scholarly journals Quality and Readability of Online Information for Patients with Pancreatic Cysts: A Cross-sectional Study of Websites (Preprint)

2020 ◽  
Author(s):  
Sven Peter Oman ◽  
Himesh Zaver ◽  
Mark Waddle ◽  
Juan E. Corral

BACKGROUND Pancreatic cysts are a complex medical problem with several treatment options. Patients are using online health information to understand their condition and to guide treatment choices. OBJECTIVE The goal of this study was to describe the quality and readability of publically available online information on pancreatic cysts and to compare these across website affiliation. METHODS A Google© search for “pancreatic cysts” was performed and the first 30 websites were evaluated. Website affiliation was classified as academic, media, non-profit, government, or not disclosed. Information describing cancer risk was recorded. The DISCERN instrument measured the quality of content regarding treatment choices. Four standardized tests were used to measure readability. RESULTS Twenty-one websites were included. The majority of websites (95.2%) described the cancer risk associated with pancreatic cysts. Nearly half of the websites were written by an academic hospital or organization. The average DISCERN score for all websites was 40.4 (range 26-65.5; maximum 80). Websites received low scores due to lack of references, failure to describe the risks of treatment, and/or to explain how treatment choices affect quality of life. The average readability score was 14.8 (range 5.76-23.9; maximum 19+) indicating a college reading level. There were no significant differences across website affiliation groups. CONCLUSIONS Online information for patients with pancreatic cysts is moderate quality and written above a middle school reading level. Gastroenterological, cancer treatment organizations, and physicians should advocate for improving available information by providing cancer risk stratification, treatment impact on quality of life, references, and better readability. CLINICALTRIAL n/a


2021 ◽  
pp. 1-10
Author(s):  
Stephanie Paula Elisabeth Guillery ◽  
Rainer Hellweg ◽  
Golo Kronenberg ◽  
Ulrich Bohr ◽  
Hagen Kunte ◽  
...  

<b><i>Background:</i></b> Research on quality of life (QoL) of chronically ill patients provides an opportunity to evaluate the efficacy of long-term treatments. Although it is established that opioid replacement therapy is an effective treatment for opioid-dependent patients, there is little knowledge about physical and psychological functioning of QoL for different treatment options. <b><i>Objectives:</i></b> Altogether, 248 opioid-dependent patients receiving substitution treatment with either methadone/levomethadone (<i>n</i> = 126), diamorphine (<i>n</i> = 85), or buprenorphine (<i>n</i> = 37) were recruited in 6 German therapy centers. <b><i>Methods:</i></b> Sociodemographic data were collected. QoL – physical and psychological functioning – for different substitutes was assessed using the <i>Profile of the Quality of Life in the Chronically Ill</i> (PLC) questionnaire. <b><i>Results:</i></b> Patient groups were similar regarding age and duration of opioid dependence. Employment rate was significantly higher (<i>p</i> &#x3c; 0.005, φ = 0.22) in the buprenorphine group (46%) compared to methadone (18%). Dosage adjustments were more frequent (<i>p</i> &#x3c; 0.001, φ = 0.29) in diamorphine (55%) than in methadone (30%) or buprenorphine (19%) patients. Buprenorphine and diamorphine patients rated their physical functioning substantially higher than methadone patients (<i>p</i> &#x3c; 0.001, η<sup>2</sup> = 0.141). Diamorphine patients reported a higher psychological functioning (<i>p</i> &#x3c; 0.001, η<sup>2</sup> = 0.078) and overall life improvement (<i>p</i> &#x3c; 0.001, η<sup>2</sup> = 0.060) compared to methadone, but not compared to buprenorphine patients (both <i>p</i> &#x3e; 0.25). <b><i>Conclusion:</i></b> Measurement of important QoL aspects indicates significant differences for physical and psychological functioning in patients receiving the substitutes methadone/levomethadone, diamorphine, and buprenorphine. This could be relevant for the differential therapy of opioid addiction.



2008 ◽  
Vol 139 (2_suppl) ◽  
pp. P50-P50
Author(s):  
Richard Turley ◽  
Seth M Cohen

Objective 1) Evaluate the prevalence of and quality of life impact of voice and swallowing problems in the elderly. 2) Determine treatment trends and barriers to treatment. Methods Cross-sectional study of independent living residents in 2 retirement communities. Main outcome measures include prevalence of dysphonia and dysphagia, Voice Related Quality of Life (VRQOL), 7-point Likert scale of dysphagia severity, Center for Epidemiologic Studies Depression (CES-D) scale, and barriers to treatment. Relationship between continuous variables were analyzed with Spearman correlation and between categorical and continuous variables with a t-test. Results 248 residents responded, with a mean age of 82.4 years. 19.8% had dysphonia, 13.7% dysphagia, and 6% both. Respondents with more severe swallowing difficulty had greater impairment on the VRQOL (p = 0.04, Spearman correlation = −0.4). Respondents with both dysphonia and dysphagia had greater depression scores than those with neither symptom (mean CES-D score 15.5 versus 9.9, p = 0.008, t-test). While 75% of respondents with dysphonia were interested in treatment, only 20.4% and 2.1% had sought treatment for dysphonia and dysphagia, respectively. Being unaware of treatment options, and viewing voice and swallowing trouble as a normal part of aging, were the two most common reasons for not seeking treatment. Conclusions Voice and swallowing problems are common in the elderly but they are not realizing potential treatment benefits. Improved health care services for voice and swallowing problems in the elderly are essential.



2011 ◽  
Vol 93 (8) ◽  
pp. 591-595 ◽  
Author(s):  
JS Williamson ◽  
D Ingrams ◽  
H Jones

INTRODUCTION Laryngeal cancer treatment inherently affects life's most basic functions and significantly affects quality of life (QOL). We aimed to identify which aspects of QOL and which patients are most affected by the various treatment options. METHODS The University of Washington Quality of Life (UW-QOL) questionnaire was administered to all patients with laryngeal cancer treated at a single institution over a seven-year period (2003–2010). RESULTS In total, 41 patients responded. All had been treated for squamous cell carcinoma of the larynx. Questionnaires were completed at a median of 18.5 months after treatment. The overall quality of life was 81.1/100 as assessed by the UW-QOL scale, with only 4.9% reporting ‘poor’ or worse QOL. Neither patient age nor time after treatment significantly affected any aspect of QOL. Patients undergoing primary radiotherapy reported the best QOL. Those undergoing chemoradiotherapy or combined surgical treatment and chemoradiotherapy reported the worst QOL, particularly in terms of social eating, taste and saliva production. Patients with a T stage ≥2 and those with nodal metastases reported a significantly worse QOL. CONCLUSIONS Overall, QOL in our patients was good. This study highlights the aspects of QOL most affected by various treatments for laryngeal cancer and identifies areas in which therapeutic intervention may be focused. It also provides information to guide clinicians when assisting patients to make informed decisions regarding treatment of their head and neck cancer.



2020 ◽  
Vol 38 (6_suppl) ◽  
pp. 14-14 ◽  
Author(s):  
Hannah L. Rush ◽  
Adrian David Cook ◽  
Christopher D. Brawley ◽  
Laura Murphy ◽  
Archie Macnair ◽  
...  

14 Background: Docetaxel (DOC) and abiraterone (ABI) both improve overall survival (OS) in men with locally advanced or metastatic hormone-sensitive prostate cancer (HSPC) but no head to head trials compare the 2 agents. STAMPEDE, a multi-arm multi-stage platform trial, recruited patients (pts) to treatments including DOC or ABI between Nov-11 and Mar-13. There was no evidence OS differed between DOC or ABI, thus quality of life (QOL) may increasingly inform treatment options. Methods: QOL scores were analysed in pts contemporaneously randomised to receive DOC or ABI, in addition to standard of care treatment. Self-assessment QOL questionnaires EORTC QLQ C30 and PR25 were completed during treatment and follow-up. These analyses focus on average global QOL over the first 2 years after randomisation, using repeated measures analysis, plus cross-sectional analyses at 3, 6, 12 and 24 months. A score difference of ≥4 points was pre-defined as clinically meaningful. Results: 173 men randomised to DOC and 342 men randomised to ABI participated in the QOL sub-study and contributed to this analysis. Baseline characteristics and proportion of missing data were similar between groups. Baseline global QOL scores were similar (mean (sd): DOC 77.8 (20) and ABI 78.0 (19.3)). Average global QOL over 2 years was higher in pts randomised to ABI than DOC, although the difference was statistically significant it did not meet the pre-defined clinical parameter (+3.9, 95%CI 0.6 to 7.1, p=0.021). Cross-sectional analyses showed clinically meaningful superior QOL in the ABI group at 3 and 6 months (+6.6, 95%CI 2.6 to 10.7, p=0.001; +8.0, 95%CI 3.6 to 12.3, p<0.001), but not at 1 or 2 years (+1.3, 95%CI -3.0 to 5.6, p=0.545; +4.5, 95%CI -0.25 to 9.2, p=0.063). An exploratory analysis indicated average QOL for pts with metastatic disease (n=207) was better in the ABI group (+4.44, 95%CI 0.2 to 8.6, p=0.036). Conclusion: Global QOL was significantly higher in the first 2 years of treatment for the ABI group compared to the DOC group, though did not meet the pre-defined clinically meaningful threshold. The majority of difference was seen in the first year of treatment. This should be considered when discussing treatment options with pts. Clinical trial information: NCT00268476.



2011 ◽  
Vol 67 (2) ◽  
Author(s):  
L. Skaal ◽  
M.K. Mashola

Background: Urinary incontinence (UI) is a common problem among females and has been associated with significant decreased quality of  life. Few  women  seek  help  for  this  condition  with  only  a  few  who consult physiotherapy treatment.Purpose: To determine the prevalence of urinary incontinence and its impact on quality of life among the university women in South Africa.Method:  A  quantitative  cross-sectional  study design  with  145  women  ran-domly selected from the university. A questionnaire was used to determine UI Diagnosis; Impact on Qol and treatment seeking tendencies. BMI was meas-ured objectively. ethical clearance was obtained from University. Data was analysed using SPSS 17.0Results:  Forty  six(32%)  women  reported  to  having  UI.  Risk  factors  associated  with  UI  included  age,  race,  and  obesity. UI had a significant negative impact on quality of life and only 4.4% of participants with UI consulted physio-therapy for this condition.Conclusion: There is a high prevalence of UI among the women at this university with a significant impact on quality of life.The role of Physiotherapy in management of UI has been demonstrated and there is therefore a need to empower women with non-invasive treatment options, like physiotherapy.



2021 ◽  
Vol 42 (2) ◽  
pp. 144-153
Author(s):  
Potchara Kanammit ◽  
◽  
Threechada Boonchan ◽  
Pokket Sirisreetreerux ◽  
Wit Viseshsindh ◽  
...  

Objective: To investigate the impact and the incidence of nocturia on the quality of life of patients in Ramathibodi Hospital. Materials and Methods: This study was a hospital-based cross-sectional study to measure the QoL of nocturia patients using a Nocturia Quality-of-Life questionnaire (N-QoL). Cronbach’s alpha coefficient was used to explore internal consistency. Pearson’s correlation coefficient (r) was used to determine the strength of the relationship between the scores for each item. Uni- and Multivariate analyses were used to explore the significant parameters. Results: One hundred and fifty-five nocturia patient were included in the study analysis. Most of the questionnaire respondents were male (80.65%) and the vast majority had at least 1 underlying disease requiring long-term follow-up by a physician (86.45%) with a median urination of 3 times per night and a 3 hour median first urination after retiring to bed. From our study questionnaire, most patients responded that they had moderate to good quality of life with a minor inconvenience from nocturia, requiring them to nap during the day on some days. An increasing frequency of urination per night and a first urination of less than 2 hours after retiring is significantly related to low levels of energy the next day, sleep deprivation, worry over treatment options, overall inconvenience and a reduction in quality of life. Conclusion: Our study demonstrated nocturia patients experience a significant reduction in quality of life, and a decrease in quality of sleep. The incidence of urination in the night and the timing of the first urination after bed had more impact on overall quality of life.



2007 ◽  
Vol 18 (10) ◽  
pp. 700-704 ◽  
Author(s):  
Lorraine Sherr ◽  
Fiona Lampe ◽  
Sally Norwood ◽  
Heather Leake-Date ◽  
Martin Fisher ◽  
...  

HIV treatment and management is constantly evolving. This is as a result of more treatment options coming on stream, tolerance changes and progress in treatment management. HIV infection today, in resource-rich countries and in the presence of combination therapies, is experienced as lifelong treatment punctuated by adjustments to antiretroviral therapy (ART) regimens. People who are diagnosed as HIV positive face a number of challenges and changes around the decision to commence treatment, responses to treatment and changes in treatment regimens. This study was set up to examine the experience of switching treatments and the impact of such switches on psychological parameters. The method used was a cross-sectional questionnaire study. A group of 779 HIV-positive clinic attendees at four clinics in London and South East England participated in the study (86% response rate). They provided detail of their treatment switching experiences as well as demographic details, risk and optimism evaluations, quality of life, symptom burden, adherence and disclosure information. The sample ( n=779) comprised 183 (24%) females, 76 (10%) heterosexual males and 497 gay males (66%). Self-reported ethnicity was 67% white, 25% black, 3% Asian and 5% mixed/other ethnicity. One hundred and fifty-five (21%) were ART-naïve and 624 (79%) were ART experienced; 161 (22%) were receiving their first regimen, 135 (18%) had experienced one regimen switch, 196 (26%) had multiple switches and 99 (13.3%) had stopped treatment. Treatment naïve, non-switchers and single switchers generally reported lower symptom burden and higher quality of life. Multiple switchers reported higher physical symptom burden and higher global symptom distress scores. Those who had stopped treatment had significantly lower quality-of-life scores than all other groups. Suicidal ideation was high across the groups and nearly a fifth of all respondents had not disclosed their HIV status to anyone. Reported adherence was suboptimal – 79% of subjects were at least 95% adherent on self-report measures of doses taken over the preceding week. In conclusion, nearly half this clinic sample will have switched treatments. A holistic approach is needed to understand the psychological effects of such switches if lifelong treatment is to be maintained and those on antiretroviral treatment are to attain good quality of life and minimize symptom burden.



2018 ◽  
Vol 6 (9) ◽  
pp. 1316-1322 ◽  
Author(s):  
Mirjam CM Ende-van Loon ◽  
Wilda D Rosmolen ◽  
Saskia Houterman ◽  
Erik J Schoon ◽  
Wouter L Curvers


2021 ◽  
Vol 12 ◽  
Author(s):  
Marina Boziki ◽  
Charis Styliadis ◽  
Christos Bakirtzis ◽  
Eleni Grigoriadou ◽  
Aggeliki-Styliani Sintila ◽  
...  

Background: In the context of the coronavirus disease 2019 (COVID-19) pandemic, the constant needs of people with multiple sclerosis (PwMS) and their caregivers were urgently highlighted.Aim: The present study aims to capture the effects of the COVID-19 pandemic in several aspects of the quality of life of PwMS, in perception and behavior to COVID-19 and multiple sclerosis (MS), as well as concerning healthcare, working conditions, and the willingness toward COVID-19 vaccination.Methods: This study is an initiative of the Hellenic Academy of Neuroimmunology (HEL.A.NI.) and it has been included in the MS Data Alliance (MSDA) Catalog, which can be accessed after creating an account on https://msda.emif-catalogue.eu/login. Two online questionnaires were administered: (i) impact of the COVID-19 pandemic on the quality of life, behavior, and healthcare of PwMS (Questionnaire A) and (ii) vaccination against COVID-19 (Questionnaire B). People with MS were invited to participate by the Hellenic Federation of Persons with Multiple Sclerosis (HFoPwMS).Results: Three-hundred-ninety PwMS responded to Questionnaire A, whereas 176 PwMS provided answers for Questionnaire B. Older age, longer disease duration, and higher MS-related disability were associated with the increased perceived sensitivity toward severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection, as well as the increased perceived severity of COVID-19 upon potential infection. A significant proportion of PwMS experienced restricted access to MS-related health professionals, disease-modifying therapy (DMT) prescription, and/or to MS-related laboratory examination due to the pandemic. Subgroups of PwMS reported exacerbated symptoms (i.e., chronic MS-related symptoms, fatigue and/or worsening of pre-existing fatigue, and sexual dysfunction and or/worsening of pre-existing sexual dysfunction). Overall, the majority of the participants reported either a strong willingness to get vaccinated against COVID-19 or a likeliness to undergo vaccination. Being aware of the HEL.A.NI. recommendations regarding COVID-19 vaccination for PwMS were reported to increase the willingness of the participants to receive the vaccine.Conclusions: Our results highlight the necessity of scientific and patient organizations in taking joint action to increase awareness on health-related issues during the pandemic and to provide accurate and up-to-date guidance for PwMS. Online information and communications technology (ICT) tools for polling public belief and behavior may prove valuable as means of retaining active routes of communication between stakeholders.



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