What causes Fibromyalgia? An online survey of patient perspectives.

Fibromyalgia is a severe chronic pain condition that affects every aspect of life. Causes of the condition remain unclear, and quantitative research cannot account for patients’ personal illness narratives and perceptions. This online survey gathered qualitative accounts of the perceived causes of their condition from 596 people with Fibromyalgia, which were analyzed thematically. Themes were 'Bodily Assault, Ill-health and Change;' 'Emotional Trauma and Distress;' 'Stress and Vulnerability' and 'Explaining and Authenticating Fibromyalgia.' Discussion focuses on the complexity of causation, the importance of understanding and having symptoms validated, and the potential for benefiting from patient expertise in building better practitioner-client relationships

Does offering an incentive payment improve recruitment to clinical trials and increase the proportion of socially deprived and elderly participants?

BACKGROUND: Patient recruitment into clinical trials is a major challenge, and the elderly, socially deprived and those with multiple comorbidities are often underrepresented. The idea of paying patients an incentive to participate in research is controversial, and evidence is needed to evaluate this as a recruitment strategy. METHOD: In this study, we sought to assess the impact on clinical trial recruitment of a £100 incentive payment and whether the offer of this payment attracted more elderly and socially deprived patients. A total of 1,015 potential patients for five clinical trials (SCOT, FAST and PATHWAY 1, 2 and 3) were randomised to receive either a standard trial invitation letter or a trial invitation letter containing an incentive offer of £100. To receive payment, patients had to attend a screening visit and consent to be screened (that is, sign a consent form). To maintain equality, eventually all patients who signed a consent form were paid £100. RESULTS: The £100 incentive offer increased positive response to the first invitation letter from 24.7% to 31.6%, an increase of 6.9% (P < 0.05). The incentive offer increased the number of patients signing a consent form by 5.1% (P < 0.05). The mean age of patients who responded positively to the invitation letter was 66.5 ± 8.7 years, whereas those who responded negatively were significantly older, with a mean age of 68.9 ± 9.0 years. The incentive offer did not influence the age of patients responding. The incentive offer did not improve response in the most socially deprived areas, and the response from patients in these areas was significantly lower overall. CONCLUSION: A £100 incentive payment offer led to small but significant improvements in both patient response to a clinical trial invitation letter and in the number of patients who consented to be screened. The incentive payment did not attract elderly or more socially deprived patients. TRIAL REGISTRATIONS: Standard care versus Celecoxib Outcome Trial (SCOT) (ClinicalTrials.gov identifier: NCT00447759). Febuxostat versus Allopurinol Streamlined Trial (FAST) (EudraCT number: 2011-001883-23). Prevention and Treatment of Hypertension with Algorithm Guided Therapy (British Heart Foundation funded trials) (PATHWAY) 1: Monotherapy versus dual therapy for initiating treatment (EudraCT number: 2008-007749-29). PATHWAY 2: Optimal treatment of drug-resistant hypertension (EudraCT number: 2008-007149-30). PATHWAY 3: Comparison of single and combination diuretics in low-renin hypertension (EudraCT number: 2009-010068-41). ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s13063-015-0582-8) contains supplementary material, which is available to authorized users

Suicide amongst psychiatric in-patients who abscond from the ward: a national clinical survey

<p>Abstract</p> <p>Background</p> <p>Suicide prevention by mental health services requires an awareness of the antecedents of suicide amongst high risk groups such as psychiatric in-patients. The goal of this study was to describe the social and clinical characteristics of people who had absconded from an in-patient psychiatric ward prior to suicide, including aspects of the clinical care they received.</p> <p>Methods</p> <p>We carried out a national clinical survey based on a 10-year (1997-2006) sample of people in England and Wales who had died by suicide. Detailed data were collected on those who had been in contact with mental health services in the year before death.</p> <p>Results</p> <p>There were 1,851 cases of suicide by current psychiatric in-patients, 14% of all patient suicides. 1,292 (70%) occurred off the ward. Four hundred and sixty-nine of these patients died after absconding from the ward, representing 25% of all in-patient suicides and 38% of those that occurred off the ward. Absconding suicides were characterised by being young, unemployed and homeless compared to those who were off the ward with staff agreement. Schizophrenia was the most common diagnosis, and rates of previous violence and substance misuse were high. Absconders were proportionally more likely than in-patients on agreed leave to have been legally detained for treatment, non-compliant with medication, and to have died in the first week of admission. Whilst absconding patients were significantly more likely to have been under a high level of observation, clinicians reported more problems in observation due to either the ward design or other patients on the ward.</p> <p>Conclusion</p> <p>Measures that may prevent absconding and subsequent suicide amongst in-patients might include tighter control of ward exits, and more intensive observation of patients, particularly in the early days of admission. Improving the ward environment to provide a supportive and less intimidating experience may contribute to reduced risk.</p

A systematic review of the effect of retention methods in population-based cohort studies

Background: Longitudinal studies are of aetiological and public health relevance but can be undermined by attrition. The aim of this paper was to identify effective retention strategies to increase participation in population-based cohort studies. Methods: Systematic review of the literature to identify prospective population-based cohort studies with health outcomes in which retention strategies had been evaluated. Results: Twenty-eight studies published up to January 2011 were included. Eleven of which were randomized controlled trials of retention strategies (RCT). Fifty-seven percent of the studies were postal, 21% in-person, 14% telephone and 7% had mixed data collection methods. A total of 45 different retention strategies were used, categorised as 1) incentives, 2) reminder methods, repeat visits or repeat questionnaires, alternative modes of data collection or 3) other methods. Incentives were associated with an increase in retention rates, which improved with greater incentive value. Whether cash was the most effective incentive was not clear from studies that compared cash and gifts of similar value. The average increase in retention rate was 12% for reminder letters, 5% for reminder calls and 12% for repeat questionnaires. Ten studies used alternative data collection methods, mainly as a last resort. All postal studies offered telephone interviews to non-responders, which increased retention rates by 3%. Studies that used face-to-face interviews increased their retention rates by 24% by offering alternative locations and modes of data collection. Conclusions: Incentives boosted retention rates in prospective cohort studies. Other methods appeared to have a beneficial effect but there was a general lack of a systematic approach to their evaluation

Protective parents and permissive children: what qualitative interviews with parents and children can tell us about the feasibility of juvenile idiopathic arthritis trials

Background: Patient recruitment can be very challenging in paediatric studies, especially in relatively uncommon conditions, such as juvenile idiopathic arthritis (JIA). However, involving children and young people (CYP) in the design of such trials could promise a more rapid trajectory towards making evidence-based treatments available. Studies involving CYP are advocated in the literature but we are not aware of any early stage feasibility studies that have qualitatively accessed the perspectives of parents and CYP with a long term condition to inform design and conduct of a trial. In the context of a feasibility study to inform the design of a proposed randomised controlled trial of corticosteroid induction regimen in JIA, we explored families’ perspectives on the proposed trial and on JIA trials generally. Methods: We analysed interviews with 27 participants (8 CYP aged 8–16 years and 19 parents) from four UK paediatric rheumatology centres. CYP had recently received corticosteroids to treat JIA. Audio-recorded interviews were transcribed and analysed thematically, drawing on the Framework Method. Results: Both parents and CYP were capable of engaging with the logic of the proposed trial but pointed to challenges with its design. Treatment preferences influenced willingness to participate in the proposed trial. The preferences of older children and their parents often differed, with CYP being more willing to participate in the proposed trial than parents. Families’ current treatment preferences were largely informed by past positive and negative treatment experiences. Some participants also indicated that their treatment preferences were influenced by those of their clinicians. Conclusion: Previous research has typically focused on deficits in patients’ understandings of trials. We found that both parents and CYP understood trial concepts and were able to identify potential flaws in the proposed trial. We propose recommendations to optimise the design of a planned corticosteroid induction regimen trial in JIA. Accessing both parents’ and CYP’s perspectives helps to identify and address recruitment challenges, which will ultimately optimise informed consent and future recruitment

ICAR: endoscopic skull‐base surgery

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