A discrete choice experiment to assess people living with HIV's (PLWHIV's) preferences for GP or HIV clinic appointments.

OBJECTIVES: To understand which aspects of general practitioner (GP) and HIV clinic appointments people living with HIV (PLWHIV) most value when seeking advice for new health problems. METHODS: A discrete choice experiment using a convenience sample of people diagnosed with HIV. Participants were recruited from 14 general HIV clinics in the South East of England between December 2014 and April 2015. ORs were calculated using conditional logit (CLOGIT) and latent class models (LCMs). RESULTS: A total of 1106 questionnaires were returned. Most participants were male (85%), white (74%) and were men who have sex with men (69%). The CLOGIT analysis showed people particularly valued shorter appointment waiting times (ORs between 1.52 and 3.62, p<0.001 in all instances). The LCM analysis showed there were two distinct classes, with 59% and 41% of respondents likely to be in each. The first class generally preferred GP to HIV clinic appointments and particularly valued 'being seen quickly'. For example, they had strong preferences for shorter appointment waiting times and longer GP opening hours. People in the second class also valued shorter waiting times, but they had a strong general preference for HIV clinic rather than GP appointments. CONCLUSIONS: PLWHIV value many aspects of care for new health problems, particularly short appointment waiting times. However, they appear split in their general willingness to engage with GPs.

A cross-sectional comparison study of cognitive and emotional well-being in oral cancer patients.

The main aim of this study was to establish whether oral cancer patients were at risk of long-term problems with adaptation, whilst investigating contributory factors using a framework of Subjective Well-Being. Three samples of patients treated for either oral cancer (n=115); throat cancer (n=47), or benign conditions of the salivary gland (n=33) were recruited into a cross-sectional, postal questionnaire study. A gender and age matched healthy normative sample (n=115) was recruited for comparison purposes. Measures included The Satisfaction with Life Scale, the General Health Survey (SF-12), Life Orientation Test and the Hospital Anxiety and Depression Scale. Patients with oral cancer demonstrated similar levels of cognitive and emotional well-being as the other samples. Time since treatment and the majority of clinical and treatment related factors had no effect on cognitive and emotional adaptation in any of the patient samples.

Positive consequences of head and neck cancer: key correlates of finding benefit.

The identification of positive outcomes from adversity has been commonly termed benefit finding. This cross-sectional questionnaire study aimed to identify the extent to which benefit finding occurs among head and neck cancer (HNC) patients and what factors are associated. HNC patients treated 6 months to 10 years previously (n = 76), completed the following measures: the LOT-R, HADS, the Brief COPE, and a measure of benefit finding. Moderate to high levels of benefit finding were reported. Optimism and positive reappraisal were positively associated with benefit finding, with optimism acting independently of positive reappraisal coping. These findings have implications for the development of interventions to maximize positive psychological outcomes after treatment.

The relationship between the Patient Generated Index (PGI) and measures of HR-QoL following diagnosis with head and neck cancer: are illness and treatment perceptions determinants of judgment-based outcomes?

OBJECTIVES: The primary objectives of this study were to examine the relationship between factors specified in the extended Self-Regulation Model (SRM) (illness and treatment perceptions and coping strategy) and three types of QoL outcome. Secondary objectives were to examine the relationships between outcome measures (general and cancer-specific HR-QoL and the Patient Generated Index (PGI)). DESIGN: Cross-sectional questionnaire study. METHODS: Eighty-two newly diagnosed patients with head and neck cancer (HNC) completed the Illness Perception Questionnaire--Revised (IPQ-R), the Beliefs about Medicines Questionnaire (BMQ), the Hospital Anxiety and Depression Scale (HADS), the Brief COPE and the Life Orientation Test (LOT-R). Patient outcomes were assessed using the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30, MOS Short Form Health Survey (SF-12v2) and the Patient Generated Index (PGI). RESULTS: These pre-treatment cross-sectional results have shown that key components of the SRM (beliefs and coping) were explanatory factors of HR-QoL outcomes. The PGI was not associated with any of the components of the SRM. The PGI was partially correlated with HR-QoL measures; in particular, Global QoL/health status (EORTC) and Mental Component Summary scores (SF-12). CONCLUSIONS: Our findings suggest that the illness perceptions approach may be a useful method for eliciting and understanding patients' beliefs regarding HNC. In order to maximize outcomes, simple interventions could address particular patient beliefs and coping styles.

How satisfied are head and neck cancer (HNC) patients with the information they receive pre-treatment? Results from the satisfaction with cancer information profile (SCIP).

Recent UK government recommendations state that high quality information must be provided for cancer patients. The objectives of this study were firstly, to explore how satisfied head and neck cancer (HNC) patients were with information provided about their illness and treatment, in order to identify areas of improvement. Secondly, to assess the extent to which satisfaction with information before treatment was predictive of long-term outcomes. Patients completed the satisfaction with information profile (SCIP), the Hospital Anxiety and Depression Scale (HADS) and the SF-12 Health Survey (SF-12v2) before treatment (n=82), 1 month after the end of treatment (n=68) and 6-8 months later (n=50). Patients were generally satisfied with information, however key areas of improvement were identified, such as the provision of information about support groups, where to go for financial advice and the long-term affects of treatment on ability to work, physical functioning and QoL. Satisfaction with information before treatment was predictive of depression and Mental Component Summary scores (HR-QoL) 6-8 months after the end of treatment. This study highlights the need for tailored information provision and the impact on longitudinal outcomes of satisfying patient's needs for information prior to treatment.

Head and neck cancer: to what extent can psychological factors explain differences between health-related quality of life and individual quality of life?

AIMS: To assess the extent to which individualised quality of life (QoL) was related to standardised health-related quality of life (HR-QoL), and to assess how much of the variation in each of these measures could be explained by psychological variables. METHODS: Fifty-five patients with newly diagnosed head and neck cancer completed the following outcome measures: the Patient Generated Index (PGI), the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 and the Short Form 12 version 2 (SF-12v2). Explanatory factors were measured with the following: the Illness Perceptions Questionnaire-Revised (IPQ-R), the Beliefs about Medicines Questionnaire (BMQ), the Hospital Anxiety and Depression Scale (HADS), and the Brief COPE (a shortened version of the COPE). MAIN FINDINGS: Standardised and individualised QoL measures were correlated only partly. The PGI correlated only with EORTC QLQ-C30 domains of emotional and cognitive functioning and SF-12 domains of mental health, emotional role, social, and physical role. The underlying psychological factors explaining each of the three outcome measures were different. CONCLUSIONS: Respondent-generated measures such as the PGI could be used as an adjunct to more standardised measures of HR-QoL clinically. This has implications for assessing the impact of head and neck cancer on individualised QoL and also for improving patients' outcome through interventions aimed at targeting underlying psychological factors.

Are psycho-social and behavioural factors related to health related-quality of life in patients with head and neck cancer? A systematic review.

The survival rate in advanced cancer of the head and neck has remained at approximately 50%, and efforts are now directed towards reducing the impact of the disease and its treatment in terms of functioning and health related-quality of life (HR-QoL). Factors such as stage, site of disease and type of treatment all impact on HR-QoL, but it is unclear what additional factors influence HR-QoL. A systematic review was undertaken of studies that have investigated psycho-social or behavioural factors associated with HR-QoL in this patient group. Literature was systematically searched using electronic databases and hand-searching relevant journals. Data were sought on HR-QoL and studies were only included if the measurement instrument was recognised as a reliable and valid measure of HR-QoL. Studies had to include at least one psycho-social or behavioural predictor variable. Sixteen studies fulfilling the inclusion criteria were identified and reviewed. Five main factors were associated with varying degrees with HR-QoL, personality, social support, satisfaction with consultation and information, behavioural factors, such as consuming alcohol and smoking, and depressive symptoms. The major difficulty with synthesising the findings was the amount of different indices of QoL that have been used. However, a number of psycho-social factors have been investigated in relation to HR-QoL in head and neck cancer patients, some of which are potentially modifiable, such as those related to informational needs. Further research is needed to investigate other psychological factors which may influence aspects of HR-QoL. By understanding the relationship between HR-QoL and potentially modifiable variables, interventions can be designed with the aim of improving a patient's long-term well-being.

Risk factors for squamous cell carcinoma of the oral cavity in young people--a comprehensive literature review.

There have been several reports of a rising incidence of oral cancer from many parts of the world. Although it is well known that oral cancer increases with age, recent trends for a rising incidence particularly relates to cancer of the tongue and mouth in young males. This review critically examines 46 publications devoted to oral cancer in the young adult. Most studies suggest that 4-6% of oral cancers now occur at ages younger than 40 years. Several studies examining risk factors for oral cancer in the young provide evidence that many younger patients have never smoked or consumed alcohol, which are recognised risk factors in older groups, or that duration of exposure may be too short for malignant transformation to occur. Information on many aspects of aetiology for this disease in the young implicating occupational, familial risk, immune deficits and virus infection are meagre. The spectrum of genetic abnormality disclosed is similar to older patients, there is paucity of specific studies involving younger cohorts, but predisposition to genetic instability has been hypothesised as a likely cause. Conflicting evidence is also reported on the sex distribution and outcome compared with older patients. Much work is required to understand the caveats related to global demography, risk factors and their diagnostic and prognostic markers for this disease which might be considered a disease distinct from that occurring in older patients.

Squamous cell carcinoma of the oral cavity in patients aged 45 years and under: a descriptive analysis of 116 cases diagnosed in the South East of England from 1990 to 1997.

BACKGROUND: there is, currently, much anecdotal and some epidemiological evidence for a rise in oral cancer rates amongst younger individuals, many of whom have had no exposure to traditional risk factors such as tobacco and heavy alcohol use, or at least not the exposure over decades usually associated with this disease. The probity of this assertion and the presence or absence of traditional risk factors needs further evidence. OBJECTIVES: this paper describes the demography and the exposure to potential risk factors amongst a cohort aged 45 years and younger, diagnosed with squamous cell carcinoma of the oral cavity between 1990 and 1997 from the South East of England. MATERIALS AND METHODS: eligible patients registered with a cancer registry were included in this retrospective study. Information was accessed from the database and by a postal questionnaire survey. The self-completed questionnaire contained items about exposure to the following risk factors: tobacco; alcohol; diet; frequency of dental visits and familial cancer. RESULTS AND CONCLUSIONS: this is the largest UK epidemiological study so far to be undertaken on young subjects diagnosed with oral cancer. One-hundred and sixteen cases were recruited representing a response rate of 59%. Slightly over 90% of this cohort were classified as white European. A large proportion of cases (40%) were from social classes I & II suggesting either a true social class difference in young cases versus older oral cancer cases or a possible bias in responders or survivors. Risk factors of tobacco use and excessive alcohol consumption were present in the majority (75%) of patients. Significant differences in the pattern of alcohol consumption were found in female subjects, who were less likely to consume over the recommended amounts of alcohol compared with male subjects. Daily regular fresh fruit and vegetable consumption during the ten year period before cancer diagnosis was recorded to be low. There was a distinct subgroup of cases, 26% of the group, that showed little, if any, exposure to any major risk factors.

Risk factors for oral cancer in newly diagnosed patients aged 45 years and younger: a case-control study in Southern England.

BACKGROUND: This case-control study aimed to identify the risk factors for oral cancer in patients aged 45 years and under. METHODS: Patients were recruited over a 3-year period between 1999 and 2001 from 14 hospitals in the southeast of England, UK. RESULTS: Fifty-three (80%) newly diagnosed patients with squamous cell carcinoma (SCC) of the oral cavity participated. The mean age of cases at diagnosis was 38.5 years (SD = 7.0) and 53% were male. Patients were interviewed about main risk factors of tobacco, alcohol, cannabis and their consumption of fresh fruit and vegetables in the past. Ninety-one matched control patients were also recruited. Odds ratios (ORs) and 95% confidence intervals (CI) were obtained from adjusted conditional logistic analyses. Significantly elevated ORs were evidenced amongst males who had started to smoke under the age of 16 years (OR = 14.3; 95% CI: 1.1-178.8). A significant reduction in risk was also shown for ex-smokers (OR = 0.2; 95% CI: 0.5-0.8). Consumption of alcohol in excess of recommended amounts also produced an eightfold risk in males (OR = 8.1; 95% CI: 1.6-40.1) and over a fourfold risk of oral cancer from the consumption of excessive amounts of alcohol and having ever smoked (OR = 4.4; 95% CI: 1.1-17.7). CONCLUSION: The study shows that the traditional behavioural risk factors are present in younger people diagnosed with oral cancer. The relatively short duration of exposure and the substantial number of cases without any known risk factors, particularly amongst females, however, suggest that factors other than tobacco and alcohol may also be implicated in the development of oral cancer in a proportion of these younger patients.