Establishing key criteria to define and compare models of specialist palliative care: A mixed-methods study using qualitative interviews and Delphi survey.

BACKGROUND: Specialist palliative care services have various configurations of staff, processes and interventions, which determine how care is delivered. Currently, there is no consistent way to define and distinguish these different models of care. AIM: To identify the core components that characterise and differentiate existing models of specialist palliative care in the United Kingdom. DESIGN: Mixed-methods study: (1) semi-structured interviews to identify criteria, (2) two-round Delphi study to rank/refine criteria, and (3) structured interviews to test/refine criteria. SETTING/PARTICIPANTS: Specialist palliative care stakeholders from hospice inpatient, hospital advisory, and community settings. RESULTS: (1) Semi-structured interviews with 14 clinical leads, from eight UK organisations (five hospice inpatient units, two hospital advisory teams, five community teams), provided 34 preliminary criteria. (2) Delphi study: Round 1 (54 participants): thirty-four criteria presented, seven removed and seven added. Round 2 (30 participants): these 34 criteria were ranked with the 15 highest ranked criteria, including setting, type of care, size of service, diagnoses, disciplines, mode of care, types of interventions, 'out-of-hours' components (referrals, times, disciplines, mode of care, type of care), external education, use of measures, bereavement follow-up and complex grief provision. (3) Structured interviews with 21 UK service leads (six hospice inpatients, four hospital advisory and nine community teams) refined the criteria from (1) and (2), and provided four further contextual criteria (team purpose, funding, self-referral acceptance and discharge). CONCLUSION: In this innovative study, we derive 20 criteria to characterise and differentiate models of specialist palliative care - a major paradigm shift to enable accurate reporting and comparison in practice and research.

Development and validation of a casemix classification to predict costs of specialist palliative care provision across inpatient hospice, hospital and community settings in the UK: a study protocol.

INTRODUCTION: Provision of palliative care is inequitable with wide variations across conditions and settings in the UK. Lack of a standard way to classify by case complexity is one of the principle obstacles to addressing this. We aim to develop and validate a casemix classification to support the prediction of costs of specialist palliative care provision. METHODS AND ANALYSIS: Phase I: A cohort study to determine the variables and potential classes to be included in a casemix classification. Data are collected from clinicians in palliative care services across inpatient hospice, hospital and community settings on: patient demographics, potential complexity/casemix criteria and patient-level resource use. Cost predictors are derived using multivariate regression and then incorporated into a classification using classification and regression trees. Internal validation will be conducted by bootstrapping to quantify any optimism in the predictive performance (calibration and discrimination) of the developed classification. Phase II: A mixed-methods cohort study across settings for external validation of the classification developed in phase I. Patient and family caregiver data will be collected longitudinally on demographics, potential complexity/casemix criteria and patient-level resource use. This will be triangulated with data collected from clinicians on potential complexity/casemix criteria and patient-level resource use, and with qualitative interviews with patients and caregivers about care provision across difference settings. The classification will be refined on the basis of its performance in the validation data set. ETHICS AND DISSEMINATION: The study has been approved by the National Health Service Health Research Authority Research Ethics Committee. The results are expected to be disseminated in 2018 through papers for publication in major palliative care journals; policy briefs for clinicians, commissioning leads and policy makers; and lay summaries for patients and public. TRIAL REGISTRATION NUMBER: ISRCTN90752212.

Good test-retest reproducibility for an instrument to capture self-reported melanoma risk factors.

OBJECTIVE: To examine the test-retest reliability and validity of self-reported items capturing phenotypic characteristics and sun exposure measures in the baseline survey instrument used for a prospective study of skin cancer and melanoma. STUDY DESIGN AND SETTING: Repeatability/validity study conducted among 114 participants randomly selected from the cohort to complete the survey instrument a second time and to undergo a physician skin examination. We calculated intraclass correlation coefficients (ICCs) and kappa (κ) statistics as measures of agreement for continuous and categorical measures, respectively. RESULTS: Measures of phenotypic characteristics showed moderate-to-high agreement (e.g., eye color, κ=0.87; 95% confidence interval [CI]: 0.80, 0.94). Measures of sun exposure had slightly lower estimates of agreement. The repeatability of items relating to medical and family history of skin cancer was high (e.g., the number of skin cancers removed surgically, κ(w)=0.79; 95% CI: 0.71, 0.88). Physician counts of nevi correlated well with categorical measures of self-reported nevus density at the age of 21 years but correlated only modestly with absolute nevus counts conducted by participants (ICC, 0.38; 95% CI: 0.19, 0.54). CONCLUSION: Our survey instrument demonstrated fair-to-good test-retest reliability for most self-reported risk factors for melanoma, indicating the suitability of these items for developing risk prediction tools in the future.

Cohort profile: the QSkin Sun and Health Study.

The QSkin Sun and Health Study comprises a cohort of 43 794 men and women aged 40-69 years randomly sampled from the population of Queensland, Australia in 2011. The cohort was established to study the development of skin cancer and melanoma in the population with the highest reported incidence of these diseases in the world. At baseline, besides demographic items and general medical history, information about standard pigmentary characteristics (including hair and eye colour, freckling tendency, tanning ability and propensity to sunburn), past and recent history of sun exposure and sunburns, sun protection behaviours, use of tanning beds and history of skin cancer was collected by self-completed questionnaire. Participants have given their consent for data linkage to the universal national health insurance scheme and for linkage to cancer registries and pathology databases, thus ensuring complete ascertainment of all future skin cancer and melanoma occurrences and medical treatments and other cancer events. Linkage to these registers will occur at predetermined intervals. Approval to access QSkin data can be obtained on application to the study investigators and submission of a formal research plan that has previous approval from the human research ethics committee of the applicant's institution.

Current and past smoking significantly increase risk for Barrett's esophagus.

BACKGROUND & AIMS: Barrett's esophagus (BE) is the precursor to esophageal adenocarcinoma; the incidence of this cancer is rapidly increasing in Western populations. However, few population-based studies of BE have been conducted, so little is known about potentially modifiable causes of this disease. METHODS: The study included patients with newly diagnosed BE, confirmed by histology and categorized as simple BE (without dysplasia, n = 285) or dysplastic BE (with dysplasia, n = 108). We recruited 2 separate control groups: endoscopy patients with acute inflammatory changes (inflammation controls, n = 313) and population controls sampled from a population register (n = 644). Data were collected through standardized questionnaires and telephone interviews. We fit logistic regression models to calculate odds ratios (ORs) for BE associated with salient exposures by using each set of controls. RESULTS: Relative to never smokers, risks of simple BE were significantly higher among former smokers (OR, 2.39; 95% confidence interval, 1.59-3.60) and current smokers (OR, 2.41; 95% confidence interval, 1.39-4.17), compared with population controls. Smoking conferred more than a 4-fold increase in risk for dysplastic BE; this increase in risk remained long after individuals quit smoking. We found no conclusive association between BE and passive smoking and no evidence of independent associations between body mass index (BMI) and simple BE or dysplastic BE, after adjusting for reflux and other factors. Analyses with inflammation controls produced qualitatively similar risk estimates for smoking and BMI to those obtained for population controls, but they were markedly attenuated for reflux, as expected. CONCLUSIONS: Current and past smoking significantly increases risk for BE, but BMI does not, after adjustment for the effect of reflux.

Interactions among smoking, obesity, and symptoms of acid reflux in Barrett's esophagus.

BACKGROUND: Barrett's esophagus, a metaplastic precursor to esophageal adenocarcinoma, is becoming increasingly prevalent in many populations. Clinical studies suggest acid reflux causes Barrett's esophagus; however, no population-based estimates of risk have been reported, and the role of other health factors in modifying risk is unclear. METHODS: We conducted a population-based case-control study in Brisbane, Australia. Cases were 167 patients with histologically confirmed Barrett's esophagus diagnosed between February and December 2003. Age-matched and sex-matched controls (n = 261) were randomly selected from a population register. Data on exposure to self-reported symptoms of acid reflux, smoking, obesity, and other factors were collected through self-completed questionnaires followed by telephone interview. Risks of Barrett's esophagus and Barrett's esophagus with dysplasia associated with these exposures were estimated by the odds ratio (OR) and 95% confidence interval (95% CI), both crude and adjusted for other factors. RESULTS: Self-reported weekly episodes of acid reflux were associated with greatly increased risks of Barrett's esophagus (adjusted OR, 29.7; 95% CI, 12.2-72.6) and Barrett's esophagus with dysplasia (OR, 59.7; 95% CI, 18.5-193). Smoking was also associated with risk of Barrett's esophagus. We found evidence of interactions between symptoms of acid reflux and smoking and obesity. Obese people with self-reported symptoms of acid reflux had markedly higher risks of Barrett's esophagus (OR, 34.4; 95% CI, 6.3-188) than people with reflux alone (OR, 9.3; 95% CI, 1.4-62.2) or obesity alone (OR, 0.7; 95% CI, 0.2-2.4). Similarly, those reporting both acid reflux symptoms and smoking were at substantially higher risks of Barrett's esophagus (OR, 51.4; 95% CI, 14.1-188) than those reporting acid reflux or smoking alone. CONCLUSIONS: Although history of symptoms of acid reflux is the principle factor associated with Barrett's esophagus, risks are substantially increased by obesity and smoking.