scholarly journals Hidden Impact of Molluscum Contagiosum: A Survey of Caregivers’ Experiences with Diagnosis, Treatment, and Impact on Quality of Life

2021 ◽  
Vol 5 (4) ◽  
pp. 363-371
Author(s):  
Pearl Kwong ◽  
Adelaide Hebert ◽  
Collette Utley ◽  
Melissa Olivadoti
Keyword(s):  
Quality Of Life ◽  
Health Care Providers ◽  
Online Survey ◽  
Molluscum Contagiosum ◽  
Consumer Products ◽  
Care Providers ◽  
Recall Time ◽  
Many Sources ◽  
The Impact

Objective: Molluscum contagiosum (molluscum) is considered benign and self-limiting. However, the caregiver and patient experience largely remains a mystery.  This online survey aimed to collect caregivers’ views on their experiences with molluscum infection in their children, including diagnosis, treatment, and the impact of the virus on the caregivers’ and their child’s life.  Methods: Parents, caregivers, and/or legal guardians (ages 18+, 20% male and 80% female) of children diagnosed with molluscum in the past 4 years (ages 3-16 years of age) answered a 15-minute paid online survey with questions about their experience with molluscum. Results: Caregivers (n=150) were mostly Caucasian (85%), 25-44 years of age (87%) and had at least one child with active molluscum (75%) at the time of the survey. The average number of health care providers (HCPs) consulted for molluscum was 1.95 and diagnosis was made by a variety of HCP types.  The spread of molluscum to ≥ 1 child in the household was reported by 60% of caregivers in multi-child households.  The average number of treatments used were 2.36 including HCP-administered treatments and consumer products. Caregivers reported moderate to major impact on their lives (62%) or their child’s life (74%) due to molluscum. Limitations: Questions were not validated, recall time was up to 4 years. Conclusions:  Molluscum patients may receive a diagnosis from many sources.  Caregivers may utilize more than one treatment modality to help clear the infection including consumer products.  Molluscum can cause an impact on quality of life for affected children and their caregivers.

Palliative versus nonpalliative patients’ perceptions of the effect of alcohol consumption on clinical outcomes.

2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 199-199
Author(s):  
Graham McFarlane ◽  
Karmugi Balaratnam ◽  
Peter Selby ◽  
Shabbir Alibbhai ◽  
M. Catherine Brown ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Overall Survival ◽  
Alcohol Consumption ◽  
Alcohol Use ◽  
Health Care Providers ◽  
Cancer Diagnosis ◽  
Care Providers ◽  
The Impact ◽  
Palliative Patients

199 Background: Little is known about the perceptions of palliative patients on the impact of continued alcohol consumption after a cancer diagnosis and whether they are similar to the perceptions of patients who are considered potentially curative. Methods: Patients with diverse cancer subtypes were surveyed at a comprehensive cancer centre, cross-sectionally. Specifically, palliative and non-palliative cancer patients were asked about their perceptions on the benefits/harms of continued drinking on cancer-related quality of life, fatigue, and overall survival, and whether they had received information on their alcohol consumption from their health care providers. Palliative status was established by chart review. Results: Of 1049 patients, 48% were male, with median age of 58 (18-98) years; cancer sites included gastrointestinal, genitourinary, breast, thoracic, hematologic, and others; 16% were classified as being palliative at the time of survey; and 14% reported receiving counselling information on alcohol use sometime after their cancer diagnosis. Compared to curative patients, palliative patients were more likely to perceive continued alcohol consumption as harmful to their fatigue (OR=1.39, P=0.05) and survival (OR=1.45, P=0.03), but less so on quality of life (OR=1.16, P=0.35). When compared to those who had not been counselled, informed patients were twice as likely (OR=2.01, P<0.01) to perceive continued drinking as harmful to their levels of fatigue, although there was less of a difference in their perception of quality of life (OR =1.39, P=0.20) and survival (OR=1.40, P=0.19). Conclusions: Palliative patients are more likely to perceive continued alcohol consumption as harmful to their fatigue and overall survival, when compared to non-palliative patients, especially after receiving counselling. Given the lack of data on the benefits or harm of mild-moderate alcohol use and a strong emphasis on quality of life, future research should focus on effects of alcohol in palliative patients, and there should be improved education to both providers and patients on regarding the current lack of information.

Development of a disease-specific measure of quality of life in myelodysplastic syndromes (MDS): The “QUALMS-1”.

2012 ◽  
Vol 30 (15_suppl) ◽  
pp. 6103-6103 ◽  
Author(s):  
Gregory Alan Abel ◽  
Stephanie Lee ◽  
Richard M. Stone ◽  
David P. Steensma ◽  
Nancy Young ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Care Providers ◽  
Disease Status ◽  
Institutional Setting ◽  
Care Providers ◽  
Routine Tasks ◽  
High Level ◽  
The Impact ◽  
Disease Specific

6103 Background: Studies assessing the quality of life (QoL) experienced by patients with MDS have almost universally relied upon generic measures; however, disease-specific QoL tools can allow for more sensitive assessments of the impact of changes in disease status. Methods: Using a clinical impact method of instrument development, individual and combined focus groups were conducted with 32 members of our institution’s MDS community (patients, their caregivers, and health care providers) to identify MDS-relevant QoL domains and associated question topics. Participants’ rankings of the importance of the domains and question topics were compared, collapsing patients/caregivers into one group and physicians/other providers into another. A draft scale was constructed taking a greater number of questions from the more highly-ranked domains. Results: “Fatigue” was ranked as the most important domain (see table). None of the 12 domains were ranked significantly differently by patients/caregivers versus providers. The two groups ranked 5 of 60 question topics differently: “Too tired for routine tasks” (providers higher; p= .05); “limited availability of support beyond the family” (providers higher; p= .02); “organizing life around transfusion/MD appointments” (providers higher, p= .03); “bruising” (patients/caregivers higher, p= .05) and “anger over diagnosis” (providers higher, p= .03). Conclusions: A high level of agreement in the rankings of domains and question topics between MDS patients/caregivers and providers suggests that the QoL experience of MDS patients is consistently compromised. The resulting 38-item draft QUALMS-1 tool is now being piloted (cognitive debriefing and behavioral coding) in a new cohort of MDS patients, with the ultimate goal of validation in a multi-institutional setting. [Table: see text]

Impact of a Laryngectomy on Quality of Life: Perspective of the Patient versus That of the Health Care Provider

1997 ◽  
Vol 106 (8) ◽  
pp. 693-699 ◽  
Author(s):  
Randal A. Otto ◽  
Valerie Lawrence ◽  
Robert A. Dobie ◽  
Connie Sakai
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Life Expectancy ◽  
Health Care Providers ◽  
Care Provider ◽  
Care Providers ◽  
Trade Off ◽  
Laryngeal Preservation ◽  
The Impact

This study retrospectively assesses the impact of laryngectomy on the quality of life of 46 patients as compared to the perception of the impact of laryngectomy of 13 health care providers (HCPs). Employing the “time trade-off methodology, we assessed patient and HCP preferences and calculated estimated utilities. We found that 20% of patients would be willing to compromise anticipated life expectancy to preserve voice or preoperative quality of life. By comparison, 46% of the HCPs perceived that their patients would be willing to accept a reduced life span in order to preserve their larynx and quality of life. In conclusion, the percentage of HCPs who believed their patients would compromise survival was substantially higher than the percentage of actual patients who expressed this preference. This perception may influence physicians' attitudes toward recommending laryngeal preservation therapy for their patients. For most laryngectomy patients, treatments attempting laryngeal preservation, particularly if associated with compromised survival, may not be warranted.

scholarly journals Psychological risk factors that characterize the trajectories of quality of life after a physical trauma: a longitudinal study using latent class analysis

2021 ◽  
Author(s):  
Eva Visser ◽  
Brenda Leontine Den Oudsten ◽  
Taco Gosens ◽  
Paul Lodder ◽  
Jolanda De Vries
Keyword(s):  
Quality Of Life ◽  
Latent Class Analysis ◽  
Health Care Providers ◽  
Psychological Health ◽  
Latent Class ◽  
Stress Disorder ◽  
Class Analysis ◽  
Care Providers ◽  
Physical Trauma

Abstract Background The course and corresponding characteristics of quality of life (QOL) domains in trauma population are unclear. Our aim was to identify longitudinal QOL trajectories and determine and predict the sociodemographic, clinical, and psychological characteristics of trajectory membership in physical trauma patients using a biopsychosocial approach. Methods Patients completed a questionnaire set after inclusion, and at 3, 6, 9, and 12 months follow-up. Trajectories were identified using repeated-measures latent class analysis. The trajectory characteristics were ranked using Cohen’s d effect size or phi coefficient. Results Altogether, 267 patients were included. The mean age was 54.1 (SD = 16.1), 62% were male, and the median injury severity score was 5.0 [2.0—9.0]. Four latent trajectories were found for psychological health and environment, five for physical health and social relationships, and seven trajectories were found for overall QOL and general health. The trajectories seemed to remain stable over time. For each QOL domain, the identified trajectories differed significantly in terms of anxiety, depressive symptoms, acute stress disorder, post-traumatic stress disorder, Neuroticism, trait anxiety, Extraversion, and Conscientiousness. Discussion Psychological factors characterized the trajectories during 12 months after trauma. Health care providers can use these findings to identify patients at risk for impaired QOL and offer patient-centered care to improve QOL.

scholarly journals Patient Suffering in Chronic Digestive Diseases: Will Primary Care-Specialist Collaboration With Effective Interactive Communication and Integrative Medicine in the Plan of Care Improve Quality of Life?

2020 ◽  
Vol 7 (6) ◽  
pp. 989-993
Author(s):  
Andrew Thomas ◽  
Annie Thomas
Keyword(s):  
Quality Of Life ◽  
Primary Care ◽  
Health Care ◽  
Health Care Providers ◽  
The United States ◽  
Care Providers ◽  
Physician Visits ◽  
Digestive Diseases ◽  
Care Specialist

Acute and chronic digestive diseases are causing increased burden to patients and are increasing the United States health care spending. The purpose of this case report was to present how nonconfirmatory and conflicting diagnoses led to increased burden and suffering for a patient thus affecting quality of life. There were many physician visits and multiple tests performed on the patient. However, the primary care physician and specialists could not reach a confirmatory diagnosis. The treatment plans did not offer relief of symptoms, and the patient continues to experience digestive symptoms, enduring this burden for over 2 years. The central theme of this paper is to inform health care providers the importance of utilizing evidence-based primary care specialist collaboration models for better digestive disease outcomes. Consistent with patient’s experience, the authors propose to pilot/adopt the integrative health care approaches that are proven effective for treating digestive diseases.

scholarly journals The Impact of COVID-19 Pandemic and Lockdown Measures on Quality of Life among Italian General Population

2021 ◽  
Vol 10 (2) ◽  
pp. 289 ◽  
Author(s):  
Maria Stella Epifanio ◽  
Federica Andrei ◽  
Giacomo Mancini ◽  
Francesca Agostini ◽  
Marco Andrea Piombo ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Online Survey ◽  
Physical Space ◽  
Sampling Strategy ◽  
World Health ◽  
Snowball Sampling ◽  
World Health Organization Quality ◽  
The World ◽  
The Impact

The COVID-19 pandemic that has hit the world in the year 2020 has put a strain on our ability to cope with events and revolutionized our daily habits. On 9 March, Italy was forced to lockdown to prevent the spread of the infection, with measures including the mandatory closure of schools and nonessential activities, travel restrictions, and the obligation to spend entire weeks in the same physical space. The aim of this study was to assess the impact of the COVID-19 pandemic and lockdown measures on quality of life (QoL) in a large Italian sample, in order to investigate possible differences in QoL levels related to both demographic and pandemic-specific variables. A total of 2251 Italian adults (1665 women, mainly young and middle adults) were recruited via a snowball sampling strategy. Participants were requested to answer to an online survey, which included demographic and COVID-related information items, and the World Health Organization Quality of Life BREF questionnaire (WHOQOL-BREF). The results showed statistically significant differences in QoL depending on a number of variables, including sex, area of residence in Italy, and being diagnosed with a medical/psychiatric condition. To our knowledge, this is the first study to assess QoL during COVID-19 pandemic in Italy, therefore the present findings can offer guidelines regarding which social groups are more vulnerable of a decline in QoL and would benefit of psychological interventions.

scholarly journals The Effect of "Pathway" to Diagnosis for Childhood ITP on Caregiver Quality of Life at Time of Diagnosis

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 2174-2174
Author(s):  
Michelle Neier ◽  
Michele P. Lambert ◽  
Rachael F. Grace ◽  
Kerry Hege ◽  
Stephanie Chiu ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Provider ◽  
Health Care Providers ◽  
Care Provider ◽  
Research Funding ◽  
Care Providers ◽  
Significant Difference ◽  
Time To Diagnosis ◽  
The Impact

Background: Immune thrombocytopenia (ITP) is an immune mediated bleeding disorder characterized by isolated thrombocytopenia. ITP can have a variety of presentations from asymptomatic to life threatening bleeding. Although childhood ITP is most often a self-resolving illness which can be closely observed without intervention, it can be associated with significant impact on quality of life (QoL). Prospective studies of QoL in ITP patients show that there is not always a correlation with treatment or disease severity. The pathway from initial presentation to final diagnosis varies and may include encounters with emergency room, primary care or specialty providers. There have been no published studies to date showing the impact of factors prior to the diagnosis of ITP on treatment decision making and QoL. Objective: To identify the role of physician-patient and physician-caregiver interactions on the QoL and emotional well-being of patients and their families. Ascertaining the impact of pre-diagnosis factors may provide an opportunity to improve access and quality of care provided. Methods: The ITP Consortium of North America (ICON) "Pathways" study was a multicenter observational prospective cohort study focused on the pathways to diagnosis of ITP. The study was supported by a Foundation for Morristown Medical Center Research Fund Grant. Subjects were included if they had presumed primary ITP and were age >12 months to <18 years. Subjects were excluded if they had secondary ITP, including Evans syndrome. Treatment was determined by the physician. Subjects were consented and presented with questionnaires to be completed at the conclusion of the initial hematology visit. The hematologist also completed survey data at that time. Survey data forms included demographic form, physician form, Peds QL Family Impact Questionnaire, Kids ITP tools (KIT) Parent Impact Report and parent proxy report, and child (patient) KIT self-report. There was a parent questionnaire which included a question about worry with a scale from 0 to 10. Study data were collected and managed using REDCap electronic data capture tools hosted at Atlantic Health System. Correlation between variables were calculated using Pearson coefficient or Spearman's rho depending on the distribution of the data variables. Results: Sixty subjects and caregivers were enrolled at 6 ICON centers; 52 were eligible for inclusion. The majority (40%) had Grade 1 bleeding. Most patients (82%) were seen in outpatient hematology clinic by the hematologist and had been referred by the emergency room (73%). The median time to consultation with a hematologist from onset of symptoms was 7 days (1-199) and the median time to diagnosis by hematologist from initial contact with a health care provider was 5 days (0-154). Most subjects had seen 2 health care providers prior to the hematologist. KIT proxy report cumulative scores were a mean of 76.03 (SD 14.72). There was no significant difference between the time to diagnosis or the time from initial encounter with health care provider to hematologist and initial level of worry (p=0.70 and 0.90, respectively). There was also no significant difference between the time to diagnosis or the time from initial encounter with health care provider to hematologist and KIT proxy scores (p=0.96 and 0.50, respectively). However, there was a significant decline in level of worry (scale 0-10) prior to the hematologist visit (median 8, range 1-10) to after the visit (median 4, range 1-10). The association between number of medical providers encountered prior to diagnosis and KIT proxy scores was not significant (p=0.45) (Table). Conclusions: In this study at 6 teaching institutions, we were unable to detect a significant difference in proxy-reported KIT scores relative to the number of health care providers seen or time from diagnosis until the first encounter with the hematologist. We were, however, able to detect a significant change in the level of caregiver worry pre- and post- visit with the pediatric hematologist, supporting a benefit of specialist care to the caregivers of children with ITP. This study was limited by its small sample size and retrospective design. ITP is considered a benign disease but is associated with a significant amount of worry and impact on QoL for patients and caregivers which warrants further investigation. Disclosures Lambert: CSL Behring: Consultancy; Amgen: Consultancy, Other; Bayer: Other: Ad boards; Novartis: Other: Ad boards, Research Funding; Shionogi: Consultancy; Kedrion: Consultancy; Sysmex: Consultancy; AstraZeneca: Research Funding; PDSA: Research Funding. Grace:Agios Pharmaceuticals, Inc: Consultancy, Membership on an entity's Board of Directors or advisory committees, Research Funding; Novartis: Research Funding.

scholarly journals Attitudes About COVID-19 and Health: A Mixed-Methods Smartphone-App and Online Survey Study (Preprint)

2021 ◽  
Author(s):  
Anna M. Hood ◽  
Hanne Stotesbury ◽  
Jennifer Murphy ◽  
Melanie Kölbel ◽  
April Slee ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Data Collection ◽  
Physical Health ◽  
Online Survey ◽  
Smartphone App ◽  
The Uk ◽  
The Impact ◽  
Monthly Survey

BACKGROUND Behavioral mitigation strategies to slow the spread of COVID-19 have resulted in sweeping lifestyle changes, with short and long-term psychological, well-being, and quality of life implications. The Attitudes About COVID-19 and Health (ATTACH) study focuses on understanding attitudes and beliefs whilst considering the impact on mental and physical health and the influence of broader demographic and geographic factors on attitudes, beliefs, and mental health burden. OBJECTIVE In this assessment of our first wave of data collection, we provide baseline cohort descriptives of ATTACH study participants in the United Kingdom (UK), United States of America (USA), and Mexico. Additionally, we assess responses to daily poll questions related to COVID-19 and conduct a cross-sectional analysis of baseline assessments collected in the UK between June 26 and October 31, 2020. METHODS The ATTACH study uses smartphone-app technology and online survey data collection. Participants completed poll questions twice daily related to COVID-19 and a monthly survey assessing mental health, social isolation, physical health, and quality of life. Poll question responses were graphed using 95% Clopper-Pearson (exact) tests with 95% confidence intervals. Pearson correlations, hierarchical linear regression analyses, and generalized linear models assessed relationships, predictors of self-reported outcomes, and group differences, respectively. RESULTS By October 31, 2020, 1405, 80, and 90 participants had consented to participate in the UK, USA, and Mexico, respectively. Descriptive data for the UK daily poll questions indicated that participants were generally following social distancing measures, but worry and negative impacts on families increased as the pandemic progressed. Although participants generally reported feeling that the reasons for current measures had been made clear, there was low trust that the government was doing everything in its power to meet public needs. In the UK, 1282 participants also completed a monthly survey (95% white, 72% female, 21% key or essential workers). Nineteen percent of UK participants reported a pre-existing mental health disorder, 31% reported a pre-existing chronic medical illness, and 35% were over 65. Fifty-seven percent of participants reported being more sedentary since the pandemic began, and 41% reported reduced access to medical care. Those with poorer mental health outcomes lived in more deprived neighborhoods, in larger households (ps < .05), had more pre-existing mental health disorders and medical conditions, and were younger than 65 years (all ps < .001). CONCLUSIONS Communities who have been exposed to additional harm during the COVID-19 pandemic were experiencing worse mental outcomes. Factors including having a medical condition, or living in a deprived neighborhood or larger household were associated with heightened risk. Future longitudinal studies should investigate the link between COVID-19 exposure, mental health, and sociodemographic and residential characteristics.

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