Changes in physical activity in people with idiopathic pulmonary fibrosis before and after virtual pulmonary rehabilitation: a feasibility study.

BACKGROUND: Pulmonary rehabilitation (PR) is recommended for the treatment of people with idiopathic pulmonary fibrosis (IPF). Physical activity is an important health behaviour, closely linked to survival in people with IPF. Little is known about the impact of virtual (V) PR on physical activity in people with IPF. OBJECTIVE: To explore the feasibility of conducting a trial to explore effect of virtual PR on objectively measured physical activity in people with IPF. METHODS: All patients with a diagnosis of IPF in a stable phase of the disease were invited to participate in VPR: a 10 week exercise programme delivered twice-weekly for one hour. Data were collected at baseline (BL) and post VPR (10 weeks): Kings Brief Interstitial Lung Disease (K-BILD), Exercise capacity (6-minute walk test (6MWT) or 1-minute sit-to-stand (STS)) and Physical Activity. Physical activity was measured with a triaxial accelerometer for seven days. Screening, recruitment, adherence and safety data were collected. RESULTS: 68 people were screened for this study. N = 16 participants were recruited to the study. There was one dropout. N = 15 completed VPR. All results reported in mean (standard deviation) (SD). Participants attended 18.1(2.0) of the 20 sessions. No adverse events were detected. The mean age of participants was 71.5(11.5) years, range: 47-95 years; 7 M:9 F. Mean (SD) FEV1 2.3(0.3)L, FVC 2.8(0.7)L. No statistically significant changes were observed in outcome measures apart from exercise capacity. Light physical activity increased from 152(69.4) minutes per day (n = 16) to 161.9(88.7) minutes per day (n = 14), mean change (SD) (CI) p-value: 9.9 (39.8) [-12.3 to 30.9] p = 0.4. Moderate-to-vigorous physical activity increased from 19.1(18.6) minutes per day (n = 16) to 25.7(28.3) minutes per day (n = 14), mean change (SD) (CI) p-value: 6.7 (15.5) [-2.1 to 15.1] p = 0.1. Step count increased from 3838(2847) steps per day (n = 16) to 4537(3748) steps per day (n = 14), mean change (SD) (CI) p-value: 738 (1916) [-419.3 to 1734.6] p = 0.2. K-BILD (n = 15) increased from 55.1(7.4) at BL to 55.7(7.9) post VPR mean change (SD) [95% confidence interval] (CI) p-value: 1.7(6.5) [-1.7 to 5.3], p = 0.3. 6MWT (n = 5) increased from 361.5(127.1) to 452.2(136.1) meters, mean change (SD) (CI) p-value: 63.7 (48.2) [-3.8 to 123.6], p = 0.04 and 1-minute STS increased from 17.6(3.0) (n = 11) to 23.7(6.3) (n = 10), mean change (SD) (CI) p-value 5.8 (4.6) [2.6 to 9.1], p = 0.003. CONCLUSION: VPR can improve physical activity in people with IPF. A number of important feasibility issues included recruitment, retention, adherence and safety have been reported which are crucial for future research in this area. A fully powered trial is needed to determine the response of people with IPF to PR with regard to physical activity.

Fibrotic interstitial lung disease - palliative care needs: a World-Café qualitative study.

OBJECTIVES: The importance of palliative care in those with advanced fibrotic interstitial lung diseases (F-ILD) is recognised, but the palliative care requirements of patients and caregivers affected by F-ILD regardless of disease course are not established. We set out to explore this and identify optimal solutions in meeting the needs of a F-ILD population in Ireland. METHODS: Implementing a World-Café qualitative research approach, we captured insights evolving, iteratively in interactive small group discussions in response to six predefined topics on palliative care and planning for the future. Thirty-nine stakeholders participated in the World-Café including 12 patients, 13 caregivers, 9 healthcare professionals, 4 industry representatives and 1 representative of the clergy. RESULTS: Palliative care emerged as fundamental to the care and treatment of F-ILDs, regardless of disease progression. Unmet palliative care needs were identified as psychological and social support, disease education, inclusion of caregivers and practical/legal advice for disease progression and end-of-life planning. Participants identified diagnosis as a particularly distressing time for patients and families. They called for the introduction of palliative care discussions at this early-stage alongside improvements in integrated care, specifically increasing the involvement of primary care practitioners in referrals to palliative services. CONCLUSION: Patients and caregivers need discussions on palliative care associated with F-ILD to be included at the point of diagnosis. This approach may address persisting inadequacies in service provision previously identified over the course of the last decade in the UK, Ireland and European F-ILD patient charters.

Time taken from primary care referral to a specialist centre diagnosis of idiopathic pulmonary fibrosis: an opportunity to improve patient outcomes?

For patients with IPF, length of time in healthcare systems prior to review in an ILD clinic reflects disease severity and may impact upon patient outcome https://bit.ly/2TkO26r.

Flood, disaster, and turmoil: social issues in cleft and craniofacial care and crisis relief.

OBJECTIVE: To examine social issues in the conduct of cleft and craniofacial care through relief programs in disrupted crisis contexts. METHOD: Social, health policy, and ethical analyses. RESULTS: At best, craniofacial team care is multidisciplinary, coordinated, and sustained, requiring a long-term relationship between team members, patients, and families. Disasters and societal turmoil interrupt such relationships, causing craniofacial care to become a secondary concern. Providing craniofacial team care in a crisis setting requires rebuilding disrupted coordination and communication. Crisis relief care involves a complex set of expectations and responsibilities and raises issues such as (1) quality assurance, infection control, appropriate standards of care, and follow-up care/continuity; (2) equity of access to services and clinical ethics in the context of war and/or deprivation; (3) training of visitors in the local nation or site; (4) disciplinary composition of teams, interprofessional communication/rivalry, and credentials of clinicians; (5) ownership of the site and local visitor relations; (6) fundraising and marketing strategies; and (7) ethical issues in the doctor-patient relationship. CONCLUSIONS: Specific ethical standards for international cleft and craniofacial care delivery also apply to domestic and global crisis relief contexts. Guidance on issues related to professional experience, informed consent, and continuity of care will help care providers address social and ethical issues raised in crisis relief programs. This paper proposes that the Position Paper of the American Cleft Palate-Craniofacial Association (ACPA) on International Treatment Programs should be used as a template to develop and disseminate a set of standards that apply to crisis relief.

Natural disaster and crisis: lessons learned about cleft and craniofacial care from Hurricane Katrina and the West Bank.

Cleft care is generally characterized by staged, carefully timed surgeries and long-term, team-centered follow-up. Acute and chronic crises can wreak havoc on the comprehensive team care required by children with craniofacial anomalies. In addition, there is evidence that crises, including natural disasters and chronic disruptions, such as political turmoil and poverty, can lead to an increased incidence of craniofacial anomalies. The purpose of this article is to delineate the impact of acute and chronic crises on cleft care. Hurricane Katrina in New Orleans, Louisiana, in 2005, resulted in an acute crisis that temporarily disrupted the infrastructure necessary to deliver cleft care; chronic turmoil in the West Bank/Palestine has resulted in an absence of infrastructure to deliver cleft care. Through these central examples, this article will illustrate-through the prism of cleft care-the need for (1) disaster preparedness for acute crises, (2) changing needs following acute crises that may lead to persistent chronic disruption, and (3) baseline and long-term monitoring of population changes after a disaster has disrupted a health care delivery system.

Public computing options for individuals with cognitive impairments: survey outcomes.

PURPOSE: To examine availability and accessibility of public computing for individuals with cognitive impairment (CI) who reside in the USA. METHOD: A telephone survey was administered as a semi-structured interview to 145 informants representing seven types of public facilities across three geographically distinct regions using a snowball sampling technique. An Internet search of wireless (Wi-Fi) hotspots supplemented the survey. RESULTS: Survey results showed the availability of public computer terminals and Internet hotspots was greatest in the urban sample, followed by the mid-sized and rural cities. Across seven facility types surveyed, libraries had the highest percentage of access barriers, including complex queue procedures, login and password requirements, and limited technical support. University assistive technology centres and facilities with a restricted user policy, such as brain injury centres, had the lowest incidence of access barriers. CONCLUSION: Findings suggest optimal outcomes for people with CI will result from a careful match of technology and the user that takes into account potential barriers and opportunities to computing in an individual's preferred public environments. Trends in public computing, including the emergence of widespread Wi-Fi and limited access to terminals that permit auto-launch applications, should guide development of technology designed for use in public computing environments.

Do imaginary companions die? An exploratory study.

Adults in this exploratory study usually recalled that their childhood imaginary companions faded away or were dismissed as other options for social interaction became more appealing. However, eight participants reported that their IC had died. Analysis of these deaths offers a glimpse of the child's talent for transitional thought processes that navigate between the emerging constraints of logic and the continuing appeal of fantasy. It is suggested that young children are testing the limits and possibilities of what it means to be "real" at the same time they are trying to puzzle out "alive" and "dead."

Purposes of AAC device use for persons with ALS as reported by caregivers.

Thirty-four informal caregivers who support 26 persons with ALS reported on AAC technology use. Each caregiver completed the Communication Device Use Checklist, a survey tool developed for this study based on Light's (1988) classification of the purposes of social interaction (Augmentative and Alternative Communication, 4, 66-82). The checklist includes 17 purposes of communication and asks participants to judge importance, mode, and frequency of use for each purpose. Results show that the three communication purposes used most frequently and valued as important by caregivers involve regulating the behavior of others for basic needs and wants (getting needs met; giving instructions or directions to others; and clarifying needs). Consistent reports of use and frequency for the purposes of staying connected (social closeness) and discussing important issues (information transfer) indicate that AAC technology can assist the dyad in maintaining previous relationships. The face-to-face spontaneous conversation mode is used most frequently, despite the slow rate of production, the lack of permanence, and the demands on conversational partners during message generation. Clinical and research implications are discussed.

Outcomes in pharyngoplasty: a 10-year experience.

OBJECTIVE: The outcomes of 61 patients who underwent a pharyngoplasty for velopharyngeal insufficiency were reviewed to determine potential risk factors for reoperation. DESIGN: This was a retrospective chart review of 61 consecutive patients over approximately 10 years (1993 to 2003). Variables analyzed included gender, cleft type, age at the time of pharyngoplasty, length of time between palate repair and pharyngoplasty, and associated syndromes. PARTICIPANTS: Of the 61 patients, 20 (34%) had a unilateral cleft lip and palate, 5 (8%) had a bilateral cleft lip and palate, 13 (21%) had an isolated cleft palate, 7 (11%) had a submucous cleft palate, and 16 (26%) were diagnosed with noncleft velopharyngeal insufficiency. RESULTS: Of the 61 patients, 10 (16%) required surgical revision. No statistically significant difference was found among gender, cleft type, age at the time of pharyngoplasty, the length of time between palate repair and pharyngoplasty, and associated congenital syndromes, with respect to the need for surgical revision (p > .05). Of the surgical revisions, 50% (5) were performed for a pharyngoplasty that was placed too low. CONCLUSIONS: Because 50% of the pharyngoplasty revisions had evidence of poor velopharyngeal closure and associated hypernasality resulting from low placement of the sphincter, the pharyngoplasty needs to be placed at a high level to reduce the risk for revisional surgery. The pharyngoplasty is a good operation for velopharyngeal insufficiency with an overall success rate of 84% (51 of 61) after one operation and greater than 98% (60 of 61) after two operations.