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.