervising consultant, critical appraisal of
articles.
ORCID
Oliver McLaren https://orcid.org/0000-0002-1907-3854
Clare Perkins https://orcid.org/0000-0002-2339-8758
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M, Williams R. Patient perspectives on surveillance after
head and neck cancer treatment: A systematic review. Clin
Otolaryngol. 2021;00:1– 9. htt ps://doi .or g/10.1111/coa.13846
APPENDIX A
Database: Ovid MEDLINE(R) ALL <2000 to January 10, 2020>
Search Strategy:
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
- - - - - - -
1 exp Otorhinolaryngologic Neoplasms/ (90270)
2 "Head a nd Neck Neoplasms"/px or "Head an d Neck Neoplasms"/
th (8828)
3 Neck Dissection/ (7903)
4 exp Lar yngectomy/ (9876)
5 (HNSCC or SCCHN or laryngotom* or (neck and dissect*)).ti,ab.
(25574)
6 Neoplasms/ (444231)
7 (cancer* or carcinoma* or neoplas* or tumor* or tumour* or ma-
lignan* or SCA A).ti,ab. (3472936)
8 ("head and neck" or "head neck" or "head- neck" or "head- and-
neck" or oral or oropharyn* or hypopharyn* or laryn* or nasopharyn*
or pharyn* or throat or mouth).ti,ab. (936973)
9 6 or 7 (3568645)
10 8 and 9 (219233)
11 1 or 2 or 3 or 4 or 5 or 10 (279608)
12 exp Population Surveillance/ (71928)
13 surveillance.ti,ab. (193223)
14 exp "Continuity of Patient C are"/ (259399)
15 ("continuity of patient care" or "patient care continuit y" or
"continuum of care" or "care continuum" or "continuity of care" or
"care continuity" or surviv* or "follow* up").ti,ab. (2163394)
16 exp Survivors/ or exp Cancer Survivors/ (34661)
17 exp Follow- Up Studies/ (665134)
18 12 or 13 or 14 or 15 or 16 or 17 (2884699)
19 exp "Patient Acceptance of Health Care"/ (161324)
20 ("health care utili*" or "acceptor characteristic* or acceptor*
or program* acceptability or (method* adj accetab*) or nonaccep-
tor* or acceptability of health care or health care acceptabilit y or
acceptability of healthcare or health* seeking behavio* or patient
adherence or patient cooperation or patient non- compliance or
patient non compliance or patient nonadherence or patient non-
compliance or patient non- adherence or patient non adherence
or (patient* adj2 involv*) or (patient* adj2 empower*) or patient
participation rate* or patient activation or (engag* adj2 patient*)
or patient preference* or (refus* adj2 treat*) or patient elope-
ment* ).ti,ab. transformed to (health care utili* or acceptor char-
acteristic*" or acceptor* or "program* acceptability" or (method*

|
9
MCLA REN Et AL.
adj accetab*) or nonacceptor* or "acceptability of health care"
or "health care acceptability" or "acceptabilit y of healthcare" or
"health* seeking behavio*" or "patient adherence" or "patient co-
operation" or "patient non- compliance" or "patient non compli-
ance" or "patient nonadherence" or "patient noncompliance" or
"patient non- adherence" or "patient non
adherence" or (patient* adj2 involv*) or (patient* adj2 empower*)
or "patient participation rate*" or "patient activation" or (engag* adj2
patient*) or "patient preference*" or (refus* adj2 treat*) or "patient
elopement*").ti,ab. (147502)
21 exp Attitude to Health/ (438068)
22 exp Health Knowledge, Attitudes, Practice/ (117962)
23 exp Health Services Misuse/ (12108)
24 (health adj2 attitude*).ti,ab. (4282)
25 ("misuse of health services" or "health service* misuse"
or "abuse of health services" or "overutili* of health services" or
(unnecessary adj2 procedure*) or (surg* adj2 unnecessary)).ti,ab.
(5554)
26 Psychology/ (23718)
27 exp Decision Making/ (212130)
28 (mak* adj2 decision*).ti,ab. (183280)
29 exp Communication/ (324593)
30 exp Information Seeking Behavior/ (2758)
31 Narration/ (8863)
32 Negotiating/ (6586)
33 exp Communication Barriers/ (6963)
34 exp Health Communication/ (2739)
35 Disclosure/ (14091)
36 exp Information Dissemination/ (17872)
37 exp Information Literacy/ (7076)
38 exp Interdisciplinary Communication/ (17773)
39 exp Social Networking/ (4622)
40 ("personal communication" or misinformation or "communi-
cation program*" or "communications personnel" or "information
seeking behavio*" or narration* or "narrative medicine" or "narrative
ethics" or negotiation* or mediati* or arbitrat* or (conflict adj1 resol*)
or (communication adj2 barrier*) or "language barrier*" or "health
communications" or (information adj2 disclos*) or (financ* adj2 disc-
los*) or "duty to warn" or (information adj2 distribut*) or (information
adj2 shar*) or (information adj2 disseminat*)).ti,ab. (177722)
41 (data adj2 shar*).ti,ab. (7785)
42 ("information literac*" or "health literacy" or "interdisciplinary
communication*" or "multidisciplinary communication*" or "cross
disciplinary communication*").ti,ab. (10579)
43 exp Professional- Patient Relations/ (145117)
44 ("professional patient relations*" or "professional- patient re-
lations*" or "contact* clients" or recontact* or "duty to follow up"
or "nurse patient relations*" or "nurse- patient relations*" or "physi-
cian patient relations*" or "physician- patient relations*" or "doctor
patient relations*" or
"doctor- patient relations*" or "investigator subject relations*" or
"researcher- subject relations*").ti,ab. (7660)
45 exp Researcher- Subjec t Relations/ (1071)
46 (expectation* or preference* or attitude* or view or views or
perspective*).ti,ab. (1075545)
47 Attitude/ (48887)
48 exp Patient Satisfaction/ (93795)
49 19 or 20 or 21 or 22 or 23 or 24 or 25 or 26 or 27 or 28 or 29 or
30 or 31 or 32 or 33 or 34 or 35 or 36 or 37 or 38 or 39 or 40 or 41
or 42 or 43 or 44 or 45 or 46 or 47 or 48 (2310705)
50 11 and 18 and 49 (4608)
51 limit 50 to (english language and yr="2000 - Current") (3488)
52 trinidade*.au. (84)
53 51 and 52 (2)
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