| 1. |
- Emtestam, Lennart, et al.
(författare)
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Post Marketing Observational Study to Assess Quality of Life Changes in Swedish Patients with Moderate or Severe Hidradenitis suppurativa after 6 months on Adalimumab Treatment (HOPE study)
- 2019
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: Hidradenitis suppurativa (HS) has a major impact on patients’ quality of life (QoL). Numerous data indicate that blocking TNF-α results in decreased HS disease activity.Objectives: To evaluate the QoL in Swedish HS patients treated with adalimumab (ADA) in accordance with routine clinical practice (HOPE study).Methods: Data was collected from the patients’ medical records (demographics and baseline data), by investigator assessment (Hidradenitis Suppurativa Clinical Response (HiSCR)) and by patient questionnaires (DLQI and HSIA evaluating QoL; skin pain measured by NRS). Questionnaires were completed at baseline and at visits around weeks 4 (visit 2) and 12 (visit 3).Results: This descriptive interim analysis included ten patients with moderate to severe HS, 70% were women. Data was not obtained for all patients from visit 3 due to time cut-off. Median baseline DLQI score was 19 and at subsequent visits, most patients demonstrated a pronounced reduction (improvement) in DLQI. Median baseline HSIA values were 8 (item 1), 5 (item 4 and 7), respectively. At visit 2, median values had decreased to 1.5 (item 1), 0 (item 4) and 0.5 (item 7). The baseline median score of worst and average skin pain was 6.5 and 4.5, respectively. In most patients, pain scores decreased during ADA treatment. HiSCR was achieved by 70% (7/10) of patients at visit 2 and by 83% (5/6) at visit 3.Conclusion: In this study, Swedish HS patients receiving ADA in accordance with routine clinical practice demonstrated improved QoL, reduction in pain and treatment success as measured by HiSCR.
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| 2. |
- Shayesteh, Alexander, et al.
(författare)
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Hyperhidrosis – Sweating Sites Matter : Quality of Life in Primary Hyperhidrosis according to the Sweating Sites Measured by SF-36
- 2017
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Ingår i: Dermatology. - : S. Karger. - 1018-8665 .- 1421-9832. ; 233:6, s. 441-445
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Primary hyperhidrosis has negative impacts on quality of life. The aim of this study was to investigate whether the impacts of primary hyperhidrosis on quality of life are different depending on the localisation of the sweating.METHOD: We compiled background data, Hyperhidrosis Disease Severity Scale (HDSS), and Short-Form Health Survey (SF-36) post hoc results from 2 previous studies. Cases who described only 1 site as their most problematic area of sweating were included (n = 160/188) while individuals with multifocal primary sites of hyperhidrosis were excluded (n = 28/188).RESULTS: Individuals included were 11-62 years old with a mean age of 30.2 ± 10.4 years, and axillary hyperhidrosis (65.6%) was the most common type of hyperhidrosis. Comorbidities were more common when hyperhidrosis was reported in other than the axillary, palmar, and plantar regions. Excluding comorbidities showed the lowest SF-36 mental component summary scores for axillary (41.6 ± 11.6), palmar (40.0 ± 9.4), and plantar hyperhidrosis (41.1 ± 13.7). The HDSS showed the highest proportion of severe cases in axillary (60.6%) and palmar (51.5%) hyperhidrosis (p < 0.01) while mild cases were more often observed in plantar (60%), facial (83.3%), and other sites (85.7%) in primary hyperhidrosis (p < 0.01).CONCLUSION: Our results indicate that impairments in quality of life can be different depending on the manifestation of primary hyperhidrosis on the body. This can have an influence on how patients with hyperhidrosis could be prioritised in health care. Subgroup samples affected by facial hyperhidrosis and other sites of primary hyperhidrosis were however small, and more research is required to verify our findings.
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| 3. |
- Shayesteh, Alexander, et al.
(författare)
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Prevalence and Characteristics of Hyperhidrosis in Sweden : A Cross-Sectional Study in the General Population
- 2016
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Ingår i: Dermatology. - : S. Karger AG. - 1018-8665 .- 1421-9832. ; 232:5, s. 586-591
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Hyperhidrosis is defined as excessive sweating which can be primary or secondary. Data about the prevalence of primary hyperhidrosis are scarce for northern Europe.OBJECTIVE: Our aim was to investigate the prevalence of hyperhidrosis focusing on its primary form and describe the quality of life impairments for the affected individuals.METHODS: Five thousand random individuals aged 18-60 years in Sweden were investigated. The individuals' addresses were obtained from Statens personadressregister, SPAR, which includes all persons who are registered as resident in Sweden. A validated questionnaire regarding hyperhidrosis including the Hyperhidrosis Disease Severity Scale (HDSS) and 36-item Short Form (SF-36) health survey was sent to each individual. The participants were asked to return the coded questionnaire within 1 week.RESULTS: A total of 1,353 individuals (564 male, 747 female and 42 with unspecified gender) with a mean age of 43.1 ± 11.2 years responded. The prevalence of primary hyperhidrosis was 5.5%, and severe primary hyperhidrosis (HDSS 3-4 points) occurred in 1.4%. Secondary hyperhidrosis was observed in 14.8% of the participants. Our SF-36 results showed that secondary hyperhidrosis causes a significant (p < 0.001) impairment of both mental and physical abilities while primary hyperhidrosis impairs primarily the mental health (p < 0.001).CONCLUSION: Hyperhidrosis affects individuals in adolescence as a focal form while occurring as a generalised form with increasing age. Further, the prevalence of primary hyperhidrosis described in our study is comparable to other studies from the western hemisphere. While secondary, generalised hyperhidrosis impairs both physical and mental aspects of life, primary hyperhidrosis, with the exception of severe cases, mainly affects the mental health.
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| 4. |
- Shayesteh, Alexander, et al.
(författare)
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Primary hyperhidrosis: Implications on symptoms, daily life, health and alcohol consumption when treated with botulinum toxin
- 2016
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Ingår i: Journal of dermatology (Print). - : Wiley. - 0385-2407 .- 1346-8138. ; 43:8, s. 928-933
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Tidskriftsartikel (refereegranskat)abstract
- Primary hyperhidrosis affects approximately 3% of the population and reduces quality of life in affected persons. Few studies have investigated the symptoms of anxiety, depression and hazardous alcohol consumption among those with hyperhidrosis and the effect of treatment with botulinum toxin. The first aim of this study was to investigate the effect of primary hyperhidrosis on mental and physical health, and alcohol consumption. Our second aim was to study whether and how treatment with botulinum toxin changed these effects. One hundred and fourteen patients answered questionnaires regarding hyperhidrosis and symptoms, including hyperhidrosis disease severity scale (HDSS), visual analog scale (VAS) 10-point scale for hyperhidrosis symptoms, hospital anxiety and depression scale (HADS), alcohol use disorder identification test (AUDIT) and short-form health survey (SF-36) before treatment with botulinum toxin and 2 weeks after. The age of onset of hyperhidrosis was on average 13.4 years and 48% described heredity for hyperhidrosis. Significant improvements were noted in patients with axillary and palmar hyperhidrosis regarding mean HDSS, VAS 10-point scale, HADS, SF-36 and sweat-related health problems 2 weeks after treatment with botulinum toxin. Changes in mean AUDIT for all participants were not significant. Primary hyperhidrosis mainly impairs mental rather than physical aspects of life and also interferes with specific daily activities of the affected individuals. Despite this, our patients did not show signs of anxiety, depression or hazardous alcohol consumption. Treatment with botulinum toxin reduced sweat-related problems and led to significant improvements in HDSS, VAS, HADS and SF-36 in our patients.
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| 5. |
- Shayesteh, Alexander, et al.
(författare)
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The Meaning of Living for Men Suffering From Primary Hyperhidrosis
- 2019
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Ingår i: American Journal of Men's Health. - : Sage Publications. - 1557-9883 .- 1557-9891. ; 13:6
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Tidskriftsartikel (refereegranskat)abstract
- Primary hyperhidrosis means excessive focal sweating and it has a negative effect on the mental health of those affected. Although there is no gender difference regarding the prevalence of the disease, men are less likely to seek help for this condition. The aim of this study was to explore the meaning of living with primary hyperhidrosis in men. Interviews with 15 men, selected by purposive sampling, were performed at Umeå University Hospital in Sweden between June 2016 and October 2017, and analyzed using qualitative content analysis technique according to Graneheim and Lundman (2004). This study found one theme, namely, to be captured in a filthy body, based on the categories: surrender to the condition reluctantly; prepare for a sweat attack; withdraw from close contacts; and worry about others’ perceptions. The theme describes men living with hyperhidrosis feeling filthy while they struggle to control or hide the excessive sweating. Insufficient understanding from others and being reminded from the sweating is stressful and results in a sense of captivity. Interpreting the result, we conclude that the disease could stigmatize the individual, which has a negative effect on mental health and the will to seek help. Meanwhile, providing information about the disease early, as in schools, could increase the willingness of men to seek medical help. The results of this study also reinforce quantitative studies reporting the negative effects of primary hyperhidrosis on mental health.
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| 6. |
- Shayesteh Afshar, Alexander, 1975-
(författare)
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Primary hyperhidrosis : prevalence and impacts for the individual
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Primary hyperhidrosis, excessive sweating, is a condition with unknown prevalence in many parts of the world. The disease debuts in adolescence and it affects men and women in equal proportions. A genetic background exists and the most common localisation on the body for excessive sweating is the axillary region. It is known that primary hyperhidrosis reduces quality of life and interferes with daily activities. Affected individuals often hide their sweating problems and the disease may lead to social withdrawal and isolation. Although botulinum toxin is an effective and available treatment, relatively few persons with primary hyperhidrosis seek medical healthcare and a minority of those are men.We investigated the prevalence of primary hyperhidrosis in Sweden and how the disease impairs quality of life, changes in daily activities, signs of depression and anxiety and alcohol consumption before and after treatment with botulinum toxin. The severity of hyperhidrosis according to the affected body sites was also investigated. Further on we explored mens experiences living with primary hyperhidrosis by interviews and content analysis.Our results showed that primary hyperhidrosis occurs in 5.5% of the Swedish population. The disease reduces quality of life and affects mainly the psychological health of the individuals. Persons with palmar and axillary hyperhidrosis rated their symptoms more severe and with much higher impact on their quality of life compared to persons suffering from hyperhidrosis elswhere on the body. Individuals with axillary hyperhidrosis more often reported a later debut and signs of peripheral vasoconstrictions were more common in this group compared to individuals with palmar hyperhidrosis. This made us believe that factors other than genetics seem to play a role in triggering axillary hyperhidrosis. Treatment with botulinum toxin A had a significant effect in reducing the symptoms and their interferences on daily life while increasing the overall quality of life. Signs of depression, stress and anxiety were also significantly reduced by treatment. This treatment was safe and no serious side-effects were noted. Qualitative content analysis of interviews with 15 men suffering from primary hyperhidrosis resulted in the theme: To be captured in a filthy body. The experiences of men with excessive sweating were thus interpreted as stigmatising. Stigma has a negative effect on mental health which reinforces our findings in quantitative studies when investigating quality of life. It is our assumption that the symptoms act as a vicious circle reducing quality of life, stigmatising the individual and limiting daily interactions. Addressing hyperhidrosis with information when the disease debuts in young people could reduce the stigma and enable early intervention via healthcare which may have a significant effect on the life of those affected.
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| 7. |
- van Schaarenburg, Rosanne A., et al.
(författare)
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Marked variability in clinical presentation and outcome of patients with C1q immunodeficiency
- 2015
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Ingår i: Journal of Autoimmunity. - : Elsevier BV. - 0896-8411 .- 1095-9157. ; 62, s. 39-44
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Tidskriftsartikel (refereegranskat)abstract
- Objective: Globally approximately 60 cases of C1q deficiency have been described with a high prevalence of Systemic Lupus Erythematosus (SLE). So far treatment has been guided by the clinical presentation rather than the underlying C1q deficiency. Recently, it was shown that C1q production can be restored by allogeneic hematopoietic stem cell transplantation. Current literature lacks information on disease progression and quality of life of C1q deficient persons which is of major importance to guide clinicians taking care of patients with this rare disease.Methods: We performed an international survey, of clinicians treating C1q deficient patients. A high response rate of >70% of the contacted clinicians yielded information on 45 patients with C1q deficiency of which 25 are published.Results: Follow-up data of 45 patients from 31 families was obtained for a median of 11 years after diagnosis. Of these patients 36 (80%) suffer from SLE, of which 16 suffer from SLE and infections, 5 (11%) suffer from infections only and 4 (9%) have no symptoms. In total 9 (20%) of the C1q deficient individuals had died. All except for one died before the age of 20 years. Estimated survival times suggest 20% case-fatality before the age of 20, and at least 50% of patients are expected to reach their middle ages.Conclusion: Here we report the largest phenotypic data set on C1q deficiency to date, revealing high variance; with high mortality but also a subset of patients with an excellent prognosis. Management of C1q deficiency requires a personalized approach.
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