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

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.

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Impact of depression on quality of life in systemic lupus erythematosus patients

The Egyptian Journal of Neurology Psychiatry and Neurosurgery ◽

10.1186/s41983-021-00343-y ◽

2021 ◽

Vol 57 (1) ◽

Author(s):

Eman M. Khedr ◽

Rania M. Gamal ◽

Sounia M. Rashad ◽

Mary Yacoub ◽

Gellan K. Ahmed

Keyword(s):

Quality Of Life ◽

Systemic Lupus Erythematosus ◽

Lupus Erythematosus ◽

Short Form ◽

Systemic Lupus ◽

Positive Correlation ◽

Depressed Patients ◽

Sf 36 ◽

The Impact

Abstract Background Depression is common in systemic lupus erythematosus (SLE) and is an unmeasured risk factor, yet its symptoms can be neglected in standard disease evaluations. The purpose of this study was to assess the frequency and the impact of depression on quality of life in SLE patients. We recruited 32 patients with SLE and 15 healthy control volunteers in the study. The following investigations were undertaken in each patient: clinical and rheumatologic assessment, SLE Disease Activity Index-2k (SLEDAI-2k), Beck Depression Inventory (BDI), Short-Form Health Survey (SF-36) questionnaire, and routine laboratory tests. Results There was a high percentage of depression (46.9%) in the SLE patients. Regarding quality of life (SF-36), there were significant affection of the physical and mental composite summary domains (PCS and MCS) scores in lupus patients compared with controls (P < 0.000 for both) with the same significant in depressed compared with non-depressed patients. SF-36 subscales (physical function, limit emotional, emotional wellbeing, and social function) were significantly affected in depressed lupus patients compared with non-depressed patients. There was a significant negative correlation between the score of MCS domain of SF-36 with BDI (P < 0.000) while positive correlation between SLEDAI score with depression score. In contrast, there were no significant correlations between MCS or PCS with age, duration of illness, or SLEDAI-2K. Conclusions Depression is common in SLE patients and had a negative impact on quality of life particularly on MCS domain and positive correlation with disease severity score. Trial registration This study was registered on clinical trial with registration number: NCT03165682 https://clinicaltrials.gov/ct2/show/NCT03165682 on 24 May 2017.

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

Arquivos de Neuro-Psiquiatria ◽

10.1590/0004-282x20130045 ◽

2013 ◽

Vol 71 (6) ◽

pp. 392-396 ◽

Cited By ~ 2

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.

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The impact of smoking cessation on patient quality of life

Jornal Brasileiro de Pneumologia ◽

10.1590/s1806-37132009000500008 ◽

2009 ◽

Vol 35 (5) ◽

pp. 436-441 ◽

Cited By ~ 17

Author(s):

Maria Penha Uchoa Sales ◽

Maria Irenilza Oliveira ◽

Isabela Melo Mattos ◽

Cyntia Maria Sampaio Viana ◽

Eanes Delgado Barros Pereira

Keyword(s):

Quality Of Life ◽

Mental Health ◽

Smoking Cessation ◽

Short Form ◽

Analysis Of Covariance ◽

Sf 36 ◽

Related Quality ◽

A Prospective Study ◽

The Impact

OBJECTIVE: To evaluate changes in health-related quality of life (HRQoL) after twelve months of smoking cessation. METHODS: This was a prospective study to evaluate the effectiveness of a smoking cessation program on the quality of life of 60 self-referred subjects, at a public hospital, during the period of August 2006 to December 2007. The program consisted of 2-h group sessions once a week during the first month and then every 15 days over six months, followed by monthly phone contacts for another six months. The treatment was based on behavior modification and the use of bupropion in combination with nicotinic replacement therapy. Abstinence was verified by exhaled CO measurements. Patient HRQoL was quantified using the Medical Outcomes Study 36-item Short-Form Health Survey (SF-36) questionnaire. Differences in quality of life scores between quitters and non-quitters at twelve months after the initial intervention were evaluated using analysis of covariance with baseline characteristics as covariates. RESULTS: Self-reported quality of life scores were significantly higher among the 40 quitters than among the 20 non-quitters. The following SF-36 domains were most affected: role-emotional (p = 0.008); general health (p = 0.006); vitality (p < 0.001); and mental health (p = 0.002). At twelve months after the smoking cessation intervention, the SF-36 mental component and physical component summary scores were higher among quitters than among non-quitters (p = 0.004 and p = 0.001, respectively). CONCLUSIONS: Our findings illustrate that smoking abstinence is related to better HRQoL, especially in aspects of mental health.

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

Cephalalgia ◽

10.1111/j.1468-2982.2005.00985.x ◽

2006 ◽

Vol 26 (1) ◽

pp. 26-32 ◽

Cited By ~ 29

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.

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Patients' perspectives on the burden of recurrent genital herpes

International Journal of STD & AIDS ◽

10.1258/0956462011923859 ◽

2001 ◽

Vol 12 (10) ◽

pp. 640-645 ◽

Cited By ~ 35

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.

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AB0064 EVALUATION OF QUALITY OF LIFE IN RHEUMATOID ARTHRITIS USING SF-36 AND HAQ SCALES

Annals of the Rheumatic Diseases ◽

10.1136/annrheumdis-2021-eular.3309 ◽

2021 ◽

Vol 80 (Suppl 1) ◽

pp. 1063.1-1063

Author(s):

M. Brahem ◽

M. Hassayoun ◽

H. Hachfi ◽

R. Sarraj ◽

M. Ardhaoui ◽

...

Keyword(s):

Quality Of Life ◽

Rheumatoid Arthritis ◽

Disease Activity ◽

Short Form ◽

Bodily Pain ◽

Global Score ◽

Sf 36 ◽

The Mean ◽

The Impact

Background:The assessment of health-related quality-of-life (HRQoL) in rheumatoid arthritis (RA) is becoming a common tool in clinical practice. The medical outcomes survey short form 36 (SF- 36) is one of the most widely used tools for measuring HRQoL in RA as well as the HAQ scale.Objectives:The aim of our study is to evaluate the impact of the RA in the quality of life (QoL) of our patients using the SF-36 and the HAQ questionnaires.Methods:This is a cross-sectional study during a period of the year 2020, including 70 patients followed in the department of Rheumatology in Mahdia, Tunisia. All patients were diagnosed with RA based in ACR 1987/EULAR 2010. We evaluated for each patient, the mean global scale and the eight domains of SF-36 (physical functioning (PF), role physical (RP), bodily pain (BP), general health (GH), vitality (VT), a social functioning (SF), role emotional (RE) and mental health (MH)), scored from 0 (worst) to 100 (best).Results:Our study included 70 patients (59 females/11males) with an age ranged from 21 to 76 years. The mean age was 54 ± 12 years. The mean duration of the disease was 11 ± 10 years [1-40]. The mean number of tender joints was 9.7 ±9.4 and swollen joints were 4.2 ±6.1. The mean disease activity score (DAS28) was 4.6 ±1.9 [1.2-8.4]. The mean HAQ score was 1.5±1.3, 47.1% of patients had specific joint deformations, 82.9% had radiologic involvement and 31.4% had osteoporosis. The biologic analysis showed that the mean ESR was 46.7 ± 30.5 and the CRP was 15.8 ±23.3. Rheumatoid factors were positive in 42.9% of cases, the ACPA were positive in 50% of cases. 84.3% of RA patients were treated by methotrexate, 4.3% were treated by salazopyrin and 11.4% were treated by biologic treatments.The SF-36 global score was 50.4 ± 26.3 [15.3-92.8]. 46 patients (65.7% of cases) had impaired QoL (SF-36<66.7). The means of different domains (PF, RP, BP, GH, VT, SF, RE, MH) were respectively 51; 41.4; 51.4; 50; 51.2; 57.7; 41.9; 59.2. The most severely impacted domains were the RP and RE.Our study showed a significant correlation between the SF-36 global score and the number of tender joints (p=0.002), the DAS28 (p=0.017) and the HAQ(p=0.000).Conclusion:Our study showed that 65.7% of RA patients presented impaired QoL (SF-36<66.7), which is associated with high disease activity. So it’s important to jugulate the disease, in order to ameliorate the quality of life of our patients.References:[1]Matcham, F., Scott, IC, Rayner, L., Hotopf, M., Kingsley, GH, Norton, S.,… Steer, S. (2014). L’impact de la polyarthrite rhumatoïde sur la qualité de vie évalué à l’aide du SF-36: une revue systématique et une méta-analyse. Séminaires sur l’arthrite et les rhumatismes, 44 (2), 123-130. doi: 10.1016 / j.semarthrit.2014.05.001.Disclosure of Interests:None declared

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Health related quality of life in COVID-19 survivors discharged from acute hospitals: results of a short-form 36-item survey

F1000Research ◽

10.12688/f1000research.50781.1 ◽

2021 ◽

Vol 10 ◽

pp. 282

Author(s):

Alessia Saverino ◽

Eva Zsirai ◽

Raphael Sonabend ◽

Lorenza Gaggero ◽

Isabella Cevasco ◽

...

Keyword(s):

Quality Of Life ◽

Physical Functioning ◽

Short Form ◽

Health Related Quality ◽

Short Form 36 ◽

Sf 36 ◽

Related Quality ◽

Health Related ◽

The Impact

Background: Health-related quality of life (HRQL) is important for evaluating the impact of a disease in the longer term across the physical and psychological domains of human functioning. The aim of this study is to evaluate HRQL in COVID-19 survivors in Italy using the short form 36-items questionnaire (SF-36). Methods: This is an observational study involving adults discharged home following a coronavirus disease 2019 (COVID-19)-related hospital admission. Baseline demographic and clinical data including the Cumulative Illness Rating Scale (CIRS) and the Hospital Anxiety and Depression Scale (HADS) were collected. The validated Italian version of SF-36 was administered cross-sectionally. The SF-36 contains eight scales measuring limitations in physical and social functioning, the impact on roles and activities, fatigue, emotional well-being, pain and general health perception. Results: A total of 35 patients, with a mean age of 60 years, completed the SF-36. The results showed difficulties across the physical and psychological domains, particularly affecting the return to previous roles and activities. A higher burden of co-morbidities as well as a more severe muscle weakness was associated to a lower physical functioning. Younger age, rather than older, correlated to a perceived greater limitation in physical functioning and vitality. Conclusions: COVID-19 survivors particularly the ones of working age may need support for resuming their premorbid level of functioning and returning to work.

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Predictors of quality-of-life improvement following pulmonary resection due to lung cancer

Sao Paulo Medical Journal ◽

10.1590/s1516-31802007000100009 ◽

2007 ◽

Vol 125 (1) ◽

pp. 46-49 ◽

Cited By ~ 14

Author(s):

Ivete Alonso Bredda Saad ◽

Neury José Botega ◽

Ivan Felizardo Contrera Toro

Keyword(s):

Quality Of Life ◽

Lung Cancer ◽

Social Life ◽

Short Form ◽

Lung Resection ◽

Lung Cancer Diagnosis ◽

Sf 36 ◽

Life Improvement ◽

The Impact

CONTEXT AND OBJECTIVE: There is increasing involvement of health professionals in organizing protocols to determine the impact of lung surgery on functional state and activities of daily living, with the aim of improving quality of life (QoL). The objective of this study was to investigate predictors of QoL improvement among patients undergoing parenchyma resection due to lung cancer. DESIGN AND SETTING: Prospective study, at teaching hospital of Universidade Estadual de Campinas (Unicamp). METHODS: 36 patients with lung cancer diagnosis were assessed before surgery and on the 30th, 90th and 180th days after surgery. The Short-Form Health Survey (SF-36) was used as the dependent variable. The independent variables were the Hospital Anxiety and Depression (HAD) scale, a six-minute walking test (6-MWT), a visual analogue scale for pain, forced vital capacity (FVC), type of surgery and use of radiotherapy and chemotherapy. Generalized estimation equations (GEE) were utilized. RESULTS: The median age for these 20 men and 16 women was 55.5 ± 13.4 years. Both FVC and 6-MWT were predictors of improvement in the physical dimensions of QoL (p = 0.011 and 0.0003, respectively), as was smaller extent of surgical resection (p = 0.04). The social component of QoL had improved by the third postoperative month (p = 0.0005). CONCLUSION: The predictors that affected QoL positively were better FVC and 6-MWT results and less extensive lung resection. Three months after the surgery, an improvement in social life was already seen.

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Self-Reported Physical and Mental Health of Copd and Nsclc Caregivers: Relevance for Palliative Care Implementation in Serbia

10.21203/rs.3.rs-563449/v1 ◽

2021 ◽

Author(s):

Dragana Maric ◽

Dragana Jovanovic ◽

Ljudmila Nagorni Obradovic ◽

Tatjana Adzić Vukicevic ◽

Spasoje Popevic ◽

...

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Depressive Symptoms ◽

Physical Health ◽

Short Form ◽

Study Participant ◽

Sf 36 ◽

Significant Difference ◽

The Impact

Abstract The purpose: In context of forthcoming implementation of palliative care in Serbia we aimed to evaluate and compare the quality of life (QoL) and depressive symptoms level of chronic obstructive pulmonary disease (COPD) and non-small cell lung cancer (NSCLC) caregivers and to analyze the impact of demographic and socioeconomic factors as well as the correlation of patients' quality of life with the quality of life of caregivers.Methods: A cross-sectional survey of 200 caregivers and the patients they care for was undertaken in a three-year period. The Medical Outcomes 36-item Short Form Health Survey (SF-36) (Serbian version) was used to measure caregivers and patient’s health-related quality of life and Standard 21-item Beck Depression Inventory (BDI) was given to each study participant (patient and caregiver) in order to explore feelings and attitudes relating to general depressive status. Data were analyzed using appropriate statistical methods.Results of our study did not show a significant difference in most QoL domains and depressive symptoms of the two caregiver groups, but it did show a difference in the domain of general health (GH) and physical health (PHC) measured by the SF-36 (p=0.003 and p=0,038, respectively) in COPD caregivers. Conclusion: Particularly vulnerable caregiver group, the one that cared for patients with COPD, perceived their own general and physical health significantly worse compared to NSCLC caregivers. More depressed caregivers and those with a longer duration of unemployment (regardless of the disease type) reported poorer quality of life and represented a groups with greater support needs.

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Quality of life is decreased in female patients treated for microprolactinoma

Acta Endocrinologica ◽

10.1530/eje-07-0259 ◽

2007 ◽

Vol 157 (2) ◽

pp. 133-139 ◽

Cited By ~ 29

Author(s):

M Kars ◽

A A van der Klaauw ◽

C S Onstein ◽

A M Pereira ◽

J A Romijn

Keyword(s):

Quality Of Life ◽

Short Form ◽

Nottingham Health Profile ◽

Depression Scale ◽

Well Being ◽

Anxiety And Depression ◽

Female Patients ◽

Sf 36 ◽

The Impact

Objective: Most studies on treatment of microprolactinoma have focused on clinical and biochemical outcome rather than on functional and mental well-being. We evaluated this topic in female patients with microprolactinoma, because other pituitary adenomas are associated with decreased quality of life. Design: We conducted a cross-sectional study. Patients and methods: To assess the impact of treatment for microprolactinoma on subjective well-being, quality of life was investigated in 55 female patients (mean age 45 ± 10 years), treated for microprolactinoma in our center, using four validated, health-related questionnaires: Short-Form-36 (SF-36), Nottingham Health Profile (NHP), Multidimensional Fatigue Inventory (MFI-20), and Hospital Anxiety and Depression Scale (HADS). Patient outcomes were compared with those of 183 female controls with equal age distributions. Results: Anxiety and depression scores were increased when compared with controls for all subscales as measured by HADS, and fatigue for all but one subscale as measured by MFI-20. Patients treated for microprolactinoma had worse scores on social functioning, role limitations due to physical problems (SF-36), energy, emotional reaction, and social isolation (NHP) when compared with control subjects. Important independent predictors of quality of life were reproductive status and anxiety and depression scores according to the HADS. Conclusion: Quality of life is impaired in female patients treated for microprolactinoma, especially due to increased anxiety and depression. These increased anxious and depressive feelings might be due to possible effects of hyperprolactinemia on the central nervous system. Failure to recognize this association may adversely affect patient–doctor relationships.

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