Headache and Shunt-Related Impact on Activities of Daily Life in Patients Growing Up with a Ventriculoperitoneal Shunt

2017 ◽  
Vol 79 (03) ◽  
pp. 196-199
Author(s):  
Lina Bellstädt ◽  
Hans-Jakob Steiger ◽  
Sevgi Sarikaya-Seiwert ◽  
Thomas Beez
Keyword(s):  
Quality Of Life ◽  
Chronic Headache ◽  
Negative Impact ◽  
Daily Life ◽  
Future Research ◽  
Psychosocial Outcome ◽  
Growing Up ◽  
Ventriculoperitoneal Shunts ◽  
Per Se

Background/Aims Ventriculoperitoneal shunts (VPS) are a mainstay of treatment for hydrocephalus. Morbidity related to infection and dysfunction is well known, whereas data on psychosocial outcome and quality of life are scarce. Our aim was to assess headache burden and shunt-related impact on daily life in children growing up with a VPS. Methods Patients between 3 and 21 years of age were identified and their families were contacted. A set of standardized questionnaires was used to assess headache and quality of life. Results Fifteen patients with a mean age of 12 years agreed to participate in this study. Satisfaction with the VPS and improvement of the patient's condition was reported by 87%. A total of 67% denied negative impact on everyday life, reported a headache less than once a month, and never or rarely miss school. However, 53% take precautions before special activities. Conclusions The results demonstrate that modern VPS systems are tolerated very well and do not per se reduce quality of life. However, patients adapt to the presence of a VPS by avoiding risks and taking precautions. Chronic headache is not a major problem and not necessarily attributed to the VPS. Nevertheless, most patients asked for technical improvements, which might guide future research and the technical development of VPS.

scholarly journals Improving the understanding of how patients with non-dystrophic myotonia are selected for myotonia treatment with mexiletine (NaMuscla): outcomes of treatment impact using a European Delphi panel

BMC Neurology ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Ann-Marie Chapman ◽  
Marieke Schurer ◽  
Laure Weijers ◽  
Amer Omar ◽  
Hiba Lee ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Natural History ◽  
Negative Impact ◽  
Phase Iii ◽  
Future Research ◽  
Delphi Panel ◽  
Economic Modelling ◽  
Patient Access ◽  
History Of

Abstract Background Non-dystrophic myotonias (NDMs) comprise muscle chloride and sodium channelopathies due to genetic defects of the CLCN1- and SCN4A-channels. No licensed antimyotonic treatment has been available until approval of mexiletine (NaMuscla®) for adult patients by the EMA in December 2018. This Delphi panel aimed to understand how outcomes of the pivotal phase III Mexiletine study (MYOMEX) translate to real world practice and investigate health resource use, quality of life and the natural history of NDM to support economic modelling and facilitate patient access. Methods Nine clinical experts in treating NDM took part in a two-round Delphi panel. Their knowledge of NDM and previous use of mexiletine as an off-label treatment prior to NaMuscla’s approval ensured they could provide both qualitative context and quantitative estimates to support economic modelling comparing mexiletine (NaMuscla) to best supportive care. Consensus in four key areas was sought: healthcare resource utilization (HRU), treatment with mexiletine (NaMuscla), patient quality of life (QoL), and the natural history of disease. Concept questions were also asked, considering perceptions on the feasibility of mapping the validated Individualized Neuromuscular Quality of Life (INQoL) instrument to the generic EQ-5D™, and the potential impact on caregiver QoL. Results Consensus was achieved for key questions including the average long-term dosage of mexiletine (NaMuscla) in practice, the criteria for eligibility of myotonia treatment, the clinical importance of QoL outcomes in MYOMEX, the higher proportion of patients with increased QoL, and the reduction in the need for mental health resources for patients receiving mexiletine (NaMuscla). While consensus was not achieved for other questions, the results demonstrated that most experts felt mexiletine (NaMuscla) reduced the need for HRU and was expected to improve QoL. The QoL mapping exercise suggested that it is feasible to map domains of INQoL to EQ-5D. Points of interest for future research were identified, including that mexiletine (NaMuscla) may slow the annual decrease in QoL of patients over their lifetime, and a significant negative impact on QoL for some caregivers. Conclusions This project successfully provided data from an informed group of clinical experts, complementing the currently available clinical trial data for mexiletine (NaMuscla) to support patient access decisions.

Recruitment and retention of palliative cancer patients and their partners participating in a longitudinal evaluation of a psychosocial retreat program

2009 ◽  
Vol 7 (1) ◽  
pp. 49-56 ◽  
Author(s):  
Sheila N. Garland ◽  
Linda E. Carlson ◽  
Hubert Marr ◽  
Steve Simpson
Keyword(s):  
Quality Of Life ◽  
Cancer Diagnosis ◽  
Psychosocial Intervention ◽  
Negative Impact ◽  
Well Being ◽  
Psychological Support ◽  
Future Research ◽  
Recruitment And Retention ◽  
Spiritual Well Being

AbstractObjective:The negative impact of a palliative cancer diagnosis on the quality of life of patients and their partners is well documented. Unfortunately, research on interventions to improve psychological and spiritual well-being of these couples has been considered impractical because of the deleterious influence of disease progression on participation. This study evaluated the feasibility of offering the Tapestry Retreat, an intensive psychosocial intervention for palliative care patients and their partners.Methods:Participants in the Tapestry Retreat included 15 patients with advanced breast, prostate, or colon cancer and their partners (n = 30). Also included was a natural history group consisting of 20 patients and their partners (n = 40). All couples completed questionnaires related to quality of life, distress, marital satisfaction, and existential concerns at baseline, after the retreat or 1 month after baseline, and then again at 3, 6, 9, and 12 months.Results:Patients in the Tapestry group were significantly more likely to be women who had received prior psychological support and were less comfortable with their finances. Partners attending the Tapestry retreat were also more likely to have received prior psychological support.Significance of results:Despite issues with recruitment and retention, retreat participation was considered feasible. Recommendations for future research are discussed.

scholarly journals Telerehabilitation for Communication and Swallowing Disorders in Parkinson’s Disease

2021 ◽  
pp. 1-6
Author(s):  
Deborah Theodoros
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
New Technologies ◽  
Negative Impact ◽  
Swallowing Disorders ◽  
Future Research ◽  
Patient Centered ◽  
Language Pathology

Communication and swallowing disorders are highly prevalent in people with Parkinson’s disease (PD). The negative impact of these disorders on the quality of life of the person with PD and their families cannot be underestimated. Despite a demand for speech-language pathology services to support people with PD, many barriers to services exist. Telerehabilitation provides an alternate and complementary approach to in-person therapy that is patient-centered, enables timely assessment and intervention, and facilitates continuity of care throughout the course of the disease. This review explores the telerehabilitation applications designed for the management of the communication and swallowing disorders in PD, addresses the benefits and challenges of telerehabilitation, identifies future research directions, and highlights the potential of new technologies to enhance the management of communication and swallowing disorders and quality of life for people with PD.

scholarly journals “A Major Quality of Life Issue”: A Survey-Based Analysis of the Experiences of Adults With Laryngotracheal Stenosis with Mucus and Cough

2021 ◽  
pp. 000348942110506
Author(s):  
Gemma M. Clunie ◽  
Catherine Anderson ◽  
Matthew Savage ◽  
Catherine Hughes ◽  
Justin W. G. Roe ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Impact ◽  
Negative Impact ◽  
Treatment Options ◽  
Management Strategies ◽  
Psychological Impact ◽  
Future Research ◽  
Free Text ◽  
Laryngotracheal Stenosis

Objectives: To investigate how the symptoms of mucus and cough impact adults living with laryngotracheal stenosis, and to use this information to guide future research and treatment plans. Methods: A survey was developed with the support of patient advisors and distributed to people suffering with laryngotracheal stenosis. The survey comprised 15 closed and open questions relating to mucus and cough and included the Leicester Cough Questionnaire (LCQ). Descriptive statistics, X2 and thematic analyses were completed. Results: In total, 641 participants completed the survey, with 83.62% (n = 536) reporting problems with mucus; 79% having daily issues of varying severity that led to difficulties with cough (46.18%) and breathing (20.90%). Mucus affected voice and swallowing to a lesser degree. Respondents described a range of triggers; they identified smoky air as the worst environmental trigger. Strategies to manage mucus varied widely with drinking water (72.26%), increasing liquid intake in general (49.35%) and avoiding or reducing dairy (45.32%) the most common approaches to control symptoms. The LCQ showed a median total score of 14 (interquartile range 11-17) indicative of cough negatively affecting quality of life. Thematic analysis of free text responses identified 4 key themes—the Mucus Cycle, Social impact, Psychological impact, and Physical impact. Conclusion: This study shows the relevance of research focusing on mucus and cough and its negative impact on quality of life, among adults with laryngotracheal stenosis. It demonstrates the inconsistent advice and management strategies provided by clinicians for this issue. Further research is required to identify clearer treatment options and pathways.

Self-Compassion and Quality of Life in Adults Who Stutter

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.

The Power of Everyday Aesthetics in World-Making

2017 ◽  
Author(s):  
Yuriko Saito
Keyword(s):  
Quality Of Life ◽  
Social Responsibility ◽  
Interpersonal Relationships ◽  
Daily Life ◽  
Personal Life ◽  
Moral Virtues ◽  
Everyday Aesthetics ◽  
The World ◽  
The Aesthetic

This chapter argues for the importance of cultivating aesthetic literacy and vigilance, as well as practicing aesthetic expressions of moral virtues. In light of the considerable power of the aesthetic to affect, sometimes determine, people’s choices, decisions, and actions in daily life, everyday aesthetics discourse has a social responsibility to guide its power toward enriching personal life, facilitating respectful and satisfying interpersonal relationships, creating a civil and humane society, and ensuring the sustainable future. As an aesthetics discourse, its distinct domain unencumbered by these life concerns needs to be protected. At the same time, denying or ignoring the connection with them decontextualizes and marginalizes aesthetics. Aesthetics is an indispensable instrument for assessing and improving the quality of life and the state of the world, and it behooves everyday aesthetics discourse to reclaim its rightful place and to actively engage with the world-making project.

scholarly journals Perceived and objective availability of green and blue spaces and quality of life in people with dementia: results from the IDEAL programme

2021 ◽  
Author(s):  
Yu-Tzu Wu ◽  
◽  
Linda Clare ◽  
Ian Rees Jones ◽  
Sharon M. Nelis ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Urban Areas ◽  
Positive Association ◽  
Deprivation Level ◽  
Community Dwelling ◽  
Future Research ◽  
Interaction Terms ◽  
Perceived Availability ◽  
People With Dementia

Abstract Purpose The aim of this study was to investigate the associations between quality of life and both perceived and objective availability of local green and blue spaces in people with dementia, including potential variation across rural/urban settings and those with/without opportunities to go outdoors. Methods This study was based on 1540 community-dwelling people with dementia in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme. Quality of life was measured by the Quality of Life in Alzheimer’s Disease (QoL-AD) scale. A list of 12 types of green and blue spaces was used to measure perceived availability while objective availability was estimated using geographic information system data. Regression modelling was employed to investigate the associations of quality of life with perceived and objective availability of green and blue spaces, adjusting for individual factors and deprivation level. Interaction terms with rural/urban areas or opportunities to go outdoors were fitted to test whether the associations differed across these subgroups. Results Higher QoL-AD scores were associated with higher perceived availability of local green and blue spaces (0.82; 95% CI 0.06, 1.58) but not objective availability. The positive association between perceived availability and quality of life was stronger for urban (1.50; 95% CI 0.52, 2.48) than rural residents but did not differ between participants with and without opportunities to go outdoors. Conclusions Only perceived availability was related to quality of life in people with dementia. Future research may investigate how people with dementia utilise green and blue spaces and improve dementia-friendliness of these spaces.

scholarly journals COVID-19 Pandemic and Quality of Life among Romanian Athletes

2021 ◽  
Vol 18 (8) ◽  
pp. 4065
Author(s):  
Germina-Alina Cosma ◽  
Alina Chiracu ◽  
Amalia Raluca Stepan ◽  
Marian Alexandru Cosma ◽  
Marian Costin Nanu ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Trait Anxiety ◽  
Negative Impact ◽  
Well Being ◽  
Quality Of Life Scale ◽  
Life Scale ◽  
Personality Item ◽  
The Impact ◽  
The Relationship

The aim of this study was to analyze athletes’ quality of life during the COVID-19 pandemic. The study involved 249 athletes between 15 and 35 of age, M = 21.22, SD = 5.12. The sample was composed of eight Olympic Games medalists, three European medalists, 67 international medalists, and 63 national medalists. The instruments used were: (1) COVID-19 Anxiety Scale, (2) Athlete Quality of Life Scale, (3) Impact of Pandemic on Athletes Questionnaire, and (4) International Personality Item Pool (IPIP Anxiety, Depression, and Vulnerability Scales). The results indicate significant differences in COVID-19 anxiety depending on the sport practiced, F (9239) = 3.81, p < 0.01, showing that there were significant differences between sports. The negative impact of the COVID-19 pandemic mediates the relationship between trait anxiety and the athletes’ quality of life. The percentage of mediation was 33.9%, and the indirect effect was −0.11, CI 95% (−0.18, −0.03), Z = −2.82, p < 0.01. Trait anxiety has an increasing effect on the intensity of the negative impact of the COVID-19 pandemic, 0.23, CI 95% (.10, 0.35), Z = 3.56, p < 0.01, and the negative impact of the COVID-19 pandemic has a decreasing effect on quality of life, −0.47, CI 95% (−0.67, −0.27), Z = −4.62, p < 0.01. Gender and age did not moderate the relationship between the negative impact of COVID-19 and athletes’ quality of life. The results of the study highlighted the impact that social isolation and quarantine have on athletes’ affective well-being.

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