Thisreview syntheses the evidence related to information resources and informationneeds of HNC patients during diagnosis and treatment. Reported evaluations ofHNC 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 educationand support needs is challenging within clinical practice. Moreover, thecurrent literature focuses on unmet information needs of HNC patients and noton other aspects of information understanding which includes the format,readability, and delivery of the information 31. Existingevidence indicates information for HNC patients is provided via several media:verbal, written, and audio-visual material. Patients and caregivers expressed apreference 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 totheir personal situation, although many were left with unanswered questions 11,32. Verbalcommunications alone are commonly misunderstood and/or forgotten by patients.
Writteninformation reinforces verbal information, improving understanding and recallof treatments and potential complications 23. Patientsneed information concerning: illness, treatment, side-effects, physicalfitness, impact on functioning, duration of recovery time and impact on qualityof life. A patient information pathways can assist delivering information and providea guide to rehabilitation and survivorship 33. Recognisingemotional distress experienced by HNC patients highlights the importance of psycho-educationto improve quality of life and psychological functioning 34. HNCpatients as a group are more susceptible to psychological distress of treatmentrelated to body image and disfigurement, changes in sexuality, and difficultieswith eating and communication. Specifically, depression seems to increaseduring treatment, with approximately a third of patients presenting at or aboveclinical levels by treatment end 35,36.Implementing a well-designed psycho-educational intervention leads tosignificant improvements in patient reported outcomes such as physicalfunctioning, social functioning, global functioning, fatigue, and sleepdisturbance 22.
Moreover providing tailored information on symptoms of anxiety and depressionrevealed those without the information intervention were significantly morelikely to be diagnosed with clinical depression three months later 37. Designingwritten information for patients that is both understandable and comprehensiveis time consuming and requires effort. It requires establishing appropriatereadability levels by involving patients to ensure the majority of patientsfind the content clear, comprehensive, and useful. Patient satisfaction withinformation provision will enhance partnerships in care and the quality of lifefor patients and their relatives; therefore, indirectly being a cost-effectiveintervention within the health-care system. Audio-visualeducational tools in HNC may offer a thorough explanation of treatment, side-effects,post-treatment, and follow up arrangements. There are high levels of use andsatisfaction with patient education videos, particularly with the elderlydemographic finding it more relevant and informative and an adjunct to writteninformation 38. Mostwritten preoperative instructions are not understood by patients, with a largevariation in the information patients require about their HNC.
There has beenan increase in demand for information beyond medical procedures or treatments,emphasising the importance of quality of life post treatment. Previously it wassuggested patients with HNC wanted more information about the impact of theirtreatment and treatment options, rather than specific details of the operation.It has been articulated that unmet information needs and low satisfaction withinformation are related to unfavourable patient outcomes, such as lowerhealth-related quality of life (HRQOL), higher levels of depression andanxiety, and the use of maladaptive coping strategies.
Therefore, it isimportant to address unmet information needs before starting treatment. Informationneeds of HNC patients vary according to the stage of diagnosis with patients demonstratingmoderate to high information needs before treatment, dropping to low tomoderate levels a year post treatment 12. Patientswith a strong illness identity, weaker perceptions about the personalcontrollability of the illness, and a weak sense of coherence/understanding oftheir illness were less likely to be satisfied with the information received 19.Patients reporting lower satisfaction pre-treatment were more likely to havelower global QOL scores and high levels of depression post-treatment. Patientswho were less satisfied with information before treatment were more likely tobelieve treatment was less necessary and they less able to control theirillness, suffer more symptoms and feel that the consequences of the illnesswere greater 19. Themajority of the literature is based on verbal, written and audio-visualmaterial given by healthcare professionals directly to patients. Theavailability and convenience of the internet has created multiple HNC IPEMs accessiblein the patient’s own time 39.There are multiple HNC websites available, although none have been rigorouslyevaluated.
The benefits of the internet compared to traditional media is thatit provides a live and easily updatable resource to inform patients, connectthem with healthcare professionals and other patients, and serve as referencematerial. Moreover the convenience of the internet avoids the long waiting roomtimes and allows more freedom to undertake daily activities40. Somelimitations of IPEMs include, the high readability level of content, minimumcompetence in navigating the internet being required, and/or the informationprovided may be misleading or misinterpreted 41. Despitethe volume of information on HNC, there is a wide variability in content anddelivery of these resources and in the HNC patient demographic 31.
Patient internet searches can be overwhelming, contradictory, confusing, orout-of-date. The benefit of centralised, rigorously evaluated patientinformation sites will identify unmet information needs of patients, deliverinformation that is comprehensive, understandable, and relevant in a navigableformat to enhance current practice. Ourreview has several limitations. The meta-synthesis was challenging due to theheterogeneous nature of information related questions posed, methodologyemployed, and outcomes assessed.
Consequently, synthesis and interpretation wasdifficult. The study designs were largely single-arm rather randomisedcontrolled evaluations of interventions, thus substantial investment in morerigorous research in this area is needed. Thirdly, many studies included small sample sizes rendering theminsufficiently powered to draw robust conclusions. Furthermore, the proportion of head and neckcancer patients in some studies was small and may not have been sufficientlyrepresentative of HNC patients as a group.