Establishment and Utility of SwedAD: A Nationwide Swedish Registry for Patients with Atopic Dermatitis Receiving Systemic Pharmacotherapy.

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.

Hyperhidrosis - Sweating Sites Matter: Quality of Life in Primary Hyperhidrosis according to the Sweating Sites Measured by SF-36.

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.

Prevalence and Characteristics of Hyperhidrosis in Sweden: A Cross-Sectional Study in the General Population.

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.

Marked variability in clinical presentation and outcome of patients with C1q immunodeficiency.

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.

Impostor phenomenon is a common feature among individuals with primary hyperhidrosis.

Background: Primary hyperhidrosis consists of excessive focal sweating. Affected individuals camouflage the sweating on their body, avoiding stigmatisation. Hence, misrepresentation in social interactions is a common feature in patients with hyperhidrosis. The aim of this study was to investigate impostor phenomenon, perfectionism, self-compassion, stress and anxiety among individuals with primary hyperhidrosis. Methods: A cross-sectional study was conducted at our clinic among 100 participants with axillary and palmar primary hyperhidrosis. The questionnaire contained a hyperhidrosis part and Perceived Stress Scale-4, Generalised Anxiety Disorder Scale-2, Clinical Perfectionism Questionnaire-6, Self-Compassion Scale Short form and Clance Impostor Phenomenon Scale. Descriptive statistics was used for analyses of categorical variables. As data were normally distributed independent t-test and one-way analysis of variance with post hoc Tukey test were used to compare the mean values for the questionnaires with other variables. Pearson's correlation was used, and a forward multiple linear regression model was performed to predict presence of impostor phenomenon with gender, age and other scales in this study. Results: Impostor phenomenon occurred in almost half of our patients (48%) with hyperhidrosis. While feelings of impostor phenomenon were more common in women, there was no difference between gender regarding its intensity levels (p = 0.07). In addition, we found a significant (p < 0.001) negative correlation between impostor phenomenon and self-compassion, while feelings of impostoer phenomenon increased with stress, anxiety and perfectionism (p < 0.001). Conclusions: Feelings of impostor phenomenon was found in 48% of individuals with hyperhidrosis which indicates that it is a common feature in this patient group. Future research is warranted regarding the prevalence of impostor phenomenon in hyperhidrosis and other medical conditions, among men and women, seeking medical healthcare. Psychological interventions in hyperhidrosis may be beneficial both for the individual and in public health, by facilitating management of patients' daily lives and saving considerable resources in healthcare regarding pharmacological interventions and medical consultations.

An uncertain uphill battle - experiences and consequences of living with lipedema.

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 condition", "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 healthcare awareness regarding difficulties experienced by patients with lipedema.

Reconstituted and frozen botulinum toxin A is as effective and safe as fresh for treating axillary hyperhidrosis: A retrospective study.

The use of reconstituted and frozen left-over botulinum toxin A, for treatment of patients with axillary hyperhidrosis seems to be common practice in healthcare. Thus, the objective of this study was to investigate the efficacy and safety of frozen and thawed versus fresh reconstituted abobotulinum toxin (Dysport®) and onabotulinum toxin (Botox®) in the treatment of axillary hyperhidrosis. A retrospective study was conducted analysing efficacy and data from pre- and 24 weeks post-treatment questionnaires together with medical records of individuals with moderate to severe axillary hyperhidrosis. The patients had received fresh prepared botulinum toxin A in their right axilla while frozen and thawed botulinum toxin A had been administered in their left axilla. Treatment was conducted at our Hyperhidrosis Clinic, Umeå University Hospital, Sweden 2019-2021. Pre- and post-treatment questionnaires from 106 patients were analysed. The patients were 18 to 55 years old, with a mean age of 30.7 ± 9.9 years. No significant differences in patient-reported variables, Hyperhidrosis Disease Severity Scale and VAS 10-point scale, were found between the different preparations (frozen compared to fresh) for abobotulinum toxin and onabotulinum toxin, before treatment and at 6 months follow-up. Multivariable regression analysis resulted in no significant difference regarding side-effects between the preparations or brands of botulinum toxin. The findings of this study support our clinical experience that both abobotulinum toxin and onabotulinum toxin, reconstituted, frozen and thawed, seem to be as effective and safe as fresh prepared botulinum toxin when treating axillary hyperhidrosis. Our findings indicate that left-over preparations of abo- and onabotulinum toxins, stored and frozen for up to 6 months, is a cost-and time-effective way of handling botulinum toxin for treatment of axillary hyperhidrosis.

'Excessive sweating is not a feminine thing': A qualitative study of women's experiences suffering from primary hyperhidrosis.

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.

Navigating in the fog. Facing delays, rejection and ignorance when seeking help for primary hyperhidrosis.

Primary hyperhidrosis (PH) is a disease characterized by focal and excessive sweating.Purpose: The aim of this study was to describe the experiences of men and women with PH when seeking help for their condition.Method: A qualitative interview study with 30 men and women diagnosed with PH was conducted. Data was inductively analysed using manifest and latent content analysis.Results: The analysis resulted in a theme: Navigating in the fog, based on the categories doubtful encounters with health care professionals, helpful encounters with health care professionals, delays due to inadequate knowledge, and supported urge for help.Conclusions: Deficient knowledge and understanding about PH create a sense of resignation in individuals, resulting in delay of seeking treatment. Support from others, life-changing events, and finding information about PH were important motivating factors in seeking help and demanding access to treatment. A holistic approach towards patients with PH is important to reduce stigma and acknowledge the problems that are encountered in their daily lives. Educating health care professionals and students so that patients can be identified and assessed without delay and making information available about PH in schools and pharmacies could improve the general knowledge and facilitate obtaining treatment for individuals with PH.

The Meaning of Living for Men Suffering From Primary Hyperhidrosis.

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.

Primary hyperhidrosis: Implications on symptoms, daily life, health and alcohol consumption when treated with botulinum toxin.

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.