scholarly journals How can we relieve gastrointestinal symptoms in people with cystic fibrosis? An international qualitative survey

2020 ◽  
Vol 7 (1) ◽  
pp. e000614
Author(s):  
Sherie Smith ◽  
Nicola Rowbotham ◽  
Gwyneth Davies ◽  
Katie Gathercole ◽  
Sarah J Collins ◽  
...  

IntroductionRelieving gastrointestinal (GI) symptoms was identified as a ‘top ten’ priority by our James Lind Alliance Priority Setting Partnership in cystic fibrosis (CF). We conducted an online survey to find out more about the effect of GI symptoms in CF.MethodsWe co-produced an online survey distributed to the CF community via web-based platforms. The survey consisted of open and closed questions designed to help us learn more about the effects of GI symptoms for people with CF (pwCF). We analysed the data using descriptive statistics and thematic analysis. We promoted the survey via social media and web-based platforms which allowed respondents from any country to take part. Our participants came from the CF community, including: adults and children with CF, parents and close family of pwCF and healthcare professionals (HCPs) working with pwCF.ResultsThere were 276 respondents: 90 (33%) pwCF, 79 (29%) family, 107 (39%) HCPs. The most commonly reported symptoms by lay respondents were stomach cramps/pain, bloating and a ‘combination of symptoms’. The top three symptoms that HCPs said were reported to them were reduced appetite, bloating and constipation. Almost all (94% (85/90)) HCPs thought medications helped to relieve GI symptoms but only 58% (82/141) of lay respondents agreed.ConclusionsOur survey has shown that GI symptoms among our participants are prevalent and intrude on daily lives of pwCF. There is a need for well-designed clinical studies to provide better evidence for management of GI symptoms and complications.

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Nicola Hurley ◽  
Bróna Kehoe ◽  
Noel McCaffrey ◽  
Karen Redmond ◽  
Lydia Cullen ◽  
...  

Abstract Background Physical activity (PA) is a well-established therapeutic modality for the maintenance and improvement of long-term health in cystic fibrosis (CF). Healthcare professionals (HCP) are considered credible and well-placed messengers for the delivery of PA advice. Limited research exists investigating the extent of PA prescription within CF care. This study aimed to identify Irish HCP i) knowledge and practice of, and ii) motivators and barriers to PA prescription, and iii) proposed strategies to optimize PA promotion and prescription in CF populations. Methods HCP from six designated CF centres in Ireland and members of the national physiotherapy CF clinical interest group were invited to participate. Following an expression of interest, each HCP (n = 81) received an email containing the plain language statement and link to the online survey. 48 HCP (physiotherapists n = 24, other n = 24) completed the 30-item investigator-developed survey, which included multiple choice single answer, matrix style and open-ended questions. Results Most HCP (81%) acknowledged that discussing PA with CF patients was part of their professional role. Almost all physiotherapists (95%) reported having sufficient knowledge regarding PA prescription, compared to 17% of other HCP. All physiotherapists reported discussing PA at every patient interaction, with 81% employing the current consensus guidelines, compared to 33 and 5% of other HCP, respectively. Among the most common barriers reported by HCP to recommending PA to their CF patients were; lack of motivation and compliance among patients to adhere to PA advice, limited availability of PA programmes to refer their patients to, limited time with patients during clinic visits and a lack of knowledge regarding PA prescription for CF care. Three-quarters of HCP reported a need to improve PA services for CF patients in Ireland. Conclusion As people with CF are living longer, it is imperative that HCP are expanding their scope of practice to include discussions around PA at every patient visit. Formal educational opportunities in the form of continuing professional development programmes are warranted for CF HCP to optimize long-term patient management and outcomes. There is also a need to develop patient-centered and evidence-based PA programmes underpinned by theories of behaviour change to enhance motivation and compliance among CF patients.


2021 ◽  
Vol 5 (Supplement_2) ◽  
pp. 219-219
Author(s):  
Alexa Evenson ◽  
Jillian Knapek

Abstract Objectives To determine 1) the relationships between gastrointestinal (GI) symptoms and State and Trait anxiety in college students during the COVID-19 pandemic and 2) sex differences in GI symptoms and State and Trait anxiety. Methods College students (n = 459; aged 18–23) at a midwestern university completed an online survey in mid-April 2020, which included the State and Trait Inventory for Cognitive and Somatic Anxiety (STICSA) and an amended Gastrointestinal Symptoms Questionnaires. Spearman rho correlation coefficients and Mann-Whitney U tests were used to analyze the data. Results The overall sample reported a mean of 5.61(5.43) of GI symptoms. Moderate to severe symptoms of abdominal bloating (31.8%), nausea (16.2%), passing gas (29.1%), abdominal rumbling (28.1%), abdominal cramping (20.4%), diarrhea (18.8%), and constipation (14.7%) were reported in participants. Females had greater GI symptoms compared to males (Females: 6.16 ± 5.39; Males: 4.01 + 4.46; U = 15108.00; P < .001). Females also exhibited higher total State (females: 40.60 + 12.79; males: 35.24 + 11.69; U = 15348.5; P < .001) and Trait (Females: 31.26 + 9.99; Males: 28.52 + 7.59:  U = 16218.5; P < .001) anxiety scores compared to males. Higher GI symptoms were significantly related to higher State-Cognitive (rs = .476; P < .01); State-Somatic (rs = .525; P < .01); Trait-Cognitive (rs = .367; P < .01); and Trait-Somatic (rs = .500; P < .01) anxiety subscales scores. Conclusions GI symptoms and anxiety were prominent in our sample during the COVID-19 pandemic. Females exhibited higher GI symptoms and State and Trait anxiety compared to males. GI symptoms were positively correlated with State and Trait anxiety. It may be warranted to screen individuals, especially females, for anxiety when presenting with GI symptoms. Funding Sources None


2020 ◽  
Author(s):  
Nicola Hurley ◽  
Bróna Kehoe ◽  
Noel McCaffrey ◽  
Karen Redmond ◽  
Lydia Cullen ◽  
...  

Abstract Background: Physical activity (PA) is a well-established therapeutic modality for the maintenance and improvement of long-term health in cystic fibrosis (CF). Healthcare professionals (HCP) are considered credible and well-placed messengers for the delivery of PA advice. Limited research exists investigating the extent of PA prescription within CF care. This study aimed to identify Irish HCP i) knowledge and practice of, and ii) motivators and barriers to PA prescription, and iii) proposed strategies to optimize PA promotion and prescription in CF populations.Methods: HCP from six designated CF centres in Ireland and members of the national physiotherapy CF clinical interest group were invited to participate. Following an expression of interest, each HCP (n=81) received an email containing the plain language statement and link to the online survey. 48 HCP (physiotherapists n=24, other n=24) completed the 30-item investigator-developed survey, which included multiple choice single answer, matrix style and open-ended questions.Results: Most HCP (81%) acknowledged that discussing PA with CF patients was part of their professional role. Almost all physiotherapists (95%) reported having sufficient knowledge regarding PA prescription, compared to 17% of other HCP. All physiotherapists reported discussing PA at every patient interaction, with 81% employing the current consensus guidelines, compared to 33% and 5% of other HCP, respectively. Among the most common barriers reported by HCP to recommending PA to their CF patients were; lack of motivation and compliance among patients to adhere to PA advice, limited availability of PA programmes to refer their patients to, limited time with patients during clinic visits and a lack of knowledge regarding PA prescription for CF care. Three-quarters of HCP reported a need to improve PA services for CF patients in Ireland.Conclusion: As people with CF are living longer, it is imperative that HCP are expanding their scope of practice to include discussions around PA at every patient visit. Formal educational opportunities in the form of continuing professional development programmes are warranted for CF HCP to optimize long-term patient management and outcomes. There is also a need to develop patient-centered and evidence-based PA programmes underpinned by theories of behaviour change to enhance motivation and compliance among CF patients.


2009 ◽  
Vol 43 (5) ◽  
pp. 890-898 ◽  
Author(s):  
Els Mehuys ◽  
Luc Van Bortel ◽  
Leen De Bolle ◽  
Inge Van Tongelen ◽  
Jean-Paul Remon ◽  
...  

Background Upper gastrointestinal (GI) symptoms are a common reason for self-treatment with over-the-counter (OTC) medication. However, data are scarce on the typology of GI complaints for which individuals seek self-medication and, more importantly, on the prevalence of alarm symptoms in this population. Objective To investigate: (1) the nature of GI symptoms that people intend to self-medicate, (2) prevalence of alarm symptoms, (3) adherence to referral advice given by the pharmacist, and (4) self-reported efficacy and frequency of use of OTC medication for minor complaints. Methods This descriptive study was performed in 63 community pharmacies. Participants (N = 592, aged 18–82 y) completed a questionnaire to assess symptom characteristics and previous medical consulting. Based on this information, the pharmacist referred subjects to a physician or advised self-treatment. Four weeks later, participants were presented a follow-up questionnaire evaluating their adherence to referral advice or efficacy of self-treatment. Results The most frequently reported GI symptoms were burning retrosternal discomfort (49.2%), acid regurgitation (53.2%), and bothersome postprandial fullness (51.2%). At least one alarm symptom was present in 22.4% of the individuals, with difficulty in swallowing being the most prevalent (15.4%). Although 21% of the customers were referred, only 51.7% of these contacted a physician. Almost all (95.1%) of the remaining customers who were advised self-treatment reported symptom relief with the OTC drug obtained. Conclusions Mild GI symptoms will mostly resolve with self-treatment. Yet, the value of pharmacist counseling on OTC treatment should be recognized, as community pharmacists can play an important role in distinguishing symptoms that warrant further medical examination.


2020 ◽  
Author(s):  
Nicola Hurley ◽  
Bróna Kehoe ◽  
Noel McCaffrey ◽  
Karen Redmond ◽  
Lydia Cullen ◽  
...  

Abstract Background: Physical activity (PA) is a well-established therapeutic modality for the maintenance and improvement of long-term health in cystic fibrosis (CF). Health care professionals (HCP) play a significant role in the promotion of PA behaviours. Limited research exists investigating the extent of PA prescription within CF care. This study aimed to identify Irish HCP i) knowledge and practice of prescribing PA, ii) motivation and barriers of PA prescription; and iii) proposed strategies to optimize PA promotion and prescription in CF populations.Methods: 48 HCP (physiotherapists n=24, other n=24) from six CF centers in Ireland and members of the national physiotherapy clinical interest group completed a 30-item online survey. Results: Most HCP (81%) acknowledged that discussing PA with CF patients was part of their professional role. Almost all physiotherapists (95%) reported having sufficient knowledge regarding PA prescription, compared to 17% of other HCP. All physiotherapists reported discussing PA at every patient interaction, with 81% employing the current consensus guidelines, compared to 33% and 5% of other HCP, respectively. Among the most common barriers reported by HCP to prescribing PA to their CF patients were; lack of motivation and compliance among patients to adhere to PA advice, limited availability of PA programmes to refer their patients to, limited time with patients during clinic visits, lack of knowledge regarding PA prescription for CF care, and patients’ health status deeming PA inappropriate. Three-quarters of HCP reported a need to improve PA services for CF patients in Ireland.Conclusion: As people with CF are living longer, it is imperative that HCP are expanding their scope of practice to consistently include discussions around PA at every patient visit, as physical fitness has been shown to be a key predictor of longevity and quality of life in patients with CF. Formal educational opportunities in the form of continuing professional development programmes, with respect to PA prescription for CF populations, are warranted for CF HCP to optimize long-term patient management and outcomes. There is also a need to introduce or enhance motivational interviewing during patient interactions, to elicit positive PA behaviour change.


Vaccines ◽  
2021 ◽  
Vol 9 (11) ◽  
pp. 1372
Author(s):  
Paul Loubet ◽  
Jalini Rouvière ◽  
Adeline Merceron ◽  
Odile Launay ◽  
Albert Sotto ◽  
...  

Introduction: The objective of our study was to assess, in an at-risk population, perception and knowledge about influenza and pneumococcal vaccinations. Methods: An anonymous web-based survey was submitted to patients recruited in France, from both an Ipsos internal panel and AVNIR patient associations. The study was conducted between July and October 2020, in the context of the COVID-19 pandemic. Results: Overall, 2177 questionnaires from patients at risk of infection were analyzed. Almost all respondents (86%, 1869/2177) declared themselves to be favorable to vaccination. Nearly half of the patients (49%, 1069/2177) were aware of which vaccine was recommended for their specific situation. This percentage was significantly (p < 0.001) higher for members of a patient association and for people affected by multiple chronic conditions and varied according to the type of condition. Almost two-thirds of patients (1373/2177) declared having been vaccinated during the 2019/2020 influenza season, and 41% (894/2177) were certain about being up to date with the pneumococcal vaccination. The main barriers to vaccination for influenza are the fear of side effects, doubt regarding the efficacy of the vaccine and for pneumococcal vaccination, and the absence of suggestions by the healthcare professionals (HCPs), as 64% of respondents were not recommended to obtain pneumococcal vaccination. To improve vaccine coverage, information is of prime importance and GPs are recognized as the main HCP to inform about vaccination. Nearly two-thirds (62%, 1360/2177) of patients declared that the COVID-19 pandemic convinced them to have all the recommended vaccines. Conclusion: Our study highlighted the nonoptimal vaccine coverage in at-risk populations despite a highly positive perception of vaccines and confirmed that physicians are on the front lines to suggest and recommend these vaccinations, especially in the current pandemic context, which may be used to promote other vaccines.


2020 ◽  
Vol 4 (3) ◽  
pp. 89-110
Author(s):  
URSZULA MARKOWSKA-MANISTA ◽  
DOMINIKA ZAKRZEWSKA-OLĘDZKA

The coronavirus has closed adults and children at home. We communicate by phone or the Internet. Life has moved online, it has lost its rhythm within traditional systems of school and work. As a result of the COVID-19 pandemic spreading around the globe, many states have introduced numerous limitations in adults’ and children’s social functioning. The majority of education and care institutions have been closed, while companies and institutions whose type of activity allows to do so have decided to transform their work patterns into remote work. This new situation has particularly affected children, who, for their own and their families’ safety, have been cut off from the possibility to participate in activities and events that used to be part of their daily lives. In order to look at this situation and analyse the situation of families with children, an online survey questionnaire was conducted among 158 adults that aimed to collect data from below (from the perspective of reflexive adults looking after children in the situation of spatial-mobile limitations). In the article, we discuss changes in parents’ and children’s lives and analyse the social background of the areas discussed.


Author(s):  
Barlo Hillen ◽  
Perikles Simon ◽  
Sebastian Schlotter ◽  
Oliver Nitsche ◽  
Viola Bähner ◽  
...  

Abstract Background Regular participation in exercise is important for people with cystic fibrosis (CF). Therefore, we implemented a personalized, web-based exercise intervention over the course of one year for people with CF. The aims were to investigate the feasibility of the intervention and to evaluate changes in exercise participation, lung function, and exercise capacity. Methods In total, 11/17 participants [aged 12–52 years; FEV1%pred. 72.3 (SD: 17.3)] were included in the final data analysis. Every week, the participants received an individual training recommendation at the start and uploaded their training report on our website at the end of each week. The number of training minutes and sessions performed were analyzed over 13 four-week training sections. The participation in exercise (physical activity questionnaire), lung function and exercise capacity were assessed at baseline (T0), after 12 weeks (T1) and after 52 weeks (T2). Results A training duration of 178 min (SD: 75.5) and 3.3 (SD: 0.89) training sessions could be achieved weekly. In the first four-week training section, the participants performed 137.31 (SD: 95.7) minutes of training, with an increase of 42% in the third training section (195.01, SD: 134.99). Minutes of training reported on the questionnaire increased by 39.7% from T0 (179.38 min, SD: 120.9) to T1 (250.63 min, SD: 124.1) but decreased at T2 (166.88, SD: 155.4). There were slight decreases in lung function (FEV1 − 3.9%pred.; FVC − 1.9%pred.) and slight increases in exercise capacity (VO2peak + 1.5 ml/min/kg; six-minute-walk-test-distance + 26 m). Noticeably, five participants experienced deteriorations in their FEV1 of more than 5% but simultaneously experienced improvements in the parameters of exercise capacity of more than 5% throughout the year. Conclusions The web-based concept was feasible for the participants over the course of a year and supported exercise participation. The improvement in exercise capacity due to increased exercise participation over a prolonged period of time, despite a decrease in lung function, should be further investigated. Finally, if integrated into usual care, this approach could facilitate the prescription of regular personalized exercise and promote exercise participation in the daily lives of people with CF.


2020 ◽  
Vol 29 (3) ◽  
pp. 339-343
Author(s):  
Marco Luigetti ◽  
Annalisa Tortora ◽  
Angela Romano ◽  
Andrea Di Paolantonio ◽  
Valeria Guglielmino ◽  
...  

Background and Aims: Hereditary transthyretin (ATTRv) amyloidosis represents a diagnostic challenge considering the great variability in clinical presentation and multiorgan involvement. In this study we report the prevalence of gastrointestinal (GI) involvement of patients with hereditary ATTRv amyloidosis from one single center of Italy, a non-endemic area. Methods: We retrospectively analyzed a cohort of 39 patients with hereditary ATTRv amyloidosis followed at the Neurology Unit of Fondazione Policlinico Universitario A. Gemelli IRCCS in Rome, Italy. All patients had a documented mutation in the gene encoding the thansthyretin. Neurological, cardiological and gastrointestinal manifestations were systematically collected at every monitoring visit. Results: 82% reported at least one GI symptom. Unintentional weight loss was the most frequently reported. Lower GI symptoms were more frequent than upper GI symptoms (66.7% vs. 35.9%, p=0.0122). The first GI symptom was always reported within 5 years since disease onset. Gastrointestinal symptoms were almost always present in patients with Val30Met mutation (93.8%, 15/16), and in more than half of the cases with Phe64Leu mutation (66.7%, 8/12). All cases with a non-Val30Met mutation disclosed almost all GI symptoms within 5 years since disease onset; conversely, patients with Val30Met mutation continued to develop further GI manifestations during the disease course. Conclusions: Prevalence of GI symptoms in our cohort was 82%, resulting in a higher prevalence than reported in the THAOS registry. Gastroenterologists, therefore, play an important role for the management of the disease, and their expertise should be valued for an effective multidisciplinary approach to this condition.


2020 ◽  
Author(s):  
Nicola Hurley ◽  
Bróna Kehoe ◽  
Noel McCaffrey ◽  
Karen Redmond ◽  
Lydia Cullen ◽  
...  

Abstract Background: Physical activity (PA) is a well-established therapeutic modality for the maintenance and improvement of long-term health in cystic fibrosis (CF). Healthcare professionals (HCP) are considered credible and well-placed messengers for the delivery of PA advice. Limited research exists investigating the extent of PA prescription within CF care. This study aimed to identify Irish HCP i) knowledge and practice of, and ii) motivators and barriers to PA prescription, and iii) proposed strategies to optimize PA promotion and prescription in CF populations.Methods: HCP from six designated CF centres in Ireland and members of the national physiotherapy CF clinical interest group were invited to participate. Following an expression of interest, each HCP (n=81) received an email containing the plain language statement and link to the online survey. 48 HCP (physiotherapists n=24, other n=24) completed the 30-item investigator-developed survey, which included multiple choice single answer, matrix style and open-ended questions.Results: Most HCP (81%) acknowledged that discussing PA with CF patients was part of their professional role. Almost all physiotherapists (95%) reported having sufficient knowledge regarding PA prescription, compared to 17% of other HCP. All physiotherapists reported discussing PA at every patient interaction, with 81% employing the current consensus guidelines, compared to 33% and 5% of other HCP, respectively. Among the most common barriers reported by HCP to recommending PA to their CF patients were; lack of motivation and compliance among patients to adhere to PA advice, limited availability of PA programmes to refer their patients to, limited time with patients during clinic visits and a lack of knowledge regarding PA prescription for CF care. Three-quarters of HCP reported a need to improve PA services for CF patients in Ireland.Conclusion: As people with CF are living longer, it is imperative that HCP are expanding their scope of practice to include discussions around PA at every patient visit. Formal educational opportunities in the form of continuing professional development programmes are warranted for CF HCP to optimize long-term patient management and outcomes. There is also a need to develop patient-centered and evidence-based PA programmes underpinned by theories of behaviour change to enhance motivation and compliance among CF patients.


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