Background: Head and neck cancer encompasses wide variety of
malignant tumours. The affected patient
populations, treatments, side effects, and prognoses are diverse. Consequently,
providing appropriate and tailored education to patients during different
stages of diagnosis and treatment is a challenge. The
aims of this review was to: i) describe the evidence regarding information content
provided to head and neck cancer patients; and, ii) determine the information
needs of head and neck cancer patients.
A systematic search of Medline Ovid, PsychINFO and CINAHL databases was
conducted for literature between January 1946 to October 2015. Mesh terms used
were “head and neck” AND “cancer” OR “neoplasm” AND “patient education”. Article
titles and abstracts were independently screened for inclusion by one author. Data
extraction and quality ratings were completed by three authors and inter-rater
reliability was excellent. Moreover, an
internet search through the Google and Yahoo search engine was used to identify
head and neck cancer patient education materials available online.
A total of 361 studies were retrieved and after review, 24 studies were
identified as relevant. HNC patients and caregivers
want understandable and accessible information about Head and Neck cancer, and particularly
survivorship. Provision of resources that are appropriate is associated with
improved patient satisfaction with the healthcare professionals’ care.
Providing the right amount and content of information may act to reduce levels
of emotional distress, anxiety and depression associated with HNC diagnosis and
Word count: 236
Condensed abstract: Providing appropriate and tailored education to HNC
patients before, during, and after treatment is a challenge. Providing
the right amount and content of information may act to reduce levels of
emotional distress, anxiety and depression associated with HNC diagnosis and
and neck cancer, patients, consumer health information, education, social
and neck cancer (HNC) represents a diverse group of tumours linked by anatomical
proximity. Combing all forms, including mucosal, cutaneous, thyroid, and
salivary cancers, HNC is one of the most common cancers in the world 1. Increased
oropharyngeal cancer rates have been observed during the last three decades 2. The
annual incidence of head and neck cancers worldwide is more than 550,000 with a
high burden of morbidity and around 300,000 deaths each year 3, with
more men than women diagnosed with and dying from the disease. With advances in
diagnosis and treatment, the number of patients living with this disease is
increasing. Survival across HNC types are variable, with cancer of the larynx
having the lowest five-year survival rate 4.
Increasing survival makes educational material on late effects of cancer and
its treatment, including psychosocial care, essential to support optimal
outcomes in survivors 5.
care of cancer patients consists of both education and supportive care.
Supportive care extends beyond physical and symptom support and includes social
support, psychologic care, spiritual needs, and information 6.
To date the literature regarding
educational needs of HNC patients and interventions to support these has not
been systematically reviewed. This study
aimed to determine: (1) evidence of what information is provided to head and
neck cancer patients during treatment and survivorship phases of care; and, (2)
the information needs of head and neck cancer patients during diagnosis,
treatment, and survivorship.
Word count: 238 words
Data sources and search strategy
This meta-synthesis was conducted following the
Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA)
guidelines 7. A systematic search of Medline Ovid, PsychINFO, and
CINAHL databases including period January 1946 to October 2015 was conducted in
November 2015. Mesh terms used were “head and neck” AND “cancer” OR “neoplasm”
AND “patient education”. Initial search results from the
databases were merged and duplicates identified and removed (Figure 1). Quality
review was measured using pre-specified criteria for qualitative and
quantitative studies 8. Inter-rater reliability was undertaken to determine
consistency in quality review between reviewers.
extraction, quality review, and synthesis
were extracted by three reviewers (JJ, HD, HS) and discrepancies resolved by discussion
to achieve consensus. A formal meta-analysis was not undertaken due to the
diverse outcomes and measures reported in the included studies. All included
studies were assessed for quality using the criteria described in Kmet 8.
Internet patient education
materials and selection of websites
In June 2017, an internet search using the
two most popular search engines (Google and Yahoo) was used to identify internet
patient education materials (IPEMs). The four search terms “head and neck
cancer patient information” were used in the advanced search setting. We
examined the first 20 English language websites identified in the combined
Websites were included if they: targeted the patient or caregiver populations;
and, were authored by a healthcare professional or reviewed by a board of
count: 243 words
search strategy generated 361 titles; 30 duplicates were identified; a further 20
articles were excluded because they were not peer-reviewed or written in
English. We retrieved 311 articles for eligibility
review, 24 were retained as relevant to HNC patient education and support needs
(Figure I and Table I).
the methodological quality of the quantitative studies was high with a mean
quality rating of 0.73 (Table II). The qualitative studies had a mean rating of
0.74 (range: 0.25-0.95), notably the qualitative studies were older ranging
from 1995 to 2000 (Table III). Inter-rater reliability between reviewers (JJ,
HD, HS) across all studies was in the excellent range (?= 0.85).
Unmet information needs
provided at the time of diagnosis and treatment decision-making was
investigated in two studies 10,11.
Newell et al. interviewed twenty-nine patients regarding their experience of
the pre-operative consultation and information provision. Usage of medical and
technical terms adversely affected participant’s ability to understand
information provided. The shock of diagnosis made processing information
difficult. Depression several months after surgery was reported, as patients
realised the reality of lifestyle changes being long-term and contributing to
their survival experience.
a qualitative study Pollock et al. found verbal information was valued over
written 11. This
was related to participant’s preference to receive information that is specific
and tailored to their circumstances. Participants described a preference for
tailored information delivered in stages appropriate to their experience of
treatment. The written information was viewed as a ‘back up’ to information
delivered verbally. This desire for written information was further
demonstrated in a study by Pollock et al. which explored patients’ (n=12 HNC
patients and n=15 lung cancer patients) experience of receiving information
about cancer using interviews and the Information Satisfaction Questionnaire
(ISQ) 11. Most
(85%) respondents were satisfied or very satisfied with the information
cross-sectional studies investigated unmet information needs of HNC patients
revealing need for information about disease, treatment, access to help, and
solutions 12-14. Newly
diagnosed patients required higher information needs than patients currently
undergoing treatment.14 Prior
to consenting to a procedure patients wanted information about the procedure
risks and benefits and disease prognosis. Most patients (84%) wanted detailed
information about treatment (63%), information about the disease (56%) followed
by information about procedural risks (31%).13
approaches to meeting information needs have included the impact of advanced
practice nurses (APN) providing information to patients at home 15.
Nurses intervened in response to patient needs and documenting these needs in
patient records. Topics on postoperative
physical care were heterogeneous amongst the cancers and included: wound care,
skin care, postoperative activity restrictions and recommendations, diet to
promote wound healing, action and side effects of prescribed medications
including pain medications, prevention and management of narcotic-induced
constipation, and adverse events and symptoms to report to the primary care
need on illness trajectory before surgery and post-operative expectations was emphasised
in a prospective study of 32 patients by Glavassevich et al. 16. Most patients stated they were unprepared for
some post-operative side effects including neck stiffness, loss of sensation in
the neck area, scarring, and fistulas despite 75% recall by patients receiving information
about postoperative course prior to surgery. In most cases, fear and anxiety
were not addressed prior to surgery, while symptoms addressed were pain 47%,
difficulty breathing 57%, difficulty swallowing 47%, difficulty speaking 35%,
and changes in appearance 28%.
Van der Meulen et. al’s evaluation an educational intervention delivered by a
nurse on post-discharge information, patients demonstrated information needs concerning:
disease, treatment, side-effects, physical fitness, daily functional impact, post-operative
recovery time, and impact on quality of life 17. When
HNC patients had no education on oral health hygiene they reported low regular
flossing (58%) and cleaning of dentures (50%) without education in these patients
studies have studied information provision by measuring satisfaction through a
de novo was Satisfaction with Cancer Information Profile (SCIP) questionnaire19,20. The prospective
single arm study with the same cohort, demonstrated low satisfaction before
treatment was predictive of depression months (6-8) after treatment ended. Information
needs that were unmet included: financial support advice, patient support
groups, coping with treatment side-effects, ability to work, and how treatment
may affect quality of life (QoL) and long-term performance20. In
another prospective study, providing an education tool pre-operatively was
associated with high satisfaction with information and helped reduce patient anxiety
feasibility study investigating a psycho-educational intervention aimed at
teaching 50 HNC patients how to cope with their cancer demonstrated significant
improvement in: physical (p=0.002) and social (p=0.02) functioning; global QOL
(p=0.007); and, reduced fatigue (p=0.01) and sleep disturbance (p=0.04).22
Patients with lower education (p=0.02) and early stage disease (p=0.045) were
more likely to drop-out of the study. Interviews with 133 patients reported higher
scores on the Patient Information Needs Questionnaire (PINQ) to be associated with
higher levels of anxiety, more depression, and more psychological complaints 12.
prospective single arm study assessed the utility of an information booklet. 23 Most
of the patient/relative group reported the information was detailed (57%),
beneficial (67%), and the terminology appropriate (83%) 23. Two
prospective studies investigated satisfaction with a video about radiation
therapy 24,25. Education videoes provided novel information
to patients but failed to significantly increase knowledge 25.
Patients in one study were satisfied with the information about the simulation
procedure, preparing for procedures, reactions to treatment, appointment times,
and what happens after their treatment 24.
of an electronic health information system for support was evaluated in
thirty-six post-operative HNC patients26. The
usage of the support system was high with 33 (92%) of patients aware of having
received a reply from team support and 94% satisfied with the reply. “Appreciation”
of the system was assessed with a mean score of 8/10.
studies used differing educational interventions, one traditional information
delivery system of tailored information to HNC and lung cancer patients at
different stages of their cancer journey; and the other a tailored online patient
education project (PEPTalk) in breast cancer, diabetes and HNC patients 27,28.
Atack et al. had participants complete a Perceived Health Web Site Usability
Questionnaire which revealed a high satisfaction with the website (mean score
87/100), ease of use (85/100), and improving knowledge about health (94/100) 27.
Results of both the previous educational interventional studies were consistent
in that most respondents valued personally tailored information for diagnosis,
treatment, and recovery. For most respondents, written information served as
reference material, reinforcing verbal communication. There was significant
concern regarding the side effects of treatment. However, patients often
preferred to let professionals decide what they should be told and needed to
know, with some indicating a clear preference to not know about poor prognosis.
et al. conducted a randomised controlled trial investigating the effect of a pre-operative
written information page on surgery, including diagrams, on recall of surgical
risks. The recall of potential risks in the intervention group was
significantly higher at 50% compared to 30% for the control group 29. Another prospective pre-and post-test
quantitative study evaluated the effect of an educational tool on oral hygiene performance.
The study involved n=19 patients and demonstrated an improvement in self-care
behaviours and patients’ ability to request for pain medication 30.
Head and neck cancer patient
first 20 websites for IPEM identified in our web search are summarised in table
IV. None have been cited in the literature which is peer reviewed and there
have been no reported assessments of their capacity to address unmet
information needs of HNC patients.
count: 1252 words
review syntheses the evidence related to information resources and information
needs of HNC patients during diagnosis and treatment. Reported evaluations of
HNC patient educational interventions have employed heterogeneous methodology,
resulting in variable study quality, and strong risk of bias 17,23,25,29,30.
Interpreting the literature, translating, and applying it to patient education
and support needs is challenging within clinical practice. Moreover, the
current literature focuses on unmet information needs of HNC patients and not
on other aspects of information understanding which includes the format,
readability, and delivery of the information 31.
evidence indicates information for HNC patients is provided via several media:
verbal, written, and audio-visual material. Patients and caregivers expressed a
preference for verbal information delivered by their healthcare professionals,
supplemented by written information as a reference resource for the future 28.
Verbal information provided patients with tailored information specific to
their personal situation, although many were left with unanswered questions 11,32.
communications alone are commonly misunderstood and/or forgotten by patients. Written
information reinforces verbal information, improving understanding and recall
of treatments and potential complications 23. Patients
need information concerning: illness, treatment, side-effects, physical
fitness, impact on functioning, duration of recovery time and impact on quality
of life. A patient information pathways can assist delivering information and provide
a guide to rehabilitation and survivorship 33.
emotional distress experienced by HNC patients highlights the importance of psycho-education
to improve quality of life and psychological functioning 34. HNC
patients as a group are more susceptible to psychological distress of treatment
related to body image and disfigurement, changes in sexuality, and difficulties
with eating and communication. Specifically, depression seems to increase
during treatment, with approximately a third of patients presenting at or above
clinical levels by treatment end 35,36.
Implementing a well-designed psycho-educational intervention leads to
significant improvements in patient reported outcomes such as physical
functioning, social functioning, global functioning, fatigue, and sleep
Moreover providing tailored information on symptoms of anxiety and depression
revealed those without the information intervention were significantly more
likely to be diagnosed with clinical depression three months later 37.
written information for patients that is both understandable and comprehensive
is time consuming and requires effort. It requires establishing appropriate
readability levels by involving patients to ensure the majority of patients
find the content clear, comprehensive, and useful. Patient satisfaction with
information provision will enhance partnerships in care and the quality of life
for patients and their relatives; therefore, indirectly being a cost-effective
intervention within the health-care system.
educational tools in HNC may offer a thorough explanation of treatment, side-effects,
post-treatment, and follow up arrangements. There are high levels of use and
satisfaction with patient education videos, particularly with the elderly
demographic finding it more relevant and informative and an adjunct to written
written preoperative instructions are not understood by patients, with a large
variation in the information patients require about their HNC. There has been
an increase in demand for information beyond medical procedures or treatments,
emphasising the importance of quality of life post treatment. Previously it was
suggested patients with HNC wanted more information about the impact of their
treatment and treatment options, rather than specific details of the operation.
It has been articulated that unmet information needs and low satisfaction with
information are related to unfavourable patient outcomes, such as lower
health-related quality of life (HRQOL), higher levels of depression and
anxiety, and the use of maladaptive coping strategies. Therefore, it is
important to address unmet information needs before starting treatment.
needs of HNC patients vary according to the stage of diagnosis with patients demonstrating
moderate to high information needs before treatment, dropping to low to
moderate levels a year post treatment 12. Patients
with a strong illness identity, weaker perceptions about the personal
controllability of the illness, and a weak sense of coherence/understanding of
their illness were less likely to be satisfied with the information received 19.
Patients reporting lower satisfaction pre-treatment were more likely to have
lower global QOL scores and high levels of depression post-treatment. Patients
who were less satisfied with information before treatment were more likely to
believe treatment was less necessary and they less able to control their
illness, suffer more symptoms and feel that the consequences of the illness
were greater 19.
majority of the literature is based on verbal, written and audio-visual
material given by healthcare professionals directly to patients. The
availability and convenience of the internet has created multiple HNC IPEMs accessible
in the patient’s own time 39.
There are multiple HNC websites available, although none have been rigorously
evaluated. The benefits of the internet compared to traditional media is that
it provides a live and easily updatable resource to inform patients, connect
them with healthcare professionals and other patients, and serve as reference
material. Moreover the convenience of the internet avoids the long waiting room
times and allows more freedom to undertake daily activities40. Some
limitations of IPEMs include, the high readability level of content, minimum
competence in navigating the internet being required, and/or the information
provided may be misleading or misinterpreted 41.
the volume of information on HNC, there is a wide variability in content and
delivery of these resources and in the HNC patient demographic 31.
Patient internet searches can be overwhelming, contradictory, confusing, or
out-of-date. The benefit of centralised, rigorously evaluated patient
information sites will identify unmet information needs of patients, deliver
information that is comprehensive, understandable, and relevant in a navigable
format to enhance current practice.
review has several limitations. The meta-synthesis was challenging due to the
heterogeneous nature of information related questions posed, methodology
employed, and outcomes assessed. Consequently, synthesis and interpretation was
difficult. The study designs were largely single-arm rather randomised
controlled evaluations of interventions, thus substantial investment in more
rigorous research in this area is needed.
Thirdly, many studies included small sample sizes rendering them
insufficiently powered to draw robust conclusions. Furthermore, the proportion of head and neck
cancer patients in some studies was small and may not have been sufficiently
representative of HNC patients as a group.
count: 1,011 words
materials for HNC patients need to be clear and accessible. Patients desire information
that is understandable, comprehensive and available in a multiplicity of formats
but tailored to their individual condition. Delivery of high quality information
has been associated with overall satisfaction with care.