scholarly journals THU0360 EFFICACY OF A SELF-TREATMENT PROTOCOL FOR FACE AND TEMPOROMANDIBULAR JOINTS REHABILITATION IN SYSTEMIC SCLEROSIS (SSC)

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 411.2-411
Author(s):  
M. Passalacqua ◽  
C. Foggi ◽  
N. Mauro ◽  
L. Tofani ◽  
S. Guiducci ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systemic Sclerosis ◽  
Treatment Protocol ◽  
Mouth Opening ◽  
Well Being ◽  
Skin Involvement ◽  
Measurement Scales ◽  
The Face ◽  
Group 2

Background:In SSc, skin involvement of the face is frequent and extremely disabling, resulting in limited mouth opening, an altered dentition, difficulty in teeth care, as well as having a strong impact on the emotional and psychological well-being, thus impairing quality of life.Objectives:to evaluate the efficacy of a self-treatment protocol (created by AMURR A Multidisciplinary Association of Rheumatological Rehabilitation) for face and tempomandibular joints (TMJs) rehabilitation with two devices used in the dental field.Methods:40 SSc patients (37 female and 3 male) with a mouth opening ≤ 40 mm, were recruited and randomized in two groups of treatment: Group 1 (20 patients: mean age 50,650 yrs ± 13,937 SD, mean disease duraton 10,45 yrs ± 7,877 SD, opening mouth 32,250 mm ± 5,590 SD) treated with a home self-treatment protocol consisting of 23 exercises carried out at home in front of a mirror, 22/23 exercises were performed once a day, one of these using a device to obtain uniform stretching of the buccal rhyme, another one usingused three times a day to reduce tension of muscles of the TMJs, facilitating the mouth opening; group 2 (20 patients: mean age 58,05 yrs ± 18,103 SD, mean disease duration 17,4 yrs ± 15,017 SD, opening mouth 34,950 mm ± 5,753) without physical rehabilitation, only drugs as treatments of SSc and its complications. All patients underwent a baseline (T0) and 45 days (T1) clinimetric assessment by self-assessment of quality of life with SF-36 (Short-Form 36 Health Survey), of the degree of disability of the mouth with MHISS (of the Mouth Handicap in Systemic Sclerosis scale), Muscle pain evaluated by numerical rating scale (NRS) of the temporomandibular joint with TMD (Temporo mandibular Disorders), evaluation of mouth opening and ROM of the cervical spine. Statistical analysis was performed using the t-test or the Mann-Whitney test for assessing changes in all measurement scales between treatment groups.Results:The protocol of home physiotherapy exercises resulted in a statistically significant improvement in the treated group compared to group 2 both for mouth opening (T0: 32,250 ± 5,590, T1: 35,650 ± 6,046) vs (T0: 34,950 ± 5,753 T1: 34,300 ± 6,001) (p<0.001), cervical flexion (T0: 2,950 ± 1,939 T1: 1.700 ± 1,525) vs (T0: 4,450 ± 2,282 T1:4,075 ± 2,238) (p<0.01), cervical extension (T0: 17,025 ± 1,895 T1: 17,625 ± 1,605) vs (T0: 17,050 ± 2,089 T1: 16,525 ± 3,110) (p<0.05), cervical right lateral flexion (T0: 14,075 ± 2,386 T1:13,400 ± 2,431) vs (T0: 14,200 ± 1,765 T1: 14,425 ± 1,742) (p<0.01), cervical right rotation (T0: 14,200 ± 3,416 T1:13,750 ± 3,206) vs (T0: 14,900 ± 1,683 T1: 15,550 ± 2,188) (p<0.01), cervical left rotation (T0: 14,725 ±3,640 T1:14,450 ± 3,710) vs (T0: 15,900 ± 2,614 T1: 16,450 ± 2,964) (p<0.05), mouth disability at MHISS (T0: 19,100 ± 10,356 T1: 16,000 ± 9,989) vs (T0: 20,950 ± 9,950, T1: 21,100 ± 10,775) (p<0.01).Conclusion:The use of the home exercises protocol associated with the two devices has shown a significant improvement of the disability linked to skin involvement of the face. This highlights the fundamental role that home rehabilitation self therapy has in practice. These data will need to be confirmed in a larger cohort of patientsDisclosure of Interests:Mauro Passalacqua: None declared, Cristian Foggi: None declared, Nicola Mauro: None declared, Lorenzo Tofani: None declared, Serena Guiducci: None declared, Cosimo Bruni Speakers bureau: Actelion, Eli Lilly, Gemma Lepri: None declared, Jelena Blagojevic: None declared, Khadija El Aoufy: None declared, Ginevra Fiori: None declared, Francesca Bartoli: None declared, Susanna Maddali Bongi: None declared, Marco Mitola: None declared, Marco Gizduloch: None declared, Marco Matucci-Cerinic Grant/research support from: Actelion, MSD, Bristol-Myers Squibb, Speakers bureau: Acetelion, Lilly, Boehringer Ingelheim, Silvia Bellando Randone: None declared

Evaluation of side effects in cancer patients during oncological care: A project of the supportive care group of the tumor center Berlin

2009 ◽  
Vol 27 (15_suppl) ◽  
pp. e20715-e20715
Author(s):  
P. C. Feyer ◽  
U. Steiner ◽  
N. Bangemann ◽  
S. Kurz ◽  
C. Rudolph ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Side Effects ◽  
Cancer Patients ◽  
Treatment Protocol ◽  
Specific Treatment ◽  
Well Being ◽  
Care Group ◽  
Specific Therapy ◽  
Tumour Therapy

e20715 Background: The therapeutic options in tumour treatment protocols include a maximum of tumour cell reduction and at the same time a minimum of side effects in order to secure a good quality of life for the cancer patient. Temporary side effects have been accepted in relation to the benefit risk calculation. A questionnaire for cancer patients was developed to improve the management of side effects of the cancer treatment, to optimize the patient-doctor communication and to register individual problems of the patient. Methods: Cancer patients received a questionnaire with 25 items and were asked for their problems during or after the last tumour specific treatment before having the consultation with the doctor. Gender, age, Karnofsky-index and treatment protocol were additional registered. During September 2007 until December 2007 a total of 272 questionnaires could be collected. The qualitative items have been evaluated with the contigens table method and the parameter free x2 test (Chi-Square-Test). Results: More than 50% of the patients documented additional important points influencing their well being. Nearly all of the evaluated patients had some tumour therapy specific side effects. The most pronounced problem was the physical exhaustion in 71% of the evaluated patients. More than 50% were influenced in their quality of life by more than normal fatigue since the start of their tumour specific therapy. Significant differences could be evaluated in relation to the age, diagnosis and tumour therapy with respect to the symptoms. Conclusions: The questionnaire was be found to be a good method to improve the communication between the patient and the doctor. It was easier to point out individual problems for the patient. The care givers can focus more precisely on important side effects of the tumour specific therapy in order to improve the quality of life of the treated patient. No significant financial relationships to disclose.

Effect of Gastrointestinal Manifestations on Quality of Life in 87 Consecutive Patients with Systemic Sclerosis

2012 ◽  
Vol 39 (5) ◽  
pp. 992-996 ◽  
Author(s):  
MOHAMMED A. OMAIR ◽  
PETER LEE
Keyword(s):  
Quality Of Life ◽  
Systemic Sclerosis ◽  
Los Angeles ◽  
Well Being ◽  
Negative Influence ◽  
Channel Blockers ◽  
Current Therapies ◽  
Disease Subtypes ◽  
Individual Scores

Objective.To assess the effect of gastrointestinal (GI) manifestation on the quality of life in patients with systemic sclerosis (SSc).Methods.The University of California, Los Angeles Scleroderma Clinical Trial Consortium Gastrointestinal Tract 2 questionnaire was completed by 87 consecutive patients with SSc attending the scleroderma clinic at a single center. Their clinical features and current therapies were recorded; 100 patients with rheumatologic disorders other than SSc were used as controls. Individual scores were compared between SSc and controls, and between SSc subgroups.Results.Of 87 patients, 76 (90%) were women. Median age was 55 years and disease duration 105 months. Thirty-three (38%) had diffuse and 54 (62%) had limited SSc. Patients with SSc had a higher score than controls in all domains (p < 0.05). Numbers of patients who responded positively to individual questionnaire components are as follows: any GI symptom 86 (99%), reflux 77 (89%), distension 73 (84%), soilage 19 (22%), diarrhea 44 (51%), constipation 51 (59%), well-being 43 (49%), and social 43 (49%). There was no difference between the scores of patients with diffuse and limited disease subtypes. The use of calcium channel blockers did not significantly increase the constipation score (p = 0.99). Patients who responded positively to the reflux, distension, diarrhea, and constipation domains had lower scores in the well-being and social domains.Conclusion.GI manifestations, especially fecal incontinence (affecting 22% of patients), have a negative influence on the quality of life of patients with SSc. There was no difference between SSc disease subtypes.

Translation and Validation of the Facial Clinimetric Evaluation Scale to Spanish

2020 ◽  
pp. 019459982096962
Author(s):  
Leire Garcia-Iza ◽  
Carlos Miguel Chiesa-Estomba ◽  
Nuria Rosell-Romero ◽  
Eneritz Ibarguren-Esnal ◽  
Maria Soriano-Reixach ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Internal Consistency ◽  
Validation Study ◽  
Facial Palsy ◽  
Well Being ◽  
Pilot Test ◽  
Peripheral Facial Palsy ◽  
Face Scale ◽  
The Face

Objective Peripheral facial palsy is a disabling condition; thus, assessing its impact on quality of life is one of the greatest challenges within this discipline. The Facial Clinimetric Evaluation (FaCE) Scale has been validated for this purpose. The aim of this study is to translate and validate the Spanish version of the FaCE Scale. Study Design We performed a forward-backward translation of the original English FaCE Scale. A pilot test and a posterior prospective validation study were performed. Setting A pilot test and a posterior prospective validation study were conducted in a specialized facial palsy unit in a tertiary hospital. Methods A validation study was carried out in 85 patients to calculate the scale’s internal consistency and validity and to compare outcomes with the Sunnybrook Facial Grading System and the Facial Disability Index (FDI). Results Internal consistency was evaluated by Cronbach’s α coefficient, which showed a value of 0.841 (95% CI, 0.786-0.886). The total FaCE Scale score correlates well with the Sunnybrook, FDI physical function, and FDI social/well-being function scores: r = 0.773, r = 0.883, and r = 0.523, respectively. The FDI social/well-being function has the highest correlation with the FaCE Scale social function domain ( r = 0.595). Conclusion The Spanish version of the FaCE Scale demonstrated a high psychometric property that allows it to be used for clinical practice to assess the quality of life of Spanish-speaking patients with peripheral facial palsy.

scholarly journals Instrumentos de avaliação de qualidade de vida relacionada à saúde no diabetes melito

2008 ◽  
Vol 52 (6) ◽  
pp. 931-939 ◽  
Author(s):  
Carlos Clayton Torres Aguiar ◽  
Anya Pimentel G. Fernandes Vieira ◽  
André Ferrer Carvalho ◽  
Renan M. Montenegro-Junior
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Well Being ◽  
Impact Measurement ◽  
Measurement Scales ◽  
Sf 36 ◽  
Quality Of Life Scale ◽  
Life Scale ◽  
Patients With Diabetes

A avaliação da qualidade de vida (QV) vem se tornando cada vez mais utilizada para medir o impacto geral de doenças na vida dos indivíduos. O diabetes melito (DM) é uma doença crônica associada com morbimortalidade elevada e prejuízo na QV. Em estudos longitudinais, o impacto psicossocial da DM prediz a mortalidade nessa doença. Esta revisão busca descrever e analisar os principais instrumentos de avaliação da QV em pacientes com DM. Foram analisados instrumentos genéricos, como Quality of Well-Being Scale (QWB), The Medical Outcomes Study 36-item Short-Form Health Survey (SF-36) e EuroQol (EQ-5D), e instrumentos específicos, como Diabetes Care Profile (DCP), Diabetes Quality of Life Measure (DQOL), Diabetes Impact Measurement Scales (DIMS), Appraisal of Diabetes Scale (ADS), Audit of Diabetes-Dependent Quality of Life (ADDQoL), Diabetes Health Profile (DHP-1 e DHP-18), Questionnaire on Stress in Patients with Diabetes-Revised (QSD-R), Well-Being Enquiry for Diabetics (WED), Diabetes-Specific Quality-of-life Scale (DSQOLS), Diabetes 39 (D-39) e Problems Areas in Diabetes (PAID). O PAID é o único instrumento traduzido e validado para uso no Brasil. Tanto os instrumentos genéricos quanto os específicos têm vantagens e desvantagens na aferição da QV de pacientes com DM. O uso combinado de instrumentos genéricos (como o SF-36) e específicos (como o PAID) parece ser uma forma consistente de avaliação da QV em pacientes diabéticos no Brasil. O presente artigo revisa os vários instrumentos e enfatiza a necessidade urgente de estudos para validação desses instrumentos em pacientes diabéticos brasileiros.

scholarly journals Parameters of the internal picture of the disease and quality of life in patients with systemic lupus erythematosus

2020 ◽  
Vol 14 (3) ◽  
pp. 57-62
Author(s):  
V. M. Yaltonsky ◽  
I. N. Abrosimov ◽  
T. D. Andrushkevich ◽  
E. M. Shashurina ◽  
S. K. Solovyev ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Personal Control ◽  
Well Being ◽  
Systemic Lupus ◽  
Group 2 ◽  
Threat To Life ◽  
Group 1

Objective: to analyze the structural features of the internal picture of the disease (IPD in patients with systemic lupus erythematosus (SLE) and its ratio with quality of life (QOL) as an indicator of adaptation to the disease.Patients and methods. The investigation enrolled 51 patients with SLE. Comparison groups included patients differing in the psychological parameter – the perception of the existing disease as a threat to life and health: Group 1 (n=17) regarded their disease as a moderate threat to life and well-being; Group 2 (n=34) considered it as a severe threat.Results and discussion. Comparative analysis of the cognitive level of IPD revealed statistically significant differences between the patients of Groups 1 and 2 in the following scales: «course of the disease» (p<0.001), «personal control» (p<0.001), «treatment control» (p<0.001), «understandability of the disease» (p<0.001), «emotional response to the disease» (p<0.005), and «overall level of disease threats» (p<0.001). It turned out that Group 1 patients better understood the features of the course and manifestation of the disease, were more confident in the efficiency and importance of the treatment prescribed, as well as in their own capabilities to improve their health status. Group 2 patients were more inclined to try to cope with the existing negative experiences, by avoiding the problem.Conclusion. IPD can be different in patients with SLE. The perception of illness as a severe threat negatively affects the efficiency of therapy, mental well-being, social activity, and ultimately QOL. The findings can be used to develop programs for psychological support of patients with rheumatic diseases, in particular those with SLE.

Qualidade de vida na deficiência: o CrossFit adaptado para usuários de cadeiras de rodas e amputados

2020 ◽  
Vol 18 (3) ◽  
pp. 139-147
Author(s):  
Danielle Da Silva Pinheiro Wellichan ◽  
Marcella Garcia Ferreira dos Santos
Keyword(s):  
Quality Of Life ◽  
People With Disabilities ◽  
Well Being ◽  
Self Esteem ◽  
Wheelchair Users ◽  
The Face ◽  
The Individual ◽  
People With Physical Disabilities ◽  
The Universe

INTRODUÇÃO: A qualidade de vida de pessoas com deficiência está associada à condição de bem-estar, mesmo diante das condições limitadoras ou restritivas que possuem. Assim, o exercício físico adaptado requer a promoção de algumas estratégias de estimulação das capacidades e possui grande importância para o indivíduo, seja na descoberta de novas habilidades ou na reabilitação das funções.OBJETIVO: Ao adentrar no universo de um box de CrossFit, objetivou-se conhecer a prática oferecida para um grupo de pessoas com deficiências físicas (usuárias de cadeiras de rodas e amputados) a fim de identificar na prática os benefícios que podem apresentar enquanto exercício físico. MÉTODOS: Buscou-se na literatura especializada subsídios para a discussão e descrição dos resultados obtidos, por meio do acompanhamento de um grupo praticante da modalidade, com registros fotográficos dos treinos e relatos dos participantes.RESULTADOS: Foi notada a melhoria da autoestima dos participantes, a redescoberta de funções em indivíduos em fase de reabilitação física e a importância da socialização entre pessoas com e sem deficiências.CONCLUSÃO: Constatou-se o quanto a prática é válida para o grupo que busca melhor condicionamento, além de contribuir para aspectos psicológicos e sociais essenciais para a qualidade de vida e, consequentemente, para a convivência saudável das pessoas com deficiência no esporte e na sociedade.ABSTRACT. Quality of life in disabilities: CrossFit adapted for wheelchair users and amputees.BACKGROUND: The quality of life of people with disabilities is associated with the condition of well-being, even in the face of the limiting or restrictive conditions they have. Thus, adapted physical exercise requires the promotion of some strategies to stimulate capacities and has great importance for the individual, whether in the discovery of new skills or in the rehabilitation of functions.OBJECTIVE: When entering the universe of a CrossFit box, the objective was to get to know the practice offered to a group of people with physical disabilities (users of wheelchairs and amputees) in order to identify in practice the benefits they can present while exercising.METHODS: We sought in the specialized literature subsidies for the discussion and description of the results obtained, through the monitoring of a group practicing the sport, with photographic records of the training and reports of the participants. RESULTS: It was noted the improvement in self-esteem of participants, the rediscovery of functions in individuals in rehabilitation, and the importance of socialization between people with and without disabilities.CONCLUSION: It was found how valid the practice is for the group that seeks better conditioning, in addition to contributing to psychological and social aspects essential to the quality of life and, consequently, to the healthy coexistence of people with disabilities in sports and in society.

scholarly journals Quality of Life of Patients on Maintenance Hemodialysis in Relation to Hemoglobin Level: A Multicenter Study from a Developing Country

2017 ◽  
Vol 7 (3) ◽  
pp. 198-204
Author(s):  
Shudhanshu Kumar Saha ◽  
Mohammad Abul Masur ◽  
Sohel Reza Choudhury ◽  
Md Abdul Wahab Khan ◽  
Masud Iqbal ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Kidney Disease ◽  
Short Form ◽  
Well Being ◽  
Maintenance Hemodialysis ◽  
Group 3 ◽  
Group 2 ◽  
Esrd Patients ◽  
Group 1

Background: Anemia is common in patients with end stage renal disease (ESRD) and is associated with impaired quality of life (QOL). This study was done to evaluate the QOL of ESRD patients on maintenance hemodialysis (MHD) with different levels of hemoglobin (Hb).Methods: This cross-sectional study was conducted from January to December 2013 on 135 adult ESRD patients on MHD for ?4 months, at hemodialysis units of three tertiary care hospitals in Dhaka, Bangladesh. The patients were divided into three groups based on Hb levels (Group 1: Hb <9 gm/dl, n=45, 33%; Group 2: Hb 9-11 gm/dl, n=53, 39% and Group 3: Hb >11 gm/dl, n=37, 28%), provided their Hb levels were stable [ie. maintained with erythropoietin (EPO) or blood transfusion (BT) or both] over the previous four months. Subjects were interviewed by principal investigator using Kidney Disease Quality of Life Short Form Tool (KDQOL-SF-36 version 1.3) consisting of two domains with 38 questions with each item put on a 0 to 100 range, higher scores indicating better QOL.Results: The mean age was 50+12 years with male predominance (male:female = 1.5:1). Mean duration of hemodialysis was 12±11.8 months (range 9 to 66 months). The average QOL score was 50. Comparison of QOL parameters between the three groups showed that symptoms/problems, effects of kidney disease, burden of kidney disease, cognitive function, quality of social interaction and sleep in the kidney disease specific domain as well as pain, emotional well-being, social function and energy/fatigue scale scores in the general health related domain were significantly higher in the group 2 and group 3 than group 1 patients (each with p<0.001). Comparison of QOL parameters between anemia correction measures like EPO (n=65, 48.2%), BT (n=42, 31.1%) or both (n=28, 20.7%) showed that the group receiving EPO alone had better QOL [symptom/ problem (p 0.043), burden of kidney disease (p 0.000), sexual function (p 0.000), pain (p 0.008) and energy/ fatigue (p 0.036)] compared to those getting BT or even BT plus EPO.Conclusion: Patients were found to have better QOL with higher Hb levels. The overall QOL can be improved significantly by correction of anemia.Birdem Med J 2017; 7(3): 198-204

scholarly journals Meanings of quality of life for patients with facial melasma

2018 ◽  
Author(s):  
Camila Pollo ◽  
Luciane Miot ◽  
Hélio Miot ◽  
Silmara Meneguin
Keyword(s):  
Quality Of Life ◽  
Qualitative Research ◽  
Content Analysis ◽  
Public Hospital ◽  
Negative Impact ◽  
Well Being ◽  
The State ◽  
Private Clinic ◽  
The Face

Objective: To exhibit the meanings attributed to quality of life by patients with facial melasma. Methods: Qualitative research using the focal group technique, with 10 people with facial melasma from a public hospital and private clinic of a municipality in the interior of the state of São Paulo. The methodological indicative used was content analysis. Results: In the interviewees’ speech, one perceives the annoyance generated by the opinion of others, with curious and even malicious questions related to the blemish. There is difficulty to hide the injuries and the appearance of skin neglect is also cause for distress for the participants. Conclusion: Because it affects the face, which makes it easily visible, melasma is uncomfortable and has a negative impact on the quality of life, since it affects patients’ psychological and emotional well-being.

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