Seek or Provide: Comparative Effects of Online Information Sharing on Seniors’ Quality of Life

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

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A National Representative, Cross-Sectional Study by the Hellenic Academy of NeuroImmunology (HEL.A.NI.) on COVID-19 and Multiple Sclerosis: Overall Impact and Willingness Toward Vaccination

Frontiers in Neurology ◽

10.3389/fneur.2021.757038 ◽

2021 ◽

Vol 12 ◽

Author(s):

Marina Boziki ◽

Charis Styliadis ◽

Christos Bakirtzis ◽

Eleni Grigoriadou ◽

Aggeliki-Styliani Sintila ◽

...

Keyword(s):

Quality Of Life ◽

Multiple Sclerosis ◽

Sexual Dysfunction ◽

Significant Proportion ◽

Cross Sectional Study ◽

Information And Communications Technology ◽

Online Information ◽

Cross Sectional ◽

And Behavior

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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Self-Compassion and Quality of Life in Adults Who Stutter

American Journal of Speech-Language Pathology ◽

10.1044/2020_ajslp-20-00055 ◽

2020 ◽

Vol 29 (4) ◽

pp. 2097-2108

Author(s):

Robyn L. Croft ◽

Courtney T. Byrd

Keyword(s):

Quality Of Life ◽

Social Connectedness ◽

The Self ◽

Future Research ◽

Self Compassion ◽

Adults Who Stutter ◽

And Gender ◽

Relationship Of ◽

The Impact

Purpose The purpose of this study was to identify levels of self-compassion in adults who do and do not stutter and to determine whether self-compassion predicts the impact of stuttering on quality of life in adults who stutter. Method Participants included 140 adults who do and do not stutter matched for age and gender. All participants completed the Self-Compassion Scale. Adults who stutter also completed the Overall Assessment of the Speaker's Experience of Stuttering. Data were analyzed for self-compassion differences between and within adults who do and do not stutter and to predict self-compassion on quality of life in adults who stutter. Results Adults who do and do not stutter exhibited no significant differences in total self-compassion, regardless of participant gender. A simple linear regression of the total self-compassion score and total Overall Assessment of the Speaker's Experience of Stuttering score showed a significant, negative linear relationship of self-compassion predicting the impact of stuttering on quality of life. Conclusions Data suggest that higher levels of self-kindness, mindfulness, and social connectedness (i.e., self-compassion) are related to reduced negative reactions to stuttering, an increased participation in daily communication situations, and an improved overall quality of life. Future research should replicate current findings and identify moderators of the self-compassion–quality of life relationship.

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Misophonia: An Evidence-Based Case Report

American Journal of Audiology ◽

10.1044/2020_aja-19-00111 ◽

2020 ◽

Vol 29 (4) ◽

pp. 685-690

Author(s):

C. S. Vanaja ◽

Miriam Soni Abigail

Keyword(s):

Quality Of Life ◽

Case Report ◽

Case History ◽

Pure Tone ◽

Physiological Responses ◽

Evidence Based ◽

Management Option ◽

Pure Tone Audiogram

Purpose Misophonia is a sound tolerance disorder condition in certain sounds that trigger intense emotional or physiological responses. While some persons may experience misophonia, a few patients suffer from misophonia. However, there is a dearth of literature on audiological assessment and management of persons with misophonia. The purpose of this report is to discuss the assessment of misophonia and highlight the management option that helped a patient with misophonia. Method A case study of a 26-year-old woman with the complaint of decreased tolerance to specific sounds affecting quality of life is reported. Audiological assessment differentiated misophonia from hyperacusis. Management included retraining counseling as well as desensitization and habituation therapy based on the principles described by P. J. Jastreboff and Jastreboff (2014). A misophonia questionnaire was administered at regular intervals to monitor the effectiveness of therapy. Results A detailed case history and audiological evaluations including pure-tone audiogram and Johnson Hyperacusis Index revealed the presence of misophonia. The patient benefitted from intervention, and the scores of the misophonia questionnaire indicated a decrease in the severity of the problem. Conclusions It is important to differentially diagnose misophonia and hyperacusis in persons with sound tolerance disorders. Retraining counseling as well as desensitization and habituation therapy can help patients who suffer from misophonia.

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Quality of Life of Youth With Hearing Loss

ASHA Leader ◽

10.1044/leader.ftr3.15152010.5 ◽

2010 ◽

Vol 15 (15) ◽

pp. 5-6

Author(s):

Anne Skalicky ◽

Brenda Schick ◽

Donald Patrick

Keyword(s):

Quality Of Life ◽

Hearing Loss

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Assessing Quality of Life With Aphasia: An Annotated Bibliography

Perspectives on Neurophysiology and Neurogenic Speech and Language Disorders ◽

10.1044/nnsld15.4.15 ◽

2005 ◽

Vol 15 (4) ◽

pp. 15-18 ◽

Cited By ~ 2

Author(s):

Katherine B. Ross

Keyword(s):

Quality Of Life ◽

Annotated Bibliography

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Thinking Beyond Language: Intervention for Severe Aphasia

Perspectives on Neurophysiology and Neurogenic Speech and Language Disorders ◽

10.1044/nnsld19.1.15 ◽

2009 ◽

Vol 19 (1) ◽

pp. 15-22 ◽

Cited By ~ 3

Author(s):

Nina Simmons-Mackie

Keyword(s):

Quality Of Life ◽

Communication Training ◽

Language Intervention ◽

Specific Training ◽

Environmental Support ◽

Total Communication ◽

Communication Partners

Abstract Purpose: This article addresses several intervention approaches that aim to improve life for individuals with severe aphasia. Because severe aphasia significantly compromises language, often for the long term, recommended approaches focus on additional domains that affect quality of life. Treatments are discussed that involve increasing participation in personally relevant life situations, enhancing environmental support for communication and participation, and improving communicative confidence. Methods: Interventions that have been suggested in the aphasia literature as particularly appropriate for people with severe aphasia include training in total communication, training of communication partners, and activity specific training. Conclusion: Several intervention approaches can be implemented to enhance life with severe aphasia.

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Chronic Refractory Cough: A Case Study

Perspectives of the ASHA Special Interest Groups ◽

10.1044/persp2.sig3.57 ◽

2017 ◽

Vol 2 (3) ◽

pp. 57-62

Author(s):

Anna Maria Siciliano

Keyword(s):

Quality Of Life ◽

Adult Female ◽

Chronic Cough ◽

Treatment Regime ◽

Speech Language Pathology ◽

Old Adult ◽

Language Pathology

This paper presents a successful behavioral case study in treatment of chronic refractory cough in a 60-year-old adult female. The efficacy for speech-language pathology treating chronic cough is discussed along with description of treatment regime. Discussion focuses on therapy approaches used and the patient's report of changes in quality of life and frequency, duration, and severity reduction of her cough after treatment.

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