Hearing the patient voice for persistent pain intervention development: recommendations for using a bespoke online discussion forum for qualitative data collection

Introduction Understanding patients’ experiences is important when developing interventions for people living with persistent pain. Interviews and focus groups are frequently used to capture beliefs, views, and perspectives. These methods often require a commitment to a predetermined date and time that may present a barrier to participation. An asynchronous online discussion forum, specifically designed for research purposes, provides an alternative and potentially more accessible method for participation. In this article we discuss a bespoke online discussion forum, the Q-PROMPPT blog, as a case example. Methods We describe how we developed the Q-PROMPPT blog, with patient and public involvement, and its use as an innovative method for qualitative data collection in the context of developing an intervention for patients prescribed opioids for persistent pain. Drawing on our experiences we discuss the following areas: planning and design, participant recruitment and registration, and participant experience and engagement. Results We identify and address key concerns for each area of the Q-PROMPPT blog: planning and design: choosing software, assigning roles, designing the interface to promote usability; recruitment of participants: recruiting eligible participants, participant anonymity; participant experience and engagement: mitigating risk of harm, facilitating discussions, planning for forum close. Conclusion Based on our lessons learnt, we outline recommendations for using a bespoke online discussion forum as a qualitative method to inform intervention development for people living with persistent pain. These include collaboration with information communication technology teams, co-design with patient and public partners, minimising risk of imposter participants and developing trust and online community identity

Habitat complexity influences the structure of food webs in Great Barrier Reef seagrass meadows

Structural habitat complexity is a fundamental attribute influencing ecological food webs. Simplification of complex habitats occurs due to both natural and anthropogenic pressures that can alter productivity of food webs. Relationships between food web structure and habitat complexity may be influenced by multiple mechanisms, and untangling these can be challenging. We investigated whether (1) size spectra vary across a gradient of habitat complexity in seagrass meadows and (2) structural complexity changes the importance of different primary producers supporting the food web (determined using stable isotope analysis) in the Great Barrier Reef World Heritage Area. We found that moderately complex meadows had much steeper size spectra slopes, caused by a higher abundance of smaller animals and fewer larger animals, while meadows on either end of the complexity scale (low and a single meadow with very high complexity) had shallower slopes, indicative of a more balanced distribution of animal sizes across the spectrum. We also found that the importance of epiphytic algae as a food source was high in most meadows, despite the increase in seagrass surface area on which epiphytes could grow. The consistent importance of epiphytic algae suggests that the changes in the availability of different potential food sources did not affect food web structure. Our findings indicate that food web structure may change with variations in structural complexity because of changes in the abundance of smaller and/or larger animals. Food web structure and food sources are important determinants of the dynamic stability of food webs. Size spectra analysis is already used as a monitoring tool for assessing populations of key fisheries species in commercial fishing operations, and thus, we recommend using size spectra as a proxy for assessing the structure of the food webs in different types of seagrass meadows. Size spectra may be a useful indicator of how different meadows provide for ecosystem services such as fisheries

The Familial Clustering of Age at Menarche in Extended Twin Families

The timing of puberty is complex, possibly involving many genetic factors that may interact with environmental influences. Familial resemblance for age at menarche was studied in a sample of 4,995 female twins, 1,296 sisters, 2,946 mothers and 635 female spouses of male twins. They had indicated their age at menarche as part of a larger longitudinal survey. We assessed assortative mating for age at menarche, gene–environment interaction effects and estimated the heritability of individual differences in pubertal timing. There was significant evidence of gene–environment interaction, accounting for 1.5% of the variance. There was no indication of consistent mate assortment on age at menarche. Individual differences in age at menarche are highly heritable, with additive genetic factors explaining at least 70% of the true variation. An additional 1.5% of the variation can be explained by a genotype–environment interaction effect where environmental factors are more important in individuals genetically predisposed for late menarche

A questionnaire to identify patellofemoral pain in the community: an exploration of measurement properties

Background Community-based studies of patellofemoral pain (PFP) need a questionnaire tool that discriminates between those with and those without the condition. To overcome these issues, we have designed a self-report questionnaire which aims to identify people with PFP in the community. Methods Study designs: comparative study and cross-sectional study. Study population: comparative study: PFP patients, soft-tissue injury patients and adults without knee problems. Cross-sectional study: adults attending a science festival. Intervention: comparative study participants completed the questionnaire at baseline and two weeks later. Cross-sectional study participants completed the questionnaire once. The optimal scoring system and threshold was explored using receiver operating characteristic curves, test-retest reliability using Cohen’s kappa and measurement error using Bland-Altman plots and standard error of measurement. Known-group validity was explored by comparing PFP prevalence between genders and age groups. Results Eighty-four participants were recruited to the comparative study. The receiver operating characteristic curves suggested limiting the questionnaire to the clinical features and knee pain map sections (AUC 0.97 95 % CI 0.94 to 1.00). This combination had high sensitivity and specificity (over 90 %). Measurement error was less than the mean difference between the groups. Test–retest reliability estimates suggest good agreement (N = 51, k = 0.74, 95 % CI 0.52–0.91). The cross-sectional study (N = 110) showed expected differences between genders and age groups but these were not statistically significant. Conclusion A shortened version of the questionnaire, based on clinical features and a knee pain map, has good measurement properties. Further work is needed to validate the questionnaire in community samples

Mx Scripts Library: Structural Equation Modeling Scripts for Twin and Family Data

Structural equation modeling (SEM) provides a flexible tool to carry out genetic analyses of family and twin data. The basic model which decomposes the variance between and within families for a particular trait into genetic and non-genetic components can be generalized to multivariate and/ or longitudinal data, incorporate sex differences in parameter estimates, and model the effects of measured environment, candidate genes or DNA marker data. We introduce a web-based library ( http://www.psy.vu.nl/mxbib ) of scripts for uni- and multivariate genetic epidemiological analyses, as well as for linkage and genetic association tests. The scripts are written to be used with the freely available software package Mx and provide a flexible and uniform approach to the analysis of data from relatives. © 2005 Springer Science+Business Media, Inc

Weight management interventions in adults with intellectual disabilities and obesity: a systematic review of the evidence

o evaluate the clinical effectiveness of weight management interventions in adults with intellectual disabilities (ID) and obesity using recommendations from current clinical guidelines for the first line management of obesity in adults. Full papers on lifestyle modification interventions published between 1982 to 2011 were sought by searching the Medline, Embase, PsycINFO and CINAHL databases. Studies were evaluated based on 1) intervention components, 2) methodology, 3) attrition rate 4) reported weight loss and 5) duration of follow up. Twenty two studies met the inclusion criteria. The interventions were classified according to inclusion of the following components: behaviour change alone, behaviour change plus physical activity, dietary advice or physical activity alone, dietary plus physical activity advice and multi-component (all three components). The majority of the studies had the same methodological limitations: no sample size justification, small heterogeneous samples, no information on randomisation methodologies. Eight studies were classified as multi-component interventions, of which one study used a 600 kilocalorie (2510 kilojoule) daily energy deficit diet. Study durations were mostly below the duration recommended in clinical guidelines and varied widely. No study included an exercise program promoting 225–300 minutes or more of moderate intensity physical activity per week but the majority of the studies used the same behaviour change techniques. Three studies reported clinically significant weight loss (≥ 5%) at six months post intervention. Current data indicate weight management interventions in those with ID differ from recommended practice and further studies to examine the effectiveness of multi-component weight management interventions for adults with ID and obesity are justified

Healthcare practitioners' views and experiences of barriers and facilitators to weight management interventions for adults with intellectual disabilities

Background Obesity is common in adults with intellectual disabilities, yet little is known about how weight management interventions are provided for this population. Methods Semi‐structured interviews were held with 14 healthcare practitioners involved in weight management interventions in an English county. A study topic guide was developed to elicit practitioners' views and experiences of barriers and facilitators to weight management for adults with intellectual disabilities. Responses were analysed using thematic analysis. Results Several barriers are involved in weight management for people with intellectual disabilities including communication challenges, general practitioners' lack of knowledge and awareness of weight management services, inconsistencies in caring support, resource constraints, wider external circumstances surrounding the individuals and motivational issues. Facilitators include reasonable adjustments to existing weight management services. However, there is a need for specialist weight management provision for people with intellectual disabilities. Conclusions This study provides suggestions for future research, policy and practice consideration

Quality and effectiveness of osteoporosis treatment decision aids: a systematic review and environmental scan

Decision aids (DAs) are evidence-based tools that support shared decision-making (SDM) implementation in practice; this study aimed to identify existing osteoporosis DAs and assess their quality and efficacy; and to gain feedback from a patient advisory group on findings and implications for further research. We searched multiple bibliographic databases to identify research studies from 2000 to 2019 and undertook an environmental scan (search conducted February 2019, repeated in March 2020). A pair of reviewers, working independently selected studies for inclusion, extracted data, evaluated each trial’s risk of bias, and conducted DA quality assessment using the International Patient Decision Aid Standards (IPDAS). Public contributors (patients and caregivers with experience of osteoporosis and fragility fractures) participated in discussion groups to review a sample of DAs, express preferences for a new DA, and discuss plans for development of a new DA. We identified 6 studies, with high or unclear risk of bias. Across included studies, use of an osteoporosis DA was reported to result in reduced decisional conflict compared with baseline, increased SDM, and increased accuracy of patients’ perceived fracture risk compared with controls. Eleven DAs were identified, of which none met the full set of IPDAS criteria for certification for minimization of bias. Public contributors expressed preferences for encounter DAs that are individualized to patients’ own needs and risk. Using a systematic review and environmental scan, we identified 11 decision aids to inform patient decisions about osteoporosis treatment and 6 studies evaluating their effectiveness. Use of decision aids increased accuracy of risk perception and shared decision-making but the decision aids themselves fail to comprehensively meet international quality standards and patient needs, underpinning the need for new DA development