| 1. |
- Alsterholm, Mikael, 1977, et al.
(författare)
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Establishment and utility of SwedAD : a nationwide Swedish registry for patients with atopic dermatitis receiving systemic pharmacotherapy
- 2023
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Ingår i: Acta Dermato-Venereologica. - : Medical Journals Sweden AB. - 0001-5555 .- 1651-2057. ; 103
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Tidskriftsartikel (refereegranskat)abstract
- SwedAD, a Swedish nationwide registry for patients with atopic dermatitis receiving systemic pharmacotherapy, was launched on 1 September 2019. We describe here the establishment of a user-friendly registry to the benefit of patients with atopic dermatitis. By 5 November 2022, 38 clinics had recorded 931 treatment episodes in 850 patients with an approximate national coverage rate of 40%. Characteristics at enrolment included median Eczema Area and Severity Index (EASI) 10.2 (interquartile range 4.0, 19.4), Patient-Oriented Eczema Measure (POEM) 18.0 (10.0, 24.0), Dermatology Life Quality Index (DLQI) 11.0 (5.0, 19.0) and Peak Itch Numerical Rating Scale-11 (NRS-11) 6.0 (3.0, 8.0). At 3 months, median EASI was 3.2 (1.0, 7.3) and POEM, DLQI, and NRS-11 were improved. Regional coverage varied, reflecting the distribution of dermatologists, the ratio of public to private healthcare, and difficulties in recruiting certain clinics. This study highlights the importance of a nationwide registry when managing systemic pharmacotherapy of atopic dermatitis.
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| 2. |
- Dahlberg, Johan, et al.
(författare)
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An uncertain uphill battle : experiences and consequences of living with lipedema
- 2023
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Taylor & Francis. - 1748-2623 .- 1748-2631. ; 19:1
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: To describe and analyse experiences of living with lipedema. Methods: Individual, semi-structured interviews with a purposive sample of 12 women diagnosed with lipedema and analysed by qualitative content analysis utilizing an inductive approach.Results: The overarching theme, “An uncertain uphill battle against a divergent body and societal ignorance”, covers the experiences of living with lipedema and is based on five categories; “Captivated by a disintegrating body”, “Face the impairments of a chronic condi-tion”, “Experience social exclusion”, “Need emotional support to go on” and “Mull over an insecure future”. The women felt entrapped within their bodies and experienced social exclusion due to the chronic symptoms and the progressive body shape alteration caused by their illness. Having experienced deficient information on the illness, varying support from other people, and a deteriorating economic situation, the women face an uncertain future.Conclusions: Symptoms and restrictions caused by lipedema affect women’s livelihood and future, as there are no indications for disease improvement. Preventive work aimed at reducing health deterioration should be a priority. More research is needed to raise health-care awareness regarding difficulties experienced by patients with lipedema.
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| 3. |
- 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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| 4. |
- Rosendahl, Karolina, et al.
(författare)
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Characteristics of women seeking care at a vulvar clinic : a study of 600 patients during a 17‐year period
- 2022
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Ingår i: JEADV Clinical Practice. - : John Wiley & Sons. - 2768-6566. ; 2:1, s. 73-79
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Tidskriftsartikel (refereegranskat)abstract
- Background: Symptoms from the vulva and vagina affect about one-third of all women and have a negative influence both on sexual health and psychosocial well-being. Research regarding vulvar diseases is sparse and there is a need for a better understanding of women seeking care for vulvar diseases.Objectives: The objectives of this descriptive study were to investigate symptoms, signs, and background characteristics of women attending our multidisciplinary vulvar clinic at the University Hospital, Umeå, Sweden between 2005 and 2021.Methods: We conducted a prospective study by using a vulvar-specific questionnaire and reviewed the medical records to collect supplementary data.Results: A total of 600 women participated. The most common symptom among all participants was dyspareunia (67.6%). Pain diagnoses dominated in the younger population while inflammatory diseases were most common among patients 40 years of age or more. We found a significant association between dyspareunia and negative experiences of gynaecological examination (p < 0.001) as well as between pruritus and not having a regular contact with a psychologist (p < 0.05).Conclusions: Women seeking care at our vulvar clinic exhibit a complicated and complex set of symptoms intertwined with many aspects of life. Increasing awareness among healthcare professionals, an experienced team at the clinic, and a multidisciplinary approach regarding the symptoms and needs of women with vulvar conditions are important to optimise care and treatment. Clinicians must be aware that vulvar diseases may have different symptomatology due to age. It is also important to highlight that the symptomatology presented by patients attending for vulvar diseases, has changed during the past decade.
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| 6. |
- Shayesteh, Alexander, et al.
(författare)
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'Excessive sweating is not a feminine thing' : a qualitative study of women's experiences suffering from primary hyperhidrosis
- 2021
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Ingår i: PLOS ONE. - : Public Library of Science. - 1932-6203. ; 16:7
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Tidskriftsartikel (refereegranskat)abstract
- Background: Primary hyperhidrosis, excessive focal sweating is a common disease equally affecting men and women. Women tend to seek care more often and assess being more affected by hyperhidrosis in their daily life. The aim of this study was to explore experiences of living with primary hyperhidros in a sample of 15 women.Methods: Individual, semi-structured interviews with a purposive sample of 15 women diagnosed with primary hyperhidrosis and analysed by qualitative content analysis utilising an inductive approach.Results: The analysis resulted in a theme, constantly guarding the female image, based on three categories, misfitting the feminine norms, avoiding the attention of others and passing like any woman. Primary hyperhidrosis in women disrupted the ideal feminine appearance. Wearing clothes that concealed hyperhidrosis and distancing from social gatherings, in combination with negative remarks by others, created stress and anxiety and had a negative effect on self-esteem. Women felt poorly understood by others regarding the extent of their sweating and were misunderstood in intimate situations while trying to reduce the sweat production. Choices regarding education and career opportunities were affected, since being exposed and receiving attention due to primary hyperhidrosis was unwanted. Treatment with botulinum toxin liberated women from excessive sweating and removed a social handicap they described living with.Conclusion: Primary hyperhidrosis in women disrupts the feminine appearance, lowers self-esteem and hinders social interactions. Clinicians assessing primary hyperhidrosis need to be aware that women may report the impairments from primary hyperhidrosis as being more associated with body image and appearance than with functional reductions in daily life. Educating patients, providing accurate information regarding the disease via media and cooperating with patient groups are important for increasing awareness and achieving progress in care for women with primary hyperhidrosis.
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| 7. |
- Shayesteh, Alexander, 1975-, et al.
(författare)
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Experiences of men living with hyperhidrosis : Content analysis of interviews with 15 men suffering from primary hyperhidrosis
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Annan publikation (övrigt vetenskapligt/konstnärligt)abstract
- Primary hyperhidrosisreduces quality of life and interferes with daily activities of those affected.Data regarding experiences of men living with this disease is scarce. The aimof this study was to explore men’s experiences of living with primaryhyperhidrosis. Interviews with 15 men were performed at the Department ofDermatology and Venereology, Umeå University Hospital. Thetranscripted data was analysed by qualitative content analysis. The analysisrevealed one theme: To be captured in a filthy body which was based on five categories and 12 sub-categories. In men with hyperhidrosis there is a daily struggle to hide or to manage the excessive sweatingand the disease was associated with being unclean or filthy. Insufficientunderstanding from others and reminders of the symptoms can be stressful,contribute to a lower self-esteem and make the individual resign fore theillness. The disease is stigmatising and has a negative effect on daily life. Menwith hyperhidrosis also experienced a lack of understanding when they discussedthe sweating problems with family members. Our results reinforce publishedquantitative studies showing that the disease has an impact on the mentalhealth of those affected. It is unknown if women are approached in a differentway by family or society in case of disclosure. Further research in women couldreveal and possibly explain the disparity that exists between the genders in seekinghealthcare. Meanwhile public education and informing children at school, at anage when the disease debuts could decrease stigmatisation and increase thewillingness to seek professional help.
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| 9. |
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| 10. |
- 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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