What effective ways of motivation, support and technologies help people with cystic fibrosis improve and sustain adherence to treatment?

INTRODUCTION: "What effective ways of motivation, support and technologies help people with cystic fibrosis improve and sustain adherence to treatment?" was identified as one of the James Lind Alliance Priority Setting Partnership's top 10 research questions in cystic fibrosis (CF). Using electronic questionnaires, we aimed to gain a deeper understanding of this research priority. METHOD: The work was led by the steering group representative of the UK CF community consisting of patients, carers and healthcare professionals (HCPs). Electronic questionnaires were completed over a 4-week period and promoted via online forums such as Twitter, the UK CF Trust and US CF Foundation websites and via professional networks. Analysis of the closed questions was completed using Microsoft Excel, with keyword analysis and the final thematic analysis completed using NVivo software. RESULTS: There were 313 respondents; 176/313 (56%) were from people with CF and their families. HCPs comprised of 10 professional groups accounting for 137/313 (44%) of respondents, with global involvement of participants with the majority from the UK. Common themes identified as impacting on adherence included: having no time, treatment burden, competing life demands, fatigue and the patient's general health. Having a routine was identified as the most frequently used motivational strategy, valued by both the patient and professional community. However, some strategies were valued more by HCPs than used in practice by patients; these included the use of short-term goal setting and technology use. CONCLUSION: Adherence to treatment is crucial, however it is often suboptimal and strategies valued by HCPs to promote adherence are not always shared by patients. To promote adherence clinicians and researchers should be mindful that in a condition where treatment burden and time pressures are considerable, any interventions should focus on simplifying care and reducing treatment burden.

Infection prevention and control in cystic fibrosis: One size fits all The argument against.

As awareness of the risks of cross infection has increased, infection prevention and control measures have become more draconian. Infection control measures can have a profound effect of the organisation and delivery of CF services and on the lives of people with CF outside the hospital. However, the consequences of inadequate infection control measures may be the permanent acquisition of a chronic infection which is virtually untreatable. Recommendations for infection prevention and control therefore must protect patients but should also be evidence-based and proportionate. This article will review the literature, juxtaposing evidence and popular practise.

Infection prevention and control in cystic fibrosis: a systematic review of interventions.

INTRODUCTION: Cystic fibrosis is a life-limiting genetic condition characterized by recurrent pulmonary infection. Acquisition of infection can occur from environmental reservoirs, person-to-person transmission and from the healthcare environment. Primary prevention of infections through infection prevention and control measures is an important strategy in cystic fibrosis care. Areas covered: Here we present a systematic review of the evidence base around infection prevention and control in cystic fibrosis. We found 36 studies and 7 guidelines that met our inclusion criteria. Strategies covered include cohort segregation, individual segregation, hand hygiene, facemasks, combination strategies, equipment strategies, and adherence. Quality of evidence overall was deemed low or very low. Most guideline recommendations have little or no evidence to support them. Expert opinion: Although low quality, there is an abundance of evidence suggesting segregation is beneficial in reducing pathogen spread. Undertaking high-quality studies may, therefore, be ethically challenging. Large-scale registry studies may provide a better strategy for answering questions on the efficacy of infection control policy. With the rise of antibiotic resistance, effective eradication of cystic fibrosis pathogens is becoming more difficult so primary prevention through infection control will become increasingly important over the coming years.

Do guidelines for treating chest disease in children use Cochrane Reviews effectively? A systematic review.

Cochrane Reviews summarise best evidence and should inform guidelines. We assessed the use of Cochrane Reviews in the UK guidelines for paediatric respiratory disease. We found 21 guidelines which made 1025 recommendations, of which 96 could be informed by a Cochrane Review. In 38/96 recommendations (40%), some or all of the relevant Cochrane Reviews were not cited. We linked recommendations to 140 Cochrane Reviews. In 37/140 (26%) cases, the guideline recommendation did not fully agree with the Cochrane Review. Guideline developers may fail to use Cochrane Reviews or may make recommendations which are not in line with best evidence.

Preventing childhood falls at home: meta-analysis and meta-regression.

BACKGROUND: Childhood falls are an important global public health problem, but evidence on their prevention has not been quantitatively synthesized. Despite social inequalities in childhood injury rates, there is a lack of evidence examining the effect of fall-prevention practices by social group. METHODS: A systematic review of literature was conducted up to June 2004 and meta-analysis using individual patient data to evaluate the effect of home-safety interventions on fall-prevention practices and fall-injury rates. Meta-regression examined the effect of interventions by child age, gender, and social variables. Included were 21 studies, 13 of which contributed to meta-analyses. RESULTS: Home-safety interventions increased stair-gate use (OR=1.26; 95% CI=1.05, 1.51), and there was some evidence of reduced baby-walker use (OR=0.66; 95% CI=0.43, 1.00), but little evidence of increased possession of window locks, screens, or windows with limited opening (OR=1.16, 95% CI=0.84, 1.59) or of nonslip bath mats or decals (OR=1.15; 95% CI=0.51, 2.62). Two studies reported nonsignificant effects on falls (baby-walker-related falls on flat ground [OR=1.35; 95% CI=0.64, 2.83] or down steps or stairs [OR=0.70; 95% CI=0.14, 3.49]) and medically attended falls (OR=0.78; 95% CI=0.61, 1.00). CONCLUSIONS: Home-safety education and the provision of safety equipment improved some fall-prevention practices, but the impact on fall-injury rates is unclear. There was some evidence that the effect of home-safety interventions varied by social group.