scholarly journals Quality of life in patients with Charcot-Marie-Tooth disease type 1A

2013 ◽  
Vol 71 (6) ◽  
pp. 392-396 ◽  
Author(s):  
Juliana B. Taniguchi ◽  
Valeria M.C. Elui ◽  
Flavia L. Osorio ◽  
Jaime E.C. Hallak ◽  
Jose A.S. Crippa ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Control Group ◽  
Life Questionnaire ◽  
Charcot Marie Tooth ◽  
Social And Emotional ◽  
Charcot Marie Tooth Disease ◽  
Sf 36 ◽  
And Gender

We assessed the functional impairment in Charcot-Marie-Tooth resulting from 17p11.2-p12 duplication (CMT1A) patients using the Short-Form Health Survey (SF-36), which is a quality of life questionnaire. Twenty-five patients of both genders aged ≥10 years with a positive molecular diagnosis of CMT1A were selected. Age- and gender-matched Control Group (without family history of neuropathy), and the sociodemographic and professional conditions similar to the patients' group were selected to compare the SF-36 results between them. The results showed that the majority quality of life impairments in CMT1A patients occurred in the social and emotional domains. Functional capacity also tended to be significantly affected; other indicators of physical impairment were preserved. In conclusion, social and emotional aspects are mostly neglected in the assistance provided to CMT1A Brazilian patients, and they should be better understood in order to offer global health assistance with adequate quality of life as a result.

Translation and Validation of the Thai Version of the Wisconsin Quality of Life Questionnaire (TH WISQoL) for Kidney Stone Patients

2020 ◽  
Vol 103 (11) ◽  
pp. 1194-1199
Keyword(s):  
Quality Of Life ◽  
Internal Consistency ◽  
Kidney Stone ◽  
Convergent Validity ◽  
Large Scale ◽  
Short Form ◽  
Outcome Measurement ◽  
Life Questionnaire ◽  
Sf 36

Objective: To develop and validate a Thai version of the Wisconsin Quality of Life (TH WISQoL) Questionnaire. Materials and Methods: The authors developed the TH WISQoL Questionnaire based on a standard multi-step process. Subsequently, the authors recruited patients with kidney stone and requested them to complete the TH WISQoL and a validated Thai version of the 36-Item Short Form Survey (TH SF-36). The authors calculated the internal consistency and interdomain correlation of TH WISQoL and compared the convergent validity between the two instruments. Results: Thirty kidney stone patients completed the TH WISQoL and the TH SF-36. The TH WISQoL showed acceptable internal consistency for all domains (Cronbach’s alpha 0.768 to 0.909). Interdomain correlation was high for most domains (r=0.698 to 0.779), except for the correlation between Vitality and Disease domains, which showed a moderate correlation (r=0.575). For convergent validity, TH WISQoL demonstrated a good overall correlation to TH SF-36, (r=0.796, p<0.05). Conclusion: The TH WISQoL is valid and reliable for evaluating the quality of life of Thai patients with kidney stone. A further large-scale multi-center study is warranted to confirm its applicability in Thailand. Keywords: Quality of life, Kidney stone, Validation, Outcome measurement

scholarly journals The impact of symptoms on daily life as perceived by patients with Charcot-Marie-Tooth type 1A disease

2021 ◽  
Author(s):  
Stefano Tozza ◽  
Dario Bruzzese ◽  
Daniele Severi ◽  
Emanuele Spina ◽  
Rosa Iodice ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Daily Life ◽  
Short Form ◽  
Lower Limbs ◽  
Charcot Marie Tooth ◽  
Rank Analysis ◽  
Sf 36 ◽  
Tooth Type ◽  
The Impact

Abstract Introduction In Charcot-Marie-Tooth type 1A (CMT1A) patients, daily life is mainly influenced by mobility and ambulation dysfunctions. The aim of our work was to evaluate the perception of disturbances that mostly impact on daily life in CMT1A patients and its difference on the basis of age, gender, disability, and quality of life. Methods Forty-one CMT1A patients underwent neurological assessment focused on establishing clinical disability through the Charcot-Marie-Tooth Neuropathy Score (CMTNS) and quality of life through the Short Form-36 (SF-36) questionnaire. We identified from CMT disturbances 5 categories [weakness in lower limbs (WLL), weakness in upper limbs (WUL), skeletal deformities (SD), sensory symptoms (SS), balance (B)] and patients classified the categories from the highest to the lowest impact on daily life (1: highest; 5: lowest). Ranking of the 5 categories, in the overall sample and in the different subgroups (dividing by gender, median of age and disease duration, CMTNS, domains of SF-36), was obtained and differences among subgroups were assessed using a bootstrap approach. Results Rank analysis showed that WLL was the most important disturbance on daily life whereas WUL had the lowest impact. In the older CMT1A group, the most important disturbance on daily life was B that was also the most relevant disturbance in patients with a greater disability. SD influenced daily life in younger patients. SS had less impact on daily life, with the exception of patients with a milder disability. Discussion Our findings demonstrated that the perception of disturbances that mostly impact on CMT1A patients’ daily life changes over the lifetime and with degree of disability.

scholarly journals Observational non-randomised controlled evaluation of the effectiveness of cancer counselling centres: a study protocol

BMJ Open ◽  
2019 ◽  
Vol 9 (12) ◽  
pp. e032889
Author(s):  
Solveigh Paola Lingens ◽  
Georgia Schilling ◽  
Julia Harms ◽  
Holger Schulz ◽  
Christiane Bleich
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Control Group ◽  
Life Questionnaire ◽  
Psychosocial Variables ◽  
European Organization ◽  
Psychological Burden ◽  
Patients With Cancer ◽  
Small Effect Size

IntroductionIn recent years, medical treatment for cancer has improved, thereby increasing the life expectancy of patients with cancer. Hence, the focus in healthcare shifted towards analysing treatments that offer to decrease distress and improve the quality of life of patients with cancer. The psychological burden of patients with cancer originates from all kinds of psychosocial challenges related to diagnosis and treatment. Cancer counselling centres (CCounCs) try to address these concerns. However, the current literature lacks research on the effectiveness of CCounCs. This study aims to assess the effectiveness of CCounCs with regard to distress and other relevant psychosocial variables (quality of life, anxietyand so on).Methods and analysisThis prospective observational study with a non-randomised control group has three measurement points: before the first counselling session (baseline, t0) and at 2 weeks and 3 months after baseline (t1, t2). Patients and their relatives who seek counselling between December 2018 and November 2020 and have sufficient German language skills will be included. The control group will be recruited at clinics and oncological outpatient centres in Hamburg. Propensity scoring will be applied to adjust for differences between the control and intervention groups at baseline. Sociodemographic data, medical data and counselling concerns are measured at baseline. Distress (distress thermometer), quality of life (Short Form-8 Health Survey, European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire-Core 30), anxiety (Generalized AnxietyDisorder-7), depression (Patient HealthQuestionnaire-9) and further psychosocial variables are assessed at all time points. With a total of 787 participants, differences between the intervention and control groups of a small effect size (f=0.10) can be detected with a power of 80%.Ethics and disseminationThe study was registered prior to data collection with the German Registration of Clinical Trials in September 2018. Ethical approval was received by the local psychological ethical committee of the Center for Psychosocial Medicine at the University Medical Centre Hamburg-Eppendorf in August 2018. The results will be published in peer-reviewed journals.Trial registration numberDRKS00015516; Pre-results.

Comorbid Migraine is Associated with a Negative Impact on Quality of Life in Patients with Major Depression

Cephalalgia ◽  
2006 ◽  
Vol 26 (1) ◽  
pp. 26-32 ◽  
Author(s):  
C-I Hung ◽  
C-Y Liu ◽  
J-L Fuh ◽  
Y-Y Juang ◽  
S-J Wang
Keyword(s):  
Quality Of Life ◽  
Negative Impact ◽  
Short Form ◽  
Physical Symptom ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related ◽  
And Gender ◽  
The Impact

This study investigated the impact of migraine on health-related quality of life (HRQoL) among patients with major depressive disorder (MDD). We prospectively enrolled 151 consecutive psychiatric out-patients meeting DSM-IV criteria for MDD. Migraine and other headache types were diagnosed based on the International Classification of Headache Disorders, 2nd edition (2004). The Short Form-36 (SF-36) was administered as a generic instrument of HRQoL. Among 151 patients with MDD, migraine ( N = 73, 48.3%) was very common. Comorbidity of migraine predicted a significantly negative impact on all physical subscales and vitality but not on the other mental subscales of the SF-36 after controlling for depression, age and gender. The presence of migraine should be considered as an important physical symptom in clinic-based MDD samples. Simultaneous management of depression and severe headaches, especially migraine, might improve HRQoL in patients with MDD.

Validation of the Multiple Sclerosis International Quality of Life questionnaire

2007 ◽  
Vol 14 (2) ◽  
pp. 219-230 ◽  
Author(s):  
MC Simeoni ◽  
P. Auquier ◽  
O. Fernandez ◽  
P. Flachenecker ◽  
S. Stecchi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Internal Consistency ◽  
Discriminant Validity ◽  
Short Form ◽  
Life Questionnaire ◽  
Validity And Reliability ◽  
Sf 36 ◽  
Quality Of Life Scale

This study aims to validate the Multiple Sclerosis (MS) International Quality of Life (MusiQoL) questionnaire, a multi-dimensional, self-administered questionnaire, available in 14 languages, as a disease-specific quality of life scale that can be applied internationally. A total of 1992 patients with different types and severities of MS from 15 countries were recruited. At baseline and day 21 ± 7, each patient completed the MusiQoL, a symptom checklist and the short-form (SF)-36 QoL questionnaire. Neurologists also collected socio-demographic, MS history and outcome data. The database was randomly divided into two subgroups and analysed according to different patient characteristics. For each model, psychometric properties were tested and the number of items was reduced by various statistical methods. Construct validity, internal consistency, reproducibility and external consistency were also tested. Nine dimensions, explaining 71% of the total variance, were isolated. Internal consistency and reproducibility were satisfactory for all the dimensions. External validity testing revealed that dimension scores correlated significantly with all SF-36 scores, but showed discriminant validity by gender, socio-economic and health status. Significant correlations were found between activity in daily life scores and clinical indices. These results demonstrate the validity and reliability of the MusiQoL as an international scale to evaluate QoL in patients with MS. Multiple Sclerosis 2008; 14: 219—230. http://msj.sagepub.com

scholarly journals Long-term quality of life in patients with vestibular schwannoma: an international multicenter cross-sectional study comparing microsurgery, stereotactic radiosurgery, observation, and nontumor controls

2015 ◽  
Vol 122 (4) ◽  
pp. 833-842 ◽  
Author(s):  
Matthew L. Carlson ◽  
Oystein Vesterli Tveiten ◽  
Colin L. Driscoll ◽  
Frederik K. Goplen ◽  
Brian A. Neff ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Stereotactic Radiosurgery ◽  
Short Form ◽  
Individual Treatment ◽  
Control Group ◽  
Treatment Groups ◽  
Sf 36 ◽  
Disease Specific

OBJECT The optimal treatment for sporadic vestibular schwannoma (VS) is highly controversial. To date, the majority of studies comparing treatment modalities have focused on a narrow scope of technical outcomes including facial function, hearing status, and tumor control. Very few publications have investigated health-related quality of life (HRQOL) differences between individual treatment groups, and none have used a disease-specific HRQOL instrument. METHODS All patients with sporadic small- to medium-sized VSs who underwent primary microsurgery, stereotactic radiosurgery (SRS), or observation between 1998 and 2008 were identified. Subjects were surveyed via postal questionnaire using the 36-Item Short Form Health Survey (SF-36), the 10-item Patient-Reported Outcomes Measurement Information System short form (PROMIS-10), the Glasgow Benefit Inventory (GBI), and the Penn Acoustic Neuroma Quality-of-Life (PANQOL) scale. Additionally, a pool of general population adults was surveyed, providing a nontumor control group for comparison. RESULTS A total of 642 respondents were analyzed. The overall response rate for patients with VS was 79%, and the mean time interval between treatment and survey was 7.7 years. Using multivariate regression, there were no statistically significant differences between management groups with respect to the PROMIS-10 physical or mental health dimensions, the SF-36 Physical or Mental Component Summary scores, or the PANQOL general, anxiety, hearing, or energy subdomains. Patients who underwent SRS or observation reported a better total PANQOL score and higher PANQOL facial, balance, and pain subdomain scores than the microsurgical cohort (p < 0.02). The differences in scores between the nontumor control group and patients with VS were greater than differences observed between individual treatment groups for the majority of measures. CONCLUSIONS The differences in HRQOL outcomes following SRS, observation, and microsurgery for VS are small. Notably, the diagnosis of VS rather than treatment strategy most significantly impacts quality of life. Understanding that a large number of VSs do not grow following discovery, and that intervention does not confer a long-term HRQOL advantage, small- and medium-sized VS should be initially observed, while intervention should be reserved for patients with unequivocal tumor growth or intractable symptoms that are amenable to treatment. Future studies assessing HRQOL in VS patients should prioritize use of validated disease-specific measures, such as the PANQOL, given the significant limitations of generic instruments in distinguishing between treatment groups and tumor versus nontumor subjects.

scholarly journals Quality of Life in MAP.3 (Mammary Prevention 3): A Randomized, Placebo-Controlled Trial Evaluating Exemestane for Prevention of Breast Cancer

2014 ◽  
Vol 32 (14) ◽  
pp. 1427-1436 ◽  
Author(s):  
Elizabeth Maunsell ◽  
Paul E. Goss ◽  
Rowan T. Chlebowski ◽  
James N. Ingle ◽  
José E. Alés-Martínez ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Postmenopausal Women ◽  
Short Form ◽  
Change Score ◽  
Life Questionnaire ◽  
Sf 36 ◽  
Health Related Qol ◽  
Health Related

Purpose Exemestane, a steroidal aromatase inhibitor, reduced invasive breast cancer incidence by 65% among 4,560 postmenopausal women randomly assigned to exemestane (25 mg per day) compared with placebo in the National Cancer Institute of Canada (NCIC) Clinical Trials Group MAP.3 (Mammary Prevention 3) trial, but effects on quality of life (QOL) were not fully described. Patients and Methods Menopause-specific and health-related QOL were assessed by using the four Menopause-Specific Quality of Life Questionnaire (MENQOL) domains and the eight Medical Outcomes Study Short Form Health Survey (SF-36) scales at baseline, 6 months, and yearly thereafter. MENQOL questionnaire completion was high (88% to 98%) in both groups at each follow-up visit. Change scores for each MENQOL and SF-36 scale, calculated at each assessment time relative to baseline, were compared by using the Wilcoxon rank-sum test. Clinically important worsened QOL was defined as a MENQOL change score increase of more than 0.5 (of 8) points and an SF-36 change score decrease of more than 5 (of 100) points from baseline. Results Exemestane had small negative effects on women's self-reported vasomotor symptoms, sexual symptoms, and pain, which occurred mainly in the first 6 months to 2 years after random assignment. However, these changes represented only a small excess number of women being given exemestane with clinically important worsening of QOL at one time or another; specifically, 8% more in the vasomotor domain and 4% more each in the sexual domain and for pain. No other between-group differences were observed. Overall, slightly more women in the exemestane arm (32%) than in the placebo arm (28%) discontinued assigned treatment. Conclusion Exemestane given for prevention has limited negative impact on menopause-specific and health-related QOL in healthy postmenopausal women at risk for breast cancer.

scholarly journals The role of folded fibular flap in patients’ reconstruction of mandibular defects: a retrospective clinical study

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Ning Gao ◽  
Kun Fu ◽  
Jinghua Cai ◽  
Hao Chen ◽  
Wei He
Keyword(s):  
Quality Of Life ◽  
Psychological Health ◽  
Short Form ◽  
Life Questionnaire ◽  
Preoperative Level ◽  
Sf 36 ◽  
Retrospective Clinical Study ◽  
Significant Difference ◽  
Fibular Flap

AbstractThis study has analyzed 41 patients with mandibular ameloblastoma who underwent a partial mandibulectomy and reconstruction by folding the free fibular flap. In the preoperative and postoperative (6 months and 24 months after surgery), the Quality of Life (QOL) of these patients was assessed by using the University of Washington Quality of Life Questionnaire (UW-QOL) and the medical outcome study short form-36 (SF-36) questionnaires. SPSS 20.0 statistical software was used to conduct statistical analysis on the base data of the two groups of patients. Independent sample t test was conducted for sf-36 and UW-QOL scores at two time points in each group. The SF-36 survey showed that body pain (54.54 ± 8.10), general health (55.27 ± 7.54), and health changes (58.29 ± 9.60) decreased significantly at 6 months after surgery, but the mean score at 24 months after surgery all exceeded the preoperational level. At 24 months after the surgery, the vitality (80.41 ± 3.74), social function (81.61 ± 4.07), emotional role (82.39 ± 4.07), psychological health (81.66 ± 4.37) and total score (704.00 ± 31.53) all returned to the preoperative level, which was statistically significant compared with 6 months after surgery. However, there was no significant difference compared with the preoperative level. The UW-QOL survey showed that chewing (56.68 ± 7.23), speech (54.54 ± 7.7) and taste (62.29 ± 10.15) have significantly changed at 6 months after the surgery, and the difference was statistically significant at 24 months after surgery. Saliva generation decreased slightly (80.76 ± 3.35) at 6 months after surgery, but quickly returned to the preoperative level (81.59 ± 4.06). The total score of the patients almost recovered to the preoperative level at 24 months after surgery. The folded the fibular flap can not only repair the defects of soft tissue and bone tissue, but also restore the height of the alveolar ridge to, avoid the imbalance of crown and root ratio after implantation and reduce the occurrence of peri-implant inflammation, so that a true functional reconstruction can be realized.

Patients' perspectives on the burden of recurrent genital herpes

2001 ◽  
Vol 12 (10) ◽  
pp. 640-645 ◽  
Author(s):  
R Patel ◽  
F Boselli ◽  
I Cairo ◽  
G Barnett ◽  
M Price ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Genital Herpes ◽  
Short Form ◽  
Normal Population ◽  
Life Questionnaire ◽  
Recurrent Genital Herpes ◽  
Workplace Productivity ◽  
Sf 36 ◽  
The Impact

The purpose of this study was to quantify the impact of recurrent genital herpes (RGH) on health-related quality of life, healthcare resource and workplace productivity. This was a cross-sectional survey conducted in 5 countries (Australia, Denmark, Italy, The Netherlands and UK). Patients with a confirmed history of RGH completed the MOS 36-Item Short Form Health Survey (SF-36) and the Recurrent Genital Herpes Quality of Life questionnaire (RGHQoL). Questionnaires addressing frequency of access to healthcare services and workplace productivity were also completed and patients' medical history was obtained. Scores for 6 of the 8 domains of the SF-36 were significantly lower ( P<0.001) i.e. worse, compared with scores for the normal population. The RGHQoL score was significantly lower in patients experiencing more frequent or more severe recurrences. Forty-five per cent of patients estimated that their work effectiveness was reduced by between 25% and 50% due to genital herpes symptoms.

scholarly journals Urinary incontinence in the puerperium and its impact on the health-related quality of life

2012 ◽  
Vol 20 (2) ◽  
pp. 346-353 ◽  
Author(s):  
Lígia da Silva Leroy ◽  
Maria Helena Baena de Moraes Lopes
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Short Form ◽  
Control Group ◽  
Case Group ◽  
Health Related Quality ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related

This case-control study evaluated whether UI in the puerperium compromises the health-related quality of life (HRQoL) and if so, in which aspects. The study included 344 women (77 case group and 267 control group) up to 90 days postpartum, who were attended the Obstetrics Outpatient Clinic of a public teaching hospital, for the postpartum follow up consultation. A socio-demographic and clinical data questionnaire formulated and validated for the study, the International Consultation on Incontinence Questionnaire - Short-Form (ICIQ-SF), the King's Health Questionnaire (KHQ) and the Medical Outcomes Study 36 - Item Short Form Health Survey (SF-36), were applied. The mean score of the ICIQ-SF was 13.9 (SD: 3.7). The case group presented high mean scores in the domains Impact of the Incontinence, Emotions, Daily Activity Limitations and Physical Limitations, of the KHQ. The groups differed significantly in the domains Physical Aspects, Pain, General Health Status, Vitality, Social Aspects and Mental Health of the SF-36. It is concluded that UI significantly affects the physical and mental health of puerperae.

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