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1.
BMC Health Serv Res ; 21(1): 1230, 2021 Nov 13.
Article in English | MEDLINE | ID: mdl-34774034

ABSTRACT

BACKGROUND: People living with Long Term Neurological Conditions (LTNCs) value peer support and social activities. Psychological support and wellbeing enables them to manage their condition. Social prescribing is a formal process of referring patients to a link worker to co-design a plan to improve their health and wellbeing. Intervention involves supporting participation in activities based within the individual's local community. This study aimed to explore the barriers and enablers to accessing social prescribing for people living with LTNCs (plwLTNCs). METHODS: A total of four focus groups were carried out with 17 participants, including different neurological conditions such as multiple sclerosis, Fragile X Syndrome, epilepsy, and traumatic brain injury. Two participants were family carers and supported people living with epilepsy and motor neurone disease. Findings were analysed using thematic analysis. RESULTS: Five themes were identified: (1) Lack of knowledge; (2) Service provision difficulties; (3) Benefits of social prescribing activities; (4) Physical barriers and (5) Psychological barriers. There was a lack of knowledge about social prescribing and what it actually was. Participants anticipated service provision difficulties relating to funding, link workers need for knowledge of LTNC's and for activities to be varied and individualised. The potential benefits of social prescribing activities were recognised across the groups especially its potential to tackle loneliness and to offer plwLTNC's purpose. Participants highlighted a number of physical barriers such as transport and accessibility; and psychological barriers such as anxiety and stigma. CONCLUSION: Social prescribing aims to address the health inequalities of those living with long-term conditions, however currently it is likely to exclude plwLTNCs. Recommendations for practice and future research are made.


Subject(s)
Caregivers , Motor Neuron Disease , Focus Groups , Humans , Loneliness , Qualitative Research
2.
Health Soc Care Community ; 28(6): 2282-2289, 2020 11.
Article in English | MEDLINE | ID: mdl-32483867

ABSTRACT

PURPOSE: People living with Motor Neurone Disease (plwMND) have emphasised the importance of psychological support and well-being in helping them manage their condition. Social prescribing is a formal process of referring patients with largely socioeconomic and psychosocial issues to a link worker to co-design a plan to improve their health and well-being. Intervention involves supporting engagement in meaningful activities based within the individual's local community. This pilot project aimed to explore the application of social prescribing with plwMND. METHODS: A cohort of plwMND were supported by an occupational therapist and link worker to identify and access community-based activities. Qualitative interviews were completed post-intervention with the plwMND and the link workers. Findings were analysed using thematic analysis. RESULTS: A total of nine plwMND took part in this pilot service, and five plwMND and four link workers were interviewed. PlwMND valued participation and wanted to engage in community-based activities. Those with mild symptomatology were able to access activities and reported a positive impact on their well-being. Those with more complex needs, particularly reduced mobility, experienced significant barriers to participation. Barriers included transport, equipment provision, lack of company to support participation and lack of confidence using mobility aids in a community environment. Link workers valued joint working with an occupational therapist. CONCLUSION: Social prescribing aims to address the health inequalities of those living with long-term conditions, although currently it likely excludes plwMND. Future work needs to quantitatively evaluate the effects of the service on the well-being of plwMND.


Subject(s)
Caregivers/psychology , Disabled Persons/psychology , Motor Neuron Disease/psychology , Social Isolation/psychology , Adult , Female , Humans , Male , Pilot Projects , Qualitative Research , Social Environment , Social Support
3.
Orthopedics ; 38(5): e387-93, 2015 May.
Article in English | MEDLINE | ID: mdl-25970365

ABSTRACT

In response to a decline in individual residents' performance and overall program performance on the Orthopaedic In-Training Examination (OITE), the authors' department initiated a daily literature reading program coupled with weekly tests on the assigned material. The goal of this study was to assess the effect of the reading program on individual residents' scores and the training program's OITE scores. The reading program consisted of daily review articles from the Journal of the American Academy of Orthopaedic Surgeons, followed by a weekly written examination consisting of multiple-choice or fill-in-the-blank questions. All articles were selected and all questions were written by the departmental chair. A questionnaire was given to assess residents' perceptions of the weekly tests. As a result of implementing the reading program for a 10-month period, residents' subsequent performance on the OITE significantly improved (mean score increase, 4, P<.0001; percentile score increase, 11, P=.0007). The difference in mean score was significant for residents in postgraduate years 3, 4, and 5. A statistically significant correlation was found between weekly test scores and performance on the OITE, with a significant correlation between weekly test scores and OITE percentile ranking. The study results also showed a positive correlation between reading test attendance and weekly test scores. Residents' anonymous questionnaire responses also demonstrated the reading program to be a valuable addition to the residency training curriculum. In conclusion, the study strongly supports the benefits of a weekly reading and examination program in enhancing the core knowledge of orthopedic surgery residents.


Subject(s)
Education, Medical, Graduate/methods , Educational Measurement/methods , Internship and Residency , Orthopedic Procedures/education , Reading , Clinical Competence , Curriculum , Humans , Periodicals as Topic , Retrospective Studies , Surveys and Questionnaires , Time Factors
4.
J Clin Gastroenterol ; 49(7): 577-81, 2015 Aug.
Article in English | MEDLINE | ID: mdl-25203364

ABSTRACT

BACKGROUND: There has been increasing interest in the use of complementary and alternative medicine (CAM) in the general population. Little is known about CAM use in patients with celiac disease (CD). GOALS: We aimed to determine the demographics and clinical characteristics of patients with biopsy-proven CD who use dietary supplements to treat their symptoms. STUDY: CD patients completed a questionnaire on demographics, types of dietary supplement use, attitudes toward CAM, and 3 validated scales: CD-related Quality Of Life (CD-QOL), the CD Symptoms Index (CSI), and the CD Adherence Test (CDAT). RESULTS: Of 423 patients, 100 (23.6%) used dietary supplements to treat CD symptoms. The most frequently used supplement was probiotics (n=59). Supplement users had a higher CD-QOL score (75.06 vs. 71.43, P=0.04) but had more symptoms based on CSI (35.64 vs. 32.05, P=0.0032). On multivariable analysis, adjusting for age, sex, education, symptom improvement following a gluten-free diet, and where the survey was completed, patients presenting with classic symptoms (OR, 2.56; 95% CI, 1.01-6.44) or nonclassic symptoms (OR, 2.75; 95% CI, 1.04-7.24) were significantly more likely to use supplements than those with asymptomatic/screen-detected CD. CONCLUSIONS: Patients with biopsy-proven CD who have symptoms at diagnosis tend to use dietary supplements more than those that are screen detected. Those using supplements report persistent symptoms, but a higher quality of life. The contribution of the gluten-free diet and supplement use to quality of life in the symptomatic CD patient needs to be determined.


Subject(s)
Celiac Disease/diet therapy , Dietary Supplements/statistics & numerical data , Adolescent , Adult , Aged , Biopsy , Celiac Disease/pathology , Celiac Disease/psychology , Complementary Therapies/psychology , Diet, Gluten-Free , Female , Health Knowledge, Attitudes, Practice , Humans , Male , Middle Aged , Multivariate Analysis , Quality of Life , Surveys and Questionnaires , United States , Young Adult
5.
Therap Adv Gastroenterol ; 6(5): 358-64, 2013 Sep.
Article in English | MEDLINE | ID: mdl-24003336

ABSTRACT

OBJECTIVES: A gluten-free diet is the treatment for celiac disease, but pharmaceutical agents are being developed. The level of interest amongst patients in using a medication to treat celiac disease is unknown. This study examined the level of interest amongst patients in medication to treat celiac disease. METHODS: A questionnaire was distributed to celiac disease patients and data were collected on demographics, presentation, and interest in medication. Three validated celiac disease-specific instruments were incorporated: Celiac Disease Associated Quality of Life, the Celiac Symptom Index, and the Celiac Dietary Adherence Test. RESULTS: Responses were received from 365 individuals with biopsy-proven celiac disease. Respondents were 78% (n = 276) female, 48% (n = 170) over 50 years of age, and experienced a classical (diarrhea predominant) presentation in 44% (n = 154). Of the 339 individuals answering the question regarding use of a medication to treat celiac disease, 66% were interested. Interest was greatest in older individuals (71% >50 years of age versus 60% <50 years of age, p = 0.0415), men (78% men versus 62% women, p = 0.0083), frequent restaurant customers (76% versus 58%, p = 0.0006), those dissatisfied with their weight (73% versus 51%, p = 0.0003) and those concerned with the cost of a gluten-free diet (77% versus 64%, p = 0.0176). Length of time since diagnosis, education, presentation, and symptoms with gluten exposure did not demonstrate any effect. Interest in medication was associated with a worse quality of life (CD-QOL 69.4 versus 80.1, p < 0.0001). CONCLUSIONS: Most individuals with celiac disease are interested in using a medication. Interest was highest among men, older individuals, frequent restaurant customers, individuals dissatisfied with their weight or concerned with the cost of a gluten-free diet, and those with a worse quality of life.

6.
Diabetes Educ ; 39(4): 532-40, 2013.
Article in English | MEDLINE | ID: mdl-23674375

ABSTRACT

OBJECTIVE: The purpose of this study was to investigate screening practices for celiac disease in patients with type 1 diabetes across North America. The research question investigated was whether diabetes centers screen for celiac disease in type 1 diabetes more frequently than other facilities. RESEARCH DESIGN AND METHODS: A survey with 27 questions on screening practices for celiac disease in patients with type 1 diabetes was designed by experts in celiac disease and diabetes. Surveys were sent by email to diabetes educators and dietitians throughout the United States and Canada between December 2010 and May 2011. RESULTS: There were 514 respondents from 484 endocrine clinics, diabetes clinics, private practices, community nutrition centers, and inpatient centers. Thirty-five percent of work locations screened for celiac disease, with endocrine clinics reporting screening at the highest frequency (80%). Tissue transglutaminase was the most common screening test used. The most frequently recommended treatment of confirmed celiac disease was a gluten-free diet. However, only 71% of respondents recommended biopsy in patients with positive serologies. Most respondents (55.3%) reported that the gluten-free diet resulted in symptom improvement in the majority of patients. CONCLUSIONS: Staff at endocrine clinics were more likely to suggest screening for celiac disease in patients with type 1 diabetes. Both low screening frequency as well as inconsistency in management of positive celiac disease serological tests indicated an increase in education regarding celiac disease in patients with type 1 diabetes is required. In addition uniform guidelines should be developed.


Subject(s)
Celiac Disease/diagnosis , Diabetes Mellitus, Type 1/diagnosis , Diet, Diabetic/methods , Diet, Gluten-Free/methods , Mass Screening , Transglutaminases/metabolism , Celiac Disease/diet therapy , Diabetes Mellitus, Type 1/diet therapy , Female , Humans , Male , Patient Compliance , Practice Patterns, Physicians' , Prevalence , Referral and Consultation , Surveys and Questionnaires , United States
7.
Nutrients ; 5(5): 1585-94, 2013 May 15.
Article in English | MEDLINE | ID: mdl-23676548

ABSTRACT

A gluten-free diet (GFD) is the treatment for celiac disease (CD), but due to its complexity, dietitian referral is uniformly recommended. We surveyed patients with CD to determine if dietitian use is associated with quality of life, symptom severity, or GFD adherence. The survey utilized three validated CD-specific instruments: the CD quality of life (CD-QOL), CD symptom index (CSI) and CD adherence test (CDAT). Four hundred and thirteen patients with biopsy-proven CD were eligible for inclusion. The majority (77%) were female and mean BMI was 24.1. Over three-quarters of patients (326, 79%) had seen a dietitian, however, 161 (39%) had seen a dietitian only once. Age, sex, and education level were not associated with dietitian use; nor was BMI (24.6 vs. 24.0, p = 0.45). On multivariate analysis, adjusting for age gender, education, duration of disease, and body mass index, dietitian use was not associated with CD-QOL, CSI, or CDAT scores. Our survey did not show an association between dietitian use and symptom severity, adherence, or quality of life. Delay in diagnosis was associated with poorer outcomes. This is a preliminary study with several limitations, and further prospective analysis is needed to evaluate the benefits and cost-effectiveness of dietitian-referral in the care of celiac disease patients.


Subject(s)
Celiac Disease/diet therapy , Delivery of Health Care , Dietetics , Patient Compliance , Quality of Life , Referral and Consultation , Severity of Illness Index , Activities of Daily Living , Adolescent , Adult , Aged , Celiac Disease/complications , Celiac Disease/diagnosis , Diet, Gluten-Free , Dietetics/statistics & numerical data , Female , Health Care Surveys , Humans , Male , Middle Aged , Multivariate Analysis , Treatment Outcome , Young Adult
8.
J Pediatr Gastroenterol Nutr ; 57(4): 477-86, 2013 Oct.
Article in English | MEDLINE | ID: mdl-23689265

ABSTRACT

OBJECTIVE: Given the social constraints imposed by a gluten-free diet, it can be hypothesized that children with celiac disease (CD) living in the United States have a reduced health-related quality of life (HRQOL); however, there is no validated CD-specific HRQOL instrument for children living in the United States. The goals of this study were to develop and validate a CD-specific HRQOL instrument for children 8 to 18 years of age with CD and to report HRQOL in these children using both generic- and disease-specific instruments. METHODS: This was a prospective study using focus group methodology to develop a CD-specific HRQOL instrument that was then administered to children 8 to 18 years of age with CD living throughout the United States. Instrument validation methods included construct, convergent, and divergent validities. RESULTS: Two instruments were developed: CD-specific pediatric HRQOL instrument (CDPQOL) 8 to 12 and CDPQOL 13 to 18. A total of 181 children with CD completed the CDPQOL as well as a comparator generic instrument. Exploratory factor analysis restructured the CDPQOL and reduced the total number of items. The CDPQOL showed a moderate agreement with the Psychosocial dimensions of the generic instrument confirming convergent validity and low-to-moderate agreement with the Physical Health Summary dimension of the generic instrument confirming divergent validity. CONCLUSIONS: The CDPQOL, consisting of 13 to 17 questions, is a validated instrument for the measurement of HRQOL in children 8 to 18 years of age with CD living in the United States.


Subject(s)
Activities of Daily Living , Celiac Disease , Quality of Life , Surveys and Questionnaires/standards , Adolescent , Celiac Disease/complications , Celiac Disease/psychology , Child , Female , Focus Groups , Health , Humans , Male , Prospective Studies , United States
9.
Gastrointest Endosc Clin N Am ; 22(4): 797-809, 2012 Oct.
Article in English | MEDLINE | ID: mdl-23083994

ABSTRACT

The gluten-free diet is currently the only treatment for celiac disease, and patients should be monitored closely by a dietitian who is knowledgeable regarding this diet. Evaluation by a dietitian includes a comprehensive assessment of dietary history, with an emphasis on caloric and micronutrient intake. Patient knowledge of the gluten-free diet is assessed and interpretation of food labels is taught. Identification of micronutrient deficiencies or comorbid gastrointestinal conditions may occur during a comprehensive dietary assessment. In patients with evidence of gluten exposure, a thorough evaluation for cross-contamination is performed.


Subject(s)
Celiac Disease , Nutrition Assessment , Celiac Disease/diagnosis , Celiac Disease/diet therapy , Diet, Gluten-Free/methods , Food Labeling , Humans , Patient Compliance , Patient Education as Topic
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