A comparison of patient-reported outcomes in patients undergoing abdominal wall repair with either synthetic or biosynthetic mesh: a pilot study.

PURPOSE: Repair of midline ventral incisional hernias (VIHR) requires mesh reinforcement. Mesh types can be categorised into synthetic, biosynthetic, or biological. There is a lack of evidence to support one type of mesh over another. The aim of this pilot study was to compare mesh sensation in patients having undergone elective open repair with synthetic or biosynthetic mesh. METHODS: Four years of prospectively collected data were retrospectively reviewed on 40 patients who had undergone VIHR, using either biosynthetic or synthetic mesh placed in the retromuscular plane. The decision on type of mesh used was governed by patient characteristics. Patients were invited to complete the Carolinas Comfort Scale (CCS) questionnaire, the higher the score indicating a poorer quality of life. The maximum length of follow-up was 36 months. RESULTS: Twenty patients received permanent synthetic and 20 biosynthetic mesh. There was no clinical evidence of hernia recurrence in either group in the short to medium term. Overall, 97% (39/40) patients reported an average of either no or mild symptoms (mean CCS score 17.9 of 115). Patients with a biosynthetic repair had a significant lower CCS at ≥ 18 months (p < 0.05). CONCLUSION: After VIHR, patients have low CCS scores, indicating good quality of life outcomes, in the short to medium term irrespective of the mesh used. However, biosynthetic mesh had lower CCS scores in the medium term. This may help surgeons and patients make better informed decisions about which mesh to use in their individual circumstances.

Can exercise replace airway clearance techniques in cystic fibrosis? A survey of patients and healthcare professionals.

Airway clearance techniques (ACTs) are recommended in cystic fibrosis (CF) to prevent accumulation of secretions and lung infection. "Can exercise replace chest physiotherapy for people with CF?" is one of the CF community's top 10 research questions. We conducted an online survey of the CF community to gather data on current ACT use, recommendations, reported adherence levels and exercise strategies used. There were 488 respondents: 194 (40%) people with CF (pwCF), 141 (29%) family and 153 (31%) healthcare professionals (HCPs) (mostly physiotherapists). Only 10/285 (4%) of pwCF do no exercise at present and 163/303 (54%) already incorporate exercise into ACTs. ACTs were omitted by 128/267 (48%) of pwCF when they exercised. Nearly all (110/129, 93%) of HCPs currently recommend exercise to support ACTs. A trial replacing some or all ACTs with exercise, was supported by 80/110 (73%) of HCPs, with an additional 9/110 (8%) willing to consider in selected patients.

Adapting the James Lind Alliance priority setting process to better support patient participation: an example from cystic fibrosis.

PLAIN ENGLISH SUMMARY: Cystic fibrosis (CF) is the commonest life-limiting inherited disorder in the UK. It affects many parts of the body including the lungs and gut leading to increased infection and problems digesting food. People with CF need to undergo many treatments each day throughout their whole lives. These include tablets, inhalers and breathing exercises, which are a huge burden, taking up several hours every dayIt is therefore, really important that the treatments we give are supported by good evidence, usually gathered from clinical trials. Unfortunately, we do not have good evidence for many of the CF treatments. We recently ran an exercise known as a James Lind Alliance Priority Setting Partnership (JLA PSP) to find out which the CF community feel are the top priority research questions. People with CF and those who look after them suggested questions to be answered by clinical trials. Through a series of online surveys and workshops these were then shortlisted to give a final top ten.Due to infection risk people with CF are advised not to mix, this meant we had to do things differently to the usual way JLA PSPs are carried out. We used videoconferencing to enable multiple people with CF to participate. Surveys were accessible online and promoted through social media. ABSTRACT: Background The James Lind Alliance (JLA) method is well recognised for setting research priorities. The JLA approach involves a combination of surveys and workshop interactions between patients, carers and health care professionals to identify and agree on a "top ten" list of research questions. Respiratory infection is one of the hallmarks of cystic fibrosis (CF). To avoid cross infection, patients are advised not to meet face to face, preventing us following standard JLA methodology. Here we describe adaptations made during our recent JLA Priority Setting Partnership (PSP) in CF. Methods We elicited and prioritised research questions, using sequential online surveys, promoted through social media. People with CF participated in steering committee meetings and the final workshop, using videoconferencing. Alterations to workshop methodology enabled participants attending in person and those joining remotely, to contribute equally. We also altered the JLA methodology to include "lone" questions, asked by only one survey respondent. We are now working with the CF community to co-produce research projects that answer these top ten. Results There were 482 respondents, from 23 countries, who submitted 1080 questions. Increases in the number of responses occurred just after promotion on social media. Use of videoconferencing enabled participation of multiple people with CF and ensured participation from anywhere in the world, including hospital inpatients. Inclusion of lone questions resulted in one being included in our top ten. Conclusions There is no "one-size-fits-all" for patient involvement methodologies. Through altering the JLA methods to fit our patient group we achieved wide participation. We believe that methods used in our project may also be applied to future partnerships to increase participation, especially where people may be hospitalised or be unable to travel. The methodology we are developing through the JLA PSP CF2 project may be useful for other PSPs to follow.