Abstract of emotional distress, anxiety and depression associated with

Abstract Background: Head and neck cancer encompasses wide variety ofmalignant tumours.  The affected patientpopulations, treatments, side effects, and prognoses are diverse. Consequently,providing appropriate and tailored education to patients during differentstages of diagnosis and treatment is a challenge.

Theaims of this review was to: i) describe the evidence regarding information contentprovided to head and neck cancer patients; and, ii) determine the informationneeds of head and neck cancer patients.Methods:A systematic search of Medline Ovid, PsychINFO and CINAHL databases wasconducted for literature between January 1946 to October 2015. Mesh terms usedwere “head and neck” AND “cancer” OR “neoplasm” AND “patient education”. Articletitles and abstracts were independently screened for inclusion by one author. Dataextraction and quality ratings were completed by three authors and inter-raterreliability was excellent.

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  Moreover, aninternet search through the Google and Yahoo search engine was used to identifyhead and neck cancer patient education materials available online.Results:A total of 361 studies were retrieved and after review, 24 studies wereidentified as relevant. HNC patients and caregiverswant understandable and accessible information about Head and Neck cancer, and particularlysurvivorship. Provision of resources that are appropriate is associated withimproved patient satisfaction with the healthcare professionals’ care. Conclusions:Providing the right amount and content of information may act to reduce levelsof emotional distress, anxiety and depression associated with HNC diagnosis andtreatment. Word count: 236words Condensed abstract: Providing appropriate and tailored education to HNCpatients before, during, and after treatment is a challenge. Providingthe right amount and content of information may act to reduce levels ofemotional distress, anxiety and depression associated with HNC diagnosis andtreatment. Key WordsHeadand neck cancer, patients, consumer health information, education, socialsupport                        IntroductionHeadand neck cancer (HNC) represents a diverse group of tumours linked by anatomicalproximity.

Combing all forms, including mucosal, cutaneous, thyroid, andsalivary cancers, HNC is one of the most common cancers in the world 1. Increasedoropharyngeal cancer rates have been observed during the last three decades 2. Theannual incidence of head and neck cancers worldwide is more than 550,000 with ahigh burden of morbidity and around 300,000 deaths each year 3, withmore men than women diagnosed with and dying from the disease. With advances indiagnosis and treatment, the number of patients living with this disease isincreasing.

Survival across HNC types are variable, with cancer of the larynxhaving the lowest five-year survival rate 4.Increasing survival makes educational material on late effects of cancer andits treatment, including psychosocial care, essential to support optimaloutcomes in survivors 5.Psychosocialcare of cancer patients consists of both education and supportive care.Supportive care extends beyond physical and symptom support and includes socialsupport, psychologic care, spiritual needs, and information 6.To date the literature regardingeducational needs of HNC patients and interventions to support these has notbeen systematically reviewed.  This studyaimed to determine: (1) evidence of what information is provided to head andneck 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 MethodsData sources and search strategyThis meta-synthesis was conducted following thePreferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA)guidelines 7.

A systematic search of Medline Ovid, PsychINFO, andCINAHL databases including period January 1946 to October 2015 was conducted inNovember 2015. Mesh terms used were “head and neck” AND “cancer” OR “neoplasm”AND “patient education”. Initial search results from thedatabases were merged and duplicates identified and removed (Figure 1). Qualityreview was measured using pre-specified criteria for qualitative andquantitative studies 8. Inter-rater reliability was undertaken to determineconsistency in quality review between reviewers. Dataextraction, quality review, and synthesisDatawere extracted by three reviewers (JJ, HD, HS) and discrepancies resolved by discussionto achieve consensus.

A formal meta-analysis was not undertaken due to thediverse outcomes and measures reported in the included studies. All includedstudies were assessed for quality using the criteria described in Kmet 8. Internet patient educationmaterials and selection of websitesIn June 2017, an internet search using thetwo most popular search engines (Google and Yahoo) was used to identify internetpatient education materials (IPEMs). The four search terms “head and neckcancer patient information” were used in the advanced search setting.

Weexamined the first 20 English language websites identified in the combinedkeyword query9.Websites were included if they: targeted the patient or caregiver populations;and, were authored by a healthcare professional or reviewed by a board ofmedical specialists.  Wordcount: 243 words                   Results:Thesearch strategy generated 361 titles; 30 duplicates were identified; a further 20articles were excluded because they were not peer-reviewed or written inEnglish.  We retrieved 311 articles for eligibilityreview, 24 were retained as relevant to HNC patient education and support needs(Figure I and Table I). Quality reviewOverallthe methodological quality of the quantitative studies was high with a meanquality rating of 0.73 (Table II). The qualitative studies had a mean rating of0.74 (range: 0.

25-0.95), notably the qualitative studies were older rangingfrom 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 needsInformationprovided at the time of diagnosis and treatment decision-making wasinvestigated in two studies 10,11.Newell et al. interviewed twenty-nine patients regarding their experience ofthe pre-operative consultation and information provision.

Usage of medical andtechnical terms adversely affected participant’s ability to understandinformation provided. The shock of diagnosis made processing informationdifficult. Depression several months after surgery was reported, as patientsrealised the reality of lifestyle changes being long-term and contributing totheir survival experience. Ina qualitative study Pollock et al.

found verbal information was valued overwritten 11. Thiswas related to participant’s preference to receive information that is specificand tailored to their circumstances. Participants described a preference fortailored information delivered in stages appropriate to their experience oftreatment. The written information was viewed as a ‘back up’ to informationdelivered verbally. This desire for written information was furtherdemonstrated in a study by Pollock et al.

which explored patients’ (n=12 HNCpatients and n=15 lung cancer patients) experience of receiving informationabout cancer using interviews and the Information Satisfaction Questionnaire(ISQ) 11. Most(85%) respondents were satisfied or very satisfied with the informationprovided. Threecross-sectional studies investigated unmet information needs of HNC patientsrevealing need for information about disease, treatment, access to help, andsolutions 12-14. Newlydiagnosed patients required higher information needs than patients currentlyundergoing treatment.14 Priorto consenting to a procedure patients wanted information about the procedurerisks and benefits and disease prognosis. Most patients (84%) wanted detailedinformation about treatment (63%), information about the disease (56%) followedby information about procedural risks (31%).13 Alternativeapproaches to meeting information needs have included the impact of advancedpractice nurses (APN) providing information to patients at home 15.

Nurses intervened in response to patient needs and documenting these needs inpatient records.  Topics on postoperativephysical care were heterogeneous amongst the cancers and included: wound care,skin care, postoperative activity restrictions and recommendations, diet topromote wound healing, action and side effects of prescribed medicationsincluding pain medications, prevention and management of narcotic-inducedconstipation, and adverse events and symptoms to report to the primary careprovider.  Informationneed on illness trajectory before surgery and post-operative expectations was emphasisedin a prospective study of 32 patients by Glavassevich et al. 16.  Most patients stated they were unprepared forsome post-operative side effects including neck stiffness, loss of sensation inthe neck area, scarring, and fistulas despite 75% recall by patients receiving informationabout postoperative course prior to surgery.

In most cases, fear and anxietywere 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%. InVan der Meulen et. al’s evaluation an educational intervention delivered by anurse on post-discharge information, patients demonstrated information needs concerning:disease, treatment, side-effects, physical fitness, daily functional impact, post-operativerecovery time, and impact on quality of life 17. WhenHNC patients had no education on oral health hygiene they reported low regularflossing (58%) and cleaning of dentures (50%) without education in these patients18.  Satisfaction withinformationTwostudies have studied information provision by measuring satisfaction through ade novo was Satisfaction with Cancer Information Profile (SCIP) questionnaire19,20. The prospectivesingle arm study with the same cohort, demonstrated low satisfaction beforetreatment was predictive of depression months (6-8) after treatment ended. Informationneeds that were unmet included: financial support advice, patient supportgroups, coping with treatment side-effects, ability to work, and how treatmentmay affect quality of life (QoL) and long-term performance20. Inanother prospective study, providing an education tool pre-operatively wasassociated with high satisfaction with information and helped reduce patient anxiety21.

 Afeasibility study investigating a psycho-educational intervention aimed atteaching 50 HNC patients how to cope with their cancer demonstrated significantimprovement 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).22Patients with lower education (p=0.02) and early stage disease (p=0.045) weremore likely to drop-out of the study. Interviews with 133 patients reported higherscores on the Patient Information Needs Questionnaire (PINQ) to be associated withhigher levels of anxiety, more depression, and more psychological complaints 12. Aprospective single arm study assessed the utility of an information booklet.

23 Mostof the patient/relative group reported the information was detailed (57%),beneficial (67%), and the terminology appropriate (83%) 23. Twoprospective studies investigated satisfaction with a video about radiationtherapy 24,25.  Education videoes provided novel informationto patients but failed to significantly increase knowledge 25.Patients in one study were satisfied with the information about the simulationprocedure, preparing for procedures, reactions to treatment, appointment times,and what happens after their treatment 24.  Usageof an electronic health information system for support was evaluated inthirty-six post-operative HNC patients26. Theusage of the support system was high with 33 (92%) of patients aware of havingreceived a reply from team support and 94% satisfied with the reply. “Appreciation”of the system was assessed with a mean score of 8/10.  Twostudies used differing educational interventions, one traditional informationdelivery system of tailored information to HNC and lung cancer patients atdifferent stages of their cancer journey; and the other a tailored online patienteducation project (PEPTalk) in breast cancer, diabetes and HNC patients 27,28.

Atack et al. had participants complete a Perceived Health Web Site UsabilityQuestionnaire which revealed a high satisfaction with the website (mean score87/100), ease of use (85/100), and improving knowledge about health (94/100) 27.Results of both the previous educational interventional studies were consistentin that most respondents valued personally tailored information for diagnosis,treatment, and recovery.

For most respondents, written information served asreference material, reinforcing verbal communication. There was significantconcern regarding the side effects of treatment. However, patients oftenpreferred to let professionals decide what they should be told and needed toknow, with some indicating a clear preference to not know about poor prognosis.    Information recallChanet al. conducted a randomised controlled trial investigating the effect of a pre-operativewritten information page on surgery, including diagrams, on recall of surgicalrisks. The recall of potential risks in the intervention group wassignificantly higher at 50% compared to 30% for the control group 29.  Another prospective pre-and post-testquantitative study evaluated the effect of an educational tool on oral hygiene performance.The study involved n=19 patients and demonstrated an improvement in self-carebehaviours and patients’ ability to request for pain medication 30.

 Head and neck cancer patienteducation websitesThefirst 20 websites for IPEM identified in our web search are summarised in tableIV. None have been cited in the literature which is peer reviewed and therehave been no reported assessments of their capacity to address unmetinformation needs of HNC patients.Wordcount: 1252 words Discussion: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.  Wordcount: 1,011 words ConclusionsEducationalmaterials for HNC patients need to be clear and accessible.

Patients desire informationthat is understandable, comprehensive and available in a multiplicity of formatsbut tailored to their individual condition. Delivery of high quality informationhas been associated with overall satisfaction with care.