More than just ticking a box...how patient and public involvement improved the research design and funding application for a project to evaluate a cycling intervention for hip osteoarthritis

Background Involving patients and the public in research is an essential activity to ensure relevant, accessible, and appropriate research. There is increasing obligation from funding bodies on researchers to have well thought through plans for involving the public, and indeed it is often a condition for funding. Patient and public involvement activity in this project was conducted to inform a funding application to investigate the effectiveness of a cycling and education intervention in the treatment of hip osteoarthritis. Methods Six participants from a feasibility programme of the intervention attended a two-hour patient and public involvement consultation group to provide feedback on various aspects of the proposed research and intervention. During the consultation group, two independent facilitators followed a detailed plan formulated with the research team. Feedback was validated by the attendees via email following the consultation, and a report was issued to the research team. Further feedback on subsequent changes was sought via email and telephone with members of a Patient Advisory Group. Results The patient and public involvement consultation group provided invaluable feedback and suggestions which impacted on the design and quality of the research project and the intervention. Key changes to the intervention included extending the duration of the cycling programme from six to eight weeks, and inclusion of an exercise diary to promote adherence to the intervention. Key feedback regarding the design of the research and funding application included suggestions for methods of dissemination, and confirmation of the primary outcome measure. Conclusions Patient and public involvement was crucial to the design of the proposed research and intervention. It informed many aspects of the research design and made the funding application stronger as a result. Involving patients and the public in research is much more than an obligation, or ‘tick box’ exercise. It can change and improve research quality, which is crucial when answering questions that are meaningful and important to patients, and which leads to increased impact. Collaboration with patients and the public should be planned and reported from the conception of a research idea where the impact of such input can be considerable

Mapping oral health related quality of life to generic health state values

BACKGROUND: A summary utility index is useful for deriving quality-adjusted life years (QALY) for cost analyses or disability weights for burden of disease studies. However, many quality of life instruments provide descriptive profiles rather than a single utility index. Transforming quality of life instruments to a utility index could extend the use of quality of life instruments to costs analyses and burden of disease studies. The aims of the study were to map a specific oral health measure, the Oral Health Impact Profile to a generic health state measure, the EuroQol, in order to enable the estimation of health state values based on OHIP data. METHODS: Data were collected from patients treated by a random sample of South Australian dentists in 2001–02 using mailed self-complete questionnaires. Dentists recorded the diagnosis of dental conditions and provided patients with self-complete questionnaires to record the nature, severity and duration of symptoms using the EuroQol (EQ-5D) and 14-item version of the Oral Health Impact Profile (OHIP-14) instruments. Data were available from 375 patients (response rate = 72%). A random two-thirds sample of patients was used in tobit regressions of EQ-5D health state values estimated using OHIP-14 in a model with categories of OHIP responses as indicator variables and in a model with OHIP responses as continuous variables. Age and sex were included as covariates in both models. The remaining one-third sample of patients was used to test the models. RESULTS: The OHIP item 'painful aching in mouth' was significantly related to health state values in both models while 'life less satisfying' was also significant in the continuous model. Mean forecast errors relative to the mean observed health state value were higher when fitted to the categorical model (17.4%) compared to the continuous model (15.2%) (P < 0.05). CONCLUSION: The findings enable health state values to be derived from OHIP-14 scores for populations where utility has not or cannot be measured directly

Disability weights for the burden of oral disease in South Australia

BACKGROUND: Australian burden of disease estimates appeared inconsistent with the reported repetitive and ubiquitous nature of dental problems. The aims of the study were to measure the nature, severity and duration of symptoms for specific oral conditions, and calculate disability weights from these measures. METHODS: Data were collected in 2001–02 from a random sample of South Australian dentists using mailed self-complete questionnaires. Dentists recorded the diagnosis of dental problems and provided patients with self-complete questionnaires to record the nature, severity and duration of symptoms using the EuroQol instrument. Data were available from 378 dentists (response rate = 60%). RESULTS: Disability weights were highest for pulpal infection (0.069), caries (0.044) and dentinal sensitivity (0.040), followed by denture problems (0.026), periodontal disease (0.023), failed restorations (0.019), tooth fractures (0.014) and tooth wear (0.011). Aesthetic problems had a low disability weight (0.002), and both recall/maintenance care and oral hygiene had adjusted weights of zero. CONCLUSIONS: Disability weights for caries (0.044), periodontal disease (0.023) and denture problems (0.026) in this study were higher than comparable oral health conditions in the Australian Burden of Disease and Injury Study (0.005 for caries involving a filling and 0.014 for caries involving an extraction, 0.007 for periodontal disease, and 0.004 for edentulism). A range of common problems such as pulpal infection, failed restorations and tooth fracture that were not included in the Australian Burden of Disease and Injury Study had relatively high disability weights. The inclusion of a fuller range of oral health problems along with revised disability weights would result in oral health accounting for a larger amount of disability than originally estimated

Practice activity trends among oral and maxillofacial surgeons in Australia

BACKGROUND: The aim of this study was to describe practice activity trends among oral and maxillofacial surgeons in Australia over time. METHODS: All registered oral and maxillofacial surgeons in Australia were surveyed in 1990 and 2000 using mailed self-complete questionnaires. RESULTS: Data were available from 79 surgeons from 1990 (response rate = 73.8%) and 116 surgeons from 2000 (response rate = 65.1%). The rate of provision of services per visit changed over time with increased rates observed overall (from 1.43 ± 0.05 services per visit in 1990 to 1.66 ± 0.06 services per visit in 2000), reflecting increases in pathology and reconstructive surgery. No change over time was observed in the provision of services per year (4,521 ± 286 services per year in 1990 and 4,503 ± 367 services per year in 2000). Time devoted to work showed no significant change over time (1,682 ± 75 hours per year in 1990 and 1,681 ± 94 hours per year in 2000), while the number of visits per week declined (70 ± 4 visits per week in 1990 to 58 ± 4 visits per week in 2000). CONCLUSIONS: The apparent stability in the volume of services provided per year reflected a counterbalancing of increased services provided per visit and a decrease in the number of visits supplied

The Tempered Polymerization of Human Neuroserpin

Neuroserpin, a member of the serpin protein superfamily, is an inhibitor of proteolytic activity that is involved in pathologies such as ischemia, Alzheimer's disease, and Familial Encephalopathy with Neuroserpin Inclusion Bodies (FENIB). The latter belongs to a class of conformational diseases, known as serpinopathies, which are related to the aberrant polymerization of serpin mutants. Neuroserpin is known to polymerize, even in its wild type form, under thermal stress. Here, we study the mechanism of neuroserpin polymerization over a wide range of temperatures by different techniques. Our experiments show how the onset of polymerization is dependent on the formation of an intermediate monomeric conformer, which then associates with a native monomer to yield a dimeric species. After the formation of small polymers, the aggregation proceeds via monomer addition as well as polymer-polymer association. No further secondary mechanism takes place up to very high temperatures, thus resulting in the formation of neuroserpin linear polymeric chains. Most interesting, the overall aggregation is tuned by the co-occurrence of monomer inactivation (i.e. the formation of latent neuroserpin) and by a mechanism of fragmentation. The polymerization kinetics exhibit a unique modulation of the average mass and size of polymers, which might suggest synchronization among the different processes involved. Thus, fragmentation would control and temper the aggregation process, instead of enhancing it, as typically observed (e.g.) for amyloid fibrillation

Household income modifies the association of insurance and dental visiting

BACKGROUND Dental insurance and income are positively associated with regular dental visiting. Higher income earners face fewer financial barriers to dental care, while dental insurance provides partial reimbursement. The aim was to explore whether household income has an effect on the relationship between insurance and visiting. METHODS A random sample of adults aged 30–61 years living in Australia was drawn from the Electoral Roll. Data were collected by mailed survey in 2009–10, including age, sex, dental insurance status and household income. RESULTS Responses were collected from n = 1,096 persons (response rate = 39.1%). Dental insurance was positively associated with regular visiting (adjusted prevalence ratio (PR) = 1.18; 95% CI: 1.01-1.36). Individuals in the lowest income tertile had a lower prevalence of regular visiting than those in the highest income group (PR = 0.78; 95% CI: 0.65-0.93). Visiting for a check-up was less prevalent among lower income earners (PR = 0.65; 95% CI: 0.50-0.83). Significant interaction terms indicated that the associations between insurance and visiting varied across income tertiles showing that income modified the effect. CONCLUSIONS Household income modified the relationships between insurance and regular visiting and visiting for a check-up, with dental insurance having a greater impact on visiting among lower income groups.Olga Anikeeva, David S Brennan and Dana N Teusne