Associations between markers of social functioning and depression and quality of life in survivors of head and neck cancer: Findings from the Head and Neck Cancer 5000 study.

OBJECTIVE: To investigate associations between markers of social functioning (trouble with social eating and social contact), depression and health-related quality of life (QOL) among head and neck cancer survivors. METHODS: This cross-sectional analysis included individuals with oral cavity, oropharynx, larynx, salivary gland and thyroid cancers from Head and Neck 5000 alive at 12 months. Trouble with social eating and social contact were measured using items from EORTC QLQ-H&N35 and QOL using EORTC QLQ-C30; responses were converted into a score of 0-100, with a higher score equalling more trouble or better QOL. A HADS subscale score of ≥8 was considered significant depression. Associations between tertiles of trouble with social eating and social contact and depression and QoL were assessed using multivariable logistic and linear regression (with robust errors), respectively. RESULTS: Of 2561 survivors, 23% reported significant depression. The median QOL score was 75.0 (interquartile range 58.3-83.3). For trouble with social eating, after confounder adjustment, those in the intermediate and highest tertiles had higher odds of depression (intermediate: OR = 4.5, 95% CI 3.19-6.45; high: OR = 21.8, 15.17-31.18) and lower QOL (intermediate:ß = -8.7, 95% CI -10.35 to -7.14; high: ß = -24.8, -26.91 to -22.77). Results were similar for trouble with social contact. CONCLUSION: We found strong clinically important associations between markers of social functioning and depression and QOL. More effective interventions addressing social eating and contact are required. These may help survivors regain their independence, reduce levels of isolation and loneliness, and depression, and improve QOL outcomes generally.

A qualitative exploration of attitudes to walking in the retirement life change.

BACKGROUND: Walking is a simple activity that could help to reduce the prevalence of chronic diseases in all populations. Furthermore, an inverse dose-response relationship exists between steps taken and risk of premature death and cardiovascular events in middle-aged and older adults. There is a lack of information on how to effectively engage older adults around retirement age in walking. This qualitative study explored attitudes towards walking in older people with regard to habits, intensity, preferences and strategies for increasing walking behaviour. METHODS: In-depth qualitative interviews were conducted with 26 older adults who were either close to retirement or recently retired. An inductive thematic analysis was conducted. RESULTS: Three themes were identified from the data; 1) Engagement and perceived value of walking; was focused on the meaning of walking for the participant and the attributes they associate with their walking practice. 2) Integration and connectivity of walking; was focused on how participants integrate walking in their daily lives and whether walking can be practiced as a viable means of connectivity. 3) Strategies to increase walking; was focused on what factors motivate participants in their walking practice and what strategies they perceived to be beneficial to increase walking distance and intensity at an individual level. DISCUSSION: The views of walking in people of retirement age were represented within 3 key themes. The factors contained in these themes that may influence future walking practice are discussed with regard to future strategies to promote walking in the retirement life change. CONCLUSION: It may be beneficial to promote qualitative aspects of walking practice and strive for regularity rather than intensity of walking to accrue the social, psychological and intellectual benefits reported by individuals in the retirement life change.

Survival advantage in patients with human papillomavirus-driven oropharyngeal cancer and variation by demographic characteristics and serologic response: Findings from Head and Neck 5000.

BACKGROUND: Patients with human papillomavirus (HPV)-driven oropharyngeal cancer (OPC) experience better survival than those with HPV-negative OPC. It is unclear whether this benefit varies by demographic characteristics and serologic response. METHODS: Records from 1411 patients with OPC who had HPV serology data were analyzed. HPV status was based on HPV type 16 (HPV16) E6 serology. Participants were followed for a median of 5.9 years, and Cox proportional hazards models were used to estimate hazard ratios (HRs). The association between HPV status and overall survival was analyzed by age group, sex, smoking status, tumor site, HPV antibody levels, and HPV antibody pattern. Models were adjusted for age, sex, smoking status, and comorbidity. RESULTS: For the overall association between HPV status and survival, the fully adjusted HR was 0.43 (95% CI, 0.33-0.56). The HR was 0.19 (95% CI, 0.10-0.35) for participants aged ≤54 years, 0.38 (95% CI, 0.25-0.56) for those aged 55 to 64 years, and 0.73 (95% CI, 0.47-1.13) for those aged ≥65 years (P for interaction = .023). There was no clear evidence for an interaction by sex, smoking status, or tumor site. Survival did not differ according to E6 antibody levels in those who were seropositive. All seropositivity patterns were associated with increased survival compared with a pattern of seronegativity for all antibodies. Patients who are positive for E1, E2, E6, and E7 may experience better survival. CONCLUSIONS: HPV status confers a survival advantage across all groups. This survival advantage is more marked for younger patients. The HPV antibody pattern, but not the antibody level, may also affect survival.

Disease trajectories, place and mode of death in people with head and neck cancer: Findings from the 'Head and Neck 5000' population-based prospective clinical cohort study.

BACKGROUND: Few large studies describe initial disease trajectories and subsequent mortality in people with head and neck cancer. This is a necessary first step to identify the need for palliative care and associated services. AIM: To analyse data from the Head and Neck 5000 study to present mortality, place and mode of death within 12 months of diagnosis. DESIGN: Prospective cohort study. PARTICIPANTS: In total, 5402 people with a new diagnosis of head and neck cancer were recruited from 76 cancer centres in the United Kingdom between April 2011 and December 2014. RESULTS: Initially, 161/5402 (3%) and 5241/5402 (97%) of participants were treated with 'non-curative' and 'curative' intent, respectively. Within 12 months, 109/161 (68%) in the 'non-curative' group died compared with 482/5241 (9%) in the 'curative' group. Catastrophic bleed was the terminal event for 10.4% and 9.8% of people in 'non-curative' and 'curative' groups, respectively; terminal airway obstruction was recorded for 7.5% and 6.3% of people in the same corresponding groups. Similar proportions of people in both groups died in a hospice (22.9% 'non-curative'; 23.5% 'curative') and 45.7% of the 'curative' group died in hospital. CONCLUSION: In addition to those with incurable head and neck cancer, there is a small but significant 'curative' subgroup of people who may have palliative needs shortly following diagnosis. Given the high mortality, risk of acute catastrophic event and frequent hospital death, clarifying the level and timing of palliative care services engagement would help provide assurance as to whether palliative care needs are being met.

Range and timing of surgery, and surgical sequences used, in primary repair of complete unilateral cleft lip and palate: The Cleft Care UK study.

OBJECTS: To describe the range of surgery used to repair the lip and palate in the UK with specific interest in the sequence/timing used in complete unilateral cleft lip and palate (cUCLP). SETTING AND SAMPLE POPULATION: The Cleft Care UK study, a cross-sectional study of 268 5-year-olds, born from 2005 to 2007, with complete unilateral cleft lip and palate. MATERIALS & METHODS: Information on surgery was extracted from medical notes by surgeons during research clinics and transcribed onto a standardized questionnaire. RESULTS: Surgical data were available for 251 (94%) children from all cleft centres in the UK (n = 18). Over a two-year period, 32 surgeons used 10 different surgical sequences in primary repair of the cleft lip and palate. The most frequently used sequence was repair of cleft lip and anterior hard palate followed by repair of posterior hard palate and soft palate (70%). Four surgical sequences were used only once. Most surgeons had a preferred sequence, but 38% (11/29) used more than one sequence during the study period. The timing of repair of the lip, the hard palate and the soft palate varied with surgical sequence, and also between surgeons, even adjusting for the different sequences used. CONCLUSION: Despite centralization of cleft services in the UK, there remains considerable variation in both the sequence and timing of surgical repair of cleft lip and palate in infancy. Further work is required to understand whether these factors are associated with differences in outcome.

The behavioural and social sciences as hidden curriculum in UK dental education: A qualitative study.

INTRODUCTION: The behavioural and social sciences (BeSS) are an integral part of dental curricula, helping students become holistic, patient-centred practitioners. Nevertheless, UK studies document that dental undergraduates struggle to see the relevance of BeSS to their training. Using the concept of hidden curriculum, this study explored dental students’ perceptions of and attitudes towards BeSS in one dental school in the UK. MATERIAL AND METHODS: Six focus groups were conducted with 37 dental students from years 1 to 5. Thematic analysis was conducted revealing five themes: student attitudes towards BeSS, teaching culture, learning culture, curricular issues and student culture. RESULTS: Many students recognised how BeSS contributed to their communication and patient management skills. Nevertheless, the study revealed a dental student cohort who have a strained relationship with BeSS. This negative attitude became more apparent from year 3 onwards, when the clinical phase of studies begins. It was perpetuated and legitimated by the existence of a strong student culture that openly critiqued BeSS among and between student year groups. DISCUSSION AND CONCLUSION(S): In UK dental education there is a hidden curriculum related to BeSS. By underestimating the utility of BeSS, students are failing to recognise the biopsychosocial dimensions relevant to oral health and dental practice. All UK dental schools should review their relationship with BeSS and assess whether they are perpetuating a hidden curriculum about BeSS within their curricula.

Tobacco smoking and alcohol drinking at diagnosis of head and neck cancer and all-cause mortality: Results from head and neck 5000, a prospective observational cohort of people with head and neck cancer.

Tobacco smoking and alcohol consumption are well-established risk factors for head and neck cancer. The prognostic role of smoking and alcohol intake at diagnosis have been less well studied. We analysed 1,393 people prospectively enrolled into the Head and Neck 5000 study (oral cavity cancer, n=403; oropharyngeal cancer, n=660; laryngeal cancer, n=330) and followed up for a median of 3.5 years. The primary outcome was all-cause mortality. We used Cox proportional hazard models to derive minimally adjusted (age and gender) and fully adjusted (age, gender, ethnicity, stage, comorbidity, body mass index, HPV status, treatment, education, deprivation index, income, marital status, and either smoking or alcohol use) mortality hazard ratios (HR) for the effects of smoking status and alcohol intake at diagnosis. Models were stratified by cancer site, stage and HPV status. The fully-adjusted HR for current versus never-smokers was 1.7 overall (95% confidence interval [CI] 1.1, 2.6). In stratified analyses, associations of smoking with mortality were observed for oropharyngeal and laryngeal cancers (fully adjusted HRs for current smokers: 1.8 (95% CI=0.9, 3.40 and 2.3 (95% CI=0.8, 6.4)). We found no evidence that people who drank hazardous to harmful amounts of alcohol at diagnosis had a higher mortality risk compared to non-drinkers (HR=1.2 (95% CI=0.9, 1.6)). There was no strong evidence that HPV status or tumour stage modified the association of smoking with survival. Smoking status at the time of a head and neck cancer diagnosis influenced all-cause mortality in models adjusted for important prognostic factors.

Depressive symptoms in relation to overall survival in people with head and neck cancer: A longitudinal cohort study.

OBJECTIVE: The objective of the study is to investigate the relation between pretreatment depressive symptoms (DS) and the course of DS during the first year after cancer diagnosis, and overall survival among people with head and neck cancer (HNC). METHODS: Data from the Head and Neck 5000 prospective clinical cohort study were used. Depressive symptoms were measured using the Hospital Anxiety and Depression Scale (HADS) pretreatment, at 4 and 12-month follow-up. Also, socio-demographic, clinical, lifestyle, and mortality data were collected. The association between before start of treatment DS (HADS-depression > 7) and course (never DS, recovered from DS, or persistent/recurrent/late DS at 12-month follow-up) and survival was investigated using Cox regression. Unadjusted and adjusted analyses were performed. RESULTS: In total, 384 of the 2144 persons (18%) reported pretreatment DS. Regarding DS course, 63% never had DS, 16% recovered, and 20% had persistent/recurrent/late DS. People with pretreatment DS had a higher risk of earlier death than people without DS (hazard ratio (HR) = 1.65; 95% confidence interval (CI) 1.33-2.05), but this decreased after correcting for socio-demographic, clinical, and lifestyle-related factors (HR = 1.21; 95% CI 0.97-1.52). Regarding the course of DS, people with persistent/recurrent/late DS had a higher risk of earlier death (HR = 2.04; 95% CI 1.36-3.05), while people who recovered had a comparable risk (HR = 1.12; 95% CI 0.66-1.90) as the reference group who never experienced DS. After correcting for socio-demographic and clinical factors, people with persistent/recurrent/late DS still had a higher risk of earlier death (HR = 1.66; 95% CI 1.09-2.53). CONCLUSIONS: Pretreatment DS and persistent/recurrent/late DS were associated with worse survival among people with HNC.

The incompatibility of healthcare services and end-of-life needs in advanced liver disease: A qualitative interview study of patients and bereaved carers.

BACKGROUND: Liver disease represents the third commonest cause of death in adults of working age and is associated with an extensive illness burden towards the end of life. Despite this, patients rarely receive palliative care and are unlikely to be involved in advance care planning discussions. Evidence addressing how existing services meet end-of-life needs, and exploring attitudes of patients and carers towards palliative care, is lacking. AIM: To explore the needs of patients and carers with liver disease towards the end of life, evaluate how existing services meet need, and examine patient and carer attitudes towards palliative care. DESIGN: Qualitative study - semi-structured interviews analysed using thematic analysis. Settings/participants: A total of 17 participants (12 patients, 5 bereaved carers) recruited from University Hospitals Bristol. RESULTS: Participants described escalating physical, psychological and social needs as liver disease progressed, including disabling symptoms, emotional distress and uncertainty, addiction, financial hardship and social isolation. End-of-life needs were incompatible with the healthcare services available to address them; these were heavily centred in secondary care, focussed on disease modification at the expense of symptom control and provided limited support after curative options were exhausted. Attitudes towards palliative care were mixed, however, participants valued opportunities to express future care preferences (particularly relating to avoidance of hospital admission towards the end of life) and an increased focus on symptomatic and logistical aspects of care. CONCLUSION: The needs of patients with liver disease and their carers are frequently incompatible with the healthcare services available to them towards the end of life. Novel strategies, which recognise the life-limiting nature of liver disease explicitly and improve coordination with community services, are required if end-of-life care is to improve.

Closing the Loop on Centralization of Cleft Care in the United Kingdom.

OBJECTIVE: We highlight a major study that investigated the impact of reconfigured cleft care in the United Kingdom some 15 years after centralization. We argue that centralization as an intervention has a major impact on outcomes. SETTING: Audit clinics held in Cleft Centers in the United Kingdom. PATIENTS, PARTICIPANTS: Five-year-olds born between April 1, 2005, and March 31, 2007, with nonsyndromic unilateral cleft lip and palate. INTERVENTIONS: Centralization of cleft care. MAIN OUTCOME MEASURE(S): We collected routine clinical measures (speech recordings, hearing, photographs, models, oral health, psychosocial factors) in a very similar way to a previous survey. RESULTS: We identified 359 eligible children and recruited 268 (74.7%) to the study. Overall, their outcomes were better post-centralization. There have been marked improvements in dentoalveolar arch relationships and in speech whereas the prevalence of dental caries and hearing loss are unchanged. CONCLUSIONS: Centralized cleft care has changed UK outcomes considerably and there is no argument for returning to a dispersed model of treatment.

Social factors associated with readiness for sexual activity in adolescents: a population-based cohort study.

Various factors are associated with sexual activity in adolescence and it is important to identify those that promote healthy and adaptive romantic and sexual development. The objectives of this study were to describe rates of early sexual intercourse (before 16 years) and sexual readiness in adolescence and to assess the extent to which these were social patterned. We prospectively studied nearly 5,000 15-year-olds from the Avon Longitudinal Study of Parents and Children, a UK birth cohort. Between 2006 and 2008, female and male participants answered a computer assisted interview about romantic and sexual behaviors in the last year. Predictors of sexual intercourse and readiness for sexual intercourse were examined across a range of sociodemographic measures. Overall, 17.7% (95% CI 16.7%, 18.9%) of participants reported having had sexual intercourse in the last year, with more girls than boys reporting sexual experience (risk ratio 1.30, 95% CI 1.15, 1.47). Of these, one-third of both male and female were classed as unready because they were unwilling, lacking in autonomy, felt regret or had not used contraception. There was strong evidence of social patterning for sexual activity with higher rates for young people from poorer homes, with lower social class, and with younger, less educated mothers. In contrast, among 860 young people who had had sexual intercourse, there was no clear evidence of associations between social factors and sexual readiness. The lack of social patterning in sexual readiness supports the provision of comprehensive education to develop life skills for adolescents across all social groups.

The Effectiveness of Psychosocial Intervention for Individuals With Cleft Lip and/or Palate.

OBJECTIVE: The aim of this review was to assess the effectiveness of different psychological interventions for children and adults with cleft lip and/or palate and their parents. DESIGN: We searched six databases including MEDLINE and EMBASE to June 2013 and checked bibliographies. We included research that evaluated any psychological intervention in studies in which at least 90% of the participants had cleft lip and/or palate or were parents of those with cleft lip and/or palate. Studies containing less than 90% were excluded unless they reported results separately for those with cleft lip and/or palate, or raw data were available upon request from the authors. Inclusion assessment, data extraction, and risk of bias assessment were carried out independently by two reviewers. RESULTS: Seven studies were identified as inclusions, with only two studies being included in the full data analysis (one of which failed to meet the full inclusion criteria). The five remaining studies were included only in a narrative synthesis because data were available for people or parents of those with cleft lip and/or palate only. This highlights a distinct dearth of research into psychological intervention within the field of cleft lip and/or palate. CONCLUSIONS: The review found no evidence to support any specific intervention. Key uncertainties need to be identified and addressed. Adequately powered, methodologically rigorous randomized controlled trials are needed to provide a secure evidence base for psychological intervention techniques in participants with cleft lip and/or palate and their parents.

Perceptions of team members working in cleft services in the United kingdom: a pilot study.

BACKGROUND: Cleft care provision in the United Kingdom has been centralized over the past 15 years to improve outcomes for children born with cleft lip and palate. However, to date, there have been no investigations to examine how well these multidisciplinary teams are performing. METHODS: In this pilot study, a cross-sectional questionnaire surveyed members of all health care specialties working to provide cleft care in 11 services across the United Kingdom. Team members were asked to complete the Team Work Assessment (TWA) to investigate perceptions of team working in cleft services. The TWA comprises 55 items measuring seven constructs: team foundation, function, performance and skills, team climate and atmosphere, team leadership, and team identity; individual constructs were also aggregated to provide an overall TWA score. Items were measured using five-point Likert-type scales and were converted into percentage agreement for analysis. RESULTS: Responses were received from members of every cleft team. Ninety-nine of 138 cleft team questionnaires (71.7%) were returned and analyzed. The median (interquartile range) percentage of maximum possible score across teams was 75.5% (70.8, 88.2) for the sum of all items. Team performance and team identity were viewed most positively, with 82.0% (75.0, 88.2) and 88.4% (82.2, 91.4), respectively. Team foundation and leadership were viewed least positively with 79.0% (72.6, 84.6) and 76.6% (70.6, 85.4), respectively. CONCLUSIONS: Cleft team members perceive that their teams work well, but there are variations in response according to construct.

Clinical directors' views of centralisation and commissioning of cleft services in the U.K.

BACKGROUND: To determine the views of Clinical Directors working in the United Kingdom (U.K.) Cleft Service with regard to centralisation, commissioning and impact on cleft service provision. METHODS: In-depth qualitative interviews were conducted with 11 Clinical Directors representing regional cleft services. Interviews were transcribed verbatim, a coding frame was developed by two researchers and transcripts were coded using a thematic, 'interpretive' approach. RESULTS: Clinical Directors perceived the commissioning of cleft services in the U.K. to be dependent upon historical agreements and individual negotiation despite service centralisation. Furthermore, Clinical Directors perceived unfairness in the commissioning and funding of cleft services and reported inconsistencies in funding models and service costs that have implications for delivering an equitable cleft service with an effective Multidisciplinary Team. CONCLUSIONS: National Health Service (NHS) commissioning bodies can learn lessons from the centralisation of cleft care. Clinical Directors' accounts of their relationships with specialist commissioning bodies and their perspectives of funding cleft services may serve to increase parity and improve the commissioning of cleft services in the U.K.

Establishing a large prospective clinical cohort in people with head and neck cancer as a biomedical resource: head and neck 5000.

BACKGROUND: Head and neck cancer is an important cause of ill health. Survival appears to be improving but the reasons for this are unclear. They could include evolving aetiology, modifications in care, improvements in treatment or changes in lifestyle behaviour. Observational studies are required to explore survival trends and identify outcome predictors. METHODS: We are identifying people with a new diagnosis of head and neck cancer. We obtain consent that includes agreement to collect longitudinal data, store samples and record linkage. Prior to treatment we give participants three questionnaires on health and lifestyle, quality of life and sexual history. We collect blood and saliva samples, complete a clinical data capture form and request a formalin fixed tissue sample. At four and twelve months we complete further data capture forms and send participants further quality of life questionnaires. DISCUSSION: This large clinical cohort of people with head and neck cancer brings together clinical data, patient-reported outcomes and biological samples in a single co-ordinated resource for translational and prognostic research.

Centralization of services for children born with orofacial clefts in the United kingdom: a cross-sectional survey.

Objective : To examine current provision of cleft lip and/or palate services in the U.K. and compliance with recommendations made by the Clinical Standards Advisory Group (CSAG) in 1998. Design : Cross-sectional questionnaire survey. Setting : All 11 services within the U.K. providing care for children born with a cleft lip and palate. Participants : Members from each healthcare specialty in each U.K. cleft team. Interventions : Self-administered postal questionnaires enquired about the provision of cleft services. Data were collected about the overall cleft service, team coordination, hearing, orthodontics, pediatric dentistry, primary cleft surgery, psychology, restorative dentistry, secondary surgery, specialist cleft nursing, and speech and language therapy. Results : Questionnaires were returned from members of 130/150 cleft teams (87%) and these showed that U.K. cleft services have been restructured to 11 centralized services with 17 primary operative sites and 61 peripheral sites. All services provide care through a multidisciplinary (MDT) model, but the composition of each team varies. Primary cleft surgery and orthodontics were the only specialties that were represented in all cleft teams. Specialties may be represented in a team but their attendance at MDT clinics is variable. Only one team met all of the CSAG recommendations. Conclusions : Our survey shows that cleft services have centralized over the last 10 years, and an MDT model of care has been adopted. Further research is needed to show how this has influenced outcomes and to see whether some models of centralized care are associated with better outcomes.

Which behavioral, emotional and school problems in middle-childhood predict early sexual behavior?

Mental health and school adjustment problems are thought to distinguish early sexual behavior from normative timing (16-18 years), but little is known about how early sexual behavior originates from these problems in middle-childhood. Existing studies do not allow for co-occurring problems, differences in onset and persistence, and there is no information on middle-childhood school adjustment in relationship to early sexual activity. This study examined associations between several middle-childhood problems and early sexual behavior, using a subsample (N = 4,739, 53 % female, 98 % white, mean age 15 years 6 months) from a birth cohort study, the Avon Longitudinal Study of Parents and Children. Adolescents provided information at age 15 on early sexual behavior (oral sex and/or intercourse) and sexual risk-taking, and at age 13 on prior risk involvement (sexual behavior, antisocial behavior and substance use). Information on hyperactivity/inattention, conduct problems, depressive symptoms, peer relationship problems, school dislike and school performance was collected in middle-childhood at Time 1 (6-8 years) and Time 2 (10-11 years). In agreement with previous research, conduct problems predicted early sexual behavior, although this was found only for persistent early problems. In addition, Time 2 school dislike predicted early sexual behavior, while peer relationship problems were protective. Persistent early school dislike further characterized higher-risk groups (early sexual behavior preceded by age 13 risk, or accompanied by higher sexual risk-taking). The study establishes middle-childhood school dislike as a novel risk factor for early sexual behavior and higher-risk groups, and the importance of persistent conduct problems. Implications for the identification of children at risk and targeted intervention are discussed, as well as suggestions for further research.

Approaching parents to take part in a cleft gene bank: a qualitative pilot study.

OBJECTIVE: A gene bank, comprising genetic material and environmental and family history data, is being established in the United Kingdom to improve the understanding of the etiology of orofacial clefting (OFC). This study aimed to identify factors that might contribute to participation in a cleft gene bank and what issues need to be considered in approaching parents to be included. DESIGN: A qualitative approach was adopted, using focus groups and interviews. Transcripts of audio recordings were analyzed using inductive thematic analysis. PARTICIPANTS: A UK cleft center invited 100 families of children born with OFC to participate. Inclusion criteria included any parent of a child aged between 6 months and 16 years willing to take part. Sixteen parents participated. RESULTS: Participants were generally motivated to take part in a cleft gene bank because they value the discovery of new knowledge of the etiology of OFC. They wanted reassurance about the purpose and integrity of the project. Many conveyed shock at the diagnosis of cleft and offered mixed accounts of experiences with health care professionals. They suggested an individualized approach from a trustworthy and sensitive professional when being invited to join the gene bank, avoiding difficult times associated with new-baby challenges and issues related to the cleft. CONCLUSIONS: This pilot study indicates that parents of children born with OFC would be supportive of developing a cleft gene bank, but sensitive issues need to be considered.

Factors affecting willingness to pay for NHS-based orthodontic treatment.

Objective To assess factors affecting willingness to pay for orthodontic treatment.Methods An online discrete choice experiment and willingness to pay study was conducted on a convenience sample of 250 participants aged 16 and above over a four-month period. Participants completed a series of stated-preference tasks, in which they viewed choice sets with two orthodontic treatment options involving different combinations of attributes: family income; cost to patient; cause of problem; prevention of future problems; age; severity of the problem; and self-esteem/confidence.Results Family income, cost to patient, cause of the problem, age and self-esteem/confidence were the most important attributes influencing participants' decisions to have orthodontic treatment. Participants felt that free NHS-based orthodontic provision should be prioritised for those under 18, regardless of family income, for those with developmental anomalies, particularly where self-esteem and confidence are affected, with younger participants (aged 16-24 years) strongly preferring full NHS funding for those under 18 years old (p = 0.007, 95% CI: 0.57-0.09) who dislike smiling in public, especially where self-esteem and confidence are impaired (p = 0.002, 95% CI: 0.16-0.71). Participants with high annual income had the highest preference for the NHS to fund treatment regardless of income (p = 0.02, 95% CI: 0.13-1.47) and placed an onus on addressing developmental anomalies (p = 0.004, 95% CI: 0.22-1.15). In total, 159 (63.6%) of those who would undergo treatment were willing to pay for it, with the majority (88%) open to paying up to £2,000 and only three participants stating the NHS should not contribute towards the cost of orthodontic treatment.Conclusions Based on this pilot study, key factors influencing the decision to undergo treatment included family income, cost, the aetiology of malocclusion, age and self-esteem/confidence. It was felt that free NHS-based treatment should be given priority where self-esteem and confidence are impaired among young people. Further research to inform the priorities underpinning the provision of dental care and orthodontic treatment within the NHS is required.

Prioritising NHS dental treatments: a mixed-methods study.

Objectives To determine the priorities of patients and dental professionals concerning NHS dental treatments, the factors influencing prioritisation and the willingness to contribute towards the cost of NHS dental treatments.Methods Focus groups and interviews involving patients and practitioners informed the development of a piloted questionnaire concerning the priorities for NHS dental treatments. Patients attending three purposively selected dental settings in London and Kent, as well as dental professionals working within a large London dental hospital were recruited to participate in this initial qualitative phase. Qualitative interviews were audiotaped, transcribed verbatim and analysed using the framework approach. Subsequently, another sample of patients and dental professionals within the three dental settings and dental hospital completed a questionnaire. Regression models were used to determine the predictors of perceived priorities and willingness to contribute to NHS dental costs based on the questionnaire data.Results Three focus groups (n = 9) and one semi-structured interview with patients and one focus group of dental professionals (four general dental practitioners and two dental nurses) were conducted. Participants prioritised NHS dental treatments that improve quality of life and social wellbeing. Factors influencing the prioritisation of NHS dental treatments included: individual responsibility for oral health care; concerns about self-esteem and confidence; age-related issues; and the role of treatment in prevention of future dental and general health problems, with financial concerns underpinning these themes. Out of the 455 questionnaires completed, 414 (383 patients and 31 general dental practitioners) were included in the analysis. The provision of emergency dental treatment for children was afforded the highest priority among both patients (59%) and dentists (74.2%). Both groups of participants felt that full funding for most NHS dental treatments should be prioritised for children (<18 years old) rather than adults (p <0.05).Conclusion Participants prioritised NHS dental treatments that would improve social wellbeing and quality of life, with an emphasis on full coverage for NHS treatment for children and young people. Policy makers should account for these preferences in the planning of NHS dental services.