Prophylaxis in people with haemophilia

SummaryA four-decade clinical experience and recent evidence from randomised controlled studies definitively recognised primary prophylaxis, i.e. the regular infusion of factor concentrates started after the first haemarthrosis and/or before the age of two years, as the first-choice treatment in children with severe haemophilia. The available data clearly show that preventing bleeding since an early age enables to avoid or reduce the clinical impact of muscle-skeletal impairment from haemophilic arthropathy and the related consequences in psycho-social development and quality of life of these patients. In this respect, the aim of secondary prophylaxis, defined as regular long-term treatment started after the age of two years or after two or more joint bleeds, is to avoid (or delay) the progression of arthropathy. The clinical benefits of secondary prophylaxis have been less extensively studied, especially in adolescents and adults; also in the latter better outcomes and quality of life for earlier treatment have been reported. This review summarises evidence from literature and current clinical strategies for prophylactic treatment in patients with severe haemophilia, also focusing on challenges and open issues (optimal regimen and implementation, duration of treatment, long-term adherence and outcomes, cost-benefit ratios) in this setting.

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“I just wear it and I become normal”: a qualitative study of Tanzanian women’s experiences with long-term vaginal pessary use for stress urinary incontinence

BMJ Open ◽

10.1136/bmjopen-2020-040009 ◽

2021 ◽

Vol 11 (1) ◽

pp. e040009

Author(s):

Karina Holm Nissen ◽

Benjamin C Shayo ◽

Vibeke Rasch ◽

Gileard G Masenga ◽

Ditte Søndergaard Linde

Keyword(s):

Quality Of Life ◽

Urinary Incontinence ◽

Stress Urinary Incontinence ◽

Women’S Experiences ◽

Women's Experiences ◽

Vaginal Pessary ◽

Cost Effective Treatment ◽

Long Term Treatment

IntroductionPrevious research has shown that vaginal pessaries are a cost-effective treatment for women worldwide suffering from stress urinary incontinence. However, little is known about African women’s experiences with vaginal pessary use. The aim of this study was to understand the experiences of vaginal pessary use among Tanzanian women who had received long-term pessary treatment for stress urinary incontinence.Methods15 semi-structured, individual interviews were conducted over a 2-month period in 2019 with Tanzanian women living in the Kilimanjaro Region who suffered from stress urinary incontinence and who had been using a pessary for at least 18 months. The interview transcripts were analysed using qualitative content analysis.ResultsThe primary motivation for seeking treatment were discomfort from symptoms, social consequences and low quality of life. Perceived benefits from pessary use included improved quality of life with reacquired abilities to perform daily activities, participate in social gatherings, feeling symptom relief and improved sexual relations. Further, some women saw pessary treatment as superior to other locally available treatment options. Perceived barriers for pessary use included shame, husband’s disapproval, limited access to treatment and lack of knowledge among the women as well as healthcare personnel.ConclusionVaginal pessaries are well-perceived as a long-term treatment method among Tanzanian women suffering from stress urinary incontinence. This method may have potential to be implemented large scale in Tanzania if combined with basic health education.

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The crystal arthropathies

InnovAiT Education and inspiration for general practice ◽

10.1177/1755738013499319 ◽

2013 ◽

Vol 6 (11) ◽

pp. 681-687 ◽

Cited By ~ 1

Author(s):

Robert A Jones ◽

Brian Quilty

Keyword(s):

Quality Of Life ◽

Risk Factors ◽

Inflammatory Arthritis ◽

Term Treatment ◽

Routine Practice ◽

Treatment Goals ◽

Crystal Arthropathies ◽

Long Term Treatment

Unlike many other forms of inflammatory arthritis, the crystal arthropathies are routinely diagnosed and managed in primary care. Gout, in particular, is relatively commonplace and rates of other types of crystal-related arthritis are predicted to increase. These are, therefore, conditions that GPs and trainees will regularly encounter during routine practice. While the clinical features and pathophysiology of gout and pseudo-gout are well described, the long-term treatment goals and options of management are often less well understood, and opportunities to assess for associated co-morbidities can easily be missed. GPs can be central in optimising management by promptly and appropriately addressing acute symptoms, preventing recurrent attacks, minimising disability and work absences, reducing cardiovascular risk factors, improving general health and enhancing quality of life.

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Concerns and Quality of Life of Cancer Survivors Across the Survivorship Trajectory: A Singapore Perspective

10.21203/rs.2.14780/v1 ◽

2019 ◽

Author(s):

Gek Phin Chua ◽

Quan Sing Ng ◽

Hiang Khoon Tan ◽

Whee Sze Ong

Keyword(s):

Quality Of Life ◽

Cancer Survivors ◽

Cancer Treatment ◽

Cancer Survivorship ◽

Recurrence Risk ◽

Term Treatment ◽

Fear Of Recurrence ◽

Long Term Treatment

Abstract Background The aim of this study is to determine the main concerns of survivors at various stages of the cancer survivorship of the cancer survivorship trajectory and to assess whether these concerns have any effect on their quality of life (QOL). The overall goal was to use the insights from the study to guide practice on patient care. Methods A cross-sectional survey of 1107 cancer survivors diagnosed with colorectal, breast, lung, gynaecological, prostate or liver cancers from a cancer centre in Singapore. Eligible patients self-completed a questionnaire adapted from the Mayo Clinic Cancer Centre’s Cancer Survivors Survey of Needs. Results The top 5 concerns among all survivors were cancer treatment and recurrence risk (51%), followed by long-term treatment effects (49%), fear of recurrence (47%), financial concerns (37%) and fatigue (37%). Cancer treatment and recurrence risk, long-term treatment effects and fear of recurrence were amongst the top concerns across the survivorship trajectory. Mean QOL was 7.3 on a scale of 0 – 10. Completed treatment patients had higher QOL score than the newly diagnosed and on treatment patients and the patients dealing with recurrence or second cancer patients. Predictors for QOL included the economic status and housing type of patients and whether patients were concerned with pain and fatigue Conclusion This study confirms that cancer survivors in Singapore face multiple challenges and had various concerns at various stages of cancer survivorship, some of which negatively affect their QOL It is critical to design patient care delivery that appropriately address the various concerns of cancer survivors in order for them to cope and improve their QOL.

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Effects of long-term treatment with Dienogest on the quality of life and sexual function of women affected by endometriosis-associated pelvic pain

Journal of Pain Research ◽

10.2147/jpr.s207599 ◽

2019 ◽

Vol Volume 12 ◽

pp. 2371-2378 ◽

Cited By ~ 13

Author(s):

Salvatore Caruso ◽

Marco Iraci ◽

Stefano Cianci ◽

Salvatore Giovanni Vitale ◽

Valentina Fava ◽

...

Keyword(s):

Quality Of Life ◽

Sexual Function ◽

Pelvic Pain ◽

Term Treatment ◽

Long Term Treatment

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Improved quality of life after long-term treatment with the bisphosphonate ibandronate in patients with metastatic bone disease due to breast cancer

European Journal of Cancer ◽

10.1016/j.ejca.2004.03.025 ◽

2004 ◽

Vol 40 (11) ◽

pp. 1704-1712 ◽

Cited By ~ 119

Author(s):

I.J Diel ◽

J.-J Body ◽

M.R Lichinitser ◽

E.D Kreuser ◽

W Dornoff ◽

...

Keyword(s):

Breast Cancer ◽

Quality Of Life ◽

Bone Disease ◽

Term Treatment ◽

Metastatic Bone Disease ◽

Long Term Treatment

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Assessment of Quality of Life During Long-Term Treatment of Tolvaptan in Refractory Heart Failure

International Heart Journal ◽

10.1536/ihj.13-326 ◽

2014 ◽

Vol 55 (3) ◽

pp. 264-267 ◽

Cited By ~ 16

Author(s):

Teruhiko Imamura ◽

Koichiro Kinugawa ◽

Tomohito Ohtani ◽

Yasushi Sakata ◽

Taiki Higo ◽

...

Keyword(s):

Quality Of Life ◽

Heart Failure ◽

Term Treatment ◽

Refractory Heart Failure ◽

Long Term Treatment

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What Is a Clinically Relevant Improvement in Quality of Life in Adults With ADHD?

Journal of Attention Disorders ◽

10.1177/1087054715580395 ◽

2015 ◽

Vol 23 (1) ◽

pp. 65-75

Author(s):

Yoko Tanaka ◽

Meryl Brod ◽

Jeannine R. Lane ◽

Himanshu Upadhyaya

Keyword(s):

Quality Of Life ◽

Adult Adhd ◽

Minimal Clinically Important Difference ◽

Term Treatment ◽

Short Term ◽

Treatment Groups ◽

Clinically Important Difference ◽

Long Term Treatment

Objective: To estimate a minimal clinically important difference (MCID) on the adult ADHD Quality of Life (AAQoL) scale. Method: The MCID was determined from data from short-term ( N = 537) and long-term ( N = 440), placebo-controlled atomoxetine trials in adults with ADHD. For the anchor-based approach, change in clinician-rated Clinical Global Impressions–ADHD–Severity (CGI-ADHD-S) scores was used to derive MCID. For the distribution-based approach, baseline-to-endpoint mean ( SD) changes in AAQoL scores corresponding to 0.5 SD were computed. Results: The MCID was similar (approximately 8-point difference) between the short-term and the long-term treatment groups when either the anchor-based or distribution-based approach was used. Conclusion: These results suggest that approximately 8 points in the change from baseline on the AAQoL is a MCID.

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Long-term androgen deprivation therapy (ADT) with leuprorelin and quality of life in patients with advanced prostate cancer (PCa).

Journal of Clinical Oncology ◽

10.1200/jco.2017.35.6_suppl.268 ◽

2017 ◽

Vol 35 (6_suppl) ◽

pp. 268-268

Author(s):

Peter Hammerer ◽

Lukas Manka ◽

Manfred Wirth

Keyword(s):

Quality Of Life ◽

Sexual Function ◽

Sexual Activity ◽

Androgen Deprivation ◽

Term Therapy ◽

Control Group ◽

Long Term Treatment ◽

Hormone Sensitive

268 Background: LHRH analogs are the gold standard for treatment of patients with hormone-sensitive advanced PCa. In this study, we investigated the quality of life (QoL) of PCa patients under long-term treatment with leuprorelin acetate in microcapsules (1, 3, and 6 month depot formulation) for up to 19.8 years. Methods: Observational and retrospective analysis of data from 536 PCa patients treated with leuproreline and 116 patients of a control group (CG, ≥ 77 years of age, > 5 years urological treatment, no cancer, no ADT). Data was collected in 30 German office based urological practices using EORTC questionnaires QLQ-C30 and QLQ-PR25. Results: Mean treatment duration was 8.6 years (range: 4.5 - 19.8 years). Mean age ± SD of PCa patients (79.6 ± 6.3 years) was comparable to CG (80.5 ± 3.1 years), as were body height, weight, BMI, and Karnofsky-Index (88.0 ± 12.7 vs. 88.4 ± 12.0). The general health status (QLQ-C30) was comparable for PCa patients vs. CG: 64.6 ± 20.5 vs. 66.8 ± 20.3; p = 0.3117. Marginal differences were observed regarding physical functioning (73.2 ± 23.1 vs. 78.1 ± 21.0; p = 0.0402) and role functioning (70.6 ± 30.4 vs. 74.4 ± 25.7; p = 0.1648). PCa patients rated fatigue (33.6 ± 25.1 vs. 28.8 ± 23.3; p = 0.0629), dyspnoea (24.0 ± 28.5 vs. 19.6 ± 26.9; p = 0.1307), and insomnia (28.9 ± 32.6 vs. 23.7 ± 27.2; p = 0.0751) slightly worse than CG. As assessed by QLQ-PR25, PCa patients scored lower on sexual activity (12.0 ± 20.6 vs. 23.7 ± 25.7; p < 0.0001) and sexual function (43.3 ± 25.8 vs. 55.9 ± 27.0; p = 0.0067) compared to CG. PCa patients had less urinary tract symptoms (28.2 ± 19.8 vs. 31.2 ± 19.2; p = 0.1472) but stronger symptoms of androgen deprivation (21.4 ± 17.3 vs. 10.8 ± 13.2; p < 0.0001), and they had a higher need of incontinence aids (29.6 ± 34.2 vs. 16.7 ± 20.5; p = 0.0056) – however, 136 of the 536 PCa patients had a prostatectomy. Conclusions: In this study, PCa patients treated with leuprorelin for up to 19.8 years (8.6 years on average) had an overall QoL comparable to an age-matched control group. As expected, sexual activity and sexual function were lower in PCa patients under ADT. Overall, treatment with leuprorelin is a well-tolerated long-term therapy for patients with hormone-sensitive advanced PCa. Clinical trial information: ENA E005(a) / DE-N-LEU-019(a).

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