Background: Acute treatment must be permanently accessible for every patient diagnosed with hereditary angioedema (HAE). In many cases this type of therapy does not provide/offer sufficient control of the disease, so long-term prophylaxis (LTP) is recommended. In the case of regular and prolonged/extended administration of drugs, the route of administration is essential. The aim of the investigation was to assess the control of HAE among patients in Romania receiving the available medications, while also examining potential correlations within the outcomes.
Material and methods: A phone call was made to all adult patients registered in the Romanian HAE Registry. Patients with confirmed diagnosis of HAE who had at least one angioedema attack in the last three months were asked to complete, online, the angioedema control test (AECT) for one- and three months respectively. AECT scores were calculated according to the authors’ instructions.
Results: A total of 121 patients were contacted. Of these, 83 complies with the eligibility criteria and 56 completed the questionnaires (response rate 67.4%), 18 (32.1%) men and 38 (67.9%) women. Acute, home administered treatment with Icatibant or pdC1-INH was available for every patient during the study time. Nine (14.5%) participants used LTP too, with pdC1-INH. These treatments ensured an adequate control of the disease in only 13 patients (21%) in case of the three-month AECT, of whom 2 used LTP. The one-month questionnaire showed a well-controlled disease in 14 patients (23%), from which only 1 was on prophylactic therapy.
Conclusion: In most Romanian HAE patients, the available drugs do not offer a proper control of the disease. Even though a first-line drug for LTP is available, its administration route by intravenous injections makes it inconvenient for many patients, highlighting the necessity for new, easy-to administer drugs for HAE patients from our country.
Tag Archives: quality of life
A Prospective Study about the Influence of Selenium Based Supplements on the Autoimmune Process Evolution and the Health-Related Quality of Life in Patients with Chronic Autoimmune Thyroiditis
Objective: The purpose of this study was to investigate the benefits of two different Selenium based supplements on patients with chronic autoimmune thyroiditis.
Methods: We conducted a prospective study on 50 patients with chronic autoimmune thyroiditis, who were divided into three different treatment groups, one group taking Selenium 100 µg, one Procor T (a combination of Selenium 100 µg and other elements like copper, Zinc and Q10 Conenzyme) and one control group taking Placebo pills. We measured on two follow up visits the antibody levels (anti-thyroidperoxidase- TPO Ab) and offered each patient a standardized questionnaire regarding the thyroid-related quality of life (THYPROro).
Results: At the 6 months follow up visit there was a statistically significant decrease in the antibody levels for each treatment group compared to the base levels. The THYPROro questionnaire scores showed an improvement in most aspects regarding the quality of life as well, but there was no significant difference between the placebo and the treated groups in the magnitude of this improvement.
Conclusions: Based on our results, we could not identify a certain benefit in improving quality of life with the supplementation of Selenium, as the improvements were at a similar level for the patients who took Placebo pills. Further studies with more patients, as well as taking the Selenium deficiency in consideration (by measuring the basal serum level of Selenium for each patient) would be required to find the target group of patients who could have most benefits of Selenium-based supplementation.
Romanian Translation and Cross-Cultural Adaptation of the SarQol Questionnaire
Sarcopenia, or age-related muscle loss is emerging as a major public health concern. A reduced quality of life (QoL) due to impaired physical performance associated with this disease has been evidenced in these individuals.Generic instruments, such as Short Form 36 questionnaire (SF-36), do not accurately assess the impact of sarcopenia on QoL. SarQol (Sarcopenia Quality of Life) questionnaire, was the first disease-specific questionnaire addressing quality of life in patients with sarcopenia and has been recently designed for providing a global picture on quality of life in community-dwelling elderly subjects aged 65 years and older. Our aim was the translation and cultural adaptation of the original SarQol, to finally obtain a highly reliable instrument for the assessment of the quality of life of Romanian patients, affected by sarcopenia.
We followed the recommended process, the international protocol of translation. The pretest process involved 20 subjects (10 sarcopenic and 10 non sarcopenic with different educational and socioeconomic backgrounds) who were asked to complete the questionnaire. Feedbacks were requested from all subjects regarding the clearness of questions, difficulties in completing the test or understanding the meaning of questions. Using the recommended best practice protocol for translation, the pre-final version is comparable with the original instrument in terms of content and accuracy. After the validation of psychometric properties, it should be a useful tool to assess Quality of Life and sarcopenia among elderly Romanian patients.
Depression and Quality of Life in Elderly Patients with Cluster C Personality Disorder
Introduction: Health-related quality of life (HRQoL) is an accepted outcome measure in patients with depression.
Aim: Our study aimed at assessing QoL in depressed elderly patients with cluster C PDs, admitted to Psychiatric Clinic No II Targu Mures. Cluster C PDs is the most frequent diagnosis on axis II for depression.
Material and method: A sample of thirty elderly in-patients with cluster C PDs and depression was studied. Mental disorders were assessed based on DSM IV criteria, Hamilton scale of depression and SCID II (structured clinical interview for DSM). QoL was assessed with the aid of the World Health Organization Quality of Life instrument (WHOQoL-Bref), and the Global Assessment of Functioning scale (GAF).
Results: We formed high co-morbidity among depression and cluster C PD, especially dependent PD, which was associated with poor QoL. The WHOQoL physical health and social functioning were significantly associated with GAF. Conclusion and Discussion: PD symptoms in elderly patients appear to operate as co-factor that amplify or exacerbate the impact of depression on long-term functioning and QoL. We conclude that if co-morbid personality disorder is not treated, patients will respond less well to treatment for depression than do those without PD.
Quality of Life in Cervical Cancer Survivors
Introduction: Cervical cancer is a public health problem, in Romania 5 women die every day and 8 are diagnosed each day with cervical cancer. Cervical cancer survivors experience a complexity of problems – physical, psychological and sexual-related to the consequences of disease and treatment. Quality of life in cervical cancer patients, as in all cancer diagnosed patients as well, depends on multiple variables. Aim: to determine the emotional and social impact of cervical cancer diagnoses and cancer-related quality of life.
Material and method: study was made over one year, between 2010 and 2011, on 50 patients who accepted to enter in our study, within a 3 year interval from diagnose to actual study.
Results: 60% presented anxiety and 80% distress. Weakness, fatigue was present in about 25% of patients. Sexual life was affected in 40% from cases.
Conclusion: quality of life in cervical cancer patients, as in all cancer diagnosed patients as well, depends on multiple variables; treatment present many side-effects and capacity to work can be affected as well.
Bisphosphonate-Related Osteonecrosis of the Jaws: a real Challenge for Dentists
Background: Osteonecrosis of the jaw is a serious complication associated with oral and intravenous bisphosphonate therapy. Its pathogenesis is not well understood and its management is difficult.The aim of ourstudy was to evaluate the awareness of dentists in Târgu Mureș on the possibilities of treating patients who are treated with bisphosphonate in dental offices.
Material and method: We carried out a questionnaire-based study among dentists in Târgu Mureș reaching important issues such as: if the patient is asked if medical history follows / followed treatment with bisphosphonates, if they made surgical treatment in these patients, if they know under what conditions can they perform this treatment, if they deem it is necessary to contact the prescriber before surgical treatment.
Results: Seventy questionnaires were returned. During the medical history most clinicians (60%) asked the patients whether they follow/followed treatment with bisphosphonates and most of them (42.85%) did not perform treatments in these patients. While 85.71% of respondents declared that they do contact the prescriber before performing surgical treatment, 48,57% were not aware under what conditions they could undergone the treatment.
Conclusions: The dentists did not seem to be well informed about this pathological entity, known only since 2003. In the absence of appropriate protocols they could not provide a high quality treatment and in these circumstances they might do more harm than good.