Plasma collection and supply in Europe: Proceedings of an International Plasma and Fractionation Association and European Blood Alliance symposium.

At the symposium organized by the International Plasma and Fractionation Association and European Blood Alliance, experts presented their views and experiences showing that the public sector and its blood establishments may strengthen the collection and increase the supply of plasma using the right strategies in plasma donor recruitment, retention and protection, scaling-up collection by increasing the number of donors within improved/new infrastructure, supportive funding, policies and legislation as well as harmonization of clinical guidelines and the collaboration of all stakeholders. Such approaches should contribute to increased plasma collection in Europe to meet patients' needs for plasma-derived medicinal products, notably immunoglobulins and avoid shortages. Overall, presentations and discussions confirmed that European non-profit transfusion institutions are committed to increasing the collection of plasma for fractionation from unpaid donors through dedicated programmes as well as novel strategies and research.

Occupational therapy services for people with autism spectrum disorders: current state of play, use of evidence and future learning priorities.

BACKGROUND: A dramatic increase in the prevalence of autism spectrum disorders and increased funding to support children with autism spectrum disorders have added to the demand for occupational therapy services. This study explored current practices and future learning priorities of Queensland occupational therapists who work in this field. METHOD: A survey in relation to occupational therapy services for people with autism spectrum disorders was distributed to all registered Queensland occupational therapists (N=2547). The development of the survey was informed by a series of focus groups comprising occupational therapy clinicians, supervisors and academics. The survey covered demographics, caseload composition, collaboration, context/setting, service-delivery models, information gathering, goal setting, interventions, perceived challenges and confidence, use of evidence, and experience of professional development and support, and future learning priorities. RESULTS: Of 818 surveys returned, 235 respondents provided services to clients with autism spectrum disorders, with young children being more likely to receive a service than adolescents or adults. A pervasive focus on sensory processing was apparent in relation to assessment, intervention, and key areas of knowledge. Around half the respondents indicated that they lacked confidence at least some of the time. Autism spectrum disorders-specific experience was a significant predictor of confidence. Many therapists reported challenges in finding useful information in the literature and reliance on conferences or workshops as their main source of evidence. Commonly identified learning priorities included new developments in the field, early intervention, school support, sensory processing and clinical reasoning. CONCLUSION: This research highlights the need for comprehensive autism spectrum disorders-specific, face-to-face training focusing on evidence-based and occupation-centred practices.

Increasing the detection rate of congenital heart disease during routine obstetric screening using cine loop sweeps.

OBJECTIVES: The purpose of this study was to demonstrate an increase in the detection rate of fetal cardiac defects using 2 cine loop sweeps. METHODS: Image reviewers examined a series of 93 cases randomly sorted, including 79 studies with normal findings and 14 studies with abnormal findings. All of the images were assessed by 5 standard criteria. Cases were classified as normal, abnormal, or indeterminate. Reviewers using the conventional approach reviewed 3 still images: the 4-chamber, left ventricular outflow tract, and right ventricular outflow tract views. Reviewers using the cine loop sweeps viewed 2 grayscale sweeps through the fetal heart in real time. The image sequences were reviewed independently by 2 experts, 3 nonexperts, and 2 sonographers blinded to each others' results. RESULTS: The cine loop sweeps had an increased detection rate of 38% for the nonexperts and 36% for the experts compared with the conventional approach. The cine loop sweeps allowed identification of all cardiac defects by at least 2 of the 7 reviewers; the percentage of cases with false-positive findings was 3.9%. With the conventional approach, 2 defects went undetected by all reviewers, and 4 defects were found by only 1 reviewer; the percentage of cases with false-positive findings was 5.4%. CONCLUSIONS: The use of cine loop sweeps has the potential to increase the detection of fetal cardiac defects without increasing the rate of false-positive findings or increasing the interpretation and decision-making times.

Non-invasive measurement of cardiac output in obese children and adolescents: comparison of electrical cardiometry and transthoracic Doppler echocardiography.

The objective of this study was to evaluate the reliability and accuracy of electrical cardiometry (EC) for the noninvasive determination of cardiac output (CO) in obese children and adolescents. We compared these results with those obtained by transthoracic echocardiography. Sixty-four participants underwent simultaneous measurement of CO. Cardiac output was measured by EC using the ICON(®) device. Simultaneously CO was determined by using transthoracic Doppler echocardiography from parasternal long-axis and apical view. The median age was 12.52 years (range 7.9-17.6 years) and 36 (56 %) were female. A strongly significant correlation was found between the COEC and COEcho measurements (p < 0.0001, r = 0.91). Significant correlations were also found between CO and age (r = 0.37, p = 0.002), weight (r = 0.57, p < 0.0001), height (0.60, p < 0.0001) and BMI (r = 0.42, p = 0.001). The mean difference between the two methods (COEC - COEcho) was 0.015 l min(-1). According to the Bland and Altman method, the upper and lower limits of agreement, defined as mean difference ±2 SD, were +1.21 and -0.91 l min(-1), respectively. Compared to the transthoracic Doppler echocardiography, Electrical Cardiometry provides accurate and reliable CO measurements in obese children and adolescents.

Co-Design and Co-Production of a Goal Setting Tool for Autistic Adolescents and Adults.

Background: A review of existing tools suggested a need for a goal setting tool for autistic people that (1) addresses the heterogeneity of autistic people to the greatest degree possible; (2) addresses a broad range of goals in areas including self-care and home living, and social, community, educational, and employment participation; (3) incorporates autism-specific adaptations such as visual supports; (4) facilitates the initial identification of goals; and (5) enables the prioritization of goals. Aim: This project aimed to develop a picture-based card-sort goal setting tool with relevant and comprehensible goal cards using a co-design and co-production process. Methods: The first three of four phases of participatory action research (PAR) used to develop the tool are presented, including (1) initial design by autistic people and professional practitioners, and co-production with an autistic graphic designer; (2) survey of 15 autistic people and 11 family members to evaluate and refine the goals, pictures, and wording; (3) second survey of 23 autistic people and 19 family members to re-evaluate and re-refine the goals, pictures, and wording. Results: Responses to open-ended survey questions recommended changing many of the pictures and some of the words on the goal cards. As the majority of respondents rated each of the 72 goals as important, they were all retained. The mean percentage approval of the pictures improved from 78% for survey 1 to 86% for survey 2. The mean percentage approval of the wording improved from 87% for survey 1 to 97% for survey 2. Conclusions: The use of a co-design and co-production methodology over three phases of PAR involving autistic people and their families resulted in many refinements to the goal cards. These iterations in the design process maximized the extent to which the goal cards are easily understood and relevant to the needs of autistic people.

Why is this an important issue?: Autistic adolescents and adults are often asked to identify their goals during planning meetings about their support services. However, the goal setting tools that exist often do not provide enough support to autistic people to come up with goals that are important to them and to explain them to others. We developed the Adolescent Adult Goal Setting Tool (AAGST) with, and for autistic people to help them set goals that are meaningful and important. What was the purpose of this study?: We developed a set of cards with pictures that autistic people could sort into piles including a "Yes­now" pile for goals they want to work on, a "No" pile for goals they do not want to work on, or a "Maybe" for goals they are not sure about. The autistic person then chooses between one and six of the most important goals from the "Yes­now" pile and places them in order from most to least important. They are then supported to put their goals into their own words and develop a plan for achieving their goals. The purpose of this study was to gather the opinions of autistic people and their family members on the goals, and the words and pictures on the cards. What did the researchers do?: We wanted to develop a set of goals that are relevant to autistic people, and goal cards with pictures and words that autistic people with a range of ages, skills, and interests can easily understand. Autistic people helped us develop the first set of the cards. We then used a survey to ask 15 autistic people and 11 family members for feedback on the cards. We modified the cards based on their feedback. We used a second survey to gather feedback from a further 23 autistic people and 19 family members. We modified the cards again according to their feedback. What were the results of the study?: Most of the autistic people and their family members rated the 72 goals as important. Based on their feedback, we modified 43 pictures, developed 8 new pictures, and changed the wording on 4 cards. On average, 97% of people who completed the second survey thought that the wording was clear and 86% thought that the pictures were clear. What do these findings add to what was already known?: Extensive feedback from autistic people and their families helped us to develop a goal setting tool to suit autistic people with a range of ages, skills, and interests. What are potential weaknesses in the study?: We do not know if the goal cards are suitable for autistic people who use methods to communicate other than speech (e.g., sign language or symbols) or autistic people from other countries or cultures. Future studies should include these people. How will these findings help autistic adults now or in the future?: The Adolescent Adult Goal Setting Tool supports autistic people to express their wishes during planning meetings, giving them more choice and control over their futures.

Parents' and service providers' perceptions of the family goal setting tool: a pilot study.

BACKGROUND: This qualitative study describes parents' and service providers' experiences in using the Family Goal Setting Tool (FGST). This article looks specifically at the tool's perceived clinical utility during annual, collaborative goal setting. METHODS: Participants included eight parents and ten service providers involved in a Family and Early Childhood Service in Queensland, Australia. Participants were interviewed individually (parents and one service provider) or in a focus group (service providers). The transcribed interviews were analysed using standard content analysis techniques. RESULTS: Four key themes emerged including: (i) the facilitation of goal setting, (ii) strengths-based focus, (iii) family centred processes and (iv) family empowerment. CONCLUSIONS: Both parents' and service providers' were positive about the FGST. Insights into barriers to holistic goal setting and the clinical utility of the tool are described. Further refinement of the tool and trial in a range of early intervention contexts is required.

Dupuytren's interventions surgery versus collagenase (DISC) trial: study protocol for a pragmatic, two-arm parallel-group, non-inferiority randomised controlled trial.

BACKGROUND: Dupuytren's contracture is a fibro-proliferative disease of the hands affecting over 2 million UK adults, particularly the white, male population. Surgery is the traditional treatment; however, recent studies have indicated that an alternative to surgery-collagenase clostridium histolyticum (collagenase)-is better than a placebo in the treatment of Dupuytren's contracture. There is however no robust randomised controlled trial that provides a definitive answer on the clinical effectiveness of collagenase compared with limited fasciectomy surgery. Dupuytren's intervention surgery vs collagenase trial (DISC) trial was therefore designed to fill this evidence gap. METHODS/DESIGN: The DISC trial is a multi-centre pragmatic two-arm parallel-group, randomised controlled trial. Participants will be assigned 1:1 to receive either collagenase injection or surgery (limited fasciectomy). We aim to recruit 710 adult participants with Dupuytren's contracture. Potential participants will be identified in primary and secondary care, screened by a delegated clinician and if eligible and consenting, baseline data will be collected and randomisation completed. The primary outcome will be the self-reported patient evaluation measure assessed 1 year after treatment. Secondary outcome measures include the Unité Rhumatologique des Affections de la Main Scale, the Michigan Hand Questionnaire, EQ-5D-5L, resource use, further procedures, complications, recurrence, total active movement and extension deficit, and time to return to function. Given the limited evidence comparing recurrence rates following collagenase injection and limited fasciectomy, and the importance of a return to function as soon as possible for patients, the associated measures for each will be prioritised to allow treatment effectiveness in the context of these key elements to be assessed. An economic evaluation will assess the cost-effectiveness of treatments, and a qualitative sub-study will assess participants' experiences and preferences of the treatments. DISCUSSION: The DISC trial is the first randomised controlled trial, to our knowledge, to investigate the clinical and cost-effectiveness of collagenase compared to limited fasciectomy surgery for patients with Dupuytren's contracture. TRIAL REGISTRATION: Clinical.Trials.gov ISRCTN18254597 . Registered on April 11, 2017.

Le Fort I advancement osteotomies of 1 cm or more. How safe or stable?

We studied the results and stability of Le Fort I maxillary osteotomies with advancement of at least 1cm. We analysed prospective data from 32 consecutive patients who were operated on by a single surgeon between 1985 and 2007, and who had mean advancement of the maxilla of 14 mm (range 10-22 mm). Mean relapse for all cases antero-posteriorly was 1mm, 10% (range 0-4mm). Relapse was marginally greater in the 24 patients with a repaired cleft palate (11%) compared with those without a cleft (8%). The results were essentially stable at least one year after surgery and without significant complications. This study indicates that Le Fort I osteotomies of 1cm or more carried out in the way described are safe and stable.

Academic-correctional health partnerships: preparing the correctional health workforce for the changing landscape-focus group research results.

Providing health care in corrections is challenging. Attracting clinicians can be equally challenging. The future holds a shortage of nurses and primary care physicians. We have a unique opportunity, now, to develop and stabilize our workforce, create a positive image, and enhance quality before the health care landscape changes even more dramatically. Focus groups were conducted with 22 correctional health care professionals divided into three groups: physicians (6), nurses (4), and nurse practitioners/physician assistants (12). Content focused on curricular themes, but additional themes emerged related to recruitment and retention. This article describes recruitment challenges, strategic themes identified, and the proposed initiatives to support a stable, high-quality correctional health workforce.

Significant impact of cutaneous T-cell lymphoma on patients' quality of life: results of a 2005 National Cutaneous Lymphoma Foundation Survey.

BACKGROUND: Cutaneous T-cell lymphoma (CTCL) can have a profound impact on a patient's health-related quality of life; however, little is known about its actual impact. The authors evaluated patients' perspectives on the impact of CTCL on physical functioning, lifestyle, emotional well being, and satisfaction with treatment. METHODS: A 4-page, self-administered questionnaire was mailed and made available online in March 2005 to the entire United States membership of the Mycosis Fungoides Foundation (n = 930 members). Outcome measures were patients' perspectives on the psychosocial impact of CTCL and the management of their disease. RESULTS: The response rate was 68%, and 93.6% of respondents were white. The majority of respondents had mycosis fungoides (89%). Respondents were bothered by skin redness (94%) and by the extent of symptoms that affected their choice of clothing (63%). For most patients, the disease had a functional impact, rendering them tired or affecting their sleep. Health distress was reported by almost all respondents, with 94% reporting that they worried about the seriousness of their disease and 80% worrying about dying from the disease. Sixty-two percent of respondents reported that their disease made them feel unattractive, 85% reported that their treatment made their disease seem more manageable, but 61% reported that they felt burdened financially by their disease. CONCLUSIONS: The high response rate and patients' responses to the survey provided compelling evidence that patients believed CTCL had a profound and severe impact on their functioning, emotional, and social well being. A striking health distress was prevalent in almost all respondents. Although the majority of patients reported that treatments made their disease more manageable, a significant proportion reported that they felt burdened financially by their disease.