| 1. |
- Falk Kieri, Catarina, et al.
(författare)
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EDAR-induced hypohidrotic ectodermal dysplasia : a clinical study on signs and symptoms in individuals with a heterozygous c.1072C > T mutation
- 2014
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Ingår i: BMC Medical Genetics. - : BioMed Central. - 1471-2350. ; 15, s. 57-
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Mutations in the EDAR-gene cause hypohidrotic ectodermal dysplasia, however, the oral phenotype has been described in a limited number of cases. The aim of the present study was to clinically describe individuals with the c.1072C > T mutation (p. Arg358X) in the EDAR gene with respect to dental signs and saliva secretion, symptoms from other ectodermal structures and to assess orofacial function.METHODS: Individuals in three families living in Sweden, where some members had a known c.1072C > T mutation in the EDAR gene with an autosomal dominant inheritance (AD), were included in a clinical investigation on oral signs and symptoms and self-reported symptoms from other ectodermal structures (n = 37). Confirmation of the c.1072C > T mutation in the EDAR gene were performed by genomic sequencing. Orofacial function was evaluated with NOT-S.RESULTS: The mutation was identified in 17 of 37 family members. The mean number of missing teeth due to agenesis was 10.3 ± 4.1, (range 4-17) in the mutation group and 0.1 ± 0.3, (range 0-1) in the non-mutation group (p < 0.01). All individuals with the mutation were missing the maxillary lateral incisors and one or more of the mandibular incisors; and 81.3% were missing all four. Stimulated saliva secretion was 0.9 ± 0.5 ml/min in the mutation group vs 1.7 ± 0.6 ml/min in the non-mutation group (p < 0.01). Reduced ability to sweat was reported by 82% in the mutation group and by 20% in the non-mutation group (p < 0.01). The mean NOT-S score was 3.0 ± 1.9 (range 0-6) in the mutation group and 1.5 ± 1.1 (range 0-5) in the non-mutation group (p < 0.01). Lisping was present in 56% of individuals in the mutation group.CONCLUSIONS: Individuals with a c.1072C > T mutation in the EDAR-gene displayed a typical pattern of congenitally missing teeth in the frontal area with functional consequences. They therefore have a need for special attention in dental care, both with reference to tooth agenesis and low salivary secretion with an increased risk for caries. Sweating problems were the most frequently reported symptom from other ectodermal structures.
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| 2. |
- Hajdarevic, Senada, et al.
(författare)
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Coping styles in decision making among men and women diagnosed with malignant melanoma
- 2013
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Ingår i: Journal of Health Psychology. - : Sage Publications. - 1359-1053 .- 1461-7277. ; 18:11, s. 1445-1455
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Tidskriftsartikel (refereegranskat)abstract
- Early care seeking is important for prognosis of malignant melanoma. Coping styles in decision-making to seek care can relate to prognosis since avoidant strategies could delay care seeking. The aim of this study was to compare self-reported coping styles in decision-making between men and women diagnosed with malignant melanoma. We used the Swedish version of the Melbourne Decision-Making Questionnaire to assess coping styles. Men generally scored higher in buck-passing while women and those living without a partner scored higher in hypervigilance. This knowledge could be used in the development of preventive programmes with intention to reach those who delay care seeking.
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| 3. |
- Hajdarevic, Senada, et al.
(författare)
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Health care delay in malignant melanoma : various pathways to diagnosis and treatment
- 2014
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Ingår i: Dermatology Research and Practice. - : Hindawi Publishing Corporation. - 1687-6105 .- 1687-6113. ; , s. 294287-
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Tidskriftsartikel (refereegranskat)abstract
- We aimed to describe and compare patients diagnosed with malignant melanoma (MM), depending on their initial contact with care andwith regard to age, sex, andMMtype and thickness, and to explore pathways and time intervals (lead times) between clinics from the initial contact to diagnosis and treatment.The sample from northern Sweden was identified via the Swedish melanoma register. Data regarding pathways in health care were retrieved from patient records. In our unselected population of 71 people diagnosedwith skinmelanoma of SSMandNMtypes, 75%of patients were primarily treated by primary health-care centres (PHCs). The time interval (delay) from primary excision until registration of the histopathological assessment in the medical records was significantly longer in PHCs than in hospital-based and dermatological clinics (Derm). Thicker tumors were more common in the PHC group. Older patients waited longer times for wide excision. Most MM are excised rapidly at PHCs, but some patients may not be diagnosed and treated in time. Delay of registration of results from histopathological assessments within PHCs seems to be an important issue for future improvement. Exploring shortcomings inMMpatients’ clinical pathways is important to improve the quality of care and patient safety.
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| 4. |
- Hajdarevic, Senada, et al.
(författare)
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Malignant melanoma : gender patterns in care seeking for suspect marks
- 2011
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Ingår i: Journal of Clinical Nursing. - : Wiley-Blackwell. - 0962-1067 .- 1365-2702. ; 20:17-18, s. 2676-2684
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Tidskriftsartikel (refereegranskat)abstract
- Aims and objectives. Gender patterns in self-detection of melanoma are not sufficiently highlighted in the literature. The aim of the study was to identify specific patterns in the decision-making process to seek care for suspect melanoma, as narrated by women and men.Background. Females have a more favourable prognosis than males and also a higher level of perceived susceptibility and a higher level of knowledge about melanoma. Women are, furthermore, more prone to participate in screening.Method. Thirty patients (15 women and 15 men) with a mean age of 55.5 years and diagnosed with malignant melanoma were interviewed about their decisions to seek care for suspect skin marks. The interviews were transcribed and analysed with qualitative content analysis.Results. Care-seeking behaviour for suspect melanoma was influenced by gender constructions. Men seldom or never acknowledged interest in attention to bodily changes, but when they became aware of changes, they often took a quick decision and sought an expert's assessment. Men were compliant with wives' and relatives' advice about seeking care. All women reported that they paid attention to bodily changes, but they often delayed care seeking, due to family responsibilities and emotional struggles. The women also attempted self-care remedies, such as applying ointment, before seeking professional care.Conclusions. There are gender-specific patterns that may influence decision making in the care-seeking process. Such patterns are important to identify, since health care professionals must take these factors into account in communicating with men and women.Relevance to clinical practice. Nurses and in particular those working in telephone counselling, are often at the frontlines, deciding who can have access to health services. They are ideally placed to tackle the issue of gender constructions in the development of effective health care services.
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| 5. |
- Hajdarevic, Senada
(författare)
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Patient and health care delays in malignant melanoma
- 2012
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Unlike other cancers, malignant melanoma (MM) is generally visible and can be easily and effectively cured if treated in time. Optimal cure of MM requires early detection, diagnosis, and treatment, which improves prognosis. However, patients as well as the health care organization and its professionals contribute to delayed treatment in various ways. Aims and objectives: The general aim of this PhD thesis was to explore reasons for delay in care seeking, diagnosis, and treatment of malignant melanoma. The specific objectives to be addressed were To explore patients’ decision making about seeking care for malignant melanoma To identify specific patterns in the decision-making process to seek care for suspect melanoma, as narrated by women and men To compare self-reported decision making coping styles between men and women in various ages, who live with or without a partner and are diagnosed with various stages of malignant melanoma in northern Sweden. To describe and compare patients diagnosed with MM, depending on their initial contact with care, and with regard to age, sex, and MM type and thickness, and to explore pathways and time intervals between clinics from the initial contact to diagnosis and treatment. Methods: In studies I and II, 21 and 30 patients, respectively, were interviewed about their decision making to seek care for MM. Study II focused on gender patterns in this decision making. The interviews were analysed using Grounded Theory (I) and qualitative content analysis (II). Study III included 270 people with MM who completed a translated questionnaire (Melbourne Decision Making Questionnaire) about coping styles in decision making. In study IV the pathways and time delay in health care for 71 people with MM were explored. Studies I and II were qualitative, whereas studies III and IV were quantitative. Results: In study I, the insights into severity and feelings of fear and existential threat were identified as key motivators for patients to decide to seek care for a suspected melanoma. Results in study II showed that gender constructions influenced the care-seeking behaviour. Women acknowledged the skin changes and attempted self-care first. They delayed care seeking due to family responsibilities. Men seldom acknowledged the suspicious skin change, but sought care immediately after prompting, and most often complied with relatives’ advice to seek care. Study III showed that men generally scored higher in buck-passing, while women and those living without a partner scored higher in hypervigilance. Participants with nodular melanoma (NM), a rapid-growing form of MM, scored higher in vigilance than those diagnosed as in situ melanoma. No correlation was found between tumour thickness and coping styles. Some differences concerning treatment of MM were found in study IV between people who initially had sought care at primary health care centres (PHC) and those who had sought care at dermatological and specialist clinics (Derm). Thicker tumours as well as NM were more common in the PHC group. A larger proportion of patients from PHCs were primarily excided within the primary health care; however, almost all of them were later referred to surgical clinics for wide excision. Patients within the PHC group also had to wait longer for the registered results of histopathological assessments. In general, women waited a shorter time for primary excision, and older people waited longer for wide excision. Conclusions: Time delay of diagnosis and treatment of MM is still common, and crucial to decrease. Future interventions should include gender aspects to influence people to seek care earlier. In health care, time delay could be decreased by facilitating access for patients with suspected skin melanomas, but also by reducing unnecessary referrals. Moreover, organizational changes whereby general practitioners and primary health care nurses are supported in using new technology for faster diagnoses and management of MM in collaboration with specialist clinics should be considered. Easy access and frequently used guidelines for MM could further decrease delay. Lastly, more efficient transfer and registration of laboratory results and referrals could decrease delay and improve patient safety.
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| 6. |
- Hajdarevic, Senada, et al.
(författare)
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Patients' decision making in seeking care for suspected malignant melanoma
- 2010
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Ingår i: Journal of Nursing and Healthcare of Chronic Illness. - : Wiley-Blackwell. - 1752-9816 .- 1752-9824. ; 2:2, s. 164-173
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Tidskriftsartikel (refereegranskat)abstract
- Aim. To explore patients' decision making about seeking care for malignant melanoma (MM).Background. Unlike other cancers, MM is generally visible and can be easily and cheaply cured if treated in time. It is the delay in diagnosis, most often attributable to the patient rather than to care providers, that results in mortality. Self-examination of suspicious lesions is important, but it is not a guarantee of immediate care-seeking, nor is early detection and increased melanoma awareness associated with early care-seeking.Method. During 2009, men (n = 10) and women (n = 11) diagnosed with malignant melanoma were interviewed within two years after excision and the text was analysed according to Grounded Theory.Results. The perception of a critical level of severity, feelings of fear and threat were found to be a key motivator for patients to seek care for suspected melanomas; as soon as sufficient insight into the severity of the disease was achieved, the patient reached a turning point and sought care immediately.Conclusions. Most of the participants described the process from the discovery of the lesion to the decision to seek care as a time-consuming inner negotiation about the severity of the disease, personal and social considerations, and interactions with the healthcare system.Relevance to clinical practice. We analysed the complex reasoning of the patients leading up to the turning point when they sought care. This study illustrates for caregivers the importance of simplifying the pathways to care, emphasising the seriousness of MM, and taking worried patients seriously from their first contact with health care. Health professionals, through their attitudes in contact with patients, can either facilitate or obstruct the patient's decision making process.
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| 7. |
- Hägg, David, 1984-, et al.
(författare)
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The higher proportion of men with psoriasis treated with biologics may be explained by more severe disease in men
- 2013
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Ingår i: PLOS ONE. - : Public library of science. - 1932-6203. ; 8:5, s. e63619-
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: Moderate to severe psoriasis, once regarded as merely a skin disease, is today seen as an inflammatory systemic disease. The sex ratio of the prevalence of psoriasis is balanced. In recent years several reports have documented that men receive more systemic or UV treatment than women, and different hypotheses were made. In PsoReg, the national registry for systemic treatment of psoriasis in Sweden, we have, like other European registries, observed a predominance of men (59%), especially of men treated with biologics (63%). Biologics are a relatively new group of very effective but high-priced drugs. The objective of this study was to analyse if women are discriminated by not having the same access to the high-priced biologics.DESIGN: Population based cohort study using data from a nationwide quality register of psoriasis patients.POPULATION: 2294 patients with moderate to severe psoriasis receiving systemic treatment from a specialist in dermatology.MAIN OUTCOME MEASURES: Time to initiation of biologic treatment. A multiple Cox proportional hazard's regression was performed, with time to initiating a biologic treatment as the outcome in order to assess the independent role of the patient's sex in initiating such therapy. The psoriasis severity was defined as a time-varying variable.RESULTS: Men had more severe psoriasis than women according to the Psoriasis Area and Severity Index (PASI), regardless of age at enrolment, and throughout the study period. The analysis in the multiple Cox regression show that age, psoriasis severity and psoriasis arthropathy were relevant factors for initiating biologic therapy, whereas sex is not.CONCLUSIONS: Although as many women as men are believed to suffer from psoriasis, men seem to be more severely affected by psoriasis. The asymmetry in allocation of biologic therapy thereby probably reflects the differing disease activity between the sexes, and is not a discrimination against women per se.
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| 8. |
- Norlin, Jenny, 1982-
(författare)
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Effectiveness and costs of new medical technologies : register-based research in psoriasis
- 2013
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Psoriasis is a chronic, immunological and systemic disease with an estimated prevalence of about 2-3 percent. Psoriasis is associated with the joint disease psoriasis arthropathy. There are several treatments options available for psoriasis and patients with moderate to severe psoriasis generally need systemic agents. In 2004 biologics were introduced for patients with moderate to severe psoriasis in Sweden.The overall objective of this thesis was to assess the relationship between Health Related Quality of Life (HRQOL) and clinical outcome measures in psoriasis patients, to analyse the effectiveness of biologics in psoriasis in everyday clinical practice and to explore how costs of the psoriasis population changed after the introduction of biologics in Sweden.Methods: Research was based on national administrative registers and PsoReg, the Swedish registry for systemic treatment of psoriasis. In a cross-sectional study (paper I) the three outcome measures: the generic HRQOL measure EQ-5D, the dermatology specific HRQOL measure the Dermatology Life Quality Index (DLQI) and the clinical measure of skin involvement, Psoriasis Area and Severity Index (PASI), were analysed by demographic characteristics. The generic EQ-5D among psoriasis patients was compared to previously published values for the general population in Sweden. Relationships between measures were examined with correlation tests and regression analysis. A longitudinal study included patients registered in PsoReg who switched to a biologic agent for the first time during registration (paper II). The three outcomes EQ-5D, DLQI, and PASI were analysed before and after switch in the overall patient group and in subgroups. The relative effectiveness of continuing with the standard care of conventional treatment compared to switching from standard care to biologics was analysed in patients with moderate to severe psoriasis (paper III). Patients in PsoReg were matched with propensity scores and average treatment effects were estimated. The estimated outcomes were the change of EQ-5D, DLQI, and PASI. Patients were identified in national registers at the National Board of Health and Welfare when analysing costs; either by a registration of a psoriasis diagnosis in the national patients register and/or by a registration in the prescribed drugs register of a topical treatment with calcipotriol, a substance which has the indication psoriasis only (paper IV). Direct costs included patients’ visits in specialist health care and prescribed drugs used for psoriasis treatment, retrieved from the national patients register and the prescribed drugs register, respectively. Indirect costs included productivity loss in terms of sick leave and disability pension, which estimated as excess costs compared to controls. Controls were selected from the normal population and matched on sex, age and municipality. Productivity loss was estimated based on data from the Longitudinal integration database for health insurance and labour market studies at Statistics Sweden.Results: Patients with moderate to severe psoriasis had significantly lower HRQOL in EQ-5D than the general population (paper I). Women rated their HRQOL lower than men, even though men had more severe clinical skin involvement than women. (paper I). The generic measure EQ-5D and the dermatology-specific DLQI had moderate correlations whereas EQ-5D had low correlation with the clinical measure PASI (paper I). Patients who switched to a biologic agent during registration in PsoReg had significant improvements in all outcomes (paper II). Patients who fulfilled the criteria for moderate to severe psoriasis had the highest benefits of the biologic agents (paper II). The matched conventionally and biologically treated patients with moderate to severe psoriasis were essentially equal in important observable variables (paper III). The subgroup of patients not responding to conventional treatment had high potential benefits of biologic agents (paper III). Individuals with psoriasis had sick leave and disability pension to a larger extent than their matched controls (paper IV). Direct costs increased, whereas the indirect costs of productivity loss decreased between 2006 and 2009 (paper IV).Conclusion: Psoriasis is associated both with direct costs and indirect costs, and it has a negative impact on patients’ HRQOL. When evaluating psoriasis treatments and making decisions about treatment guidelines, both generic, dermatology-specific HRQOL measures, and clinical measures are necessary; as they answer to different needs. Although dependent on data quality, generalisability, and current pricing, results suggest that conventional treatments are suitable as first line and biologic agents as second line treatment. Results indicate that the different types of systemic treatments are not allocated optimally among patients with psoriasis in Swedish clinical practice.
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| 9. |
- Norlin, Jenny M, et al.
(författare)
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Analysis of three outcome measures in moderate to severe psoriasis : a registry-based study of 2450 patients
- 2012
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Ingår i: British Journal of Dermatology. - : Wiley-Blackwell. - 0007-0963 .- 1365-2133. ; 166:4, s. 797-802
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Tidskriftsartikel (refereegranskat)abstract
- Background: As moderate to severe psoriasis is a systemic disease with large effects on health related quality of life (HRQOL) generic measures that include overall health, not only skin involvement, are necessary. The knowledge about the relationship between the generic preference-based EQ-5D and dermatology-specific measures in psoriasis is limited.Objective: The objective was to analyse EQ-5D, the Dermatology Life Quality Index (DLQI) and Psoriasis Area and Severity Index (PASI) in patients with moderate to severe psoriasis in Swedish clinical practice by demographic characteristics, to compare EQ-5D among patients to Swedish population values, and to analyse the relationships between EQ-5D, DLQI and PASI.Methods: This observational cohort study was based on PsoReg, the Swedish National Registry for Systemic Treatment of Psoriasis. EQ-5D among psoriasis patients was compared to a defined general population in Sweden, retrieved from a previous study. Relationships between measures were examined with correlation tests and regression analysis.Results: 2450 patients (men n=1479, women n=971) were included. Median EQ-5D, DLQI and PASI was 0.769, 4 and 4.7, respectively. Psoriasis patients had a significantly lower EQ-5D compared to the defined general population. EQ-5D correlated moderately with DLQI (-0.55) and weakly with PASI (-0.25) (p<0.001).Conclusions: When assessing psoriasis treatments and making decisions about treatment guidelines and resource allocation, EQ-5D, DLQI and PASI provide a useful set of complementary tools, answering to different needs. If EQ-5D is not included in the original trial the second best option in cost-effectiveness studies is to use mapping between DLQI and EQ-5D.
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| 10. |
- Norlin, Jenny M, 1982-, et al.
(författare)
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Switch to Biological Agent in Psoriasis Significantly Improved Clinical and Patient-Reported Outcomes in Real-World Practice
- 2012
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Ingår i: Dermatology. - : S. Karger AG. - 1421-9832 .- 1018-8665. ; 225:4, s. 326-332
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Tidskriftsartikel (refereegranskat)abstract
- Background: Although clinical studies have shown efficacy of biological agents in moderate to severe psoriasis, observational studies of real-world effectiveness are rare. Objective: To analyse the psoriasis area and severity index (PASI) and quality of life by the EQ-5D questionnaire and dermatology quality of life index (DLQI) in psoriasis patients who switched from conventional systemic treatment to biological agents in clinical practice. Furthermore, to analyse patient groups with the highest benefit of biological agents. Methods: Longitudinal, observational study based on the Swedish National Registry for Systemic Treatment of Psoriasis, PsoReg. Outcomes of biological-naive patients who switched to a biological agent (n = 267) were analysed before switch and at the first follow-up. Results: Patients significantly improved in EQ-5D, DLQI and PASI (p < 0.001). Patients with DLQI >= 10 and/or PASI >= 10 had the greatest benefits from biological agents in terms of EQ-5D. Conclusions: Patients with moderate to severe psoriasis benefit from biological agents in clinical practice; the patients with the highest benefits were those with high pretreatment PASI and DLQI scores. Copyright (c) 2013 S. Karger AG, Basel
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