The verbal information was valued over written

The
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articles were excluded because they were not peer-reviewed or written in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).

 

Quality review

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Overall
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

Information
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.

 

In
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
provided.

 

Three
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

 

Alternative
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
provider.

 

Information
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%.

 

In
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
18.

 

Satisfaction with
information

Two
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
21.

 

A
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.

 

A
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.

 

Usage
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.

 

Two
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.
  

 

Information recall

Chan
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
education websites

The
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.