Adherence with metreleptin therapy and health self-perception in patients with lipodystrophic syndromes.

BACKGROUND: Although metreleptin replacement therapy was shown to improve metabolic alterations in lipodystrophic syndromes, patients' adherence and satisfaction with treatment have never been evaluated. The 20 patients with lipodystrophic syndromes participating in the French compassionate program of metreleptin therapy filled in a self-questionnaire including an Adherence Evaluation Test, the Treatment Satisfaction Questionnaire for Medication (TSQM®-vII), and items about physical appearance. RESULTS: 15 patients were women, median age was 32.5 years (IQT 25-75 (16.2;49.5), 18 had diabetes. Adherence with metreleptin (one daily subcutaneous injection) was poor in 25%, excellent in 25% and acceptable in 50% of patients. On a 0-to-100 scale, patients' satisfaction scores reached 66.7 (52.1;81.2) for effectiveness, 55.6 (44.4;66.7) for ease/comfort of use, and 83.3 (52.1;83.3) for global satisfaction with metreleptin therapy. Self-reported side effects were frequent injection site reactions 100 (79.2;100). Satisfaction scores did not differ in patients with partial (n = 10) or generalized (n = 10) lipodystrophic syndromes, did not correlate with metabolic improvement, but were significantly higher in compliant patients with fewer side effects. Morphological appearance was reported improved under metreleptin therapy in 13 among 17 patients. CONCLUSIONS: Metreleptin increases health self-perception and decreases morphotype-associated stigmatization in most patients with lipodystrophic syndromes, but poor comfort of use and local side effects weaken adherence.

"We're stuck with what we've got": The impact of lipodystrophy on body image.

AIMS AND OBJECTIVES: To evaluate the impact of lipodystrophy on body image and how this affects patients' daily lives. BACKGROUND: Lipodystrophy refers to a group of rare conditions characterised by generalised or partial lack of body fat and is associated with severe metabolic problems, for example, severe insulin resistance, diabetes and pancreatitis. In addition to its metabolic effect, lack of adipose tissue may have a major impact on appearance and cause distressing physical changes. While global research has focused on diagnosis and management, there is no published work investigating the psychological effects of lipodystrophy on body image. METHODS: Following ethical approval, participants with lipodystrophy were purposively sampled from the National Severe Insulin Resistance Service in Cambridge, UK, and invited to take part in a semi-structured interview. Eleven (10 female, one male) interviews were conducted and digitally recorded. Data were analysed using an inductive thematic approach. RESULTS: Four main themes were identified in the data set; "Always feeling appearance was different," "a better understanding of lipodystrophy is needed," "feeling accepted" and "there's more to lipodystrophy than managing symptoms." Participants spoke of distressing cosmetic effects related to lack of fat tissue and other changes related to lipodystrophy, contributing to negative body image. For some, negative body image led to feelings of worthlessness impacting daily life and adherence to treatment. Psychological support was lacking but desired by participants. CONCLUSION: Lipodystrophy contributes to negative body image affecting patients' daily lives. Patients wanted psychological support alongside medical management. Further research is needed to determine how best to deliver psychological support and to evaluate its impact on well-being and metabolic management. RELEVANCE TO CLINICAL PRACTICE: The effects of rare diseases such as lipodystrophy on appearance can be distressing for patients. Support beyond medical management is needed to improve patients' daily lives and help them to live well with appearance-altering conditions.

Perceived discrimination, self-exclusion and well-being among people with HIV as a function of lipodystrophy symptoms / Discriminación percibida, autoexclusión y bienestar entre las personas con VIH en función de los síntomas de la lipodistrofia

This study examined the effects of perceived discrimination on the well-being of people with HIV and the mediating role of self-exclusion as a function of the participants' symptoms of lipodystrophy. An ex post facto study with a sample of 706 people with HIV was conducted. Selfperception of lipoatrophy and lipohypertrophy, perceived discrimination, self-exclusion and psychological well-being were measured. Results of hierarchical cluster analysis showed participants could be categorized into three groups: no lipodystrophy, mixed syndrome with predominant lipoaccumulation and lipoatrophy. Results of structural equation modeling revealed that the negative effects of perceived discrimination on well-being were mediated to a large extent by self-exclusion. Invariance analysis revealed that the mediating role of self-exclusion was not the same in the three clusters. Complete mediation of self-exclusion in the groups without lipodystrophy and with predominant lipoaccumulation was confirmed. Regarding lipoatrophy, the negative effects of perceived discrimination were greater and only partly mediated by self-exclusion. In conclusion, having lipodystrophy exposed people to more discrimination; lipoatrophy was the most stigmatizing condition (AU)

Este estudio examinó los efectos de la discriminación percibida sobre el bienestar de las personas con VIH y el papel mediador de la autoexclusión en función de los síntomas de lipodistrofia de los participantes. Se realizó un estudio ex post facto con una muestra de 706 personas con VIH. Se midió la autopercepción de lipoatrofia y lipohipertrofia, discriminación percibida, autoexclusión y bienestar psicológico. Los resultados del análisis de agrupamiento jerárquico mostraron que los participantes podían clasificarse en tres grupos: sin lipodistrofia, síndrome mixto con lipoacumulación predominante y lipoatrofia. Los resultados del modelado de ecuaciones estructurales revelaron que los efectos negativos de la discriminación percibida sobre el bienestar estaban mediados en gran medida por la autoexclusión. El análisis de invarianza reveló que el papel mediador de la autoexclusión no era el mismo en los tres grupos. Se confirmó la mediación completa de la autoexclusión en los grupos sin lipodistrofia y con lipoacumulación predominante. Con respecto a la lipoatrofia, los efectos negativos de la discriminación percibida fueron mayores y solo parcialmente mediados por la autoexclusión. En conclusión, tener lipodistrofia expone a las personas a más discriminación; la lipoatrofia fue la condición más estigmatizante (AU)

Exome sequencing reveals a de novo POLD1 mutation causing phenotypic variability in mandibular hypoplasia, deafness, progeroid features, and lipodystrophy syndrome (MDPL).

BACKGROUND: Mandibular hypoplasia, deafness, progeroid features, and lipodystrophy syndrome (MDPL) is an autosomal dominant systemic disorder characterized by prominent loss of subcutaneous fat, a characteristic facial appearance and metabolic abnormalities. This syndrome is caused by heterozygous de novo mutations in the POLD1 gene. To date, 19 patients with MDPL have been reported in the literature and among them 14 patients have been characterized at the molecular level. Twelve unrelated patients carried a recurrent in-frame deletion of a single codon (p.Ser605del) and two other patients carried a novel heterozygous mutation in exon 13 (p.Arg507Cys). Additionally and interestingly, germline mutations of the same gene have been involved in familial polyposis and colorectal cancer (CRC) predisposition. PATIENTS AND METHODS: We describe a male and a female patient with MDPL respectively affected with mild and severe phenotypes. Both of them showed mandibular hypoplasia, a beaked nose with bird-like facies, prominent eyes, a small mouth, growth retardation, muscle and skin atrophy, but the female patient showed such a severe and early phenotype that a first working diagnosis of Hutchinson-Gilford Progeria was made. The exploration was performed by direct sequencing of POLD1 gene exon 15 in the male patient with a classical MDPL phenotype and by whole exome sequencing in the female patient and her unaffected parents. RESULTS: Exome sequencing identified in the latter patient a de novo heterozygous undescribed mutation in the POLD1 gene (NM_002691.3: c.3209T>A), predicted to cause the missense change p.Ile1070Asn in the ZnF2 (Zinc Finger 2) domain of the protein. This mutation was not reported in the 1000 Genome Project, dbSNP and Exome sequencing databases. Furthermore, the Isoleucine1070 residue of POLD1 is highly conserved among various species, suggesting that this substitution may cause a major impairment of POLD1 activity. For the second patient, affected with a typical MDPL phenotype, direct sequencing of POLD1 exon 15 revealed the recurrent in-frame deletion (c.1812_1814del, p.S605del). CONCLUSION: Our work highlights that mutations in different POLD1 domains can lead to phenotypic variability, ranging from dominantly inherited cancer predisposition syndromes, to mild MDPL phenotypes without lifespan reduction, to very severe MDPL syndromes with major premature aging features. These results also suggest that POLD1 gene testing should be considered in patients presenting with severe progeroid features.

People living with HIV on ART have accurate perception of lipodystrophy signs: a cross-sectional study.

BACKGROUND: The prevalence of lipodystrophy ranges from 31 to 65%, depending on the criteria adopted for diagnosis. The usual methods applied in the diagnosis vary from self-perception, medical examination, skinfolds measurements, or even imaging assessment for confirmation of fat distribution changes. Although several methods have been developed, there is no gold standard for characterization of LA and LH, or mixed forms. This study aimed to compare self-reported signs of lipodystrophy with objective measures by skinfolds and circumferences, and to evaluate the prevalence of lipoatrophy (LA) and lipohypertrophy (LH) among subjects living with HIV/AIDS on ART. METHODS: A cross-sectional study enrolled participants living with HIV/AIDS receiving ART, aged 18 years or older from an outpatient health care center, in Southern Brazil. Self-reported body fat enlargement in the abdomen, chest or breasts, and dorsocervical fat pad were used to determine LH, while LA was identified by self-reported fat wasting of the face, neck, legs, arms or buttocks. Measurements were obtained with a scientific caliper for infraorbital, buccal, and submandibular skinfolds, and using an inelastic tape to measure circumferences of waist, hip, neck, and arm. LH and LA were established by the presence of at least one self-reported sign. RESULTS: Comparisons of self-reported signs with objective measurements for men and women were carried out in 815 participants on ART, out of 1240 participants with HIV infection. Self-report of decreased facial fat and sunken cheeks was associated with lower infraorbital, buccal, and submandibular skinfolds. Participants who reported buffalo hump had, on average, greater neck circumference, as well as those who have increased waist circumference also reported abdominal enlargement, but no buttock wasting. Men were most commonly affected by lipoatrophy (73 vs. 53%; P < 0.001), and women by lipohypertrophy (79 vs. 56%; P < 0.001). CONCLUSION: In conclusion, self-reported signs of lipodystrophy and lipoatrophy are prevalent, differ by gender, and are associated with objective measurements in people living with HIV/AIDS.

The Facial Appearance Inventory: Development and Preliminary Evidence for Reliability and Validity in People with HIV and Lipoatrophy.

BACKGROUND: Facial lipoatrophy is common in people on antiretroviral (ARV) regimens for HIV/AIDS and can impair health-related quality of life. OBJECTIVES: We developed the Facial Appearance Inventory (FAI) to measure the impact of ARV-associated facial lipoatrophy. METHODS: Qualitative methods were used to identify key concerns of people with facial lipoatrophy. The major concerns were used to identify 24 items for the FAI. The FAI was administered to a cross-sectional sample of 96 people with HIV and facial lipoatrophy and compared to the established Assessment of Body Change Distress (ABCD) and MOS-HIV questionnaires. RESULTS: Mean age was 48.8 years, 87.5% were men, 69.8% were Caucasian, and 60% had some college education. Mean CD4 count was 435 cells/mm(3). There were few missing data, and the summary score showed no floor or ceiling effects, with a mean (SD) of 25.6 (17.9). Cronbach's alpha for the scale was 0.98. FAI items satisfied criteria for convergent and discriminant construct validity. FAI items were more strongly correlated with mental health domains (R = 0.33) than with physical health domains (R = 0.26) on the MOS-HIV. Patients with greater severity of lipoatrophy had significantly worse scores than those with less severity (James 3-4, vs. James 0-2). There were no significant differences for FAI scores by age group, income group, CD4 cell count, or HIV viral load group. Those with less education and those with darker skin types reported less impairment (P < .05). CONCLUSIONS: The 24-item FAI shows evidence for reliability, validity, and usefulness as a measure of the impact of facial lipoatrophy.

Aerobic capacity and health-related quality of life in adults HIV-infected patients with and without lipodystrophy

Abstract Introduction HIV infection and its therapy which can affect their aerobic capacity and health-related quality of life of patients. Objective We conducted a cross-sectional study to determine if aerobic capacity and health related quality of life was decreased in HIV-infected patients receiving highly active antiretroviral therapy and comparing patients with and without lipodystrophy. Research design and methods HIV-infected patients older than 18 years, and in current use of highly active antiretroviral therapy drugs, were evaluated for blood count, fasting total cholesterol, high density lipoprotein, triglycerides, glucose, HIV viral load and CD4/CD8 counts, body composition, peak oxygen consumption (peak VO2) and metabolic equivalent. Health related quality of life was assessed by using Short Form-36 (SF-36). Statistical analysis was carried out using SPSS version 20.0. Results A total of 63 patients with mean age of 43.1 ± 6.4 years were evaluated, of these 34 (54%) had lipodystrophy. The average peak VO2 (31.4 ± 7.6 mL kg−1 min−1) was significantly lower (p < 0.01) than expected values (37.9 ± 5.6 mL kg−1 min−1) according to the characteristics of the patients. The lipodystrophy group presented with a significant difference in muscle mass, body fat, peak VO2 and metabolic equivalent and in functional capacity domains of SF-36. Conclusion Aerobic capacity values were reduced in HIV-infected patients under highly active antiretroviral therapy when compared to predicted values. Lipodystrophy was associated with reduced aerobic capacity and higher frequency of metabolic syndrome. Lifestyle modification should be a priority in the management of chronic HIV disease.

Aerobic capacity and health-related quality of life in adults HIV-infected patients with and without lipodystrophy.

INTRODUCTION: HIV infection and its therapy which can affect their aerobic capacity and health-related quality of life of patients. OBJECTIVE: We conducted a cross-sectional study to determine if aerobic capacity and health related quality of life was decreased in HIV-infected patients receiving highly active antiretroviral therapy and comparing patients with and without lipodystrophy. RESEARCH DESIGN AND METHODS: HIV-infected patients older than 18 years, and in current use of highly active antiretroviral therapy drugs, were evaluated for blood count, fasting total cholesterol, high density lipoprotein, triglycerides, glucose, HIV viral load and CD4/CD8 counts, body composition, peak oxygen consumption (peak VO2) and metabolic equivalent. Health related quality of life was assessed by using Short Form-36 (SF-36). Statistical analysis was carried out using SPSS version 20.0. RESULTS: A total of 63 patients with mean age of 43.1±6.4 years were evaluated, of these 34 (54%) had lipodystrophy. The average peak VO2 (31.4±7.6mLkg(-1)min(-1)) was significantly lower (p<0.01) than expected values (37.9±5.6mLkg(-1)min(-1)) according to the characteristics of the patients. The lipodystrophy group presented with a significant difference in muscle mass, body fat, peak VO2 and metabolic equivalent and in functional capacity domains of SF-36. CONCLUSION: Aerobic capacity values were reduced in HIV-infected patients under highly active antiretroviral therapy when compared to predicted values. Lipodystrophy was associated with reduced aerobic capacity and higher frequency of metabolic syndrome. Lifestyle modification should be a priority in the management of chronic HIV disease.

Autoimagem corporal em pessoas vivendo com HIV/AIDS e lipoatrofia facial / Body self-image in people living with HIV / AIDS and facial lipoatrophy

antirretrovirais mudou a vida das pessoas que convivem com HIV/AIDS, levando ao aumento da sobrevida, mas também está relacionada à má redistribuição da gordura corpórea e as anormalidades metabólicas, a então chamada síndrome. Dentre as áreas acometidas pela lipoatrofia a face é a região na qual a perda de gordura é mais evidente e impactante, pois as mudanças na imagem corporal podem ser extremamente significativas em termos de bem-estar psicossocial, afetando a qualidade de vida e aumentando o estigma da doença. O objetivo principal do presente trabalho foi identificar e apresentar os aspectos psicossociais relacionados à lipoatrofia facial. Foi realizado um estudo exploratório de revisão da literatura em periódicos publicados em língua portuguesa do Brasil nas bases de dados eletrônicas Scielo, Medline e Lilacs, visando aprofundar o conhecimento do problema a fim de promover reflexão e discussão. Ao longo dos estudos revisados, foi notório que as pessoas que vivem com hiv/aids constroem estratégias de estar no mundo, em um jogo de esconder e mostrar, explicitar ou calar sobre a infecção, o adoecimento e as mudanças corporais causadas por esse processo. Sendo assim, o esconder o corpo e o que ele pode tornar visível é a forma que as essas pessoas têm, muitas vezes, de preservar o segredo sobre a infecção, além da própria negação da doença, evitando atitudes de preconceito em relação à sua condição

Threats to identity: lipodystrophy and identity changes in people with HIV/AIDS (PWA).

BACKGROUND AND AIM: PWA today have to face new problems associated with their disease state. One of these is tied to bodily changes that are related to HAART (lipodystrophy syndrome, LDS). Applying the Identity Process Theory (Breakwell, 1986), this research aimed to study the impact that LDS body changes may have on the identity of PWA. METHOD: One hundred and eight patients (79 M and 29 F, ranging from 35 to 75 years old) at a North Italian clinic completed a questionnaire composed of scales measuring the perception of threats to the identity of PWA, physicians' and patients' assessment of LDS, time from diagnosis, disclosure and perceived social support. RESULTS: Results showed that lipodystrophy changes represent a new aspect of the disease that PWA need to handle in terms of identity: the changes resulted in 'loss of the self' and constituted a particular threat to the dimension of personal identity whereby bodily changes called more into question the principles of self-esteem and distinctness. LDS, however, lead to a multiple identity threat that is aggravated by patients' perception of the severity of their bodily changes and by the perception of a lack of friendship and social support. CONCLUSIONS: The study highlights how complex, cyclical and dynamic are the effects that HIV status can have on the sick person: they are no longer only clinical, but also psychological and psychosocial.

Perceptions of lipodystrophy among PLHIV after 10 years of antiretroviral therapy in Senegal.

Nearly one-third of people living with HIV (PLHIV) and taking HAART develop lipodystrophy in Africa. This article aims to describe how they perceive these disorders and the determinants of these perceptions. It is based on a qualitative study using interviews conducted with 20 patients with clinical lipodystrophy in Dakar, Senegal. Not all of the interviewees complained, though some had clearly visible lipodystrophy. The hypertrophic form seems better tolerated when perceived as overweight, a sign of excess wealth. Atrophic forms sometimes go unnoticed in lean people, but others experience it as stigma, avoid appearing in public, and express significant suffering, especially when symptoms jeopardize their social status. Healthcare systems should take better account of lipodystrophy and its psychosocial effects because they weaken adherence and reduce patients' quality of life.

Effect of Lipodystrophy on the Quality of Life among People Living with HIV (PLHIV) on Highly Active Antiretroviral Therapy.

BACKGROUND: Lipodystrophy is a known adverse effect of highly active antiretroviral therapy (HAART). Lipodystrophy resulting in body dysmorphism can lower the quality of life (QoL) among HAART recipients. The main aim of our study was to find the effect of lipodystrophy on QoL among people living with HIV (PLHIV) on HAART. METHODS: This cross-sectional study was conducted in a tertiary care hospital in south India. The participants were assessed for the presence of lipodystrophy. Their QoL was assessed using HIV-AIDS-targeted QoL questionnaire (HAT-QoL). Statistical analysis was carried out using SPSS version 11.5. RESULTS: Lipodystrophy was present in 21 participants (42%). The QoL among individuals with lipodystrophy was found to be significantly lower in terms of disclosure worries (P = .023) and financial worries (P = .049). CONCLUSIONS: Lipodystrophy adversely affects QoL among PLHIV. There is a need for studies analyzing factors that can potentially improve the QoL in such individuals.

Understanding the experience of reconstructive treatments from the perspective of people who suffer from facial lipoatrophy: a qualitative study.

BACKGROUND: Facial lipoatrophy has been described as the most distressing and stigmatizing expression of the lipodystrophy syndrome, a syndrome that is caused by antiretroviral combination therapy. In recent years, reconstructive treatments (such as poly-l-lactic acid and polyalkylimide) have been increasingly considered for this condition. These treatments allow for facial contours and facial fullness to be restored while being minimally invasive. OBJECTIVE: The main objective of this qualitative research was to explore and describe the experience of people who suffer from facial lipoatrophy, specifically in regard to reconstructive treatments. METHOD: A qualitative design, which incorporates explorative and descriptive attributes, was thought to be an appropriate choice for this research project. The data was collected using semi-structured interviews and was then analyzed following the principles of thematic analysis. PARTICIPANTS: Over a period of three months, 11 men and 1 woman enrolled in the study which was conducted in Montreal (Quebec), Canada. FINDINGS: Overall, participants explained that facial lipoatrophy had forced them into a situation of intense vulnerability by making them recognizable as persons living with HIV/AIDS and discreditable in the eyes of others. In this sense, they were willing to go to great lengths to restore their facial features and regain a sense of normalcy. Findings revealed that people who suffer from facial lipoatrophy engage in a process of reconstruction to reduce the visibility and disruptiveness of their condition but face many uncertainties along the way. CONCLUSIONS: While the findings of this research corroborated what has been previously stated by other researchers about the impact of reconstructive treatments, they also shed light on the consequences of not making these treatments accessible as well as the undocumented realities of those who cannot afford the recommended course of dermal fillers.

A Japanese case with Nasu-Hakola disease of DAP12 gene mutation exhibiting precuneus hypoperfusion.

A 38-year-old Japanese man with Nasu-Hakola disease (NHD) had repeated pathological fractures and frontal lobe symptoms which developed when he was 18 and 26 years old, respectively. Neuropsychological testing showed memory impairment, and in particular, visuo-spatial memory at the age of 35. Furthermore, single-photon emission computed tomography revealed precuneus hypoperfusion. The patient later suffered prolonged convulsive seizures, which left him in a persistent vegetative state. Genetic testing confirmed a heterozygous mutation in the DAP12 gene (a single-base deletion of 141 G in exon 3) specific to NHD. Precuneus dysfunction might contribute to characteristic memory impairment of NHD.

Facial lipoatrophy: appearances are not deceiving.

Lipodystrophy syndrome (LS) has been reported as visible markers that can identify HIV status. Changes in body shape are detrimental in terms of psychological welfare and may affect well-being and increase the stigma associated with HIV disease. In the current study, the psychosocial impact of LS was evaluated. A total of 84 HIV-infected patients receiving antiretroviral therapy and exhibiting dyslipidemia were interviewed in an urban hospital setting in Brazil in 2006 using a standardized questionnaire. Of the 84 patients exhibiting dyslipidemia, 40 patients also exhibited body changes, and of these, 25 had facial lipoatrophy. From a psychosocial perspective, patients presenting with facial lipoatrophy reported alterations in self-image and self-esteem and believed that other people noticed their body changes. The results are relevant for nurses who need to be well-prepared to recognize lipodystrophy, to implement nursing interventions including lifestyle changes, and to provide psychosocial support to patients with LS.

Body image is a major determinant of sexual dysfunction in stable HIV-infected women.

BACKGROUND: Prevalence and factors associated with sexual dysfunction in HIV-positive women are poorly known. METHODS: This was a cross-sectional study in a cohort of HIV-infected women. Clinically stable women were invited to participate in a female sexual dysfunction (FSD) evaluation with Female Sexual Function Index (FSFI) exploring desire, arousal, lubrication, orgasm, pain and satisfaction. An FSFI score <23 was used for defining FSD. Variables evaluated included body appearance satisfaction, interference of body changes with habits, social life and attitudinal aspects of body image, health-related quality of life, hormonal assessment, menopause, cumulative exposure to antiretroviral drug classes and immune-virological parameters. Lipodystrophy was defined according to the HIV Outpatient Study definition. RESULTS: A total of 185 women completed the FSFI. The mean (+/-SD) age was 42 years (+/-5), 27% had CDC stage C, the mean (+/-SD) CD4+ T-cell count was 508 cells/microl (+/-251) and median HIV RNA was 1.7 log10 copies/ml (interquartile range 1.7-2.6). Among 161 evaluable patients, 59 (32%) reported FSD. In a multiple linear regression analysis, desire, arousal and satisfaction domains were associated with interference of body changes with habits, social life and attitudinal aspects of body image (beta = 0.22, 95% confidence interval [CI] 0.06-0.37; beta = 0.29, 95% CI 0.10-0.48; and beta = 0.20, 95% CI 0.02-0.38, respectively). Lubrication and orgasm domains were associated with body image satisfaction (beta = -0.49, 95% CI -0.88 - -0.10 and beta = -0.58, 95% CI -1.00 - -0.16, respectively). No significant associations with sex hormones, CDC stage, CD4+ T-cell count, HIV RNA viral load and cumulative exposure to antiretroviral drug classes were found. In women with FSD, severity of self-perceived abdominal fat accumulation showed a trend towards lower FSFI scores (ANOVA P = 0.02). CONCLUSIONS: FSD was highly prevalent in this cohort. Self-perceived body changes was identified as its major determinant.

Calidad de vida y estrategias de afrontamiento en personas VIH positivas con lipodistrofia / Quality of life and coping strategies in HIV positive people with lipodystrophy

Los objetivos de este estudio fueron dos: 1) Observar si el síndrome de lipodistrofia en personas VIH positivas se relaciona con su calidad de vida, 2) conocer qué estrategias de afrontamiento utilizan las personas con lipodistrofia y analizar si existe alguna relación entre el tipo de estrategia utilizada y la calidad de vida. Se evaluaron a 134 personas infectadas con el VIH que posteriormente se dividieron en dos grupos: sujetos sin lipodistrofia (n=73,54%) y sujetos con lipodistrofia (n=61, 46%). Al comparar la calidad de vida entre los dos grupos, se encontró una diferencia significativa (p=042) en la subescala “malestar emocional” del cuestionario. Los sujetos con lipodistrofia utilizan distintas estrategias de afrontamiento tanto positivas como negativas frente a sus problemas de salud, entre las que predominan “no buscar ayuda en los demás”, “seguir las prescripciones médicas”, “pensar en superarlo uno mismo”, y “mantener la esperanza y sentirse optimista”. Se hallaron relaciones significativas entre las estrategias de afrontamiento utilizadas y todos los niveles de calidad de vida (síntomas, autonomía personal, satisfacción familiar y social y, estado emocional) analizamos mediante las correspondientes subescalas del cuestionario de calidad de vida. En conclusión, la lipodistrofia puede disminuir la calidad de vida a nivel emocional, ante la presencia de determinadas estrategias de afrontamiento

The aims of this study were two: 1) To observe if lipodystrophy syndrome in HIV positive people is related to their quality of life, and 2) to analyze the coping strategies used by people with lipodystrophy and is these have any connection with their quality of life. One hundred and thirty four people infected with HIV were assessed and divided into two groups; subjects without lipodystrophy (n=73, 54%) and subject with lipodystrophy (n=61, 46%). When comparing the two groups quality of life, a significant difference (p=042) in the subscale “emotional discomfort” of the questionnaire was found. When dealing with health problems, subjects with lipodystrophy use different coping strategies, both positive and negative. The most common are “not requesting help from other”, “following the doctor´s prescription”, “think about overcoming it on your own”, and “feeling hopeful and optimistic”. Significant relations were found between the coping strategies used and all the quality of life questionnaire subscales in summary, lipodystrophy may reduce quality of life at an emotional level when certain coping strategies are adopted

Corticosteroid-induced clinical adverse events: frequency, risk factors and patient's opinion.

BACKGROUND: More than 50 years after the introduction of corticosteroids, few studies have focused on corticosteroid-induced adverse events after long-term systemic therapy. OBJECTIVES: To assess the frequency, risk factors and patient's opinion regarding clinical adverse events occurring early during prednisone therapy. PATIENTS AND METHODS: We conducted a cohort study in two French centres. All consecutive patients starting long-term (> oir = 3 months), high dosage (> or = 20 mg day(-1)) prednisone therapy were enrolled. The main clinical adverse events attributable to corticosteroids were assessed after 3 months of therapy, by comparison with baseline status. The patient's opinion regarding the disability induced by these adverse events was recorded. Risk factors of frequently observed adverse effects were identified by using logistic regression. RESULTS: Eighty-eight patients were enrolled and 80 were monitored for at least 3 months (women 76%; mean age 59.1 +/- 18.7 years; giant cell arteritis 39%; mean baseline prednisone dosage 54 +/- 17 mg day(-1)). Lipodystrophy was the most frequent adverse event [63.0% (51.0-73.1)], was considered the most distressing by the patients and was most frequent in women and young patients. Neuropsychiatric disorders occurred in 42 patients [52.5% (41.0-63.8)], necessitating hospitalization in five cases. Skin disorders were noted by 37 patients [46.2% (35.0-57.7)] and were more frequent in women. Muscle cramp and proximal muscle weakness were reported by 32.5% (22.5-43.9) and 15% (8.0-24.7) of patients, respectively. Newly developed hypertension occurred in 8.7% (2.9-20.3) of patients. Lastly, 39% (19.7-61.4) of the premenopausal women reported menstrual disorders. CONCLUSIONS: Lipodystrophy and neuropsychiatric disorders are common adverse events of long-term prednisone therapy and are particularly distressing for the patients concerned. The impact of these adverse events on adherence to corticosteroid therapy is not known.

Facing HIV: body shape change and the (in)visibility of illness.

Illness is commonly invested with considerable stigma because of its tendency to evoke charged meanings around corporeality, selfhood, suffering, and mortality. Perhaps more than any contemporary disease HIV/AIDS has served as a powerful signifier for a range of cultural anxieties. Given the resultant stigma, HIV becomes very much a question of visibility. This article explores the visibility of HIV within the Sydney gay community with reference to lipodystrophy, an unusual process of fat redistribution caused by HIV therapy that manifests in a series of distinctive body shape changes that have come to signify HIV socially. Conceived through the cultural lenses of AIDS, medicine, illness, and body image, lipodystrophy is largely constituted as negative and shameful, as Other in the ethnographic domain. I examine how this conception is reproduced and contested in narratives and experiences among HIV-positive gay men who have lipodystrophy. Their stories suggest diverse "ways of seeing" lipodystrophy that reveal an ambivalent potential of visibility not only as a medium of stigma, differentiation, and discrimination but also as a medium of affinity, empathy, and desire. These localized patterns of illness visibility are explored in relation to the circulation of meanings within a broader social sense and their significance in terms of a more general consideration of representational practices and their social and ethical implications, with specific attention given to educational and media representations of HIV/AIDS in Australia and also in the United States.

Relationship between lipoatrophy and quality of life.

An informal yet comprehensive literature review of abstracts published in Medline was undertaken to identify papers that reported on how facial aging, lipodystrophy, and facial lipoatrophy affect quality of life. Facial lipoatrophy can erode self-esteem, cause psychological distress, and lead to depression. Persons with HIV infection encounter both stigmatization and marginalization as a result of facial lipoatrophy. In addition to exploring novel antiretroviral therapies that do not result in lipodystrophy, clinicians should consider treatments that correct the appearance of lipoatrophy for patients who feel adversely affected by the condition.