Patient Experience: Living with Cystinuria During the COVID-19 Pandemic

Background and ObjectivesCystinuria is a rare genetic cause of recurrent urolithiasis and requires multimodal treatment, and stringent follow up. We wanted to evaluate the fears and concerns of patients with cystinuria during the COVID-19 pandemic. Materials and MethodsAn online survey using Google Forms was emailed to 165 patients with cystinuria who are maintained on a prospective database and had previously consented for email correspondence. ResultsFifty-five responses were received following a single invitation, 23 were men and 32 women with a median age of 43 (range: 18-72) years. Thirty-nine (70.9%) out of 55 were isolating during the COVID-19 pandemic although only 7(12.7%) were given specific advice to shield officially. Six (10.9%) reported having COVID or COVID like symptoms, but none reported having a positive test. Only 9 (16.4%) had been able to work as usual. In comparison, 20 (36.4%) were able to work from home. Ten out of 19 patients (52.6%) on chelating medication described difficulty in access to their medicine, either due to a shortage at the pharmacy or prescription access. Reassuringly 34 (61.8%) patients described no issues with access to any of their cystinuria medications.Twenty-two patients (40%) reported experiencing pain or passing a stone during the COVID-19 pandemic, while 30 (54.5%) reported no problems. Of patients who felt it applicable, 16/31 (51.6%) were worried about attending the Emergency Department during this time. Of patients who had scheduled hospital appointments during this time, 26/44 (59.1%) had experienced cancellations. The majority of the respondents (37 (67.3%)) did not state any difference in the ability to stay hydrated during the lockdown.Twenty-eight (50.9%) were more anxious about their overall health during the pandemic, and 20 (36.4%) had expressed more concern about their kidney stones. ConclusionThis personal fully patient-reported snapshot of the impact of the COVID-19 pandemic on a population of cystine stone formers in the United Kingdom has highlighted additional challenges for patients with a rare disease. The lockdown measures enforced have had a varying effect on patients’ ability to work as normal, access medications, health anxieties, in addition to cancellations of the planned hospital appointments and Emergency Department attendance, which will impact on their future health and pose evolving challenges in delivery of their future care.

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O22 Evaluating the impact of COVID-19 on patient access to rheumatology services, medication and future care: a nationwide study of more than 2,000 patients

Rheumatology ◽

10.1093/rheumatology/keab246.021 ◽

2021 ◽

Vol 60 (Supplement_1) ◽

Author(s):

Chris Wincup ◽

Raj Amarnani ◽

Ian Giles

Keyword(s):

Drug Monitoring ◽

Online Survey ◽

British Society ◽

National Study ◽

Telephone Consultation ◽

Patient Reported ◽

Future Care ◽

The Uk ◽

The Impact

Abstract Background/Aims COVID-19 has had significant impacts upon the delivery of rheumatology care in the UK. To date, there is little data specifically addressing how care has been disrupted and the impact upon patient attitudes and beliefs. Herein, we describe the results of a national study investigating how COVID-19 has; (1) reduced access to services; (2) altered treatment and drug monitoring; (3) impacted on clinic follow-up; (4) changed patient beliefs regarding ongoing/future care. Methods We conducted an online survey of patients attending rheumatology clinics in the UK. Questions were developed by clinicians with input from patient charities and four expert patients. The survey was hosted online between 8 September and 8 October 2020. Results In total, 2,054 patients completed the survey and the average number of rheumatic conditions each patient reported was 1.98±1.38 with the most common being; rheumatoid arthritis (48%), lupus (20%), Sjogren’s syndrome (19%), fibromyalgia (15%) and vasculitis (8%). More than half (57%) were told to shield, whilst 10% decided to shield of their own accord. Compared with before the pandemic, 57% felt it was difficult/very difficult to contact their rheumatologist. Regarding treatment, 15% reported difficulty obtaining their usual medication. Less than half (45%) of patients continued medication as previously and had no problem accessing it, although 21% said their usual drug monitoring had been discontinued. Overall, 3% stopped their treatment of their own accord. In all, 26% said their appointments in rheumatology clinics had been cancelled and they did not know when they would be seen again (4% reported no change in their outpatient follow-up). Prior to the pandemic, 13% of patients had received a telephone consultation, however, since the pandemic 60% had received one. Just 19% felt it was easy to be honest with their clinician via telephone. Only 33% were satisfied with the current level of care, 43% reported their rheumatology care was worse than pre-pandemic and 38% of patients felt they needed to see their rheumatologist but could not get an appointment. Over half (57%) of patients expressed worries about their future care. If offered an appointment in the next few months 66% said they would prefer it be face-to-face. Conclusion To our knowledge, this study is the largest survey of patient experiences of the COVID-19 pandemic under rheumatological care anywhere in the world. We found more than half of patients were told to shield and one-in-ten decided to shield without being directly told to do so. Less than half of patients maintained relatively good access to their usual medication without necessary monitoring in many cases. In particular, patients express high levels of concern about their future care. These high levels of disruption indicate the importance of maintaining routine rheumatology services during the ongoing pandemic. Disclosure C. Wincup: Grants/research support; CW has received research funding from Versus Arthritis, LUPUS UK and the British Society for Rheumatology. R. Amarnani: None. I. Giles: None.

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The Impact of the COVID-19 Pandemic on the Working Conditions, Employment, Career Development and Well-Being of Refugee Researchers

Societies ◽

10.3390/soc11030071 ◽

2021 ◽

Vol 11 (3) ◽

pp. 71

Author(s):

Ourania Tzoraki ◽

Svetlana Dimitrova ◽

Marin Barzakov ◽

Saad Yaseen ◽

Vasilis Gavalas ◽

...

Keyword(s):

Online Survey ◽

Negative Impact ◽

Well Being ◽

Appropriate Technology ◽

Public Authorities ◽

Policy Makers ◽

Home Setting ◽

The Public ◽

Work From Home ◽

The Impact

The ongoing ‘refugee crisis’ of the past years has led to the migration of refugee researchers (RRs) to European countries. Due to the COVID-19 pandemic, RRs often had to work from home and/or to continue their social, cultural and economic integration process under new conditions. An online survey carried out to explore the impact of the pandemic on the refugee researchers showed that RRs found it difficult to adapt their everyday working life to the ‘home’ setting. The majority have had neither a suitable work environment at home nor the appropriate technology. Although they stated that they are rather pleased with the measures taken by the public authorities, they expressed concern about their vulnerability due to their precarious contracts and the bureaucratic asylum procedures, as the pandemic has had a negative impact on these major issues. The majority of RRs working in academia seem not to have been affected at all as far as their income is concerned, while the majority of those employed in other sectors became unemployed during the pandemic (58%). Recommendations are provided to the public authorities and policy makers to assist RRs to mitigate the consequences of the pandemic on their life.

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The Work-Life Balancing Act

International Journal of Human Capital and Information Technology Professionals ◽

10.4018/ijhcitp.2021070101 ◽

2021 ◽

Vol 12 (3) ◽

pp. 1-20

Author(s):

Dhruva Pathak ◽

Vijayakumar Bharathi S. ◽

Padma Mala E.

Keyword(s):

Online Survey ◽

Healthy Lifestyle ◽

Work Productivity ◽

Well Being ◽

Personal Life ◽

Future Research ◽

New Ways Of Working ◽

Professional Attitude ◽

Work From Home ◽

The Impact

The study investigated the impact of mandatory work from home due COVID-19 on personal and professional lives of people with different demographics. Statistical analysis of an online survey data (N=237) reveals that the impact on personal life dimensions—healthy lifestyle, family bonding, and physical stress—does not differ across people within different demographics. However, impact on emotional well-being is sensitive to gender and industry groups. Family size is also an important demographic factor impacted upon personal life dimensions. Professional dimensions related to work productivity and adopting new ways of working does not differ across demographics except for occupational role. Dimensions related to new skill development and change in professional attitude does differ across occupational roles. The study concludes by stating future research directions for mandatory work from home situation, and prescription to post-COVID-19 strategies for organizations.

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Impact of stereotactic body radiation therapy on patient-reported quality of life in patients with unresectable or recurrent pancreatic cancer.

Journal of Clinical Oncology ◽

10.1200/jco.2016.34.4_suppl.413 ◽

2016 ◽

Vol 34 (4_suppl) ◽

pp. 413-413

Author(s):

Lauren M. Rosati ◽

Zhi Cheng ◽

Scott P. Robertson ◽

Megan N. Kummerlowe ◽

Amy Hacker-Prietz ◽

...

Keyword(s):

Quality Of Life ◽

Pancreatic Cancer ◽

Radiation Therapy ◽

Stereotactic Body Radiation Therapy ◽

Locally Advanced ◽

Future Health ◽

Stereotactic Body Radiation ◽

Patient Reported ◽

The Impact

413 Background: The impact of fractionated stereotactic body radiation therapy (SBRT) on patient-reported quality of life (QOL) and physician-reported toxicity in patients with recurrent or locally advanced pancreatic cancer (PCA) was prospectively evaluated. Methods: Forty-two PCA patients were treated with 25-33 Gy using SBRT in 5 fractions on a single-institution study. Both patient- and physician-reported outcomes were evaluated prior to SBRT and 4-6 weeks post-SBRT. Eight outcomes were consistently evaluated among both groups—performance status, fatigue, pain, anorexia, nausea, vomiting, constipation, and diarrhea. Patient-reported QOL metrics were assessed using a 4-point Likert scale on the EORTC QLQ-C30 and QLQ-PAN26, while physician-reported toxicities were graded using the NCI CTCAE version 4.0. Comparisons between those with paired patient- and physician-reported outcomes collected prior to and 4-6 weeks after SBRT were made using the Wilcoxon signed-rank test. Results: Of the 42 patients currently enrolled onto the study, 29 had both patient- and physician-reported outcomes collected prior to and 4-6 weeks after SBRT. Fifty-five percent were female and 83% were Caucasian. The median age at diagnosis was 65.6 years (range, 40.8-86.6). There was no significant impairment of any of the 8 physician-reported toxicities, nor were significant changes observed in patient-reported overall health (p = 0.66) or QOL (p = 0.18) scores following SBRT. Patients felt less worried about their future health (mean change [mD] = -0.45, p = 0.02), and an improvement in feeling less attractive as a result of disease and treatment reached borderline significance (mD= 0.31, p = 0.09). However, patients felt limited in planning activities in advance (mD= 0.45, p = 0.02) and were more constipated (mD= 0.38, p = 0.01) 4-6 weeks post-SBRT. Conclusions: Although the numbers are small, patients with unresectable or locally recurrent PCA do not appear to suffer any detriment of overall health or QOL after receiving a five-day course of SBRT. Moreover, this regimen may lead to a more optimistic point of view on future health and/or level of physical attraction. Clinical trial information: NCT01781728.

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Understanding the impact of a new Pharmacy Sore throat Test and Treat service on patient experience: A quantitative study

10.21203/rs.2.24218/v1 ◽

2020 ◽

Author(s):

Efi Mantzourani ◽

Rebecca Cannings-John ◽

Andrew Evans ◽

Haroon Ahmed ◽

Alan Meudell ◽

...

Keyword(s):

Sore Throat ◽

Patient Experience ◽

Point Of Care ◽

Free Text ◽

Health Seeking Behaviour ◽

Health Seeking ◽

Future Health ◽

Test And Treat ◽

Patient Reported ◽

The Impact

Abstract Background : A pilot of the first NHS funded Sore Throat Test and Treat (STTT) service in the United Kingdom began in selected community pharmacies in Wales in November 2018. The aim of this research was to explore whether a pharmacist delivering consultation for sore throat that included clinical scoring and point-of-care testing was acceptable to patients, and how this might influence future health-seeking behaviour for subsequent sore-throats. Methods : Quantitative research was employed, with a non-experimental design using a survey research tool including a mix of closed and open questions, developed in collaboration with members of the public. The patient experience survey was distributed to all patients who had completed a consultation between November 2018 and May 2019. Data from completed surveys were entered in Jisc Online Surveys® and exported to Excel® for descriptive statistics. Free-text comments were analysed using content and inductive thematic analysis. Results : A total of 510 surveys were received from 2,839 sore throat consultations (response rate 18%). Overall, 501 patients (98%) were satisfied with the service. Patients’ confidence in managing their condition and service satisfaction was not dependent on having been supplied antibiotics. A total of 343 patients (67%) requested a GP appointment but were offered to a consultation in the pharmacy. After the service, 504 patients (99%) stated that they would return to the pharmacy for subsequent sore throat symptoms. Inductive analysis of free-text comments (n=242) revealed 3 themes: convenience and accessibility; professionalism of pharmacy team; and perceived value of the service. Conclusions : Results confirmed high levels of patient satisfaction with the new service, the way it was delivered and the increased choice of options for sore throat symptom management it offered. Whilst this research can only discuss patients’ reported future behaviour, the patient-reported stated intentions signify a potential shift in health-seeking behaviour towards a pharmacist-led service. This has important implications in supporting the long term plan of the governments in Wales and England to redirect management of uncomplicated conditions from GPs to pharmacies.

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Stereotactic body radiation therapy and patient-reported quality of life prospectively evaluated in patients with unresectable or recurrent pancreatic cancer.

Journal of Clinical Oncology ◽

10.1200/jco.2015.33.29_suppl.92 ◽

2015 ◽

Vol 33 (29_suppl) ◽

pp. 92-92

Author(s):

Lauren M. Rosati ◽

Zhi Cheng ◽

Scott P. Robertson ◽

Megan N. Kummerlowe ◽

Amy Hacker-Prietz ◽

...

Keyword(s):

Quality Of Life ◽

Pancreatic Cancer ◽

Radiation Therapy ◽

Stereotactic Body Radiation Therapy ◽

Locally Advanced ◽

Future Health ◽

Stereotactic Body Radiation ◽

Patient Reported ◽

The Impact

92 Background: The impact of fractionated stereotactic body radiation therapy (SBRT) on patient-reported quality of life (QOL) and physician-reported toxicity in patients with recurrent or locally advanced pancreatic cancer (PCA) was prospectively evaluated. Methods: Forty-two PCA patients were treated with 25-33 Gy using SBRT in 5 fractions on a single-institution study. Both patient- and physician-reported outcomes were evaluated prior to SBRT and 4-6 weeks post-SBRT. Eight outcomes were consistently evaluated among both groups—performance status, fatigue, pain, anorexia, nausea, vomiting, constipation, and diarrhea. Patient-reported QOL metrics were assessed using a 4-point Likert scale on the EORTC QLQ-C30 and QLQ-PAN26, while physician-reported toxicities were graded using the NCI CTCAE version 4.0. Comparisons between those with paired patient- and physician-reported outcomes collected prior to and 4-6 weeks after SBRT were made using the Wilcoxon signed-rank test. Results: Of the 42 patients currently enrolled onto the study, 29 had both patient- and physician-reported outcomes collected prior to and 4-6 weeks after SBRT. Fifty-five percent were female and 83% were Caucasian. The median age at diagnosis was 65.6 years (range, 40.8-86.6). There was no significant impairment of any of the 8 physician-reported toxicities, nor were significant changes observed in patient-reported overall health (p = 0.66) or QOL (p = 0.18) scores following SBRT. Patients felt less worried about their future health (mean change [mD] = -0.45, p = 0.02), and an improvement in feeling less attractive as a result of disease and treatment reached borderline significance (mD= 0.31, p = 0.09). However, patients felt limited in planning activities in advance (mD= 0.45, p = 0.02) and were more constipated (mD= 0.38, p = 0.01) 4-6 weeks post-SBRT. Conclusions: Although the numbers are small, patients with unresectable or locally recurrent PCA do not appear to suffer any detriment of overall health or QOL after receiving a five-day course of SBRT. Moreover, this regimen may lead to a more optimistic point of view on future health and/or level of physical attraction. Clinical trial information: NCT01781728.

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Sharenting, Peer Influence, and Privacy Concerns: A Study on the Instagram-Sharing Behaviors of Parents in the United Kingdom

Social Media + Society ◽

10.1177/2056305120978376 ◽

2020 ◽

Vol 6 (4) ◽

pp. 205630512097837

Author(s):

Giulia Ranzini ◽

Gemma E. Newlands ◽

Christoph Lutz

Keyword(s):

United Kingdom ◽

Social Network ◽

Peer Influence ◽

Self Efficacy ◽

Online Survey ◽

Social Network Sites ◽

Privacy Concerns ◽

The United Kingdom ◽

The Impact ◽

Additional Income

Parental sharing of child-related content on social network sites, termed “sharenting,” is often the target of criticism. Yet, through sharenting, parents can find support systems, a way to stay in touch with relevant others, and even an opportunity for additional income. This study contributes to knowledge on antecedents of sharenting. It explores the impact of parents’ privacy concerns on the sharing of child-related content, as well as on their general Instagram sharing. In this study, we differentiate between general and situational privacy. Moreover, we investigate whether parents’ privacy self-efficacy and the support of their peers influence parental sharing practices. Drawing on a rich body of literature on privacy and information sharing, we discuss the results of an online survey distributed among 320 Instagram users who are parents of children younger than 13 and reside in the United Kingdom. We find that parents’ privacy concerns are uncorrelated to sharenting and only situational concerns marginally correlate to parents’ general sharing. Parents’ reported privacy self-efficacy also did not play a role in parents’ sharing of either personal or children-related content. On the contrary, both Instagram sharing and having a network supportive of parental sharenting positively predict sharenting. Our results indicate that (a) neither situational nor general privacy concerns influence parents’ sharenting behavior, and (b) a parent’s supportive network and frequent sharing habits make frequent sharenting more likely.

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COVID-19: Impact on United Kingdom Horse Owners

Animals ◽

10.3390/ani10101862 ◽

2020 ◽

Vol 10 (10) ◽

pp. 1862

Author(s):

Jane M. Williams ◽

Hayley Randle ◽

David Marlin

Keyword(s):

United Kingdom ◽

Online Survey ◽

Health And Wellbeing ◽

Human Interactions ◽

The United Kingdom ◽

Global Pandemic ◽

Chi Squared ◽

Horse Health ◽

The Impact ◽

Horse Owners

COVID-19 was declared a global pandemic on 11 March 2020; the United Kingdom (UK) implemented quarantine measures shortly afterward, resulting in rapid changes in how owners managed and interacted with their horses. This study provides a rapid analysis of the initial impact of the COVID-19 outbreak on the management of UK leisure and competition horses. A 17 question online survey was distributed via equestrian social media sites to ascertain the impact of COVID-19 on horse and yard management and on human–horse interactions. Frequency analysis combined with Chi-squared and thematic analyses identified the impact of COVID-19 on UK horse owners. Major changes within horse management and horse–human interactions were reported for the majority of horse owners (>65%), regardless of the establishment type or region. Social distancing and visiting restrictions were implemented at most yards, but nearly half were not providing hand sanitization or disinfection protocols for the shared areas/equipment to prevent cross-contamination between users. The financial impact of the pandemic combined with restricted access to veterinary professionals resulted in owners expressing concerns that horse health and welfare may be compromised as a result. Horse owners also felt that the reduced opportunities for horse–human interactions were negatively affecting their mental health and wellbeing.

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Use of Physical Therapy for Low Back Pain by Medicaid Enrollees

Physical Therapy ◽

10.2522/ptj.20150037 ◽

2015 ◽

Vol 95 (12) ◽

pp. 1668-1679 ◽

Cited By ~ 15

Author(s):

Julie M. Fritz ◽

Jaewhan Kim ◽

Anne Thackeray ◽

Josette Dorius

Keyword(s):

Emergency Department ◽

Low Back Pain ◽

Back Pain ◽

Physical Therapy ◽

The United States ◽

Health Care Use ◽

Low Back ◽

Future Health ◽

Patient Reported ◽

Future Health Care

Background Medicaid insures an increasing proportion of adults in the United States. Physical therapy use for low back pain (LBP) in this population has not been described. Objective The study objectives were: (1) to examine physical therapy use by Medicaid enrollees with new LBP consultations and (2) to evaluate associations with future health care use and LBP-related costs. Design The study was designed as a retrospective evaluation of claims data. Methods A total of 2,289 patients with new LBP consultations were identified during 2012 (mean age=39.3 years [SD=11.9]; 68.2% women). The settings in which the patients entered care and comorbid conditions were identified. Data obtained at 1 year after entry were examined, and physical therapy use was categorized with regard to entry setting, early use (within 14 days of entry), or delayed use (>14 days after entry). The 1-year follow-up period was evaluated for use outcomes (imaging, injection, surgery, and emergency department visit) and LBP-related costs. Variables associated with physical therapy use and cost outcomes were evaluated with multivariate models. Results Physical therapy was used by 457 patients (20.0%); 75 (3.3%) entered care in physical therapy, 89 (3.9%) received early physical therapy, and 298 (13.0%) received delayed physical therapy. Physical therapy was more common with chronic pain or obesity comorbidities and less likely with substance use disorders. Entering care in the emergency department decreased the likelihood of physical therapy. Entering care in physical medicine increased the likelihood. Relative to primary care entry, physical therapy entry was associated with lower 1-year costs. Limitations A single state was studied. No patient-reported outcomes were included. Conclusions Physical therapy was used often by Medicaid enrollees with LBP. High rates of comorbidities were evident and associated with physical therapy use. Although few patients entered care in physical therapy, this pattern may be useful for managing costs.

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