scholarly journals Health impact of acute intermittent porphyria in latent and non-recurrent attacks patients

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Juan Buendía-Martínez ◽  
María Barreda-Sánchez ◽  
Lidya Rodríguez-Peña ◽  
María Juliana Ballesta-Martínez ◽  
Vanesa López-González ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Acute Intermittent Porphyria ◽  
Abdominal Ultrasound ◽  
Health Impact ◽  
Symptomatic Disease ◽  
Related Quality ◽  
Biochemical Analyses ◽  
The Impact

Abstract Background Acute intermittent porphyria (AIP) is a genetic disease characterized by acute neurovisceral attacks. Long-term clinical conditions, chronic symptoms and impaired health related quality of life (HRQoL) have been reported during non-attack periods but mainly in patients with recurrent attacks. Our aim was to investigate these aspects in sporadic AIP (SA-AIP) and latent AIP (L-AIP) patients. Fifty-five participants, 27 SA-AIP (< 4 attacks/year) and 28 L-AIP patients with a prevalent founder mutation from Spain were included. Medical records were reviewed, and individual interviews, physical examinations, biochemical analyses, and abdominal ultrasound scans were conducted. HRQoL was assessed through an EQ-5D-5L questionnaire. A comparative study was made between SA-AIP and L-AIP patients. Results The earliest long-term clinical condition associated with SA-AIP was chronic kidney disease. Chronic symptoms were reported in 85.2 % of SA-AIP and 46.4 % of L-AIP patients. Unspecific abdominal pain, fatigue, muscle pain and insomnia were significantly more frequent in SA-AIP than in L-AIP patients. The EQ-5D-5L index was lower in SA-AIP (0.809 vs. 0.926, p = 0.0497), and the impact of “pain”, “anxiety-depression” and “mobility” was more intense in the EQ-5D-5L domains in SA-AIP than in L-AIP subjects and the general Spanish population. Conclusions AIP remains a chronically symptomatic disease that adversely affects health and quality of life, even in patients with low rate of acute attacks. We suggest a regular monitoring of patients with symptomatic AIP regardless of their attack rate or the time since their last attack, with proper pain management and careful attention to kidney function.

scholarly journals The impact of lymphedema on health-related quality of life up to 10 years after breast cancer treatment

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Mads G. Jørgensen ◽  
Navid M. Toyserkani ◽  
Frederik G. Hansen ◽  
Anette Bygum ◽  
Jens A. Sørensen
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Cancer Treatment ◽  
Breast Cancer Treatment ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

AbstractThe impact of breast cancer-related lymphedema (BCRL) on long-term quality of life is unknown. The aim of this study was to investigate the impact of BCRL on health-related quality of life (HRQoL) up to 10 years after breast cancer treatment. This regional population-based study enrolled patients treated for breast cancer with axillary lymph node dissection between January 1st 2007 and December 31th 2017. Follow up and assessments of the included patients were conducted between January 2019 and May 2020. The study outcome was HRQoL, evaluated with the Lymphedema Functioning, Disability and Health Questionnaire, the Disabilities of the Arm, Shoulder and Hand Questionnaire and the Short Form (36) Health Survey Questionnaire. Multivariate linear logistic regression models adjusted for confounders provided mean score differences (MDs) with 95% confidence intervals in each HRQoL scale and item. This study enrolled 244 patients with BCRL and 823 patients without BCRL. Patients with BCRL had significantly poorer HRQoL than patients without BCRL in 16 out of 18 HRQoL subscales, for example, in physical function (MDs 27, 95%CI: 24; 30), mental health (MDs 24, 95%CI: 21; 27) and social role functioning (MDs 20, 95%CI: 17; 23). Age, BMI, BCRL severity, hand and dominant arm affection had only minor impact on HRQoL (MDs < 5), suggesting a high degree of inter-individual variation in coping with lymphedema. This study showed that BCRL is associated with long-term impairments in HRQoL, especially affecting the physical and psychosocial domains. Surprisingly, BCRL diagnosis rather than clinical severity drove the largest impairments in HRQoL.

Impact of type I Boston keratoprosthesis implantation on vision-related quality of life

2017 ◽  
Vol 102 (7) ◽  
pp. 878-881 ◽  
Author(s):  
Marcus Ang ◽  
Ryan Man ◽  
Eva Fenwick ◽  
Ecosse Lamoureux ◽  
Mark Wilkins
Keyword(s):  
Quality Of Life ◽  
Effect Size ◽  
Retention Rate ◽  
Well Being ◽  
Type I ◽  
Boston Keratoprosthesis ◽  
Related Quality ◽  
The Impact

AimTo determine the impact of type I Boston keratoprosthesis (KPro) implantation on vision-related quality of life (VRQoL).MethodsProspective study in 33 patients (mean age 56±12 years, 67% male) with bilateral corneal blindness, who underwent a KPro implantation at a single tertiary eye hospital (June 2011–July 2015). VRQoL was evaluated using the Impact of Vision Impairment Questionnaire (IVI) at baseline and at 3–6 months postsurgery, after stabilisation of best-corrected visual acuity (BCVA). Rasch analysis was used to transform the IVI responses into interval-level measures comprising the ‘reading’, ‘mobility’ and ‘emotional’ subscales with effect sizes calculated for pre-post VRQoL scores.ResultsMean preoperative BCVA was counting-fingers at 2 feet in the operated eye (20/240 fellow eye). Preoperative VRQoL scores: −2.27, –2.91 and −3.06 logits for the reading, mobility and emotional subscales, respectively. Device retention rate was 90% over the follow-up period (mean 26±12 months). We observed large gains for reading and mobility of 1.92 logits (effect size 0.88), and 2.64 logits (effect size 0.89) respectively, with a moderate gain in the emotional subscale of 2.11 logits (effect size 0.59). These improvements did not vary significantly with BCVA on multivariate analysis (all p>0.05).ConclusionWe observed a differential short-term improvement to VRQoL after KPro implantation with a significant impact on emotional well-being, which may not be fully explained by visual improvement alone. Further studies are required to confirm if these improvements in VRQoL are sustained in the long-term and are generalisable to other populations.

scholarly journals Need for transition medicine in pediatric surgery – health related quality of life in adolescents and young adults with congenital malformations

2022 ◽  
Vol 0 (0) ◽  
Author(s):  
Marie Uecker ◽  
Benno Ure ◽  
Julia Hannah Quitmann ◽  
Jens Dingemann
Keyword(s):  
Quality Of Life ◽  
Congenital Malformations ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Surgical Conditions ◽  
The Impact

Abstract Survival rates of patients with visceral congenital malformations have increased considerably. However, long-term morbidity in these patients is high. In the last decades, these circumstances have led to a shift in goals of caretakers and researchers with a new focus on patients’ perspectives and long-term morbidity. Health-related quality of life (HrQoL) is the most commonly used patient-reported outcome measure to assess the impact of chronic symptoms on patients’ everyday lives. Most pediatric surgical conditions can cause a significantly decreased HrQoL in affected patients compared to the healthy population. In order to guarantee life-long care and to minimize the impact on HrQoL a regular interdisciplinary follow-up is obligatory. The period of transition from child-centered to adult-oriented medicine represents a critical phase in the long-term care of these complex patients. This scoping review aims to summarize relevant pediatric surgical conditions focusing on long-term-morbidity and HrQoL assessment in order to demonstrate the necessity for a well-structured and standardized transition for pediatric surgical patients.

The impact of comorbidities on health-related quality of life of people with osteoarthritis over ten years

Rheumatology ◽  
2021 ◽  
Author(s):  
Ting Zhao ◽  
Tania Winzenberg ◽  
Dawn Aitken ◽  
Barbara de Graaff ◽  
Hasnat Ahmad ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Independent Living ◽  
Health State ◽  
Health Related Quality ◽  
Psychological Wellness ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Abstract Objective To investigate the impact of total number and patterns of comorbidities on health-related quality of life (HRQoL) and identify the most prevalent and influential comorbidity patterns in people with osteoarthritis (OA) over ten years. Methods Participants from the Tasmanian Older Adult Cohort aged 50-80 years, with self-reported OA and data on comorbidities and HRQoL were included. Participants were interviewed at baseline (n = 398), 2.5-years (n = 304), 5-years (n = 269) and 10-years (n = 191). Data on the self-reported presence of 10 chronic comorbidities were collected at baseline. HRQoL was assessed using the Assessment of Quality of Life-4-Dimensions. The long-term impacts of the number and of the nine most prevalent combinations of cardiovascular (CVD), non-OA musculoskeletal (Ms), metabolic, and respiratory comorbidities on HRQoL over ten years were analysed using linear mixed regressions. Results Compared with comorbidity-free OA participants, the health state utility (HSU) of those with 2 or ≥ 3 comorbidities was respectively -0.07 and -0.13 units lower over ten years, largely driven by reduced scores for independent living, social relationships and psychological wellness. Comorbidity patterns including ‘CVD+Ms’ were most influential, and associated with up to 0.13 units lower HSU, mostly through negative impacts on independent living (up to -0.12), psychological wellness (up to -0.08) and social relationship (up to -0.06). Conclusion Having more comorbidities negatively impacted OA patients’ long-term HRQoL. OA patients with CVD and non-OA musculoskeletal conditions had the largest HSU impairment, therefore optimal management and prevention of these conditions may yield improvements in OA patients’ HRQoL.

The Impact of Bariatric Surgery on Long Term (≥5 years) Health-Related Quality of Life: A Systematic Review

2015 ◽  
Vol 39 ◽  
pp. S30
Author(s):  
Shannon C. Driscoll ◽  
Kendra Lester ◽  
John Fardy ◽  
Deborah M. Gregory ◽  
Laurie K. Twells
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Bariatric Surgery ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

scholarly journals Impact of toothpaste on oral health-related quality of life in people with dentine hypersensitivity

2019 ◽  
Author(s):  
Stephen Mason ◽  
Gary R. Burnett ◽  
Nisha Patel ◽  
Avinash Patil ◽  
Robert Maclure
Keyword(s):  
Quality Of Life ◽  
Oral Health ◽  
Health Related Quality ◽  
Dentine Hypersensitivity ◽  
Stannous Fluoride ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Abstract Background Dentine hypersensitivity can impact functional status and everyday activities such as eating and talking. This study aimed to assess changes in oral health-related quality of life measures in individuals with dentine hypersensitivity following long-term use (24 weeks) of a commercially available toothpaste marketed for dentine hypersensitivity relief. Methods This study was conducted across two sites and enrolled 75 adults with ≥2 non-adjacent sensitive teeth. Participants were assigned to twice-daily brushing with toothpaste containing 0.454% w/w stannous fluoride (1100 ppm fluoride). Every 4 weeks, participant-reported outcomes were assessed using the Dentine Hypersensitivity Experience Questionnaire (DHEQ), a condition specific oral health-related quality of life scale that has five domains and includes questions on social and emotional impact, restrictions, adaptations and effect on life overall. Responses to a clinically applied evaporative (air) stimulus were assessed using the examiner-observed Schiff sensitivity scale and Labelled Magnitude Scales (LMS), which included dentine hypersensitivity-specific descriptors of intensity, duration, tolerability and descriptive qualities of the participant’s response. Results Participant-reported outcomes demonstrated reduction of the impact of dentine hypersensitivity over time on health-related quality of life, as measured by the DHEQ. This reached statistical significance from Week 8 onwards (p<0.0001 versus baseline) for the Total DHEQ score, with scores continually decreasing at each timepoint. Most domain scores followed a similar pattern. Statistically significant reductions were also detected for the examiner-observed Schiff Sensitivity Scale scores at all timepoints (including at 4 weeks) (p<0.05), which were mirrored by LMS responses. The toothpaste was generally well-tolerated. Conclusions These results show that long-term use of a sensitivity toothpaste containing 0.454% w/w stannous fluoride has a beneficial, ongoing, impact on the oral health-related quality of life of people with dentine hypersensitivity.

scholarly journals Long-term health-related quality of life, survival and costs by different levels of functional outcome six months after stroke

2018 ◽  
Vol 3 (2) ◽  
pp. 157-164 ◽  
Author(s):  
Ann-Sofie Rudberg ◽  
Eivind Berge ◽  
Anders Gustavsson ◽  
Per Näsman ◽  
Erik Lundström
Keyword(s):  
Quality Of Life ◽  
Functional Outcome ◽  
Economic Evaluations ◽  
Health Related Quality ◽  
Term Survival ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Introduction Information about the impact of functional outcome after stroke is currently missing on health-related quality of life, survival and costs. This information would be valuable for health economic evaluations and for allocation of resources in stroke health care. Patients and methods Data on 297 Swedish patients included in the Third International Stroke Trial were analysed including functional outcome at six months (measured by Oxford Handicap Scale), health-related quality of life up to 18 months (EQ-5D-3L) and survival up to 36 months. We used record linkage to collect data on costs up to 36 months, using national patient registers. Results Patients with a better functional outcome level at six months had a significantly better health-related quality of life at 18 months ( p < 0.05), better long-term survival ( p < 0.05) and lower costs ( p < 0.001), for all time points up to 36 months. The difference in costs was mainly due to differences in days spent in hospital ( p < 0.005). Discussion This study showed an association between functional outcome at six months and health-related quality of life up to 18 months, and costs up to 36 months. Conclusion Functional outcome six months after stroke is an important determinant of health-related quality of life, survival and costs over 36 months. Effective interventions aimed at reducing short-term disability levels are therefore also expected to reduce the overall burden of stroke.

The Impact of Severe Sepsis on Health-Related Quality of Life: A Long-Term Follow-Up Study

2008 ◽  
Vol 107 (6) ◽  
pp. 1957-1964 ◽  
Author(s):  
José G. M. Hofhuis ◽  
Peter E. Spronk ◽  
Henk F. van Stel ◽  
Augustinus J. P. Schrijvers ◽  
Johannes H. Rommes ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Related Quality ◽  
Follow Up Study ◽  
Related Quality ◽  
Long Term Follow Up ◽  
Health Related ◽  
The Impact
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