scholarly journals Monitoring My Multiple Sclerosis

2011 ◽  
Vol 13 (3) ◽  
pp. 137-145 ◽  
Author(s):  
Elsie E. Gulick ◽  
Marie Namey ◽  
June Halper

Optimal health of people with multiple sclerosis (MS) can be promoted by patients' sharing of health information gained through periodic self-monitoring with their health-care providers. The purpose of this study was to develop a valid and reliable self-administered scale to obtain information about MS patients' health status and the impact of the disease on their daily lives. We named this scale “Monitoring My Multiple Sclerosis” (MMMS). A cross-sectional survey was conducted of 171 MS patients who completed the MMMS and Patient-Determined Disease Steps (PDDS) scales and provided information on their MS disease classification and demographic characteristics. Data analysis included several parametric procedures. Factor analysis of the 26-item MMMS resulted in four factors with satisfactory α reliability coefficients for the total scale (0.90) and factored subscales: Physical (0.85), Relationships (0.80), Energy (0.70), and Cognitive/Mental (0.67). Analysis of variance demonstrated that the total scale and the Physical subscale, but not the Relationships subscale, showed significantly worse functioning for patients with either moderate or severe disability as measured by the PDDS than for patients with mild disability (P < .001). The Cognitive/Mental subscale showed significantly worse functioning for patients with moderate disability than for patients with mild disability (P < .05). However, the Energy subscale showed significantly worse functioning among moderately disabled patients than among severely disabled patients (P < .01). Independent t tests demonstrated that patients classified as having secondary progressive multiple sclerosis had significantly worse scores on the total MMMS (P < .05) and the Physical subscale (P < .001) than those classified as having relapsing-remitting multiple sclerosis. The MMMS demonstrated satisfactory reliability and validity and is recommended for use by MS patients and their health-care providers as a mechanism to promote the sharing of health information, to the benefit of both patients and providers.

2008 ◽  
Vol 4 (1) ◽  
pp. 22-32 ◽  
Author(s):  
Terry Peak ◽  
Julie Gast ◽  
Denice Ahlstrom

Historically, Latino men are an understudied group. Researchers know little about the impact of culture or gender on health concerns. In this study, focus groups with Latino men were held that investigated their health concerns, barriers, motivators, and access to health information and health services. Additionally, the researchers wished to determine if a church-based design might help reach men who might not be responsive to more traditional health education or public health routes. Results included that the Latino male participants in this study wanted health information but wanted it to be more specific and in an accessible format. They also desired more Spanish-speaking health care providers and were acutely interested in low-cost health care. Prevention was not of much interest to these participants. Church-attending participants were interested in church-based health education.


2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Rebecca M. Simpson ◽  
Emma Knowles ◽  
Alicia O’Cathain

Abstract Background A person’s health literacy determines whether they are able to make appropriate health decisions and are able to follow treatment instructions. This is important because low health literacy is associated with mortality and extra costs to the healthcare system. Our aim was to describe the health literacy levels of British adults using a nationally representative population survey, and show how health literacy levels vary by population characteristics. Methods A population based cross-sectional survey including questions from two domains from the Health Literacy Questionnaire™: 1) Understanding health information well enough to know what to do, and 2) Ability to actively engage with health care providers. Both domains are made up of 5 Likert style questions with 5 levels ranging from ‘cannot do or always difficult’ (1) to ‘always easy’ (5). The survey was conducted by NatCen in Britain (2018) as part of the annual British Social Attitudes survey. We used weighted descriptive analyses and regression to explore the relationship between population characteristics and health literacy. Weighted analyses were used to ensure the sample was representative of the British population. Results A total of 2309 responded to the questionnaire. The mean score for ‘understanding information’ was 3.98 (95% CI: 3.94, 4.02) and for ‘ability to engage’ was 3.83 (95% CI: 3.80, 3.87), where 5 is the highest score. 19.4% had some level of difficulty reading and understanding written health information, and 23.2% discussing health concerns with health care providers. The adjusted logistic regression for ‘understanding information’ showed that those with lower health literacy were more likely to be in the most socially deprived quintile (OR 2.500 95% CI: 1.180, 5.296), have a limiting health condition or disability (OR 4.326 95% CI: 2.494, 7.704), and have no educational qualifications (OR 7.588 95% CI: 3.305, 17.422). This was similar for the ‘ability to engage’ domain. Conclusions This study described the distribution of health literacy levels for the British population in 2018. Interventions to improve health literacy will best be targeted at those with lower levels of education, those living in the most deprived areas, and those with a limiting health condition or disability.


2020 ◽  
Vol 59 (04/05) ◽  
pp. 162-178
Author(s):  
Pouyan Esmaeilzadeh

Abstract Background Patients may seek health care services from various providers during treatment. These providers could serve in a network (affiliated) or practice separately (unaffiliated). Thus, using secure and reliable health information exchange (HIE) mechanisms would be critical to transfer sensitive personal health information (PHI) across distances. Studying patients' perceptions and opinions about exchange mechanisms could help health care providers build more complete HIEs' databases and develop robust privacy policies, consent processes, and patient education programs. Objectives Due to the exploratory nature of this study, we aim to shed more light on public perspectives (benefits, concerns, and risks) associated with the four data exchange practices in the health care sector. Methods In this study, we compared public perceptions and expectations regarding four common types of exchange mechanisms used in the United States (i.e., traditional, direct, query-based, patient-mediated exchange mechanisms). Traditional is an exchange through fax, paper mailing, or phone calls, direct is a provider-to-provider exchange, query-based is sharing patient data with a central repository, and patient-mediated is an exchange mechanism in which patients can access data and monitor sharing. Data were collected from 1,624 subjects using an online survey to examine the benefits, risks, and concerns associated with the four exchange mechanisms from patients' perspectives. Results Findings indicate that several concerns and risks such as privacy concerns, security risks, trust issues, and psychological risks are raised. Besides, multiple benefits such as access to complete information, communication improvement, timely and convenient information sharing, cost-saving, and medical error reduction are highlighted by respondents. Through consideration of all risks and benefits associated with the four exchange mechanisms, the direct HIE mechanism was selected by respondents as the most preferred mechanism of information exchange among providers. More than half of the respondents (56.18%) stated that overall they favored direct exchange over the other mechanisms. 42.70% of respondents expected to be more likely to share their PHI with health care providers who implemented and utilized a direct exchange mechanism. 43.26% of respondents believed that they would support health care providers to leverage a direct HIE mechanism for sharing their PHI with other providers. The results exhibit that individuals expect greater benefits and fewer adverse effects from direct HIE among health care providers. Overall, the general public sentiment is more in favor of direct data transfer. Our results highlight that greater public trust in exchange mechanisms is required, and information privacy and security risks must be addressed before the widespread implementation of such mechanisms. Conclusion This exploratory study's findings could be interesting for health care providers and HIE policymakers to analyze how consumers perceive the current exchange mechanisms, what concerns should be addressed, and how the exchange mechanisms could be modified to meet consumers' needs.


2016 ◽  
Vol 27 (7) ◽  
pp. 994-1005 ◽  
Author(s):  
Dolores Angela Castelli Dransart

The objective of this study is to identify patterns (components and processes) of reconstruction of suicide survivors. In-depth interviews were conducted with 50 survivors of suicide in Switzerland. Data were analyzed using ATLAS.ti and according to the Grounded Theory principles. Survivors of suicide face four major challenges: dealing with the impact of suicide, searching for meaning, clarifying responsibility, and finding a personal style of reaction and coping. The various ways in which survivors fare through the specific processes of the challenges result in various patterns of reconstruction: the vulnerability, transformation, commitment, and hard blow. The unique characteristics and dynamics of each of them are highlighted. Health care providers would benefit from an approach based on the dynamics of the various patterns of reconstruction in providing appropriate support to survivors of suicide.


2009 ◽  
Vol 20 (5) ◽  
pp. 346-350 ◽  
Author(s):  
G Webber ◽  
N Edwards ◽  
I D Graham ◽  
C Amaratunga ◽  
I Gaboury ◽  
...  

Cambodia has one of the highest prevalence rates of HIV in Asia and is scaling up HIV testing. We conducted a cross-sectional survey with 358 health care providers in Phnom Penh, Cambodia to assess readiness for voluntary testing and counselling for HIV. We measured HIV knowledge and attitudes, and predictors of intentions to take a sexual history using the Theory of Planned Behaviour. Over 90% of health care providers correctly answered knowledge questions about HIV transmission, but their attitudes were often not positive towards people living with HIV. The Theory of Planned Behaviour constructs explained 56% of the variance in intention to take a sexual history: the control providers perceive they have over taking a sexual history was the strongest contributor (51%), while social pressure explained a further 3%. Attitudes about taking a sexual history did not contribute to intention. Interventions with Cambodian health care providers should focus on improving skills in sexual history-taking.


2007 ◽  
Vol 13 (3) ◽  
pp. 29 ◽  
Author(s):  
Emily Mauldon

This paper reports on the attitudes of a sample of health care providers towards the use of telehealth to support rural patients and integrate rural primary health and urban hospital care. Telehealth and other information technologies hold the promise of improving the quality of care for people in rural and remote areas and for supporting rural primary health care providers. While seemingly beneficial for rural patients, study participants believed that telehealth remains underused and poorly integrated into their practice. In general, participants thought that telehealth is potentially beneficial but places constraints on their activities, and few actually used it. Published literature usually reports either on the success of telehealth pilot projects or initiatives that are well resourced and do not reflect the constraints of routine practice, or has an international focus limiting its relevance to the Australian context. Because of the paucity of systematic and generalisable research into the effects of the routine use of telehealth to support rural patients, it is unclear why health care professionals choose to provide such services or the costs and benefits they incur in doing so. Research and policy initiatives continue to be needed to identify the impact of telehealth within the context of Australian primary health care and to develop strategies to support its use.


2018 ◽  
Vol 13 (02) ◽  
pp. 109-115 ◽  
Author(s):  
Frederick M. Burkle ◽  
Adam L. Kushner ◽  
Christos Giannou ◽  
Mary A. Paterson ◽  
Sherry M. Wren ◽  
...  

AbstractSince 1945, the reason for humanitarian crises and the way in which the world responds to them has dramatically changed every 10 to 15 years or less. Planning, response, and recovery for these tragic events have often been ad hoc, inconsistent, and insufficient, largely because of the complexity of global humanitarian demands and their corresponding response system capabilities. This historical perspective chronicles the transformation of war and armed conflicts from the Cold War to today, emphasizing the impact these events have had on humanitarian professionals and their struggle to adapt to increasing humanitarian, operational, and political challenges. An unprecedented independent United Nations–World Health Organization decision in the Battle for Mosul in Iraq to deploy to combat zones emergency medical teams unprepared in the skills of decades-tested war and armed conflict preparation and response afforded to health care providers and dictated by International Humanitarian Law and Geneva Convention protections has abruptly challenged future decision-making and deployments. (Disaster Med Public Health Preparedness. 2019;13:109–115)


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