scholarly journals Health-related quality of life outcomes in pediatric patients with cardiac rhythm devices: a cross-sectional study with case-control comparison

2019 ◽  
Vol 17 (1) ◽  
Author(s):  
Helene Werner ◽  
Phaedra Lehmann ◽  
Alina Rüegg ◽  
Silvia Hilfiker ◽  
Karin Steinmann ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Health ◽  
Pediatric Patients ◽  
Healthy Controls ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Cardiac Medication ◽  
Disease Specific

Abstract Background Little is known about health-related quality of life (HRQoL) in pediatric patients with cardiac rhythm devices. This study aims to compare self- and proxy-reported HRQoL in patients with pacemaker (PM) and implantable cardioverter-defibrillator (ICD) to that in sex- and age-matched healthy controls and to examine predictors for generic and disease-specific HRQoL. Methods The study included 72 PM and ICD patients (39% females) and 72 sex- and age-matched healthy controls from 3 to 18 years of age. HRQoL data was obtained by the PedsQL 4.0 Generic Core Scales and Pediatric Cardiac Quality of Life Inventory. Medical data was collected retrospectively from medical records. Results Patients had significantly lower self- and proxy-reported generic overall HRQoL and lower physical health than healthy controls, and ICD patients also had lower psychosocial health. On multivariate analyses, generic overall HRQoL and physical health was significantly predicted by current cardiac medication (β = −.39, p = .02 for overall HRQoL, respectively β = −.44, p = .006 for physical health). Disease-specific overall HRQoL was only marginally predicted by child age, device type, and the presence of a structural congenital heart disease (p < .10). Conclusions This study shows that PM and ICD patients have lower HRQoL than healthy controls and that patients who need cardiac medication are seen by their parents at great risk for lower generic overall HRQoL. Our study also indicates a trend towards higher risk for low disease-specific HRQoL in younger patients, ICD patients, and patients with a structural congenital heart disease. Special attention should be given to these patients as they may benefit from a timely clinical evaluation in order to provide supportive interventions.

scholarly journals Protocol for a validation study of the translated stapesplasty outcome test 25 for measurement of disease-specific quality of life in Dutch patients with otosclerosis

BMJ Open ◽  
2019 ◽  
Vol 9 (12) ◽  
pp. e030219
Author(s):  
Esther E Blijleven ◽  
Hans G X M Thomeer ◽  
Robert Stokroos ◽  
Inge Wegner
Keyword(s):  
Quality Of Life ◽  
Stapes Surgery ◽  
Institutional Review Board ◽  
Healthy Controls ◽  
Health Related Quality ◽  
Institutional Review ◽  
Related Quality ◽  
Health Related ◽  
Disease Specific

IntroductionOtosclerosis is a common cause of acquired conductive hearing loss and can be treated using hearing aids or surgically. Surgical success rates or surgical results are usually reported using pure-tone audiometric thresholds and/or speech discrimination scores. Audiometric results and patient-reported quality of life after stapes surgery do not seem to correlate well. It is therefore our opinion that health-related quality of life measurements should be implemented as an additional outcome measure after stapes surgery. So far, there is a lack of a valid, reliable and clinically feasible measuring tool for determining health-related quality of life in Dutch patients with otosclerosis who undergo stapes surgery.Methods and analysisA prospective validation study was designed to translate and validate the disease-specific Stapesplasty Outcome Test 25 (SPOT-25) in a population of Dutch patients with otosclerosis who undergo primary stapes surgery. A total of 125 patients with otosclerosis who will be undergoing primary stapes surgery and 50 healthy controls will be included. The patients with otosclerosis will fulfil several questionnaires preoperatively, 6 to 8 weeks postoperatively and 8 to 10 weeks postoperatively with a 2-week interval between the postoperative administrations. The patients’ audiometric results, which are measured routinely before and after undergoing primary stapes surgery, will also be used. The healthy controls will fulfil the translated SPOT-25 once. First, the original SPOT-25 will be translated from German to Dutch in a six-step process. Second, the translated SPOT-25 will be pilot-tested in a subset of patients. Lastly, validity, reliability and responsiveness of the translated SPOT-25 will be analysed.Ethics and disseminationThe research protocol was approved by the Institutional Review Board of the University Medical Center Utrecht (protocol 18–768/C; V.1, November 2018). Initially, we planned to include 50 patients. At a later stage we decided to increase the sample size to 100 patients. We notified the Institutional Review Board of this change to the protocol. The trial results will be disseminated through peer-reviewed medical journals and presented at scientific conferences.Trial registration numberNL7586.

What is the effect of venous thromboembolism and related complications on patient reported health-related quality of life?

2016 ◽  
Vol 116 (09) ◽  
pp. 417-431 ◽  
Author(s):  
Nuno Rui Paulino Pereira ◽  
Christopher Kabrhel ◽  
David J. Kuter ◽  
Christopher W. DiGiovanni ◽  
Bart Lubberts
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Physical Health ◽  
Meta Analysis ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
One Year ◽  
Disease Specific

SummaryWe conducted a meta-analysis of the literature to 1) assess the health-related quality of life for patients with a minimum follow-up of one year after an episode of pulmonary embolism (PE) or deep-vein thrombosis (DVT), and 2) to assess the HRQOL for patients who develop chronic thromboembolic pulmonary hypertension (CTEPH) and post thrombotic syndrome (PTS). PubMed, EMBASE, and the Cochrane Library were searched from inception to March 30, 2016. Data were pooled using random-effects meta-analysis, and heterogeneity was assessed with I2 and Tau2 tests. SF-12, SF-36, and VEINES-QOL were evaluated with pooled standardised mean difference (SMD) and 95% confidence intervals (CI). Fourteen studies were included for meta-analysis. In patients who sustain a PE, physical health becomes impaired (p<0.001, 2 studies) but mental health appears to remain similar to population norms (p=0.069, 2 studies) after at least one year. Patients who develop CTEPH report worse physical (p<0.001, 1 study) and mental health (p=0.009, 1 study). In patients who suffer from a DVT, physical health (p=0.19, 9 studies), mental health (p=0.67, 9 studies), and disease specific quality of life (p=0.61, 8 studies) remain similar to population norms after at least one year. Patients who develop PTS, however, report worse physical health (p<0.001, 7 studies), mental health (p<0.001, 7 studies), and disease specific quality of life (p<0.001, 10 studies). These data can be used to educate patients during the shared decision making process that increasingly governs medical care today. Level of Evidence: II.Supplementary Material to this article is available online at www.thrombosis-online.com.

scholarly journals Explanatory Factors for Disease-Specific Health-Related Quality of Life in Women with Anorexia Nervosa

2021 ◽  
Vol 10 (8) ◽  
pp. 1592
Author(s):  
Laura Al-Dakhiel Winkler ◽  
Claire Gudex ◽  
Mia Beck Lichtenstein ◽  
Michael Ejnar Røder ◽  
Carol E. Adair ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Eating Disorder ◽  
Normal Weight ◽  
Health Related Quality ◽  
Explanatory Factors ◽  
Related Quality ◽  
Health Related ◽  
Disease Specific ◽  
Specific Health

A better understanding of explanatory factors for disease-specific health-related quality of life (HRQoL) in anorexia nervosa (AN) could help direct treatment providers to aspects of the most relevance for patient wellbeing and recovery. We aimed to investigate whether factors associated with HRQoL are the same for women with AN and normal-weight controls. The participants in this study were women with AN recruited from specialized eating disorder centers in Denmark and healthy, normal-weight controls invited via online social media. Participants completed online questionnaires on medical history, disease-specific HRQoL (Eating Disorders Quality of Life Scale, EDQLS) and generic HRQoL (SF-36), eating disorder symptomatology, depression, psychological wellbeing, and work and social adjustment. Questionnaires were fully completed by 211 women with AN (median age 21.7 years) and 199 controls (median age 23.9 years). Women with AN had poorer scores on all measures, i.e., worse HRQoL, psychological health, and work/social functioning. Eating disorder symptomatology affected EDQLS score in both groups, but poorer HRQoL in women with AN was also significantly associated with worse scores on bulimia, maturity fears, depression, vitality, and with older age. The factors investigated together explained 79% of the variance in EDQLS score. Management of disordered self-assessment and thought processes may be of particular importance to women with AN. Greater emphasis on these aspects alongside weight gain could enhance patient–clinician alliance and contribute to better treatment outcomes.

scholarly journals Randomized controlled study of the impact of a participatory patient care plan among primary care patients with common chronic diseases: a one-year follow-up study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Nina Tusa ◽  
Hannu Kautiainen ◽  
Pia Elfving ◽  
Sanna Sinikallio ◽  
Pekka Mäntyselkä
Keyword(s):  
Quality Of Life ◽  
Patient Care ◽  
Usual Care ◽  
Care Plan ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Disease Specific

Abstract Backround Chronic diseases and multimorbidity are common in the ageing population and affect the health related quality of life. Health care resources are limited and the continuity of care has to be assured. Therefore it is essential to find demonstrable tools for best treatment practices for patients with chronic diseases. Our aim was to study the influence of a participatory patient care plan on the health-related quality of life and disease specific outcomes related to diabetes, ischemic heart disease and hypertension. Methods The data of the present study were based on the Participatory Patient Care Planning in Primary Care. A total of 605 patients were recruited in the Siilinjärvi Health Center in the years 2017–2018 from those patients who were followed up due to the treatment of hypertension, ischemic heart disease or diabetes. Patients were randomized into usual care and intervention groups. The intervention consisted of a participatory patient care plan, which was formulated in collaboration with the patient and the nurse and the physician during the first health care visit. Health-related quality of life with the 15D instrument and the disease-specific outcomes of body mass index (BMI), low density lipoprotein cholesterol (LDL-C), hemoglobin A1c (HbA1C) and blood pressure were assessed at the baseline and after a one-year follow-up. Results A total of 587 patients with a mean age of 69 years were followed for 12 months. In the intervention group there were 289 patients (54% women) and in the usual care group there were 298 patients (50% women). During the follow-up there were no significant changes between the groups in health-related quality and disease-specific outcomes. Conclusions During the 12-month follow-up, no significant differences between the intervention and the usual care groups were detected, as the intervention and the usual care groups were already in good therapeutic equilibrium at the baseline. Trial registration ClinicalTrials.gov Identifier: NCT02992431. Registered 14/12/2016

scholarly journals Self-reported symptoms of arm lymphedema and health-related quality of life among female breast cancer survivors

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Kayo Togawa ◽  
Huiyan Ma ◽  
Ashley Wilder Smith ◽  
Marian L. Neuhouser ◽  
Stephanie M. George ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Physical Health ◽  
Analysis Of Covariance ◽  
Health Related Quality ◽  
Burning Pain ◽  
Related Quality ◽  
Health Related ◽  
Arm Lymphedema

AbstractWe examined cross-sectional associations between arm lymphedema symptoms and health-related quality of life (HRQoL) in the Health, Eating, Activity and Lifestyle (HEAL) Study. 499 women diagnosed with localized or regional breast cancer at ages 35–64 years completed a survey, on average 40 months after diagnosis, querying presence of lymphedema, nine lymphedema-related symptoms, e.g., tension, burning pain, mobility loss, and warmth/redness, and HRQoL. Analysis of covariance models were used to assess HRQoL scores in relation to presence of lymphedema and lymphedema-related symptoms. Lymphedema was self-reported by 137 women, of whom 98 were experiencing lymphedema at the time of the assessment. The most common symptoms were heaviness (52%), numbness (47%), and tightness (45%). Perceived physical health was worse for women reporting past or current lymphedema than those reporting no lymphedema (P-value < 0.0001). No difference was observed for perceived mental health (P-value = 0.31). Perceived physical health, stress, and lymphedema-specific HRQoL scores worsened as number of symptoms increased (P-values ≤ 0.01). Women reporting tension in the arm had lower physical health (P-value = 0.01), and those experiencing burning pain, tension, heaviness, or warmth/redness in the arm had lower lymphedema-specific HRQoL (P-values < 0.05). Treatment targeting specific lymphedema-related symptoms in addition to size/volume reduction may improve some aspects of HRQoL among affected women.

Factors Affecting Health-Related Quality of Life After the Arterial Switch Operation

2021 ◽  
Vol 12 (3) ◽  
pp. 344-351
Author(s):  
Julie Cleuziou ◽  
Anna-Katharina Huber ◽  
Martina Strbad ◽  
Masamichi Ono ◽  
Alfred Hager ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Arterial Switch Operation ◽  
Health Related Quality ◽  
Switch Operation ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related ◽  
Cardiac Medication

Background: Long-term morbidity and mortality outcomes of the arterial switch operation (ASO) in patients with transposition of the great arteries and Taussig-Bing anomaly are excellent. With an increasing number of patients reaching adolescence and adulthood, more attention is directed toward quality of life. Our study aimed to determine the health-related quality of life (hrQoL) outcomes in patients after the ASO and identify factors influencing their hrQoL. Methods: In this cross-sectional study, hrQoL of patients after ASO was assessed with the German version of the Short Form-36 (SF-36) and the potential association of specified clinical factors was analyzed. Patients of at least 14 years of age who underwent ASO in our institution from 1983 were considered eligible. Results: Of the 355 questionnaires sent to eligible patients, 261 (73%) were available for analysis. Compared to the reference population, patients who had undergone ASO had a significantly higher score in all subscales of the SF-36 except for vitality ( P < .01). Patients with an implanted pacemaker ( P = .002), patients who required at least one reoperation ( P < .001), and patients currently taking cardiac medication ( P < .004) or oral anticoagulation ( P = .036) had lower physical component scores compared to patients without these factors. Conclusions: Patients’ self-assessed and self-reported hrQoL after ASO (using German version of the Short Form 36) is very good. In this population, hrQoL is influenced by reoperation, the need for a pacemaker, and current cardiac medication or anticoagulant use. The development of strategies designed to mitigate or minimize the requirements for, and/or impact of these factors may lead to better hrQoL in this patient population.

The UFS-QOL, a New Disease-Specific Symptom and Health-Related Quality of Life Questionnaire for Leiomyomata

2002 ◽  
Vol 99 (2) ◽  
pp. 290-300 ◽  
Author(s):  
James B. Spies ◽  
Karin Coyne ◽  
Noureddine Guaou Guaou ◽  
Deneane Boyle ◽  
Kerry Skyrnarz-Murphy ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Life Questionnaire ◽  
New Disease ◽  
Health Related Quality ◽  
Specific Symptom ◽  
Quality Of Life Questionnaire ◽  
Related Quality ◽  
Health Related ◽  
Disease Specific
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